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☼ Imac: protracted WD survivor

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cymbaltawithdrawal5600

 

I carry almonds with me everywhere. Even beside my bed. When I get up I need to pop a few before I get up from bed or I get that feeling right away.

 

Wow. I thought I was the only one with an 'almond habit'. They are top of the list for foods rich in magnesium too. I get the mega bag because I eat so many of them, and I get cranky when the grocery is out of them. I ignore my increasing carbon footprint, as they come from CA. You gotta do what you gotta do.

 

Where do yours come from?

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imac

 

 

I carry almonds with me everywhere. Even beside my bed. When I get up I need to pop a few before I get up from bed or I get that feeling right away.

 

 

Wow. I thought I was the only one with an 'almond habit'. They are top of the list for foods rich in magnesium too. I get the mega bag because I eat so many of them, and I get cranky when the grocery is out of them. I ignore my increasing carbon footprint, as they come from CA. You gotta do what you gotta do.

 

Where do yours come from?

I buy my almonds at the local health food store. Raw and plain. Yup, don't leave home without them. LoL

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WiggleIt

Hi imac. Maybe I can find some hope with your words. I am in severe protracted wd due to fast taper off tricyclic and benzo. Was on them for three years for chronic pain.

 

I am having EVERY symptom, including severe myoclonic jerks and seizures.

 

There is hope for me?

 

My chronic pain support groups tell me to get tested for Lyme bc I have so many neuro symptoms, but when I read these threads on SA, my symptoms make SO much sense with protracted wd. Besides, I have REALLY low risk for Lyme bc of low exposure. But now those groups have scared me

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coldturkmama

Hi everyone,

I thought I'd stop over here and say a quick hello to introduce myself to those who don't know me and say hi to those who do.

I am a fellow refugee off the boat from pp! LoL

I had been an active member there since I ct'd 12.5 mg of Zoloft on September 4th, 20111.

I am still in protracted WD and recovery for almost 40 months now after using various ssri's for a period of 13 years. Within that timeframe I had hit poop out twice and i ct'd twice. In the end, I did a fast taper from 75mg to 12.5 mg of Zoloft and then ct'd thinking It was a very reasonable dose to drop off from ( little did I know).

Today, at close to 40 months off, I am finally seeing some good windows. I turned a crucial corner at 36 months off. I still deal with a lot of physical symptoms and a handful of mental ones as well well but I am no longer living in 24/7 mental anguish and torture. I'm still here to get support and extend my wisdom and experience to others as well!!

 

It helps a lot to come here and be able to read this stuff from another cold turkey'er lol (horrible english).

Some times that's all the reassurance we need. :) 

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imac

Hi imac. Maybe I can find some hope with your words. I am in severe protracted wd due to fast taper off tricyclic and benzo. Was on them for three years for chronic pain.

 

I am having EVERY symptom, including severe myoclonic jerks and seizures.

 

There is hope for me?

 

My chronic pain support groups tell me to get tested for Lyme bc I have so many neuro symptoms, but when I read these threads on SA, my symptoms make SO much sense with protracted wd. Besides, I have REALLY low risk for Lyme bc of low exposure. But now those groups have scared me

Hi wigglelt, thanks for you post. I'm sorry about what is happening to you. This is a total travesty!!

In my experience, which has been protracted WD for almost 3.5 years now ( plus another attempted ct and RI and acute WD back in 2009) I've read a lot on these sites, met a lot of people and I can tell you I have seen many people mimic loads of diseases including Lyme. Of all these people I remember only 2 stating they've been diagnosed with Lyme disease. It's crossed my mind several times as well and I do live in a province where there are tics in certain areas. But it seems too coincidental to me that both times acute hit wd within months of a ct. It certainly wouldn't hurt to get tested of you need that peace of mind. I have been through various tests in my journey in order to have peace of mind. I'm not sure what Lyme testing involves. Is it a definitive blood test or one of those things where mainly symptoms can add up to a diagnosis ( because while in WD I wouldn't trust any kind of diagnosis based on that).

As for your myoclonic jerks and seizures, I've heard many people having these. I'm sorry you have to deal with these. I didn't have these two but I can tell you they're both very common with benzo WD ( I belong to a benzo WD forum as my ssri WD has been very similar to those ct'ing Benzos). I hope you are seeing a doctor for the seizures. That sounds like it would need attention as it can be dangerous. If you haven't been to benzo buddies I would highly suggest for you to go and check it out. You've definetalt been given a double whammy. I know for myself, I find so much great support and useful information between all the sites I visit.

I'm here to talk anytime you need!!

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imac

Thanks For the suggestion. These definately could help a few here.

I currently take a cal/mag combo pill which works great. It's a citramate. It actually produces a calming affect for me. I use to tolerate fish oil in the first year of WD then no longer was able to. Have tried it again twice and reacted. Last time was at 35 months off. I've been feeling much better last few months so I just bought a new fish oil and will be attempting it again in small doses. I can say that when I took fish oil the first year of WD I never had brain zaps at all. As soon as I stopped taking them I had hundreds per day and really bad for about 2 years straight. They've subsided on their own now.

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dalsaan

Hi Imac

 

Do you take the cal/mag at night? Does it help you sleep?

 

Dalsaan

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imac

Hi Imac

 

Do you take the cal/mag at night? Does it help you sleep?

 

Dalsaan

Yes I do. I'll take it for a few weeks then stop for a few weeks. It's a pure form though. I use Thorne brand which can only be bought at a health food store or online. Cal/mag citramate. It works AMAZING.

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WiggleIt

I should have clarified about the seizures: my brain does not show seizure activity in the EEG, but my body at times flops uncontrollably, so it looks like I am having one.

 

On another thread, I was told this is a type of non-epileptic seizure.

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WiggleIt

Lyme does have a blood test, so it would not be a guesswork diagnosis.

 

I'm much more worried about the brain MRI I need to get done.

 

Remind me: did you ever have bladder troubles bc of meds? If so, did they clear up?

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dalsaan

 

Hi Imac

Do you take the cal/mag at night? Does it help you sleep?

Dalsaan

Yes I do. I'll take it for a few weeks then stop for a few weeks. It's a pure form though. I use Thorne brand which can only be bought at a health food store or online. Cal/mag citramate. It works AMAZING.

Thanks. I might give that a go and perhaps alternate with my mag/taurine routine which I have to stop and start as well.

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imac

 

 

Hi Imac

Do you take the cal/mag at night? Does it help you sleep?

Dalsaan

Yes I do. I'll take it for a few weeks then stop for a few weeks. It's a pure form though. I use Thorne brand which can only be bought at a health food store or online. Cal/mag citramate. It works AMAZING.
Thanks. I might give that a go and perhaps alternate with my mag/taurine routine which I have to stop and start as welldelte.

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imac

 

 

Hi Imac

Do you take the cal/mag at night? Does it help you sleep?

Dalsaan

Yes I do. I'll take it for a few weeks then stop for a few weeks. It's a pure form though. I use Thorne brand which can only be bought at a health food store or online. Cal/mag citramate. It works AMAZING.
Thanks. I might give that a go and perhaps alternate with my mag/taurine routine which I have to stop and start as well.
As long as it's okay to o switch up magnesium type? I'm not sure about that. I don't have to switch on and off I just choose to. I don't like to take anything for a long period. The one I will take everyday forever once I can tolerate is omega 3.

Good luck Dalsaan! :)

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imac

Lyme does have a blood test, so it would not be a guesswork diagnosis.

 

I'm much more worried about the brain MRI I need to get done.

 

Remind me: did you ever have bladder troubles bc of meds? If so, did they clear up?

I wonder why here in Canada they say it's very hard to diagnose Lyme. I think I've heard Canadians should go to the USA for testing. Maybe they don't have blood tests here for that.

No, I never had any bladder issues. I can't help you with that. Sorry.

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imac

I should have clarified about the seizures: my brain does not show seizure activity in the EEG, but my body at times flops uncontrollably, so it looks like I am having one.

 

On another thread, I was told this is a type of non-epileptic seizure.

I've read about this. I read Bliss Johns' book and she had this for quite some time and it's completely gone now. She described it just like you have. Have you read about her? I can't remember but I think there was a name for it.

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Jbuk2015

Hi iMac. I ct off off lorazapam from 0.5mg and also from mirtazapine 45mg down to zero over 3 weeks. I also started zoloft and went up to 50mg over a month or so then stopped it at 25. This is a pretty much 12 months ago. I am still in pain had walking problems and cognative problems. Will this all heal eventually. I too had took SSRIs for 17 years. I currently have vision issues ringing in my ears and burning stabbing pains and numbness behind my scalp and left side of head. I am really agitated too and think I have akathisia

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imac

Hi iMac. I ct off off lorazapam from 0.5mg and also from mirtazapine 45mg down to zero over 3 weeks. I also started zoloft and went up to 50mg over a month or so then stopped it at 25. This is a pretty much 12 months ago. I am still in pain had walking problems and cognative problems. Will this all heal eventually. I too had took SSRIs for 17 years. I currently have vision issues ringing in my ears and burning stabbing pains and numbness behind my scalp and left side of head. I am really agitated too and think I have akathisia

Hi jb, thanks for posting. I'm sorry you're suffering so much. You have 12 months under your belt and that shows great strength!!

As for the symptoms you've listed, I've had ALL of them and pretty severe and they've all resolved completely or to the point where I can TOTALLY manage them now. I no longer have issues walking. I used to have terrible balance and sometimes feared one of my leg would just stop working as I walked. Everything felt totally neurological. Like my brain wasn't sending the right signals anywhere. My cognitive issues came and went in waves. From really severe to what I have now, mainly a slight fog at times. For instant, my daughter left for work an hour ago and I acknowledged her and said goodbye. Then 20 minutes later I looked at hubby and said " she's at work right? I think I rememeber saying goodbye". Just slight fogginess like I wasn't paying attention when being spoken to. I find it hard to multitask now and that used to be one of my greatest strengths. I was super woman and organized and a perfectionist. I'm still organized but no longer a perfectionist. That might be a good thing. I also cannot type on my iPhone and have a conversation with someone beside me at the same time anymore. I need to give all my focus to one thing. I NEVER used to be like this. It does waver though so it's a sign it will return to normal. I find this all just mild cognitive issues now. It used to be 1000 times worse. I couldn't even talk sometimes, I'd stutter, I couldn't get words out at all. I couldn't do my job ( I was in project management) I had zero memory from 5 minutes ago. The one very strange thing I remember. I play sudoku all the time. Last summer when a wave hit, all of a sudden I couldn't even place 1 single number in a box. This went on for 3 months. I literally couldn't do it at all. I truly felt like a stroke victim. I was scared and it was frustrating. I worked at it every day and I literally couldn't do it. Then one day like a switch I was able to do it again. I know for sure a certain part of my brain just shut off for a while, while it was adjusting. I haven't had that problem since nor have I gone back to the worst part of those symptoms. I rememeber during my first year off meds, I was in the kitchen and going to make a sandwich. I had everything in the counter and then I literally couldn't put the sandwhich together. My brain kept going through the motions of how to put the sandwhich together by hands coukdnt do it. I've never experienced anything like it. I just sat there and cried and didn't make my sandwhich.

My vision in my left eye started going blurry in and out about 2 years into WD. I'm now 40 months off and there's major improvement. Last year it was awful. I've had moments where I've gone completely blind in my eye for about 30 minute intervals. I Had thorough eye exams 3 times last year. Even one that they do Only for special circumstances. My eyes are perfectly healthy ( sure didn't feel that way). Oddly I saw blurry but the optometrist didn't see it. I do wear glasses for reading and just wear my glasses all the time because although my prescription is very very slight, I find it hard to keep adjusting when taking my glasses on and off. My left eye still goes blurry at times but it's notnreally a concern to me anymore. I have heard that vision issues is something that can linger for years and years afterwards. A lot of people develop major floaters ( I had those too but they seem to have resolved for me).

I still have tinnitus ( ringing in my ears) but that too has settled down ALOT. that's another along with the vision, I've heard can be a very long term issue. It truly doesn't bother me tho, not after the horror show of other things I've had. Some days the tinnitus is worse and also feels like static in my ears or like there's wind in my ears. Or even like a sizzling sound. I used to have horrendous head issues. Like my brain was sizzling and on fire a lot. It felt like my brain was actually swollen. I've also had very strange sensations in my brain. Like it was shrinking or moving around ( I know. It sounds crazy but it's the only way I could explain it). I have what I call ice picks stabbing my brain in different areas randomly. I had some of this just this past week but not as bad as it used to be. Most of the head stuff has cleared up too or at least to a level of tolerability ( where I can totally function and ignore it). Yes I got the numbness behind the scalp too AND my whole head before a lot. That seems to have resolved. I had akathisia for a good almost 2 years ( sometimes had a break from it). I handled it differently though. Most people pace constantly with it. One of my worst symptoms that was ongoing up to 3 years off meds was that neuro fear/terror. Because of that feeling I mainly sat frozen in my seat the whole time I had akathisia. My insides where burning so bad and felt like I was going to explode. My body and brain was racing inside nonstop. All I wanted to do was jump around and run around but I had so much terror I was stuck. The akathisia is TOTALLY gone and has been for quite some time for me. I only get the odd night of restless legs now which I can tolerate, it's just annoying. Akathisia is also a common symptom that can sadly take some time to resolve. I know I say I still have a bunch of symptoms but honestly, I can handle what I have and it doesn't get in the way of my life anymore. The only waves I still get that I find hard to deal with are the autonomic stuff. ( I gets waves of bp disregulation, heart palps and dizziness, nausea). I finally have breaks from this too though. I can go weeks without these symptoms. That's a HUGE improvement for me as it used to be constant.

I hope I've answered your questions. I do believe that everything will eventually resolve for us, hang in there jb!

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SelmaLady

Thank you SO MUCH for this post.  SO needed to read this today.  I'm still taking 25mg Zoloft and have a long and weird drug history but my biggest terror is the on and off again akathisia.  So so so good to see that you did recover, even after a long wait.  I am so glad that you have regained your life. 

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imac

I'm so glad you've found comfort in my post SelmaLady. I'm sorry for what you're going through. You WILL get better. I truly didn't think it was possible for me. I thought I'd be living inside my tormented mind and body for the rest of my life and life has proven me wrong, thankfully!! I Still have a long way to go but I have complete faith now. Good luck with your taper. Just be sure to go slow.

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Skylarblue75

Hi imac a few others on here suggested to stop by and read your thread, i can relate to all your symptoms. Im 30 months protracted wd from a ct from 20 mgs of celex during my thrid pregnancy back in November of 2011. Was on it 10 years. W/D really didn't hit me hard until 1 month after my baby was born, august of 2012, did t understand what was going on with me, thought i was losing my mind and was given fistfuls of pills. Im currently 8 months off lexapro which was the last drug i tried and just hit my 2 year anniversary free of benzos today. So here's a question for you, do i now count time for healing from my last ingested drug? You thread has givem me a little hope, but im terrified. I just wish the anxiety would leave me, about have of my symptoms didnt show up until 2 years ago when i was rapid detoxed off benzos. Thank you for taking the time to read this.

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WiggleIt

 

I should have clarified about the seizures: my brain does not show seizure activity in the EEG, but my body at times flops uncontrollably, so it looks like I am having one.

 

On another thread, I was told this is a type of non-epileptic seizure.

I've read about this. I read Bliss Johns' book and she had this for quite some time and it's completely gone now. She described it just like you have. Have you read about her? I can't remember but I think there was a name for it.

 

 

I have not read it, but thank you for the recommendation!  

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WiggleIt

 

Hi iMac. I ct off off lorazapam from 0.5mg and also from mirtazapine 45mg down to zero over 3 weeks. I also started zoloft and went up to 50mg over a month or so then stopped it at 25. This is a pretty much 12 months ago. I am still in pain had walking problems and cognative problems. Will this all heal eventually. I too had took SSRIs for 17 years. I currently have vision issues ringing in my ears and burning stabbing pains and numbness behind my scalp and left side of head. I am really agitated too and think I have akathisia

Hi jb, thanks for posting. I'm sorry you're suffering so much. You have 12 months under your belt and that shows great strength!!

As for the symptoms you've listed, I've had ALL of them and pretty severe and they've all resolved completely or to the point where I can TOTALLY manage them now. I no longer have issues walking. I used to have terrible balance and sometimes feared one of my leg would just stop working as I walked. Everything felt totally neurological. Like my brain wasn't sending the right signals anywhere. My cognitive issues came and went in waves. From really severe to what I have now, mainly a slight fog at times. For instant, my daughter left for work an hour ago and I acknowledged her and said goodbye. Then 20 minutes later I looked at hubby and said " she's at work right? I think I rememeber saying goodbye". Just slight fogginess like I wasn't paying attention when being spoken to. I find it hard to multitask now and that used to be one of my greatest strengths. I was super woman and organized and a perfectionist. I'm still organized but no longer a perfectionist. That might be a good thing. I also cannot type on my iPhone and have a conversation with someone beside me at the same time anymore. I need to give all my focus to one thing. I NEVER used to be like this. It does waver though so it's a sign it will return to normal. I find this all just mild cognitive issues now. It used to be 1000 times worse. I couldn't even talk sometimes, I'd stutter, I couldn't get words out at all. I couldn't do my job ( I was in project management) I had zero memory from 5 minutes ago. The one very strange thing I remember. I play sudoku all the time. Last summer when a wave hit, all of a sudden I couldn't even place 1 single number in a box. This went on for 3 months. I literally couldn't do it at all. I truly felt like a stroke victim. I was scared and it was frustrating. I worked at it every day and I literally couldn't do it. Then one day like a switch I was able to do it again. I know for sure a certain part of my brain just shut off for a while, while it was adjusting. I haven't had that problem since nor have I gone back to the worst part of those symptoms. I rememeber during my first year off meds, I was in the kitchen and going to make a sandwich. I had everything in the counter and then I literally couldn't put the sandwhich together. My brain kept going through the motions of how to put the sandwhich together by hands coukdnt do it. I've never experienced anything like it. I just sat there and cried and didn't make my sandwhich.

My vision in my left eye started going blurry in and out about 2 years into WD. I'm now 40 months off and there's major improvement. Last year it was awful. I've had moments where I've gone completely blind in my eye for about 30 minute intervals. I Had thorough eye exams 3 times last year. Even one that they do Only for special circumstances. My eyes are perfectly healthy ( sure didn't feel that way). Oddly I saw blurry but the optometrist didn't see it. I do wear glasses for reading and just wear my glasses all the time because although my prescription is very very slight, I find it hard to keep adjusting when taking my glasses on and off. My left eye still goes blurry at times but it's notnreally a concern to me anymore. I have heard that vision issues is something that can linger for years and years afterwards. A lot of people develop major floaters ( I had those too but they seem to have resolved for me).

I still have tinnitus ( ringing in my ears) but that too has settled down ALOT. that's another along with the vision, I've heard can be a very long term issue. It truly doesn't bother me tho, not after the horror show of other things I've had. Some days the tinnitus is worse and also feels like static in my ears or like there's wind in my ears. Or even like a sizzling sound. I used to have horrendous head issues. Like my brain was sizzling and on fire a lot. It felt like my brain was actually swollen. I've also had very strange sensations in my brain. Like it was shrinking or moving around ( I know. It sounds crazy but it's the only way I could explain it). I have what I call ice picks stabbing my brain in different areas randomly. I had some of this just this past week but not as bad as it used to be. Most of the head stuff has cleared up too or at least to a level of tolerability ( where I can totally function and ignore it). Yes I got the numbness behind the scalp too AND my whole head before a lot. That seems to have resolved. I had akathisia for a good almost 2 years ( sometimes had a break from it). I handled it differently though. Most people pace constantly with it. One of my worst symptoms that was ongoing up to 3 years off meds was that neuro fear/terror. Because of that feeling I mainly sat frozen in my seat the whole time I had akathisia. My insides where burning so bad and felt like I was going to explode. My body and brain was racing inside nonstop. All I wanted to do was jump around and run around but I had so much terror I was stuck. The akathisia is TOTALLY gone and has been for quite some time for me. I only get the odd night of restless legs now which I can tolerate, it's just annoying. Akathisia is also a common symptom that can sadly take some time to resolve. I know I say I still have a bunch of symptoms but honestly, I can handle what I have and it doesn't get in the way of my life anymore. The only waves I still get that I find hard to deal with are the autonomic stuff. ( I gets waves of bp disregulation, heart palps and dizziness, nausea). I finally have breaks from this too though. I can go weeks without these symptoms. That's a HUGE improvement for me as it used to be constant.

I hope I've answered your questions. I do believe that everything will eventually resolve for us, hang in there jb!

 

 

Wow, imac, thank you for taking the time to write all of this and to answer all the questions from all of us in the thick of it.  I feel like I am the only one on here (one of the few anyway) who can't walk or control my body, but knowing there is a light of hope that this could resolve is a big deal and so hopeful.

 

May I ask, why did you not reinstate to stabilize and then re-taper more slowly?  Because my symptoms are so severe, some people have given me that advice, but I am getting past the safety window to reinstate.  Plus, I don't know which med to reinstate.  My stupid doc made me rapid taper off nortriptyline, then switch immediately to desipramine, then rapid taper off desipramine.  Therefore, it's been impossible to know whether I have been withdrawing from nortriptyline this whole time, or reacting adversely to desipramine, or withdrawing from desipramine.

 

I don't want to enter the nervous system ping-pong of going on and off meds, so I just don't know what to do.  I realize you can't TELL me what to do, but I am wondering why you did not RI.  Maybe it will shed some light for me.

 

From the bottom of my heart, thank you for being wiling to still help out those of us still suffering.  Your time and compassion are a gift.

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Brandy

I should have clarified about the seizures: my brain does not show seizure activity in the EEG, but my body at times flops uncontrollably, so it looks like I am having one.

 

On another thread, I was told this is a type of non-epileptic seizure.

 

I need to catch up on recent posts on imac's thread and also yours, WiggleIt. Can't keep up on all the reading, fascinating as everything is.

 

But this caught my eye. For those unfamiliar with my history, I was put on meds a very long ago for seizure disorder (epilepsy). I never lost consciousness but had spells of severe myoclonic jerking, a rare but known (even then) form of epilepsy. My EEGs were consistently abnormal for quite a while. I won't go into detail about the complex med history involved in controlling my seizures, but over time it led to my being put on benzos (as adjunct anticonvulsant after one that had worked for me started failing on me after many years), and later on paxil to "rebalance my neurotransmitters" after I went off a large dose of benzo almost cold-turkey, then taken down in dose much too quickly after being switched to an equivalent dose of another benzo (the clonazepam I still take at a much lower dose than initially). My previously consistently abnormal EEGs did remain normal on the clonazepam.

 

After 13 years on paxil, which I found slightly energizing (a good thing in my case) initially, I found by chance that my hypersomnia that had been worsening drastically (sleeping up to 18 hours a day at my worst!) was worsened by the paxil now, and went off too quickly. (I had been assured by doctors that unlike benzos, it could not possibly be addictive.)

 

I had horrible withdrawal including akathisia and many other symptoms, including very severe jerking that manifested very much like my original seizures. This occurred night and day, and I was amazed that I had such severe jerking even during sleep that at my worst, I was not only jerking awake (frequent - could hardly get any sleep), sometimes jerking upright into a full sitting position on the bed, but one time I actually flipped off the side of the bed onto the floor from a violent jerking.

 

My neurologists did an EEG and (probably due to my severe akathisia) it was hard just to sit still during the test. I also had severe jerking that I really thought was seizure activity many times during the procedure. It got worse during the strobe light stimulus.

 

I was amazed that the EEG results were normal. The tech who did the test was employed by the doctors - she's excellent. I remembered her from previous EEGs and other tests.

 

The neurologists acknowledge that I had withdrawal from the paxil. They had no explanation for why it caused the severe jerking.

 

This and so many other severe symptoms lasted for some time (longer than most people, probably due to my complex neurological and med history, I suspect). But my akathisia and jerking are long gone now.

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imac

 

 

 

Hi iMac. I ct off off lorazapam from 0.5mg and also from mirtazapine 45mg down to zero over 3 weeks. I also started zoloft and went up to 50mg over a month or so then stopped it at 25. This is a pretty much 12 months ago. I am still in pain had walking problems and cognative problems. Will this all heal eventually. I too had took SSRIs for 17 years. I currently have vision issues ringing in my ears and burning stabbing pains and numbness behind my scalp and left side of head. I am really agitated too and think I have akathisia

Hi jb, thanks for posting. I'm sorry you're suffering so much. You have 12 months under your belt and that shows great strength!!

As for the symptoms you've listed, I've had ALL of them and pretty severe and they've all resolved completely or to the point where I can TOTALLY manage them now. I no longer have issues walking. I used to have terrible balance and sometimes feared one of my leg would just stop working as I walked. Everything felt totally neurological. Like my brain wasn't sending the right signals anywhere. My cognitive issues came and went in waves. From really severe to what I have now, mainly a slight fog at times. For instant, my daughter left for work an hour ago and I acknowledged her and said goodbye. Then 20 minutes later I looked at hubby and said " she's at work right? I think I rememeber saying goodbye". Just slight fogginess like I wasn't paying attention when being spoken to. I find it hard to multitask now and that used to be one of my greatest strengths. I was super woman and organized and a perfectionist. I'm still organized but no longer a perfectionist. That might be a good thing. I also cannot type on my iPhone and have a conversation with someone beside me at the same time anymore. I need to give all my focus to one thing. I NEVER used to be like this. It does waver though so it's a sign it will return to normal. I find this all just mild cognitive issues now. It used to be 1000 times worse. I couldn't even talk sometimes, I'd stutter, I couldn't get words out at all. I couldn't do my job ( I was in project management) I had zero memory from 5 minutes ago. The one very strange thing I remember. I play sudoku all the time. Last summer when a wave hit, all of a sudden I couldn't even place 1 single number in a box. This went on for 3 months. I literally couldn't do it at all. I truly felt like a stroke victim. I was scared and it was frustrating. I worked at it every day and I literally couldn't do it. Then one day like a switch I was able to do it again. I know for sure a certain part of my brain just shut off for a while, while it was adjusting. I haven't had that problem since nor have I gone back to the worst part of those symptoms. I rememeber during my first year off meds, I was in the kitchen and going to make a sandwich. I had everything in the counter and then I literally couldn't put the sandwhich together. My brain kept going through the motions of how to put the sandwhich together by hands coukdnt do it. I've never experienced anything like it. I just sat there and cried and didn't make my sandwhich.

My vision in my left eye started going blurry in and out about 2 years into WD. I'm now 40 months off and there's major improvement. Last year it was awful. I've had moments where I've gone completely blind in my eye for about 30 minute intervals. I Had thorough eye exams 3 times last year. Even one that they do Only for special circumstances. My eyes are perfectly healthy ( sure didn't feel that way). Oddly I saw blurry but the optometrist didn't see it. I do wear glasses for reading and just wear my glasses all the time because although my prescription is very very slight, I find it hard to keep adjusting when taking my glasses on and off. My left eye still goes blurry at times but it's notnreally a concern to me anymore. I have heard that vision issues is something that can linger for years and years afterwards. A lot of people develop major floaters ( I had those too but they seem to have resolved for me).

I still have tinnitus ( ringing in my ears) but that too has settled down ALOT. that's another along with the vision, I've heard can be a very long term issue. It truly doesn't bother me tho, not after the horror show of other things I've had. Some days the tinnitus is worse and also feels like static in my ears or like there's wind in my ears. Or even like a sizzling sound. I used to have horrendous head issues. Like my brain was sizzling and on fire a lot. It felt like my brain was actually swollen. I've also had very strange sensations in my brain. Like it was shrinking or moving around ( I know. It sounds crazy but it's the only way I could explain it). I have what I call ice picks stabbing my brain in different areas randomly. I had some of this just this past week but not as bad as it used to be. Most of the head stuff has cleared up too or at least to a level of tolerability ( where I can totally function and ignore it). Yes I got the numbness behind the scalp too AND my whole head before a lot. That seems to have resolved. I had akathisia for a good almost 2 years ( sometimes had a break from it). I handled it differently though. Most people pace constantly with it. One of my worst symptoms that was ongoing up to 3 years off meds was that neuro fear/terror. Because of that feeling I mainly sat frozen in my seat the whole time I had akathisia. My insides where burning so bad and felt like I was going to explode. My body and brain was racing inside nonstop. All I wanted to do was jump around and run around but I had so much terror I was stuck. The akathisia is TOTALLY gone and has been for quite some time for me. I only get the odd night of restless legs now which I can tolerate, it's just annoying. Akathisia is also a common symptom that can sadly take some time to resolve. I know I say I still have a bunch of symptoms but honestly, I can handle what I have and it doesn't get in the way of my life anymore. The only waves I still get that I find hard to deal with are the autonomic stuff. ( I gets waves of bp disregulation, heart palps and dizziness, nausea). I finally have breaks from this too though. I can go weeks without these symptoms. That's a HUGE improvement for me as it used to be constant.

I hope I've answered your questions. I do believe that everything will eventually resolve for us, hang in there jb!

Wow, imac, thank you for taking the time to write all of this and to answer all the questions from all of us in the thick of it. I feel like I am the only one on here (one of the few anyway) who can't walk or control my body, but knowing there is a light of hope that this could resolve is a big deal and so hopeful.

 

May I ask, why did you not reinstate to stabilize and then re-taper more slowly? Because my symptoms are so severe, some people have given me that advice, but I am getting past the safety window to reinstate. Plus, I don't know which med to reinstate. My stupid doc made me rapid taper off nortriptyline, then switch immediately to desipramine, then rapid taper off desipramine. Therefore, it's been impossible to know whether I have been withdrawing from nortriptyline this whole time, or reacting adversely to desipramine, or withdrawing from desipramine.

 

I don't want to enter the nervous system ping-pong of going on and off meds, so I just don't know what to do. I realize you can't TELL me what to do, but I am wondering why you did not RI. Maybe it will shed some light for me.

 

From the bottom of my heart, thank you for being wiling to still help out those of us still suffering. Your time and compassion are a gift.

Hi WiggleIt,

It's my pleasure to help anyone I can. I truly would never turn anyone away going through this same horror show, not after what I've been through. It's sinnister and horrific and beyond unjust what has happened to us. It's by far the scariest thing I know I will ever go through and there truly are no proper words to describe it. It breaks my heart to hear everyone talk about being in the midst of this because it's still so close for me, I remember how it felt, how terrified I was 24/7. And tbh, I have no idea if I'll be thrown back into the torture chamber tomorrow. I realize this isn't a linear healing ( it certainly hasn't been for me) and I may be slammed with the old symtoms again at any time. I did have a lot of original symptoms hit me again close to 3 years off in an acute fashion that lasted months. It floored me and it nearly killed me.

To answer your VERY good question of why I chose not to RI..... That's a tough one but I'll try and answer. To Ri has always been in the back of my mind. I think the closest I came to RI was at 34 months off. That's how desperate I got. I seriously can't believe I even made it that long without dying from WD. I remember thinking every single day in WD that I can't possibly take it another day but my own strength has amazed me because everyday I went to bed getting through yet another day of torture. By 34 months when that acute wave hit me I didn't think I could do it anymore but I continued to get through each day. By this point I was afraid of what meds might do to me. What if I had an adverse reaction? What would happen? In the beginning of WD I didn't find PP until I was in the thick of it. I was 5-6 months off already. I was so dellusional and hysterical every moment that a RI was absolutely not an option for me, I was way too scared and paranoid that one pill would kill me instantly. I haven't even taken an advil for a headache. Too scared to take anything at all, after knowing how much these meds have messed up my brain chemistry there was no way I could trust ANY pill would make me better. I mentioned before that fear and terror lived with me for an entire 3 years. It's been so hard to live with that 24/7 but I have to say Now that it's been gone for a few months, im grateful I had it because In a way that primal fear and terror saved my life in WD. It kept me from RI'ing and it kept me from commiting suicide.

My case was a bit complicated like yours too. I ct'd PAXIL ( using prozac for a couple of months) in 2009. I was completely fine for 4 months and thought the prozac helped me get off PAXIL ( I've tried to taper PAXIL at least 10 times over a 7 year period without success). One day ( 2 days before Christmas) 4 months later it's like full on acute WD hit me instantly while I was at a grocery store buying last minute candy for stockings. Every known symtom came flooding at me at once. Without getting into details, I ended up in the psych ward that night thinking I was dying or may kill myself. After a slap on the wrist for coming off meds when clearly I'm a "lifer" ( as the pdoc stated) and RI'ing PAXIL I was also put on benzos 3 times a day for a month to help keep me calm. ( they also tried to put me on seroquil but I refused it. I was too scared to take it) My RI back then took 3 months for me to stablize. I slowly tapered myself off Ativan after a month with no complications. I was fine for 6 months and then all of a sudden I pooped out on the PAXIL. I started to have intense brain zaps and I knew it was the PAXIL not working because I always got brain zaps ( 3 days later like clockwork) when I missed a dose. I started to get bad anxiety and obsessive ruminations and fear for no reason etc. My doc ct'd me off PAXIL and put me on Zoloft. I never stablized on the Zoloft and we played wih my doses ( kept raising it) for about a year until I had enough and decided to taper off once and for all and never touch another psych med again. My doc wanted me off 75mg of Zoloft in 2 weeks. I thought I was brilliant by tapering from 75mg to 12.5 mg in a month instead. I held the 12.5 mg for 4 months til I felt great and then skipped doses for s few weeks til I just stopped. So all in all, I too had no idea what WD was. PAXIL ct or Zoloft adverse reaction. My gut tells me it was PAXIL ct WD and had I RI then I would have gone back to Paxil not Zoloft. Because PAXIL is the one I ct'd from and was on the longest.

I didn't start meds on PAXIL. I started on celexa and I had a nervous breakdown ( I now know it was poop out) in 2003. They straight switched me to PAXIL then and again it took 3 months to stablize. As you can see I've had a lot of WD and acute over the years. The last 5 years have been the worst for me and has ruined my life ( I have no friends left and no job) but I'm definately glad I didn't RI because where would I be now? Starting this nightmare over? Or in the home stretch. We just never know how close the end of WD is. I held on through the grace of God and this one picture I saw one time. Everytime I wanted to give up I remembered this picture and held onto hope.

post-3900-0-43142500-1421718480.jpg

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chia1214

Ah, this feels like old home week! When I read your post and all the responses, my resolve to press on was ultra-confirmed. I feel sure I can claim the honor of being in extended protracted withdrawal. Thanks for sharing your story. I'm a month in on this forum and am learning new names & terms for all that I have lived with. I thought of you today when I was making my husband's sandwich. About when you described that you couldn't finish making yours. I did finish his!

 

I don't need anything, just wanted to drop in and say thanks for your encouragement. I know I have a potentially long and tumultuous trip in front of me, but it has been very, very good for me to get the hope that's encapsulated within these threads. I've been poly-drugged all my adult life, since I was 13. I'm 52 this year, so basically 40 years. Time for me to enter my second adolescence!

 

 

 

 

I like your Never Give Up picture. I'm never going to. Especially now that I know what's going on.

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WiggleIt

Wow... Great picture!

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imac

Ah, this feels like old home week! When I read your post and all the responses, my resolve to press on was ultra-confirmed. I feel sure I can claim the honor of being in extended protracted withdrawal. Thanks for sharing your story. I'm a month in on this forum and am learning new names & terms for all that I have lived with. I thought of you today when I was making my husband's sandwich. About when you described that you couldn't finish making yours. I did finish his!

 

I don't need anything, just wanted to drop in and say thanks for your encouragement. I know I have a potentially long and tumultuous trip in front of me, but it has been very, very good for me to get the hope that's encapsulated within these threads. I've been poly-drugged all my adult life, since I was 13. I'm 52 this year, so basically 40 years. Time for me to enter my second adolescence!

 

 

 

 

I like your Never Give Up picture. I'm never going to. Especially now that I know what's going on.

Wow Chia!! You were on meds a very, very long time. I have utmost respect for you for taking charge of your life and making it YOURS and not big Pharma's. Good for you. And remember, it's never too late to be what you might have been!!

You are in my prayers!! And we're always here for support!! Thank you for your kind words.

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chia1214

That was good.

 

How did you copy that link into your post? I read in the Q & A section about links but am not clear on it. I tried right clicking on the post # and choosing the "copy link address" option and pasted it into a blank post just to try it out. But it pasted the entire long link, not a condensed version like your post shows. Does the link automatically condense after you click "post"?

 

I also notice some people have links to their intro threads, also abbreviated. Same process? 

 

Pardon the diverging into tech talk. 

 

Thanks for the link. I'll have to check out some of these facebook recommendations. -- Chia

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nz11

That is a wonderful picture imac it is so true.......It reminds me of a story about my  great grandfather who wanted to create a new drink his wife asked him what he would call it and he said 'one up' but it was a flop , so he created another drink called '2 up' that also was not a financial success ...he tried again with '3-up' and then 4-up but they didnt make the grade then he  sold the house to create 5-up and unfortunately '6-up' was a disaster...so he gave up and became a fisherman.....if only he new how close he came! lol

Never give up!

 

Thanks imac for taking the time to post such wonderful updates that are such encouragements to myself and many others.

When i read what you write i am always left saying to myself holy cow that is exactly how it was for me. eg It felt like my brain was actually swollen.

 

I am off to buy a bag of those almonds.....i kind of like cashews but apparently they dont have so much magnesium.

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imac

That was good.

 

How did you copy that link into your post? I read in the Q & A section about links but am not clear on it. I tried right clicking on the post # and choosing the "copy link address" option and pasted it into a blank post just to try it out. But it pasted the entire long link, not a condensed version like your post shows. Does the link automatically condense after you click "post"?

 

I also notice some people have links to their intro threads, also abbreviated. Same process? 

 

Pardon the diverging into tech talk. 

 

Thanks for the link. I'll have to check out some of these facebook recommendations. -- Chia

Hi Chia ( love that name. I eat chia seeds lol). I went to the page within SA and just highlighted at the top, copied the url and pasted it to this page. The URL must have been shortened already. If you paste a URL and it's long you can just highlight the link, right click and edit URL. Then you can change the name to shorten it.

I hope this helps.

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imac

That is a wonderful picture imac it is so true.......It reminds me of a story about my  great grandfather who wanted to create a new drink his wife asked him what he would call it and he said 'one up' but it was a flop , so he created another drink called '2 up' that also was not a financial success ...he tried again with '3-up' and then 4-up but they didnt make the grade then he  sold the house to create 5-up and unfortunately '6-up' was a disaster...so he gave up and became a fisherman.....if only he new how close he came! lol

Never give up!

 

Thanks imac for taking the time to post such wonderful updates that are such encouragements to myself and many others.

When i read what you write i am always left saying to myself holy cow that is exactly how it was for me. eg It felt like my brain was actually swollen.

 

I am off to buy a bag of those almonds.....i kind of like cashews but apparently they dont have so much magnesium.

Mark. Ahhhh! That story about your grandfather! I'm glad you learned from that. So don't give up with your fight over this injustice that's been brought on all of us! You have passion and motivation. Keep it up!!

I'm glad you like my updates. And as always, you're one of my personal heros here ( but you already know that ;) )

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chia1214

 

That was good.

 

How did you copy that link into your post? I read in the Q & A section about links but am not clear on it. I tried right clicking on the post # and choosing the "copy link address" option and pasted it into a blank post just to try it out. But it pasted the entire long link, not a condensed version like your post shows. Does the link automatically condense after you click "post"?

 

I also notice some people have links to their intro threads, also abbreviated. Same process? 

 

Pardon the diverging into tech talk. 

 

Thanks for the link. I'll have to check out some of these facebook recommendations. -- Chia

Hi Chia ( love that name. I eat chia seeds lol). I went to the page within SA and just highlighted at the top, copied the url and pasted it to this page. The URL must have been shortened already. If you paste a URL and it's long you can just highlight the link, right click and edit URL. Then you can change the name to shorten it.

I hope this helps.

 

 

Yes imac, that helps a lot. Thx!  And I'm big on almonds too. Except in my obsessiveness to eat well to balance the brain drain, I read about raw nuts & grains and phytic acid, so I soak mine, then dehydrate them, THEN eat them. Sheesh. I can't do anything simply. -- Chia

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imac

Chia, what's the correlation with raw nuts and phytic acid? I eat only raw organic almonds. Should I be doing this too? I have an obsession to eat well too and am always looking for better ways!

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chia1214

Oh dear, imac. I don't want to feed anyone else's obsessions! I've researched the phytic acid subject for some years now and have incorporated some findings into my food/prep & diet. This is just me. There is a ton of information about this out there on the web. I personally have experienced great benefits to my digestion from soaking & dehydrating grains,nuts & some seeds. It was one change I mastered when I had a few windows. Anyway, I can include some links that give the long version and shorter version of the concept.

 

Long version:  http://www.westonaprice.org/health-topics/living-with-phytic-acid/

 

Short version: http://wholelifestylenutrition.com/recipes/appetizers-snacks/is-soaking-nuts-necessary-how-to-properly-soak-your-organic-raw-nuts/

 

But plug in your own searches and you will find plenty others. 

 

I have to be careful with my own research into healthier eating choices and my attempts to implement them. In my condition (which parallels yours a lot) I can drive myself nuts (ha ha) trying to eat or do anything better. Before I found this site, I lived in if-only land a LOT. If only I followed this diet or that diet just right, if only I soaked, or sprouted or fermented just right. If only I did GAPS or Paleo or Vegan. If only I found the right naturopath or nutritionist who could help me figure out what I'm missing. It was all my attempts to grasp at a lifeline out of all these horrible symptoms I was living with. Whew, what a relief to finally relax and know that this stuff isn't going to auto-correct with all my frantic scramblings to implement any one protocol.

 

Now I'm going to try to be a bit less obsessed about it all. Yes, I plan to do my best with diet & lifestyle, but I feel like it's all falling into a better perspective for me. I cannot tell you how much this site has helped with that. I'm out of town this weekend and want to reply to some of your previous posts here when I get back and can carve out some time for that. What you have shared has been of great value to me. But I did want to get back to you about the nut question before too many more days passed.

 

Hope you're having a good weekend.  -- Chia

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