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.

@ian7811

Hello trkuk, tried first one mid afternoon yesterday, by 10 at night I was still nauseous, I could feel shaking in my body and I was a little concerned. Not sure if I want to try a second tablet yet. I have to admit despite being 6 feet tall and about 15 stones I haven’t been doing well on changing medication since the stroke 6 months. Even tablets I’ve taken in the past like bendroflumethiazide for HBP caused a reaction. My goodness I took this for 20 years so weird I couldn’t take it now. I couldn’t stomach the alternative to clopidogrel, I think it was dipyridamole and aspirin. When I trialled the latter combo I had to take to bed two hours later, shaking, prickly skin and increased nausea. Most unpleasant and Dr stopped them saying I had experienced some known side effects. Seems size is not an issue when it comes to side effects. I’ll see if I can face up to another cyclizine today. Maybe last nights feeling was an isolated event and nothing to do with the drug. Please don’t let me put anyone off their own trial, I see it’s prescribed for children over a certain age for motion sickness so think its usually ok. If I can face up to another one I’ll let you know but just to reiterate, the unpleasant feeling at bed time may just have been me rather than the drug.

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I thought I’d just give everyone a little update. Had a bout of nausea, shaking and feeling very much like some of the symptoms I experienced whilst having the stroke. It was so bad I had a night in the local hospital and consultant there started thinking’s it’s due to acid reflux. Well, I’ve had this for many years but never these symptoms so it’s getting checked out in the near future. Certainly, some acid reflux liquid when troubled has made a big improvement. My cerebellar stroke was deemed to be cryptogenic and I’ve been waiting for a PFO closure. Well, I had the procedure two weeks ago and they also found an ASD as well. Surgeon says he covered both holes with the device so I’m hopeful it’ll protect me from future blood clots. It’s an amazing op I was knocked out, left with two little puncture marks in my groin, one for the device insertion and the other for the scanning device. Ordinarily, this would have been placed down my throat but they couldn’t get it down due to what they think was acid reflux causing gullet to swell. I’m feeling good, headaches have reduced, no pain from heart whatsoever and, all in all, I’m happy that I was given the chance of having this operation. I haven’t seen a great deal written on the site about PFO closure but I think everyone with a cryptogenic stroke needs to ensure that the need for this protective device is checked out by their doctors . Anyway, that’s the latest everyone, I hope you’re all continuing to make good progress.

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It's been a while since I posted, just started noticing something not long ago and wanted to see if anyone else is experiencing the same. I had my Cerebellar Infarct on January 6th, 2018. I have worked through many of the challenges you go through to get back to as normal of a life as possible, pretty much have gotten to the point where I am not thinking about the effects, worrying about having another stroke, etc. I have noticed over the past month or so that my right thigh has a spot about 1 inch wide pretty much the length of my thigh that is a little numb. My right side was affected by the stroke, so I am assuming it is related. Anyone have a similar issue?

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@hammondm99

It's been a while since I posted, just started noticing something not long ago and wanted to see if anyone else is experiencing the same. I had my Cerebellar Infarct on January 6th, 2018. I have worked through many of the challenges you go through to get back to as normal of a life as possible, pretty much have gotten to the point where I am not thinking about the effects, worrying about having another stroke, etc. I have noticed over the past month or so that my right thigh has a spot about 1 inch wide pretty much the length of my thigh that is a little numb. My right side was affected by the stroke, so I am assuming it is related. Anyone have a similar issue?

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Do you know what caused your stroke? I had my stroke effected right also on May 17, 2015 and don't know why. In 2017, I started having my right foot and ankle go numb or asleep and my doctor did a vein ultrasound where was found my veins want to spider had form new routes. (varicose veins) I am too young58 and can't have surgery for it because insurance says it is to look pretty so have to prove it by wearing compression socks. It helped. Now they are getting tight for me to wear and I have area around my groin that a cauterized star closer was put that hurts almost all time. Am to see dr. in two weeks about this and I am thinking I should be able to have the surgery for veins and get rid of these socks. They are a life saver for work and numbness but a pain to use.

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@hammondm99

It's been a while since I posted, just started noticing something not long ago and wanted to see if anyone else is experiencing the same. I had my Cerebellar Infarct on January 6th, 2018. I have worked through many of the challenges you go through to get back to as normal of a life as possible, pretty much have gotten to the point where I am not thinking about the effects, worrying about having another stroke, etc. I have noticed over the past month or so that my right thigh has a spot about 1 inch wide pretty much the length of my thigh that is a little numb. My right side was affected by the stroke, so I am assuming it is related. Anyone have a similar issue?

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Yes, I have numb spots. Can’t remember where this minute.

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@leslon

Do you know what caused your stroke? I had my stroke effected right also on May 17, 2015 and don't know why. In 2017, I started having my right foot and ankle go numb or asleep and my doctor did a vein ultrasound where was found my veins want to spider had form new routes. (varicose veins) I am too young58 and can't have surgery for it because insurance says it is to look pretty so have to prove it by wearing compression socks. It helped. Now they are getting tight for me to wear and I have area around my groin that a cauterized star closer was put that hurts almost all time. Am to see dr. in two weeks about this and I am thinking I should be able to have the surgery for veins and get rid of these socks. They are a life saver for work and numbness but a pain to use.

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Thanks for the feedback. My numbness is not severe and it seems to come and go, or I just don't notice it most of the time. I am very active and notice it more when I am moving around when wearing jeans.

To answer your question, my cardiologist thinks it may have been Afib that caused my stroke. I had a barrage of tests for the months following my stroke to rule out potential causes and they found nothing. I do have PACs from time to time, they think that may have started the whole Afib episode. I have a Linq device inserted and it hasn't picked up on anything since being implanted a couple days after my stroke. The cardiologist put me on Metoprolol and the PAC episodes are few and far between and last less than 30 seconds, so I guess that's good.

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@hammondm99

Thanks for the feedback. My numbness is not severe and it seems to come and go, or I just don't notice it most of the time. I am very active and notice it more when I am moving around when wearing jeans.

To answer your question, my cardiologist thinks it may have been Afib that caused my stroke. I had a barrage of tests for the months following my stroke to rule out potential causes and they found nothing. I do have PACs from time to time, they think that may have started the whole Afib episode. I have a Linq device inserted and it hasn't picked up on anything since being implanted a couple days after my stroke. The cardiologist put me on Metoprolol and the PAC episodes are few and far between and last less than 30 seconds, so I guess that's good.

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Hugs and Prayers for you. It sounds like you have your doctors help which would take away your stress. My doctor's are creating my stress -or maybe it is the nurses. Things seem different in office verses over phone.

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@leslon

Hugs and Prayers for you. It sounds like you have your doctors help which would take away your stress. My doctor's are creating my stress -or maybe it is the nurses. Things seem different in office verses over phone.

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My cardiologist is the best. Always approached the process as eliminating the things that didn't cause the stroke, never approached it from the point of trying to find the cause. Although I was anxious not knowing the definitive cause, I know the 100 things that didn't cause it, which made me realize I am a healthy guy otherwise. It took a while, but I got to the point where I would leave each appointment excited that something else was ruled out.

The whole stroke thing made life pretty difficult for a quite a while. I had to re-learn a lot of things that were basic and it took more than a year to get to the point where I felt like I made good progress. Still making progress today, if I find something difficult, I focus on it until it becomes not as difficult any more. I am (re) building my porch, realized yesterday that I climb down the ladder starting with my right foot each time then lowering my left foot to the same stair. I started to work yesterday on right foot on a stair, left foot on the stair below that one, etc. I expect I won't have to think about that in another couple of weeks, will become 2nd nature.

Couple things that I started to realize a few months back. Although the stroke brought on a lot of challenges and a new norm, in my case, it is not terminal, just inconvenient, took me a lot of work to get some normalcy back. The other thing, I had someone that went through something a lot more serious and stressful say to me (a line from the Shawshank Redemption movie), "You can get busy living or you can get busy dying." That kind of hit home and I decided to get busy living. You never know what tomorrow holds, enjoy the day. I understand strokes affect each person differently, some have more challenges than I, that is my story though.

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@barbarajean100

I am 49 and at 47 I had my first cerebellar stroke. I am interested if anyone has similar issues. I have lots of issues, and will share if you want, but I have always had speech difficulties. The weird issue with me is that first thing in the morning or after a quick nap I have no speech issues, and sound like normal me, but as soon as I start to do something or focus or get anxious in any way or overwhelmed or multitask or focus on something, my speech will go "off" and I become so bad I can't say a word or my tongue and jaws will not make the words and I sound stupid. They are calling it dysarthric speech. It just doesn't make sense. I am so blessed so I hate to complain but I have wanted to reach out for a long time and just didn't. Can anyone help?

Blessings
Barbara

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Also the stroke was right cerebellar.

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I am 49 and at 47 I had my first cerebellar stroke. I am interested if anyone has similar issues. I have lots of issues, and will share if you want, but I have always had speech difficulties. The weird issue with me is that first thing in the morning or after a quick nap I have no speech issues, and sound like normal me, but as soon as I start to do something or focus or get anxious in any way or overwhelmed or multitask or focus on something, my speech will go "off" and I become so bad I can't say a word or my tongue and jaws will not make the words and I sound stupid. They are calling it dysarthric speech. It just doesn't make sense. I am so blessed so I hate to complain but I have wanted to reach out for a long time and just didn't. Can anyone help?

Blessings
Barbara

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@barbarajean100

I am 49 and at 47 I had my first cerebellar stroke. I am interested if anyone has similar issues. I have lots of issues, and will share if you want, but I have always had speech difficulties. The weird issue with me is that first thing in the morning or after a quick nap I have no speech issues, and sound like normal me, but as soon as I start to do something or focus or get anxious in any way or overwhelmed or multitask or focus on something, my speech will go "off" and I become so bad I can't say a word or my tongue and jaws will not make the words and I sound stupid. They are calling it dysarthric speech. It just doesn't make sense. I am so blessed so I hate to complain but I have wanted to reach out for a long time and just didn't. Can anyone help?

Blessings
Barbara

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Hi Barbara. I had a the same type of stroke a couple of years ago. I experience similar challenges to this day with my speech when things get mentally tough at work. It never seems to happen outside of work. I don't think my speech challenges get as bad as yours though by the sounds of your post. My job in general requires a lot of problem solving and by Thursday, I am a bit fried and find I have trouble pronouncing certain words. I can get most words out, just a few syllables I struggle with mostly. The more I think about getting the words out when I talk, the worse it seems to get. I don't seem to have these challenges when I am away from the work environment.

BTW, don't feel like your complaining, your in the right place to explain what you are feeling and ask questions!

Liked by barbarajean100

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@leslon

Hugs and Prayers for you. It sounds like you have your doctors help which would take away your stress. My doctor's are creating my stress -or maybe it is the nurses. Things seem different in office verses over phone.

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Interesting observation. I am an old RN. Care to elaborate on that? Maybe I can offer a solution.
Bright Wings

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@hammondm99

My cardiologist is the best. Always approached the process as eliminating the things that didn't cause the stroke, never approached it from the point of trying to find the cause. Although I was anxious not knowing the definitive cause, I know the 100 things that didn't cause it, which made me realize I am a healthy guy otherwise. It took a while, but I got to the point where I would leave each appointment excited that something else was ruled out.

The whole stroke thing made life pretty difficult for a quite a while. I had to re-learn a lot of things that were basic and it took more than a year to get to the point where I felt like I made good progress. Still making progress today, if I find something difficult, I focus on it until it becomes not as difficult any more. I am (re) building my porch, realized yesterday that I climb down the ladder starting with my right foot each time then lowering my left foot to the same stair. I started to work yesterday on right foot on a stair, left foot on the stair below that one, etc. I expect I won't have to think about that in another couple of weeks, will become 2nd nature.

Couple things that I started to realize a few months back. Although the stroke brought on a lot of challenges and a new norm, in my case, it is not terminal, just inconvenient, took me a lot of work to get some normalcy back. The other thing, I had someone that went through something a lot more serious and stressful say to me (a line from the Shawshank Redemption movie), "You can get busy living or you can get busy dying." That kind of hit home and I decided to get busy living. You never know what tomorrow holds, enjoy the day. I understand strokes affect each person differently, some have more challenges than I, that is my story though.

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That positive thinking will get you far.

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@barbarajean100

I am 49 and at 47 I had my first cerebellar stroke. I am interested if anyone has similar issues. I have lots of issues, and will share if you want, but I have always had speech difficulties. The weird issue with me is that first thing in the morning or after a quick nap I have no speech issues, and sound like normal me, but as soon as I start to do something or focus or get anxious in any way or overwhelmed or multitask or focus on something, my speech will go "off" and I become so bad I can't say a word or my tongue and jaws will not make the words and I sound stupid. They are calling it dysarthric speech. It just doesn't make sense. I am so blessed so I hate to complain but I have wanted to reach out for a long time and just didn't. Can anyone help?

Blessings
Barbara

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My first stroke….are you wanting another???
I had my only stroke in November ‘18. Dragged my foot to the door after waking from an incredibly bad nightmare. Left arm tight against my chest, drooling.
Some one was knocking on my door and wouldn’t stop. The bug man prevented me from being full on paralyzed. God bless him.
No one would be able to tell I had a stroke today.
I had another mini stroke in March.
I miss my brain cells, the ones that told me where the letters on a keyboard or how to access my memory banks.
I also have multiple sclerosis so these challenges could be from that also.
All in all, I CHOOSE TO LEAD A TRIUMPHANT LIFE.
ATTITUDE IS EVERYTHING.
BRIGHT WINGS

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@hammondm99

Hi Barbara. I had a the same type of stroke a couple of years ago. I experience similar challenges to this day with my speech when things get mentally tough at work. It never seems to happen outside of work. I don't think my speech challenges get as bad as yours though by the sounds of your post. My job in general requires a lot of problem solving and by Thursday, I am a bit fried and find I have trouble pronouncing certain words. I can get most words out, just a few syllables I struggle with mostly. The more I think about getting the words out when I talk, the worse it seems to get. I don't seem to have these challenges when I am away from the work environment.

BTW, don't feel like your complaining, your in the right place to explain what you are feeling and ask questions!

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Thank you from the bottom of my heart for sharing this. It is so "validating" to know that someone else experiences the similar symptoms. Your descriptions seems a whole lot like my experience. I was just reluctant to reach out because alot of persons have it so much worse than mine. I feel like I would be complaining because there are so many much worse off. My experience has been more in my "thinking" and "cognitive" than the outside obvious injury. I do have a little bit of trouble with my right three fingers on my right hand and my right arm, shoulder, hip and foot, but for the most part, I am ambulatory. I am not going to list everything but I would say that most I deal with balance in a car when riding, I drive to the right because I think my perception is off. I get overstimulated so easy even in menial tasks. If too many things are going on, like tv and telephone call and someone talking, I can't have good perception because my mind is too busy. That's when my speech suffers the most. I can be doing fine in the morning when I wake, and a phone call come in and I answer and immediately my speech will be dysartric. My neurologist says its called "flooding" and I just have no filter/buffer. Forget the grocery store. Too many people. I will stop at that because I feel like I am complaining again. I promise I'm not, it's just things I wonder if someone else deals with. I apologize.

I want to thank you for your positive words and encouragement. That means so much. I appreciate it. I would like to say that I am a very positive person and my "faith" has helped me in so many ways. AND the fact that I just try to "make light" of myself when I do something that seems a little crazy. I try to make fun of myself. The Word says "laughter" is good like a medicine so I focus on laughter. I love to laugh.

Many thanks.
Barbara

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@brightwings

My first stroke….are you wanting another???
I had my only stroke in November ‘18. Dragged my foot to the door after waking from an incredibly bad nightmare. Left arm tight against my chest, drooling.
Some one was knocking on my door and wouldn’t stop. The bug man prevented me from being full on paralyzed. God bless him.
No one would be able to tell I had a stroke today.
I had another mini stroke in March.
I miss my brain cells, the ones that told me where the letters on a keyboard or how to access my memory banks.
I also have multiple sclerosis so these challenges could be from that also.
All in all, I CHOOSE TO LEAD A TRIUMPHANT LIFE.
ATTITUDE IS EVERYTHING.
BRIGHT WINGS

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Hello

My first stroke was July 12, 2017 and then the second was February of 2018, about six months later.

I am healed in Jesus' mighty name. Faith is what you can't see.

I'm sorry if it sounded like I was ungrateful. I am so blessed. He is my everything and I know that one day I will be 110%.

Blessings,
Barbara

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