Just wanted to ask if anyone has had any luck with antidepressants or other drugs? I know that they can improve mood but I really haven't met a single person with FND( never mind the cause - stress, physical trauma or anything else ) who experienced they movement getting better on medications. Could you please advise? I am sick and tired of trying different therapies with no luck or if I have any luck then I have to quit it anyway due to other problems. I have tried everything but antidepressants and other drugs( epilepsy drugs etc).
P.S. I do apologise. Some time ago I promised I will post my whole FND story with details of all trials/therapies I have undertaken so far. The thing is ,it only makes sens for me if I include all important informations( all symptoms, therapies etc ). When I do that, it becomes really long...I still have it on my pc but .... There are some things I can't understand and I am afraid nobody would believe me.
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Hi in all honesty I have not found any medications have helped one bit in fact they’ve given me more side effects. So what works for me is good sleep hygiene pacing reducing stress where possible short works when able and a healthy diet. It’s taken a number of years to get to where I am now but I’m much better for it in the long run. Good luck with your journey
Thank you so much for your response. That's why I am so afraid of medications. Even if they help a bit it is still pyrrhic victory. Jogging was working best for me but over 1 year ago I forgot how to bend my knees and as a result I damaged them and there is no jogging any more. I know it sounds crazy to run whilst struggling with movement in general but that's what it was. The hardest thing for me is to start the move. Once I start I can carry on. Thats why walking on a pavement is much easier for me than walking at home in small spaces where I have to change directions, stop and walk again etc.Take care of yourself
Hi it is a difficult thing to discuss medications, everyone is different and everyone with FND has such different symptoms too.
Speaking from my own experiences in having tried a couple of medications for Motor FND symptoms i.e movement, walking problems, rigid or weak muscles/tendons/joints & Stroke like episodes.
BEFORE Diagnosis of Motor FND - I went on a trial of Sinemet Plus which is a Dopamine Control drug used primarily for people with Parkinson's, but can also determine if movement problems are caused by Dopamine Responsive-Dystonia. This was a very effective drug for me, very strong and could prevent my abnormal movement symptoms for about 8 hrs a day. However, to diagnose Dopamine Responsive- Dystonia the drug has to be effective at providing normal movement for 24 hrs - so I was eventually taken off that drug once I had the Neurologist follow up! It is worth noting that Sinemet Plus is a very dangerous drug to use long term (because of serious side effects), also it's effectiveness is known to reduce over time anyway.
AFTER Diagnosis of Motor FND (& Multi-diciplinary Therapies Undertaken) I tried an Antidepressent - which did not solve any of my movement problems and caused me to actually have frequent Panic Attacks (which I did not have before!).
I discussed this with a second GP (not my own as they were useless and as no longer allowed a Neurologist) and eventually was given a different Antidepressent which really did calm my brain and relax my body, but again nothing helped stop the abnormal movement symptoms, and I put on loads of weight etc so decided to stop taking them overall.
What I have found that can improve movement a bit, is Pacing in everyday tasks and for me, stretching out the tight/spasmed muscles/joints/tendons. Osteopathy with Dry Needling if you can afford it has short term benefits in relaxing the tight muscles/tendons (and understand from other FND Sufferers that Acupuncture has a similar outcome) and I found sometimes even applying ice packs has enough to confuse the hyper nervous system feedback and relax the body.
So in summary:
I found anything that will disrupt my brain function/chemical processes that it thinks is normal function - but is not normal function - is enough to allow a few more normal signals through the nervous system.
Not thinking about actions as much as you can and relying on your Spinal Automatic Nervous System for walking can help too.
Try not to push into a Boom-Bust situation if you can, it just overwhelms the struggling brain network with more Adrenaline and that is a frankly a `Flight, Freeze, Fight' nightmare!
Thank you so much. I appreciate your detailed response. It's sad that none of those pills really helped you. I agree, my question was very general. I have got a lot of fnd symptoms and some other health issues like everyone. All of that is so overwhelming. Permanent fatigue, walking problems, coordination and balance issues, terrible slowness, disociative amnesia affecting movement memory, unexplained horrible pains and aches, migraines -these are the most difficult to deal with but there are a lot more. I dont know if there is any medication suitable for me. If GAD was the only or one of many triggers for my FND, then maybe antidepressants would help a bit. But talking about fnd etiology is a hypothesis contest. Some believe in my case it was stress/anxiety,others believe that it is result of my unsuccesful abdo operation. I believe myself it was a mix of different causes but i would blame rolled mesh in groin mostly. As for now I have arranged appointment with fnd physio specialist which is very rare in my country. Also ,I will attend accupuncture clinic. In addition I wil be walking as much as I can. That's all I have got. Hopefully somebody will help me with my knees, as if they were fit , I would be able to try HIIT training which is natural super medication for brain.All the best
That's interesting - I was also put on sinemet initially because they thought I had PD or DRD. It worked so well I was actually able to bowl for the first time in my life! But after I had a "seizure", they changed my diagnosis to FND, took me off the sinemet and said it was acting as a placebo (which doesn't make much sense because I was on it for 2 years). I know other people diagnosed with FND who were put on antidepressants and antipsychotics which did nothing for their FND, but gave them bad side effects. My symptoms came on after surgery too, so I think there's a link there. What I've found is helpful is getting behind someone else walking normally and focussing on their gait, and letting myself follow them. Takes a bit of practice, but seems effective.
Ok so this is getting a bit spooky coincidence now?
Sinemet dopamine control helped you and me with regaining physical coordinated movement and yet we have both been told that FND has a primarily psychological trigger?
Plus, I have had surgery in the past too and recently spotted an article in `New Scientist'. This article caught my eye because it went on about General Anaesthetics and how they have proved the brain `wakes up' after coming out of the enforced unconsciousness in an unexpected recovery mode.
Turns out the first brain function to come back online, the very first, is the problem solving part of the brain, not the basic coordination functions. This higher brain function is needed to help the body survive any immediate threat when consciousness is regained.
Now if that is true, then possibly FND is where the brain has been initially chemically `locked' into this Problem Solving Survival mode and continued to prioritise that over the basic functions, affecting the normal communication route to coordinate movement and other basic body functions?
Yes, it's very interesting. Your theory makes way more sense than some of the stuff I've been told. Luckily, though, I was able to see Prof Edwards recently and I told him I thought my problems began in 2011, after I had my first surgery. When I woke up from it, I was having a panic attack (they thought at first I was having a heart attack). I read an article that said no one really knows how anaesthesia works - to what extent the brain is asleep and whether the pain is sensed. Years later, I read about a woman who actually woke up during the same type of surgery I had, and said the pain was excruciating because they cauterize the fallopian tubes. When I read it, I couldn't stop crying, but didn't know why. So I think my brain did process the pain on some level and shifted into the mode you describe. Up to that point, I was a pretty laidback person, but since then my body over-reacts to everything - sound, light, odours, busyness, vibrations. It's pretty unbearable. Prof Edwards didn't comment but he wrote in my notes that I developed FND against a background of medical problems, and that 2 years of psychotherapy (under a different doctor) hadn't helped. Also, have you read Oliver Sacks' "A Leg to Stand On"? He was a famous neurologist who developed FND after an injury, but wouldn't tell his colleagues because he was afraid they would think he had a psychological problem!
Wow definitely on the same page then (pun intended!).
I have never seen Prof Edwards, but do know some who have and they were not overly convinced he was listening to them either? Think his own personal mission was originally involving Dystonia patients - so guess FND is a bit of a career change there.
No, have not read Oliver Sacks book, will ask for it for my birthday gift this year.
Though I have mentioned on other Posts that the book I found the most reassuring and enlightening about the relation between physical trauma and brain issues afterwards is:
Living with Physical Disability and Amputation ( Paperback – 1 Sept. 2009)
by Keren Fisher
Do not let the title put you off, it is full of fantastic insightful and helpful stuff, even down to some cutting edge Mindfulness techniques.
Thanks for the recommendation - I'm definitely going to get that book. After 5 years of little progress with doctors, I'm focusing on trying to rehab myself. I was impressed with Prof Edwards because his notes expressed exactly what I told him - unlike my previous doctor (a neuropsychiatrist) who twisted everything I said to fit his own agenda. Just wanted to say that it's such a relief to hear that someone else has the same symptoms and similar illness history as me. I don't feel like a freak anymore now!
Sorry, I was off for a while...Van604 - thanks very much for your feedback. I haven't met anyone who has had any luck with drugs too. Your excercise with following someone who walks normally seems a bit scary. When I try to walk slowly or follow someone I usually trip or lose balance. But it could be a matter of practice like you said.
Regarding general anaesthetics it's interesting indeed but complicated as well. There were complications during and after my surgery. Who knows if or how doctors' struggle during those complications affected my brain. It affected my body badly but still very little is known about our computer-brain. All I remember is that I was swearing when I woke up after operation. I don't know if it was due to dreams or pain or anything else.
I read some article( cannot provide link as it wasn't in english ) regarding predictive coding. There is neurologists' theory that error in this coding could be the cause for FND. E.g someone injures their leg, they undertake full orto rehab. At the same time they are focused too much on their body or have anxiety disorder which can cause an error in predictive coding. Once that happens, despite constant progress in their leg rehab, their brain still receives signals that the leg is painfull and injured. Simply saying brain is not updated correctly and after the rehab ,scan confirms that all is fine with the leg but patient can't move it like its paralised and they cannot walk anymore.
Honestly, I am tired of all the theories. I am frustrated because I I am struggling not only with fnd and other health issues but also with its' consequences. Its been almost 5 years since my fnd struggle began. Despite my constant efforts I am in a much worse place in terms of health state than I was 1 or 2 years ago. . I have been off work for 2 years and I am bankrupt with debts. The only people who help me is my mom and my brother. Its not if i like my struggle or not. If I dont manage to improve my health so that I could come back to full time work, I will become homeless. It wasnt my intention to pity on myself but its just my reality. The more I try the worse my situation is. Helplessness is not the nicest feeling.. All the best to you
Honestly, I hear you. In the last four years, since I was given this diagnosis, I've suffered more from doctors'/nurses'/paramedics' beliefs about whatever this disorder is, than from the disorder itself. Especially the crackpot Freudian belief of secondary gain, where they think our subconscious is making us erroneously believe we are sick, in order to gain something, like attention or benefits! They say they don't believe that any more, but they sure act like they do - I've been physically assaulted in the hospital because of it, as well as psychologically abused. I count myself lucky because, although I also lost my job, I was able to get disability. I would sue, but it's pointless - I already sued my company but had to give up because I was too sick to fight. I'm really sorry for your situation - can you not get disability?
I'm sorry to hear about your bad experiences. It's sad that health service workers who are supposed to provide support aren't trained/educated enough. Sometimes they can do so much harm instead. This condition existed 4000 years ago. Not only there is no cure but fnd sufferers are still treated like freaks. 1 year ago I visited private neurologist. When I started explaining my problem he said that I shouldn't waste money for the visit and I should had given it for 'people who really need help'and sent me to neurosis clinic. Really? Am I not the one who needs help? I borrowed money to come and see that idiot and he only humiliated me during the visit. In my country most doctors don't even know the term FND. They heard about conversion disorder which is neurosis according to icd10. So for them my symptoms are deemed to exist due to stress. Well, I 've had neurosis from the very childhood. I knew then what was anxiety, migraine, digestion problems, intensed heartbeat, feeling nervous. I cannot compare that symptoms to what I live with now. I dindnt have so many terrible symptoms so for me its not the same. Again, I am not trying to say that stress wasn't a trigger for fnd in my case. I 'm saying there where many reasons including permanent physical issues. Yeah, Freud had some crazy ideas....apart from accusing us of pretending and manipulating, he believed that cocaine could be cure for many mental and physical issues....
Disability? It's a bit complicated, I could try but it wouldn't change much anyway.
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