Are migraines a side effect of GBS?

Kevin has cidp and gets them regularly. He also gets another type of migrane that is attributed to his ivig.
Dawn Kevies mom

Many people think that a really bad headache is a migraine. That is not always the case. Migraines are specific to nerves, circulation and inflammation. They cause visions disturbances, dizziness, nausea, light sensitivity, noise sensitivity and motion sensitivity.
If your doctor has not diagnosed them as “true” migraines, you would need to speak with a Neurologist for that diagnosis.
My son Nate has had severe headaches for this past year, 1 1/2 yrs after being diagnosed with GBS.
We thought they were also migraines since they run in my family. Turns out, they are not migraines. They are a result of nerve damage in Nate’s neck.
He has been working with his neurologist and a pain clinic doctor for the past year or so, first to diagnose the problem, then figure out how to treat it.
They have told us that these headaches are not true migraines and do not react to migraines inhibitors like Imitrex. We have tried them.
The type of headaches that come with GBS are from nerve damage in your neck from GBS.
Nate has a problem with his nerves that come out of the c 3 and c 2 vertebraes. It causes severe pain the left side of his head.
The Pain Center has tried nerve blocks but it has not worked as of yet.
Perhaps your doctors can help you but you need to get the problem diagnosed first if you have not done so.

I have constant headache since the start of GBS. For many months, I had extreme dizziness upon any movement (and I still get dizzy fairly often). Even lying in bed and turning my head caused dizziness and the room seemed to spin. I have an ongoing problem with vision disturbances. I see an aura in my vision every day or so, sometimes several times a day. I also see small round balls of light at my left peripheral vision. The headaches are like a very stuffy headcold, just a constant pain, sometimes throbbing or severe pain on the left side too.

What helps is limiting my salt intake, and all chemical and preservatives. I have to avoid allergens like perfume and dust. I drink several cups of coffee daily now, because it acts as a diuretic and eliminates some of the excess fluid in my system. The headaches lessen when I do this.

I’m hoping to get the doctor to listen to me about all this in a few weeks time, when I can return for refills on my asthma meds. Maybe he will take it all more seriously, just in case it might lead to a stroke. I don’t know; so far it’s been difficult to get anywhere with the medical people. They just don’t realize what this condition is like for us, and how we suffer.

But anyway, we have to keep going, and I guess we have to accept what we can’t change. I hope things will improve for you, and that you find answers for your needs. God Bless!

–Donna

I have CIDP. When I was first diagnosed, I was getting migraines all the time.
Aw-they were awful. I would get nauseas and couldn’t take any light at all, having to stay in my darkened bedroom. Just going outdoors in the sun sometime would bring them on. I was super light sensitive.
But, my neurologist is part of a team of about 10 neurologists in one office, called “The Neurology Center”. Each neurologist specializes in a different problem. Mine specializes in muscular-neurology and rare diseases. But one of them specializes in migraines, and the office is advanced, in that they often do studies and experiments.
They were experimenting with using anti-arthritic meds, (drugs that help people with arthritis), for migraines. One of the drugs that was working well, was Indocin.
So, well over three years ago, my doctor put me on Indocin 50 mg three times daily. Since then, I have not had one migraine. I swear by that drug. I still take it to this day. The pharmacist always gives me a precautionary flier every time I get my monthly refill of the drug, as Indocin
is an NSAID drug, which the side-effects can bring on a stroke or other bad things.
I don’t care–I am living migraine-free. And I can even take some sun now.
I hope it might work on others here, that get those nasty migraines.
KEDASO

Hey! You know what? now that you mention it, I have experienced this too! I didnt make the connection, but it could be there. About a year and a half after my recovery from gbs, I started getting weird headaches that presented with stroke like symptoms. One side of my mouth would droop and I would get tingling/numbness in my hands, feet and around my rib cage. One day I actually FELL in the shower and was unable to articulate words when I called for help. Of COURSE I was hospitalized and they said it was a “hemoplegic migraine” which “may or may not be a complication from the gbs” I was in the hospital for 4 days. it was crappy. I was prescribed Verapamil and Topomax. I took these medications for 3-4 months and have never had it happen again. SO WEIRD. My neurologist wants to explore this more and do some sort of steroid drip test thing to get a better idea of what happened… but tests are expensive, and it seems like the topomax/verapamil regemine kicked it. Have you talked to your Neurologist? this would probably be the best place to start. I know imitrex is REALLY expensive and didnt work AT all for me (at 80.00 a dose, this was frustrating) – so maybe he may have some alternative ideas/medications that can help you with this. Headaches are the worst. I am sorry to hear that you are experiencing this.