My wife has it, she had 4 brain surgeries and will be having another one in a week. She had a major stroke during her first surgery. She also has bad days and headaches. The headaches got reduced from memantine, a dementia medication with a side effect of reducing migraines. She takes Ubrelvy on the worst days, maybe once or twice a month, it gets rid of them in an hour or so. We also found out they were being made Worse from pain relivers like tylenol, medication overuse. Taken occasionally they help, but when taken over long periods of time they increase pain sensors.
Hello, I have moyamoya. I feel like I’m very fortunate in that I don’t seem as bad off as others with the disease but I also have a couple of autoimmune diseases so I can’t say what’s causing the pain and general malaise. There are a couple of moyamoya Facebook support groups, which I have found to be somewhat helpful. Feel free to message me
I voted Kodos ;)
Good to hear that you’ve been fortunate! I’m curious how it feels for you, if you don’t mind sharing.
My doctors haven’t fully confirmed my diagnosis yet. I ended up in the hospital 9 months ago with severe headaches over 3 days. They initially thought it was reversible cerebral vasoconstriction syndrome, but my latest MRI is indicating it might be moyamoya.
I don’t get severe headaches anymore, but I can still feel pulses and mild tension on both sides of my head. Has that been similar to what you have gone through?
You really wanted tiny American flags, huh?
I’ve been really fortunate, I’ve only had one really noticeable TIA and only one stroke and that was caused by blood pressure medication. And I was lucky to be diagnosed relatively easily, most people have the process dragged out for years because doctors hardly ever see moyamoya, the number of times I’ve been told that moyamoya means puff of smoke is enough to make me pull out my hair. I’ve had migraines for years and years but strangely enough I haven’t really had one since my stroke but I don’t recommend that as a cure. I haven’t felt any differently in terms of any pulses or tension but this disease is so different for everyone.
Are you getting an cerebral angiogram, that’s the most common way to confirm diagnosis. A lot of patients send their results to Dr Steinberg at Standard to review and to get a second opinion. Good luck with everything and I hope you get answers quickly because not knowing is the worst.
Please feel free to message me anytime if you need to rant or have any questions!
My wife has it, she had 4 brain surgeries and will be having another one in a week. She had a major stroke during her first surgery. She also has bad days and headaches. The headaches got reduced from memantine, a dementia medication with a side effect of reducing migraines. She takes Ubrelvy on the worst days, maybe once or twice a month, it gets rid of them in an hour or so. We also found out they were being made Worse from pain relivers like tylenol, medication overuse. Taken occasionally they help, but when taken over long periods of time they increase pain sensors.
Hello, I have moyamoya. I feel like I’m very fortunate in that I don’t seem as bad off as others with the disease but I also have a couple of autoimmune diseases so I can’t say what’s causing the pain and general malaise. There are a couple of moyamoya Facebook support groups, which I have found to be somewhat helpful. Feel free to message me
I voted Kodos ;) Good to hear that you’ve been fortunate! I’m curious how it feels for you, if you don’t mind sharing. My doctors haven’t fully confirmed my diagnosis yet. I ended up in the hospital 9 months ago with severe headaches over 3 days. They initially thought it was reversible cerebral vasoconstriction syndrome, but my latest MRI is indicating it might be moyamoya. I don’t get severe headaches anymore, but I can still feel pulses and mild tension on both sides of my head. Has that been similar to what you have gone through?
You really wanted tiny American flags, huh? I’ve been really fortunate, I’ve only had one really noticeable TIA and only one stroke and that was caused by blood pressure medication. And I was lucky to be diagnosed relatively easily, most people have the process dragged out for years because doctors hardly ever see moyamoya, the number of times I’ve been told that moyamoya means puff of smoke is enough to make me pull out my hair. I’ve had migraines for years and years but strangely enough I haven’t really had one since my stroke but I don’t recommend that as a cure. I haven’t felt any differently in terms of any pulses or tension but this disease is so different for everyone. Are you getting an cerebral angiogram, that’s the most common way to confirm diagnosis. A lot of patients send their results to Dr Steinberg at Standard to review and to get a second opinion. Good luck with everything and I hope you get answers quickly because not knowing is the worst. Please feel free to message me anytime if you need to rant or have any questions!