So, I cheated a little bit and didn’t post this update page on the day of my infusion, which was 3 days ago. I forgot to set it up the day before the infusion, and the Benadryl makes me fairly unmotivated on actual infusion days. The good news is the lack of motivation lead to me binge watching season 1 of The Crown, which I really liked.
Anyways, back to the topic at hand. IVIG #9 took place 3 days ago (Thursday) and went well. As usual, the IVIG portion was run at 50mL/hour which means it takes 6 hours to deliver 30 grams (300 mL) of Gammagard. Then there is the time it takes to gravity infuse 2 liters of saline – it takes anywhere from 15 to 45 minutes per liter. I took 50mg of Benadryl every 5 hours in addition to Tylenol and Flexeril (to avoid getting muscle spasms from so much lying down and to hopefully help me sleep). I had gotten a decent amount of sleep the night before, and while I didn’t sleep at all during the infusion, I slept 15 hours the night following it. I’ve tried to sleep as long as possible after IVIG infusions ever since the time I slept 18 hours then had no headache…. but staying asleep that long isn’t easy!
I had no headache the following day which is what I expected. I was cautiously optimistic when the full day passed after the infusion and there still was no headache. My only side effect was significant fatigue. If I am going to get a headache, it almost always starts late in the day after the infusion, or it starts two days out.
Yesterday (2 days out) evening, after a headache free day, I told my husband, “I think we may have dodged The Headache.” My husband didn’t want to comment and jinx me. I told him if superstition worked, then I wouldn’t be sick. 😀 (This from the woman who tries to do everything exactly the same as she did for the one IVIG infusion where she didn’t get a headache. My nurse even tries to bring the same energy drink for herself each time. LOL)
Today, I woke up with no headache. I concluded I had dodged the bullet and sleeping a large amount after infusions must be the answer to how I can avoid IVIG headaches. For today, I had planned an inactive but still somewhat productive day. After doing my morning drinks, medications, supplements, and stretching, I was still feeling sluggish. I took my exercise bike for a spin to see if that would get the blood flowing and wake me up a bit. I cycled for five minutes before going back to resting.
After about ten minutes of resting, suddenly there it was. THE IVIG HEADACHE. It isn’t bad, but it is definitely there. Sound sensitivity. Hurts when I talk. Hurts when I lean forward or move my head. Definitely an IVIG headache. How 5 minutes of what doesn’t even qualify as cardio can trigger the headache, which I still have 11 hours later, I don’t know. Although it doesn’t compare to how bad IVIG headaches have been in the past and I can tell it will go away quickly, I am annoyed. I had no clue the IVIG headaches could work like that; if I had, I would have rested more.
Each side effect or symptom I have — whether it be from POTS, my autoimmune issues, or medications — has an entire rule book. Eventually the rules become second nature to me. For example, I don’t even think twice about the fact that I shouldn’t eat a large meal if I want to be able to do housework within the next few hours. However, I am still learning the IVIG side effect rule book – it definitely isn’t second nature to me yet!
Today, I add to my IVIG rule book: If you feel sluggish 3 days out from the infusion, rest.
Soon I will write a post reflecting on my successes and struggles with IVIG thus far, but if you’d like to hear about some benefits now, visit my IVIG #7 post.