SSRI withdrawal induced neuropathy

Im reading Tamaras book. Its amazing and im in chapter 5. Something ive struggled with and im hoping someone can answer this:

I am NOT a people pleaser, helper, over achiever or self critical but i am somewhat of a perfectionist, a procrastinator and worrier. Im also highly sensitive and get my feelings hurt easily and i also ruminate when i do. My 38 year marriage has been somewhat toxic with a lot of hurt feelings. Im trying to change my beliefs around my husband and ive made progress with this but its a work in progress. Im working on being over sensitive too. I also havent worked for 25 years so no stress there.

All this to say, did i have nervous system issues before, yes, and i had a bout of depression during peri menopause and years later, anxiety that led to my SSRI use. With all this im still not convinced that had i not had my butt kicked by withdrawal would i have ever become chronically ill. I was physically healthy before withdrawal and was in a good place mentally with the issue resolved that caused the anxiety when i started tapering off my medication.

i did not end up here organically by having a very stressful life and a history of childhood trauma. My TMS was triggered by a third party substance that directly affected my nervous system and threw it into dysregulation. Does this matter for recovery? Does it make it harder to recover? Ive struggled with this and hope someone can answer it.

 

The most important things that you need to understand are these:
1. Depression, anxiety, and chronic pain are connected vessels. When your brain is overwhelmed and can't cope with emotional issues, it sends you a signal of physical pain.
2. Perfectionism is another form of anxiety (somebody on this forum made this excellent point, you can search for discussions on perfectionism to get more details)
3. A highly sensitive nervous system and obsessive rumination on hurt feelings predispose you to chronic pain (see #1 above) as your nervous system has a hard time coping with hurt feelings.
4. Being physically healthy does not mean that you cannot get chronic pain. There are quite a few young, athletic, and physically very fit people on this forum with chronic pain. Why? Because chronic pain is not a structural problem, it is a mental problem (see #1 above).
5. SSRIs put you in a good mental place, but it is an artificial calm. Once you get off those, you may end up being back to the state you were in when you started taking SSRIs. There are many posts on this forum reporting on depression and anxiety going through the roof after pain subsided and vs. verse.

I hope it helps.

 

The stress can come in "drips" - one eg. is you have a stress bucket. It gets filled - mostly internally generated stress (even if it's towards external stressors) - Sarno's theory is that it creates rage. Personality traits like perfectionism create internal rage and most perfectionists and over achievers are very self-critical and judgemental - they do the things they do perceiving that they need to "do" in order to be loved, cared for etc. they tend not to view themselves as being people who will be loved for simply existing. Worriers are anxious people, people who procrastinate often tend to be internally disorganized, anxious, stressed and often operate with low self-esteem (see self-critical self-judgemental) and find self-discipline challenging.
You've described yourself as kind of polar opposites, which while not impossible, certainly is unique.
I like that you are trying to be honest about your traits - all which have positives and all which can have negative impacts on your emotional health. Looking a little more into your self-perceptions might give you some ideas of things that can trigger you. Not that you need to necessarily turn over every rock and stone. The idea is to be open and willing, inquisitive, and curious about the drivers. I don't ever rule out anything - I always thing "Uh, maybe! Maybe I haven't looked there or many I've been afraid to look there". Sometimes I don't even look (heck, this stuff is subconscious) I just categorize these things as normal functions of the mind and accept the fact that perhaps I've got some pretty dark corners and that's OK because I'm a rational adult who doesn't act on them.
As for your worrying and questioning about trauma and anything else making it "harder" to recover, those are just thoughts. Nothing there is truth. NOTHING at all makes one person more apt to find recovery than the next. Not the amount of "dysregulation" (I'd work on beginning to get that idea out of your head. Labels are mind-set killers and the more you think the label applies to you, the more your mind is gonna believe it!). Don't worry about how "dysregulated" you are, don't consider you are "worse" than others. Begin to notice that you have these repetitive thoughts and worries and just watch them (this is pure Claire Weekes "floating" method) Claire suggests we see these thoughts as clouds floating by (I've heard others describe it as leaves floating by on a stream). The job of our mind is to think. To simply churn out endless amounts of chatter. Some of us pay more attention to it than others. Learn to pay less attention to that stuff. There are FAR more interesting things in the world to think about.
I learned to watch these thoughts float by, eventually learned to laugh at many of them and began to replace them with my passions - I have repetitive worry and I think about my next garden, they start coming fast and furious I begin to think about lyrics to a favorite song. This is how to use distractions appropriately. If the worries are fear based, allow yourself to feel the fear - let your mind sweat it out but don't attach judgements to the fears - you feel the emotion while letting the thought float on by.

 

Thank you so much for your reply Cactusflower!

Gives me things to think about. I would have been interested in this work anyway. Like my procrastination over housework. I would stress all day over 30 min work. Crazy. Thirty minutes before my husband was due home i would panic and rush to get it done. Drove me nuts i couldnt just do it when i got up and enjoy my day.

i have heard of Claire Weeks and have read some of her work. I will look more into her.

Thank you for reassuring me there is no such thing as being too ‘dysregulated" to heal. I think because ive tried so many things to heal over the past 4 years and not seen much healing it made me feel like maybe i was different. Thanks for reassuring im not.

i like what you said too about replacing ruminating worry in your head with song lyrics or something else. I do try to feel fear if it comes up. Im trying to learn to detach myself from my emotions and let them happen but not buy into them so they get worse. In IFS the part is called the “self” part. The wise self that observes without judgement.

 

What ssri were you on and for how long? Last year I knew very little of these drugs. I was prescribed 30mg Amitriptaline for sleep and nerve pain. I had to stop after a week due to horrific side effects. I was then prescribed 15mg Mirtazipine then stopped after a week due to side effects (urinating blood clots was one of the most severe). A few weeks later I experienced a nervous breakdown, severe anxiety and my autonomic nervous system went crazy. I didn't know what happened and it was only in retrospect did I understand it was very likely the withdrawals that caused this (I didn't know what withdrawals were at the time). I was then put of Clonozapam for a few days to deal with the breakdown then developed akathasia and severe anxiety from the withdrawals of the benzo. I was so naive and vulnerable at the time - I didn't understand the impact of what was prescribed and doctors do not explain the risks of treatment. I do think these drugs can be nasty for those with sensitive nervous systems and can cause horrific effects in people but I don't think they are permanent. I would have thought that, in your case, many months/years later, your body would have gone into homeostasis and the effects of the drug would have gone back to baseline. Over the past six months I've been taking very low dose mirzatapine (3.75mg) for sleep. I withdrew a couple of months ago and I'm experiencing burning sensations in my skin and itchiness. I do believe this will subside in time.

 

"I was physically healthy before withdrawal and was in a good place mentally with the issue resolved that caused the anxiety when i started tapering off my medication" --> Could it be that the issue you have referred to caused the TMS?

 

Doctors don't give a ... about the risks. They have to eat too.

Many killed themselves because of these horrific side effects or stopping the medication. Some go nuts and go around and kill others/innocent people using guns and then they commit suicide. There are books about it but no one cares. One has to actually be a patient on these drugs - someone who experienced all these - to understand the horror of it.

But as I said, doctors don't give a ...

 

Hi Mike, im so sorry you are dealing with this! I was on Lexapro/Escitalopram 20 mg to begin with for anxiety. I never had insomnia in my life and as a side effect i could not sleep. I was up until 3 am every night and also had restless leg syndrome, which i had before at times but it was much stronger than my normal restless leg. It did stop my anxiety so I stayed on that drug for about 9 months until my health issue was resolved. I was told to taper over a month cutting my pill into quarters. I had severe dizziness, pinching nerve pain all over my back and felt like i had the flu, but i did manage to get off it. Around 3 months later on top of the nerve pain( which i thought was caused by something else) i started having bad intrusive thoughts and not knowing about withdrawals i thought it was my anxiety returning so i went back on half the pill but it didnt stop the thoughts so i went to my doctor because of the insomnia and she prescribed Effexor/Vemlafaxine 75mg. My thoughts and nerve pain went away but on that drug i developed severe insomnia. I was up 36 hours straight at least 4 nights a week and only slept 4 to 6 hours when i could sleep, i also felt like a zombie on the medication. I tried for 2.5 months to deal with it and even tried a sleep aid but i decided i wanted off. I tried the month long taper and no way was that going to work. I got severe withdrawals with my first cut in dose, all over buzzing, nausea, felt like i had the flu. I went back to my doctor who had no idea how to help. So i ended up in a facebook group for that drug with people who either were in withdrawals or were trying to desperately get off the drug safe;y. It was there that i learned about withdrawals and the 10% taper method so i started a slow taper. I got down to approximately. 2.5mg from 75mg over 6 months time. I did well with my cuts until that point with my symptoms resolving usually 5 days after each cut in dose. I thought i was safe to drop off there because it was getting impossible to weigh my dose on the jewelry scale i was using. My withdrawals were much worse than any of my previous cuts but i could tolerate them. In hindsight site i should have reinstated and kept tapering down but i had no idea i could end up with TMS. I had bad flu like symptoms, heart palpitations, all over buzzing, anxiety, insomnia and burning nerve pain. I also had bouts of rage which i had never had before in my life. I thought eventually it would stop. I had no idea prolonged stress on the nervous system could change your baseline from normal to chronic fight or flight. I estimate about 6 months in my withdrawal is when the switch into TMS was flipped. My flu like symptoms and rage went away but the burning nerve pain, buzzing and anxiety remained plus i started having panic attacks, muscle spasms, started reacting to foods, and supplements. Ended up on the SA,org website and learned about protracted withdrawals but they assured you that most everyone heals in 1 to 5 years. At that point i felt i was too far out to reinstate so i tried to stay positive and kept going.

For 3 years i did ok with just distraction and trusted that i would heal eventually. My symptoms, slowly started to improve and i got to 80% healed, i could see the light at the end of the tunnel. Then i made a mistake. I changed my diet which caused constipation. Instead of changing my diet back, i took a laxative. Now i had taken this laxative before, many many times with no issues but this time my brain didnt like it. During this time i also had increased anxiety because of covid and because i wasnt well physically i had a lot of fear and didnt feel safe. That combo of the laxative and my emotional state set off a chain reaction in my system and in 3 weeks i went from 80% well to the sickest i had ever been in my life. Severe insomnia, extreme burning nerve pain, rashes, severe muscle spasms, severe sensitivity to light and sound, had to come off of every supplement and medication i was on plus i started reacting to foods. By the end of the 3 weeks it was just me and 4 foods. My mental health also was greatly impacted. I became suicidal and depressed, lost all hope, became emotionally dysregulated, with bouts of crying hysterically and bad anxiety attacks. That was 4 years ago. Ive never even come close to that level of health i had before the setback.

I think once TMS is triggered and its fueled by extreme fear, which mine was, it prolongs it greatly. If i had not had my setback im sure i would be healed by now. Years ago. I wish i had found out about breathwork, somatic tracking and meditation during my first 3 years. After im well I want to take everything ive learned back to the withdrawal community and hope my story helps someone else. They seem reluctant to believe its TMS but it is. My symptoms match a lot of others with chronic illness so i know its TMS. Im glad you found your way here too.

 

I am not surprised by this and doctors take advantage of vulnerable people. I hear lots of stories of people who took amitriptaline for nerve pain without knowing it's actually an antidepressant! I didn't either and there was no informed consent. The Dr just instructed me to take it and advised me not to read up on it or its side effects and to "trust him" ... and so I did out of desperation. My pains were so severe and they were (and are) TMS pains. However, since taking antidepressants and benzos I have not been the same since. Mentally I have a level of anxiety/agitation that is crippling which has tensed all my respiratory muscles making it hard to breath and relax. I think these drugs may help people but for every person helped how many do they harm? After I read your post I did a little bit of research about mass shootings in the USA and how a proportion of the perps were actually on SSRI. If I ever survive this era of my life I want to make it my ambition to help other vulnerable people ... I want to do some good in this world and help others not go down this path ... it gives me an incentive to live. All I'm asking for is informed consent i.e. patients have to understand and agree to the risks of treatment (including withdrawals) prior to prescription ... and that has to be signed and dated by both patient, physician and a relative.

 

Yes its criminal. And the lie about you having a chemical imbalance so you need the drug to correct it. And then doctors gaslight you when you tell them how bad your withdrawals are. If every person had to stop taking their anti depressant today we would have a drug interaction epidemic that would make every other that came before it pale in comparison. I will never ever blindly take another medication again.

 

There was a woman in the fb group i was in that had survived breast cancer and because she was having hot flashes as a side effect from her hormone therapy drug, her doctor prescribed venlafaxine. For hot flashes! She also had severe withdrawals trying to get off it. She was livid.

I agree! There needs to be a much greater warning given to patients. Thats a great goal to have.

You will make it back to health again! Dont give up hope. I know how hard it is. If everyone else can heal, we can too!

 

It's interesting you mentioned Covid. I'm not sure if the laxatives and diet change are the root cause, perhaps they were factors that made things worse. I have a similar story. One thing I know for sure is that after contracting Covid my health was never the same. For years after I was fatigued (I was very active) then I experienced severe light sensitivity. I believe Covid was the seed that weakened my resilience then other stressors in life (diet changes, herbs, laxatives etc) facilitated the shift from rest & digest to fight or flight. Look at the stats of death rates from suicides and other factors like cancer following the pandemic. I'm no conspiracy theorist but I do believe Covid is the culprit for a lot of ills ... not the acute Covid but the LONG Covid i.e. its long term consequences.

Please do not blame yourself ... none of this is our fault ... but we can overcome this now that we have the knowledge. I read about a guy who was hooked on the lethal Clonozapam then lost everything when he cold turkey'd ... his apartment, wife, job etc. It took him years to rebuild his life and he did in the end. We didn't take those drugs for years/decades ... others have it worse. My biggest challenge now are the TMS symptoms and this forum has been amazing for that.

 

Withdrawals initially flipped the switch but I think it was the laxatives( something my system wasnt used to) plus the anxious state i was in that did it. The current state im in with my body stiffness same thing, i had a period of hightened stress plus strenuous exercise triggered the stiffness. The strenuous exercise was something new my brain didnt like. I didnt have the tools to relax my system like i do now.

There were many in the self healing groups i was/am in with long covid. I saw many success stories of full recovery using neuroplastic tools to heal. My son too says after he had covid he still has fatigue in his system. He never went back to where he was before. Yeah covid and everything to do with it has hurt a lot of people.

 

Thanks - that's useful. Do you know what neuroplastic tools they used to heal? Any sites or groups you can recommend?

 

Ive tried lots of healing programs over the last 4 years and they all had Long Covid success stories. From my understanding Long Covid is a form of Chronic Fatigue Syndrome. Other than this forum, the only group i actively follow on fb is run by Miguel of CFS recovery.

https://youtube.com/@cfsrecovery?si=-7OKdoiO_kkn98Uh

while i dont have CFS, there are similarities with my symptoms and i like their approach of slow and steady. Push a little and then pull back. They have a ton of free information on their youtube.

I think they use visualizations and exposure to fascilitate healing but im not sure exactly. I need body based tools like somatic tracking, breathwork and meditation. A lot can heal with brain retraining but it was too powerful for me.

Miguel explains it here:



i need to watch it and see just what they do lol.

Their fb group is very supportive too and they always take the time to thoroughly answer questions.

 

I really like that video, @Janet65. The finding of a small 'reference spot of safety' and that spot only needing to be present for as little as 1 second for you to go back to and build from is excellent imo.

 

i watched it too. Reassured me. I struggled to find any safety for so long.