I made a post that referenced anti-depressant withdrawal last night, and it reminded me that I've been meaning to make an account on one of those withdrawal forums to discuss how yes, withdrawal is completely valid, but the mind-body connection plays a large role in symptoms that seem to never go away (e.g., someone still having brain zaps five years later, doctors realizing that withdrawal symptoms are still occurring in patients whose serotonin receptors have long healed, etc.). I tried everything - all the supplements, the perfect diet, working out regularly, etc. - but believing that it'd be permanent made it so I healed way more slowly than I could have. Once I understood this, I began healing much quicker.
I changed my mind once I started reading posts about people dealing with issues such as fibromyalgia, tinnitus, headaches, chronic pain, etc. even before they started antidepressants and viewing everything as 100% structural. Anything I'd post would likely have zero meaning on those forums, but I do wish one of them would stumble upon my posts over here someday. I remember what it was like to look at those forums and believe people when they said that withdrawal often leaves one with permanent issues, especially when they go cold turkey like I had to (I was having horrific side effects from the medication and genetic testing later showed that my body couldn't handle it, and I was too paranoid at that point to trust other medications).
What I'd like to articulate with this post is that we are so lucky to have a community where people have a better understanding of the mind-body connection and a real opportunity to take that information and live the best lives we can. Stick with the mind-body approach and remember that horror stories on other health forums do not have to be you.
Well well well.
I just had to create a profile here in order to reply to this. I thankfully stumbled on one of your posts by mere chance on the success threads. It was a pretty long one, and you included a persons success story which left me even more intrigued - I too search for people that have my exact same symptoms and exact same presentation/reaction to stimuli in order to see if they’ve healed and how.
That post really summed everything all up for me. You mentioned TMS, Anxiety, Antidepressant withdrawal, conversion disorder and Functional neurological disorder - all of these either apply to me or have been a diagnosis given to me over the past 3 years. Oh and Lyme disease... don’t even mention how the bloody hell I got Lyme disease in all this!
Yesterday, January 24th, was my 3 year anniversary of ‘this’ - I’m trying not to say what I always call it... which is ‘getting sick’.
Anyway, I came off an antidepressant a few months before this, and had strange symptoms that came and went till the final Big Bang happened and my life changed up until now. Long story short I had was hungover, drank coffee and then found blood on the toilet after straining, which either made me feel lightheaded/drop to the ground due to low blood pressure, or the sight of the blood triggered the panic attack. Either way, my life never was the same after that - massive autonomic storm of symptoms which led me to hospital. Blood got checked, all fine. Got this rocking/swaying dizziness while waiting. It came and went. That night I had continual hypnic jerks while trying to fall asleep. My body was very very stressed. Then the brain zaps came, for about a month, with about 50 a day. The dizziness turned chronic. Anxiety disorder cemented and I wasn’t able to think, tolerate anything - no more paracetamol even. Something happened that changed my body. I blamed the antidepressants but.... I’ve had numerous other self diagnosis too.
My main symptom was a type of dizziness, which has very precise qualities - perfect balance and it’s basically gone laying down. Though burdened with a lot lot more. Yet, I’ve found many that had these exact symptoms from various onset/triggers which confused my mind so much... I went from it being psychological to it being a physical issue so many times in my head. It’s been exhausting. Antidepressant withdrawal fit the bill and as you had mentioned it in your post I read, but several other things I’ve cycled through (I’ve been officially diagnosed with a ‘functional’ disorder), TMS wording used by Sarno resonated with me, and I was working it in my mind for a few weeks now that his theory/wording to help people understand it was nearly a perfect match for my functional neurological diagnosis. However, you really could make it as physical or as psychological as you like, depending on your interpretation of it.
I just had to comment as you hit the nail on the head. I’ve came full circle with you - antidepressant withdrawal forums, which I’ve had a profile and commented, people with the same symptoms, on anxiety forums, people with the same symptoms, functional disorder forums, people with the same symptoms. These people never took antidepressants yet suffered the same symptoms.... people with the same symptoms as this functional neurological disorder that I’ve been diagnosed with... yet see their issue as one of anxiety, completely healing themselves with books like Claire Weekes, DARE or just simply ignoring it. I knew something wasn’t right. All these groups with different issues that they identify with cannot all be the same thing.... or could they?
Then I found you. That settled it, and you’ve actually pieced it all together. Mind body connection, caused by emotions, which summarises it all.
I healed myself (still had some issues) for about 4 weeks during a very busy period of my life where I actually believed that regardless if it’s psychological or physical - illness can be cured by thought alone (you sounded like me), along with positive affirmations, meditation, visualisation (don’t know which of these hit the spot) but sadly after a bit of a fear of vomiting my symptoms came back and I made a YouTube video of a success story and all, but of course it was too premature. I went seeking a physical diagnosis after that setback and unfortunately never recovered as I bought into the idea that my inner ear was causing this, yet... my symptoms are identical to others without inner ear issues. It really confused me. There are certain patterns I’ve been observing which have made me more curious again. Inconsistencies if you like. I get better when I have the flu or cold... remission. My issues mostly resolve after a heavy night of drinking (worse with the hangover, but after that leaves, I’m pretty much in remission for a day or two). I’m symptom free or low symptoms in the morning, and sometimes at midnight. I find if I’m having bad dizziness, deep breathing can reduce it massively. Distraction, but it had to be absolutely distraction, not just a convo, can alleviate some of the symptoms. However these characteristics are being recognised in medical literature and studies! Under the bracket of Persistent Postural Perceptual Dizziness, which is a type of functional neurological disorder. That has been my official diagnosis given by a neurotologist. Described as a ‘hypersensitivity in the brain’ akin to migraine, but not precisely that. The reasoning behind treatment with SSRI’s is because it would ‘dumb’ down the hyperactivity and error signals, whilst also increasing serotonin that is meant to be connected to inner ear neuronal activity. Even though I’ve structural inner ear damage, it’s mild and compensated for (I’ve no idea how I got this, as my onset of issues weren’t exactly the traditional story for Vestibular Neuronitis). To me, it may be a possible red herring. Along with the Lyme disease also being a red herring. I don’t tend to experience either of their symptoms.
Of course I’ve labelled myself with various things over the years, and still to this day have fear in the back of my mind about antidepressants, what they did to me, their potential to damage people permanently, not being able to drink alcohol etc, can still be in the back of my mind, even though I’ve equally understood this to be FND. Anyway, I’ve conditioned myself to associate prolonged travel with a worsening in my dizziness (I thought I had Mal De Debarquement syndrome. It’s actually being compared to my functional disorder as basically the same process but different trigger in medical literature), and it’s ruined my life. I’m fine during travel but not after I step out - this quality to my dizzinsss has been a hot topic for me in my search (refer to above about me searching people with the EXACT SAME presentation and reaction to stimuli which I’m very hung up on as it technically puts me in a different category diagnosis of life long illness between my official diagnosis of Persistent Postural Perceptual Dizziness or Mal De Debarquement Syndrome). Of course a few times I’ve felt fine (when distracted or anxiety had been non existent, but still not feeling quite right after the journey, if you get me) yet I can’t break that association or maybe it’s not an association... I don’t really know.
After reading the studies on these conditions the doctors are isolating the cause behind these functional dizziness disorders as an issue with the hippocampus:
https://www.frontiersin.org/articles/10.3389/fneur.2018.00943/full (Examination of Current Treatments and Symptom Management Strategies Used by Patients With Mal De Debarquement Syndrome)
So I can’t get that issue of being psychical out of my head. You get the idea? You know what also is very funny, they say that there is 80% improvement in patients who take SSRI’s to treat this functional dizzziness, then I told my doctor.... but I just came of an SSRI before I got this damn thing!!!! Don’t you see the connection?! He said it may be a possibility, but there’s no guarantee it had a part to play. Hyperactivity in the brain, after 2 years of antidepressants that did the reverse (numbed the brain). Then I see people who got this from anxiety alone, how do they fit into this if they’ve never touched an antidepressant- this is where your post above is fantastic. I love how you’ve figured it all out and have went from a closed mind to open.
I just want to say, what can you say to me that can help me? I’ve read your long post success post. What do I do when I feel my dizziness at a table, or hear my tinnitus at night, or see my eye floaters outside. Is there a method? Or do I merely repeat and understand.. these are symptoms from my emotions that I got from a panic attack 3 years ago?
Did your symptoms vanish quickly? How long did it take? Any tips?