Cerebellar Stroke - experience/treatment/recovery

So glad you made it. . . Twice! I’m sorry to hear about the dizziness. I also had a cerebellar stroke and it is a dizziness that for me defied physics- I’d turn my head and the world kept spinning. Thankfully, it went away with Neuro physiotherapy. I was made to walk down the street turning my head from side to side. Not fun but eventually my brain seemed to rewire.
You’ve made it to the three month mark- congratulations! Wishing you continued improvements every day and that they can find the cause.
Your tenacity and curiosity and drive are clearly serving you. Good luck!

Thank you so ,uch! Please tell me about the Neuro physiotherapy! I have not received any info about this. My PT is focused on balance. I introduced head turning and then they incorporated in. I'm really interested in ,ore info from you! Thank you. I'm so glad your dizziness is resolved! Ain't it awful!

I had my first stroke in 2014 while on Plavix. My cardio inserted a loop recorder which found paroxysmal atrial fib.-then started the evil of Eliquis! A scary task master indeed. I paused my Eliquis for 48 hours for Colonoscopy last year. I restarted it the day of my colonoscopy when I got home. Nine days later I had my second and much worse stroke!!!! On Eliquis I live in fear that I can't just go have a simple procedure without significant stroke risk. Mayo will want to do a TEE to evaluate my heart valves but- the Eliquis pause. Both my strokes were cerebral and with my last one I had difficulty speaking and swallowing. I did learn to cope with the help of rehab. But I can't smile, I drool, and I choke easily on my food. Good thing my husband knows the Heimlich maneuver. A nurse practitioner possssstulated that during the pause I formed a clot which at day 9 broke loose (appaarently they can do that.) My advise: Don't just do what the doctor says- ASK QUESTIONS, esssspecially if you have atrial fib. and heart valve disease like me. YOUDO NOT HAVE TO BE A STATISTIC! Make your doctors work with you to keep you safe from stroke.

Hello @nanober and welcome to Mayo Clinic Connect. I appreciate you sharing your experience with strokes. You have certainly have gained a lot of experience in understanding strokes and treatments.

You make a good point, when you say, "Don't just do what the doctor says- ASK QUESTIONS." This is a good example of being your advocate for your health care. I could only wish that everyone would research their problem and have a list of questions that they can bring to their appointments.

How are you feeling now? What might be changed in your medical treatment in the future?

I apologize for taking a month to reply to your request for suggestions, if any. I found out that tinnitus can increase with stress. So that's nice to know "why" when you have an increase, and it encourages stress management. I found out recently from a participant in the dizzy online support group that head and neck pains can be from anxiety! Of course fatigue increases with lack of activity (which goes with the dizziness). And it's a possible side effect of ... anxiety. All that brings us back to stress management. So even if these symptoms are mostly stroke caused, there could also be an anxiousness component added in. Plus addressing stressors is still going to improve life for anyone. This link to a psychologist tells how to counter our resistance to self-care. https://www.simplepractice.com/blog/overcoming-personal-barriers-to-self-care/. She also helps make the basic "eat right, exercise, and get enough sleep" that we all know but struggle with more doable. How to Create an Affordable, Sustainable Self-Care Plan Eliz.Scarlett, MA, 5/30/23
https://www.simplepractice.com/blog/creating-a-sustainable-self-care-plan/. Nothing I read on hyperacusis so far was applicable for my husband, but it might be for you. The fact that I got hearing aids, and now experience some types of sounds as too loud, makes me more empathetic. I adapt for him. I load the dishwasher when he's not in the kitchen; I call out a warning when I need to make noise (run the garbage disposal). I put ear plugs at his chair. Etc.
Thank you for your good wishes, v8s. My husband is sorry for his losses, and he keeps his spirits up by counting his countless blessings and maintaining his perspective (things could be worse). Thank you to those who write here about seeing improvements years after the stroke. When he said recently that maybe he won't get any better (after two years), I was able to tell him that I've read of those who do.

I had a small cerebella’s stroke about 5 or 6 years ago,I believe, and was lucky that I really didn’t have long lasting symptoms. What symptoms did you have? I have an 80 percent blockage in my carotid we are watching.

I was just at the emergency room yesterday with what they thought was a TIA none of the tests showed I had a TIA but I still have unexplained vertigo weakness difficulty walking horrible time trying to comprehend speech and I keep losing my words I also lost the ability to read a lot of documents because it is and now I have to use a magnifying glass. Best guess was I have vestibular neuritis and some seriously plugged up carotid arteries.I don’t match all of the symptoms for the vestibular neuritis but I have enough symptoms to be extremely irritating. Currently taking steroids even though a study showed they are basically ineffective. The study was from 2011 so maybe things have changed since then but I haven’t found anything yet. Anybody else have some thing like this

Had my third cerebellum infarct, similar symptoms each time, leaves me with balance issues so far…walk fine around house but not so good in long walkways like grocery store isles. Having a weird sensation in left side below rib cage, last only few seconds most a minute. Had serious muscle spasm and pain in back upper left side. Two weeks after, lasted about three days, used heat and ice and took Tylenol since they have me on blood thinner. Glad that is under control.

Did you find the cause. I have had two cerebellar strokes and I think two tias based on the symptoms. Walking wobbly is a wierd feeling, I do get nauseous alot, but I would not be sure I call it dizzy.

I’m a Cerebellar stroke survivor and have been interested in “meeting” others who have had this experience. I’m a 71 year old woman who had my stroke in 2018, two weeks after having a perfect annual physical. Six years later, I am so thankful to be alive and able to accept the new life I now have. It’s taken me years to understand this is the new me. I still pray that I’ll learn new techniques to make my vertigo better, even though I know it’s impossible to be completely normal again. I look so forward to talking to others who have experienced a cerebellar stroke.