Migraine sensory aura - HELP!

[Andyroo66]

Hi

Ive had neurological problems on and off for 20 years- started with leg cramps, pains in hands and feet 20 years ago- this developed into bilateral sensory disturbances mainly in my legs, when wearing trousers my legs felt damp!

I took supplements (not meds) and rested and largely recovered although the tingling legs and tiredness remained.

MRI brain and spine OK , bloods OK

Dr Mary Reilly at QMC London in 2000 suggested I had a small sensory nerve fibre neuropathy and I might consider Gabapentin if continued with issues, I didnt go that route. During this period I developed some very mild RLS in the evenings but it never disrupted sleep.

In the meantime a Brakesper Hospital they did some tests and suggsted I could have reactivating Epstein Barr Virus antibodies (I have seen some some stuff on the web that suggests EBV can latch onto the vagus nerve causing neurological problems??)

In 2013 I got sick again, took SSRI's - these reacted badly and I developed rebound RLS and body jerks when I stopped, I then saw a local neurologist who advised migraine aura and put me on amitriptyline.

This largely worked (good sleep!) although had to stop as Cardiologist advised I have congenital Long QTC syndrome and amitriptyline can prolong QT

So recently following a bout of flu before Christmas , still off meds I developed all this symptoms with avengance, much more pronounced than I have ever had before - nerve surges through my body, burning sensations in the legs and back, jerking/RLS , disrupted sleep - always releived by getting up and moving around), its worse every other nite for some reason

My nuero now tells me now he suspects I have migraine sensory aura, Ive started some gabapentin only a couple of nites ago

It seems as Im getting older (now 52) this condition is just getting worse!!

Anyone else out there with these problems?

Any comments/suggestions most welcome as Im at my wits end!!

[Kelli0905]

Hello there, I’m so sorry you are dealing with this! I have migraine sensory aura but no RLS...I get bad speech arrest, numbing in my arms, hands, face and tounge. And the vision that is disturbed. It mimics a stroke. I’ve been in topomax and all kinds of other triptans with no relief. I do not get head pain anymore but I used to. They have changed a bit. What’s weird is the neuro did not suggest low dose aspirin but I saw a few people talk about how it helps aura on this site. I tried it and take one every other day and haven’t had an aura in a month!!! Knock on wood!! Maybe it’s worth a try for you. Hugs!!!

[Andyroo66 in reply to Kelli0905]

Cheers. How much aspirin do you take?

[Kelli0905 in reply to Andyroo66]

I’ve started at 81 mg every other day. If they start to come back I’ll try every day. You just have to be careful with stomach issues because it can promote stomach bleeding. I would ask your pharmacist if it would interact with any other meds you’re on. Let me know if you have any success with it. Good luck

[ticc1212]

Hi, I just started gabapentin two days ago 100 mg daily. Does it work for migraines?

[Andyroo66 in reply to ticc1212]

Apparently so .My neuro suggested 1800mg per day I think. Not sure I like the effects of this drug so far but it helps with sleep. On 200mg at the moment