FND and hemiplegic migraine July 2015

Hi

I've been unwell since May this year with migraines, weakness down right side, slow speech , difficulty getting words out, poor concentration, vision impairment ,dizziness , walking off to right side and extreme fatigue. I had the same thing may last year and played 4 months then improved to about 80% finding the right words and concentration never improved.

Now I've been given the diagnoses of FND as my MRI and CT scan was normal. I find this very hard to deal with but have been trying to put strategies in place to stay upbeat and deal with this. I have been told this is my diagnoses for now as things may change. It means I feel alone in working out how to deal with this. I was a very active person in my job and at home and its all changing. I'm going to go back to work next week and try to increase my hours each week.I let you know how I get on.

I want to hear about strategies people have found helpful and help manage this condition anything at all.

Thanks

Donna

5 Replies

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  • Has your GP thought about trying Amytryptiline? My Neurologist suggested giving it a go and fortunately It has made a enormous difference to my quality of life. It has dealt with the debilitating headaches and migraines. Have you tested your VItamin D levels? Again on routine bloods my GP added Vit D, it came back so low barely registered, I have been on Adcal since March and again my fatigue is no longer the issue was. I am not saying I could do a marathon but I can work full-time and still have little left to keep the house tidy. I still have word placement issues and balance problems but without the fatigue and headaches I can cope and make a joke of the the other rubbish. Like you I have good times and bad but that's the joy of FND

    I have had MRI and Lumber puncture but both were clear. I am lucky as my GP is sympathetic and I was diagnosed early. She still hasn't ruled out MS?

  • Thanks I have tried topamax and amytriptylline both affected my mood but I take propanolol which helped but not as much now. That's a good tip about the vit D.

    Thanks for your reply.

  • Good Morning All, Glad you joined us. I have been taking an anti-seizure med for 15 years that is probably the most helpful medication I take. At first it was Tegretol, then Topomax and now Primidone. I take sinemet a parkinsons drug also that was added several years ago by a movement Dr. when I was quite ill. Last year propanolol was added for the tremors, worked great, and they are much less often and debilitating now. Also, as a side note when I was hospitalized with this last fall, I had had a migraine for about a week, worst thing ever except for my spinal leak, pain was so bad. I was tried on Imitrex and it worked great. They gave me a script for home when they hit, but the drug has side effects. I tried Excedrin migraine when a friend suggested it and found that works the best. Sometimes won't take any of the edge off but usually will give some kind of relief. The fatigue, I have slept as much as 20 hours in a day when it is at its worst. I have found nothing to date that helps with that.

    Fatigue seems to be my biggest factor. Why this crazy thing cycles I don't know, why one day is better than the next I"m not sure. I do what I can when I can, and when I am too ill it is a down day to work at home and cope the best I can.

    Pray you can get back to work and Dr.s will find right drugs that might work for you. I think the most helpful thing we can do with this thing is have a positive attitude, and take one day at a time. At least I have found that works for me. God bless each of you today, pray this is a good day!!! Cathy :-)

  • Thanks for your reply. I take migramax 900mg aspirin when my headache is really bad and it is fab but unfortunately you cannot take it everyday so I keep it for the really bad days.

  • They gave me imitrex in the hospital and it really worked the first time. After that it always took the migraine but seemed to move it into my neck. Now I take Excedrim Migraine and it works pretty darn good if I catch it early enough, if not I end up with the imitrex. Hope this help for you some. Cathy :-)

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