Cerebellar Stroke - experience/treatment/recovery

I suffered a Cerebellar Stroke in Dec 2015 in my 40s and am interested in connecting with other cerebellar stroke survivors to share our experiences, testing/therapy options, struggles on the path to recovery.

@hror

Long story long- sorry… I had a left cerebellar stroke on April 10, 2018. I was 50 and athletic at the time. Awakening to extreme room spinning i fell out of bed onto the concrete floor. I called to my physician wife who helped me crawl to the bathroom. I was vomiting uncontrollably. At the time I was so disoriented that I did not realize that my left arm and leg were not working correctly. I knew my face was numb but that seemed unimportant at the time. The paramedics came and my wife and they had a phone conversation with an ER doc friend. it was presumed that I had a severe case of Benign Paroxysmal Positional Vertigo (BPPV) and the decision was made that I would remain at home. I had every single BPPV symptom. Spent a couple days at home trapped on the couch being very sick doing head manipulations intended to reposition the crystals in my vestibular system. On day three I struggled with my wifes help to get out to the car and headed to see the now available person who specializes in BPPV therapy. She looked at me for less than a minute and told me to go to the ER. I was headed there anyway to get some IV fluids- hadn't eaten or drank for 2 days. At the ER, a doctor friend administered some quick tests and advised a CAT scan. A while later while sitting on a gurney, I got to see my wife and two personal friends that are ER docks look at my imagery ( which was not visible to me).with ashen looks on there faces. My stoke had taken out the majority my left cerebellum and a very small portion if the right. It was then that I got the first ambulance ride of my life being transferred to another facility that has specializes in stroke recovery. As is the norn, I was required to remain still for a few (four) days which was utter torture. As that time wound down I did some hobbling with a walker and with assistance. I likened that walking to having had several strong drinks while walking with one high heeled shoe on- didn't really know where my left foot was. On day 6 or so I was transferred to rehab. it was here that i realized that I was one of the fortunate ones. I was 50, in good shape, and ready to try anything. Those around me were mostly older and affected in more severe ways. Over the course of several days I went from experiencing extreme nystagmus while hobbling to being able to walk somewhat effectively. I think I was the cause of great concern and challenge to the rehab staff. On day three of rehab we were supposed to take the elevator two floors up and I refused- demanding to take the stairs ( i live in a house with 32 stairs to the kitchen and i knew I needed to climb stairs to go home). My somewhat fearless PT agreed to let me do some stairs. We walked up two flights- it was not easy and I was really dizzy and my left leg was still pretty "off.". Once two flights up we turned around and my PT informed me that walking down stairs was actually a controlled fall. I looked down the stairs and experienced slot machine like vertical nystagmus. Determined, I worked my way down the stairs to my floor. I have spent a lifetime of engaging in various extreme athletics and that was the scariest thing I've ever done! While walking daily in the hospital I would pester the PT staff to go outside every time we passed a door. On day 9 in the hospital, the fearless PT (tired of listening to me) let me go outside and we walked around the block including a large set of stairs and some uneven surfaces. I can't thank her enough for having the guts to bend the rules and let me progress in that way (and get some fresh air). At about that time a really nice volunteer in his mid sixties stopped in and told me of his recovery following a cerebellar stoke he'd had at about the same age as mine. That was very reassuring. He then told me of the other two subsequent strokes he had had and how those recoveries were not as easy. WOW, that made me think. I was trying my hardest and making headway- the thought of starting that over from a greater disadvantage was pretty heavy for me at that time. I returned home and was able to begin my recovery in earnest. Lots of walks and lots of naps. I actually started mountain biking again but had a nystagmus related header crash and parked that bike. Road biking has been OK and I have done tons of that. I also have started to run once a week or so. As last fall approached I made the decision to buy a season pass at my local ski area- I 've had one every year since I was 8. I went skiing by myself the first time out and after laying into it pretty hard for 3 runs I found myself so disoriented and so nauseous that I had to gingerly snowplow down off the mountain and hobble to my car. Second time I went with my wife and daughter and got less dizzy and less nauseous The third time up I really went for it and again made myself sick and ended up laying on the asphalt in the parking lot recover enough for the trip home. Last Saturday I again went up by myself and really went for it hitting jumps and doing spinning aerial maneuvers etc. Amazingly my previous conditions had all but vanished! Skied again the next day with almost no side effects.

It has now been over seven months and I feel as if I still make improvements every day.

Must luckily, I had top of the line employer provided insurance when this thing happened and have been able to avail myself of lots of PT and a trip to the Mayo Clinic for some no BS follow up. The physician I saw at Mayo had the guts to tell me what i should and maybe should not do going forward- that was priceless. Had I followed what had seemed to be the initial advice from others to lay low and take it easy I would not have made so much progress.

I resigned from the job with the great benefits and was buying the great insurance coverage on COBRA for $800 per month just for me- not sustainable As my stellar insurance was winding down in December '18 I cornered my Chiropractor neighbor and asked him if there were specialties in chiropracty and if he thought he could help me. Miraculously he is a chiropractor who specializes in balance rehabilitation, specifically that involving the vestibular system. Over the course of a few visits he did a variety of tests of my vestibular system- some if which made me ill. The tests revealed that I still had severe nystagmus with left rotational activities. He prescribed some simple eye exercises. At first, A round of 10 simple exercises would make me ill and dizzy. Over the course of a month I seem to have gotten much better and, can now ski hard for Pete's sake.

As I improve, I now realize how much compensation I have been doing all these months. With improvement and less compensation I find that there are many small loose ends I have not been aware of. I have not yet accepted any "new normal."

BOTTOM LINE. ASK THE HARD QUESTIONS, DON'T TAKE NO FOR AN ANSWER, BE DEMANDING AND PERSISTENT WITH YOUR CARE GIVERS, BE OPEN TO TRY A VARIETY OF RECOVERY METHODS, YOUR WELL BEING AND OUTCOME DEPEND ON IT.

Others on this forum have eluded to being scared following their stroke – I understand this. I dwelled on recurrence for a while (especially after hearing the volunteer's story mentioned above) but seem to have let those concerns go over time. You only live once and you owe it to yourself (and the ones you love) to put aside your fears and do all you can do. My great concern going forward is the out of pocket costs of ongoing and future medical needs fo me and my family. Those of us who have had a stroke are now the poster children for coverage denial if pre existing conditions become exclusionary.

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So awesome to read this!

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@hror

Long story long- sorry… I had a left cerebellar stroke on April 10, 2018. I was 50 and athletic at the time. Awakening to extreme room spinning i fell out of bed onto the concrete floor. I called to my physician wife who helped me crawl to the bathroom. I was vomiting uncontrollably. At the time I was so disoriented that I did not realize that my left arm and leg were not working correctly. I knew my face was numb but that seemed unimportant at the time. The paramedics came and my wife and they had a phone conversation with an ER doc friend. it was presumed that I had a severe case of Benign Paroxysmal Positional Vertigo (BPPV) and the decision was made that I would remain at home. I had every single BPPV symptom. Spent a couple days at home trapped on the couch being very sick doing head manipulations intended to reposition the crystals in my vestibular system. On day three I struggled with my wifes help to get out to the car and headed to see the now available person who specializes in BPPV therapy. She looked at me for less than a minute and told me to go to the ER. I was headed there anyway to get some IV fluids- hadn't eaten or drank for 2 days. At the ER, a doctor friend administered some quick tests and advised a CAT scan. A while later while sitting on a gurney, I got to see my wife and two personal friends that are ER docks look at my imagery ( which was not visible to me).with ashen looks on there faces. My stoke had taken out the majority my left cerebellum and a very small portion if the right. It was then that I got the first ambulance ride of my life being transferred to another facility that has specializes in stroke recovery. As is the norn, I was required to remain still for a few (four) days which was utter torture. As that time wound down I did some hobbling with a walker and with assistance. I likened that walking to having had several strong drinks while walking with one high heeled shoe on- didn't really know where my left foot was. On day 6 or so I was transferred to rehab. it was here that i realized that I was one of the fortunate ones. I was 50, in good shape, and ready to try anything. Those around me were mostly older and affected in more severe ways. Over the course of several days I went from experiencing extreme nystagmus while hobbling to being able to walk somewhat effectively. I think I was the cause of great concern and challenge to the rehab staff. On day three of rehab we were supposed to take the elevator two floors up and I refused- demanding to take the stairs ( i live in a house with 32 stairs to the kitchen and i knew I needed to climb stairs to go home). My somewhat fearless PT agreed to let me do some stairs. We walked up two flights- it was not easy and I was really dizzy and my left leg was still pretty "off.". Once two flights up we turned around and my PT informed me that walking down stairs was actually a controlled fall. I looked down the stairs and experienced slot machine like vertical nystagmus. Determined, I worked my way down the stairs to my floor. I have spent a lifetime of engaging in various extreme athletics and that was the scariest thing I've ever done! While walking daily in the hospital I would pester the PT staff to go outside every time we passed a door. On day 9 in the hospital, the fearless PT (tired of listening to me) let me go outside and we walked around the block including a large set of stairs and some uneven surfaces. I can't thank her enough for having the guts to bend the rules and let me progress in that way (and get some fresh air). At about that time a really nice volunteer in his mid sixties stopped in and told me of his recovery following a cerebellar stoke he'd had at about the same age as mine. That was very reassuring. He then told me of the other two subsequent strokes he had had and how those recoveries were not as easy. WOW, that made me think. I was trying my hardest and making headway- the thought of starting that over from a greater disadvantage was pretty heavy for me at that time. I returned home and was able to begin my recovery in earnest. Lots of walks and lots of naps. I actually started mountain biking again but had a nystagmus related header crash and parked that bike. Road biking has been OK and I have done tons of that. I also have started to run once a week or so. As last fall approached I made the decision to buy a season pass at my local ski area- I 've had one every year since I was 8. I went skiing by myself the first time out and after laying into it pretty hard for 3 runs I found myself so disoriented and so nauseous that I had to gingerly snowplow down off the mountain and hobble to my car. Second time I went with my wife and daughter and got less dizzy and less nauseous The third time up I really went for it and again made myself sick and ended up laying on the asphalt in the parking lot recover enough for the trip home. Last Saturday I again went up by myself and really went for it hitting jumps and doing spinning aerial maneuvers etc. Amazingly my previous conditions had all but vanished! Skied again the next day with almost no side effects.

It has now been over seven months and I feel as if I still make improvements every day.

Must luckily, I had top of the line employer provided insurance when this thing happened and have been able to avail myself of lots of PT and a trip to the Mayo Clinic for some no BS follow up. The physician I saw at Mayo had the guts to tell me what i should and maybe should not do going forward- that was priceless. Had I followed what had seemed to be the initial advice from others to lay low and take it easy I would not have made so much progress.

I resigned from the job with the great benefits and was buying the great insurance coverage on COBRA for $800 per month just for me- not sustainable As my stellar insurance was winding down in December '18 I cornered my Chiropractor neighbor and asked him if there were specialties in chiropracty and if he thought he could help me. Miraculously he is a chiropractor who specializes in balance rehabilitation, specifically that involving the vestibular system. Over the course of a few visits he did a variety of tests of my vestibular system- some if which made me ill. The tests revealed that I still had severe nystagmus with left rotational activities. He prescribed some simple eye exercises. At first, A round of 10 simple exercises would make me ill and dizzy. Over the course of a month I seem to have gotten much better and, can now ski hard for Pete's sake.

As I improve, I now realize how much compensation I have been doing all these months. With improvement and less compensation I find that there are many small loose ends I have not been aware of. I have not yet accepted any "new normal."

BOTTOM LINE. ASK THE HARD QUESTIONS, DON'T TAKE NO FOR AN ANSWER, BE DEMANDING AND PERSISTENT WITH YOUR CARE GIVERS, BE OPEN TO TRY A VARIETY OF RECOVERY METHODS, YOUR WELL BEING AND OUTCOME DEPEND ON IT.

Others on this forum have eluded to being scared following their stroke – I understand this. I dwelled on recurrence for a while (especially after hearing the volunteer's story mentioned above) but seem to have let those concerns go over time. You only live once and you owe it to yourself (and the ones you love) to put aside your fears and do all you can do. My great concern going forward is the out of pocket costs of ongoing and future medical needs fo me and my family. Those of us who have had a stroke are now the poster children for coverage denial if pre existing conditions become exclusionary.

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Welcome to Mayo Connect, @hror, and thank you for sharing your remarkable story! It has certainly inspired me and I'm sure others will feel the same way. I especially like your acknowledging the fears you had and making a decision to put them aside and "do all you can."
That is an important message for us all.
How important do you think attitude is when dealing with a catastrophic event like yours?

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Hello everyone, My husband and I are very new to this… he is 56yrs old and in great health but thursday at 1am he ready to punch the time clock at work… he had felt absolutely fine… when he stood up he felt week on his right side and nauseated my son in helped him to the car but he could hardly walk so he took him to er … by the time he got there he could not open his eyes or even move without throwing up…his eyes would not focus they took his vitals and said it was vertigo and that his vitals were fine… they were very busy so they parked us in a room… a couple hours later we saw the doctor he took a preliminary Ct scan and an MRI and checked his heart….they were still calling it vertigo but since nothing was helping him to stop throwing up they said they would admit him and preform ultrasounds on his neck and heart and sent him for another more detailed MRI… the next day they told us it had been a cerebral stroke… we are lucky..his left side is weak, he has problems writing and he talks with a very slight mumble if he is sitting in bed talking to you it is very difficult to tell that anything is wrong… However he has no balance and at this time cannot even use the walker…this is very new..but we have no insurance so they are talking about sending him home as soon as I can get a ramp for the home… they also said we would get OT and PT visits at least once a week… we know we are lucky but at this point we are so overwhelmed and lost in the whole process…any advice is welcome

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Hi @4santajoe and welcome to Connect. It must be difficult to see you husband like this.

I wanted to introduce you to fellow Connect members @hror @hammondm99 and @supra865 as they have experience with cerebellar strokes and may be able to offer you support.

Back to your husband @4santajoe have they told you what the OT and PT will consist of?

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@4santajoe

Hello everyone, My husband and I are very new to this… he is 56yrs old and in great health but thursday at 1am he ready to punch the time clock at work… he had felt absolutely fine… when he stood up he felt week on his right side and nauseated my son in helped him to the car but he could hardly walk so he took him to er … by the time he got there he could not open his eyes or even move without throwing up…his eyes would not focus they took his vitals and said it was vertigo and that his vitals were fine… they were very busy so they parked us in a room… a couple hours later we saw the doctor he took a preliminary Ct scan and an MRI and checked his heart….they were still calling it vertigo but since nothing was helping him to stop throwing up they said they would admit him and preform ultrasounds on his neck and heart and sent him for another more detailed MRI… the next day they told us it had been a cerebral stroke… we are lucky..his left side is weak, he has problems writing and he talks with a very slight mumble if he is sitting in bed talking to you it is very difficult to tell that anything is wrong… However he has no balance and at this time cannot even use the walker…this is very new..but we have no insurance so they are talking about sending him home as soon as I can get a ramp for the home… they also said we would get OT and PT visits at least once a week… we know we are lucky but at this point we are so overwhelmed and lost in the whole process…any advice is welcome

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Hi @4santajoe. The symptoms you mention that resulted in your husband going to the hospital were very similar to mine. The only thing I can add is I had a dull headache in the back of my head, which when I explained that along with my other symptoms to the admissions nurse, they wasted no time getting me in for an MRI then shipped me out to a hospital better suited to deal with strokes. The unfortunate part is I did not go to the hospital until the next day. My right side was also weak, I couldn't write, brush my teeth well, comb my hair well, feed myself using my right hand, all of that fun stuff you take for granted. I did not have bad balance issues that kept me from getting around on my own though.Coming down stairs were tough and I would bump into the walls every now and then, had a tendency to drift into anyone walking beside me for a little while. It sounds like it has only been a few days, so hopefully his balance will improve in time. The other stuff for me came back (and in some cases, is still coming back) with a lot of in home rehab, Everyone one is different, but for me, it took the drive to do the rehab daily, a lot of time and a lot of patience. I focused on a few things at a time that I had difficulty with and kept working until they got easy, then moved on to the next things. I would get discouraged and angry at times, but I found that if I focused on the progress made, all was good. It's been 13 months for me and I find myself still working to get better (i am tapping my right foot to a beat as I type, still a little tough for me to do, but better than what I could do 6 months ago!). There are a lot of good exercise recommendations for stroke recovery online that may help. Feel free to reach out if you have questions! It helped me quite a bit being able to ask questions on things I experienced and how people may have gotten through certain challenges in this forum.

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Hi. I just turned 59 in December 2018 and had a ischemic stroke in the cerabellum on Friday February 8, 2019. This is my 2nd day back home. I feel blessed in that I seem to be recovering well. My double vision is almost cleared up and while I am on a walker- they don't think I will be for long. I will be starting Occupational Therapy and Physical Therapy soon. I did not have typical symptoms. I had been in my PCP's office twice that week and he was leaning toward inner ear pressure (the neurologist felt he understood why the PCP was leaning this way). In early October 2018 I was taken to the ER with vertigo type symptoms. They did an MRI and said the nerve in my left inner ear was inflamed. Now I wonder if it was just the onset of the stroke. I've been reading about strokes today and feel overwhelmed with the blessings I have received in my recovery journey as it could have been far worse. I exercise regurlary for 12+ years, eat right and for the most part I am already doing all the things we need to do. My blood pressure is really low (naturally) I don't have high cholesteroll but I'm on meds now because it is at the borderline. I'm now taking baby aspirin. But this really worries me as there are not drastic things I need to change to prevent a future occurrence.

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@gmike

My husband just had a cerebellar stroke in February. He is still struggling with an upset stomach.

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I just got home from the hospital from a cerebellar stroke on Friday and I noticed my stomach was queasy and I feel sort of light headed but not dizzy. I'm scared and not sure what is over reacting and what is normal.

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@bermuda

I had a PFO closure with an Amplatzer Occuluder device 3 weeks ago and I am wondering if anyone has had any post procedure symptons/concerns. I had a cerebellar stroke 17 months ago and post they found the hole. The procedure is to help cut down my risk of a second stroke – I am 63 and had a pretty good recovery but still getting a little better all the time.

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Hi @bermuda just seen your post. Well after 7 months managed to see cardiologist and has suggested Amplatzer. He said that he has done hundreds in the UK since 2002 and there have been no serious complications. How are you so far? How is your recovery going?

I was considering noble stitch device as an alternative but can't find many people that have had it done.

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Hi @trkuk – I had an Amplatzer device implanted. It was an easy procedure at John Hopkins in Baltimore and the doc who did mine had done more than a 1000. He chose the device for me based on his experience. I had a bubble saline test done at 3 months and it still is not 100 percent healed but he said it would take 3-6 months for the heart tissue to cover the device . I had one 2 minute incident of aFib which is experienced by only about 2-3 % of patients – I also have a Linq monitor for my heart rate which picked it up. Nothing since. Would I do it again – absolutely. My cardiologist said that he believes that it reduces, in his cases, the risk of a second stroke by 70% and those are very good odds for me. I am about to have major spine surgery and both the neurologist and neurosurgeon are very pleased that I had the procedure pre op. Hope this helps.

Liked by yvonne119th

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I am 45 years old. I had a cerebellar stroke in September of 2018. Did u recover from your stroke?

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@rldawg

My husband, in his early 50's, had his stroke in September. I remember also being extremely fearful of a reoccurance.

I had also posted here asking how other survivors have lived or changes they have made since then, to prevent another stroke from happening. My husband has changed his diet and now works out more often.

He was told that the risk of a reoccurance is highest in the first month after the stroke, and then still elevated for the first year after. So we are still in the high risk zone.
i understand your fear, and it's normal to be scared. It's also common to feel depressed after a stroke. You came so close to death, after all.

For us it was a huge wake up call. I'm relieved every morning to know that my husband is alive and well. Every day with him is a precious gift, that came so close to have been taken away from me on the night of his stroke. He's made some other changes to his life as well, like spending more time with our child and being more assertive about what he wants. It's like we recognise that tomorrow isn't guaranteed and so we live more fully in the present.

A level of anxiety remains, of course, and I have started seeing a therapist myself for stress disorder. My husband himself is more or less back to work, back to normal. Cause of stroke is still unknown. I researched about strokes and read stories from survivors. There are good, evidence-based tips for preventing strokes out there.

The tests you have to undergo are unpleasant but should help to find the cause of the stroke. I empathise! I find waking up and counting my blessings, as well as going to bed with a grateful heart helps a lot.

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I am 45 years old. I had a cerebellar stroke in September of

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@yvonne119th

I am 45 years old. I had a cerebellar stroke in September of

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2018. Im blessed to not paralyzed or facial dropping. My left side is my weak side. I have my balance and walking better on 5 months. Thank God

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@yvonne119th

I am 45 years old. I had a cerebellar stroke in September of 2018. Did u recover from your stroke?

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Hi Yvonne! I’m Placy 50 years old, I had stroke 9/30/2018

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@placyhall

Hi Yvonne! I’m Placy 50 years old, I had stroke 9/30/2018

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I feel a bit better but my dr, told me a will take time to get better, TG now I can walk slowly, help my husband with cooking, laundry I get in better, only problem is my insomnia is bad, and I have very bad pain in my joints n muscles, get tired very easy, I can not drive or be on my own

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@strokesurvivordynamo

At 48 and relatively healthy, I didn’t fit the typical stroke profile. I have great cholesterol, am a non-smoker, a casual drinker, I don’t have uncontrolled high blood pressure, I’m not a diabetic, and have no family history of strokes.

If you’re like me, you’ve read the Heart & Stroke material and watched the ads on TV. We’ve been trained that if you think someone is having a stroke, act FAST and do the following:

Face – is it dropping?
Arms – can you raise them?
Speech – is it slurred or jumbled?
Time – to call 911 right away!

My daughter thought I was having a stroke when it was happening and administered the FAST test – I passed it. I could do all of these things! That test works for the majority of strokes but not all. A cerebellar stroke, like mine, accounts for only 3% of strokes. MY warning signs didn’t fit the profile.

Instead I had the Three Vs – Violent Headache, Vertigo, Vomitting. Any of these signs coming on suddenly without explanation, alone or especially together, are enough to call 911. Even if your symptoms go away, you need to see medical treatment as you could have had a TIA (mini stroke).

For every minute delay in treating a stroke, the average patient loses 1.9 million brain cells. That is terrifying! It was 4 hours before an ambulance was called to my home the night I had my stroke.

I had felt “off” two days before and paid my Doctor a visit because I felt so strange it worried me. I described it as “feeling like Alice in Wonderland and I didn’t belong”. I now know that sensation is called disassociation and is a sign of a cerebellar event.

My Doctor couldn’t find anything wrong and said maybe I was fighting a virus. So when I suffered my stroke, my family thought I had a bug and checked on me every 30 minutes as I continues to battle the Three Vs. Not until I collapsed on the bathroom floor did they fear the worst and dial 911.

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Your symptoms of cerebellar stroke are similar to mine, Vertigo, vomiting and double vision. Happened about 18 months ago. I'm 71 and feel depressed because I'm afraid I have brain damage. Got to the hospital about 2 or 3 hours later, stayed 8 days with multiple MRI's, etc. Now just trying to stay connected. Keep your chin up. I hope you are feeling better soon.

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