IVIG migraine ADVICE!

Hello Everyone,

Five days ago I received my first treatment of IVIG. It lasted two days eight hours a day. About thirty hours after receiving my second infusion I woke up with by far the most painful headache I have ever felt. I was immediately hospitalized and after being there for ten hours nothing was found (including aseptic meningitis) and I was sent on my way with several medications and a minor headache. This morning (4 days after my second treatment)I was awaken with the same type of blinding headache. My family doctor is on vacation and my Hemotologist has been notified and no answer has been given. I am not sure which route to take and would greatly appreciate some advice.


Thank You,

It's a pretty common IVIG side effect. Unfortunately, there isn't much you can do. It will get better soon.

There are ways to avoid it, such as slowing the drip, staying well hydrated, and pre-meds.

Hi yes i had that same headache you had thought it was something serious. i actually could not move much. although when i first had ivig back in ireland it was grand no side effects o anything. Fast forward six years later when im living in london i had ivig and got a severe headache. I had the rudest nurse who told me i was eating too much chocolate and that was the cause of the headache. I transferred hospitals and they let me know that this is quite a normal reaction. What i dont understand is why i had such a bad side effect in london and when i first had it, it did not effect me. hope you are better now.

Sometimes the brand of IVIG makes a difference, or it could be the pre-meds, how fast the drip is given, and whether or not you are hydrated. All of those things make a difference.

My daughter has had IVIG three times. The first time, she had benadryl and tylenol before administration, but not during or after. We soon returned to the hospital for her severe headache and vomiting. After that, we asked for benadryl and tylenol, not only before, but during, and continued it for a day or so after. (This works only if you can stay home while zonked on benadryl.) Additionally, we were very careful to keep her well hydrated, before, during, and after. She never had the reaction again. We also believe a shot of decadron, given IM, at discharge after the IVIG, helped ward off the side effects on my daughter's second IVIG administration. On the third time, she was given dex pills for a couple days after, instead of the shot. This type headache should never be ignored. It can be simply a reaction that will pass, but the ER buzzwords for suspicion of intranial bleeding including things like, "Worst headache I've ever had," and "thunderclap headache." (I don't know of any increased risk, by the way, after IVIG, just the general increased risk in an ITP patient.) My daughter was a migraine sufferer. When she said this was the worst headache she'd ever had, I hurried with her to the ER just in case. Better safe than sorry. Hope you feel better soon.
Norma