Blhj: post acute withdrawal syndrome?

[Blhj]

Hi, I'm new here  I'm a 32-year-old woman from Denmark. I found you because I want to safely taper off of my low-dose Amitriptyline 10 mg. But as I read about withdrawal, I came across "post-acute withdrawal syndrome" or "protracted withdrawal" and I got chills because suddenly what has been happening since 2017 made sense!

Long story short(er), I was on Venlafaxine/Effexor for 8 years because of generalized anxiety and body pains. In 2017 I tapered off from 2 capsules/150 mg, reducing with 1/4 pill every 2 weeks, so I was off them after a little under 4 months. (I didn't know about safely tapering off, only now have I come across your guide :)). By going off so "slowly" - well, compared to my doctor who told me I could do it cold turkey(!) - I didn't get the extreme side effects i would normally get when I would go up or down in dose. I felt the same when I stopped my dose and for the next 2 months, I was completely fine.

But 2 months after I had taken my last dose, I started getting pain in my body, and after 2 more months, at the end of January 2018, from one day to the next I started having an extreme inner shaking/hightened fight-flight-response. It was like I had gotten a shock and I just stayed in that state every second of every day. Never being able to rest was so bad that I wanted to kill myself. It's so difficult to explain the sensation to anyone, so I usually use sleep deprivation as a related example: Sleep deprivation should be the worst form of torture and I get it now - stressing your body every second of every day is completely unbearable and you just want to die. I did sleep, though, but only 4-5 hours every night and I was never tired. My cortisol levels were high so I was checked for Cushing's (cortisol producing tumor) which meant I couldn't take any medicine to help me for 7 months because I needed accurate cortisol results (I didn't have any tumor, though). And also, nothing helped me, not benzodiazepines, sleeping pills, CBD oil or high doses of beta-blockers.

After 7 months, my friend who had experienced the same "shaking" after a whiplash and after only a week had wanted to jump out the window from her apartment on the 3rd floor, recommended a low dose of Amitriptyline and that reduced the shaking by 30 % and after a month by 50 % (I only took 5 mg to begin with, though, and it worked after just a few hours, very weird). My symptoms then started to become predominantly psychological instead, like I would cry all the time. It opened up a deep developmental trauma wound that I started therapy for in December 2018. After that and body therapy like The Rosen Method, my symptoms are gradually decreasing. (I also have like 20 other symptoms, like body pain, fatigue etc.). Now, almost 2 years after I came off venlafaxin, I'm 50 % better than I was in December 2018, but my sympathetic nervous system is still firing too much.

I thought that being on antidepressants for so many years, from I was 22 until I was 30 had made me so numb that I couldn't process all the stuff I had been through earlier in my life - and I still think that's partly the case - but now I see that there's an entire half of the picture I didn't know about!! That this must have been post-acute withdrawal syndrome!! So not only did I have all the past trauma that came up now that I didn't have something to artificially shut it down, at the same time my brain was also struggling with getting chemically back in balance! Woooow... #MindBlown! I don't even know what I feel... I feel so angry and want to sue someone, but that's not really possible I guess. I have missed work for almost 2 years, I'm only now starting a 10-hour internship.

I can't believe you can go from feeling fine to 4 months AFTER you stopped the medicine get these extreme reactions. Has anyone else experienced something like that?

And I still want to come off of the Amitriptyline, but slowly. It's only 10 mg, and this week I'm taking 9 mg. After I've done this for 2 days, I do feel some side effects like a bit of insomnia and hightened fight-flight, but it's minor. And might be because I made an oral solution from my tablets and now I read you should try to stay on your dose for 4 days before you reduce it. I did calculations based on the advice of the 10 % reductions of the new dose every month, and if I jump off at 0,1 mg, it will take me 43 months. It seems like a long time, but I would rather do this safely this time! 

Wow, I'm still in shock that it was protracted withdrawal symptoms that almost had me commit suicide, because no doctor could tell me what I was experiencing. I'm so glad I found you!

And I also want to ask you if anyone has ever gotten completely over this syndrome, can your brain adjust completely? TIA

[Gridley]

Welcome to SA, Blhj.  We're glad you found your way here and we're happy to help you with your taper of Amitriptyline.  As you've learned, the unfortunate truth is that the vast majority of doctors know nothing about withdrawal or tapering.

 

The symptoms you describe are typical withdrawal symptoms.  It is very common when you go off these drugs to experience a "honeymoon period" of feeling fine and then, WHAM, you get hit with withdrawal a few months later.  It's great that you're improving.

 

Delayed onset of withdrawal symptoms

 

What is withdrawal syndrome.

 

Glenmullen’s withdrawal symptom list.

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

Yes, 43 months sounds like a long time, but that's the reality of what's required.  The following paragraph explains it well.

 

   On 8/30/2011 at 2:28 PM,  Rhiannon said: 

When we stop taking the drug, we have a brain that has designed itself so that it works in the presence of the drug; now it can't work properly without the drug because it's designed itself so that the drug is part of its chemistry and structure. It's like a plant that has grown on a trellis; you can't just yank out the trellis and expect the plant to be okay. When the drug is removed, the remodeling process has to take place in reverse. SO--it's not a matter of just getting the drug out of your system and moving on. If it were that simple, none of us would be here. It's a matter of, as I describe it, having to grow a new brain. I believe this growing-a-new-brain happens throughout the taper process if the taper is slow enough. (If it's too fast, then there's not a lot of time for actually rebalancing things, and basically the brain is just pedaling fast trying to keep us alive.) It also continues to happen, probably for longer than the symptoms actually last, throughout the time of recovery after we are completely off the drug, which is why recovery takes so long.

As you've read, we recommend tapering no more than 10% of current dose every four weeks.  

Why taper by 10% of my dosage?

 

Your next taper of Amitriptyline, four weeks after you went down to 9mg would be 8.1mg (10% of 9 = 0.9. 9 -0.9= 8.1), etc.  When you get down to the lower doses, it may be necessary to slow down a bit.  I'm currently tapering from 20mg of Lexapro, and I noticed more symptoms once I got to the mid-3mg dosage and have had to slow down a bit.

Yes, there are many on this site who have recovered fully. The brain has a remarkable ability to heal itself, known as neuroplasticity.

 

Healing from antidepressants: The power of neuroplasticity video (7.5 minutes)

 

To read some of the stories of those who have recovered, please Google "SurvivingAntidepressants success stories"

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Please research all supplements first and only add in one at a time and at a low dose in case you do experience problems.

 

This is your introduction topic -- the place for you to ask questions, record symptoms, share your progress, and connect with other members of the SA community.  I hope you’ll find the information in the SA forums helpful for your situation.  I'm sorry that you are in the position that you need the information, but, as I said before, we're glad that you found us.

 

 

 

 

 

 

 

[Blhj]

Thank you so much for all the info! I'm still in absolute shock that this is what was happening to me! I must have seen 20 doctors in 2018, had hundreds of blood and urine tests and several full body scans. And I'm also angry - I could just as well have killed myself, I was so close for 7 months! But I bet my doctor won't even believe me when I tell her about PAWS, sigh. 

 

I started tapering 150 mg of Venlafaxine/Effexor in May 2017, had my last dose in September 2017. My extreme fight/flight reactions that peaked from January 18-August 18 have finally settled down maybe 80 % from when it was worst. I still become stressed more easily, sometimes have sleep problems and I get some weird, but mild symptoms from time to time, but compared to a year ago it's much better. I've started tapering off of Amitriptyline, and I'm following the 10 % taper (of each new dose) you recommend here, but I'm wondering if I should wait until the PAWS from the Venlafaxine withdrawal has totally stopped? The thing is, I don't know if it will ever completely stop - I mean I took it for 8 years, and I have read stories that if you have taken it for so long you might not be able to recover fully. So maybe I shouldn't wait if the last 25 % never gets better. It just felt like it was the right time for my body to start to go off the Amitriptyline, but I don't want to make matters worse. 

 

I'm very encouraged by the brain's healing ability, though  I have also read that the younger you are, the faster neuroplasticity works, so I hope that being "only" 32 is a good thing. 

 

I'm almost in tears because I found you guys and now my experience is finally validated! Thank you! ❤️❤️❤️ 

 

 

[Sassenach]

Hi BLHJ

 

First could you please complete your drug signature using the following link.

https://www.survivingantidepressants.org/topic/18343-please-put-your-withdrawal-history-in-your-signature/

I appreciate that you have given a full expanation of your history above but in the format the senior mods can see your history at a glance.

If they need fuller info they will ask or refer back. It will also appear below all your posts.

We are not supposed to make you cry, so no tears please

 

2 hours ago, Blhj said:

I mean I took it for 8 years, and I have read stories that if you have taken it for so long you might not be able to recover fully. So maybe I shouldn't wait if the last 25 % never gets better. It just felt like it was the right time for my body to start to go off the Amitriptyline, but I don't want to make matters worse. 

It will take one of the senior mods to answer your question. The general rule is you should be stable before starting a taper.

I took Escitalopram for twelve years but thanks to this site I know I will get better and already am.

As for "only 32", I am 67 and face a long taper but I know it will be worth it.

Gridley gave you some great links above.

There is also this one.https://www.survivingantidepressants.org/forum/28-success-stories-recovery-from-withdrawal/

Welcome to the community, you are among friends.

 

Sassenach

[Gridley]

2 hours ago, Blhj said:

I'm wondering if I should wait until the PAWS from the Venlafaxine withdrawal has totally stopped?

 

There's no way to predict how long complete recovery will take, so you could be waiting quite a while.  The fact that things have settled down 80% and that your symptoms are mild is very encouraging.  I would also trust your feeling that this was the right time for your body to start going off the Amitriptyline.  From what you've written, it seems to me you could carefully begin your Amitriptyline taper, monitoring how you feel as you go.  

 

A variation of the 10% taper that you might want to consider going forward is the Brassmonkey slide taper, which I'm currently using for my Lexapro taper.  Instead of one 10% drop, you spread out the reduction with four 2 1/2% drops, followed by a two-week hold.  That way the 10% doesn't hit you all at once and you sort of "slide" into the reduction.  As a result it's a bit gentler and also gives you stopping points along the way if you decide you need to hold.  

The Brassmonkey Slide Method of Micro-tapering

 

 

[Blhj]

On 7/18/2019 at 5:37 PM, Sassenach said:

Welcome to the community, you are among friends.

 

Thank you so much, Sassenach! That means a lot ❤️ And thank you for explaining how the drug signature works, I will get to it now  

 

On 7/18/2019 at 5:57 PM, Gridley said:

There's no way to predict how long complete recovery will take, so you could be waiting quite a while.  The fact that things have settled down 80% and that your symptoms are mild is very encouraging.  I would also trust your feeling that this was the right time for your body to start going off the Amitriptyline.  From what you've written, it seems to me you could carefully begin your Amitriptyline taper, monitoring how you feel as you go.  

 

Yes, I suspect so too. My nervous system is still being set off by the slightest things sometimes, other times I feel like I can handle more. I still have many symptoms, but the worst one is the overactivated nervous system that prevents me from working because I get over-stimulated by everything - I'm only now starting a 10-hour internship. I also have many physical symptoms. And my emotional pain and sadness have been so extreme that I'm in therapy for childhood issues - now I know part of why my emotions are so unbearable and over-the-top. I still consider myself much better than earlier, but maybe not 80 % : today I'm having a bad day and on those days I would only say I'm 50 % better. So it probably varies between 50 and 80 %. Or maybe I'm just feeling the Amitriptyline withdrawal symptoms today. Thank you for the tip, I will look into that  

 

I use a water solution, but when I have shaken in and draw the 9 ml, I see a layer of white on top of the water, is that just filler from the pills or is medicine too? 

[Blhj]

OMG, today I experienced the first whole day since Jan 2018 that I didn't have the inner extreme shaking/stress feeling! I never thought this would be possible! I didn't even remember what it felt like so I'm actually a bit freaked out xD I don't know what to say, it's sooo weird, but of course incredible! I'm also super scared that it won't last, but now I know that it's actually possible! I thought I would never ever experience any sense of calmness in my body again! Weeeeee!

 

Also, I have had very few extreme emotions in the last week or so, and I actually thought I was getting depressed until I realized that this must be what you normally feel! I didn't remember! My new normal was feeling violent feelings all the time, especially sorrow and sadness, but it's getting better too!

[ChessieCat]

That's good to hear.

[Sassenach]

Great news B

 

What a way to bounce back.

It is also great timing for me personally.

Long may it continue.

Sass

[Blhj]

Thank you both!

Now I have been a little stupid, tapering off too fast: I had just lowered by 10 % and then I forgot to take my dose 2 days in 2 weeks and I decided to just stay on that lower dose (I calculated what the dose was for a week with one day missing and then divided it by 7) instead of going back up, which means I've basically tapered off maybe 20 % instead of 10. I've been having trouble thinking and I've been pretty exhausted and sleepy for the last week or so, but I'm not having any really nasty withdrawal symptoms. Should I just stay on the lower dose and then just wait longer until I go down again?  

[ChessieCat]

If you are handling the symptoms just hold for longer.  If not updose by a tiny amount.  But still hold for longer.

[Blhj]

Hi, I'm tapering off amitriptyline (also called Elavil) 10 mg. I'm at 6,5 mg and have been using my own water solution from tablets. If I don't taper too fast but stick to 10 % I don't feel any side effects - and I'm extremely sensitive to those like most people on here probably are - so I think I'm doing it right, BUT I'm wondering if you have any tips about the solution?

 

I usually make enough for one week and I shake the jar pretty violently before use and draw just after I've shaken it, from the middle of the jar. But it takes a little bit of time to dose it correctly in the syringe, not a lot though. Is that how you should do it? 

 

I have noticed a white layer on top of the water even after I've shaken it, is that okay? Is it the binder or the amitriptyline?

 

Some of it gets stuck to the outside of the syringe, should I just clean it off? 

 

After a few days, the jar starts to get cloudy because some of the amitriptyline gets stuck to the sides, is that okay? And is it just the binder?

 

And do you know of jars or containers that are good for shaking and doesn't leak? When I've shaken my jar, some drops spill out when I open it, is that fine? 

 

Sorry for my English, I'm Danish

 

Thanks in advance

[manymoretodays]

Hi there Blhj,

I just moved your new topic started in the Tapering Forum, back on here to your introduction.

There's a couple places on site that help in answering your question, so this may be the best place for it now.

You titled your last post "tapering off amitriptyline 10 mg- using water solution, looking for tips"

 

I'll add some links for you too here:

Tips for tapering amitriptyline

How to make a liquid from tablets or capsules

Using an oral syringe and other tapering techniques
How to use oral syringes, gelatin capsules, powdered tablets, and do-it-yourself liquid solutions

 

4 hours ago, Blhj said:

I usually make enough for one week and I shake the jar pretty violently before use and draw just after I've shaken it, from the middle of the jar. But it takes a little bit of time to dose it correctly in the syringe, not a lot though. Is that how you should do it? 

 

I have noticed a white layer on top of the water even after I've shaken it, is that okay? Is it the binder or the amitriptyline?

 

Some of it gets stuck to the outside of the syringe, should I just clean it off? 

 

After a few days, the jar starts to get cloudy because some of the amitriptyline gets stuck to the sides, is that okay? And is it just the binder?

 

And do you know of jars or containers that are good for shaking and doesn't leak? When I've shaken my jar, some drops spill out when I open it, is that fine? 

 

It might be best to protect your jar of solution from light.  You could do this by putting it into a brown paper bag in the fridge, or getting some new glass jars that are amber tinted.

Most homemade solutions are good for perhaps 3 days to a week, in the fridge.  If I were you, I think I would stick with just using the same solution for 3-4 days, rather than a whole week.  Just to be on the safe side.  And that's how I did it with my final taper, using a homemade oral solution.

 

Good, good on drawing up your solution from the middle of the jar, after shaking and swirling.  That sounds good Blhj.

 

The white layer is just some settling, could be binder or fillers, or pill/tablet coating even.  With mine, I often found gooey residue that settled to the bottom of my mixing container.  I would just stir and swirl until it was more dissolved, prior to taking each dose. 

 

Yes, clean your syringe after use.  And clean your container/jar prior to mixing each batch.

 

Try Amazon.com for finding good containers for mixing.  I don't know if that is available to you in your country.  I hope so.  Hopefully shipping and purchase of mixing containers will not be too unaffordable.  Don't laugh, but I used sterile plastic urine collection containers when I was still tapering.  I didn't shake the container though.  I just swirled it around and stirred a bit.  Swirling the container around and stirring, rather than "violent shaking" may solve your leakage problem too.    I think glass IS preferable to plastic for a mixing container, as there is usually less stickage that way.

 

Best, always to be really consistent with your method and measuring too.  You'll find more in the links that I gave you too, when you can take a look at them.  And then, just ask, right here is always good, on your introduction.  Be patient as well.  We all do our best to get to questions, as we have time to.

 

Okay, hope that helps.

Best,

Love, peace, healing, and growth,

manymoretodays(mmt)

Edited September 8, 2019 by manymoretodays
additional

[Blhj]

manymoretodays, thank you very much!!

[Blhj]

Hi
I've been off of venlafaxine for 2 years now, and a month or so ago the relentless inner shaking/stress feeling finally went away. I still have other, a bit more manageable, physical symptoms, but the mental ones are pretty bad. I have maybe one day every week (or sometimes every two weeks - in the beginning it was every other day) when I get so incredibly sad and feel completely alone and like noone understands me. Yesterday I cried most of the day, but I couldn't really pinpoint a trigger. It felt like I would be ripped apart by grief. I suspect these episodes with no apparent trigger are a combination of PAWS, my feelings having been suppressed artificially for so long, and the childhood stuff I never processed and emotions I had to suppress back then. I'm seeing a psychologist and a body worker. But this feels a bit like my body just doesn't know what to do with emotions anymore, it doesn't know how to regulate AT ALL. I do remember when I was on the venlafaxine, I e.g. never really cried for 8 years. At the time I thought it was nice, but looking back it was just a way to artificially shove down the emotions my unconcious no longer could hold down when I at 18 started getting body pain etc. instead of feeling stuff. So I know emotions have to come out now, but instead of my being able to do it slowly and safely, they just explode all over the place and I have no idea when and what sets them off. And I suspect I'm thinking way too much about it: reading everything about developmental trauma, suppressed feelings and nervous system regulation and worrying when something doesn't work. Because maybe a large part of it - or at least why it gets so bad - is still the PAWS? What do you think?

Thanks

[Blhj]

Hi guys  I feel some deep need to be understood, as not a lot of people get how severe akathisia feels, so I hope it's okay to write here, even though this post will be very triggering to some people. So: TRIGGER WARNING: past suicidal ideation and graphic description of symptoms and suicidal ideation. 

 

I have marked September the 3rd 2019 in my calendar as the day the last akathisia symptoms had left me. That was almost exactly 2 years after I stopped Venlafaxin and 19 1/2 months after the akathisia started. Another sign that it's truly gone is that I have started having PTSD flashbacks to when I felt worst! Not a surprise, as noone could have gone through that without developing PTSD symptoms. But it's really horrible. Last night I was awake for hours, having a flashback to the worst akathisia moments. For me, akathisia felt like extreme internal stress, an inner shaking of every cell in your body, non-stop. Two years of that was bad, but the first 8 months was indescribable. I wanted to die every second of every day, even those moments I managed to get some sleep, I felt it then too. I had never been able to fully grasp how anyone could feel so bad, either physically or mentally, that they would want to kill themselves. A few HOURS of akathisia made me understand! A few HOURS was all it took! And I have experienced some very painful things, physically and emotionally, so I thought of myself as pretty tough. A few hours with akathisia was all it took for me to want to die. Had I known I would spend 8 months in that hell, I don't know if I would have opted out sooner. I have a hard time processing what happened to me, because how can you get all that pain out?? How can anyone ever understand what that torture felt like? If any of you have some good suggestions for how to deal with this, please tell me

 

And now it's hitting me hard how much I put my parents and my two best friends through and it's absolutely heartbreaking. Especially my mum who's pretty sick from MS, I spent every other week with her for months because I couldn't be alone. Imagine your adult only daughter feeling so bad she has to stay with you, and almost all she does day and night is pacing the living room in frantic circles, shaking and crying, mumbling she wants to die, over and over again. That is breaking my heart into a million pieces. My poor, sick mum, had to see me like that and hear those things. At least I had some evenings when I could watch tv shows with her, and I could keep myself relatively calm on the outside, even smile and laugh, so I think she thought that part was nice. But her MS got worse seeing me suffer like that for so long. She denies it, but I know that my symptoms were the cause.

 

And I'm thinking about how those four people I love most in the world, how they had to listen to me break down time and time again, and how I finally told them, when I couldn't take the akathisia anymore, that I was so sorry but I would have to leave them soon and I hoped they would be able to forgive me. I thought about how I would kill myself. And I had always been so scared of dying, SO scared! But like people who jump from burning buildings, it's not because they're less scared of jumping to their death than anyone else, it's just that dying in the flames is worse. I heard my dad's helpless, but relatively calm voice on the phone, asking me if I had thought about how I would do it. I told him how, I even think I laughed a bit out of desperation, and he said that way would be very messy and I had to think about who would find me. And that I couldn't tell him when I would do it, because he wouldn't, couldn't allow it to happen if he knew. I cried so much when I hung up because I would break his heart. When I told one of my best friends, I could hear that he was crying but trying to hold himself back, the only time I've ever heard him cry. He said that I could get through this and that he wouldn't forgive me if I did anything: his attempt to try and keep me here a little longer. I've blocked my mum's response. I simply can't remember, because it was soulshattering for me to tell her. To tell her that her only child couldn't continue living because of symptoms she could hardly see on my body. I think she offered that we could both go if it got that far. 

 

It sounds horrible that I told them that, but I was at the end of my rope, and I didn't want to suddenly go and not tell them goodbye. Every second I was still in my body was torture beyond belief. At that point noone suspected PAWS and that my symptoms were akathisia, because I wasn't shaking that much on the outside. Nothing helped me at that point, no medicine or anything, and I was actually being tested for Cushing's Syndrome (cortisol-producing tumor) because of high cortisol levels. Nothing found. Only this summer did I find out about this page and what had happened to me. Noone suspected anything before that and noone helped me or took me seriously. I feel a lot of anger about that, but I don't know where to place it.

 

I went to the ER with a friend at one point, and I dragged my two best friends to doctors' appointments several times. I spend so much time on my friends' couches because I couldn't be alone. I would just lie there and shake and try to watch something or just look out the window, trying to stay alive for an hour at a time. I managed to give my dad a bout of anxiety and depression. I couldn't tell anyone in the health care system how close I was to suicide, though, because they would be able to stop me from doing it, and if I really couldn't stand being alive one second longer, I had to be able to kill myself. I couldn't risk anyone stopping me.

 

I don't know how I can get over how I was tortured in my own body. I don't how if I can ever forgive myself for what I put my loved ones through for so long. At least the flashbacks means that I'm no longer in PAWS but can start to recover from it ❤️ Anyone else with similar stories? It would help me feel less alone in this  

 

I know that I must be incredibly strong for surviving this, for holding on to life for so long, so I know I can process this as well, and this is the start. And don't worry, I have a therapist, but he doesn't really get the PAWS thing and I don't really need him too. I just want to know that I'm not alone in having these horrible experiences. Thank you

 

 

[bheb]

On 10/22/2019 at 2:38 PM, Blhj said:

I have marked September the 3rd 2019 in my calendar as the day the last akathisia symptoms had left me.

 

Wow this was very powerful and inspiring to read. Going on 2.5 years here, thank you for sharing.

 

And yes I really relate to the desperation. I am glad you had good support at least. 

 

I don't consider myself healed but there are many just like you who describe themselves as being traumatized. Recovering from akathisia is one (glorious) thing. Recovering from the trauma of it, is another altogether. Don't be discouraged if your mental state takes a bit of a toll. Your mind is working out how to feel safe and okay in your body again.

[Blhj]

Hi bheb

 

14 minutes ago, bheb said:

Wow this was very powerful and inspiring to read. Going on 2.5 years here, thank you for sharing.

Thank you so much!  It definitely helps in the healing process to know that understanding people have read my story and can relate to a lot of it. So thank you for that, it means more than you know  

 

And "good" to know that others have been traumatized as well so that it's not just me being "too sensitive".

 

10 minutes ago, bheb said:

Your mind is working out how to feel safe and okay in your body again.

Yes, that's exactly what I feel is happening! Thanks for explaining it so well. I do feel that because my system was so severely hijacked for years, my Mind/Body doesn't trust itself anymore. Finally, I feel that my nervous system is "mine" again and I can start to influence it, but having it been taken over like that by an unknown horror (didn't find out about PAWS until a few months ago) was so traumatic. I'm starting to get to know my nervous system again and trusting myself more and more. 

 

I'm very sorry to hear that you're not healed yet. Wishing you the very best of luck - you can do this!

 

[bheb]

18 minutes ago, Blhj said:

es, that's exactly what I feel is happening! Thanks for explaining it so well. I do feel that because my system was so severely hijacked for years, my Mind/Body doesn't trust itself anymore. Finally, I feel that my nervous system is "mine" again and I can start to influence it, but having it been taken over like that by an unknown horror (didn't find out about PAWS until a few months ago) was so traumatic. I'm starting to get to know my nervous system again and trusting myself more and more. 

 

Yes, it does feel like nervous system being hijacked! The agitation like being plugged into electric socket and no amount of calming, soothing, meditating can settle it (at least personally -- meditation helped me sleep but not calm the sensation while conscious). You just have to hold on for dear life. 

 

Wow, so you lived in the dark for over a year? Not knowing what was happening to you? I at least knew the entire time. I'm a rare case in that I was diagnosed. My doctor spotted it before I ended up researching on the internet or anything. So I'm grateful for that. 

[Blhj]

Exactly! Nothing helped me, and I really wondered why. I even felt it in my sleep, but I rarely slept much. It was a coincidence that I stumbled across this forum. My akathisia started 4 months after I took my last pill (after having been on them for 8 years), so noone suspected the connection. Instead, I was being checked for different tumors and endocrine cancer for 8 months or so which was also traumatic in itself. Endocrine cancer is almost always fatal, but at the time I didn't really care if it killed me because of what I now know was akathisia. And yes, basically 1 1/2 years without knowing. The scariest time in my life. 

 

I'm so sorry that you're having PAWS, but at least you know what's going on with you - I guess we have to celebrate the little things

[LaurafromCT]

Hi Bljj,

 

I had a similar situation. I developed leg pain which started 2 months after my very fast taper and it progressively got worse and worse over time. I thought I was going to be in a wheelchair. I spent thousands of dollars on tests and doctors etc. I finally reinstated the imipramine at a micro dose (0.04 mg) and my Dr also prescribed a low dose of Trileptal 37.5 mg and now I am about 30% better but I am stuck at this point and not improving. You can read my thread.

Question: why did your Dr put you on Amitriptyline and not reinstate the effexor? Just curious.  Also do you have compounding pharmacies in Denmark? Maybe they could mix you a solution which would work better. My Dr wrote a prescription for 0.1 mg per ML solution and they did it in a sugar syrup. I still have to shake it.

This PAWS is horrible isn't it?

By the way your English is absolutely perfect. 

[Blhj]

On 11/27/2019 at 3:07 PM, LaurafromCT said:

Hi Bljj,

 

I had a similar situation. I developed leg pain which started 2 months after my very fast taper and it progressively got worse and worse over time. I thought I was going to be in a wheelchair. I spent thousands of dollars on tests and doctors etc. I finally reinstated the imipramine at a micro dose (0.04 mg) and my Dr also prescribed a low dose of Trileptal 37.5 mg and now I am about 30% better but I am stuck at this point and not improving. You can read my thread.

Question: why did your Dr put you on Amitriptyline and not reinstate the effexor? Just curious.  Also do you have compounding pharmacies in Denmark? Maybe they could mix you a solution which would work better. My Dr wrote a prescription for 0.1 mg per ML solution and they did it in a sugar syrup. I still have to shake it.

This PAWS is horrible isn't it?

By the way your English is absolutely perfect. 

 

Hi LaurafromCT! Sorry, I didn't see your post! 
Answer to question: He didn't know what was going on with me, so he just tried to prescribe anything that might help me. I did try to take a small dose of Effexor at one point, also before I knew what was happening, and it just made it worse. I don't think we have the possibility to compound it here, but I'll try to check it out.

Yes, it's the absolute worst.

Thank you ❤️ 

[Blhj]

So, I think I'm maybe experiencing PAWS from the amitriptyline taper. OR I'm in a wave from the Venlafaxine/Effexor PAWS. Because I'm getting more symptoms in general for no reason: extreme feelings of loneliness, anxiety, sorrow, and physical symptoms like itching and a "shaking" of the cells/physical anxiety or fight/flight. I'm over 2 years out of the Venlafaxine that I fast-tapered and I'm still experiencing a lot of symptoms, especially emotional ones and being very sensitive to stress, sound or emotional triggers, and I can only work a little, but these last 2 weeks have been very hard and some of the old symptoms are back. I'm tapering 10 % every month, and now I'm so scared that I've done something wrong. I'm down to 4,8 mg and have been for 10 days. Does it make sense that my nervous system is still so sensitive even though I stopped the Venlafaxine 27 months ago? I'm feeling hopeless  Thanks in advance ❤️ 

Oh, I just remembered: I use the same solution for 12 days now, because I make the same dose as before, but it lasts more and more days because of the taper. Maybe it goes bad? 

[Blhj]

Hi all  So I reinstated from 4,8 mg to 7 mg amitriptyline because my PAWS symptoms have been getting worse these last few months. I was doing better on 10 mg amitriptyline. So my question is, do you think I should just stay on 10 mg amitriptyline until my Venlafaxine PAWS is over, even though it might take years? It helps helps akathisia/agitation. Or should I continue to taper? 

[Altostrata]

Hello, @Blhj, how are you?

[Blhj]

Hi guys  Thanks for asking, Altostrata! ❤️ 

Well, I have been feeling better. But very slowly. The issue for me is that stopping the ADs and the trauma of PAWS unleashed a whole lot of suppressed and never-worked-through childhood trauma and attachment stuff. The akathisia that made me suicidal for the first 8 months was definitely PAWS, but the symptoms I have now, almost 3 years after I stopped Venlafaxine, I see as maybe equal parts PAWS and C-PTSD, both affecting each other.

I can't do anything about PAWS - except for reinstating 10 mg amitriptyline which I did last winter and won't attempt to come off until I'm much better - but for the C-PTSD I'm having therapy, group therapy, and body work. I have read tons about it to understand myself and my reactions and ways to heal, and I get better slowly. I have found an amazing developmental trauma-specialist who is the first therapist to ever win my trust on this level. She has 35 years experience and is amazing at what she does. I never even suspected that what I've been through as a kid was enough to traumatize me and give me C-PTSD, but even though my therapist has been through much "worse", she ensures me that it is more than enough. Everything is in the eye of the beholder, and if you are a sensitive kid, stuff affects you much more and can easily traumatize you. I don't know where I would have been without her  Because it's still so very hard to continue on living sometimes. But with her I feel like I can start to explore and correct my past experiences. Without her I would have been too depressed to function, and I wouldn't even know that it was because I was suppressing all these old feelings, because I couldn't feel them! Or they were so mixed together that it was imposible to attach meaning or words or order to them. Now I've started to feel what happens when I feel things! I know it sounds weird but when you have suppressed for so long (with your own unconcious and then with 8 years of ADs), your feelings are just a jumble of confusing and scary stuff. I couldn't even feel my body, only the PAWS and nervous system stuff. Writing down my feelings in another way of "letting them out", and I even feel better after writing this  

 

I have also gained a lot from my other relationships (and group therapy), really discovered which one of my friends I can trust to be there during hard times, and I'm so lucky to have these people in my life! Not to mention my now boyfriend who I got to know through this forum, actually - who knew?! xD ❤️ 

My nervous system is still very hypervigilant and reactive, sound sensitivity is a huge problem, and the emotional pain I often feel is probably much stronger because of PAWS than it would have been if I "only" had C-PTSD. So yes, some days I definitely still feel like I want out and the pain is too bad. But I AM getting better. I've gone from working 6 hours to 9 hours a week, and hopefully more in the future. And most importantly I have found my sense of humor again. It was totally gone as all joy was just sucked out of me, but laughing is a big part of who I am, so it's nice that I've recovered so much that I can do it more   And it's a nice counter-balance to the times when I just want out so badly. And I can totally feel both things within the same day or even minutes sometimes  

It's too horrible to think of it I won't get much better than this, that would be too much suffering, but I know I AM getting better. If I had written this on another day when I was feeling "good", it would have been much clearer how much better I actually am, I know that  

[Altostrata]

Good to hear you're stabilizing. That reinstatement of amitriptyline, starting in February 2020, helped you feel better demonstrates your symptoms were from withdrawal.

 

Which symptoms did reinstatement help? It sounds like it didn't resolve all symptoms.

[Blhj]

That makes a lot of sense  I do "hope" at least some of the symptoms or the severety of them are still PAWS because that means they can get better. It's just crazy to be 3 years out and still feel so bad at times. 

 

The symptoms the reinstatement helped were mood swings, extreme anxiety and inner restlessness I think. 

[Altostrata]

Which symptoms remain?