Anyone else have a brain avm (left frontal lobe in motor strip area for me) that has problems being in the heat/direct sun? I seem to not be able to tolerate it as much now, I.e get a headache in avm area, feel nauseous and weak and just plain not good. I live in Fl btw also! Just wondering if it could be from the avm or just me not be able to tolerate the SUV anymore!
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Yes, Michele, other members have reported sun sensitivity after AVM treatment. It's hard in FL, where so many social occasions are by the pool or at the beach. I suggest getting some really cool sunglasses, a big, floppy hat, and picking the shadiest spot whenever you can. For walking or jogging, pick the early morning or the evening. Just do what it takes to stay feeling good. And, stay hydrated.
Its ironic you mention this as i get home from work after a nice sunny day nearly 3yrs to the day i had by AVM surgery and i have a great headache...just never the same i guess and i agree it is a common problem with AVM'ers...stay in the shade where possible and keep hydrated...thats what i try and do..God bless
Yes! I definitely had problems being in the sun after my surgeries, but it wasn't so much the heat...just the fact that the sun was too bright. I had to wear sunglasses all the time, otherwise I couldn't see, I had to squint, and it gave me a headache. It only lasted for a few months for me and then it got better!
Are you taking any meds? Sometimes those can make you sun sensitive too! I found an old discussion which you might find interesting…http://www.avmsurvivors.org/forum/topics/sensitivity-to-sunlight?commentId=1543517%3AComment%3A185779
Michele, I don't live in FL, but since my AVM rupture in my left temporal lobe, I have a problem with heat and sun sensitivity.
I will have a seizure of the sun is in my eyes. Two things I've learned, always where sun glasses and a hat to keep the sun out of your eyes. You may find other ways to keep yourself safe. If so, please let our members know.
Stay Strong & Positive!
Mine is not in my brain nor am I light sensitive but I have severe heat and cold intolerance. I start feeling sick and nausea when I get the slightest bit overheated. I love hot showers but if I get to warm then I feel sick. I mostly have problems with the cold temps though. The summer is the hardest because of the air conditioning everywhere you go. I get so cold that I can’t get warm. It’s awful. I am not on any meds so mine is not related to that.
That’s interesting, the only procedures I have had done are embolizations and radiosurgery. I will defhave to get some sort of hat this year and limit the amount of exposure.
I have my AVM on the same spot as yours, and let me tell you that I can't even do my hair with the blow dryer, the heat gives me a headache right away.
Hi Michele,
Mine is in the left frontal lobe too. For me it's more of the hot days than it is the sun. And I'm even bald..lol Keep an eye on what the humidity is - that's what does me in. I get weak, light headed, dizzy, and my tremors get worst. I get more seizures in the summer than I do in the winter too.
The heat takes a toll on many of us. When you start to feel that way, try putting and ice pack on the back of your neck and if you want, another one on the forehead. When I do that, it brings me back to feeling normal again very quickly. A nurse taught me this trick (wink). I've even been known to go outside and to the store with an ice pack around my neck when it's really hot out. It helps keep me stable.
If you want to be fashionable about it. You can cut up an old t-shirt and wrap it in that or.. get some material at a fabric store, or wrap it in a thin scarf. I'm a guy so I don't care what it looks like for me. I just use a simple white tee towel.. hee he
Ben
Hi Michele. My sisters Avm rupture in the brain was caused by really hot weather here in the Philippines. Her avm area throbs a bit and she gets a bit of a headache. The doctor advised her to just stay in an airconditioned room when the weather is really hot.
Hi Michele - yes, even though my AVM - now obliterated - was in my cerebellum, I’m extremely sensitive to direct sunlight. Sunglasses or a shaded and quiet room tend to work well for me.
I get headaches from extremes in temperature hot or cold. The heat or direct sunlight often sets of f occular migraines. These start off with spinning, flashing pin wheels of color in my right eye which was the eye that was most affected by the AVM rupture then turn into headaches.
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I definitely had issues with heat for a while. Any time I got too warm, I would feel sick and weak like I was about to faint. I mentioned it to my doctor, and he said it might be a thyroid problem, which can happen with some medications. Luckily, the issue went away when I got off of the last of my medications. If your problem persists, I suggest asking your doctor about it.
I cannot take the heat or sun anymore. I get headaches and my body just feels like I am overheating.
Mine is in my brain, right temporal and occipital lobes, and I am heat/cold sensitve, too. Not too severe, though. The temps have to be pretty extreme. But the light! This is the 1st winter I've had to wear sunglasses most days because of the sun or glare from snow.
Yes yes and yes, I get blinding migraines from the sun. I have been taking painkiller ever since my avm surgery also in the motor strip area. Live in Toronto extreme heat in the summers . What I feel is sometimes migraines sometime a deep aching pain in my head comes and goes. Been living with this since my surgery back in 2000. But stress is also a factor too, if I have too much stress I get migraines. Interesting yours is also on the motor strip.