Cerebellum Atrophy

@avmcbellar Yes, those headaches. When first diagnosed with the brainstem AVM, I had constant every day headaches and was prescribed Elavil, which helped the headaches but turned me into a zombie. There have been numerous prescription pain killers since, but I've finally stopped all of it so I could regain my brain power once more. I still get daily headaches but either I've grown accustomed to them or they're less painful now. It is what it is! I don't tolerate prescription meds of any kind, so am happy my doctors comply with that, and I can think clearly again.

Hi @artist01 oh those headaches are awful to deal with. At first they were occurring twice a week. I was drinking regular coffee then every day but it did not help. My doctor wrote a prescription for a pain killer which I never filled. I opted to use Tylenol instead which he approved but it did not help either. I found that a bag of ice on my head gave some relief by decreasing the pain so I could at least sleep. Last year I eliminated coffee from my diet because less caffeine helps to decrease my neuropathy symptoms. Consuming less carbohydrates also helps.
The tea I drink for headaches is an herbal tea containing turmeric which is a blood thinner. The tea has no caffeine but it seems to work well for me. Thank you for the suggestion. I now drink decaffeinated coffee and an occasional regular orange pekoe tea.
After my last surgical repair of my AVM I was left with neuropathy. I did notice I had a burning in my stomach or esophagus which made me miserable all day, I did not know the cause. I even stopped coffee because of its high acidity. I thought maybe it was the ALA supplement so I stopped that too. No Mayo Clinic members responded to my relevant posts for helping me find answers. It seemed no one had a similar experience. Through all my trial and error attempts, I believe I have finally figured it out. To beat it, I eat small meals plus exercise. What a relief!

@avmcbellar Toni, I noticed you drink tea for a headache. I have found that coffee is very helpful for my headaches too. I've read that it's the caffeine that works, by enlarging the restricted blood vessels, so either tea or coffee is a great solution!
I have an inoperable brainstem AVM, diagnosed in the late nineties. The docs said at the time that I was a walking time bomb, but so far, so good!
I also have Giant Cell Arteritis, diagnosed in 2019, so lots of temporal pain and multiple problems from that too.
I've posted on other Mayo discussion sites that I've just started walking outdoors again, with a walker, after a lot of wheelchair stuff. It all helps! Warm regards, Laurie

@alexgoldman2 Glad to hear it is helping somewhat for your headache. The same is true for me. When I drink the tea as soon as I start to feel the headache coming on, the headache disappears. But after the headache is full blown, the tea helps to decrease the pain slightly. Better to drink the tea even if you get s false signal. The tea won’t hurt to drink otherwise. I would rather drink the tea to be safe than sorry. What is the reasoning for the MRI? Do the physicians not expect the headaches? Hopefully, soon you will get more answers. The headaches for me were expected. It is part of the healing process I was told. Luckily for me the headaches have decreased over the years in occurrence. I have purchased a manual treadmill so I can exercise more often. Perhaps more exercise will expedite the healing process. Exercise can be a big help with our health overall regardless. I will find out in the next few months if it helps with the headaches. All along from the beginning of my AVM I have kept active regardless of how difficult it became because of the dizziness and headaches. I can certainly say I made significant progress. Initially I was not able to walk at all( I was in a wheelchair) but now I am able to walk on leveled surfaces without a device. I learned to use a quad cane for unleveled surfaces such as the graveled driveway and lawn. Take care of yourself. Thanks for sharing your positive experience with the tea. Toni

Hi avmcbellar, The tea works when I have warning that a headache is coming on, not at all when the headache happens spontaneously; another MRI is in my future. Alex

Dear avmcbellar, Thank you for the Tea tip; I will check it out!. Alex

Hi @alexgoldman2 the tea is called Shifa Tea which can be purchased through amazon. I followed the member’s directions to make a concentrated tea. I did that the first couple of times but have decided now to try the directions on the bag for a hot cup of tea. For the concentrated version: Add 1/2 the bag of tea to a quart of boiling water. Let steep for an hour. Save the tea in the refrigerator. Put a few ounces in a cup and add hot water for a hot cup of tea to sip on. Since I only needed 1-2 cups per month, I chose to freeze it instead in an ice cube tray. To make iced tea I would take out a couple of pieces and add a little water to sip on slowly. When I sipped on the tea as soon as I felt the headache coming on I had better luck. The headache would go away. The tea seemed to decrease the intensity of the headache the longer I waited. I will be happy to answer more questions. Best of luck. I hope it works just as well for you or even better.Toni

Hello avmbellar, What is the tea that worked for you? Thank you for your kind wishes; I am doing the best I can whenever I am able.
Alex

Dear, and I mean dear Menvillle, I am so sorry that you have traveled this road. I feel sad that my body doesn't work, though my mind is clear. I trust that is true for you, though your body stops working, your mind sounds fierce I wish you well.
Alex

I was diagnosed with similar degeneration in the brain at 31 years old. Mine started with the vermin’s, mid-brain and pons and went from there. I lost mobility fairly quickly but worked on it for years in and out of wheelchairs and walkers. Spent months in-patient at brain & spinal rehab facilities like TIRR, etc. My issues with atrophy wasn’t limited to just the brain though. It hit ALL of muscles and thus became more systemic. I did have a stroke in 2015 and have some heart weakness. But as most people have indicated, this is a wait-and-see game and it’s very complicated. Feel free to message me if you have additional questions. I wasn’t given much hope in the first year or two. I’m now 43 and have been learning to navigate the muddy waters for much longer.