Bd & Fibromyalgia: Hi guys just to follow on... - Behçet's UK

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Bd & Fibromyalgia

nearysandra profile image
9 Replies

Hi guys just to follow on from the lovely joint BD & Fibromyalgia I am interested to know if anyone suffers or has suffered with migraines I have for a while but lately before a bad migrain I get numbness in my hand and face any thoughts or shout outs greatly appreciated xxx

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nearysandra profile image
nearysandra
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9 Replies
Blessed2be profile image
Blessed2be

I experience all the same I just started taking reload it works awesome for me but you can't take it more than a few tunes a week so sometimes I have to take a extra Vicodin in between

Blessed2be profile image
Blessed2be in reply to Blessed2be

Reload!thats the name not reload sorry phone auto corrected me

Pvancourt profile image
Pvancourt in reply to Blessed2be

May I ask what reload is? I've never heard of it.

Blessed2be profile image
Blessed2be in reply to Pvancourt

Relpax

kdgh profile image
kdgh

Hi, yes...so weird but my primary symptoms that I'm trying to address are the same...first was Behcet's, then I developed Fibromyalgia and chronic migraines - like Behcet's wasn't bad enough, right?!? And I've had numbness/weakness off and on for a few years in my whole right side (face, arm/hand, leg/foot) and neurologists can't figure it out, and either classify as "complex migraine" (but it doesn't quite fit because it lasts for months) or probable Neuro BD (but they are all cautious about making sure that is not a definitive diagnosis because obviously it's not something we want, but I don't mind at this point, I would just like to know why it happens.)

So I feel your pain!!! ;-(

AmandaMoseley profile image
AmandaMoseley

Mt daughter has this - indeed she as slowly using the use of her right side - and every neurologist we saw said it was nothing to do with her Behects - and how it could be psychological -right up until we saw the lovely Desmond Kidd in London who said it was a Hemiplegic Behcets migraine and started her on Pizotifen (he said there were others if that didn't work) She got her right side back within days!

Jaxxi profile image
Jaxxi

I had it a lot in my 40s and early 50s - called it the 'numb and stumblies'. It has worn off a bit in the past few years as I have fewer migraines now. This may be due to hormones settling (my migraines were connected with my menstrual cycle). Or perhaps its because my life is less stressful since I stopped work. I had an MRI scan just in case of NeuroBD, but nothing unusual showed up.

nearysandra profile image
nearysandra

Thanx guys appreciate all your comments xxx

Lil46 profile image
Lil46

Hi, I get really bad headaches, that are like migraines because they occur over my left eye, cause nausea and visual disturbances. I thought they happened at certain times of the month because I am of a certain age (I am suspecting menopause too)!! Then I thought it might be when I drank red wine. However, it seems they are not related to anything I do, perhaps what I am eating. I treat them with high dose of aspirin which helps a bit - it means I can function.

So I have recently tried to reduce sugar, diary and bread (as little wheat as possible in fact) and this week I made fish pie, which has cream, milk and cheese.

Full on debilitating headache the next day!

I think there is more to the diet side of Behcets, but I can't find much useful info anywhere.

Anyone else finding similar things?

L.

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