Hi. Thank you for this forum! I'm so glad to find it.

My child received IVIG therapy about 3 years ago for her autoimmune disease. Unfortunately, she was infused at nearly 4x the maximum rate identified by the manufacturer (i.e. overdose).

She suffered aseptic meningitis syndrome (AMS) with each over-dose, with her symptoms worsening each time. Infusions 1-3 were given 2 weeks apart. Infusions 4 & 5 were given 1 month apart. I did not know what was happening and local providers failed to identify the AMS.

After infusion #1 my child lost the ability to spell. After infusion #5, my child was in excruciating pain for 3 -4 weeks and missed school. It has been nearly 3 years with no further IVIG. Most of the bad things have improved significantly.

However, my child has persistent, unusual headaches that started with infusion #1 and for which she can get no relief. The headaches come with nausea and the sensation that pain is circling her head (not a dizzy sensation). Recently there was a new kind of headache -- similar to a thunderclap headache.

Has anyone experienced chronic headaches after therapy -- headaches that did not exist prior to IVIG therapy but that won't go away despite years post-IVIG?

Your help would be appreciated!