Hello all, Before my acute attack last December I was getting migrane headaches. I would get one or two a month and this happened for 3 to 4 months before my attack. I told a few of my doctors, but no one made any real connections. The problem is I have been getting the headaches again. I have had two in two days. I am concerned that my body is trying to tell me something. Does anybody else get migrane headaches before an attack? I am due for an IVIG treatment at the end of this month, but wonder if I should push it up. Any insight would be appreciated. Thank you.

Hello gandcburns. My husband often has migraine-level headaches that you mention. At first, they only occurred in the first 7-9 days after an IVIg treatment (he gets treatments monthly). But since May, the headaches became more frequent, persisting on and off all through the month. He still gets punched with a killer headache after a treatment, but after those side effects wear off, I'm still dispensing headache meds for him at least once every day for the remainder of the month. My husband has only had 2 SCLS attacks since starting his monthly IVIg last January, so in our case we can't really connect headaches with episodes. But we do believe there's something more going on here and plan to discuss with our physicians next time we visit with them. My husband's neck tends to swell up when he's having an episode, so of course I'm worried about what could be going on his his head! Rose: Thanks so much for sharing your extensive experience with this disease. I hope that you find the medical coverage and the understanding from the medical community that your condition so desperately needs. My husband and I have been fortunate here in finding some very understanding doctors in internal medicine, and when we are admitted to hospital we are sent to a ward that knows us and they do everything in their power to keep a close eye on my husband's fluid intake and his fluid shifts in third space areas. But like many here, we always have to do battle with the ER & ICU staff first, who are wonderful but are often working on autopilot. It's the triage practices that are so damaging to us, and although I find many do listen to us, we often come across at least one or two staff members that are a bit condescending, choosing to believe their past experience with other patients and ignoring our advice that this is unlike anything they've ever dealt with. My husband and I have had a letter written up from our internal medicine specialist that lists: 1. What condition my husband has, and how dangerous it is. 2. The markers for diagnosing an episode. 3. The dangers of the fluid shifts. 4. What hospital contains my husband's medical records and extensive treatment history. 5. The IVIg dosage and treatment (my husband is given an IVIG dosage to shut down a capillary flare episode) 6. An instruction to contact internal medicine (who knows about my husband and his fluid shifts) as soon as he arrives in the ER. Most of the time, this letter does the trick. It still takes us several hours to get an internal medicine specialist to come see us in the ER, but the ER staff then have a medical history and know how to treat him. There are times when all of this still fails, and we have to go into "battle mode" with staff who want to quickly dump giant bags of fluid into him. Thus far, I've won 100% of those battles, but I dare not leave him alone for even a second in the ER and ICU. I'm always at his side and don't go home to rest until I know he's safe up in his regular ward.

i have a question about Josephite's, husband's neck swelling up during an episode. Is this something he feels or you can actually see it? This is something i experience, because my neck which was damaged due to an auto accident 13 years ago, flares up every time i have an scls episode/ ivig infusions. I had a cervical fusion(over 5 years ago), but suffer with more herniated discs, bone spurs, etc. Does anyone know if there a correlation? Is it the ivig or is it the scls that could be causing the swelling in the neck area/base of skull?

Hello Maire. My husband's swelling is something that I can actually see. He doesn't notice it as much or feel it, as his neck is pretty large as it is, and the swelling is often quite subtle. But I always notice it. As the month progresses, his neck will slowly get wider. Then he has his monthly IVIg, and his body dumps fluids and his neck goes back to normal. We also notice this happening in his shins. For this reason, we've always suspected that the SCLS is causing the neck swelling. My husband also has a lot of headaches throughout the month (not just after IVIg). I hope that it's not related to the neck swelling, but we need to push our doctors to investigate the headaches further, as they tend to just blame the IVIg (my husband does get migraines immediately after IVIg, but he still has a lot of other headaches throughout the month and we suspect there could be other causes). He's never had a neck injury, so we can't tie this to a physical injury. About 4 years prior to his SCLS diagnosis, he did have a spinal surgery to correct a herniated disk, but that was farther down his spine. We've never made any connection between that medical condition and his SCLS. Feel free to contact me at liesaevans(AT)live.com if you would like to discuss further.

The migraine headaches are back and more frequent. I have read that for many on this site dehydration is a trigger for an attack. As one of my many jobs is a fitness instructor, I am very conscience of drinking water. I have found that I am hyper sensitive to caffeine. I can only drink one cup of coffee in the morning ( hard for a coffee lover). I have had no attack yet,due to my treatments every 2 weeks, but I am concerned as the migraines seemed to be a precursor to my very first attack. Is anyone else sensitive to caffeine? I am curious about the connection of dehydration to SCLS attacks.

My husband has recently developed a sensitivity to coffee, but is okay with other caffeinated drinks (tea, cola). We suspect one of his meds as a culprit though, and not the SCLS.

Hello Josephite, Just a point. Theophylline and Caffeine both work via Xanthines. Except coffee is much milder. Migraines can be due to the disease, the treatment, or the personal response (stress). John

This post (and a couple others) got me thinking - I posted my response as a new subject, "Headaches and swelling..." I don't claim to be any kind of medical expert - just wanted to share an idea that might help. Definitely have experienced that dehydration contributes to headaches. :-) Cathy