LeslieBarns Posted May 25, 2015 Share Posted May 25, 2015 .....I'm in it. I have to take sinemet (carbidopa/levodopa) every two hours - and lorazepam every 5 hrs now. i went from 15 mg of Celexa to 10 mg , 11 days ago [i listened to my doctor].....the dopa and benzo used to help a lot - not anymore. would it help to eat simple carbs to try to raise natural serotonin, or do i have to add a bit of Celexa back in? Will this lessen on its' own? thx, LB Retired in May, 2010, still working part time as Occupational Therapist in North Toronto Community Health Clinic - 6 family practice docs + vrs allied health professionals. I was resp. for home or clinic "Barrier-free" patient population, i.e. CP/MS/MD/spinal cord inj/disease pts.- independent living but requiring Attendant Care - power wheelchair dependent people/; also Seniors' Advisory Ctte./Advocacy staff liaison to Board; [received good evaluation on mandatory College of OT's practice review]. Otherwise, stayed active in bicycling, gym, yoga, walking, theatre volunteering. Enjoyed eating out in mid-level restaurants, liked my city on Lake Ontario. Enjoyed travel to Stratford, ON, time spent with friends and on farm. I was not on any Rx drugs, no health problems, but took lots of health food dietary vitamins and supplements - stupid me [same corporations, same profit motive, no regulation of product by governmental or other oversight body. I think dietary supplement SAMe either triggered or contributed to sudden and accelerating deterioration into Parkinsonism, esp. late in 2011- I have since found several scientific journal articles to support my opinion - all of my 5 doctors (family doc and 4 neurologists ignored it.) Diagnosed at two major Toronto hospitals with "Idiopathic Parkinsonism" in early 2012. Primary sympt. at that time: rigidity, spasticity, slowness, deteriorating cursive writing, shaking arms/hands, severe burning pain in feet/knees/back, severe insomnia - no tremor at that time. First Rx drug: generic sinemet [Apo-levocarb] 100/25 (3x/day) April 21, 2012. This drug was never very effective; only had ~ 1 hr ''ON" time, no matter the dose./timing. Sometimes sinemet seemed to make things worse rather than better, i.e. more muscle tone./cogwheeling/severe night sweats/low blood pressure. Next Rx drug; Zopiclone; neuro said it was NOt a benzo., but worked on same receptors, therefore she never warned me re withdrawal problems. Took it for ~ 3 years nearly every night. Seemed to work well. Third RX drug: Lorazepam. I asked Neuro for it as it seemed to make the levocarb work better and helped wth anxiety. Neuro advised it was addictive, but never explained about tolerance, withdrawal, down-regulation of receptors. I took 0.25 mg once or twice a WEEK at first and that tiny amound helped for a day at least. Fourth RX drug: Mirapex. i was still plagued by mostly "down" time with rigidity and non-movement disorders, so agreed to try Mirapex. i never got up to the therapeutic dose (near threshold) because it made me so sick and it seemed to make things worse, i.e. more muscle tone, problems with balance, severe nausea. Read manufacturer's monograph updated to 2012 and decided the risk was worth it, benefit unlikely. My self-initiated withdrawals. Every time i've changed one drug, i've had to make changes in the others too, e.g. at 20 mg Citalopram i had too much sinemet (dyskinesias) so i lowered sinemet to ~1000 mg and that was better. Also, as Citalopram has gone down, Lorazepam has had to increase 'cause it seem not to last as long or work as well. So on my own, I decided to taper off Mirapex, not knowing a thing about withdrawal problems. Whew! Thanks to zopiclone and increased frequency and dose of Lorazepam, i got off Mirapex in March 2013. Next I took myself off Zopiclone after reading very negative things about its' long-term use. I was doing this without guidance or help from MD's. I increased sinemet and lorazepam to cope with the withdrawal effects of Zopiclone. Going off Zopiclone made PD symptoms worse; neuro wanted to put me on Entacapone, but i declined it. More MD's/more problems with Rx drugs. Zopiclone withdrawal + Incr. levocarb and incr. lorazepam landed me in the ER at CAMH, where there is a priscription drug withdrawal program, so I thought they could help me. The doctor took me off Zopiclone and Lorazepam and substituted Clonazepam alone. From the first day Clonazepam caused frightening and serious side effects, like periods of amnesia, loss of balance, dizziness, memory problems, mental processing problems, serious nausea - worst was interdose withdrawal every 4 hours resulting in 'panic attacks' - i was jumping out of my skin! Another RX drug: My own neuro gave me Citalopram to help me withdraw from Clonazepam. Didnt work; after 2-3 weeks the Citalopram became a bigger problem with side effects than the Clonazepam. Neuro switched Lorazepam to replace the Clonazepam, but left me on the Citalopram. Rapid loss of 40 lbs of body weight into undernourished zone. I ended up in ER with my forehead bashed down to the bone as a result of 'syncope'; unconscious for unknown lenght of time, probably only a few minutes. Neuro threw me under the bus - now said i needed the Citalopram for depression and Lorazepam for anxiety disorder - said there was an emotional component to my complaints and made a referral to a psychiatrist. I didnt go to him, but tried to get into a addictions/withdrawal program at that hospital, did see a 5th year psych. MD there. i got copies of last few neuro/psych reports to my family doctor - I was shocked. I think the neuro/family doc were afraid i'd sue them or complain to the College of Physicians and Surgeons, so; they set up a 'defense' with psychiatric diagnosis to explain drug side effects and head injury, even suggested i might have 'psyhogenic' Parkinsonism. More self-initiated withdrawal. I decided to get off most dangerous drug first - Citalopram; it never made me feel anything other than sick and near invalid from side-effects. Have reduced dose from 20 mgs to, recently, 5 mg. Having a terrible time - every day seems new problem - today it was akathisia coming out of nowhere - took Benadryl - it helps. Nearly house-bound now. Current drugs: Citalopram (taper: 20 mg to 15 mg to 12.5 to 10 to 5 to 2.5, then zero.) 44 days at zero, getting worse side effects now than when I was 'ON' it. Apo-Levocarb, immediate release (recent dose =1500mg) =~1250mg in 10 doses/day;/2-3 levo-carb CR/day;/Lorazepam (from 1.0 mg to 2.5 or 3, or more mg/day. Benadryl as needed. Tylenol as needed to reduce 'fever' feeling in head and/or headache. Occasional Advil. Link to comment
LeslieBarns Posted May 25, 2015 Author Share Posted May 25, 2015 ...i forgot to say i have Parkinsonism and the withdrawal makes PD symp.10X worse.....!!!! thx again Retired in May, 2010, still working part time as Occupational Therapist in North Toronto Community Health Clinic - 6 family practice docs + vrs allied health professionals. I was resp. for home or clinic "Barrier-free" patient population, i.e. CP/MS/MD/spinal cord inj/disease pts.- independent living but requiring Attendant Care - power wheelchair dependent people/; also Seniors' Advisory Ctte./Advocacy staff liaison to Board; [received good evaluation on mandatory College of OT's practice review]. Otherwise, stayed active in bicycling, gym, yoga, walking, theatre volunteering. Enjoyed eating out in mid-level restaurants, liked my city on Lake Ontario. Enjoyed travel to Stratford, ON, time spent with friends and on farm. I was not on any Rx drugs, no health problems, but took lots of health food dietary vitamins and supplements - stupid me [same corporations, same profit motive, no regulation of product by governmental or other oversight body. I think dietary supplement SAMe either triggered or contributed to sudden and accelerating deterioration into Parkinsonism, esp. late in 2011- I have since found several scientific journal articles to support my opinion - all of my 5 doctors (family doc and 4 neurologists ignored it.) Diagnosed at two major Toronto hospitals with "Idiopathic Parkinsonism" in early 2012. Primary sympt. at that time: rigidity, spasticity, slowness, deteriorating cursive writing, shaking arms/hands, severe burning pain in feet/knees/back, severe insomnia - no tremor at that time. First Rx drug: generic sinemet [Apo-levocarb] 100/25 (3x/day) April 21, 2012. This drug was never very effective; only had ~ 1 hr ''ON" time, no matter the dose./timing. Sometimes sinemet seemed to make things worse rather than better, i.e. more muscle tone./cogwheeling/severe night sweats/low blood pressure. Next Rx drug; Zopiclone; neuro said it was NOt a benzo., but worked on same receptors, therefore she never warned me re withdrawal problems. Took it for ~ 3 years nearly every night. Seemed to work well. Third RX drug: Lorazepam. I asked Neuro for it as it seemed to make the levocarb work better and helped wth anxiety. Neuro advised it was addictive, but never explained about tolerance, withdrawal, down-regulation of receptors. I took 0.25 mg once or twice a WEEK at first and that tiny amound helped for a day at least. Fourth RX drug: Mirapex. i was still plagued by mostly "down" time with rigidity and non-movement disorders, so agreed to try Mirapex. i never got up to the therapeutic dose (near threshold) because it made me so sick and it seemed to make things worse, i.e. more muscle tone, problems with balance, severe nausea. Read manufacturer's monograph updated to 2012 and decided the risk was worth it, benefit unlikely. My self-initiated withdrawals. Every time i've changed one drug, i've had to make changes in the others too, e.g. at 20 mg Citalopram i had too much sinemet (dyskinesias) so i lowered sinemet to ~1000 mg and that was better. Also, as Citalopram has gone down, Lorazepam has had to increase 'cause it seem not to last as long or work as well. So on my own, I decided to taper off Mirapex, not knowing a thing about withdrawal problems. Whew! Thanks to zopiclone and increased frequency and dose of Lorazepam, i got off Mirapex in March 2013. Next I took myself off Zopiclone after reading very negative things about its' long-term use. I was doing this without guidance or help from MD's. I increased sinemet and lorazepam to cope with the withdrawal effects of Zopiclone. Going off Zopiclone made PD symptoms worse; neuro wanted to put me on Entacapone, but i declined it. More MD's/more problems with Rx drugs. Zopiclone withdrawal + Incr. levocarb and incr. lorazepam landed me in the ER at CAMH, where there is a priscription drug withdrawal program, so I thought they could help me. The doctor took me off Zopiclone and Lorazepam and substituted Clonazepam alone. From the first day Clonazepam caused frightening and serious side effects, like periods of amnesia, loss of balance, dizziness, memory problems, mental processing problems, serious nausea - worst was interdose withdrawal every 4 hours resulting in 'panic attacks' - i was jumping out of my skin! Another RX drug: My own neuro gave me Citalopram to help me withdraw from Clonazepam. Didnt work; after 2-3 weeks the Citalopram became a bigger problem with side effects than the Clonazepam. Neuro switched Lorazepam to replace the Clonazepam, but left me on the Citalopram. Rapid loss of 40 lbs of body weight into undernourished zone. I ended up in ER with my forehead bashed down to the bone as a result of 'syncope'; unconscious for unknown lenght of time, probably only a few minutes. Neuro threw me under the bus - now said i needed the Citalopram for depression and Lorazepam for anxiety disorder - said there was an emotional component to my complaints and made a referral to a psychiatrist. I didnt go to him, but tried to get into a addictions/withdrawal program at that hospital, did see a 5th year psych. MD there. i got copies of last few neuro/psych reports to my family doctor - I was shocked. I think the neuro/family doc were afraid i'd sue them or complain to the College of Physicians and Surgeons, so; they set up a 'defense' with psychiatric diagnosis to explain drug side effects and head injury, even suggested i might have 'psyhogenic' Parkinsonism. More self-initiated withdrawal. I decided to get off most dangerous drug first - Citalopram; it never made me feel anything other than sick and near invalid from side-effects. Have reduced dose from 20 mgs to, recently, 5 mg. Having a terrible time - every day seems new problem - today it was akathisia coming out of nowhere - took Benadryl - it helps. Nearly house-bound now. Current drugs: Citalopram (taper: 20 mg to 15 mg to 12.5 to 10 to 5 to 2.5, then zero.) 44 days at zero, getting worse side effects now than when I was 'ON' it. Apo-Levocarb, immediate release (recent dose =1500mg) =~1250mg in 10 doses/day;/2-3 levo-carb CR/day;/Lorazepam (from 1.0 mg to 2.5 or 3, or more mg/day. Benadryl as needed. Tylenol as needed to reduce 'fever' feeling in head and/or headache. Occasional Advil. Link to comment
Lovofsun Posted May 26, 2015 Share Posted May 26, 2015 Someone will post on here soon to tell you what is best to do... You might be best to reinstate to the dose you were on before all this happened and wait for it all to subside. A 10% tapper is best and 5mg drop is quite a shock to the system and that's why your getting all the pains ect ect.... Hang in there there is light at the end of the tunnel and nothing lasts forever 1999: amitriptyline2002: fluoxetine2003: venlafaxine2007: Paxil 20mg2012: Paxil 30mg2014 june: Paxil stopped working and was put on citalopram 20mg2014 august: docs put me on Paxil 20mg still feeling bad and had to stop antihistamines for hives2015 January: doctors put me on sertriline 50mg2015 February March: doctors wanted me to go back on Paxil 20mg2015 April 1st: I wanted off and dropped to 10mg9/5/15 Feeling worse for ware! struggling but i WILL get through this Link to comment
Moderator Emeritus Petunia Posted June 5, 2015 Moderator Emeritus Share Posted June 5, 2015 Welcome Leslie, I moved the topic you started in the symptoms forum to a Journal thread of its own. This way more people will notice it, and you can maintain your own journal. You can use this thread as your ongoing journal to track progress, write about symptoms, ask questions and communicate with the community, add to it whenever you want. You have been tapering too fast. We suggest reducing by no more than 10% of the current dose every 4 weeks, this reduces the risk of withdrawal symptoms arising. Please read through this which will explain why: Why taper by 10% of my dosage? I recommend going back up in dose, perhaps up to 13mg might be enough to relieve the withdrawal symptoms, then hold for a while until you are feeling more stable and begin a proper safe taper. See: Tips for tapering off Celexa (citalopram) How are you feeling now? Petunia. I'm not a doctor. My comments are not medical advise. These are my opinions based on my own experience and what I've learned. Please discuss your situation with a medical practitioner who has knowledge of tapering and withdrawal...if you are lucky enough to find one. My Introduction Thread Full Drug and Withdrawal History Brief Summary Several SSRIs for 13 years starting 1997 (for mild to moderate partly situational anxiety) Xanax PRN ~ Various other drugs over the years for side effects 2 month 'taper' off Lexapro 2010 Short acute withdrawal, followed by 2 -3 months of improvement then delayed protracted withdrawal DX ADHD followed by several years of stimulants and other drugs trying to manage increasing symptoms Failed reinstatement of Lexapro and trial of Prozac (became suicidal) May 2013 Found SA, learned about withdrawal, stopped taking drugs...healing begins. Protracted withdrawal, with a very sensitized nervous system, slowly recovering as time passes Supplements which have helped: Vitamin C, Magnesium, Taurine Bad reactions: Many supplements but mostly fish oil and Vitamin D June 2016 - Started daily juicing, mostly vegetables and lots of greens. Aug 2016 - Oct 2016 Best window ever, felt almost completely recovered Oct 2016 -Symptoms returned - bad days and less bad days. April 2018 - No windows, but significant improvement, it feels like permanent full recovery is close. VIDEO: Where did the chemical imbalance theory come from? VIDEO: How are psychiatric diagnoses made? VIDEO: Why do psychiatric drugs have withdrawal syndromes? VIDEO: Can psychiatric drugs cause long-lasting negative effects? VIDEO: Dr. Claire Weekes Link to comment
btdt Posted June 14, 2015 Share Posted June 14, 2015 I read your post today about Worst drugs by public citizen I like that site too good information there. I was wondering about your symptoms now... how do the Parkinsons... symptoms manifest for you? WARNING THIS WILL BE LONG Had a car accident in 85 Codeine was the pain med when I was release from hosp continuous use till 89 Given PROZAC by a specialist to help with nerve pain in my leg 89-90 not sure which year Was not told a thing about it being a psych med thought it was a pain killer no info about psych side effects I went nuts had hallucinations. As I had a head injury and was diagnosed with a concussion in 85 I was sent to a head injury clinic in 1990 five years after the accident. I don't think they knew I had been on prozac I did not think it a big deal and never did finish the bottle of pills. I had tests of course lots of them. Was put into a pain clinic and given amitriptyline which stopped the withdrawal but had many side effects. But I could sleep something I had not done in a very long time the pain lessened. My mother got cancer in 94 they switched my meds to Zoloft to help deal with this pressure as I was her main care giver she died in 96. I stopped zoloft in 96 had withdrawal was put on paxil went nutty quit it ct put on resperidol quit it ct had withdrawal was put on Effexor... 2years later celexa was added 20mg then increased to 40mg huge personality change went wild. Did too fast taper off Celexa 05 as I felt unwell for a long time prior... quit Effexor 150mg ct 07 found ****** 8 months into withdrawal learned some things was banned from there in 08 have kept learning since. there is really not enough room here to put my history but I have a lot of opinions about a lot of things especially any of the drugs mentioned above. One thing I would like to add here is this tidbit ALL OPIATES INCREASE SEROTONIN it is not a huge jump to being in chronic pain to being put on an ssri/snri and opiates will affect your antidepressants and your thinking. As I do not update much I will put my quit date Nov. 17 2007 I quit Effexor cold turkey. http://survivingantidepressants.org/index.php?/topic/1096-introducing-myself-btdt/ There is a crack in everything ..That's how the light gets in Link to comment
LeslieBarns Posted August 11, 2015 Author Share Posted August 11, 2015 In terms of Parkinsonism, overall, men outnumber women slightlly as patients, but women are more likely to report non-movmement symptoms that are sometimes incapacitating. Young people metabolize drugs more efficiently than the elderly do, the latter taking twice as long to clear a drug from the system. Yet PD specialists are called 'Movement Disorder Sprecialists' and concentrate their efforts almost entirely on the movement part of the disease. Also, drugs are developed and tested primarilly in male animals, then young healthy male humans are used for the short-term safety studies before marketing the drug (Citalopram monograph). After that, when a drug is actually marketed, it is often prescribed much more often for women than men, and older women more often than younger men or women. So, after reading the updated product monograph for Citalopram, it seemed to me that it should never be prescribed at all, but especially not on a long-term basis for older women with Parkinsonism - yet, i hear that in the centre I go to in Toronto, about 50% of patients are prescribed antidepressants of the SSRI or SNRI variety. The other 50% get a benzo. Since most patients CANT get off the drugs because of withdrawal problems, they are on them for life. Also, it is impossible to perturb one neurotransmitter (say, serotonin) without all the others reacting and changing their dynamics in response. Yet there is no manual, expert or medical help for people like me who didnt want the drug to begin with. David Healy has published a Guide to stopping Antidepressants. It is good for most people, but I emailed him that it wouldnt work for people with Parkinsonism. (He always answers me and is very gracious - he agreed with me) because the anti-depressants are also classed as drugs that can induce Parkinsonism or at least the symptoms of it- (see Worst pills, best pills list of 49 drugs that do this). Many of the drugs he lists as helpful, like older anatidepressants, or calcium channel blockers, even antihistamines, also can induce Parkinsonism-like symptoms, as can some over-the-counter drugs like Benadryl. and Gravol. Dr. Ashton recommended Benedryl for sleep in benzo withdrawal, but it interferes with dopamine and can also cause PD-like symptoms. This SSRI withdrawal has been the worst thing in my life, and often lately, i think I'm not going to survive it. Every taper of SSRI means I have to start guessing what else is going to have to change too, including diet. Protein, esp. milk proteins, affect absorption of levocarb, as does fat, stomach acid and a dozen other things, I tried Lactium 90 once at bedtime, and was still a zombie (not really awake) by 4 PM the next day. Yet I also dont 'get' the idea of taking years to taper off these drugs. They produce damage in every organ system and the longer the poison is taken, one would think the worse the damage would be, especialy in older people. None of the websites for PD deals with this. I found a PhD dissertation paper from a guy in Germany who reviewed the history of PD back to the ancients. PD was once considered a rare disease. It isnt anymore, and is not only less rare now, but many young-onset cases are cropping up. I wonder how many of these new cases are Iatrogenic (drug-induced)? I appreciate any advice from any source. Retired in May, 2010, still working part time as Occupational Therapist in North Toronto Community Health Clinic - 6 family practice docs + vrs allied health professionals. I was resp. for home or clinic "Barrier-free" patient population, i.e. CP/MS/MD/spinal cord inj/disease pts.- independent living but requiring Attendant Care - power wheelchair dependent people/; also Seniors' Advisory Ctte./Advocacy staff liaison to Board; [received good evaluation on mandatory College of OT's practice review]. Otherwise, stayed active in bicycling, gym, yoga, walking, theatre volunteering. Enjoyed eating out in mid-level restaurants, liked my city on Lake Ontario. Enjoyed travel to Stratford, ON, time spent with friends and on farm. I was not on any Rx drugs, no health problems, but took lots of health food dietary vitamins and supplements - stupid me [same corporations, same profit motive, no regulation of product by governmental or other oversight body. I think dietary supplement SAMe either triggered or contributed to sudden and accelerating deterioration into Parkinsonism, esp. late in 2011- I have since found several scientific journal articles to support my opinion - all of my 5 doctors (family doc and 4 neurologists ignored it.) Diagnosed at two major Toronto hospitals with "Idiopathic Parkinsonism" in early 2012. Primary sympt. at that time: rigidity, spasticity, slowness, deteriorating cursive writing, shaking arms/hands, severe burning pain in feet/knees/back, severe insomnia - no tremor at that time. First Rx drug: generic sinemet [Apo-levocarb] 100/25 (3x/day) April 21, 2012. This drug was never very effective; only had ~ 1 hr ''ON" time, no matter the dose./timing. Sometimes sinemet seemed to make things worse rather than better, i.e. more muscle tone./cogwheeling/severe night sweats/low blood pressure. Next Rx drug; Zopiclone; neuro said it was NOt a benzo., but worked on same receptors, therefore she never warned me re withdrawal problems. Took it for ~ 3 years nearly every night. Seemed to work well. Third RX drug: Lorazepam. I asked Neuro for it as it seemed to make the levocarb work better and helped wth anxiety. Neuro advised it was addictive, but never explained about tolerance, withdrawal, down-regulation of receptors. I took 0.25 mg once or twice a WEEK at first and that tiny amound helped for a day at least. Fourth RX drug: Mirapex. i was still plagued by mostly "down" time with rigidity and non-movement disorders, so agreed to try Mirapex. i never got up to the therapeutic dose (near threshold) because it made me so sick and it seemed to make things worse, i.e. more muscle tone, problems with balance, severe nausea. Read manufacturer's monograph updated to 2012 and decided the risk was worth it, benefit unlikely. My self-initiated withdrawals. Every time i've changed one drug, i've had to make changes in the others too, e.g. at 20 mg Citalopram i had too much sinemet (dyskinesias) so i lowered sinemet to ~1000 mg and that was better. Also, as Citalopram has gone down, Lorazepam has had to increase 'cause it seem not to last as long or work as well. So on my own, I decided to taper off Mirapex, not knowing a thing about withdrawal problems. Whew! Thanks to zopiclone and increased frequency and dose of Lorazepam, i got off Mirapex in March 2013. Next I took myself off Zopiclone after reading very negative things about its' long-term use. I was doing this without guidance or help from MD's. I increased sinemet and lorazepam to cope with the withdrawal effects of Zopiclone. Going off Zopiclone made PD symptoms worse; neuro wanted to put me on Entacapone, but i declined it. More MD's/more problems with Rx drugs. Zopiclone withdrawal + Incr. levocarb and incr. lorazepam landed me in the ER at CAMH, where there is a priscription drug withdrawal program, so I thought they could help me. The doctor took me off Zopiclone and Lorazepam and substituted Clonazepam alone. From the first day Clonazepam caused frightening and serious side effects, like periods of amnesia, loss of balance, dizziness, memory problems, mental processing problems, serious nausea - worst was interdose withdrawal every 4 hours resulting in 'panic attacks' - i was jumping out of my skin! Another RX drug: My own neuro gave me Citalopram to help me withdraw from Clonazepam. Didnt work; after 2-3 weeks the Citalopram became a bigger problem with side effects than the Clonazepam. Neuro switched Lorazepam to replace the Clonazepam, but left me on the Citalopram. Rapid loss of 40 lbs of body weight into undernourished zone. I ended up in ER with my forehead bashed down to the bone as a result of 'syncope'; unconscious for unknown lenght of time, probably only a few minutes. Neuro threw me under the bus - now said i needed the Citalopram for depression and Lorazepam for anxiety disorder - said there was an emotional component to my complaints and made a referral to a psychiatrist. I didnt go to him, but tried to get into a addictions/withdrawal program at that hospital, did see a 5th year psych. MD there. i got copies of last few neuro/psych reports to my family doctor - I was shocked. I think the neuro/family doc were afraid i'd sue them or complain to the College of Physicians and Surgeons, so; they set up a 'defense' with psychiatric diagnosis to explain drug side effects and head injury, even suggested i might have 'psyhogenic' Parkinsonism. More self-initiated withdrawal. I decided to get off most dangerous drug first - Citalopram; it never made me feel anything other than sick and near invalid from side-effects. Have reduced dose from 20 mgs to, recently, 5 mg. Having a terrible time - every day seems new problem - today it was akathisia coming out of nowhere - took Benadryl - it helps. Nearly house-bound now. Current drugs: Citalopram (taper: 20 mg to 15 mg to 12.5 to 10 to 5 to 2.5, then zero.) 44 days at zero, getting worse side effects now than when I was 'ON' it. Apo-Levocarb, immediate release (recent dose =1500mg) =~1250mg in 10 doses/day;/2-3 levo-carb CR/day;/Lorazepam (from 1.0 mg to 2.5 or 3, or more mg/day. Benadryl as needed. Tylenol as needed to reduce 'fever' feeling in head and/or headache. Occasional Advil. Link to comment
Member cymbaltawithdrawal5600 Posted August 11, 2015 Member Share Posted August 11, 2015 Leslie, Your intro topic is here, you may wish to bookmark it so you can find it anytime, because there is only one topic per member in the Introductions forum. You can add all your questions, updates and such to your topic. A mod will come along and add this post to your topic. You can add new topics to the other forums but be careful and follow the correct format if you post in Journals. What happened and how I arrived here: http://survivingantidepressants.org/index.php?/topic/4243-cymbaltawithdrawal5600-introduction/#entry50878 July 2016 I have decided to leave my story here at SA unfinished. I have left my contact information in my profile for anyone who wishes to talk to me. I have a posting history spanning nearly 4 years and 3000+ posts all over the site. Thank you to all who participated in my recovery. I'll miss talking to you but know that I'll be cheering you on from the sidelines, suffering and rejoicing with you in spirit, as you go on in your journey. Link to comment
Administrator Altostrata Posted August 11, 2015 Administrator Share Posted August 11, 2015 Leslie, I combined your new thread with your Intro topic because it seems you have questions about what you should do. As you can see above, Petunia had a good suggestion for you back in May. What are your current withdrawal symptoms? Has anything changed since May? In your most recent post, you must be referring to the drugs Dr. Healy suggests might treat withdrawal syndrome. You may notice here we don't recommend those, mainly because we haven't seen any consistent pattern of relief from them. I believe Dr. Healy includes them as "something to try" if a doctor, like himself, wants to attempt trial-and-error treatment. It sounds like you get a remarkable result from Lactium. You might want to take half a capsule instead. If it's calming and helps you sleep, all the better, right? It's a very benign substance. 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
LeslieBarns Posted October 25, 2015 Author Share Posted October 25, 2015 I went off Celexa 49 days ago and this adverse effect snuck up on me, but is getting really serious and frightening. I didn't have any idea what it was, but had a hunch it was a severe reaction to something I ate, because of the timing; I felt I couldn't breathe right as my chest muscles partly seized up, I felt like I was having a heart attack, I couldn't swallow properly, I couldn't talk properly, my abdominal muscles went into spasm, my eyesight went very blurry, my head and ears felt pressured and buzzing, I couldn't think, I had to pee about every 4 minutes, my Parkinsonism symptoms got twice as bad as usual and etc. etc. I called an ambulance to go to ER (it was a Saturday morning). The first thing I did was to take extra Sinemet (levo-carb), extra Lorazepam to try to get the chest muscles to relax, as well as some Benedryl (which is a mild SSRI). Then the ambulance came. Before going to the hospital, the ambulance guys spent quite a bit of time with me, talking, asking questions, and by then they didn't really see enough wrong with me to warrant going to ER except that I looked very dehydrated and have lost so much weight that I look like a Halloween character. I went to ER and a staff neurologist saw me. and I didn't look like I was dying to her either. She ran the usual mini blood tests, did an ECG, put me on a drip for fluids, asked some questions, etc. When the blood work et al came back, I was pretty sure she had me pegged for a "panic attack". Doctors laugh at people who go to ER with panic attacks, but then, so do family members, friends and so on. Anyway, she said I was 'Normal' and could go home. Today, Sunday, it was worse - two very bad attacks after eating regular small meals. Again, I did my own first aid (extra sinemet, extra lorazepam, Benedryl, and this time I even made up some bicarbonate of soda and drank a bit. Guess what? It worked pretty well; after a couple of hours the 'fit' subsided for the most part, but my ears are still buzzing and pressurized. Oh, and I'm scared of food now too. Now, I don't have a good relationship with my doctor(s) and I just know that they are going to say it's just panic attacks, and I need a new psychiatric prescription medication for that. My neurologist has already been trying to get me fobbed off to a Psychiatrist colleague. I'm not sure how to handle this symptom and get proper medical attention. Since withdrawal can last for months or years, I'd hate to be afraid of eating for the rest of my life. Has anyone else experienced this, or have any ideas how to handle the symptom plus the doctors, plus the family and friends? Thanks, LB Retired in May, 2010, still working part time as Occupational Therapist in North Toronto Community Health Clinic - 6 family practice docs + vrs allied health professionals. I was resp. for home or clinic "Barrier-free" patient population, i.e. CP/MS/MD/spinal cord inj/disease pts.- independent living but requiring Attendant Care - power wheelchair dependent people/; also Seniors' Advisory Ctte./Advocacy staff liaison to Board; [received good evaluation on mandatory College of OT's practice review]. Otherwise, stayed active in bicycling, gym, yoga, walking, theatre volunteering. Enjoyed eating out in mid-level restaurants, liked my city on Lake Ontario. Enjoyed travel to Stratford, ON, time spent with friends and on farm. I was not on any Rx drugs, no health problems, but took lots of health food dietary vitamins and supplements - stupid me [same corporations, same profit motive, no regulation of product by governmental or other oversight body. I think dietary supplement SAMe either triggered or contributed to sudden and accelerating deterioration into Parkinsonism, esp. late in 2011- I have since found several scientific journal articles to support my opinion - all of my 5 doctors (family doc and 4 neurologists ignored it.) Diagnosed at two major Toronto hospitals with "Idiopathic Parkinsonism" in early 2012. Primary sympt. at that time: rigidity, spasticity, slowness, deteriorating cursive writing, shaking arms/hands, severe burning pain in feet/knees/back, severe insomnia - no tremor at that time. First Rx drug: generic sinemet [Apo-levocarb] 100/25 (3x/day) April 21, 2012. This drug was never very effective; only had ~ 1 hr ''ON" time, no matter the dose./timing. Sometimes sinemet seemed to make things worse rather than better, i.e. more muscle tone./cogwheeling/severe night sweats/low blood pressure. Next Rx drug; Zopiclone; neuro said it was NOt a benzo., but worked on same receptors, therefore she never warned me re withdrawal problems. Took it for ~ 3 years nearly every night. Seemed to work well. Third RX drug: Lorazepam. I asked Neuro for it as it seemed to make the levocarb work better and helped wth anxiety. Neuro advised it was addictive, but never explained about tolerance, withdrawal, down-regulation of receptors. I took 0.25 mg once or twice a WEEK at first and that tiny amound helped for a day at least. Fourth RX drug: Mirapex. i was still plagued by mostly "down" time with rigidity and non-movement disorders, so agreed to try Mirapex. i never got up to the therapeutic dose (near threshold) because it made me so sick and it seemed to make things worse, i.e. more muscle tone, problems with balance, severe nausea. Read manufacturer's monograph updated to 2012 and decided the risk was worth it, benefit unlikely. My self-initiated withdrawals. Every time i've changed one drug, i've had to make changes in the others too, e.g. at 20 mg Citalopram i had too much sinemet (dyskinesias) so i lowered sinemet to ~1000 mg and that was better. Also, as Citalopram has gone down, Lorazepam has had to increase 'cause it seem not to last as long or work as well. So on my own, I decided to taper off Mirapex, not knowing a thing about withdrawal problems. Whew! Thanks to zopiclone and increased frequency and dose of Lorazepam, i got off Mirapex in March 2013. Next I took myself off Zopiclone after reading very negative things about its' long-term use. I was doing this without guidance or help from MD's. I increased sinemet and lorazepam to cope with the withdrawal effects of Zopiclone. Going off Zopiclone made PD symptoms worse; neuro wanted to put me on Entacapone, but i declined it. More MD's/more problems with Rx drugs. Zopiclone withdrawal + Incr. levocarb and incr. lorazepam landed me in the ER at CAMH, where there is a priscription drug withdrawal program, so I thought they could help me. The doctor took me off Zopiclone and Lorazepam and substituted Clonazepam alone. From the first day Clonazepam caused frightening and serious side effects, like periods of amnesia, loss of balance, dizziness, memory problems, mental processing problems, serious nausea - worst was interdose withdrawal every 4 hours resulting in 'panic attacks' - i was jumping out of my skin! Another RX drug: My own neuro gave me Citalopram to help me withdraw from Clonazepam. Didnt work; after 2-3 weeks the Citalopram became a bigger problem with side effects than the Clonazepam. Neuro switched Lorazepam to replace the Clonazepam, but left me on the Citalopram. Rapid loss of 40 lbs of body weight into undernourished zone. I ended up in ER with my forehead bashed down to the bone as a result of 'syncope'; unconscious for unknown lenght of time, probably only a few minutes. Neuro threw me under the bus - now said i needed the Citalopram for depression and Lorazepam for anxiety disorder - said there was an emotional component to my complaints and made a referral to a psychiatrist. I didnt go to him, but tried to get into a addictions/withdrawal program at that hospital, did see a 5th year psych. MD there. i got copies of last few neuro/psych reports to my family doctor - I was shocked. I think the neuro/family doc were afraid i'd sue them or complain to the College of Physicians and Surgeons, so; they set up a 'defense' with psychiatric diagnosis to explain drug side effects and head injury, even suggested i might have 'psyhogenic' Parkinsonism. More self-initiated withdrawal. I decided to get off most dangerous drug first - Citalopram; it never made me feel anything other than sick and near invalid from side-effects. Have reduced dose from 20 mgs to, recently, 5 mg. Having a terrible time - every day seems new problem - today it was akathisia coming out of nowhere - took Benadryl - it helps. Nearly house-bound now. Current drugs: Citalopram (taper: 20 mg to 15 mg to 12.5 to 10 to 5 to 2.5, then zero.) 44 days at zero, getting worse side effects now than when I was 'ON' it. Apo-Levocarb, immediate release (recent dose =1500mg) =~1250mg in 10 doses/day;/2-3 levo-carb CR/day;/Lorazepam (from 1.0 mg to 2.5 or 3, or more mg/day. Benadryl as needed. Tylenol as needed to reduce 'fever' feeling in head and/or headache. Occasional Advil. Link to comment
LeslieBarns Posted October 25, 2015 Author Share Posted October 25, 2015 I went off Celexa 49 days ago and this adverse effect snuck up on me, but is getting really serious and frightening. I didn't have any idea what it was, but had a hunch it was a severe reaction to something I ate, because of the timing; I felt I couldn't breathe right as my chest muscles partly seized up, I felt like I was having a heart attack, I couldn't swallow properly, I couldn't talk properly, my abdominal muscles went into spasm, my eyesight went very blurry, my head and ears felt pressured and buzzing, I couldn't think, I had to pee about every 4 minutes, my Parkinsonism symptoms got twice as bad as usual and etc. etc. I called an ambulance to go to ER (it was a Saturday morning). The first thing I did was to take extra Sinemet (levo-carb), extra Lorazepam to try to get the chest muscles to relax, as well as some Benedryl (which is a mild SSRI). Then the ambulance came. Before going to the hospital, the ambulance guys spent quite a bit of time with me, talking, asking questions, and by then they didn't really see enough wrong with me to warrant going to ER except that I looked very dehydrated and have lost so much weight that I look like a Halloween character. I went to ER and a staff neurologist saw me. and I didn't look like I was dying to her either. She ran the usual mini blood tests, did an ECG, put me on a drip for fluids, asked some questions, etc. When the blood work et al came back, I was pretty sure she had me pegged for a "panic attack". Doctors laugh at people who go to ER with panic attacks, but then, so do family members, friends and so on. Anyway, she said I was 'Normal' and could go home. Today, Sunday, it was worse - two very bad attacks after eating regular small meals. Again, I did my own first aid (extra sinemet, extra lorazepam, Benedryl, and this time I even made up some bicarbonate of soda and drank a bit. Guess what? It worked pretty well; after a couple of hours the 'fit' subsided for the most part, but my ears are still buzzing and pressurized. Oh, and I'm scared of food now too. Now, I don't have a good relationship with my doctor(s) and I just know that they are going to say it's just panic attacks, and I need a new psychiatric prescription medication for that. My neurologist has already been trying to get me fobbed off to a Psychiatrist colleague. I'm not sure how to handle this symptom and get proper medical attention. Since withdrawal can last for months or years, I'd hate to be afraid of eating for the rest of my life. Has anyone else experienced this, or have any ideas how to handle the symptom plus the doctors, plus the family and friends? Thanks, LB Retired in May, 2010, still working part time as Occupational Therapist in North Toronto Community Health Clinic - 6 family practice docs + vrs allied health professionals. I was resp. for home or clinic "Barrier-free" patient population, i.e. CP/MS/MD/spinal cord inj/disease pts.- independent living but requiring Attendant Care - power wheelchair dependent people/; also Seniors' Advisory Ctte./Advocacy staff liaison to Board; [received good evaluation on mandatory College of OT's practice review]. Otherwise, stayed active in bicycling, gym, yoga, walking, theatre volunteering. Enjoyed eating out in mid-level restaurants, liked my city on Lake Ontario. Enjoyed travel to Stratford, ON, time spent with friends and on farm. I was not on any Rx drugs, no health problems, but took lots of health food dietary vitamins and supplements - stupid me [same corporations, same profit motive, no regulation of product by governmental or other oversight body. I think dietary supplement SAMe either triggered or contributed to sudden and accelerating deterioration into Parkinsonism, esp. late in 2011- I have since found several scientific journal articles to support my opinion - all of my 5 doctors (family doc and 4 neurologists ignored it.) Diagnosed at two major Toronto hospitals with "Idiopathic Parkinsonism" in early 2012. Primary sympt. at that time: rigidity, spasticity, slowness, deteriorating cursive writing, shaking arms/hands, severe burning pain in feet/knees/back, severe insomnia - no tremor at that time. First Rx drug: generic sinemet [Apo-levocarb] 100/25 (3x/day) April 21, 2012. This drug was never very effective; only had ~ 1 hr ''ON" time, no matter the dose./timing. Sometimes sinemet seemed to make things worse rather than better, i.e. more muscle tone./cogwheeling/severe night sweats/low blood pressure. Next Rx drug; Zopiclone; neuro said it was NOt a benzo., but worked on same receptors, therefore she never warned me re withdrawal problems. Took it for ~ 3 years nearly every night. Seemed to work well. Third RX drug: Lorazepam. I asked Neuro for it as it seemed to make the levocarb work better and helped wth anxiety. Neuro advised it was addictive, but never explained about tolerance, withdrawal, down-regulation of receptors. I took 0.25 mg once or twice a WEEK at first and that tiny amound helped for a day at least. Fourth RX drug: Mirapex. i was still plagued by mostly "down" time with rigidity and non-movement disorders, so agreed to try Mirapex. i never got up to the therapeutic dose (near threshold) because it made me so sick and it seemed to make things worse, i.e. more muscle tone, problems with balance, severe nausea. Read manufacturer's monograph updated to 2012 and decided the risk was worth it, benefit unlikely. My self-initiated withdrawals. Every time i've changed one drug, i've had to make changes in the others too, e.g. at 20 mg Citalopram i had too much sinemet (dyskinesias) so i lowered sinemet to ~1000 mg and that was better. Also, as Citalopram has gone down, Lorazepam has had to increase 'cause it seem not to last as long or work as well. So on my own, I decided to taper off Mirapex, not knowing a thing about withdrawal problems. Whew! Thanks to zopiclone and increased frequency and dose of Lorazepam, i got off Mirapex in March 2013. Next I took myself off Zopiclone after reading very negative things about its' long-term use. I was doing this without guidance or help from MD's. I increased sinemet and lorazepam to cope with the withdrawal effects of Zopiclone. Going off Zopiclone made PD symptoms worse; neuro wanted to put me on Entacapone, but i declined it. More MD's/more problems with Rx drugs. Zopiclone withdrawal + Incr. levocarb and incr. lorazepam landed me in the ER at CAMH, where there is a priscription drug withdrawal program, so I thought they could help me. The doctor took me off Zopiclone and Lorazepam and substituted Clonazepam alone. From the first day Clonazepam caused frightening and serious side effects, like periods of amnesia, loss of balance, dizziness, memory problems, mental processing problems, serious nausea - worst was interdose withdrawal every 4 hours resulting in 'panic attacks' - i was jumping out of my skin! Another RX drug: My own neuro gave me Citalopram to help me withdraw from Clonazepam. Didnt work; after 2-3 weeks the Citalopram became a bigger problem with side effects than the Clonazepam. Neuro switched Lorazepam to replace the Clonazepam, but left me on the Citalopram. Rapid loss of 40 lbs of body weight into undernourished zone. I ended up in ER with my forehead bashed down to the bone as a result of 'syncope'; unconscious for unknown lenght of time, probably only a few minutes. Neuro threw me under the bus - now said i needed the Citalopram for depression and Lorazepam for anxiety disorder - said there was an emotional component to my complaints and made a referral to a psychiatrist. I didnt go to him, but tried to get into a addictions/withdrawal program at that hospital, did see a 5th year psych. MD there. i got copies of last few neuro/psych reports to my family doctor - I was shocked. I think the neuro/family doc were afraid i'd sue them or complain to the College of Physicians and Surgeons, so; they set up a 'defense' with psychiatric diagnosis to explain drug side effects and head injury, even suggested i might have 'psyhogenic' Parkinsonism. More self-initiated withdrawal. I decided to get off most dangerous drug first - Citalopram; it never made me feel anything other than sick and near invalid from side-effects. Have reduced dose from 20 mgs to, recently, 5 mg. Having a terrible time - every day seems new problem - today it was akathisia coming out of nowhere - took Benadryl - it helps. Nearly house-bound now. Current drugs: Citalopram (taper: 20 mg to 15 mg to 12.5 to 10 to 5 to 2.5, then zero.) 44 days at zero, getting worse side effects now than when I was 'ON' it. Apo-Levocarb, immediate release (recent dose =1500mg) =~1250mg in 10 doses/day;/2-3 levo-carb CR/day;/Lorazepam (from 1.0 mg to 2.5 or 3, or more mg/day. Benadryl as needed. Tylenol as needed to reduce 'fever' feeling in head and/or headache. Occasional Advil. Link to comment
Moderator Emeritus Petunia Posted October 25, 2015 Moderator Emeritus Share Posted October 25, 2015 Hi LB, Occasionally, I've heard of people having increased symptoms caused by just eating in general. You may find some ideas here: Eating as an activating factor (increasing anxiety or symptoms) Fear, terror, panic, and anxiety - Surviving Antidepressants Non-drug techniques to cope with emotional symptoms I'm not a doctor. My comments are not medical advise. These are my opinions based on my own experience and what I've learned. Please discuss your situation with a medical practitioner who has knowledge of tapering and withdrawal...if you are lucky enough to find one. My Introduction Thread Full Drug and Withdrawal History Brief Summary Several SSRIs for 13 years starting 1997 (for mild to moderate partly situational anxiety) Xanax PRN ~ Various other drugs over the years for side effects 2 month 'taper' off Lexapro 2010 Short acute withdrawal, followed by 2 -3 months of improvement then delayed protracted withdrawal DX ADHD followed by several years of stimulants and other drugs trying to manage increasing symptoms Failed reinstatement of Lexapro and trial of Prozac (became suicidal) May 2013 Found SA, learned about withdrawal, stopped taking drugs...healing begins. Protracted withdrawal, with a very sensitized nervous system, slowly recovering as time passes Supplements which have helped: Vitamin C, Magnesium, Taurine Bad reactions: Many supplements but mostly fish oil and Vitamin D June 2016 - Started daily juicing, mostly vegetables and lots of greens. Aug 2016 - Oct 2016 Best window ever, felt almost completely recovered Oct 2016 -Symptoms returned - bad days and less bad days. April 2018 - No windows, but significant improvement, it feels like permanent full recovery is close. VIDEO: Where did the chemical imbalance theory come from? VIDEO: How are psychiatric diagnoses made? VIDEO: Why do psychiatric drugs have withdrawal syndromes? VIDEO: Can psychiatric drugs cause long-lasting negative effects? VIDEO: Dr. Claire Weekes Link to comment
Administrator Altostrata Posted October 25, 2015 Administrator Share Posted October 25, 2015 Hi, Leslie, I moved your new post here as it seems very particular to your situation. As Petunia observed, it could be you have developed a sensitivity to a particular food. See Histamine food intolerance and other topics about food reactions listed in Important topics about tests, supplements, treatments, diet 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
LeslieBarns Posted November 6, 2015 Author Share Posted November 6, 2015 I tapered off Celexa about two months ago. Withdrawal symptoms have been getting worse, not better. In the last week or so, I've got a new and terrifying withdrawal symptom - apparent allergy/intolerance to any/all food and an anaphyllactic-like shock that goes with it. Rxisk's Guide to Stopping Antidepressants mentions it, but just says to try Benadryl for the allergy feelings and Zantac for the histamine feelings. Well, I tried both, and they sort of work - except that you can only take two 75 mg. zantac's a day, and reading it's side effects, it is supposed to be toxic to the brains of the elderly - SO every day I am getting wave after wave of stomach acid flooding in - my heart feels like it has stopped, my abdominal muscles as well as interior sphincters etc. all go into spasm. it feels like I cant catch my breath. It feels like a trial size of death. Then the Parkinson's symptoms because of celexa are three times worse too, so I've had to increase my levo/carbidopa dose, and lorazepam dose, just to exist. I went to ER the first time it happened and they sent me home as ok - I think the staff neurologist thought it was a "panic attack". Next time, I called a tele-health nurse and she told me to go to ER. Next time I called a home-visit doctor, and as soon as he heard the word "anti-depressant" he started to smile and call me sweety. He decided my diagnosis was "anxiety" before he even got in the room. Now my care-givers are fed up. I've got nowhere to turn. If the doctors have heard of this, they dismiss it. Most think that as soon as the drug washes out - poof you're ok. In addition to all the above, with the combination of waves of serotonin swamping me adding onto the levo/carbi-dopa i'm on, I also think I'm getting a case of Serotonin Syndrome every few hours. The heat is intolerable, it feels like my brain, mid-brain and spinal column are swelling. I get the worst headaches I've ever had. I'm getting neuropathy in my feet. My head buzzes, my ears feel pressure from within, and the ringing is awful. I get dizzy, cant walk straight, cant think, my right shoulder feels like it's had a stroke - on and on - they all yawn. Nobody I've seen, including the neurologist who prescribed it can help. Besides, it wasn't prescribed for depression, it was prescribed to help me get off clonazepam, which was prescribed to help me get off a sleeping pill (zopiclone). Now i'm officially a mental patient (instead of just a Parkinsonism patient) because it says so on my chart. See how neatly they discredit us? Anybody know of any help in Ontario, Canada? Retired in May, 2010, still working part time as Occupational Therapist in North Toronto Community Health Clinic - 6 family practice docs + vrs allied health professionals. I was resp. for home or clinic "Barrier-free" patient population, i.e. CP/MS/MD/spinal cord inj/disease pts.- independent living but requiring Attendant Care - power wheelchair dependent people/; also Seniors' Advisory Ctte./Advocacy staff liaison to Board; [received good evaluation on mandatory College of OT's practice review]. Otherwise, stayed active in bicycling, gym, yoga, walking, theatre volunteering. Enjoyed eating out in mid-level restaurants, liked my city on Lake Ontario. Enjoyed travel to Stratford, ON, time spent with friends and on farm. I was not on any Rx drugs, no health problems, but took lots of health food dietary vitamins and supplements - stupid me [same corporations, same profit motive, no regulation of product by governmental or other oversight body. I think dietary supplement SAMe either triggered or contributed to sudden and accelerating deterioration into Parkinsonism, esp. late in 2011- I have since found several scientific journal articles to support my opinion - all of my 5 doctors (family doc and 4 neurologists ignored it.) Diagnosed at two major Toronto hospitals with "Idiopathic Parkinsonism" in early 2012. Primary sympt. at that time: rigidity, spasticity, slowness, deteriorating cursive writing, shaking arms/hands, severe burning pain in feet/knees/back, severe insomnia - no tremor at that time. First Rx drug: generic sinemet [Apo-levocarb] 100/25 (3x/day) April 21, 2012. This drug was never very effective; only had ~ 1 hr ''ON" time, no matter the dose./timing. Sometimes sinemet seemed to make things worse rather than better, i.e. more muscle tone./cogwheeling/severe night sweats/low blood pressure. Next Rx drug; Zopiclone; neuro said it was NOt a benzo., but worked on same receptors, therefore she never warned me re withdrawal problems. Took it for ~ 3 years nearly every night. Seemed to work well. Third RX drug: Lorazepam. I asked Neuro for it as it seemed to make the levocarb work better and helped wth anxiety. Neuro advised it was addictive, but never explained about tolerance, withdrawal, down-regulation of receptors. I took 0.25 mg once or twice a WEEK at first and that tiny amound helped for a day at least. Fourth RX drug: Mirapex. i was still plagued by mostly "down" time with rigidity and non-movement disorders, so agreed to try Mirapex. i never got up to the therapeutic dose (near threshold) because it made me so sick and it seemed to make things worse, i.e. more muscle tone, problems with balance, severe nausea. Read manufacturer's monograph updated to 2012 and decided the risk was worth it, benefit unlikely. My self-initiated withdrawals. Every time i've changed one drug, i've had to make changes in the others too, e.g. at 20 mg Citalopram i had too much sinemet (dyskinesias) so i lowered sinemet to ~1000 mg and that was better. Also, as Citalopram has gone down, Lorazepam has had to increase 'cause it seem not to last as long or work as well. So on my own, I decided to taper off Mirapex, not knowing a thing about withdrawal problems. Whew! Thanks to zopiclone and increased frequency and dose of Lorazepam, i got off Mirapex in March 2013. Next I took myself off Zopiclone after reading very negative things about its' long-term use. I was doing this without guidance or help from MD's. I increased sinemet and lorazepam to cope with the withdrawal effects of Zopiclone. Going off Zopiclone made PD symptoms worse; neuro wanted to put me on Entacapone, but i declined it. More MD's/more problems with Rx drugs. Zopiclone withdrawal + Incr. levocarb and incr. lorazepam landed me in the ER at CAMH, where there is a priscription drug withdrawal program, so I thought they could help me. The doctor took me off Zopiclone and Lorazepam and substituted Clonazepam alone. From the first day Clonazepam caused frightening and serious side effects, like periods of amnesia, loss of balance, dizziness, memory problems, mental processing problems, serious nausea - worst was interdose withdrawal every 4 hours resulting in 'panic attacks' - i was jumping out of my skin! Another RX drug: My own neuro gave me Citalopram to help me withdraw from Clonazepam. Didnt work; after 2-3 weeks the Citalopram became a bigger problem with side effects than the Clonazepam. Neuro switched Lorazepam to replace the Clonazepam, but left me on the Citalopram. Rapid loss of 40 lbs of body weight into undernourished zone. I ended up in ER with my forehead bashed down to the bone as a result of 'syncope'; unconscious for unknown lenght of time, probably only a few minutes. Neuro threw me under the bus - now said i needed the Citalopram for depression and Lorazepam for anxiety disorder - said there was an emotional component to my complaints and made a referral to a psychiatrist. I didnt go to him, but tried to get into a addictions/withdrawal program at that hospital, did see a 5th year psych. MD there. i got copies of last few neuro/psych reports to my family doctor - I was shocked. I think the neuro/family doc were afraid i'd sue them or complain to the College of Physicians and Surgeons, so; they set up a 'defense' with psychiatric diagnosis to explain drug side effects and head injury, even suggested i might have 'psyhogenic' Parkinsonism. More self-initiated withdrawal. I decided to get off most dangerous drug first - Citalopram; it never made me feel anything other than sick and near invalid from side-effects. Have reduced dose from 20 mgs to, recently, 5 mg. Having a terrible time - every day seems new problem - today it was akathisia coming out of nowhere - took Benadryl - it helps. Nearly house-bound now. Current drugs: Citalopram (taper: 20 mg to 15 mg to 12.5 to 10 to 5 to 2.5, then zero.) 44 days at zero, getting worse side effects now than when I was 'ON' it. Apo-Levocarb, immediate release (recent dose =1500mg) =~1250mg in 10 doses/day;/2-3 levo-carb CR/day;/Lorazepam (from 1.0 mg to 2.5 or 3, or more mg/day. Benadryl as needed. Tylenol as needed to reduce 'fever' feeling in head and/or headache. Occasional Advil. Link to comment
Administrator Altostrata Posted November 6, 2015 Administrator Share Posted November 6, 2015 Leslie, I moved your new post here, to your Intro topic. Please read the earlier posts and responses in this topic. You will see that Petunia suggested an updose some time ago. Now, as you're off Celexa, reinstatement of a very low dose, perhaps 5mg, might help the withdrawal symptoms, see What is withdrawal syndrome? About reinstating and stabilizing to reduce withdrawal symptoms You would stabilize on the small dose of Celexa and then taper off by tiny amounts later. You might do well to go on an exclusion diet, to find out what foods are causing reactions. Stomach acid blockers like Zantac tend to cause more problems than they solve, see Tips for tapering off stomach acid blockers or PPIs... It's important for you to post in this thread so you can find our responses and track your progress. Please bookmark it or click the "Follow" button at the top. It sounds like you might be having a drug reaction. Please put ALL the drugs you take in the Drug Interactions Checker http://www.drugs.com/drug_interactions.html and copy and paste the results in this topic. 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
LexAnger Posted November 7, 2015 Share Posted November 7, 2015 Oh my goodness, LB, I am so sorry for the terrifying situation you are going through! I completely feel you as I'm having a very bad day myself with lots symptoms overlapping with yours even I'm still on the drug and I have been tapering super slow. It is very serious and won't subside by its own any time soon. I hope you would consider the suggestion of reinstating a small dose. Hugs to you, hang in there even it is a pure hell. You are not alone and many of us are just hang in hour by hour. Lex Drug free Sep. 23 2017 2009 Mar.: lexapro 10mg for headache for 2 weeks. 2009-2012: on and off 1/4 to 1/3 of 10mg 2012 June--2013 Jan,: 1/4-1/3 of 10mg generic, bad jaw pain 2013 Jan-Mar: 10 mg generic. severe jaw and head pain; 2013 Mar--Aug. started tapering (liquid ever since) from 10 to 5 (one step) then gradually down to 2.25 mg by July. first ever panic attack, severe head/jaw pain 2013 Aug.: back to 2.75 mg; Nov: back to Brand Lex. 2.75mg -- 3mg, 2014 June: stopped PPI, head pressure/numbness. up-dosed 4.5mg, severe reaction mental symptoms added on 2014 Aug--2015 Aug: Micro taper down to 3.2mg, .025mg (<1%) cut holding 2-3 weeks. 2015 Aug 15th, Accidental one dose of 4.2mg. worsening brain non-functional, swollen head, body, coma like, DR 2016 Feb., started dosing 10am through 11 pm everyday 2/13--3.2mg, 3/15-- 2.9mg, 4/19-- 2.6mg, 6/26--2.2mg, 7/22 --1.9mg, 8/16--1.8mg，8/31--1.7m g, 9/13--1.6mg, 9/27--1.5mg, 10/8--1.4mg, 10/14--1.3mg， 11/1--1.2mg, 11/29--1.1mg, 12/12--1mg, 12/22--0.9mg 2017: 1/7--0.8mg, 1/15--0.7mg, 1/17--0.6mg, 1/20--0.52, 1/21--0.4mg, 1/22--0.26, 1/23--0.2, 2/13--0.13mg, 2/20--0.06mg, 3/18--0.13mg, 6/1--0.12mg, 7/6--0.1mg, 7/14--0.08mg, 8/17--0.04mg, 8/20--0.03mg, 8/28--0.02mg, 9/6--0.0205mg, 9/8--0.02mg, 9/17--0.015mg, 9/20--0.01mg, 9/21--0.0048mg, 9/22--0.0001mg, Link to comment
LeslieBarns Posted April 11, 2016 Author Share Posted April 11, 2016 I haven't been onto any of my regular social network sites in a very long time; i feel like a stranger. I've been too "sick" to visit - somehow the word 'sick' doesn't capture the awful magnitude of what has happened to me. Remember, i live in Toronto and got my degree from the University of Toronto and took some of my courses at CAMH - our great Centre for Addictions and Mental Health. I'd like to do a long version of the story, but i'd lose my audience. This is the city and the two influential institutions that 10-15 years ago first hired, then fired Dr. David Healy for giving a talk in which he dared to criticize the pharmaceutical industry and SSRI's. I havent found a single, solitary doctor or nurse who hasn't drunk the pharmaceutical Cool Aid! Every time i mention to one of my health providers my belief of what has happened to me, i get another black mark in my chart, and to my face i've been made fun of by my family doctor and neurologist. The neurologist wrote in one report that instead of Parkinsonism, which SHE diagnosed, i may have Conversion Disorder!!!! or Somatic Disorder!!! Psychogenic Parkinsonism!!!! I got Parkinson-like symptoms after taking the supplement SAMe for several years. Then none of the doctors i consulted believed me until recently when i found enough proof in the scientific literature. Two years ago my neurologist put me on Citalopram to help me get off Clonazepam (Rx for Clonazepam from an idiot at CAMH because i was trying to get OFF Zopiclone). From the beginning the Citalopram gave me horrible side effects, then landed me in the hospital with a head injury - then the neurologist said in her reports (she's well known and respected here) that i needed the Citalopram because of my mental health issues, and referred me to a psychiatrist (i think she feared i was going to get a lawyer after her) and that was the fastest and easiest way to discredit me. Then i got myself off Citalopram (too fast apparently) - after 7 months off it, i still have awful side effects....guess what? in clinical trials, Citalopram gave even normal people drug-induced Parkinson's symptoms....after my last dose of it, my Parkinson's symptoms got 10X worse!....this post is getting way too long, so i'll cut to the chase. I've been referred to another, more senior neurologist at a different hospital, who specializes in advanced Parkinson's , dementia and the dreadful Atypical Parkinsonisms like multi-system-atrophy, where the patient's life span after diagnosis is 3-5 years - i just started with him and havent received a diagnosis yet. His young Fellowship student, who will be my doc, wants me back on anti-anxiety/anti-depressant medication! So, that is what can happen to an old naive fool who gobbles up supplements that are called safe and natural, and trusts her doctors to DO NO HARM. Retired in May, 2010, still working part time as Occupational Therapist in North Toronto Community Health Clinic - 6 family practice docs + vrs allied health professionals. I was resp. for home or clinic "Barrier-free" patient population, i.e. CP/MS/MD/spinal cord inj/disease pts.- independent living but requiring Attendant Care - power wheelchair dependent people/; also Seniors' Advisory Ctte./Advocacy staff liaison to Board; [received good evaluation on mandatory College of OT's practice review]. Otherwise, stayed active in bicycling, gym, yoga, walking, theatre volunteering. Enjoyed eating out in mid-level restaurants, liked my city on Lake Ontario. Enjoyed travel to Stratford, ON, time spent with friends and on farm. I was not on any Rx drugs, no health problems, but took lots of health food dietary vitamins and supplements - stupid me [same corporations, same profit motive, no regulation of product by governmental or other oversight body. I think dietary supplement SAMe either triggered or contributed to sudden and accelerating deterioration into Parkinsonism, esp. late in 2011- I have since found several scientific journal articles to support my opinion - all of my 5 doctors (family doc and 4 neurologists ignored it.) Diagnosed at two major Toronto hospitals with "Idiopathic Parkinsonism" in early 2012. Primary sympt. at that time: rigidity, spasticity, slowness, deteriorating cursive writing, shaking arms/hands, severe burning pain in feet/knees/back, severe insomnia - no tremor at that time. First Rx drug: generic sinemet [Apo-levocarb] 100/25 (3x/day) April 21, 2012. This drug was never very effective; only had ~ 1 hr ''ON" time, no matter the dose./timing. Sometimes sinemet seemed to make things worse rather than better, i.e. more muscle tone./cogwheeling/severe night sweats/low blood pressure. Next Rx drug; Zopiclone; neuro said it was NOt a benzo., but worked on same receptors, therefore she never warned me re withdrawal problems. Took it for ~ 3 years nearly every night. Seemed to work well. Third RX drug: Lorazepam. I asked Neuro for it as it seemed to make the levocarb work better and helped wth anxiety. Neuro advised it was addictive, but never explained about tolerance, withdrawal, down-regulation of receptors. I took 0.25 mg once or twice a WEEK at first and that tiny amound helped for a day at least. Fourth RX drug: Mirapex. i was still plagued by mostly "down" time with rigidity and non-movement disorders, so agreed to try Mirapex. i never got up to the therapeutic dose (near threshold) because it made me so sick and it seemed to make things worse, i.e. more muscle tone, problems with balance, severe nausea. Read manufacturer's monograph updated to 2012 and decided the risk was worth it, benefit unlikely. My self-initiated withdrawals. Every time i've changed one drug, i've had to make changes in the others too, e.g. at 20 mg Citalopram i had too much sinemet (dyskinesias) so i lowered sinemet to ~1000 mg and that was better. Also, as Citalopram has gone down, Lorazepam has had to increase 'cause it seem not to last as long or work as well. So on my own, I decided to taper off Mirapex, not knowing a thing about withdrawal problems. Whew! Thanks to zopiclone and increased frequency and dose of Lorazepam, i got off Mirapex in March 2013. Next I took myself off Zopiclone after reading very negative things about its' long-term use. I was doing this without guidance or help from MD's. I increased sinemet and lorazepam to cope with the withdrawal effects of Zopiclone. Going off Zopiclone made PD symptoms worse; neuro wanted to put me on Entacapone, but i declined it. More MD's/more problems with Rx drugs. Zopiclone withdrawal + Incr. levocarb and incr. lorazepam landed me in the ER at CAMH, where there is a priscription drug withdrawal program, so I thought they could help me. The doctor took me off Zopiclone and Lorazepam and substituted Clonazepam alone. From the first day Clonazepam caused frightening and serious side effects, like periods of amnesia, loss of balance, dizziness, memory problems, mental processing problems, serious nausea - worst was interdose withdrawal every 4 hours resulting in 'panic attacks' - i was jumping out of my skin! Another RX drug: My own neuro gave me Citalopram to help me withdraw from Clonazepam. Didnt work; after 2-3 weeks the Citalopram became a bigger problem with side effects than the Clonazepam. Neuro switched Lorazepam to replace the Clonazepam, but left me on the Citalopram. Rapid loss of 40 lbs of body weight into undernourished zone. I ended up in ER with my forehead bashed down to the bone as a result of 'syncope'; unconscious for unknown lenght of time, probably only a few minutes. Neuro threw me under the bus - now said i needed the Citalopram for depression and Lorazepam for anxiety disorder - said there was an emotional component to my complaints and made a referral to a psychiatrist. I didnt go to him, but tried to get into a addictions/withdrawal program at that hospital, did see a 5th year psych. MD there. i got copies of last few neuro/psych reports to my family doctor - I was shocked. I think the neuro/family doc were afraid i'd sue them or complain to the College of Physicians and Surgeons, so; they set up a 'defense' with psychiatric diagnosis to explain drug side effects and head injury, even suggested i might have 'psyhogenic' Parkinsonism. More self-initiated withdrawal. I decided to get off most dangerous drug first - Citalopram; it never made me feel anything other than sick and near invalid from side-effects. Have reduced dose from 20 mgs to, recently, 5 mg. Having a terrible time - every day seems new problem - today it was akathisia coming out of nowhere - took Benadryl - it helps. Nearly house-bound now. Current drugs: Citalopram (taper: 20 mg to 15 mg to 12.5 to 10 to 5 to 2.5, then zero.) 44 days at zero, getting worse side effects now than when I was 'ON' it. Apo-Levocarb, immediate release (recent dose =1500mg) =~1250mg in 10 doses/day;/2-3 levo-carb CR/day;/Lorazepam (from 1.0 mg to 2.5 or 3, or more mg/day. Benadryl as needed. Tylenol as needed to reduce 'fever' feeling in head and/or headache. Occasional Advil. Link to comment
Administrator Altostrata Posted March 18, 2019 Administrator Share Posted March 18, 2019 LeslieBarnes, how are you? 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
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