Cerebellar stroke experience, treatment, recovery

I had a cerebellar stroke several years ago and had some lingering but acceptable balance issues. It seems that in the last six to nine months I have been having increasing dizziness most of the time. I have had a recent CT and have been to an ENT, but with no suggestion as to what is causing the change. I have also been told by my GP's nurse that ENT's no longer treat vertigo-related issues. I think my dizziness may be related to sinus issues, but the CT did not find any sinus problems.

IMPORTANT RELIEF FOR NAUSEA AND DISORIENTATION (at least in my case)- I had a cerebellar stroke in 2018 losing my left cerrubellum and have, after lots of initial rehab, adaptation and such, had a return to a faily normal existence. There are some activities and motions that make me feel nauseous and disoriented and cause me to get "spun up" sometimes and feel "off" for a day or so. I have discovered that taking Zofran (ondansetron) allows me to do intense activities without getting dizzy, nauseous or disoriented. I can ski aggressively and do g force inducing turns and spinning aerials which would previously render me so nauseous and disoriented that I would have to lay down for a period of time- on one occasion in the wet ski area parking lot. In another plug for Zofran, I recently had the opportunity to deliver a 50 foot sailboat 1200 miles in the Pacific from Washington to Southern Californa in what turned out to be extremly rough conditions- like 20 foot waves. When preparing for the trip I was concerned about becoming the seasick crew member that the captain would have to drop off somewhere on the Oregon Coast leaving the boat understaffed. I took Zofran in a moderate dose every 12 hours for 2 weeks straight during the journey and never got seasick! I even read a book while on the boat which is something I would never be able to do under any conditions stroke or not. Zofran is an anti nausea medicine often used by persons undergoing chemotherapy. I'm no pharmacologist but I am convinced the stuff must have some cancelling effect on the signals between ones eyes, vestibular system and cerebelum. Weirdly, the only side effect I have experienced taking Zofran (after intense skiing) is eye soreness. My physican wife has told me that I have mild nystagmus when experiencing this eye discomfort.

Fortunate I am..

Sally12345: Since you also mention "pains in my head," I'll further comment that a brother mentioned pain could be from brain healing. The neurology headache specialist said the pain on top isn't from headache, so she prescribed gabapentin for nerve damage pain. For the back of head and neck pains (muscle tension) she prescribed Baclafen. Both seem to bring temporary relief. I told her that there is a nearby clinic offering PEMF (pulsed electromagnetic field) therapy and infrared therapy. She said, "They work, if you have the money" (not covered by insurance). Then she suggested Cefaly--an electrode, similar to a TENS Unit (which is never to be used on the head), but for migraine. For Chris, this simply masks the pain while its worn--which is better than nothing. A pain management doctor said acupuncture is definitely worth trying (endorsed for headache by the NIH, WHO, and Cleveland Clinic). If anyone has had success w/ it, PEMF or light therapy, please let me know. (Chris has tried four other pills and four types of injections--all for migraine, which the second opinion neurologist said Chris certainly does not have.) As I searched online for relief for my husband, I discovered that there are "headache specialists" and multidisciplinary pain management programs. Then I googled the closest locations. Both are at the medical center we use--yet the vascular/stroke neurologist there didn't tell us! I asked him for referrals.

Hi, I suffered strokes , diagnosed in 2020 with celebrity vascular small vessel disease. I take the meds. Prescribed. Blood thinner , high Blood pressure pill, statin,depression . Still get pains in my head, vertigo sometimes worse than others. Off balance gait..there is no answers to this that I have found except meds. Life changes and hope.

Need to review best medication and supplements

Does he have an aura before the headache so he knows its coming?

My husband had a cerebellar stroke 3 yrs ago come June. He didn't have the classic FAST symptoms. It was two weeks until he got the Dx (would have been longer if I hadn't pushed past the PCP) and had more damage in the meantime. The vertigo has worsened. The neurologists agreed that FND/functional neurological disorder (the brain sending and receiving messages incorrectly) likely explains why the symptoms are greater than the brain damage accounts for. I've been reading online for almost three years. This dx is our first ray of hope. Therapy has begun, but it should've started sooner--and he's not convinced it's the way to go. But he agrees the advice to use muscle relaxation and deep breathing does help. One neurologist agreed with my comment that there could be PPPD/persistent postural perceptional dizziness present. The psychologist said that therapy for FND and 3PD are similar. At the final/one-year appt, the vascular neurologist only said he was making a referral to the psych dept. He didn't say why, so we assumed it was for coping strategies or depression (of which there are no symptoms). But there are daily head pains--with no relief from the headache neurologist's many prescriptions and injections. So again, these are likely due to FND. I share these in case it can help anyone else get relief sooner than later.

I try so very hard to find answers to my problems. I’m sure that my mental state has been a big problem, but after these past 6 years, I’m truly ready to make myself exercise more and get back to the way I felt years ago while doing daily physical therapy. I have been guilty of feeling sorry for myself and instead of getting up and making myself move, I often became a couch potato. Like I told you before, I’m much older than you, so I’m happy to share one very important piece of advice. Always remember things could be worse. Sounds to me like no matter how difficult a situation is, physical therapy can make a big difference. I got outside today and walked 7500 steps... with my cane. I’m exhausted tonight but my husband is so proud of me. He says I need to do this daily. He says he could see more optimism in my face today. I’ll admit I am proud of myself. I plan to go to a big grocery store tomorrow and push a cart until I get all of my steps. I’m willing to make a pact to try harder. I also looked at Vestibular exercises online today. I did try those back in 2018, but my vertigo was so bad then, it just increased my nausea. I’ll take another look at it and maybe it will be a possibility. Thanks for your suggestion. Let’s keep pushing forward.

I too found that when I stopped doing physical therapy regularly, things seemed to go backwards…😒 It’s like everything else for me, I get motivated, then I fall off when I don’t see immediate results! I’m learning the hard way that this stroke thing doesn’t work that way. I’m sure you, like me, beat yourself up for stopping the regular PT. It feels like I worked SO SO hard for that gain and for it to be seemingly for nothing is heartbreaking! We’ll make a pact to start doing something- ANYTHING every single day and not to quit!

Regarding your dizziness/vertigo- I’m sure you’ve tried all the typical things- meclizine, scopolamine patch etc. Those seemed to make me worse! One thing that did eventually help me was vestibular therapy. Not only maneuvers but also eye tracking exercises and techniques etc. Something you may look into. If you’re like me, you’re constantly searching for anything.

I think it is wonderful that your dizziness/vertigo isn’t as bad as it was in the beginning. I’m sure it’s not perfect, but just the fact that it’s not getting worse is very important. I wish I could say that. I think I’ve made a huge mistake by stopping my physical therapy. I took therapy for about 6 months after I was discharged from my rehab facility. After that I stopped doing my exercises because I thought I could just walk with my cane, or swim, and that would be enough. I think I was wrong. I need upper body strength and I need to work on endurance. I’m a little (5 years) late, but I’m going to get back to my exercises that my therapist gave me after I had the stroke. I thought they were too easy, but they gave me a whole body workout. Leg lifts, side steps, marching, arm lifts, getting out of a chair, reaching, (10 repeats). Anyway, I’d give anything to be able to say my dizziness is better. I hope I can get back to feeling as well as I did while doing my daily exercises years ago. I’m praying all of us going through this will find more miracles.