IVIG, aseptic meningitis vs. CIDP, autoimmune autonomic neuropathy


Well, my first round of IVIG is finished. Initially, I was due for 6 treatments over the course of 3 weeks. Each dose of 1 gram/kg. After getting aseptic meningitis after the first treatment, my infusions were spread out over 6 weeks.

Aseptic meningitis. One of the worst experiences of my life. It is basically a swelling or inflammation of the lining of the brain and spinal cord.  The symptoms are neck pain and stiffness and massive headache. Head pain doesn’t even suffice to describe it. It was so painful and came on so quickly. The best word to describe it is crescendo. By the time I made it to the emergency room it was so bad I couldn’t walk, I was vomiting, and I couldn’t see correctly. It felt like there was literally not enough room in my head for my brain. Dilaudid IV did not touch the pain. Eventually, the doctor gave me a cocktail that he reserves for his migraine patients: Compazine IV, Thorazine IV, and Benadryl IV given all together. Now, this combination did not knock the headache out completely, but it made it tolerable enough to be able to go home and recover. I was in bed for the next 4 days. I wouldn’t wish that on my worst enemies.

I would suggest to those who are getting IVIG the following formula to prevent aseptic meningitis:

1. 500cc NS IV prior to infusion.

2. Benadryl 50mg IV/ Demerol 50mg IV prior to infusion

3. Benadryl 50mg PO every 6 hours / Ibuprofen 600mg PO every 6 hours throughout infusion and for 48 hours post

4. 500cc NS IV post infusion.

5.  Decrease rate of infusion to less than 2mg/kg/hr

6. Drink water continuously beginning 2 days prior and for 2 days after infusion

Disclaimer: You may do all of these things to prevent aseptic meningitis and still get it. Sigh.

I “only” got aseptic meningitis two times out of the six infusions.

Side effects aside, I do believe I’m seeing a small amount of progress. In all honesty, I was hoping for more of an “out of the wheelchair” experience. I was hoping I’d be back in the world, working out, working for that matter, and back to the other things I’ve come to enjoy in life. But there is still hope. There is always hope. There may be a latent effect of the treatments. I may also benefit from an increased frequency of infusions. We will see. More tests in the near future.

And so I press on.

4 Comments on “IVIG, aseptic meningitis vs. CIDP, autoimmune autonomic neuropathy

  1. Pingback: ~~WORD OF THE DAY~~ | YouthVoicesTT

  2. I have been following your posts. I found you by doing a google search for idiopathic radiculopathy 🙂 . I am so thankful you are keeping your blog updated, since I have gotten sick I have been reading other peoples health journey’s. I feel like there is hope to get a diagnosis if others have.

    Take care.

  3. Me again =).

    What was the program you went to at the mayo clinic? Would you recommend it to someone who is sick but every test is a dead end? And if you don’t mind me asking, how much does it cost. I am from Canada so it would be out of pocket.

  4. I’ve had meningitis and I agree, worst pain ever…. being a nurse and having a cold/virus at that time I was unsure about whether I had a migrane or meningitis because I hurt all over and so the telltale sign of a “stiff neck” wasn’t really a sign because I could move it, but it just hurt. I got concerned when I spiked a temp of 40.1 celcius (104 f) and the “migraine” became positional = WAAAAY increased pain with sitting up or standing – goodness it felt like I wanted to rip my head off my shoulders! It really does suck so badly. Such a terrible thing that you had to experience this sort of thing TWICE! However, they say that after you have it once, it makes you more susceptible so do be careful!

Leave a Reply

Your email address will not be published. Required fields are marked *