Monty95 Posted February 25, 2019 Author Share Posted February 25, 2019 Hi Alto, Yes, that's correct, I wrote on the 22/2 that I had taken 10 mg that day, however that was early morning before I had gone to bed, so it was actually taken on 21/2. Last night I was agitated, somewhat anxious, experiencing cardiac arrhythmias, teeth grinding and was unable to sleep until 7 AM this morning for 3.5 hours. It actually feels as though my brain is occupying less space in my head which is more noticeable lying down and makes me feel slightly nauseous. I had a new bizarre symptom while attempting to get to sleep where I felt extremely dizzy but it was as though my brain was moving or swirling in distinct regions; very odd and difficult to describe. I was then experiencing what I believe are called hypnogogic hallucinations - before fully in a sleep state, still conscious while drifting off to sleep but dreaming ie. experiencing disconnected fragments of language and images which were extremely frightening and prevented sleep. I believe this is associated with inadequate dopamine innervating the prefrontal cortex which is consistent with the loss of executive functioning I have been experiencing. I have also had vivid nightmares where I am aware I have Alzheimers and cannot move or speak, just prior to reinstatement. I realise this must all sound very strange and I should probably stress I was prescribed effexor for depression/anxiety which I believe was exacerbated by life circumstances at the time as well as b12 & D deficiency and iron deficiency anaemia; I have never experienced any hallucinations/ anything remotely resembling these symptoms before discontinuation. This truly is unbearable and I wonder whether perhaps I should chance an increase in my dose and splitting over the course of the day to minimise agitation. Things don't appear to be improving significantly and I'm not sure I can live like this indefinitely, with the worry certain features such as the loss of cognitive function will become permanent, as is seen in patients taking antipsychotic drugs which result in similar dopamine blockade of the frontal lobes. Could you please let me know whether you are able to make any recommendations either way? Thanks very much. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Monty95 Posted February 25, 2019 Author Share Posted February 25, 2019 18 hours ago, Alanmane said: Hello friend, I am also struggling with the horrible affections of effexor abstinence, the worst, more than the animic state is mental dysfunction, very difficult to think clearly and use my head efficiently in this state, I feel with creativity, memory , concentration etc in low form. I have 10 months reducing from 150mg to 40mg, you can write in this forum and you are not entered is already a great achievement, to what seems ridiculous all this? I'm so furious. Thanks very much for the support, I feel for everyone who has been prescribed this drug and is experiencing problems coming off. I'm also furious about what was told to me about the drug, I was lied to about the possible side effects. It was also prescribed involuntarily while I was in hospital, I attempted to stop taking it on the second day but didn't succeed. I feel it has probably destroyed my life now. You are very wise to be tapering slowly and I believe you're strong enough to get through this and see improvements once your taper is complete. It is ridiculous , the way these drugs are handed out so casually, I hope that a few years from now the truth about the negative effects on brain function will become known and they will no longer be prescribed in the way they are now. Best of luck with your taper. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Monty95 Posted February 25, 2019 Author Share Posted February 25, 2019 Hi Alto/ ChessieCat. These are my notes for Monday: 3 AM: Not able to sleep, heart arrhythmia, teeth grinding, dizzy- sensation of different parts of my brain moving while lying down. Forehead numb. Hypnagogic hallucinations preventing sleep - while drifting off to sleep aware of different disconnected nonsensical fragments of language and imagery that seem foreign/ don't seem to originate from conscious thinking. 7 AM Able to get to sleep. 10:30 AM Wake with sense of dread. Sense of adrenaline and cortisol /hyperarousal, slight tremor. No nausea. 11 AM lucid but anxious. Period of acute confusion seems to have resolved but left with worsening executive cognitive function. Very dysphoric mood - dread/depression/anxiety. 1 PM New symptom - visual field seems to dissolve and blur. Not long lasting. General blurriness has improved since taking 10 mg. Slightly agitated. 3:30 PM took 5 grains in a gel cap with food. Slight headache in forehead. Feeling panicked, dread, anhedonic, no motivation or engagement. 4 PM Sensation of blood pounding/ adrenaline in my lower legs. 5:30 PM Panic calmed slightly. Dysphoric mood, muscle fasciculation. Difficult to keep track of time passing. 6:15 Agitated, dysphoric, anhedonic, depressed. 7 PM Akathisia bad, panic, urge to pace. Emotionally agitated focussing on current problems. 8:30 PM Feeling calmer, relaxed. Dizzy standing. Cognition okay, unchanged from initial change at initiation of 1 mg. 9 PM Bit shaky standing. Heart rate slightly elevated. 11 PM: feeling calmer, however mood affected by worrying about frontal lobe damage. Hypnagogic hallucinations are associated with Parkinsonism/ low dopamine so worry I should be taking a higher dose to prevent further brain damage. No symptoms of sympathetic hyperactivity/ arousal or akathisia. 12 AM: slight tremor brought on by anxiety. Seeing floating lights and after images, script appears to dissolve on computer screen. Possibly I'm just having a bad day today because of lack of sleep. I'm just wondering whether as effexor had a very sedating effect on me while I was taking it regularly if taking a larger dose may help with the restlessness towards the end of the day? It seems to be okay for 3-4 hours after taking the dose at which point I become somewhat agitated and experience some hyperarousal which generally wears off towards the end of the day. Have you ever seen anyone reinstating after three months and a larger dose having a paradoxical effect on stimulation ie. too stimulating at a lower dose and more sedating at a higher dose? 10 mg was more activating than 1 mg but possibly 37.5 mg would be more sedating initially and take longer to wear off over the course of the day? If I had a bad reaction to this would immediately stopping mitigate against any further effects? I didn't want to take this risk but I have very little quality of life at this point due to cognitive symptoms anhedonia/confusion/lack of executive function which seem to have a general trend towards worsening and I'm willing to try just about anything at this point. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Monty95 Posted February 25, 2019 Author Share Posted February 25, 2019 (edited) EDIT: It is now 4:30 AM. At 1:30 AM I attempted to sleep, slightly anxious with an internal tremor. Over the last 3 hours I have experienced low level nausea, in a cold sweat, parasthaesia/ pins and needles in arms and legs, sensation of mild adrenaline coursing around my body, in a constant cold sweat, aware of my heart rate, sensation of blurring and melting of parts of my visual field/brain as I lie with my eyes closed, hypnagogic hallucinations, slight tremor, unable to get to sleep. These symptoms have only started over the last two nights as I attempted sleep. Do you have any thoughts or suggestions on helping this at all, things seem to be getting worse and not better. I am struggling to see how I can potentially live this way for months or years. Please help I'm very desperate. Edited February 26, 2019 by ChessieCat removed quote Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Monty95 Posted February 27, 2019 Author Share Posted February 27, 2019 Hello Alto and ChessieCat, I have made a second mistake now with not following your advice with dosages. It won't happen again if you are able to help at all. I was unable to sleep for two nights other than 3.5 hours and dozing a few hours in the day on Monday and so foolishly reinstated 37.5mg Tuesday. I felt fairly relaxed all day however around twelve hours after the dose at 3:30 I developed akathisia and insomnia and was bolt upright in bed at 4AM which improved somewhat by the morning. I thought if I split the dose today and took 19.25 mg in the morning at 9:30 and again in the PM at 9:30 this would help with sleep as I felt somewhat sedated during the day., for around twelve hours after the dose. Again I felt relaxed all day and developed some signs of dysautonomia/ sympathetic hyperarousal when attempting sleep at 11:30 PM; had an episode of tachycardia and some arrhythmias. Then as I tried to sleep a new symptom of myoclonic seizures, violent jerking of my arms and legs, which lasted for an hour or two intermittently. As of about 1:45 I'm experiencing terrible akathisia, feeling as though my body is charged an needing to move. Prior to taking the 10 mg effexor, I did have some intermittent restless leg type movements, however nothing like this anxiety and agitation, now extreme akathisia. Any advice would be much appreciated, could you recommend as to whether it is safe to discontinue tomorrow? Should I drop back to half then 1 mg again, or is this too fast? My worst fear on reinstatement was developing akathisia. I also have been unable to sleep now for four days in a row and was only able to eat a piece of bread and avocado with some fruit today, as I felt nauseous from lack of sleep so my weight is becoming dangerously low also. I realise not following your advice has put you in a difficult position as to how to but any recommendation for tomorrow would be very helpful. Thankyou in advance for any help. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Administrator Altostrata Posted February 27, 2019 Administrator Share Posted February 27, 2019 On 2/24/2019 at 1:14 PM, Altostrata said: .... Is this what you've taken: Feb. 20 Wednesday 4:30 p.m. 5 beads Effexor XR Feb. 21 Thursday 4:30 p.m. 10mg Effexor XR Feb. 22 Friday 3:00 p.m. 5 beads Effexor XR Feb. 23 Saturday 3:00 p.m. 5 beads Effexor XR Feb. 24 Sunday 4:30 p.m. 5 beads Effexor XR Why are you taking Effexor at different times of day? Please take the same dose at the same time each day. As we warned you, you have experienced kindling from too much Effexor. It may take some time for your nervous system to settle down from too much Effexor stimulation. You may be miserable for weeks. You will need to be patient. See The Windows and Waves Pattern of Stabilization If I were you, I'd take 5 beads of Effexor XR tomorrow at 3 p.m. and continue to take it at the same time each day. This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment
Monty95 Posted March 1, 2019 Author Share Posted March 1, 2019 On 2/28/2019 at 7:10 AM, Altostrata said: As we warned you, you have experienced kindling from too much Effexor. It may take some time for your nervous system to settle down from too much Effexor stimulation. You may be miserable for weeks. You will need to be patient. See The Windows and Waves Pattern of Stabilization If I were you, I'd take 5 beads of Effexor XR tomorrow at 3 p.m. and continue to take it at the same time each day. Thankyou Alto for taking the time to respond. I appreciate the advice, particularly as I'm not thinking clearly or rationally at the moment and seem to be uncharacteristically anxious and making poor decisions. I very much regret not taking your advice and sticking with the 1 mg experiment, as it is now very difficult to tell what is the result of increase in dose or withdrawal. I did take 5 beads as you suggested, however felt waves of nausea and shakiness so out of desperation I updosed and took 10 mg in an attempt to avoid vomiting as I don't know how I would cope with acute withdrawal in addition to my other symptoms. I actually had a better day yesterday and was able to get some sleep overnight despite some akathisia when I attempted to get to sleep. I did the same thing again today, took 5 grains and then felt very dizzy, panicked and took 10 mg again. I'm now feeling the beginning of intense akathisia, dreading attempting to sleep and thinking this was clearly a huge mistake. I will take 1 mg tomorrow and stick with it as you suggest as I can't tolerate this intense agitation and insomnia, in spite of the improvement in cognition I thought I experienced. I think this is what you would recommend in order to minimise adverse effects, or would you recommend 5 mg , then 1? I know constantly chopping and changing is the worst possible thing I could do to further destabilise my CNS and I'm fearful I've done irreversible damage now. I'll post my notes from the last two days below, in spite of the fact they are probably of limited use now. Thursday: 2AM: Insomnia, despite 3 hours sleep over the last 3 days. 4AM: Insomnia, extreme akathisia, body coursing with the urge to move. 8AM: able to sleep. 11AM: Wake with anxiety and nausea. Extreme restlessness. Started to faint on standing. Drank water. 2PM: 5 grains in a gel cap. 2:30: waves of nausea. Took an additional 32 grains in a gel cap, totalling 10 mg. 3:00 Cognition and anhedonia seem improved. No confusion. Nausea. 3:30: Relaxed, mood improved, concentration and anhedonia improved. Having a window. Feeling more mental clarity and a bit more like myself. Dizzy and blurry vision. 3:45 Eat lunch. 1/4 tsp of coffee. 7:15: Relaxed, not agitated. Muscle fasciculations in leg. Vision extremely blurry. 8:45: anhedonic, concentration poor, minimal situational awareness. Still relaxed. 9:30 5 mins moderate exercise.Heart rate irregular. 9:45 Nausea, cold sweat, cognition poor. 10:30 Fatigued standing, sweating. 10:50 Muscle weakness on right side, some pressure across the back of my head, dysphoric mood. 11:30: Cognition, awareness, concentration, responsiveness a bit improved. Derealisation a bit improved. 12:50 Waves of dizziness, nausea, headache. Cognitive fog seems improved. Some adrenaline and activation in lower legs. Cold sweat. 1:40 Vertigo, dizziness, nausea. Relaxed. 3:40 akathisia extreme. 5:30 Able to sleep. Friday: 1/3: 1:30 PM: Slept 8 hours. Normal dreaming, no nightmares, hypnogogic hallucinations or myoclonic seizures. Woke lucid with some nausea and anxiety, no feeling of dread in chest. A bit better than previous days. 2:30 Took five grains effexor xr in gel cap. 3:00 Relaxed, muscle weakness in legs, dizzy, poor concentration, racing heart. 3:30 Ate lunch, appetite improved. 1/4 teaspoon of coffee. Concentration/awareness poor. 5:30 Very dizzy. Panicked, took 14 grains in a gel cap. 5:45 Took 18 grains in a gel cap. Restless legs. 7:45 Relatively relaxed. Legs a bit shaky. 8 PM Akathisia, restless legs 8:40 Very dizzy, head pressure, very blurry vision. Feeling intense akathisia, surging of energy/ pins and needles in lower legs. Slight window of mental clarity, depersonalisation and cognition improved. Anhedonia not much improved. 9:45 Pronounced akathisia, sweating. 10:00 Worsening akathisia, the worst yet since reinstating. 10:15 Feeling very wired, activated like taken a high dose of a stimulant. Agitated, shaking, mind racing, fast heart rate. 11:00 Calmed slightly , still agitated and restless legs This extreme restlessness is intolerable, although it seems to come with some cognitive improvements. I think you would recommend dropping the dose immediately to five grains tomorrow? I think you are right that I will probably be miserable for some weeks. I wish so much I had listened and never experimented with a higher dose. Thankyou once again for all of the support and advice, I appreciate all of your time and input. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Administrator Altostrata Posted March 1, 2019 Administrator Share Posted March 1, 2019 If you insist on to kindling yourself, we can't do much for you. Do you like akathisia? You're going to have to let those symptoms settle down. It is possible more than 5 beads is the appropriate dose for you, but you keep on throwing your nervous system into chaos. There's no way to tell what works. We need to see a baseline where you're taking the same amount of the drug for at least 5 days. If I were you, I'd take 5 beads every day at 3 p.m. You will experience waves and windows as your nervous system adjusts to the beating you're giving it. See The Windows and Waves Pattern of Stabilization This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment
Monty95 Posted March 7, 2019 Author Share Posted March 7, 2019 On 3/2/2019 at 9:41 AM, Altostrata said: If you insist on to kindling yourself, we can't do much for you. Do you like akathisia? You're going to have to let those symptoms settle down. It is possible more than 5 beads is the appropriate dose for you, but you keep on throwing your nervous system into chaos. There's no way to tell what works. We need to see a baseline where you're taking the same amount of the drug for at least 5 days. If I were you, I'd take 5 beads every day at 3 p.m. You will experience waves and windows as your nervous system adjusts to the beating you're giving it. See The Windows and Waves Pattern of Stabilization Hello Alto/ChessieCat, You managed to make me smile, which is pretty unheard of at the moment No, I can't say I'm much of a fan of akathisia, or any other symptoms I'm experiencing, although my behaviour might suggest otherwise. I lowered my dose to 1 mg as you recommended and will post my daily notes below. Saturday 2/3: 1AM: agitated, slight tremor. Insomnia. 4AM: Some relief of intense akathisia. Nausea and night sweats. 5 AM: Akathisia unbearable, unable to get comfortable in any position, pacing, surging adrenaline in legs travelling through body. 6 AM: Able to sleep. 11AM: Wake with dread, nausea, cortisol, restlessness. 2PM: Took five grains of effexor in a gel cap. Unbearable restlessness and anxiety. Headache. No adrenaline in legs but heavy and sore. 2:40 PM Eat lunch. Surging adrenaline in legs. 3PM Slightly calmer. Headache, sensation of pins and needles in forehead. 3:20 Slight partial window of mental clarity. Independent thought/goal setting/problem solving improved. 4PM 1/4 tsp coffee. Concentration/ awareness of time passing not to bad. 5PM Concentration not too bad. Very dizzy. 6PM Surging adrenaline in lower legs. 9:15: 'Window' of perhaps 60-70% normal cognitive function. Able to follow and initiate conversation. Memory/goal setting/ initiative/ concentration improved. Relaxed. Legs heavy. 9:30 1000 IU Vit D. Significant hair loss. 10:00 Sweaty, some fatigue standing. Dizzy. 10:30: Shaky standing, some muscle weakness in right leg. Anhedonia, derealisation not much improved. 11:30 Restless legs/ onset of akathisia. Legs sore and heavy. Head pressure/headache in forehead. 12 AM Akathisia calmed slightly. Muscle weakness/ fatigue standing. 12:30 Cognition/ higher order functions poor. Short term memory poor. Very dizzy, spinning sensation lying down. Adrenaline surging in legs. Sunday 3/3: 1:30 AM Restless legs largely calmed, pins and needles and slight surging energy in feet. Feeling very vacant . Difficulty formulating sentences easily/spontaneously. Some pins and needles in forehead. 1:45 Not tired despite lack of sleep. Insomnia. Low mood. 2:30 AM Pronounced heart rate, arrhythmia, feeling vacant. Vertigo, room spinning, blood pounding in my head. Pins and needles across the back of head. Slight, bearable surges of energy/adrenaline in my lower legs. 4 AM: Able to sleep. 11 AM Wake with dread, cortisol, adrenaline. Resume dozing. 2PM: Wake after 9 hours sleep. No akathisia interrupting sleep. 2:15 Took five grains effexor in gel cap. Lucid but cognition poor, significant cognitive fog, dazed, poor memory. 2:30: Ate lunch. Depressed mood. Feeling mentally blank. Cognition poor. 3PM: Spoke to my sister, able to carry conversation and make/understand some jokes. Concentration/ awareness/ cognition not too bad. Mood okay. 8:30 PM Pins and needles across forehead 8:45 Waves of dizziness and blurry vision. 9:30 : 1000 IU Vit D. 10:00 PM Forehead feels as though anaesthetised, numbed. Poor cognitive function. Dizzy and detached 10:30 Shaky standing, muscle weakness in right leg. Derealisation significant. 1:30 Restless legs calmed. Some pins and needles in my feet. Feeling vacant . Slight sensations of pins and needles in my forehead. 1:45 Insomnia, low mood. 2:30 Cognition poor, feeling vacant. Cardiac arrhythmia, mainly relaxed, some bearable adrenaline surges in legs. 3 AM Vertigo, pronounced heart beat, blood pounding in head, pins and needles across the back of my head. Insomnia. 4:40 Able to sleep. Monday 4/3: 10 AM: Wake with cortisol, dread, adrenaline, nausea. 10:30: Dozing. 2PM: 5 grains effexor in a gel cap. Slightly anxious/agitated/shaking. Cognition poor, cognitive fog. 4PM: Numb sensation in forehead. Eat lunch, appetite improved. 5PM: Concentration/ awareness better than yesterday, able to follow jokes. Relaxed. 9:30 PM: Improvements in cognition seem consistent with starting on 1 mg, significantly worse than several days ago on 10 mg. Feeling vacant, depressed mood, anhedonic. very tired/lethargic. DP/DR unchanged. 10:30 Anxious, very low mood, frightened. Relaxed, no agitation or akathisia. Fatigued standing. Anhedonia, derealisation, depersonalisation significant. Cognition nearly as bad as prior to reinstatement. 11:50 Muscle weakness, fatigue. Disassociation, sweating. Extremely blank and vacant. Flat affect. Tuesday 5/3: 11 PM: Very low mood. Pins and needles in forehead. Not agitated, mild surging of pins and needles in legs. 1AM Relaxed, tearful. Feeling very depressed and hopeless. Mind blank and vacant. Numb sensation in forehead. 3AM Dizziness, vertigo while lying in bed. Sensation of spinning, moving visual field. Able to sleep. 5AM Night sweats, nightmare about lobotomisation. 7AM Wake up after vivid nightmare about drowning. Able to get back to sleep. Wednesday 6/3: 1PM: Woken by adrenaline, cortisol. 1-2 PM: Series of memories from childhood while attempting sleep. Dozing. 2:15 PM 5 grains effexor in a gel cap. Mind blank, pins and needles in forehead. 3:15 Eat lunch. 1/4 tsp coffee. 5PM Seem to be having problems with medium term memory ie. Remembering what I have done/ very minimal memory of eg. books I have read over the last few months since withdrawal. Attempts to probe memory with cues seem fruitless, appear to be erased. Depersonalisation - can't remember what I was interested in or what I occupied my time with prior to withdrawal. Feel alien to my former self. Depressed and ruminating. 8:30 PM Fatigue, forgetfulness, over emotional - loneliness/anxiety/fear, horror. Cognition poor - very detached and mind blank - no significant improvements since reinstating 1 mg. 9:00 1000 IU Vit D. 1/8 Ferrous sulfate tablet. Slight dizziness and shaky standing. 10:50 Pressure across the back of my head. Sensation of pressure and pain in my forehead when touched. Forehead feels hot. Slight increase in concentration/awareness. Derealisation and cognitive fog seem a bit improved. Window in functioning. 11:15 Energy improved, less fatigued. Legs less heavy and weak. 12:30 Mild pins and needles in legs. No urge to move/ akathisia. Depersonalisation a bit improved. Not as vacant as usual. Anhedonia seems improved, able to follow a movie. Crushing lateral head pressure in forehead. 1 PM: 1/8 Multivitamin - Zinc, magnesium, manganese, Vit A, B6. 5 mins moderate exercise. 1:30 Some difficulty with vocabulary, word retrieval, composing sentences. Language skills unaffected previously in withdrawal - the one cognitive function that seemed to have been preserved. 2 AM: Pronounced slow heart rate, several arrhythmias. 3 AM Able to sleep. Thursday 7/3: 11 AM: Wake with some cortisol/adrenaline. No nausea or sweating. Seems slightly improved. Dozing. 1:30 Wake after 8 hours sleep. No disruptions to sleep, nightmares, night sweats. 2:15 5 grains of effexor in a gel cap. 2:30 Lunch 1/2 teaspoon coffee. 5 PM Able to speak to my sister over the phone. Cognitive function okay. Slightly elevated from 1 mg baseline function. 6 PM Concentration/awareness of time passing poor. Minimal environmental awareness. 8:30 PM Concentration poor- feeling 'spellbound' stuck unaware of passing time, tunnel vision. Feeling blank, lack of motivation, anhedonic. Difficulty expressing myself in notes, language/vocabulary retrieval poor. Comprehension poor - difficulty understanding anything complex, need to re-read even simple material before able to process any information. Short term and working memory poor. Depersonalisation- detached, blank, don't feel present in my own body. Relaxed, appetite good, no symptoms of dysautonomia or akathisia. Legs not heavy or stiff. Mood less depressed and anxious but anhedonic and unengaged. 9PM Numbness and tingling across the back of my head. 9:15 1000 IU Vit d, 1/8 325 mg ferrous sulfate, 1/8 multivitamin tablet (zinc amino acid chelate 125 mg, magnesium phosphate 122 mg, manganese amino acid chelate 20 mg, vitamin A 2500 IU, B6 50 mg.) 10:30 Headache in forehead. 12:30 Pins and needles and feeling of anaesthesia in forehead. Mild pins and needles in lower legs. Sorry, I know that's a lot of information to post at once. Just to summarise - I think the akathisia settled down over the course of the week and is no longer an issue. The dysautonomia/ sympathetic hyperactivity seemed to be improving even before I reinstated and has continued to improve, I occasionally have arrhythmias but no tremor, temperature spikes or overwhelming sensation of adrenaline coursing throughout my body. The morning nausea and cold sweats have mostly resolved and I'm now just experiencing a cortisol/ adrenaline spike when it gets light in the morning. My sleep and appetite have also improved significantly. I think perhaps the nightmares and sweating were part of withdrawal from the 37.5 then 10 mg and they seem to be improving also. I think the best day I had was when I dropped the dose to 1 mg and had some relief from akathisia but still had some effexor in circulation so I had somewhat improved cognitive functioning. The intense intermittent confusion has cleared up, however I'm left with the extreme cognitive symptoms consistent with lobotomisation/lack of executive function ie. working memory/anhedonia/planning/awareness/ motivation etc. and now increased memory loss and impaired language skills. Derealisation and depersonalisation are also significant. My main concern is the cognitive impairment, as it has basically wiped all the meaning from my life at the moment. I'm just wondering whether you think it might be worthwhile to try updosing to see if I could improve my cognition at all and what dose you would recommend? Should I try 2 mg and increase slowly from there if needed , or would it be better to jump straight to 5mg - is it problematic to continually increase the dose if needed? I also saw my GP Monday and attempted to explain some of what I've been going through since being discharged from hospital with symptoms of sympathetic hyperarousal, that the confusion and cognitive symptoms consistent with a decline in executive functioning/short term memory loss had since worsened, also that I had experienced myoclonic seizures and hypnagogic hallucinations while attempting sleep (which I think has been associated with Parkinson's disease/ low dopamine). He now thinks I am psychotic/delusional regarding my perception of cognitive decline as a withdrawal symptom and recommended an antipsychotic. I think I would have been amused by this in the past but at the moment it just seems kind of surreal and scary that there is no acknowledgement or help from prescribing doctors. When I reiterated that all of these symptoms had only started when I reduced the effexor dose and had persisted with some variations since, he said that as it had been three months my brain should have long since up-regulated serotonin/norepinephrine/dopamine in accordance with drug naive homeostatic function. He seems to think this should happen instantaneously the moment the drug leaves the system. This might make me laugh if so many people weren't suffering with the consequences of this attitude. He also said that I should have persisted with the 37.5 mg, that the akathisia would settle after a week and that if they were intolerable I should discontinue and not bother with 1 mg, as it was 'less than homeopathic', wouldn't make it through first pass metabolisation in the liver and was only confusing the issue. I don't think this is the case, as it definitely made a difference within hours of taking the first 1 mg but I'm second guessing myself now. The symptoms I had from the 37.5 mg dose were unbearable though so I don't think that's an option for me. Thanks so much in advance for any advice or help you are able to offer. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Administrator Altostrata Posted March 7, 2019 Administrator Share Posted March 7, 2019 5 hours ago, Monty95 said: I'm just wondering whether you think it might be worthwhile to try updosing to see if I could improve my cognition at all and what dose you would recommend? Should I try 2 mg and increase slowly from there if needed , or would it be better to jump straight to 5mg - is it problematic to continually increase the dose if needed? How long have you been taking 5 beads this time around? Since you've been up and down in Effexor dosage, we need to give consistent dosing some time before we can see your baseline symptom pattern. I am seeing progress over 3/2-3/7 above. This should continue as your body "washes out" the higher doses you were taking before. Please continue to keep daily notes. This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment
Monty95 Posted March 20, 2019 Author Share Posted March 20, 2019 On 3/8/2019 at 8:21 AM, Altostrata said: How long have you been taking 5 beads this time around? Since you've been up and down in Effexor dosage, we need to give consistent dosing some time before we can see your baseline symptom pattern. I am seeing progress over 3/2-3/7 above. This should continue as your body "washes out" the higher doses you were taking before. Please continue to keep daily notes. Hi Alto and ChessieCat, I've been taking 1mg Effexor XR since the second of March, approximately two weeks now. I did see some progress with akathisia/agitation and anxiety decreasing following the reduction in dose, for which I'm very grateful. I've been experiencing some windows and waves in my symptoms, mainly affecting my awareness of passing time/ability to concentrate/cognitive fog. My cognitive impairment relating to executive functioning hasn't noticeably improved beyond the baseline improvement I saw after reinstating the 1 mg dose. I worry that this may become permanent if not corrected, based on studies of brain scans of antipsychotic users showing atrophy of grey matter in the prefrontal cortex, due to inhibition of dopamine innervation after just months of use. I'm also having some trouble expressing myself in thoughts/speech/writing which wasn't previously an issue and have noticed emotional blunting and depression I wasn't aware of before reinstatement, although this may just be a result of withdrawal and unrelated to my current dose. Vertigo has also increased over the last couple of days. Also its a relatively minor issue but I noticed after the 37.5 mg dose some rosacea returning coupled with oedema and coarsened skin on my nose which was one of the final reasons for tapering off initially and which impairs my breathing to some degree. This went away a few days after stopping effexor altogether but has reappeared with higher reinstatement dose and has not been relieved with the reduction to 1 mg. I'm just wondering whether you would recommend a small updose, perhaps to 2 or 5 mg, to see whether it may alleviate some of the symptoms of cognitive impairment? I will post my daily notes from the last week below, if these are of any use? Wed 6/3: 2:20 PM 5 grains Effexor in a gel cap. 3:15 PM lunch. Medium term memory seems affected. Depersonalisation significant, trouble remembering how I used to feel/what I used to do.Difficulty conducting conversations, mind blank. Depressed mood, ruminations. 8:30 PM Fatigued, short term memory impaired. Attempts to probe or trigger memory recovery with mental cues fruitless. Emotional - loneliness, anxiety, fear, horror. Heaviness in legs. Dizzy. Cognition poor, very detached and blank mind. Not improved since 1 mg effexor reinstatement. 9 PM 1000 I U Vit D. 1/8 Ferrous sulfate tablet. A bit dizzy. A bit shaky standing. 10:50 PM Pressure across the back of my head. Sensitivity/pain in forehead when touched. Heat in forehead. Awareness/concentration/derealisation a bit improved. 11:15 PM Energy a bit improved. Less heaviness in legs. 12:30 AM Mild pins and needles in legs, no urge to move/restlessness. Cognitive fog, anhedonia a bit improved. Able to watch and follow television series. Crushing lateral pressure in forehead. 1/8 multivitamin- zinc, manganese, magnesium, B6, Vitamin A. 1AM Five minutes exercise 1:30 Difficulty with vocabulary, word retrieval, composing sentences. Previously unaffected. 2AM Pronounced slow heart rate and arrhythmias. A bit sweaty. 3AM Able to sleep. Thurs 7/3: 11AM : Woken with some cortisol adrenaline. No nausea or sweating - seems improved. 11-1:30 PM Dozing. 2:15 PM Five grains effexor in gel cap. 2:30 Lunch. 1/2 tsp coffee. 5 PM Spoke with my sister on the phone. Cognitive function okay, baseline function at 1 mg effexor. 6 PM Concentration/ awareness of time and environment poor. 8:30 PM Less anxiety and depression than yesterday. Feeling blank, unmotivated, anhedonic- feel in a dream state, stuck unaware of passing time. Feel detached and not present in my own body. Difficulty with language, vocabulary retrieval, expressing myself in notes. Difficulty with medium term memory. 9 PM Numbness and pins and needles across the back of my head. 9:15 PM Some mild agitation. ( 2 x the amount of coffee I have usually today) Problems with short term memory. 9: 30 PM Dinner, 1000 IU Vit D, 1/8 Multivitamin. 11PM Strong depersonalisation, feel as though sleepwalking while not present in body. Tunnel vision, dissociation. Pins and needles/ anaesthetised sensation in forehead. 11:30 Anhedonia significant, depressed mood, emotional numbing, unable to cry. Slightly fatigued standing, some stiffness in legs, improved from recent days. 1:45 AM Slightly agitated, possibly due to excess caffeine. 3AM Insomnia, mild vertigo, spinning visual field. 4AM Able to sleep. Friday 8/3 11 AM Jolt of cortisol/ adrenaline in response to noise. 11 AM - 1:30 PM Dozing. Intermittent cortisol spikes. Depressed mood, don't want to wake. 2:15 PM Five grains effexor in gel cap 2:20 PM Lunch. Concentration poor, cognitive function poor - baseline at 1 mg effexor, vision blurry - some difficulty reading. 7:30 PM Headache, Slight 5-10% improvement in concentration. 7:45 PM Five minute walk. Detached, unengaged, minimal sense of passing time. Pins and needles in feet. 8PM 1000 I U Vit D. Faint when standing. 8:30 PM Dinner 1/8 ferrous sulfate, 1/8 Multivitamin. Window - depersonalisation/cognitive fog, concentration slightly improved. Mood good, no depression or anxiety. 10 PM: Vertigo, fatigued standing. Pupils dilated and uneven.Lightheaded and dizzy. 12:40 AM 5 Mins exercise - heart beat irregular. Numb sensation in forehead. 4AM Series of cardiac arrhythmias. Able to sleep. Saturday 9/3 2:00 Woken with dread in chest, cortisol, adrenaline. No nausea. Series of vivid nightmares overnight. Depressed mood. 2:20 PM Five grains effexor in a gel cap. 2:30 Dizzy and disoriented. Cognitive fog, inability to focus. Not previously dizzy on waking. Cognition seems worse - difficulty with comprehension/analysis. Lacking motivation/engagement. Difficulty with task setting, working memory. 3:15 Lunch. Window in cognitive functioning, able to remember some activities I was previously interested in. 1/2 tsp coffee. 5PM Concentration/ sense of time passing poor. Very dizzy. Vision blurry, visual field appears to melt. Series of memories from childhood. 7 PM Feel intoxicated, dissociated, detached, not present. Dizzy. 9:30 PM 2000 I U Vit D. Requires a lot of effort and concentration in simple problem solving, analysis of any new information. Can perform tasks by rote but difficult when deviating from this. 10:50 PM Tearful, depressed mood. Emotional blunting, difficult to cry. Anxiety, hopelessness. Fear related to cognitive impairment, frightened by loss of executive function and memory. 11:20 AM Derealisation significant. Some confusion. Dizziness, fatigue, sweating. Light sensitivity/ depressed mood. Similar degree of confusion as prior to reinstatement of 1 mg. 12:00 AM Vertigo and sweating. Depressed mood, fearful and anxious. 2:45AM Forehead feels anaesthetised. Feeling of being uncomfortable in my skin. A bit agitated. ( 2x usual caffeine today and 2 x vitamin D)Dizziness and fatigue. Headache. 3:15 AM Very uncomfortable and tense. Can't relax. Visual field swimming with eyes closed. 4AM Able to sleep. Sunday 10/3 11 AM Woken with cortisol spike. 2PM Dozing, depressed mood, don't want to wake. 2:20 PM Five grains effexor in gel capsule. 3:30 PM Lunch. Appetite good. Feel a subtle sense of wellbeing that has been absent post discontinuation of effexor. Window in cognitive functioning. Able to perform some spontaneous behaviours eg. write a shopping list. 5PM Awareness of time/environment seems a bit better than yesterday. 7 PM Dinner 8:30 Pins and needles in forehead. Concentration/awareness poor. Took 1/8 multivitamin and 1/8 ferrous sulfate tablets. Dazed/concussed feeling, dreamlike/spellbound feeling, tunnel vision, motivation poor. Lethargic. Cognition - planning, goal setting, spontaneity poor. Anhedonia a bit improved. Dizziness. 10PM 5 mins moderate exercise. Heart rate not irregular. 10:30 Headache in forehead. Mild muscle weakness on right side. 11PM Pressure localised to left forehead. Facial tic triggered by stress. Anhedonia significant. Derealisation perhaps slightly improved from yesterday. Less fatigued standing. 12:45 Anxious, depressed mood, blank mind, cognition poor, anaesthetised feeling/pins and needles in forehead. 1AM Dizzy, blood pounding in head. Pins and needles in forehead. Blank mind, difficulty responding to conversation. Pins and needles in legs. Head movement ie. lying down exacerbates numb, empty feeling in forehead. 1:45 Pressure across the back of my skull, pressure at temples, blood pounding in head. 3AM Strange sensation - pulse is stopped momentarily and several seconds later blood pounds in my forehead. Repeated for several minutes.Visual field appears to shift/ shimmer with lights off and eyes open. 4 AM Able to sleep. Monday 11/3 11AM Wake bathed in sweat, cortisol spike, mild nausea. No sense of dread. Dozing over the next couple of hours with intermittent cortisol spikes waking me. 2PM Wake up. Depressed mood, don't want to wake. 2:20 Five grains of Effexor in gel cap. Mind blank, cognition poor, awareness poor. 3 PM Eat lunch, Appetite normal. 5 PM Concentration/awareness of time passing poor. 8 PM Pins and needles in forehead. Partial cognitive window. Concentration a bit improved. Able to laugh. 8:30 Eat dinner. 5 mins exercise. 1000 IU Vitamin D. 9 PM Visual field shifting/shimmering. A bit lightheaded standing. 10:45 Pronounced heart rate. 11:00 5 mins exercise. Took 1/8 ferrous sulfate, 1/8 multivitamin tablets. Heart rhythm slightly irregular. Derealisation constant/unchanged. 11:30 Anhedonia a bit improved from prior to resinstatement. Fatigue while standing a bit improved. Cognition/awareness improved from earlier in day. 12 PM Pins and needles in forehead. A bit dizzy and sweaty. 1:45 A bit uncomfortable in my skin, not agitated but approaching agitation. Depressed mood. Some muscle fasciculations. 3:20 Light sensitivity. Pins and needles in feet and lower legs. Concentration/awareness/cognition very poor. Feeling dazed, concussed. Mild background anxiety. 4AM Loud tinnitus. Pulsating, throbbing pressure across back of head. Feeling of falling while lying down attempting sleep. Sensation of numb/empty forehead more apparent when lying down. Tuesday 12/3 11AM Cortisol, adrenaline flooding upper torso and neck. Nausea and sweating. 2:20 Five grains effexor in gel cap. Depressed mood. 3PM Marginal increase in mental clarity. 5PM Concentration/awareness of time passing poor. 7PM Concentration a bit improved. Cognition unimproved. Depersonalisation significant, don't feel present. 8PM Vision very blurry, no improvement. Pins and needles in forehead. Motivation poor. Feel stuck, spellbound in a dreamlike state. Goal setting very poor. Dizzy. 8:15 5 mins exercise. Heart rhythm slightly irregular. 8:30 Cognition poor, can perform tasks by rote but can't respond to/integrate new information. Spontaneity, problem solving, working memory poor. 9PM Eat dinner. Depressed mood, tearful. 9:30 Numbness across the back of my head. Headache behind right eye. Pins and needles localised to right forehead. 11:45 Some nerve pain in lower back, tolerable. Strong dissociation, derealisation. 12PM Facial tic. Fatigue standing slightly improved. Headache and dizziness. 12:15 A bit fatigued and shaky. Vertigo, blood rushing to head. Sweating. Vision swimming a bit. 3AM Uncomfortable slightly agitated feeling absent today - did not take vitamin D, multivitamin or iron tablet. 3:30 Pronounced strong slow heart rhythm. 4AM. Able to sleep without interruption for 7.5 hours. Wed 13/3 11:30 AM Wake with dread, cortisol, nausea. Resume dozing. 2:20 Five grains effexor in gel cap. Marginal improvement in concentration/awareness noticeable on waking. 3 PM Lunch. 5PM 5 minute walk. Very blurry vision. Looking at computer screen after exposure to natural light, light appears to pulse in intensity for several minutes. 8:30 Eat dinner. Emotional blunting a bit improved, felt momentarily happy. Concentration poor. 9:30 1000 IU Vit D. Anhedonia perhaps a bit improved. Feeling a bit less fatigued/lethargic. Cognitive fog a bit improved but struggling to find appropriate words to express myself. 12:30 AM Pupils still uneven. A bit fatigued when standing. Blood pounding in forehead. 12:45 Vertigo. !AM A bit sweaty, dizzy, blood rushing to head. Anhedonia doesn't seem much improved. Facial tic triggered by stress. Derealisation constant. Mind blank, thoughtless, very detached. Very fatigued, depressed mood. Depression severe. Pinpoints of light in visual field. 3:15 Pronounced slow heart rate. Thurs 14/3 9:30AM Wake with cortisol/adrenaline surge. Resume dozing. 2PM New symptom of headache, lightheaded sensation would get before initial discontinuation of effexor when due for next dose. 2:20 Took five grains effexor in gel cap. 4PM Concentration seems a bit improved. 4:30 Eat lunch 7PM Very low mood, depressed, motivation lacking, anhedonic. No improvement in cognitive impairment since reinstating 1 mg. Dizzy, blurry vision constant. Difficulty with language retrieval, slow thinking, difficult to express myself. Emotional blunting - unable to cry. 8:30 Emotional blunting and derealisation extreme. Things seem hazy and distant. Feeling vacant, detached, unmotivated, in a dream state. Feel slowed in thought and unresponsive. Almost as bad as prior to reinstatement of 1mg. Concentration/awareness of time passing a bit improved since earlier in the day. 9:30 5 mins exercise. 10 PM Vertigo, blood pounding in head, heat in forehead. 10:30 Very dizzy, vertigo/spinning sensation. Forehead numb, pins and needles. 12:30 5 mins exercise. Concentration and derealisation seem a bit improved. Pins and needles in forehead less noticeable. 2AM Pronounced, strong slow pulse. 4 AM Able to sleep. Friday 15/3 9AM Wake with cortisol spike due to outside noise. Dread in chest, bathed in sweat. Resume dozing with cortisol spiking intermittently. 1:45 Lightheaded, headache signals effexor dose due. 2:20 Five grains effexor in gel cap. 4PM Concentration, ability to focus a bit improved. 4:30 Eat lunch. 1/2 tsp coffee. 5PM Very dizzy, detached, strong depersonalisation/derealisation. Don't feel present or engaged when speaking to others. Able to make and understand some jokes. Hypersensitive to light and sound. 6:30 Minor confrontation with family members- very irritable and tearful. Some agitation, slight sense of adrenaline surging in lower legs. Uncomfortable in my skin. Headache. 7:30 Pressure across the back of forehead. Spontaneous behaviour a bit improved. 8PM Pins and needles in feet, a bit uncomfortable in my skin. Some tightness across forehead. Mood not too bad, ability to make spontaneous conversation a bit improved. 10:45 1000 IU Vitamin D. 5 mins exercise. Dizziness a bit improved. 11:00 Fatigue standing, very dizzy. 11:30 Lightheaded, blood pounding in head. Some bearable nerve pain in shoulder. 1:30 AM Sweating, very dizzy, vertigo, blurred vision. 1:45 5 mins exercise. A bit shaky standing. Mood very depressed. 3:45 Abnormal heart rhythm. A bit uncomfortable in my skin. Saturday 16/3 2:20 PM Five grains effexor in gel cap. 2:50 Vision noticeably blurrier, difficult to read. Focus/concentration a more impaired shortly after taking effexor. 4:30 Eat lunch. Concentration/awareness poor. Blood rushing to head. Slightly dizzy, pressure across back of head. 10PM 1/8 ferrous sulfate tablet. 5 mins exercise. Headache left temple. Noticeable rosacea after having cleared up after initial discontinuation of effexor. 10:30 Dizzy. Fatigue standing a bit improved. 11PM Mood not to bad, not anxious or depressed. Anhedonia unimproved. 12:45 AM Pins and needles across the back of head. A bit dizzy. Mind blank, difficulty finding words, not much independent thought. Emotional numbing, can't cry. 1AM Numb forehead, slightly nauseous. Executive cognitive function seems worse, repetitive, rote thinking only. Anaesthetised feeling in forehead. Visual after images with lights off, with eyes open and closed seeing afterimage of light for 5 mins. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Monty95 Posted March 20, 2019 Author Share Posted March 20, 2019 Hello Alto/Chessie Cat, Edit - I was becoming distressed about my cognitive impairment being permanent or very long term, as this hadn't appeared to change since reinstating 1mg of effexor, so I decided to increase the dose to 2mg. I thought I noticed some cognitive improvement as a result although it was subtle. The pins and needles in my forehead seem to be less pronounced and less frequent. The first night of taking 2 mg I experienced some insomnia lasting for several hours before I was able to sleep. I also experienced a consistent abnormal heart rhythm when attempting sleep which continued overnight and into the following afternoon. I saw my GP who said that symptoms arising from a dose increase should stabilise over the course of a week or so, so I decided to continue and monitor as to whether there was any improvement. The insomnia has improved, however I'm now noticing more nausea and no improvement in the abnormal heart rhythm/arrhythmias which start in the early morning and continue with some abatement in the evening the following day. I'm just wondering whether you were able to give any advice as to whether symptoms from an updose are likely to improve with time, or what kind of timeframe the dose increase could be safely stopped within? I'm a bit concerned about the consequences of maintaining the dose in terms of a permanent/chronic negative effect on cardiac function (I understand you can't really advise on this, any general advice you are able to give about stabilisation or any similar situations that have resolved would be appreciated) I will post my daily notes below, if they are of use at all? Sun 17/3 12:30 PM Lightheaded, dizzy, nauseous, as due for effexor dose. 2:05 Ten grains effexor in gel cap. 3:55 Eat lunch. 2/3 tsp coffee. Very dizzy, vision too blurry to read. 4:00 Zoning out, acute interruption of focus with accompanying visual blurring, similar to shortly after taking a full dose prior to discontinuation. Some head pressure, heat in forehead. 4:30 Cognitive fog, clarity significantly improved. Ability to make conversation offhand, responsiveness, spontaneity improved. Perhaps a bit manic/energetic. 8:30 Cognition improved, goal-setting, awareness, responsiveness to stimuli improved. Feeling perhaps 60 -70% of cognition prior to withdrawal. 10PM Blood rushing to head, throbbing. Depersonalisation perhaps a bit improved. Derealisation not improved. Dizziness, anhedonia not improved. 12:15 AM Feeling cognitively sharper, more perceptive. 1AM Pins and needles in forehead. Concentration poor. 1:30 AM 5 mins exercise. Take 1/8 ferrous sulfate tablet. Dizzy, pins and needles in forehead. 2AM A bit tense/uncomfortable. Vision slightly blurrier. 4AM Insomnia. continuous cardiac arrhythmias. 6:30 AM Able to sleep. Monday 18/3 10:30 AM Woken with cortisol, nausea. Dozing. 2:10 Ten grains of effexor in gel cap 1 PM Wake with cortisol. Concentration awareness good, better prior to dose than shortly after taking effexor. More difficulty getting ready for appointment with GP than a week or so ago. Ability to determine appropriate sequence of actions necessary, independent thought, memory, problem solving seem more impaired. Suggests that cognitive decline has continued while taking 1mg. 3PM Concentration/awareness of time passing poor. 5PM Eat dinner. 1/2 tsp coffee. 3AM Insomnia, continuous abnormal heart rhythm, pronounced heart rate and arrhythmias. 6AM Able to sleep. Tues 19/3 12:20 Lightheaded, nausea as due for effexor dose. 1PM Wake with cortisol, nausea, arrhythmias. Conscious of slow, pronounced heart rate. 2:10 Ten grains effexor in gel cap. 2:30 Eat lunch, 1/2 teaspoon coffee. 3:30 Worsened nausea 3/10. Heartbeat still irregular.Concentration/awareness worse after effexor. Acute blurring of vision and loss of focus intermittently. 5PM Heart rhythm normalised. Nausea abated. Temporary blurring of visual field and loss of focus (used to happen shortly after taking effexor when on a full dose.) 7PM Green tea 8:30 Concentration improved. Cognition seems improved from when taking 1 mg. 11:45 Pins and needles in forehead. Lessened in scale and intensity since dose increase. 12PM Concentration improved. Facial tic. Visual field swimming with eyes closed. 1AM 5 mins exercise, mild chest pain. Fatigue improved. Pins and needles in forehead. 3AM Slow, pronounced heart rhythm. Pins and needles in forehead. 4AM Able to sleep. Wed 20/3 12:20PM Waves of nausea interrupting sleep 3/10, lightheadedness, headache. 2:20 Wake, blackout curtains improved cortisol spikes throughout the morning. 2:20 10 grains effexor in gel cap. 3 PM Eat lunch. 1/2 tsp coffee. 3:45 Nausea 5/10. Heart rhythm still abnormal , palpitations. Acute visual blurring and temporary lack of focus/attention. 7PM Heart rhythm largely normalised. Green tea. 8:30PM Heart rate normal. Concentration a bit improved. Easier to respond to conversation. Still very difficult to carry out tasks requiring executive function. Difficulty writing notes as language retrieval and independent/spontaneous thought impaired. 9:30 Anxiety, cortisol, nausea 3/10. Mood depressed, memory poor. Motivation poor. 10PM Cardiac arrhythmias. Shaky standing, sweaty, a bit jittery. (Perhaps due to increase in caffeine intake) 12AM Dizziness (lightheadedness) a bit improved. Some anxiety, tightness in chest. Nausea 1/10. 12:30 Anxious, cortisol - nausea 3/10 (linked to cortisol spike?) 2AM Heart rhythm consistently abnormal over last hour or so. 2:15 Cardiac arrhythmias. I didn't experience these problems with nausea and prolonged cardiac instability when I briefly reinstated larger doses of 10 and 37.5 mg, mainly akathisia/agitation and restless legs. I'm a bit lost as to what to do now, I was hoping to be able to push the dose increase a bit further as I'm very concerned about permanent cognitive impairment, particularly as I haven't really seen improvement with this other than following a dose increase. My cognition now is perhaps 60% of what it was pre-withdrawal and this impacts greatly on my daily life - I find it difficult to imagine sustaining function at this level for years, with perhaps only marginal improvement. (Prior to taking effexor I was preparing to apply for a PhD in physics/nanotechnology, now I struggle to add numbers in my head. Maths was always a bit of a weak spot though 😕). Thankyou in advance to anybody managing to read these long posts and for any advice you are able to offer. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Monty95 Posted March 20, 2019 Author Share Posted March 20, 2019 Update - As I was attempting to sleep, I experienced a series of very prolonged arrhythmias, then felt very faint, or possibly a sudden release of adrenaline, it was very frightening and I'm wondering how I will be able to sleep or if I should perhaps drop the dose down to 1.5 or 1mg? I'm very confused and scared right now, any input or advice would be very much appreciated. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Administrator Altostrata Posted March 21, 2019 Administrator Share Posted March 21, 2019 10 hours ago, Monty95 said: I did see some progress with akathisia/agitation and anxiety decreasing following the reduction in dose, for which I'm very grateful. I've been experiencing some windows and waves in my symptoms, mainly affecting my awareness of passing time/ability to concentrate/cognitive fog. My cognitive impairment relating to executive functioning hasn't noticeably improved beyond the baseline improvement I saw after reinstating the 1 mg dose. I worry that this may become permanent if not corrected, based on studies of brain scans of antipsychotic users showing atrophy of grey matter in the prefrontal cortex, due to inhibition of dopamine innervation after just months of use. Please stop scaring yourself with these theories. There's no basis to it, you're fantasizing what's going on with your grey matter. As we've explained before, it may take some time for your nervous system to settle down from the shocks of withdrawal and overdosage. Reinstatement doesn't immediately set you right, it's a bit of a crutch so your nervous system can heal itself. See The Windows and Waves Pattern of Stabilization Vitamin D is a daytime hormone. You should take it in the morning, not at night. Taken any time, vitamin D can keep people who are very hypersensitive awake, it can be stimulating. Same with the B vitamins that may be in your multivitamin. Why are you exercising at night? You should be exercising during daylight hours, exertion can release cortisol and keep you awake. What are you doing after midnight? Do you ordinarily sleep between around 4 a.m. and noon? Is there some reason you don't sleep on a more ordinary schedule" Monty, we talked you down from 10mg Effexor, it was too much for you. I would think you would have learned a lesson not to make dramatic jumps in dosage from that. Palpitations are not a desirable effect from reinstatement. If I were you, I"d back down to 6 beads, stay there for while and keep daily notes, stop overthinking your healing. Read "Is it always going to be like this?" Withdrawal dialogues & encouragement Non-drug techniques to cope with emotional symptoms Easing your way into meditation for a stressed-out nervous system Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep Health anxiety, hypochondria, and obsession with symptoms Ways to cope with daily anxiety Let us know how you're doing with 6 beads. This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment
Moderator Emeritus Songbird Posted May 3, 2019 Moderator Emeritus Share Posted May 3, 2019 Hello Monty, you haven't posted an update in quite a while. How are things going? 2001–2002 paroxetine 2003 citalopram 2004-2008 paroxetine (various failed tapers) 2008 paroxetine slow taper down to 2016 Aug off paroxetine2016 citalopram May 20mg Oct 15mg … slow taper down2018 citalopram 13 Feb 4.6mg 15 Mar 4.4mg 29 Apr 4.2mg 6 Jul 4.1mg 17 Aug 4.0mg 18 Nov 3.8mg 2019 15 Mar 3.6mg 21 May 3.4mg 26 Dec 3.2mg 2020 19 Feb 3.0mg 19 Jul 2.9mg 16 Sep 2.8mg 25 Oct 2.7mg 23 Oct 2.6mg 24 Dec 2.5mg 2021 29 Aug 2.4mg 15 Nov 2.3mg Link to comment
Monty95 Posted May 17, 2019 Author Share Posted May 17, 2019 Hi @Songbird, Thanks very much for checking on me! I apologise for not responding earlier, I've only just noticed your post. I was seeing some improvements with the cardiac arrhythmias normalising on 7 beads so I decided to increase the dose to 9 beads in an attempt to improve my cognition. This resulted in pretty severe akathisia and nausea so I dropped the dose back down to 7 beads. Unfortunately I think I kindled myself with the cumulative dose changes so I've been experiencing akathisia, nausea, cold sweats, fast heart rate and arrhythmias for around a month which started to resolve a week or so ago. I did intend to ask for advice about reducing the dose further but I'm pretty terrified to make any changes after what I experienced from just adding two beads - the akathisia was so severe I was spending a lot of time rocking and pacing or just in the foetal position. I was also having a lot of involuntary movements, muscle spasms especially on my right side, tremor and slurred speech at times which was quite frightening. I'm experiencing extreme apathy now and a sense of not being comfortable in my body, more severe skin numbness, feeling dazed, some intermittent dizziness and a total inability to concentrate or monitor time. I'm able to sleep and eat thankfully, although I no longer really get tired or hungry, just constantly fatigued & I'm just able to force myself when its time to do so. My sense of taste and smell are very muted. Symptoms that haven't changed are very blurry vision/visual snow, dp/dr, emotional numbness/pssd, anhedonia, cortisol spikes and extreme cognitive impairment; my executive functioning is so affected it feels as though I've been lobotomised & I've totally lost my sense of self/inner monologue. I'm coming to terms with the fact that after nearly six months with no change (other than the slight improvement from reinstatement) and perhaps a 5% improvement in anhedonia, these effects are likely to be permanent or very long term. I'm not sure what to do at this point, this feels like a very meaningless & contrived existence without direction or colour, I can't really believe what has happened to me/others is within the realm of human experience, more like an unending nightmare. I think I could probably cope with the other symptoms if it weren't for the lobotomisation, I really feel as though what I thought of as 'myself' no longer exists & I'm actually nostalgic for the acute withdrawal stage when I was shaking and sweating & having intrusive suicidal thoughts because 'I' was experiencing them. This nothingness is utterly bizarre, like being halfway between being living and dead. I'm relieved that the akathisia has subsided but now life just feels like a timeless void & there's a kind of tension where I'm on the verge of panic or despair constantly at how awful the situation is but I'm unable to feel any emotion fully, so its never realised. I'm constantly obsessing over memories of how I felt prior to this where life felt three dimensional and meaningful and full of potential and I had a role in it & I threw it away out of ignorance and hubris. I didn't realise that everything that makes a person human could be stripped away so conclusively and immediately, on reflection life prior to this was a kind of bliss compared to this nothingness. & I apologise for the long & very self absorbed monologue, it doesn't really serve a purpose, its just slightly cathartic to vent . Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Moderator Emeritus Songbird Posted May 18, 2019 Moderator Emeritus Share Posted May 18, 2019 Thanks for the update, Monty. The pattern I'm seeing is that you keep changing your dose in the hope of finding a dose that will fix symptoms. Unfortunately, it really doesn't work that way. Every time a dose is changed, it upsets the nervous system. There is unlikely to be a magic dose that fixes all the symptoms. The way to get stability is to keep the same dose and then wait for as long as it takes for your system to adjust. It's actually a good sign that your akathisia has abated and you are able to sleep and eat. Now you need to be patient and let your system sort things out without continually disturbing it by changing doses. The "real" you is still in there - think of it like the way the sun can be covered by clouds on an overcast day - the sun is still there and eventually the clouds will disperse and we see the sun again. 2001–2002 paroxetine 2003 citalopram 2004-2008 paroxetine (various failed tapers) 2008 paroxetine slow taper down to 2016 Aug off paroxetine2016 citalopram May 20mg Oct 15mg … slow taper down2018 citalopram 13 Feb 4.6mg 15 Mar 4.4mg 29 Apr 4.2mg 6 Jul 4.1mg 17 Aug 4.0mg 18 Nov 3.8mg 2019 15 Mar 3.6mg 21 May 3.4mg 26 Dec 3.2mg 2020 19 Feb 3.0mg 19 Jul 2.9mg 16 Sep 2.8mg 25 Oct 2.7mg 23 Oct 2.6mg 24 Dec 2.5mg 2021 29 Aug 2.4mg 15 Nov 2.3mg Link to comment
Monty95 Posted May 31, 2019 Author Share Posted May 31, 2019 I'm feeling unbearably awful & I'm not sure how much more of this I can take. I can't get enough oxygen, I'm panicking trying to breathe, constant nausea, cold sweats, feeling of burning chemicals throughout my body, extreme agitation, feeling like I need to jump out of my skin, shaking, heart racing, muscle spasms and tremor on my right side, difficult even to force myself to eat, muscle pains in my neck and back, dizziness, fatigue, weakness & muscle wasting, I can't get out of bed, such extreme apathy I can't force myself to even move at times. I can't stop moving my right leg. My hands and feet are freezing and sweating. I can't see well , everything is extremely blurry with static. No physiological cues to eat, sleep, urinate/defecate. No pain response on my right side, the skin on my face is completely numb now. Emotions and personality have completely gone. The cognitive decline has continued, feeling confused as to where I am sometimes, completely dissociated, no sense of time passing, my forehead is heavy and aching. The nausea and akathisia started in April when I increased the dose, they continued for a month with improvements, now they've started again around the time I'm due to take the 2mg effexor but lasting for longer now throughout the day. I'm not sure if there's anything I can do, I think I've permanently worsened things by changing the dose. Its been nearly seven months now and not much has changed, it seems to be getting worse. I'm not sure why I'm writing this, I realise there's nothing anyone can do, I think this might be permanent and its a living nightmare. I can't believe I stopped taking the effexor because of some minor difficulty concentrating a few hours after the dose, I had no idea any of this was possible and now I've completely ruined my life. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Moderator brassmonkey Posted May 31, 2019 Moderator Share Posted May 31, 2019 "I realise there's nothing anyone can do" Ah, but there is.. We can give you a ton of support and reassurance that things will be okay. Which they will. This is sounding like one nasty wave, but like all waves it will pass and you will go back to feeling better. I know it's painful and scary, but the harder you fight the symptoms to more they will kick up. They aren't permanent, they just seem that way. What you need is stability, so no changing doses. Give your body time to sort thing out. ((((((((((((((((((HUGS)))))))))))))))) 20 years on Paxil starting at 20mg and working up to 40mg. Sept 2011 started 10% every 6 weeks taper (2.5% every week for 4 weeks then hold for 2 additional weeks), currently at 7.9mg. Oct 2011 CTed 15oz vodka a night, to only drinking 2 beers most nights, totally sober Feb 2013. Since I wrote this I have continued to decrease my dose by 10% every 6 weeks (2.5% every week for 4 weeks and then hold for an additional 2 weeks). I added in an extra 6 week hold when I hit 10mg to let things settle out even more. When I hit 3mgpw it became hard to split the drop into 4 parts so I switched to dropping 1mgpw (pill weight) every week for 3 weeks and then holding for another 3 weeks. The 3 + 3 schedule turned out to be too harsh so I cut back to dropping 1mgpw every 4 weeks which is working better. Final Dose 0.016mg. Current dose 0.000mg 04-15-2017 "It's also important not to become angry, no matter how difficult life is, because you can loose all hope if you can't laugh at yourself and at life in general." Stephen Hawking Link to comment
Monty95 Posted May 31, 2019 Author Share Posted May 31, 2019 I really appreciate the reassurance, its kind of you to take the time to try to help someone who probably sounds totally unhinged Unfortunately I've never felt better since the cognitive impairment/lobotomy happened in February. I can imagine certain things that aren't permanent improving or changing like the breathing and nausea but not reversing/rewiring whatever biochemical reaction occurred that made me myself. It hasn't changed at all in four months and to regain that level of complexity and function probably isn't realistic because entropy. In fact it seems to continue to decline if anything. So yeah, I've ruined my life. You only get one life and I've ruined mine. I have to laugh at it, didn't really expect to inadvertently lobotomise myself in 2019 but I suppose life is full of surprises. I would have made different choices if I knew this was how things would end. I probably would have refused to take the effexor in hospital after I had an adverse reaction instead of going along with things to be polite when pressured for one thing. & thanks for the hugs probably the only thing that make me feel temporarily better at this point. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Moderator Emeritus Gridley Posted May 31, 2019 Moderator Emeritus Share Posted May 31, 2019 2 hours ago, Monty95 said: I have to laugh at it, didn't really expect to inadvertently lobotomise myself in 2019 but I suppose life is full of surprises. There's still a sense of humor in there. I know it's hard to believe in your current situation, but the brain does have a remarkable ability to heal itself. We care about you, Monty95. Gridley Introduction Lexapro 20 mg since 2004. Begin Brassmonkey Slide Taper Jan. 2017. End 2017 year 1 of taper at 9.25mg End 2018 year 2 of taper at 4.1mg End 2019 year 3 of taper at 1.0mg Oct. 30, 2020 Jump to zero from 0.025mg. Current dose: 0.000mg 3 year, 10 month taper is 100% complete. Ativan 1 mg to 1.875mg 1986-2020, two CT's and reinstatements Nov. 2020, 7-week Ativan-Valium crossover to 18.75mg Valium Feb. 2021, begin 10%/4 week taper of 18.75mg Valium End 2021 year 1 of Valium taper at 6mg End 2022 year 2 of Valium taper at 2.75mg End 2023 year 3 of Valium taper at 1mg Jan. 24, 2024: Hold at 1mg and shift to Imipramine taper. Taper is 95% complete. Imipramine 75 mg daily since 1986. Jan.-Sept. 2016 tapered to 14.4mg March 22, 2022: Begin 10%/4 week taper Aug. 5, 2022: hold at 9.5mg and shift to Valium taper Jan. 24, 2024: Resume Imipramine taper. Current dose as of April 1: 6.8mg Taper is 91% complete. Supplements: multiple, quercetin, omega-3, vitamins C, E and D3, magnesium glycinate, probiotics, zinc, melatonin .3mg, iron, serrapeptase, nattokinase I am not a medical professional and this is not medical advice but simply information based on my own experience, as well as other members who have survived these drugs. Link to comment
Moderator Emeritus manymoretodays Posted May 31, 2019 Moderator Emeritus Share Posted May 31, 2019 (edited) Hi Monty95, No.....you don't sound unhinged to me at all. This can be really rough at times. The WD. What happened in 2019? 2 hours ago, Monty95 said: didn't really expect to inadvertently lobotomise myself in 2019 but I suppose life is full of surprises. 11 hours ago, Monty95 said: I'm feeling unbearably awful & I'm not sure how much more of this I can take. I can't get enough oxygen, I'm panicking trying to breathe, constant nausea, cold sweats, feeling of burning chemicals throughout my body, extreme agitation, feeling like I need to jump out of my skin, shaking, heart racing, muscle spasms and tremor on my right side, difficult even to force myself to eat, muscle pains in my neck and back, dizziness, fatigue, weakness & muscle wasting, I can't get out of bed, such extreme apathy I can't force myself to even move at times. I can't stop moving my right leg. My hands and feet are freezing and sweating. I can't see well , everything is extremely blurry with static. No physiological cues to eat, sleep, urinate/defecate. No pain response on my right side, the skin on my face is completely numb now. Emotions and personality have completely gone. The cognitive decline has continued, feeling confused as to where I am sometimes, completely dissociated, no sense of time passing, my forehead is heavy and aching. The nausea and akathisia started in April when I increased the dose, they continued for a month with improvements, now they've started again around the time I'm due to take the 2mg effexor but lasting for longer now throughout the day. I'm not sure if there's anything I can do, I think I've permanently worsened things by changing the dose. Its been nearly seven months now and not much has changed, it seems to be getting worse. I'm not sure why I'm writing this, I realise there's nothing anyone can do, I think this might be permanent and its a living nightmare. I can't believe I stopped taking the effexor because of some minor difficulty concentrating a few hours after the dose, I had no idea any of this was possible and now I've completely ruined my life. When did you do the reinstatement? I see that you increased the dose to 2mg of Effexor in April. And hey, just come back to my questions at another time if you want. And oooh, yes......good description of feeling unbearably awful. I'm so sorry and more than happy to help, in any way I can. Any improvement since you last posted? Are you able to just breathe......give that all your focus for a few. In for 4 seconds (or for just as long as you can, if really high fear and panic feelings), and then HOLD for 7 seconds, and then out forcefully for 8 seconds. Here's a Video that might help: I had a friend that also taught me how to find the space between the breathes too. That helped. Soothing music? Would that help? Just trying to veg on out in front of the t.v. or some other screen? In our off topic section/forum we have a place where members have put music that has helped them: Music.....what music helps you? Put it here. Also Music Therapy/Music for Wellness and Healing ^ check this one out when you feel a bit better or able, too! Sending more hugs (((((Monty95))))) And one more vid that might help, a bit, one of my personal healing favorites, it's Native American stuff. Listen if you want, don't if you don't want to right now. HEALING SONG And yes, what Gridley said. The brain is remarkable. And change is often just right around the corner. Love, peace, healing, and growth, mmt Edited May 31, 2019 by manymoretodays elaboration Late 2023- gone to emeritus status, inactive, don't @ me, I can check who I've posted on, and I'm not really here like I used to be......thanks. Started with psycho meds/psychiatric care circa 1988. In retrospect, and on contemplation, situational overwhelm. Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time). 5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014) 12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs. My last psycho med ever! Tapered @ 10% every 4 weeks, sometimes 2 weeks to 2016 Dec 16, medication free!! Longer signature post here, with current supplements. Herb and alcohol free since 5/15/2016. And.....I quit smoking 11/2021. Lapsed. Redo of quit smoking 9/28/2022. Can you say Hallelujah?(took me long enough)💜 None of my posts are intended as medical advice. Please discuss any decisions about your medical care with a knowledgeable medical provider. My success story: Blue skies ahead, clear sailing Link to comment
Moderator Emeritus manymoretodays Posted May 31, 2019 Moderator Emeritus Share Posted May 31, 2019 And oh, I see that you are another Aussie member too! How lovely. Let's have some virtual tea together too!!! What cup for you? And it is actually tea time here in the States. More or less. How about the purple one? Late 2023- gone to emeritus status, inactive, don't @ me, I can check who I've posted on, and I'm not really here like I used to be......thanks. Started with psycho meds/psychiatric care circa 1988. In retrospect, and on contemplation, situational overwhelm. Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time). 5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014) 12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs. My last psycho med ever! Tapered @ 10% every 4 weeks, sometimes 2 weeks to 2016 Dec 16, medication free!! Longer signature post here, with current supplements. Herb and alcohol free since 5/15/2016. And.....I quit smoking 11/2021. Lapsed. Redo of quit smoking 9/28/2022. Can you say Hallelujah?(took me long enough)💜 None of my posts are intended as medical advice. Please discuss any decisions about your medical care with a knowledgeable medical provider. My success story: Blue skies ahead, clear sailing Link to comment
Moderator brassmonkey Posted June 1, 2019 Moderator Share Posted June 1, 2019 "So yeah, I've ruined my life. You only get one life and I've ruined mine" Many years ago when I was in film school I took a course in writing and directing motion pictures. One of the main points that was made during the course was "there is the film you imagine in your mind, the film you write and the film that actually gets produced". Over the course of my life I have learned that this is more than true for the "life you actually live". For people making it through ADWD, we are being given a very valuable second chance at life. We have had our lives cruelly ripped apart down to the very foundations, but now we get to rebuild them with a much greater knowledge of just what is important and what isn't. We also have developed an inner strength that is amazing. After ADWD nothing will be this hard ever again. So please don't convince yourself that your life is ruined. It is changed, yes, and not what you planned, but the possibilities, oh the possibilities, and we just have to take control and make them happen. 20 years on Paxil starting at 20mg and working up to 40mg. Sept 2011 started 10% every 6 weeks taper (2.5% every week for 4 weeks then hold for 2 additional weeks), currently at 7.9mg. Oct 2011 CTed 15oz vodka a night, to only drinking 2 beers most nights, totally sober Feb 2013. Since I wrote this I have continued to decrease my dose by 10% every 6 weeks (2.5% every week for 4 weeks and then hold for an additional 2 weeks). I added in an extra 6 week hold when I hit 10mg to let things settle out even more. When I hit 3mgpw it became hard to split the drop into 4 parts so I switched to dropping 1mgpw (pill weight) every week for 3 weeks and then holding for another 3 weeks. The 3 + 3 schedule turned out to be too harsh so I cut back to dropping 1mgpw every 4 weeks which is working better. Final Dose 0.016mg. Current dose 0.000mg 04-15-2017 "It's also important not to become angry, no matter how difficult life is, because you can loose all hope if you can't laugh at yourself and at life in general." Stephen Hawking Link to comment
Monty95 Posted June 1, 2019 Author Share Posted June 1, 2019 9 minutes ago, brassmonkey said: So yeah, I've ruined my life. You only get one life and I've ruined mine" Many years ago when I was in film school I took a course in writing and directing motion pictures. One of the main points that was made during the course was "there is the film you imagine in your mind, the film you write and the film that actually gets produced". Over the course of my life I have learned that this is more than true for the "life you actually live". For people making it through ADWD, we are being given a very valuable second chance at life. We have had our lives cruelly ripped apart down to the very foundations, but now we get to rebuild them with a much greater knowledge of just what is important and what isn't. We also have developed an inner strength that is amazing. After ADWD nothing will be this hard ever again. So please don't convince yourself that your life is ruined. It is changed, yes, and not what you planned, but the possibilities, oh the possibilities, and we just have to take control and make them happen. Wow, you're very good at this . Okay, you've given me something to think about, so thank you! Its kind of difficult to put a positive spin on brain damage...& thank you to everyone for reaching out and being so lovely, I'll try to keep it together and maybe be less dramatic in future when I post. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Mentor FarmGirlWorks Posted June 1, 2019 Mentor Share Posted June 1, 2019 For the record, @Monty95, you're dramatic flair is, well, funny. It DOES feel like a lobotomy. And, while hard to believe when you are in the thick of it, it does get better. Like well said above, different. Not "better" or "worse" just different than what we might have expected but there is more perspective. @brassmonkey is right: we will never go thru something so hard again. I speak as a survivor of a 17-hour craniotomy -- so easy in comparison. Hang in there, it will get better eventually. Prozac | late 2004-mid-2005 | CT WD in a couple months, mostly emotional Sertraline 50-100mg | 11/2011-3/2014, 10/2014-3/2017 Sertraline fast taper March 2017, 4 weeks, OFF sertraline April 1, 2017 Quit alcohol May 20, 2017 Lifestyle changes: AA, kundalini yoga "If you've seen a monster, even if it's horrible, that's evidence of divinity." – Damien Echols Link to comment
Administrator Altostrata Posted June 1, 2019 Administrator Share Posted June 1, 2019 Monty, how much Effexor are you taking, at what time of day? Did you change or skip a dose recently? This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment
Monty95 Posted June 2, 2019 Author Share Posted June 2, 2019 Hi Alto, Thankyou for asking, I'm still taking 7 beads of effexor at 5PM each day, I last changed the dose in April to 9 beads for two days and then back to 7. This resulted in more heart arrhythmias and akathisia/nausea that started in the morning/early afternoon and persisted for around five hours but seemed to be lessening over a month or so. The nausea and discomfort in my body/restlessness seem to come and go throughout the day now. They're less intense, more a constant discomfort. I also have a constant tremor, fatigue, not refreshed from sleep, total loss of sense of time, loss of coordination etc. I nearly just passed out because of the nausea and pain in my spine/neck/shoulder, head pain. Symptoms don't seem to follow any daily pattern with improvement, I do notice new symptoms like eye pain, skin dryness, increasing numbness, freezing & sweating hands and feet, unable to force myself to move my limbs when needing to do so. I also had some pleasure response to music and some blunted creativity, they've gone now and I have no emotions, few thoughts. Confusion over basic tasks like how to prepare food. Total loss of personality and sense of humor/self. Now I'm unable to sleep or stay awake, I'm in a dozing groggy state for a few hours then awake, I'm drenched in sweat and shaking, I can't get warm and then I'm burning hot, my head is aching, pressure in my forehead, heart racing, can't get enough air, my eyes are burning, very uncomfortable in my body/agitated. I assume most of these symptoms are the result of a thoroughly destabilised nervous system, damage to the sympathetic nerves and the result of an neurotoxic reaction resulting in neuronal death in my prefrontal cortex. I don't know that the effexor has much affect on the symptoms except perhaps the tachycardia/nausea/akathisia? Would you recommend decreasing the dose? I thought they might improve with time but that doesn't seem to be the case, I've never felt anything remotely approaching this in my life, this is very close to unendurable. I was just wondering also if it might be possible to put a message on top of the forum in future with a short note about typical successful reinstatement windows and the risks of potentially permanent/ chronic symptoms emerging after discontinuation eg PSSD, tremor, akathisia, anhedonia, visual symptoms etc., with a caveat to open a topic if seeking guidance on your own situation? Also a warning to those considering discontinuation that brain changes as a result may be irreversible and not necessarily fixed with reinstatement and that slow tapering doesn't guarantee the absence of the emergence of tardive syndromes eg movement disorders and PSSD? Its just that I was looking for answers a few days after I stopped effexor and considering reinstatement, found the site & looked at it repeatedly throughout the next several weeks but was unsure of how to navigate it and didn't realise I could find answers by opening an introductory topic. I had seen an article by Dr Shipko on the Mad in America site saying reinstatement might make things permanently worse and didn't realise this meant after months, not days or weeks. If I had any idea of the risks I would never have stopped the drug as I was functioning very well on it, extremely happy, normal emotional range, close to no anxiety, health and sleep were perfect, just some minor issues with concentration after taking it/dizziness if I was late taking the dose. Thanks again for trying to help, I appreciate it. & apologies about the very long response. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Administrator Altostrata Posted June 2, 2019 Administrator Share Posted June 2, 2019 3 hours ago, Monty95 said: the result of an neurotoxic reaction resulting in neuronal death in my prefrontal cortex I would not assume that at all. Please update your signature with the date you reinstated x beads of Effexor. Did you ever have a bad reaction to fluxoxetine (Prozac)? This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment
Monty95 Posted June 4, 2019 Author Share Posted June 4, 2019 @Altostrata Thanks very much for your response, I've taken citalopram and escitalopram between the age of 18-30 and never experienced any side effects except possibly increased anxiety and depression. I've never taken prozac in the past. Do you think they would be helpful with mitigating cognitive effects as they're not noradrenergic? I think all of the effects of reinstating the effexor other than than a cognitive benefit were negative in terms of vision/hair loss/akathisia/nausea/heart palpitations and now lack of blood flow and sweating in my hands and feet and facial oedema which were minor problems when I was taking the effexor, stopped when I discontinued it and now have returned 10 fold. Although my cognition seems to be worsening now and I'm finding it difficult to write. The involuntary movements and tremor on my right side, feeling as though I can't stand to be in my skin & racing heart are also worsening and now I've lost some voluntary control over my fingers, toes & facial muscles on my right side. Do you think lowering the dose from 7 beads might have a beneficial effect on any of this? It also seems as though my endocrine function is completely disrupted now also as I'm experiencing fat and tissue wasting throughout my body and face as well as cortisol and adrenaline surges. I also find it difficult to tolerate showering now because the humidity seems to make me very faint and nauseous. I'll try to update my signature as you requested. Thankyou in advance for any help you are able to offer. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Monty95 Posted June 4, 2019 Author Share Posted June 4, 2019 On 6/1/2019 at 1:14 PM, FarmGirlWorks said: For the record, @Monty95, you're dramatic flair is, well, funny. It DOES feel like a lobotomy. And, while hard to believe when you are in the thick of it, it does get better. Like well said above, different. Not "better" or "worse" just different than what we might have expected but there is more perspective. @brassmonkey is right: we will never go thru something so hard again. I speak as a survivor of a 17-hour craniotomy -- so easy in comparison. Hang in there, it will get better eventually. Thanks for being so nice, & I'm very sorry to hear you are/were going through a similar experience. I'm also sorry to hear about your surgery - that must have been terrifying, glad you managed to come through it okay! In terms of the lobotomy reference I actually stick by it haha. I experienced loss of concentration/zoning out on effexor as well as feeling strangely blank a few hours after I would take the dose & I also have brain fog and loss of short term memory after stopping. However in addition to these symptoms I woke up one morning and my executive functioning had been eradicated overnight - total loss of working memory, ability to plan/carry out a plan, make sense of my environment, integrate information. Loss of sense of self/sense of humour etc. Completely numb forehead. The other symptoms can be worse or better but the lobotomy is constant - it might be chemical in origin, not surgical but I think its a pretty fitting description. I actually read an account of someone claiming to have cognitive symptoms after withdrawing from effexor just before I did so and dismissed it because I thought it sounded exaggerated and unbelievable! Its quite funny in retrospect but I remember in first year psychology looking at brain regions and their functions and the Phineas Gage example & thinking okay I might be having a bad day but at least *that* will never happen to me! I'm pretty sure I was already taking lexapro at that point and because I never noticed any effects just assumed antidepressants were benign substances, I think I fell for the marketing and had blind faith in the medical model. I also remember laughing when someone claimed they could reduce empathy in some people, simply because that hadn't been my experience. I really had no idea of how significantly or unpredictably these chemicals impact the delicate mechanism of brain/nervous system function and I'm definitely paying for that ignorance/ intellectual arrogance and complacency now. Thanks for the encouraging words though, I'll try to keep them in mind! Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Administrator Altostrata Posted June 4, 2019 Administrator Share Posted June 4, 2019 Effexor can be very difficult to go off. Switching to Prozac is one technique doctors use frequently. Still need to know when you reinstated x beads of Effexor. How do you feel today? This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment
Monty95 Posted June 5, 2019 Author Share Posted June 5, 2019 @Altostrata Yes, I remember half expecting my GP to suggest that when I asked him about stopping the effexor, as I'd read that was a common technique due to drug half life etc. I asked him about potentially bridging to another antidepressant but I think he suggested a tricyclic and at that point I decided I knew better (I didn't). I've had a look through daily notes I've made but my vision has deteriorated pretty significantly recently and I'm really finding it difficult to read/locate the information. Would an approximate date be okay? I remember it was just before/ around April 11 (as it was my sister's birthday), I increased to 9 beads for two days, then 8 beads the following day and back to 7 which I've been taking since. Unfortunately things still seem to be deteriorating in an unpredictable manner - I'm getting more frequent stabbing pains on the right side of my head with involuntary movements, as well as a constant ache and pressure in my forehead, akathisia/muscle spasms, tremor on my right throughout the night, I'm covered in hives today which is a fun new symptom, oddly I've noticed an asymmetry in my body which I haven't seen before - my hip is indented on my right when I'm standing straight, still constantly nauseous, I'm also extremely dizzy today/ visually everything is spinning and I'm unable to focus at all, my right leg gave out from under me & I became really faint when I attempted to shower. It still seems as though there is no physiological feedback to prompt any urination/defecation. My breathing has improved slightly but that's about all. Whereas before I didn't really feel hunger or thirst now I seem to be constantly thirsty in spite of how much I drink. I intended to ask about potentially substituting a low dose of vortioxetine for the effexor as I've heard it might be beneficial for cognition? (I understand you're not really in a position to make any recommendations of that nature) However, I'm really wondering at this point whether I may have had a stroke as my symptoms are resembling hemispheric paralysis with loss of control of facial muscles, fingers, toes etc. I do have an MRI booked later in the month just to check. I think I'm still just in disbelief something like this can happen as a result of a prescription medication! Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Monty95 Posted June 5, 2019 Author Share Posted June 5, 2019 The akathisia and constant movements & spasms of my right leg and shaking waking me from sleep are becoming absolutely unbearable now. I think I was able to better tolerate it initially when I was in better mental and physical condition but its too much. Also my hands and feet are dark blue and orange sweating and my nose is so swollen I really can't breathe. I think I have to reduce the effexor dose because the neurovascular problems were minor issues when I was taking it but now I have reintroduced it they're extreme. I'm also having burning pain in my neck and spine and I cant't move my head. This is all so much worse because of the cognitive impairment, its difficult to make sense of what's happening, I have no sense of passing time or ability to plan or act on a plan. Should I reduce the dose by a bead or attempt to switch to something else? I just want this to end. I really cannot believe I've done this to myself. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
Administrator Altostrata Posted June 5, 2019 Administrator Share Posted June 5, 2019 These physical symptoms are very worrisome. You're covered in hives? Are you taking anything else? If you're not taking anything else, stop the Effexor right away. I think you may need to accelerate seeing a neurologist, at least. Please let us know how you're doing. This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment
Monty95 Posted June 5, 2019 Author Share Posted June 5, 2019 @Altostrata I'm not taking anything else at the moment. Would it be safe to stop taking it entirely? The hives were on my leg but they've nearly gone away now. I had them a few times while I was taking effexor, never in my life until then, then when I stopped they immediately came back but went away over time. I've noticed that minor issues I had while taking the effexor have reappeared on reinstating but are far exaggerated. I'm worried I could make things worse if I stop taking it immediately, I'm alone at the moment and unsure of what to do. Over the last two years - Effexor Xr 150 mg daily, ferrous iron, magnesium, zinc, b12and vit d 1000 iu every couple of days. Prior to that- 2001 started citalopram 20 mg age 18, switched to escitalopram 20 mg a year or two later: 2011 - switched to paroxetine for several weeks and tapered off, replaced with lexapro. March 2014- prescribed Effexor xr 150mg daily. May 2015 prescribed 10 mg aripiprazole, concurrently with Effexor, discontinued 2-3 weeks later with abrupt taper to 5 mg then stopped. Continued taking Effexor until late November of last year- tapered rapidly over 12 days. Nothing currently. Link to comment
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