My 18 year old daughter was diagnosed with FND about 2 weeks ago after sudden speech and gait problems.
She has been taking ADHD medication for 5 months and having trouble finding a drug/dose that suits her.
At one point she was told to stop her ADHD meds as it may have been causing her “stroke-like” symptoms.
Has anyone had experience with FND and ADHD? If so, does medication help or not?
Thank you!
hi, no ADHD but medication. I took Gabapentin low dose for 5 days ( for nerve pain) and then developed problems with walking, talking and thinking and spent three days on a stroke ward. No stroke found but 19 months later diagnosed with FND caused by adverse reaction to medication. So there is the possibility that the medication may be the cause and it’s good your doctor is looking into this. Good luck in the future. Kevin
That’s really interesting. Thank you for your comment. Best wishes to you.
kev60, it's rotten that it was adverse reactions to medications that caused the symptoms of FND for you. I wonder if you have had the chance to contact the Akathesia (sp??) alliance about this since people with that condition (which is also caused by taking/withdrawing from meds) consider that FND is a misdiagnosis for them. Jill (the founder of the Akathesia Alliance) is lovely and is doing all she can to educate doctors - especially those involved with FND - so that iatrogenic harm can be avoided.
I have no doubt my FND was caused by the covid vaccine hence medications can cause irreversible sumptoms that can last for years after a medication has stopped or become permanent. Many drugs have been taken off market because of this. Something like a stimulant could certainly cause this. There are products that aim to help like everyday dose which is a supplement drink. It might be wort finding a more natural approach for sure.
Thanks for your comment - we do think the adhd meds might have contributed to the FND. I’m not sure that anyone from the medical profession will admit that though! Best wishes.
Makes me angry vaccine injured are shoved under the FND umbrella. The way functional was explained to me was there is no physical/organic cause. 1000's are campaigning to get covid vaccine damage recognised. I reckon it's going to be years before they admit it.
According to the article below long covid itself may be a neurological illness, so it is not surprising that the vaccine can cause neuro problems .. whether they are a variant of FND is beyond me, but an admission of its injurious effect would be welcome to the many sufferers who must feel extremely resentful.
Hello, I don’t know if the relationship is cause and effect, but about a month after I started taking a stimulant adhd med, I was under a lot stress, and I developed similar symptoms. Almost like my sympathetic system was on all the time. I had diplopia, vocal cord dysfunction, tremors, I could write, I couldn’t walk, pseudo seizures. I am sooooo much better now through intensive physical therapy, speech therapy, occupational therapy, mental health therapy, and taking 4 psychotropics meds. I did get off the adhd med right away.
Thank you so much for your reply - it is very interesting to hear that you experienced this too. My daughter has had several health reactions to her ADHD meds and has tried three types in 5 months. She’s experienced Raynaud’s phenomenon, depression and a dermatitis-type condition. She was told she was highly sensitive to stimulant meds. She never wants to take them again.
It's not uncommon for the FND to come on suddenly like this, mine started with stroke like symptoms and a few weeks later a bunch of severe symptom arrived within 3 days. ADHD medication is different for everyone and there are alternatives that are not stimulants, they're just not as fast acting so not commonly prescribed. It can take a while to find the correct meds and dose even when you are "normal" .I have a friend with FND who was diagnosed with ADHD and autism some years after, she has had less seizures and has been seizure free for months as a result of starting ADHD medication. I would recommend she looks into the Facebook group ADHD for smart as women and know that the menstrual cycle can affect ADHD medication effectiveness and FND. I hope your daughter finds relief soon.
As an ADHD coming into full suspician that ADHD burnout might be a thing and it might be similar to ASD burnout. It is NOT the same as neurotypical burnout as it can last for days, months, or even years and can really do a number on those affected by ADHD and/or ASD.
Back to the subject, I have not taken meds for ADHD for a very long time. They did nothing for me whatsoever. I was better helped when I found myself eating close to a balanced diet and working a mildly physically demanding job (I was an active lady when I was able to lift more that 20lbs.) That's not to say what worked for me should work for your daughter. I can only offer this little nugget to think about: they never really studied how these medications affect the female brain.
I tried all the different meds for ADHD - I did well on Methylphenidate (Concerta) initially but it wasn’t effective enough and then when the doses were increased I found myself in deadly anxious and tearful and blue without reason. I switched to Elvanse (Lisdexamfetamine ) and it has been sooo much better. My only issue being I metabolise it v fast so even on max dose it wore off quickly so now I take 60mg but top up with amfexa. I feel so much better on it and more regulated emotionally. I wonder how much it helps my exec function at times and the answer is it does but it isn’t a magic pill that makes me use it to focus on the right things so I have to be accountable to being disciplined on that. If I find something dull of course I’ll focus on something more interesting and need to force myself to get the right things done. I still wonder if it is working at time and then there are days my routine is upset and I forget to take them and I realise I have kept walking into rooms forgetting why I went into them and forgotten the item I went to get or I’ve driven to the wrong place because I was thinking about something else, made food and forgotten to eat it, left the coffee on the side etc etc all more than normal and the. I realise that is where the meds are helping day to day! When I researched Elvanse and adhd meds (with full on hyper focus hahaha) I also researched for hours and hours and days and days everything I Could find on the connection between ADHD and FND (and also CPTSD) and as part of that research found evidence in journals that it was considered that Elvanse was likely to reduce FND symptoms and I realised this had been true for me and had never made a connection with that - whether that’s as a result of coping with life better, reduced overwhelm and focus and therefore lessened anxiety who knows but the frequency of tremors/motor issues and PNES has reduced for sure. I’ve then been on forums for ADHD seeking out other FND people who have also reported the same. (Not many as I’ve tried not to end up losing hrs of my life on forums instead of working or sleeping or getting stuff done ;-).
That being said it is obvious that everyone responds diff to meds differently and to the dosing differently and has diff feelings about taking meds. I took gabapentin and (the other similar medication whose name I I can’t remember) but I stopped because I have issues with accepting the assoc weight gain.
I am lucky that FND symptoms come in flare up periods and then I am fine for weeks/months. They can be just tremors/jerks or they can progress to speech issues/paralysis/ jaw locking and then to non epileptic seizures. For me, I know it is critical to find a distraction, to go somewhere calm and take time out at the first signs of tremors to try and knock the flare on the head. I’ll focus immediately on things to trick my brain out of a hand /arm tremor or walking issue and sometimes it works. I try and stay super super present. I force myself to talk about something unconnected that means it is difficult for me to give the tremor conscious attention and that helps. If I have a tremors in a hand I will open and close that hand and talk about a different subject or something and it stops it and things like that can help stop the progression into jerking and then seizing. I am not always successful. Sometimes the environment and the anxiety of being in public and worrying about the tremors or paralysis starting are, much like a panic attack a self fulfilling prophecy and it all goes to shit and I’m either only able to speak gobbledygook or make weird sounds and pray someone might work out to ask me yes or no questions and ask me to tap their hand with a thumb to indicate my needs or consents. I also know once the tremors and jerking starts it is almost like my brain finds some sort of comfort in the rhythm or movement, like the dissociative part is needed - even if I am finding it painful or uncomfortable and desperate to make it stop as it is also exhausting not to mention the humiliation I feel ? (that sounds odd I know but I think there can be a brain overwhelm and the seizure is it’s way of forcing you to succumb to having to just stop and make you check out in order for it to cope and make you tired so you sleep/rest and it can try and reset? ) Weird, I can’t explain it but I know it is a conscious effort in seizure when I am conscious to try and calm my body to come out of it and to try and fall into sleep as I am usually improved once I’ve slept and kind of reset. Sometimes though the walking and tremors/dystonia are embedded and last days and it is difficult to work out how to break the pattern and make my brain remember to do what it knows how to do if I will just somehow not think too hard about it. On paralysis the more I try to move something the more paralysed I am? I can’t figure out how to sit or stand or move my leg forward? And then a leg/ knee will buckle and kind of spasm behind me as if it has no strength but yet I walk up steps and down steps and uphills and downhills easiest when I have FMD issues or I can sprint on a treadmill but not walk in a straight line and will wobble jerk away trying to just walk normally. I’ve noticed via reading peoples experiences that people who do/have done a lot of exercise seem to have the least progressive/less chronic phases, I don’t know that this is fact or coincidence in my reading but I certainly believe that this is true for me. I am a personal trainer and have had FND for 30 years and as I exercise v regularly and am fit and strong. I think that the neuro feedback of exercise helps enormously - watching myself move in the mirror or without a mirror too and focussing on correct movement patterns daily has to help. Also it means that when I experience weakness or tremors I know that despite what my symptoms are that it is not because I am weak or poor physical condition and so can reassure myself that it is a connection/cor ordination issue - a messaging or signal disruption that needs a CTRL ALT DELETE type reset ie I need to close some of my browser pages down and reboot. That means focussing hard on the body parts that do work, watching the movement on one side that works in a mirror to help the other side that isn’t, doing a movement that I can with the limbs that are affected to distract that limb from its issues and also to sleep.
Well in true ADHD style this was long! Sorry and I’ve no idea of it is helpful.
I see a psychiatrist and a therapist and have done for a long time but it hasn’t stopped the FND. I’m on a waitlist for ST George’s FND neuro but will prob get knocked back as the list is huge and I think compared to many I’m lucky in that most the time I am ok and in all likelyhood I could get an appt and present with no current symptoms.
Thank you so much - I think what you’ve said is incredibly helpful and interesting.
My daughter has since returned to ballet school and has just finished week 3. She is struggling to pace herself as their expectations are higher that she can manage. This should settle, but it hasn’t been easy. She caught a cold last week and spent 3 days in bed, totally wiped out. Ballet is and always has been unaffected by FND
She is currently taking Medikinet short release which is ok but not perfect. She didn’t get on well at all with Elvanse (the opposite to you). It didn’t help her focus, even at 60mg - she just got more and more tearful and anxious, so she came off that about 3 weeks before she was suddenly rushed to hospital and diagnosed with FND, so it’s so interesting that Elvanse is supposed to help with FND symptoms!
I will re-read your comment and process a bit more of the info. Thanks again!
Yep we all respond so differently to meds. Funnily enough I was also a serious ballet dancer and had wanted to do it professionally. It doesn’t surprise me it doesn’t happen dancing - her mind will be focussed on the steps the music the rhythm, her alignment turnout and posture so she is essentially distracted and her brain is taken up with a skill she can be absorbed in and isn’t worrying over in that way. Perfectionism and it’s assoc anxiety though comes with ballet dancers though I’d say and will likely prob also have played a part in the unconscious stress that is causing the ironic disconnect from brain to body. It seems ironic that like your daughter I am someone who is so invested in being physically able - via dance/exercise and this issue totally undermines that. Also the fact that paying your body too much attention exacerbated the symptoms and yet it is seen as a dissociative disorder. I’m sorry you are both going through it. I ca only say she should try to learn to accept hat she will have occasional blips where her body doesn’t play ball and decide to not allow it to cause fear or catastrophic thinking as it isn’t going to kill her. It is just bloody inconvenient and yes can feel embarrassing. I have learnt my best way forward is this approach - not to live in fear of the flare ups but to decide that if or when they come up to take them as a sign that I am not recognising I’m overwhelmed or more stressed/tired than I thought and so say “ah ok tremor mates, point made - right time to a) get you sorted by making you all calm down and get myself doing something absorbing and unrelated that takes my focus away from it, b) time to self care/spoil myself - sleep, eat something good, watch something, have some fun with friends, do the opposite action - ie if I’m wobbling just start dancing or skipping or whatever I can do that is so at odds with what is happening. It helps. Because as you say my symptoms don’t happen WHILST I’m dancing or WHILST I’m running- they happen when I stop , when my brain has time to ruminate or over think etc and often when I’m at rest . Good luck and wish you both well. But try try to make her realise the best thing to do is not dwell on it and not be defined by it. There are Olympic skaters and pro triathletes etc out there with FND. It’s a weird condition of contradictions much like ADHD is
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