Hi everyone. I hope that you are all well and thriving. Please could I ask for some help in with research into causal factors of FND?
In Nov 16 developed Serotonin Syndrome (SS) after being injected with pethadine post-op. (This also happened after a previous op, 6 years earlier, but the medical team missed my warning.) Immediately after my BP shot up to 230/180. I was rushed to ICU where my heart & breathing stopped (I was revived, obviously!)
Myclonus (both hands and legs) started immediately and has continued, worsening gradually, ever since. My 'offending' meds were changed as they had rather belatedly recognised the danger.
I had a 2nd heart attack and revival 2 days later.
So instead of a 'relatively minor procedure' & 4 days in hospital, I was 11 days in ICU and another 17 days in a ward, being discharged with no proper support (or a diagnosis) on 23rd Dec.
On 2 Jan the consultant neurologist confirmed his immediate diagnosis as SS due to the clash (between pethadine and the meds that I had taken for 25+ years). I hadn't been told to discontinue these meds before the op. He also stated as a firm diagnosis that the SS had developed into Lance Adams Syndrome, which is rare and is described (roughly) as myclonus after a near-'death' experience.
He later changed his mind about the LAS (after my solicitor wrote to the hospital to ask for copies of my medical notes). At the end of Jan he changed his mind, back-pedalling furiously & suggested that I simply had a 'neurological condition' that a MDT could address.
He did nothing whatsoever to teat m save for telling my GP in June (but not me directly!) that he didn't want to treat me any more.
In July, (again via my GP) he referred me to a consultant neurologist in St George's, London, who holds a clinic Dublin once a month (where this happened). I saw him in late July and he immediately diagnosed my condition as FND.
So after eight months of my regular falling, walking only with frames or using a wheelchair, shaking uncontrollably, stuttering, suffering anxiety attacks and a number of other unpleasant symptoms, I finally had a firm diagnosis.
Then I learned that, apparently, there is no neurologist in Ireland who can treat FND and that I would have to travel to the UK.
The original neurologist later claimed that he had diagnosed FND (which was news to me as neither of his reports mentioned FND or similar.) If he had known in Jan that it was FND, but that he couldn't treat it, why then did he wait until July before recommending someone who could? Grrr! He also 'forgot' (I am being generous) to sign a 'Treatment Overseas Form' from my Health Insurer. This despite three letters, a dozen phone calls, two letters from my GP etc. I am left to fund everything - treatment costs, flights and other travel and accommodation.
Happily, I am due to fly to the UK in about 10 days time for 5 days intensive physio and other treatment.
Now my questions:
Has anyone had a similar experience (chemical clash triggering the start of FND)?
What happened? Your experiences would be useful to hear.
Could you prove the link between the clash and FND? How?
All and any answers gratefully received.
Many thanks
Robert, Dublin
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RobertWT
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15 months off antidepressants, and still in severe neuro damage. You know about dr Peter Breggin? You know antidepressants are neurotoxic? Nothing just functional in their toxicity
There are support groups about that on facebook,online...are you part of them? There are some advices there
I am (also) bipolar for about 50 years (and various other stuff) and have been on antidepressants in the past. Off now.
On other meds for various other stuff. Epilim for myoclonus, insulin and metformin for diabetes and the list goes on and on.
Seeing experts in London in two weeks. Hope that a pharmacognitist gets a look-see at my meds.
I am a practicing Buddhist (33 years in May) and I find that chanting (Nam myoho renge kyo) helps. I can whole heartedly recommend the practice.
Contact me if you'd like more info:
robertwt52@gmail.com
I saw another thread on emotions. Mine have been so heightened since my neurological happening in Nov 2016. I grieve for victims of war and feel guilt about the carpet bombing of German cities - as if I had been there and taken part!
I have very severe reactions to anything that affects my serotonin levels, including the massive jaw clamping mentioned regularly online. I have rarely been able to take more than one or two tablets before my whole body clamps up...triggering FND seizures.
I was able to take Pristiq (SNRI) for 6 months (I desperately needed it for PTSD), but my seizures increased 10 fold in frequency (several days a week, instead of one or two days a month). I eventually 'accidentally' went cold turkey because I forgot to pack the tablets into my medication pack for the week.
By the time I realised that I had forgotten them, I was at the worst of the withdrawal symptoms...something I wouldn't wish on my worst enemy. But I persevered, and discovered one of my other meds prevented the worst of the withdrawal symptoms, 'brain jags', they call them, flashes of energy racing around inside the head, like a bolt of lightning,. Very serious and usually permanent, and nothing to do with FND.
I know take a low dose of Endep (Amitryptiline) that is just high enough to mostly manage my PTSD and keep my head quiet, and just low enough not to trigger jaw and muscle clamping.
So i hear what you are saying about Serotonin Syndrome. Serotonin is a very important chemical required inside the brain, but to take meds for it can be quite dangerous - extremely so in your case.
I'm not a doctor, I've just had way too many medical problems over the years, so I've learned a lot from my own experiences. What you've described sounds to me like you might not have FND, just side effects of all the stuff ups with Serotonin that you've had. Whatever, it doesn't really matter what has caused your medical issues. It's treating them that is most important. Because of the wide all encompassing nature of a FND diagnosis, you will probably get the most beneficial treatment under the FND umbrella. So our FND family will keep you in our arms.
Have you joined any of the Facebook groups for FND people? There are people in those groups from all around the world, so there will probably be others in that group from Ireland. I know that it helps to find other people local to you who are going through the same issues that you are. I've found the FND Facebook groups have been very helpful for me. Some of the groups have a list of medical people who have helped people with their FND, in the Files section of the group.
Hang in there. You will eventually get some of your old life and most of your new life back with the treatment program you are planning on attending. Once you're there, see if you can get the service providers to write detailed referrals back to your local hospital and medical support teams. That way you can continue treatment when you return home, and you're also educating your home team to think outside their neat little square boxes. Best wishes.
My neurological symptoms get significantly worse (whether im having a flair up or not) when i take Tramadol and/or Neurontin (Gabapentin). In fact, the specific symptoms of FND that brought me to a neurologist only started after I started taking those two medications in tandem. Prior to that, I had been diagnosed with Fibromyalgia for 8 months without any Neuro symptoms.
Within a few weeks of starting the medicine, I began to have uncontrollable jerking episodes and tremors that got worse and worse by the day, finally landing me in a hospital for 3 days. When I stopped the meds, the movements slowed down dramatically, but never fully went away. I have a lot of back problems and have been given thes two meds periodically over the last 8 years but I am unable to take them for extended periods of time because of the dramatic increase in my symptoms.
Of course, I told my Neuro all of this, but she is still quite insistent that my symptoms are psychologically based. My therapist for the last year and a half strongly disagrees, but when she told the Neuro that she did NOT believe my symptoms were psychosomatic, the Dr. (who ive only seen 3 times) basically told my therapist (of a year and a half!) that she needed to "get on board" with her diagnosis. Somehow the Neuro thinks that my three 30 minute appointments with her gave her more insight into my emotional state of being than the weekly 1 hour sessions I've had with my therapist for 1.5 yrs. Go figure! She wouldn't even consider the evidence my husband and I presented for the correlation with my symptoms and the medication. Needless to say, I won't be going back to that neuro. Ok, can't over!! 😧
My trigger probably was serotonin syndrome syndrome brought on by a major clashbetween antidepressants, lithium and anasthesics. Tremours and wrong treatment ( i believe) for SS have made me the man I am today! (Lol).
Fighting on. Cannabis oil prob the next step for accute anxiety (which about 85% of us suffer with.)
Hi ho. 50 years on and White Rabbit still sounds amazing. A 65 year old Buddhist hippy!
Be well. Show the doctors that you are just amazing. Strong. Beautiful and perfect.
Hi Robert hope you are at your best I kinda hate it when people say how are you or words to that effect so in 2010 I had a years worth of opperations to remove tumas from my bowl I recoverd at the start of 2011 I started having breathing problems I was rushed in where they found a secondary tuma it's in my kneck two operations in that area and I ain't coming back I have been given lithium, antiphycotics, you name it but my left leg is now so deformed loss of use of two fingers and the left arm does what it wants to but I am fighting back with endurance I have scoured the world and found a very interesting but bizzare form of treatment endurance i am researching the effects massive amounts of endurance I have a rucksack that weighs 8 stone and one that weighs approx 6 stone I am putting between 7 and 9hrs per day into various activities using both weights the heavy bag causes just enough to the brain to make it kinda connect the 6stone bag I don't even feel it and need the walking sticks so the idea is to try remap heavy then treat the brain to light bag in theory the brain should start to comply we are going to push me to the point of breaking matey then rebuild what has also realy helped me kick this off is month's of private dance lessons yep the balance the coordination helped alot expensive but fun so my friend I will keep you posted on my experiment because no doctors after making me this bad are going to finish it with sorry you are untreatable I can't accept that not curable I may agree with but untreatable my arse
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