Ocular migraines post Covid triggered GBS

Posted by bonnie95mc @bonnie95mc, Mar 5, 2023

I had a flu shot then got Covid a week later. The combination triggered Guillain Barre disease. I have mostly recovered from it- it has been 3 months- but now have been getting an ocular migraine every few weeks. Has anyone else experienced ocular migraines from Covid/other?

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Terrez | @terrez | Jun 27 11:38am

That is so awful. I’m so sorry that happened to you. I was just replying to another individual who has suffered with GBS for 11 years. I replied to her story about someone. I know that also got a flu vaccine the company he worked for supplied for the employees and he ended up in a facility for many many months. Even after being able to come home a year later, he was not able to walk well or open and close his hands. This is a big strong man that this happened to so it can happen to anyone. I pray you find help soon and recover completely. I am a very sensitive individual and don’t do flu vaccines after I had a very bad reaction to one five or six years ago. It caused a rash all over my face and neck was similar to shingles and I thought at the time that that was so stupid to get. I am definitely anti-vaccine needless to say.
I have autoimmune problems, psoriatic, arthritis, and AS and just feel that I am more susceptible in my condition. I don’t do any vaccines or infusions as I know GBS is very real. It changes your life in a minute. Good luck to you, prayers that you find peace and good health soon.

bmekdeci | @bmekdeci | Jun 28 3:48pm

I had ME/CFS before I got Long Covid. And, yes, I have had ocular migraines which are scary the first time it happens. Mine only last 10 minutes so so. Better than the horrible 3-day migraines I had when I first got ME/CFS. They were probably one of my worse symptoms over the years. Then, one day, they just disappeared. I think both kinds of migraines are tied to my stomach.

amwood | @amwood | Jun 28 5:00pm

Yup! I've had two ocular migraines. Since March '25. Mine have lasted about 30 minutes each. It's quite a light show going on in my eye. I haven't been diagnosed with GBS. I have the erratic heart rate, lung capacity issues, swelling feet and exhaustion symptoms..

val64 | @val64 | 6 days ago

I had had a couple of these in my 60 years before I started a clinical trial drug for cancer last year. Then I started having them every day, often more than one.

I'm off that drug now, but I still sometimes get an ocular migraine when I forget to take my full dose of magnesium. So you might try taking magnesium. I take a 125 mg pill of magnesium citrate twice a day, for a total of 250 mg per day.