Monty95: Effexor withdrawal

[Monty95]

I called an ambulance today after I started to pass out again and the side of my face went numb with pins and needles & stabbing pains in the side of my head. As soon as I mentioned I thought the symptoms might be related to effexor withdrawal the gp registrar started to ask about anxiety/depression. Yes, I've had anxiety in the past -  no its never caused my heart to race and stop or my face to go numb. Or develop a tremor/unilateral involuntary movements. Instead of seeing a neurologist I was directed to a psychiatrist again. She actually used the term 'conversion disorder' despite the obvious tremor/spasms in my right leg & tachycardia which were attributed to anxiety yet again. If I didn't have cognitive impairments I might be able to better advocate for myself but given I can't drive due to my vision deteriorating and for lack of a better word the lobotomisation my options are limited. I suspect in part because I took the initiative to ask about alternative medications they were refused. In the past they've been pushed on me without consent - its as though doctors don't like to have their authority called into question so they tend to simply do the opposite of what's being requested of them. When I asked about stopping the effexor/replacing it she wouldn't entertain speaking about it and said I'm effectively not taking any medication as the dose is below the therapeutic threshold. I'm at a loss now, these symptoms are really unbearable and I'm becoming too weak even to get out of bed.

 

 

 

[Monty95]

I vomited earlier and not sure whether I vomited up the effexor and I only took 6 grains but now I'm unimaginably agitated, cant stop moving and shaking, burning and freezing and sweating and my neck and back have seized up and I cant see. I can barely breathe. I don't know what to do, just need this to end soon. I cant believe how much worse this gets. Should I take 7 grains again tomorrow? This is unimaginable hell.

[Monty95]

I can't sleep and my heart is racing, I have pins and needles in my hands and arms and can't stop moving them and now it feels like my chest and neck are burning. I think I need to take the 7 grains again tomorrow as this is intolerable?

[Altostrata]

Monty, this isn't good. You can stop the Effexor, you might be having a reaction to it. Please go to the hospital, tell them you're having a bad drug reaction.

[Monty95]

@Altostrata

Thank you for your concern and advice. I'm really scared to just stop the effexor entirely. I don't know if some of the new symptoms are because I reduced the dose or just part of continuing damage/destabilisation from withdrawal? I might take 6 grains as I really don't want to start vomiting again? Then reduce further?  I did explain some of my symptoms to a doctor at the hospital but they did a brief neurological exam, testing reflexes and an eye chart as well as taking my pulse and monitoring my heart rhythm and everything was within the normal range. If I say I'm having a drug reaction I won't be taken seriously as the dose is so low, a dr would tell me to just stop but I'm worried about worsening things if I stop abruptly. The movements & tremor were put down to anxiety, the other symptoms like the headache, burning skin, dizziness, pins and needles, nausea etc. don't show in tests. My heart rate was fast but attributed to anxiety. They sent me home and advised me to see a neurologist for which there will be a long wait. These symptoms are so bizarre, I'm even feeling tingling and spasming of my tongue. I accept I made a huge error stopping the effexor for which there is no help or solution. I don't think there's any drug that can help although my family are insisting I try different antidepressants & I concede this doesn't appear to be improving but much worse after 7 months now. 

[Monty95]

I didn't feel too bad today, just too apathetic and fatigued to move, was able to eat something, I took 6 grains today at 5:30 pm, its now 5 AM and I've had usual restlessness all night with tremor and leg movements, now I'm feeling extremely lightheaded and dizzy with extreme nausea, feeling of falling, my vision is also jerking around much more than usual and I can barely use the computer. My vision is much much worse. I'm seeing wavy distorted lines with afterimages. I can't afford to lose my vision also. I think my cognition is worse also, I'm feeling really confused, I this might be due to dropping the dose by a bead, I'm very scared, should I put the dose back up? I've taken 6 beads for two days now, is it safe to put the dose back up to 7 beads tomorrow? I don't know what to do?

[Monty95]

I'm also feeling slight pins and needles in my forehead which I haven't felt in months and I don't think this is a good sign. I'm worried I might do further damage by reducing the dose?

[Monty95]

I can't stop moving and it feels like it won't ever end. I have to write this to distract myself. Its worse at night. I tense up and spasm and I can't stop moving. Shaking, rocking and moving my right leg and arm. I want to jump out of my skin and it won't end. I have no sense of days or time passing its just constant present horror. I'm constantly sleeping and waking. I can't distract myself because of the anhedonia. I'm constantly thirsty and my hands and feet sweat. I'm lightheaded and feel like I'm falling and can't see. I didn't know it was possible for a human to suffer like this, it won't end, its been seven months now. 

[Monty95]

The akathisia is so much worse and I cant sleep. I can't stop moving all night without sleep. I think I need to put the dose back up. I'm sorry I cant stop posting I'm trying to distract myself. 

[Altostrata]

Monty, I'm not sure that changing the Effexor dose is going to do anything. What's been your experience with a benzo? Why were you taking aripiprazole before?

 

I know you feel terrible and not in any shape to argue with a psychiatrist, but you seem to be having some kind of adverse reaction. It may be severe withdrawal, I don't know, but withdrawal symptoms usually don't include purple feet and hives. I'm worried something else is going on.

 

If you talk to a doctor or hospital, I would not make big deal of taking 6 beads of Effexor or so. I'd say I'm recently off Effexor and having very strange physical symptoms that seem to be getting worse, including fast heartbeat, wavy vision, vomiting, swollen feet, etc.

[Monty95]

Thanks very much for your input. I know there's not a lot you can do to help but I appreciate you taking the time to ask. I've never taken a benzo before. I was prescribed aripiprazole in hospital as an adjunct to the antidepressant to treat anxiety/ocd. It didn't help with anxiety but produced a hypomania so I tapered off it. Strangely after I had withdrawal symptoms from the aripiprazole for 6 months to a year including increased episodes of anxiety and depression I never experienced any anxiety or depression after that. I felt so consistently happy I didn't think I needed the effexor/didn't believe it was having any effect because I'd changed my environment and thought patterns and attributed my lack of anxiety to that. In hindsight I think it may have been a legacy effect of the antipsychotic use and withdrawal. I think the purple feet, hives, and swollen nose are adverse reactions to the effexor, I had them start while taking it, they stopped immediately after I stopped and they came back when I reintroduced it but are now extreme. I had nausea and fast heart rate as part of what I think was a toxic syndrome that started in early February before I reintroduced it but they were improving. They improved on the effexor after I lowered the dose but now they're constant . I mentioned this to several doctors, one dismissed it due to the low dose, one said he'd have to check the box for side effects. My nervous system is completely disordered and I don't know if the akathisia and cognitive symptoms could deteriorate if I stop the dose. The tremor and movements are constant. I'm having strange pains in my forehead I think are due to lowering the dose two days ago, i'm very dizzy and my visual field is spinning. I can barely work out how to perform basic tasks to care for myself now, I was in a competitive honours program in science, tutored undergraduate students, now I genuinely struggle to work out how to wash my hair or to force myself out of bed. I struggle to speak and couldn't form a coherent sentence when I was talking to the psychiatrist in hospital. She thought I was delusional /psychotic. I've always been high functioning until I started taking effexor, anxious but I had a job and was studying full time. I'm absolutely disabled now, physically and mentally.Do you think switching to prozac or lexapro might help? My mum is pushing me to do this now. 

[Altostrata]

24 minutes ago, Monty95 said:

I think the purple feet, hives, and swollen nose are adverse reactions to the effexor, I had them start while taking it, they stopped immediately after I stopped and they came back when I reintroduced it but are now extreme. I had nausea and fast heart rate as part of what I think was a toxic syndrome that started in early February before I reintroduced it but they were improving. They improved on the effexor after I lowered the dose but now they're constant .

 

This indicates to me you have become hyper-reactive to the Effexor. Please go to the hospital, tell them you had an ALLERGIC REACTION, possibly Stevens-Johnson (this will get their attention), they can give you a bit of benzo to help calm your nervous system. No more Effexor for you.

 

I don't know if a bit of Prozac will help. Maybe. If they give you some, take it home so you can try maybe 0.5mg first.

[Monty95]

I'm so scared about stopping the effexor. I took six grains again today, I had an episode of horror/terror/anxiety unlike anything I've ever experienced. I have never felt anything like this in my life before and I can't put it into words. I was able to sleep better between 8 and 3 without akathisia and I thought maybe this was due to lowering the dose but I've been shaking and moving and sweating and unable to lie still for three hours. I can't sleep and my muscles are spasming. I'm being flooded with chemicals in my chest and neck and the urge to vomit. I feel a sense of horror, anxiety and malaise I could never have conceived of before I experienced this. My cognition seems worse now I've lowered the dose and I'm worried I'll be completely insensible if I just stop. Before I reinstated I was extremely confused with tunnel vision, unable to do the simplest task. Should I continue to taper off and take five grains tomorrow? I'm terrified if I just stop something extreme will happen.

[Altostrata]

Monty, please go to the hospital as I've said 3 times. These are not good symptoms. You are having a bad reaction to that little bit of Effexor.

[Monty95]

@Altostrata

My mum picked me up from the hospital when they wouldn't admit me, I'm staying with her now and I can't go to the hospital as she lives an hour away. I could just stop taking the effexor but I'm worried my cognition will collapse and my nervous system will be so unstable I'll never be able to reintroduce it and another drug won't help. I can barely care for myself now due to cognitive impairment, so the akathisia, nausea and lack of blood flow/sweating hands and feet might be better than being so cognitively disabled I'm unable to live independently. I know I'm hypersensitive to effexor but that might be true of all drugs at this stage? Could these symptoms settle down on their own, the hives only lasted for a day? The small amount of help with cognition was allowing me to at least do enough to get through each day until the physical symptoms became incapacitating? I'm sorry I'm questioning everything, I understand you've given the best advice you can on the basis of what I've told you and I appreciate it very much. I think you're right that the effexor is causing the restlessness because it was slightly better today on the lower dose. Ordinarily I would make a decision on my own but I find it difficult to understand or analyse any complex information now. 

[Alanmane]

Hello friend, I am sorry to read what is happening to you, effexor is a demon to eliminate, it is incomprehensible how difficult it is, I have been reducing it from 150mg to 37.5mg for a year now, at this point I feel quite bad, even though I am functional with a lot of effort , I am sure that the cognitive worsening that you feel is because of WD, in my case I know that it is so, added to my concern for all this that lasts so long and will last much longer. Only if you know that there are more people struggling to get out of effexor and we will achieve it, it is very important to be clear that this will be achieved.

[Monty95]

@Alanmane

Thanks so much for the kind words. I feel so stupid now I thought I could stop taking it in less than two weeks! I was expecting to have a difficult few weeks and then go back to being myself. Now I realise its not that simple and I've likely done permanent damage to my brain. I wish now I had never attempted to stop taking it. Or had ever started taking it in the first place. I sympathise very much with everything you're going through, its amazing that you're managing to be functional while reducing your dose! I really hope you're able to stabilise on your dose and things improve for you soon.

[Alanmane]

19 minutes ago, Monty95 said:

@Alanmane

Muchas gracias por las amables palabras. ¡Me siento tan estúpida ahora que pensé que podría dejar de tomarla en menos de dos semanas! Esperaba tener unas pocas semanas difíciles y luego volver a ser yo mismo. Ahora me doy cuenta de que no es tan simple y es probable que haya hecho un daño permanente en mi cerebro. Ojalá nunca hubiera intentado dejar de tomarla. O nunca había empezado a tomarlo en primer lugar. Simpatizo mucho con todo lo que está pasando, ¡es increíble que esté logrando ser funcional mientras reduce su dosis! Realmente espero que pueda estabilizar su dosis y que las cosas mejoren pronto.

Thank you for showing interest and fighting through this great forum. Hear one thing, even if you think your brain has been damaged, it's not like that. Believe me I have been much worse than now when I quickly reduced effexor in the past, I could not do anything literally, like a vegetable without physical or mental energy to read a sentence and understand it, being in that state you think it will always be like that but it is a lie. When we are suffering it is easy to believe that it is permanent but it is a deception, it is going to be better. Be clear that leaving in two weeks effexor is something brutal and that you feel in hell is what is expected for most people, if you are very agitated I would use a benzo (please see next post) as an exception. Will improve.

 

Edited June 8, 2019 by ChessieCat
added note

[ChessieCat]

 

10 minutes ago, Alanmane said:

if you are very agitated I would use a benzo

 

@Alanmane

 

Please do not make drug suggestions.

[Alanmane]

14 minutes ago, ChessieCat said:

 

 

@Alanmane

 

Por favor no hagas sugerencias de drogas.

I have said having read the recommendation of Alto, he has suggested a bit of benzo also a few posts before, I am not mod but I have a long experience in these matters, I have suggested what Alto suggested. Anyway, I will not do it anymore.

[Monty95]

@Alanmane

I really appreciate you trying to help. I understand you're struggling too. I've felt like this for a long time now and its difficult to believe it will ever get better. I've never experienced anything like this and the cognitive impairment doesn't seem to change at all. If you have times when you're feeling better that sounds like a good sign at least! I know how difficult it is & yes, I hate effexor too! Thankyou for the encouragement and advice anyway  

[ChessieCat]

34 minutes ago, Alanmane said:

I have said having read the recommendation of Alto, he has suggested a bit of benzo also a few posts before

 

Some members might not have read or remembered Alto's suggestion.  If you wish to remind the member of what a mod has said, please either quote the portion of the post (select the comment and wait for Quote Selection to appear and click on it) where the mod said it or mention the mod's name.

 

Thank you. 🙂

[Monty95]

The restlessness and nausea are much worse today. I haven't been able to stop moving for 7 hours. I think this might be linked to lowering the dose. I suppose there's nothing I can do. I'm scared to put the dose back up or to drop it further now. I'm worried about taking a benzo as I don't want further symptoms from that . Maybe that's my only option now. 

[Monty95]

@Altostrata

 

I took 7 grains of effexor today as I was panicked about my cognition worsening. The restlessness starts at 3 AM every morning and lasts until 10 or 11 and I take the effexor at 6 PM. It affects whole body and I can't stop moving my legs and torso and shaking with the muscles in my right leg spasming. If it follows this pattern does that indicate it is linked to the effexor dose? I don't know what to do, I'm worried if I stop immediately my cognition will worsen drastically, I've felt pins and needles in my forehead since I dropped the dose by one bead and I feel as though I'm struggling to write now. Do you think if I dropped the dose to four or five beads that could stop the akathisia? Every day I wake up and realise there is nothing in my head and I've effectively lobotomised myself feels like a nightmare and I'm worried it could get worse but the akathisia is really unbearable. Could everything worsen if I stop the effexor abruptly, should I introduce another drug first or will this complicate things? 

[Monty95]

The restlessness stopped enough for me to sleep after three hours but now I keep being flooded with cortisol and the urge to vomit. I don't know if this is because I put the dose back up. 

[Monty95]

I can't stop moving again, I'll stop posting, I'm sorry I think I'm doing this to try to distract myself.

[Altostrata]

Chessie, I had suggested a bit of benzo.

 

6 hours ago, Monty95 said:

The restlessness starts at 3 AM every morning and lasts until 10 or 11 and I take the effexor at 6 PM. It affects whole body and I can't stop moving my legs and torso and shaking with the muscles in my right leg spasming. If it follows this pattern does that indicate it is linked to the effexor dose?

 

It would have been so helpful if you had explained your symptom pattern earlier. The last we saw was in March.

 

Does the restlessness start at 3 a.m. and last until 10-11 AM or 10-11 PM? Do you feel better or worse after you take Effexor in the evening? Did you vomit before or after you took Effexor?

 

I'm not sure what to suggest, Monty. I don't know what little bit of Effexor is doing. I think you need something to calm your nervous system down, such as a benzo or maybe 1mg-5mg lamotrigine, but you need to talk to a doctor for that. I don't know if you should stop Effexor and substitute 1mg Prozac --- I don't know if that will make you better or worse.

 

As I'm in California, I can't do anything else but make suggestions, and I don't know what will work. It sounds to me like you need a doctor's attention, their guess is as good as mine at this point. Whatever they give you, insist you start at a very low dose. If possible, take a pill home to titrate it.

 

What do you have there for emergency services? Do you have Urgent Care clinics? Can you see your doctor ASAP? Did you tell your doctor about the shaking and spasming? Why did the hospital not accept you?

[Monty95]

@Altostrata

I understand I'm putting you in a difficult position asking for help without much information to go on. I appreciate your feedback I've noticed over the last few days the agitation and tremor start around 3AM and last until mid morning. I thought the effects of increasing then dropping the dose were improving, then they plateaued, then the tremor and restlessness came back overnight and continued to worsen. I don't notice any difference after taking the effexor but I do seem to have far more symptoms overnight, nausea, feeling of falling, fast heart rate etc. Before I came off the full dose I did notice I would have a period of a few hours where I couldn't concentrate but I don't notice anything like that now. I think I vomited because I had stomach pain, I really can't empty my bowels at all now,  while taking the effexor I had diarrhoea/constipation for hours every day. I thought this might be related to the effexor but my GP said it wasn't possible as it had worsened over time. I was shaking and having muscle spasms and tremor in the hospital but because I was worried I was having a stroke at the time the emergency department did some basic neurological tests and said it was unlikely that was the case. They said they couldn't prescribe psychiatric medications and I'd need to address that with my GP. My mum insisted I see a psychiatrist who saw the movements and tremor but she said I'd need to organise a neurology appointment to exclude that as a cause before a psychiatrist could treat my conversion disorder/delusions. I'm not sure why she thought anxiety was manifesting as a unilateral tremor/muscle spasms when I explained all the symptoms started when I stopped the effexor. She asked me why I thought that might be, as though it were delusional, when I said it was part of a drug withdrawal syndrome or a late onset movement disorder she said she knew what tardive dyskinesia was, I didn't have it and it was impossible to get a movement disorder from an antidepressant. Even though my mum told them I was suicidal, she said they only have beds for psychiatric patients I'd lose my independent living skills in hospital and all they could do would be to sedate me. I  can't get out of bed now though and I'm getting weaker. I think my mum will take me to see a doctor during the week, I did tell him about akathisia but I don't think he understood how bad it is and at the time I didn't want to take a sedative. I thought this might improve with time but it only seems to get worse. Its 5AM now and the movements and shaking and sweating are bad now but maybe slightly better than yesterday, I'm not vocalising with the agony I'm just trying to breathe through it. I don't know if this is because I lowered the dose then put it back up two days ago, maybe there is less effexor in my system?

[Monty95]

Its getting much worse now, I don't think it has improved at all.

[Altostrata]

Monty, I have requested your symptom pattern in a specific format several times. I ask for it repeatedly because that's what I want to see.

 

I am struck by your declining to provide it.

 

If you want, you can give the doctors these papers:

 

 

 

Every single one of them mentions akathisia, etc. as antidepressant withdrawal symptoms.

 

I can't figure out your symptoms. They sound very dramatic. Not sure if maybe you should try a switch to fluoxetine (Prozac) now, or add a benzo to the Effexor for a short time. If you decide to try Prozac, be sure to get the drops, if available, or maybe 10mg capsules from which you can make a liquid at home so you can start with 1mg.

[Monty95]

@Altostrata 

I can provide a symptom pattern if you think it would be helpful but now its just the tremor, akathisia, muscle spasming from 3AM to around 10 AM in the morning. I sleep from around 9 AM to 1 AM. Then lie there moving all night. I don't get tired just constantly fatigued. I also keep being flooded with cortisol/adrenaline fast heart rate , cold sweats and an urge to vomit intermittently overnight. The sweating, swollen hands and feet seem to be worse overnight, maybe this is just because I'm in bed and the sheets are damp. The hardened skin on my nose and forehead are constant and I think this is due to hyper reactivity to the effexor. The  intermittent weightless/falling feeling and moving visual field overnight I think is related to the change in effexor dose. I feel reduced physiological cues to urinate/defecate and I can empty my bowels every couple of days, this is unusual for me because I used to have diarrhoea and constipation every day for around an hour since I started taking an antidepressant and it got much worse with the effexor, before I stopped taking it, it was around two hours daily. During the day I feel too weak, anhedonic and apathetic to move, I get up and eat breakfast and shower and that is all I can force myself to do. The apathy started around a month ago. The cognitive impairment and visual snow are constant. I was experiencing stabbing pains in the side of my head but they have stopped now. I think perhaps I should switch to prozac because I'm scared to take a benzo. I always tolerated lexapro in the past so maybe I should try that? If I switch to prozac should I just change in one day or taper off the effexor? Do you think I should perhaps also try to get a script for lamotrigine if this would help to calm my nervous system if needed, I've heard this can be used as a treatment for visual snow? Thankyou for providing the links, my GP is understanding and trying to help but I think he is confused by this and doesn't think effects from drug withdrawal can last for more than a few weeks. I'm sure he would be willing to give me a prescription for prozac and perhaps a benzo, possibly not the lamotrigine though.

[Altostrata]

Not sure what's going on here. I've requested your symptom pattern repeatedly.  I'm past that now.

 

Please work with your doctors.

[DogLover]

i just read your thread and want to make sure you know that you will get better. there is no permanent damage.

 

as per alto's instructions i hope you are able to get to a hospital.

 

this sounds silly, but you are an inspiration to others on sa following your journey. please know that you are not alone and that others are struggling with you.

[Lloyd]

Hi Monty, just wanted to reach out to you. As per DogLover's comments your not alone. Feel free to reach out via private message.

[Smokeandmirrors22]

Keeping you in our thoughts Monty, please update us when you can.

[Monty95]

Thanks to everyone for being so nice and asking how I am. I just wanted to complain here as I don't really have anyone I can talk to about this  . Just really need to vent.

 

Today might be the worst day of my life with the exception of the day I woke up and I noticed my executive functioning was gone. Last night I woke with a bizarre feeling on the left side of my brain and an extreme headache and nausea and feeling even more confused than usual. I had a pre planned MRI today and there was an abnormality so I was taken to have a CT with contrast although I really didn't want to have do this. Apparently I've now had a series of small strokes in my left cerebellum which probably started after I had the nerve pain in my shoulders and back as I've blocked the vertebral supply to my brain on both sides, one was completely occluded and partially occluded on the other side.

 

I'm getting phrases and words confused now. I used to be intelligent. Sounds arrogant but not really as I'm cognitively disabled now so its like I'm talking about another person. Might explain the constant muscle movements and tremor on my right side recently also. Now I can't walk, my right leg won't orient and is collapsing under itself. Its actually somewhat amusing that two strokes haven't caused anywhere near the functional damage effexor has in terms of cognition though 

 

Tried to explain I had zaps and burning pins and needles there a day or two after stopping the effexor and pain since but since I have a psychiatric history with anxiety I think its dismissed as hysterical. Apparently this usually happens to athletes with major trauma/injuries. I've apparently got it from the combination of effexor withdrawal and lying in bed.

 

The neurologist was asking how I'd sustained the shear force injury but all I've been doing is sleeping. & I look depressed and zombie like with flat affect, shaking, slurring my speech and can barely string a sentence together or muster up the energy to move. I was never, ever like this, had some anxiety in the past but I've never been anhedonic or flat and lifeless, was always sharp and funny and outgoing and deeply, deeply emotional.

 

I'm 34, was in perfect health my whole life before this happened, very low blood pressure, very low cholesterol, athletic, exercised nearly every day and felt great, didn't even have any anxiety for five years. & I know its vain but was young looking for my age, a psychiatrist I saw in february wrote in my notes I looked and seemed much younger, asked me if I was still studying. I felt so good, exercised regularly, did pilates, supplemented, was vegan, never smoked or drank alcohol, felt pretty amazing and energetic every day, mentally and physically with the exception of some GI issues which were more of an annoyance.

 

Now I've had two strokes within a week and I'm being put on clopidogrel which is giving me pretty extreme stomach pain and its worse as I've been constipated for weeks which is again due to effexor withdrawal. I also have total insomnia now. So I'm suggested to take a ppi for the pain and constipation and then more psychiatric meds to put me into a drugged coma state to try to counteract the anhedonia and apathy from this brain injury, when the slight emotional numbing effexor effects had worn off long ago and I was just in a great mood as I was living independently and had made changes in my thinking patterns and routines, eliminated some stressful relationships and pressures.

 

I've always been ME my entire life, always had the same sense of humour, thinking and interests, despite changes in mood or anxiety. My mind was a source of endless amusement, I used to lie awake at night thinking about philosophical arguments or scientific questions like interpretations of quantum theory and just the magical feeling of being alone in the universe and picturing myself floating out through the milky way and the scale of everything and the wonder of just existing at all.  Or I'd dream about a piece of music and wake up and try to arrange it in my mind, obsess over pictures I wanted to take and how I'd frame the light and composition.

 

I had such a strong sense of myself evolving over time with reference to my past and plans for the future. I thought I wanted to live forever as there were endless books to read and art and landscapes to look at and people to speak to and I could never get enough of them all. My mind is completely blank now and I do not know how I can survive in this boring pain filled void. I used to regularly feel butterflies at strangers or the the way streetlights hit the rain at night  and overcome with intense love for my family, the feeling of hugging someone or a touch on my forehead would make me tingle and feel like I was floating. 

 

To be numb in every sense is inhuman, I thought my mind was me, to have it eradicated but still continue to exist with just audio and grainy visuals is a unique torture. It feels like my health is deteriorating as rapidly as somebody in their 80's. My 89 year old grandfather died last year from bowel cancer and actually his quality of life was relatively good until he passed away - cognitively he was very sharp, his vision was good, had a lot to do in the day, was never confined to bed until he was hospitalised. 

 

Every part of my body now hurts/ is uncomfortable - my head aches, its difficult to breathe, my stomach aches, my skin and eyes burn and are numb, the blocked arteries are extremely painful, I can't stop moving, I'm saturated with sweat and can't move my neck and I'm worried about the pain and positions because at this point I'm scared I'lI have another stroke in the night and it will be fatal or devastate what little cognitive function I have remaining.

 

I'm too weak and apathetic to get out of bed but I know I have to move because I'm frightened this might actually kill me now if something doesn't change. I don't know if this is due to androgen receptor subsensitivity or a hypersensitivity reaction to effexor but all of the fat and muscle are wasting from my face, my skin is coarsening and thickening, my nose is so swollen and hard I can't breathe, my sinuses are blocked so I have to breathe through my mouth, even my chin is swelling/hardening and the skin on my body is hardening. So much so its very uncomfortable to have clothes touch me. 

 

I asked the doctors in ED but their response was to look at me strangely as I'm only taking 2mg effexor and they just they didn't know. All the tissue from my lips is gone and they're dry and swollen and burning. Nearly all of my hair has fallen out now, my muscles are all wasted, my mouth is so dry, my gums are inflamed and receding & I'm having serious dental issues. My eyes have sunk back in my head, I've lost muscle tone on one side of my face and I look cognitively impaired with flat affect. My breast tissue has wasted my fat has been redistributed from my hips and thighs to my stomach so clearly some bizarre hormonal things going on there. 

 

I'm unrecognisable from a month ago. & now I can see how the way you look & present yourself really matters in how you're treated by other people. I always had issues with my appearance and within the last few years was finally able to be relaxed about it and like myself for who I was and realise it wasn't important but this is a bit much to take, although it doesn't upset me as I can't really feel any emotion any longer. I'm in pain every day, too weak and apathetic and anhedonic to look anyone in the eye or smile, its an effort to talk & it seems to get much worse, even a few weeks ago I was still able to laugh and enjoy music, talking to people and had some blunted creativity and now I've had a flipping stroke and feel even more confused and cognitively impaired. 

 

My dad came in to see me and we haven't spoken in years and he basically said I'd  always been arrogant in thinking I knew better than others and that this wouldn't respond to antidepressant treatment or being admitted to a psych ward and I've always had mental health issues and none of this could possibly be due to effexor withdrawal. Its more hurtful because he's a GP and he brought home a sample pack of cipramil one day and  basically pressured me into taking the antidepressant at 18 in order to live in his house as he couldn't tolerate me crying. I said I wished I'd never started taking them and his response was that I had no other choice after I cried every night for a fortnight. I really don't think think antidepressants should be used that way especially in adolescents without even trying talk therapy or dietary or lifestyle changes.

 

I just feel like I threw away my opportunity to live my life as myself when I agreed to take them, I remember him telling me they would have no effect if I didn't have a 'serotonin deficiency'. I resisted taking them for so long because I was enjoying the catharsis of the sadness and didn't really want to artificially erase it, I feel like I altered the course of my life with that decision and now choosing to come off the effexor has completely disabled me at 34. I thought I still had some good years left ahead of me to enjoy without pain or disability and I put so much effort into staying healthy.

 

I spent ten years studying for degrees I'll never be able to use. I had so many interests I wanted to pursue and honestly I thought I had the rest of my life to do so, just had my own place that I loved, couldn't wait to wake up every morning. My emotional range, sexual function, sleep, appetite, health were perfect. I didn't really realise how lucky I was - I'd put my head on the pillow at night and instantly sleep for a solid 8-10 refreshing hours, could enjoy fresh sheets and a warm bed so much, couldn't wait to make breakfast, found other people fascinating, no pain at all. Had a series of 

 

Now I look land feel like a chronically depressed zombie, can't drive due to visual, movement  and cognitive impairments and I'm dependent on my unwell mother who is 65 to take me to doctors appointments. I anticipated having to care for her, not the other way around. This feels as though I have a progressive brain injury and each day I become even more emotionally flat and anhedonic and physically aged and weak. I've never ever been this way in my life, sad at times (which I actually enjoyed, would love to be able to feel sad and intensely creative again) and some anxiety but when your own parent dismisses your entire change of personality, outlook and obvious cognitive impairments because you can string a sentence together and says nobody will care for you and you need to change your attitude its beyond difficult. Its not a matter of an attitude change, it might be appropriate with depression or anxiety but not a brain injury. Was not expecting this when I stopped taking the effexor. A bit of increased anxiety yes but not this, I just thought it wasn't healthy to be taking it for the rest of my life and I assumed I'd live until I was in my 70s or 80s. At this rate I'll be lucky to see out the next five years.

 

Within the space of 6 months I lost the opportunity ever to have a child or relationship or career as I no longer get periods, can't get hormone therapy now as its contraindicated with stroke, I'm basically asexual, lost my appearance, my physical health, can't see, can't sleep, can't walk, have akathisia and involuntary movements all night, and I've moved in with my mother as I'm unable to care for myself. I don't know how to process this loss and pain so I thought I'd just write it down here although I'm aware its self indulgent and self pitying.

Edited June 14, 2019 by Altostrata
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