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!

Hi,

Sorry to hear your child had aseptic meningitis. Unfortunately, it is a possible side-effect of IVIG...and one that should have been discussed with you before infusion. It is usually a rate related problem...as in the rate in which it is infused. There is a difference between how fast (rate) and how much (overdose). I assume you mean it was infused faster then recommended...not that he/she was given an overdose (too much).

I had received IVIG for 9 years before getting aseptic meningitis after an infusion. Mine was not rate related (it's not ALWAYS the cause) as my rate was way below the standard (only 60 ml/hr).

I commonly got severe headaches right after infusion for several days. This is why my rate was so low. But my headaches would always go away. It took over 30 days after the AMS for them to go away, but eventually they did.

IVIG crosses the blood brain barrier and can cause inflammation of the meninges. I wonder if the chronic inflammation your child endured actually caused a small leak in the spinal fluid. This would cause chronic headaches...until the leak is fixed. Sometimes these leaks can be very small and therefore not easily detected. I am NOT a doctor and I'm only guessing at a possible cause. I just thought it might be worth asking about.

The other thought was if he/she got steroids as pre-med? Sometimes steroids (particularly by IV) can cause severe headaches. Does your child still receive steroids for their condition? If so, this may be the cause of the headaches. Steroids also cross the blood brain barrier and can cause the same type headache.

Just a couple ideas to think about.

How old is your child? Just wondering if they are of age to adequately report side-effects? It sounds as if he/she is too young as for why the headaches weren't brought to anyone's attention. If he/she is old enough, ask if the headaches subside at all while laying flat and worsen if sitting up. I would also ask if the headaches get worse after steroids (IV)...IF they are receiving them.

Without much luck, I have been looking for people like me -- where the headaches persisted for months after the last IVIG infusion. I cannot believe your daughter's have persisted for [B]years[B]!

I see your post is older, however I am wondering if you would be willing to share how your daughter is doing? Hopefully the headaches you wrote about are I thing of the past.

I had 2 months of IVIG (dose of 1 gram per kilogram of body weight). I suffered meningitis after (they think - wasn't checked) and have headaches ever since. It has been 8 months since my last infusion.

I have read that post-meningitis migraines are a phenomenon, so it isn't unheard of. However, the migraine treatments we have tried have not helped. I am going to be checked for intracranial hypotension and CSF leak soon.