So, how do I beat an IVIG headache that my usual large doses of ibuprofen (800mg at a time) won't touch?

Just finished my last infusion! Good thing, too, because they used the very last available vein, which they found by process of elimination.

Abby

Drink about a gallon a day for the next 2-3 days. Lie quietly in a darkened room. Call your doctor and request a narcotic medication, and perhaps something for nausea (my headaches always morphed into nausea as well.)

If it becomes the worst headache of your life, call the on-call doctor or go to ER.

Sorry you're going through this. Next time have them run the IVIG slower.

Thank you. I love the practical advice you can get here. I took a Relpax (triptan migraine drug) and it worked well. I feel better, but not out of the woods. I would have gone to the ER if this had gotten bad. I was worried about aseptic meningitis.

My IVIG ran at 100 the whole five days (starting at 50 for the first half hour). That's already really slow, right?

I think I remember something about IVIG messing up electrolytes because of a fluid imbalance, but I'm confused. Does that mean I should not drink too much? Or drink gatorade? Or drink water, but eat a lot of salty things plus high-potassium foods? I think I will go with bananas and potato chips until someone convinces me otherwise (I love potato chips...).

I ate candy all week, mostly Jordan almonds. The real reason was because I like them, but the other reason is that the protein in the almonds is probably a good way to balance out all that sugar. Or something.

Abby

Abby- yep. Jus as 4eyes said... Dark room is key and drinking a lot of water/ gatorade..anything to keep you hydrated. Mixing tylenol and ibuprofen along with 1 benedryl can help.

When I had aspectic meningitis....i wouldnt even consider it a headache it was horrible. Couldnt open my eyes without a wrenching pain. Morphine hardly took the edge off. Please keep hydrated so that doesnt happen to you.

Glad you are feeling better though. 100 is semi slow...mine gets up to 160 usually by the end of it but goes up by 50's through the infusion. I am bigger than you though, and probably can handle it a little faster.

Drinking too much...shouldnt be in your vocab when doing IVIG. Drinking enough is key to feeling better. Gatorade is a good thing...water is good too. If you get bored of water go w gatorade. Im not sure about high potassium foods...id stay away from it actually just from previous problems with potassium and as IVIG thickens our blood that can be not so good..but im no doctor so dont take that to heart.

I eat candy 24/7:P.

But im doing my 3rd day of IVIG right now, and this month makes 1 year ive been doing it, woooohooo. Hopefully with the stem cell trial coming up, I wont be doing it that much longer.


Hope the effects of the ivig will be kicking in soon for you.


-Tyson

I've been doing IVIG monthly for over 10 years and I do best at 100 ml/hr. Benadryl is also an excellent suggestion. I use it every evening after my infusion.

Don't try to analyze the electrolyte/fluid balance. You are screwed up because of IVIG, plain and simple. Hydration flushes out the screwy bits...just go with it. : ) A nutritious diet never hurts anything either.

Hope you're feeling better soon.

Hey, please tell me about the benadryl. I haven't been using it because I didn't have anything that seemed like an allergic reaction. Would benadryl help prevent a headache?

The Relpax I took last night was wonderful. It took away the headache, and I slept really well all night, and no headache this morning. Relpax is a triptan migraine drug (there a lots of them. Here's Wikipedia's list: "sumatriptan (Imitrex, Imigran, Cinie, Illument, Migriptan), rizatriptan (Maxalt), naratriptan (Amerge, Naramig), zolmitriptan (Zomig), eletriptan (Relpax), almotriptan (Axert, Almogran), frovatriptan (Frova, Migard, Frovamig), and avitriptan (BMS-180,048).") I took it even though the headache didn't feel like my typical migraine.

I wonder if other IVIG patients who are prone to headaches would benefit from this drug.

Abby

Hey Stella!
I get the headache everytime too. Mine is run at the same rate as yours too... But they added hydration to my infusions, so I also get a bag of iv fluids each day right along with the ivig. It helps aLOT... Also the meds actually thicken ur blood that's y hydrating before as well as chugging water for the week after is so important. Also the water after helps flush the antibodies out. I still get the headache but it's nothing like it was before the iv fluids. I also take benedryl every 4-6 hrs from the morning I start the infusion until my side effects start easing...HTH and finds u strong and well!
Much love
Jess

I get in a lot of water the 3 days before the infusions start and also liquid benedryl and solumedrol is included with the IVIG and a bag of fluid. Also a slow drip not over 150 over a 4 hour period with 60 mg of solution and I still get a headache.

I have a 3 day infusion this coming week.

Gabriella

i do my ivig twice a month at 400 ml/hr and they hit me with 50 mg of benedryl in my iv before i start and i nap thru most of the treatment and the headache doesnt get very bad. ive done it without the benedryl and its pretty much the worst.