This seizure happened in my sleep (guessing a grand mal) and I woke up with a migraine like no other I had before. It traveled all the way down through my neck and back, just unbearable feeling. I was crying uncontrollably at times and I was just in so much pain from my head down to my mid back. To top it off, we went to the wrong hospital who didn't know anything about my condition. My husband was honsetly teaching the nurses and ER doctor about it. I had another small seizure in the ER wile waiting for my room. Now I have to wait to see my "real" doctors to see what "really" happend because these doctors do not know my history to properly diagnose my ct scans. They can't tell if the "shading" on them are from the surgery or if they are showing signs of a mini stroke. They said there was no bleed. My concern about this seizure was the amount of pain I was in. It was like a 14 out of 10. They were giving me dilaudud and it was breaking through that within 40 minutes. All the way through my neck and back. This lasted for over 24 hours. I still have pain but it isn't as bad, but enough to take pain meds (firoecet) My avm for those who do not know is on my left occipitemporal lobe and it was treated with gamma knife this past Feb. I also have a benign hemangioma in my neck bone that was never treated.
Wow, that sounds just awfuI and you have my total sympathy. I hope you are now on the mend and the headaches are easing off.
I live with daily incapacitating left sided headaches. They started after I had a bleed in May 2009. The first hospital ER I went to missed the bleed totally. I actually only found out that I had a bleed last year, two years from when it started. One of the specialist I am seeing went through all of my scans from the last 3.5years and said I had a bleed and everybody missed it because the imaging that the first hospital did was inconclusive and they didn’t redo it. I really hope you were able to see your regular docs. I had pretty good luck at ER with two other hospitals, but thinking back about the process at the first one scares me a bit. I do stroke rehab at that hospital but would never go through their ER for anything related to my AVM.
I still take long acting dilaudid every day for the pain. I’ve been able to taper off the dosage recently because I’ve been feeling a bit better for the last couple months and the radiation necrosis area is shrinking. I have good days and bad days from the headaches and its been a long process. But it’s definitely improving, so I’m optimistic.
Please let us know how you are doing and take care of yourself. Hang in there.
I had gamma 1 yr ago Nov. Left frontal lobe AVM. Just had a seizure Friday night, folliwed by another within 45 minutes. The most painful thing ever. I am now on Keppra and it makes me sick. But its better than the seizure pain. There us no one or anything that tells me pain with seizures. It started on my goot and moved up my right side to my head. The second time I passed out from the pain.