Cerebellum Atrophy

@alexgoldman2 Let me know how the MRI results work out for you. Speaking of headaches, I tried my tea differently this time. I was so happy it helped. I put my tea in a tea ball which I let sit in 6 ozs of hot water. I never removed the tea ball. I slowly sipped on the herbal tea. Within a couple hours my headache was completely gone. I am glad to hear coffee works for you. I love the taste of coffee but after several months of no relief with the headaches I gave it up. My headaches then were twice weekly. It was awful. I had discovered caffeine did not help with my neuropathy either. I manage to drink decaf coffee and black tea now. Do you suffer from muscle weakness? A supplement did help me but since it was an acid I thought it was causing a burning sensation in my stomach. Now I know it wasn’t the supplement. I also have double vision from my AVM but have found a surgical solution. I am hoping most of my motion sickness is caused by the double vision. It really limits my activities. Soon I hope to be able to do more. Wish you well in finding more answers. Toni

Somehow, I got lost on this site! Yesterday, I had an MRI, and the folks there were not very nice, anyway for the headaches and such. Alex

Somehow, I got lost on this site! Yesterday, I had an MRI, and the folks there were not very nice, anyway for the headaches and such. Alex

Alex @alexgoldman2, I can certainly relate to that. It is difficult on us no matter the disease causing the alternate lifestyle. I look at it that we are lucky to still be living. So I accept the new way of life and I try to make the best of it by learning to improve on my deficits. It has been 4 years for me but I am slowly making progress. I don’t give up on building on my physical skills. I don’t expect my physical condition to be what it was before my AVM but I do expect to get better the more effort I put into it. As Laurie @artist01 had said, it is what it is. So let’s make this new way of life better and concentrate on the things we can do. Originally I was not able to walk but I was determined to take steps again. Since I could not drive I had physical therapy come to me through home health care. I was put on an exercise program to complete exercises while on the couch. I have muscle weakness and cannot tolerate much activity without taking breaks often. About 6 months later I had physical therapy(a different therapist) again through home health care. This time the physical therapist used a gait belt on me to prevent me falling as I learned to walk. My exercises were to walk forward from the front door to the back door of the house and then walk backwards across the living room. At the end of my session in front of my couch, I tried to balance while standing on one leg then switched to the other leg. Within a few weeks I became strong enough to use a walker to get around instead of my wheelchair. A year later my kids were able to drive me to physical therapy outpatient services. It was there I had learned to upgrade to a quad cane. I no longer used a walker to get around. In fact I did not need a device for inside my home. I only used a quad cane for outdoors on unleveled surfaces such as the lawn and graveled driveway. It is not easy but our will power can drive us to reach our goals. Because of Covid-19, last year I did not participate in any physical therapy outpatient services. In January of this year I began exercising 10 minute intervals and hope to keep increasing with the number of intervals as I go along. I need to intensify my workouts so I purchased a manual treadmill. This will also allow me to take longer walks as I become stronger. I can feel improvement because walking outside with my cane has gotten easier. I believe going slow can be more successful for reaching our goals because too much too soon will cause us to quit.
Alex, have you talked with your doctor regarding your depression? If exercising does not offer help perhaps you may need professional intervention by speaking with your doctor. Let me add, I take no medications at this time but I do take a few supplements like fish oil which my neurologist had recommended at the time of my AVM. Best wishes to you for a better recovery. Toni

@alexgoldman2 Alex, you are so right. It is very bad psychological condition, especially with the headaches and dizziness. I have both. My crap is apparently at least in part the result of a form of Amyloidosis (Gelsolin) and RYR2, a heart dilated cardiomyopathy and some other dilated cardiomyopathy. My heart, as the Left Ventricle shows on the second line of a good 12-lead EKG (when the lead tracing is magnified) barely gets enough voltage to beat normally. So it tries to hold the beat longer (long QT sign). The result of this is that the brain does not get enough blood to feed the cerebellum or even to keep it warm. So the brain ache and gets confused. I have to wear a warm stocking cap all the time to avoid the pain and dizziness, and plaster my forehead with psoriasis cream with aspirin. That keeps me going. Put your 12-lead ekg on a computer monitor, and magnify the first and second lines to the point you can see the vibrations. And also compare the various QRT signals. My older sister and I have the same issue, and were diagnosed the same way, by EKG and DNA.

I don't know whom to address this too. I notice no one addresses the emotional aspects of having this condition. I find myself feeling sad, if not depressed and hopeless, over having constant headaches and dizziness, not being able to walk or live a pain free life. Alex

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!

@artist01 perhaps the tea may help you. I’m glad you had found some relief from caffeine and pain medications for it to at least be tolerable. My headaches are now 1-2 times per month. The difference being the pain may last up to 2 days and it always includes pain behind my right eye. I do not know how you got used to yours when it is not easy. Glad you found a way that helped you. Toni

@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.