FND and hemiplegic migraine July 2015

[donnaw23]

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

[PennyC]

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?

[donnaw23 in reply to PennyC]

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.

[cathys20]

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

[donnaw23]

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.

[cathys20]

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

[Mama_Baker]

So this is the most rescent thred online i have found. I am in a catch 22 situation.

Im 27 now. When i was 14 i had my first hemiplegic episode. I thought i was going blind at school so went to the office and rang my mum amd told her i needed an optometrist... in 15 minutes i was in an ambulance with suspected stroke. My face drooped , speech slurred , body paralyzed down the right side... clear mri , clear bloods, clear ct. No diagnosisbut that i MIGHT have had a TIA . Then for the next 4 years as i went thru highschool randomly i would get server headachs with occational numbing. I have always been a busy person. I crave being socially active. I was on council and held 4 jobs thru year 11 and 12. As my episodes became apart of my life neurologists trialed many paths propananol, deralin, diet, gluten, still episodes. Due to the nature of the paralysis it would tinggle on and off in different places before hitting... first my toes then travel up thru EVERY part of my right side teeth and all. Even breast. From start to finish about 45min-1hr. Due to the sudden onset and duration followed by a debilitating migraine i wasnt allowed most other medication as they could have the adverse effect and cause me to be permanently paralyzed or have brain damage. My cure. . . To self manage and work out on my own what my triggers were, the main 3 were excerise- to much physical strain brought them on- 1 week and the gym 2 weeks migraine recovery... there went my body... stress. To much work and things going on. Had me bed ridden especially around menstration. 3 irregular balance of caffine. Too much migrain... too little migraine. Freeze dried coffee could guarantee 24grs later i was loosing speech and finding a dark whole to sit in. By the time i was 21 i had my first child and the headachs seemed to go away, leaving us to believe the new hormones my body was putting out have possibly countered the serverity of my headachs... unfortunately not for long. At 23 i was finally diagnosed with Hemipligia migraines. But it was just a title i could finally give these episode i had been suffering for nearly 10 years which caused me to loose my passion for managment and employment all together as it was work and suffer miss out on being a mother - or manage these issues as best i can while being a mother. In 2014 i had my 2nd child and i was 25. No matter what i tried in self managing to cope. Loose weight migraine, play with kids and ve an awesome parent migraine , balancing has been hectic but im thankful i have a massivly supportive husband.

Now 2017. I have been diagnosed with PCOS, insulin resistance and how awesome. I have been having full blown seizures and fits for the last 3 weeks, i can no longer walk properly , nor speak consistantly to people - i have anxiety attacks leaving me fitting if i go out in public.... the drs SUGGESTION after being sent home from the ED with 3 asprin and a maxalon after 2 hrs. Is possible FND due to the sudden stressors of my headachs, PCOS, parenting and other life tasks i try to enjoy. This has been going on 3 weeks now. Since the dr said that. Im still waiting for the neurologist appointment in 5 days and in the mean time my entire life has been turned upsidedown. Im a positive person. I really am peeved at my circumstance - i mean tonight i wanted to admit my self to mental health as i for the first time EVER had depression hit me like a freight train then paralyzed with fear because my freakin washing line moved at the same time as my son ran around the corner looking for me. Suddenly im having a fit in my back yard...

Ct clear. Yet to have a new mri of the dozen normal ones ive had. Vit D is good, magnesium is good, b6 and b12 are fine . Im not pregnant (even tho being pregnant would give me a fit) organ and brain function is normal appart from not being able to process information AT ALL - emotion come out in uncontrollable movements, jerking, tics and fits. If i try and remember things on the spot even my kids fav food... nothing. Litterally. Shit sucks right now. The two things i can do tho. Type . And be positive.

After all i have 2 kids and an amazing husband to try and live for. God has to kno what hes doing. To not have hope in that. I think i would be a right mess... i hope someone reading this. May not feel alone.

I am here. Doing all i can do now. Type and be positive. Holding onto hope.

Lisa.

[Karolina87 in reply to Mama_Baker]

Hi Lisa. I understand you completely. I've had migraines since I was 8 years old. I had a very very painful one. And the next day my right side was weak. I Got FND diagnosis.I've also had tics, tremors, extream fatigue. If I am able to go out I have to use sunglasses and 🎧. The point is I think they didn't know about hemiplegic migraine.

But it may be both HM and FND.

So I totally understand you. I am a mom too. I live in Spain. Here they see this as "something in your head" go to the psychiatrist, go home... I once went to the ER, having the right side of my body paralyzed, the migraine, the mind fog, the confusion, and the Dr. Told me,. To stop walking funny, to remove my sunglasses and earplugs de and to stop pretending being sick.

So, this thing is hard to deal with, I am going to see a neurologist who studied in London and knows about FND, here is called Conversion disorder always. And suggest her that it could be also HM. I don't know. Send you blessings