Have any SCLS patients here had a history with pain syndromes?

My husband started severe intractable migraines when he was 15 years old, he's now 61.

He was diagnosed with fibromyalgia at 30 years old.

His naturopathic health care practitioner believes these may be related to and perhaps caused by SCLS, just not severe enough in the past to manifest as full-blown life threatening episodes.

I don't recall intractable migraines, or pain issues generally, being mentioned as part of the medical history of patients in the (by now fairlry large) medical literature on SCLS, so I wouldn't give credence to what your naturopathic practitioner hypothesized.

Incidentally, headaches are one of the potential side effects of IVIG treatments, but they can be alleviated or resolved by taking Tylenol in the days after the infusion.

Thanks Arturo. Yes, he did have a bit of a headache on the evening of day one, but not as severe as he’s used to. They will premedicate with Benadryl and Tylenol next time 

Hi David.

I Have also been suffering with migraines and probable Chronic Capillary Leak since approximately the same age of 15. I am now 57. The migraines arrive for 3 days as the fluid is retrieving. I am currently improved on Hyrdacortisone which I have been taking for the last 6 months. If I can control the swelling, I do not get migraine at all. If I swell even a little bit, I will absolutely always get a 3 day migraine in 2-3 days time. I believe that while migraine appears to not be a part of SCLS for most people, I have a predisposition it to as other family members do. The Chronic SCLS seems to be a trigger. I take triptan dugs for the migraines, usually Relpax 80mg

Thanks Annmarie. Oh, I wonder if Dave has had a mild form of chronic SCLS if there possibly can be such a thing. 

He certainly hasn’t suffered as much as some of the folks on this board with full blown attacks chronically.

He also uses triptans, has injections and tablets for pain. Is trying Ajovy injections, one of the migraine preventives that just became available. Not sure if it’s helping yet.