Can cerebellar degeneration bring sudden death while sleeping?

Posted by bradsohns @bradsohns, Aug 13 1:57pm

I was diagnosed a year ago at Mayo Clinic Rochester with cerebellar degeneration. I have the normal gait and MS-like symptoms on my left side, some slurring, some balance and coordination issues and difficulties quickly processing information when lots of information is being thrown at me. Fortunately I'm at a healthy weight due to almost-daily biking of 25-30 miles.

I have been using a CPAP machine for about 2-months after going through the Mayo sleep lab. It's been amazing. Now my question. Can cerebellar degeneration bring sudden death while sleeping? I had a very frightening experience last night where I believe I could have died. I might be afraid of going to sleep tonight. (And yes, I did message my Mayo sleep physician. Just looking for any other input or personal experience.) Thanks

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases group.

Hi @bradsohns, welcome. I added your discussion and question to the Cerebrovascular Disease group where you can connect with others who have first hand experience with cerebellar degeneration or atrophy, like @larryh123 @keithl56 @dkeg @nleejewell and @naturegirl53

You might also be interested in this related discussion that @howardjames started
– Cerebellum Brain Atrophy https://connect.mayoclinic.org/discussion/cerebellum-atrophy/

Brad, I can hear that you are worried and am glad that you messaged your physician as well as seeking thoughts from fellow patients. Do you live alone?

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@bradsohns I don't know much about cerebellar degeneration so I cannot answer that question. I do know that you are getting good care at Mayo Clinic in Rochester because that's where I get my care as a cancer survivor. The Mayo Clinic medical providers are very good about quickly answering messages on the portal so I'm hopeful that you will hear from your doctor very soon.

What happened last night to your breathing patterns while sleeping sounds very frightening to me. Do you have a partner or loved one who can give you emotional support? I'm sending you positive energy, my prayers, and compassion to help you through this. Will you let me know if there is someone you can talk with or call tonight if you cannot sleep?

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@bradsohns I've been thinking of you today and wondering how you doing. Were you able to sleep last night? I know it's Sunday night but I'm hoping you've heard from your medical team or called and talked with the provider on call. Have you considered doing that?

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@naturegirl5

@bradsohns I've been thinking of you today and wondering how you doing. Were you able to sleep last night? I know it's Sunday night but I'm hoping you've heard from your medical team or called and talked with the provider on call. Have you considered doing that?

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Thanks for your reply and concern. Yes, I was able to sleep okay. The last two nights went well. The Mayo doctor won't reply for 2-4 days according to their portal reply message. The world of Cerebellar Degeneration seems to not be well understood and I'm not expecting anything profound since I was told by Mayo a year ago that there is no treatment and no cure. I'm doing well though. It was just such a frightening experience that it shook me. Envisioning one's death was not fun. I'm a very positive person though and I enjoy every day with my awesome wife.

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@bradsohns

Thanks for your reply and concern. Yes, I was able to sleep okay. The last two nights went well. The Mayo doctor won't reply for 2-4 days according to their portal reply message. The world of Cerebellar Degeneration seems to not be well understood and I'm not expecting anything profound since I was told by Mayo a year ago that there is no treatment and no cure. I'm doing well though. It was just such a frightening experience that it shook me. Envisioning one's death was not fun. I'm a very positive person though and I enjoy every day with my awesome wife.

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@bradsohns Thank you for your reply. It's good that you were able to sleep well. As you noted you may not receive an explanation of the interruption in respiration you had a few nights ago however it's good to let your team know what you experienced. I have known people with cerebellar degeneration and it makes me sad that no explanations or treatments are available. I'm with you – envisioning my own death is not fun. We all "know" that we will die one day but we are mostly able to make that an academic sort of thought without focus on the moment arriving sooner than we thought it would. This has hit me at an emotional level I never had before cancer. I'm heartened to know that was you wife is "awesome" in your words and adds to your joyful living of every day.

If you hear anything significant or helpful from your medical team that would enlighten me and other members, would you please come back and let me know?

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