I finished my 5 day loading dose of IVIG on Friday, today is Monday wee hours in the morning. I have had this awful headache since Saturday afternoon. I have migraines but this is not typical of those. I spoke with my neuro & he suggested increasing my fluid intake, 800mg of Motrin every 6hrs & rest. Anyone have any other suggestions, when I cough, sneeze, blow my nose or even walk my head just pounds! I am sure someone has gone through this before and has some suggestions of what may work.
Lots of water and tylenol before, during, and after. You need a gallon a day for this stuff.
Headache? Nausea? Yes I get those, but not so bad. That loading dose period was worse. Now for my 4 weekly, I get the staff to get me at least two big cups of coffee (not too strong) with nibbles while I am getting the IVIg and then food and drink as soon after as possible and that certainly stops the worst effects. A few times I have gone almost straight out to drive a few hundred km - no problem - just get the food first.
Some suggest LOTS to drink before - but I just don't like the idea of wandering the corridors with me connected to the stuff - call me chicken if you want!!! So I start the hydration with the IVIg.
I have never resorted to taking anything to reduce the effect (but as i have said - I don't consider I get a strong reaction).
I note that some people react better with slower infusion.
On the positive side - that loading dose series is almost certainly the absolute worst you will feel so it only gets better once you are over that (perhaps slowly - but better). Something to look forward to.
For that darn headache, I take hydrocone. When the headache goes, I stop the narcotics. Call your doctor and tell him you need something stronger. In the hospital during IVIg, I get morphine!
I am not prone to headaches but when I started my IVIG headaches were common. Now, I drink LOTS of water the night before. I sip water while the IV runs (2 hours X 2 days) then drink another quart or so right after. No more headachesI would rather make a few extra trips to the bathroom than have the headaches. I think hydrocodone etc is a bit much for headaches. Ask a medical professional the definition of "hydrating", it means drinking LOTS of water.
I drink a quart of water before my infusion. I drink another quart during my infusion, then another quart when I get home. If I do get a headache it is really mild. Drinking a cup of coffee makes it go away. Yes, I go to the bathroom a lot, but those headaches are awful. I also drink 2-3 quarts the day before. When I was hospitalized and was getting infusions, even morphine didn't help that headache. Since I started doing this I don't need pre meds or get the headches.
I hydrated before, during and after the infusions. They premedicated me with one Benadryl and 650mg Tylenol. Neuro just told me to try 2 gallons of water a day instead of the 1 I was already drinking, not including the 2 cans of Pepsi a day for my caffeine fix. I hope this headache subsides soon! The 800mg Motrin every 6hrs can’t be great on my stomach, and it barely takes the edge off. I did find that gel ice packs help a little when placed over my eyes and at the base of my skull. Thanks for everyone’s input, slowing down the infusion rate sounds like what I will be asking for with the next round!
Are you drinking diet or regular pepsi? Both are toxic for someone with CIDP. My symptoms have improved dramatically since I stopped eating processed foods that are full of toxins and GMO's. I get my both infusions in one day instead of doing it over 2 days. Since I am there for 6 hours I take my own healthy food and stay away from hospital food. I buy organic when I can find it and afford it. When I started drinking the water and bringing my own healthy food I stopped getting the headaches. I can't stress enough how changing my diet has helped all of my symptoms. Others may not get the same results, but at this point what do you have to lose, except maybe a debilitating headache.