I say you gotta do what you gotta do. Maybe you won't have a headache this time.

Crisis is no fun. Many of us have had near-death experiences because of this crazy disease. Hope you feel better as every day goes by.

Keep us posted. We will be thinking of you.

TJ from CA

With the IVIG, have you tried the subcutaneous route instead of the IV route? I've been reading that people don't have as many headaches with that method, but it's not used as widely in the US as it is elsewhere. It might be worth seeing if your doctors could at least try that method to help you stay out of crisis AND avoid these awful migraines!

Glad you are eating again! When I got IVIG I think the strategy was to drink a lot of water -- that seemed to work and I never got the headaches. But I bet they told you that and you drank a lot of water and you got the headaches anyway!
And WMinaz -- glad to hear you are doing better. When I was in the hospital I was dying for a cup of coffee, because I get caffeine headaches when I don't have it. Try getting coffee in the ICU!
But coffee is good for MG -- it's a natural anticholinesterase inhibitor! ~Joe

That's exactly right , Joe about the coffee. Before I got really bad, I had taken to drinking a lot of coffee, especially in the afternoon, when I'd get really weak. Didn't know why at the time, but I'd always feel stronger after my huge cup of coffee. Finally, though the coffee trick was not enough.

First day home from the hospital and it was wonderful, although I did overdo it a bit.....but isn't that what we do? ;)

My reg neuro came to see me in the hospital yesterday before I left, which really surprised me but warmed my heart...yep, he's a keeper! He wants to restart my monthly IVIg treatments starting in July. Also increase my cellcept when I see him in July. He seems to have a clear plan in place. He is also going to have me get in contact with the headache specialist at their office because he thinks this would be good not just in general, but bc of the side effects from the IVIg I have experienced in the past and to have a good plan in place I case we need one in the future.

I had a mild to moderate headache all day today but just to same naprosyn for it. It helped a bit but not a lot. We will see how things progress the next couple of days. Trusting for no bad side effects this time around - this was a different brand of IVIg than I've had before so hoping that makes a difference as well.

As far as the sub-q IVIg, according to my neuro, it is not widely available except to study patients but he was going to check into it - this mainly being due to my horrible veins and multiple IV site needed for infusions and a failed port after 1 month. :(

Thanks again for all your support and well wishes!!

I posted earlier when I was in the hospital. It was my first time due to MG. I had 5 plasma pharesis (sp ?) sessions and by the fourth one I was dramatically improved. Came home on Mon and I get IVIG the next two days (Thur/Fri). First time for that for me also. On the subject of coffee, I spent four years in the service mostly in missile sites and the standard way we made coffee was two parts coffee and one part salt. It was govt coffee so it was the only way to make it palatable and everyone, without exception, made it that way. I did not drink coffee for many years thereafter but my neuro said it would be good for me so I now drink it and will drink some tomorrow during the IVIG. This is all new to me so it is really helpful to read of others' experiences.