FND and Migraine question/ enquiry

[JB52]

My daughter suffers from Chrinic migraines and was also diagnosed with Functional Neurological Disorder.Are there any other members on her le who have the same and have they had any improvement with either or both health issues?

Thank you

[Gambit62]

I don't have a diagnosis of FND but I do notice that during migraines nerve impulses don't work properly - movements are much slower, balance is naff and I'm really clumsy and, having looked at FND the symptoms do fit with that. Personally though I think it is part of the migraine's effects on the nervous system ... and I have very frequent migraines. I also have a couple of auto-immune disorders that could explain the issues but wouldn't explain why they are much worse during a migraine.

[JB52 in reply to Gambit62]

Thank you for replying.

My daughter's FND diagnosis has not led to any treatment for it, so can't understand that at all. I think that doctors don't understand what to do as it's so complex. Her chronic migraines are still pretty bad though and her medication doesn't seem to help reduce the frequency of attacks.

Best of luck with your treatment. Hopefully some day soon researchers comes up with better treatments and a way of stopping migraine attacks.

[Gambit62 in reply to JB52]

As you say FND is not a particularly well understood condition and its causes are not understood. It is a diagnosis that is often mishandled because it is so difficult to explain exactly what is going on. It isn't necessarily something that is going to respond to specific treatments. For me physio helps - not in terms of continuous input but just in terms of figuring out different ways of doing things, and exercises that strengthening those functions that I find get particularly weak and wonky when things are bad. I've seen FND described as its not the hardware its the software that isn't working right so I try to tweak the 'software' where I can.

[Wolf23]

Hi, I suffer posterior circulation migraine which for me are chronic. My last attack which was a week ago I was hospitalised. My symptoms were severe that thought I was having a stroke,they said my migraine had elements of FND,they said the FND element was a symptom of the migraine. My migraine symptoms were,very sleepy,slurred vague speech,unable to lift right arm,tingling right face,balance problems and blurry vision. I saw a neurologist again,who told me my condition posterior circulation migraine is caused by blood vessel flow altering at back of head which they could see on ct scan using dye to see blood flow,they have prescribed me amitriptyline,statins and blood thinners to help with the condition.

[JB52 in reply to Wolf23]

Thank you for responding. Your description of your symptoms of a week ago, are almost the same as my daughter's from 3 years ago, except her one side ofvthe face dropped. She came away from hospital with her one eye unopened and it lasted for over 2 years. That was when FND was first diagnosed as they could not account for the symptoms.

FND, for me, is a vague term covering a lot of unexplained health issues. It seems that very few doctors understand it well . It is still under researched, it seems.

My daughter's GP told her he couldn't understand why her migraines were not under better control considering the medication she is on, so there must something else going on.

Has the prescribed medication of amitriptyline,statins and blood thinners helped at all with your migraines or is it still early days?

I hope so for your sake as chronic migraines are just awful things to live with. Best of luck.

[Wolf23]

Thanks for your reply,I've had chronic migraines like this for just over a year,Feb 2023 I had what the hospital told me was a migraine,and I've been having these for the last year about 1 or 2 per week,but a week ago it was so severe I was hospitalised for a few days. It was only while I was experiencing the symptoms they could see on the CT scan what was happening and I was fast tracked to a neurologist. Since I've taken the medication I felt the difference after a few days,but I've yet to see over time how I'll be. I do get triggers that will make my condition worse and that is lack of sleep and fatigue and stress. Before the medication I would feel tired and sluggish so I hope this will continue. They've also told me to exercise regularly. I'm just annoyed it's taken a severe attack before a diagnosis was found.my advice us to keep pushing for treatment.