Health Update

Ouch! IVIG Induced Meningitis

Jackie

Well.. I spent the day at the ER yesterday. Fortunately, they saw me and immediately got me a room. I could barely speak and spent my stay all curled up in a pitch black room with a towel over my head. The staff were very nice about working in the dark.

I had the most agonizing headache of my life with eye and skull pain. I’d say a 9 out of 10 and wish there was a better word than “headache” to call it. Anytime I’d move my head or change position, the pain become even more severe and throbbing and it felt like my eyes would explode out of my head. I barely opened my eyes all day. Light and sound are painful. Today the headache is still horrible, but the strong pain meds are allowing me to look at my phone long enough to type this in my dark room. I can talk in short sentences every once in awhile, unlike yesterday. The pain is a 7/10 and when I change positions, a 8.5/10. I don’t plan to find out if it is still as severe without the meds as it was yesterday. I slept about 40 minutes at a time last night.

I was and am still vomiting and the meds aren’t working to stop it. That’s very problematic for my POTS. I got fluids yesterday and hope I can keep some down soon today so I don’t have to go again today. My blood pressure yesterday wasn’t cooperating at all either, which isn’t a problem usually as long as I remember my meds, and was 80/60 or something like that.

I’m going to be okay. All of these things are normal side effects and I have no regrets. Next month we will run the IVIG slower and I will take steroids beforehand. The IVIG day itself was comfortable except for some vertigo.

I’d type more but typing this is making me more sick pretty rapidly! Just wanted to update everyone.

33 thoughts on “Ouch! IVIG Induced Meningitis”

    1. Hi Mom,
      I have been reading Jackie’s blog for some time and following her journey. I have an auto-immune disease myself and had IVIG for 5 years. I know when I had my first infusion, I was dreading something like this happening but it went well. I ended up with a mild reaction later and had hydocortisone and claratine beforehand. My love and thoughts go to you too Mom as so matter how old Jackie might be, she’s still your little girl and you’ll always be her Mom. Love and blessing all the way from Australia,
      Rowena

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  6. OMG! You crazy girl blogging today! For some reason I am not surprised by it either! I think next time we need to arrange the live video cam so we can monitor you without blowing up your Mom’s cell phone with text messages checking up on you! 😉

    Breaks my heart you got so sick, wish we could help. As always, I am very proud of your positive attitude & courage!!!!!!!!!!!!!

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    1. Well, I wanted to tell everyone what was going on and for a period of time after my Dilaudin and Benadryl, I could handle light, so I went for it. I should have just posted my Mom’s cell and said “text this number to be added to group message” 😊

      You help by always being there for me. I know I can always count on you two!

      By the way, I will be checking my house for cameras now.

      Love ya!

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  7. Seriously people find out what is causing your autonomic dysfunction! There are reasons stop letting the docs cop out. I hope and pray everyone will feel better and be rid of this illness along with all other desases and cancers.

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    1. Thank you! I am on the mend and still excited about the treatment. Next month we are going to do things a little differently in hopes of avoiding a repeat of this month.

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  11. I developed the same thing, I had intensive IVIG for persistent parvovirus and developed aseptic meningitis each time. They ran the IV too fast, that’s the biggest issue with gammagard. I now have POTS because of having a persistent virus, so I receive IV fluids and subcutaneous gammagard weekly. Make sure you are getting plenty of fluids, that’s the only thing that helped my headache from the meningitis. IV fluids. Feel better.

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    1. Thanks for the tip and I am sorry you can relate! I definitely had plenty of fluids (2 liters) but it may have been too fast. We will go half the speed next time.

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  12. You have been such a warrior through this! I admire your strength and fortitude more than I can express. I hope you’re beginning to feel better, and next month, things go much more smoothly for you.

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        1. Yes, first my doctor wants to treat me with DHEA and Pregnenolone to decrease reactivity (because apparently this is shown to help in case studies), then we want to do an IV saline trial because I had a reaction to the fluids I got a few years ago. Then I’m going to test a few other antihistamines. THEN I’m going to try the subQ Ig with fluids and premedication.

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  15. My first round I had “the disaster” as well. It’s gotten easier for me, and I’m glad now you know you medicate better. I’m stubborn and it always comes back to get me, ha! 💜

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