Cerebellar stroke experience, treatment, recovery

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.

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

Need to review best medication and supplements

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.

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.

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..

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.

No one should ever stop Effexor cold turkey! My son did that and we thought he was going to commit suicide so we brought him back home to live. He was being treated for depression when he was actually bi-polar and needed a totally different treatment! All SSRIs have the same bad effects if you try to go off old turkey. It took me over 3 months or more to titrate down off Celexa to finally get rid of the zaps and the heavy drenching sweat from my head. I can understand going cold turkey can cause a stroke, especially in older women. That might be one of the reasons I had a stroke last year, which I survived. Since ditching the anti-depressants I can laugh and cry more easily now and I love it! Antidepressants can make us numb to emotions. I spent almost 50 years on some kind over the years. Never again!

I had vertigo and double vision for 8 months leading up to a basilar artery occlusion of 100% last September 2024. I should have died. After the stroke all symptoms went away! After 4 days in the ICU they sent me home with only slight balance issues and fatigue remaining but I'm almost 75 so that's sort of normal anyway for someone my age. The kind of stroke I had is extremely rare and usually kills 85 to 90% of those who experience it. I believe there is a God who loves and is aware of us and He knows the outcomes; I believe God wants to keep me around for a while longer for some unknown reason so I trust in Him. Before I had the stroke I was having almost daily episodes of double vision and/or spinning sensations. I had a full workup by an ENT doctor thinking it might be my ears or something related. It wasn't. I passed with flying colors so we eliminated that as a possible reason for the double vision and vertigo. Your dizziness is likely from the stroke and I wouldn't worry about it. As we age the symptoms can get worse. Watch some U-Tube videos; they might help you understand.

My doctor gave me a prescription for Lorazepam 1 mg when the anxiety gets too much for me. It helps with nausea as much as Zofran did for me. A few months after my basilar artery stroke in Sept 2024 I managed to get shingles then a difficult bronchial infection and lastly I have developed rheumatoid arthritis. So now I get to be on steroids for who knows how long. I'm certain the stroke had something to do with facilitating the later illnesses, all immune deficiency related. I can't imagine having a busy lifestyle like yours; you must be a lot younger than me! Are you putting too much stress on yourself? Maybe it's time for you to slow down a little? A stroke is nothing to be casual about because one stroke may lead to another one someday if you don't take precautions now. Strokes don't seem to care about your age. Just speaking from experience.