Recent cerebellar stroke

Hello there, I've joined Stroke Org because I recently had 4-5 minor cerebellar strokes over three months and then a major one in September. I'm 44. My story thus far. (Apologies in advance for the essay length).

Early June, I was working in my orchard and took a step only to feel faint. I jumped on my Kabota, drove like the wind back to my house. Ignored my niece and son who were begging for a ride. Raced up two flights of stairs and fell asleep on the couch for several hours. I thought I was having a panic attack (I have had these since my twenties, so they are a mere nugatory in respect to what was really going on). After rest, I felt fine. During the following days, I felt a bit giddy, not dizzy but giddy. I contacted my GP who over the phone diagnosed me with BPPV (Benign Paroxysmal Positional Vertigo). "There's a lot of it about, everyone's gardening because of lockdown," she said. Okay, fine. Over the next few weeks, I went about my daily duties with a cane, mucking out pigs, pruning fruit trees, gardening, and making light of my "wobbliness". Everyone I spoke to who had had vertigo had recovered after a few weeks. Mine was now a month in and I started to worry. 

So, I booked a face-to-face appointment with my GP. I went through my concerns because I had done some research and I was troubled with my symptoms, but my doctor drew me a picture of my inner ear and that was that. After several months, I contacted a different doctor and told him that I had done some research and vertigo symptoms can be the result of lack of blood or oxygen to the brain. He said this was certainly possible and booked me in for a cervical spine x-ray. I waited ten days for the x-ray to get to the surgery. When it did, I contacted the doctor but he had gone on annual leave and my previous GP had seen the x-ray and given it the all clear. About a week later I had the major cerebellar stroke. The paramedics were convinced it was a severe case of vertigo and asked me if I wanted to sleep it off. I refused. Even in hospital, I was given the Epley Manoeuvre. It is clear that this kind of stroke is so uncommon that it just doesn't register on the radar for most medical professionals. A few days later, in hospital, thanks to the Ear, Nose, and Throat specialist, a doctor who was convinced it must be something more than just vertigo - I had an MRI and they discovered that clots had formed on both sides of the cerebellum. This in itself is unusual, the clot normally goes up one side (left, right, or middle). To be honest, it was only myself and my cat who seemed to sense something more sinister was afoot. My cat curled up next to me while I waited three hours for the ambulance to arrive. 

So, here I am. They still haven't found a cause yet. The stroke consultant doctor believes it may be caused by the Patent Foramen Ovale, so I am due to have a Bubble Study to determine if this is the case. I have, by their accounts, been thoroughly tested for other causes. This unkown gives me great anxiety and nervousness. After a week in hospital, I have been discharged and have been home now for three weeks. 

I can walk okay, my coordination is pretty good, my strength is fine. However, my head often feels fuzzy and heavy. I suffer fatigue quickly and unfortunately, I rapidly am disconcerted by the perceived states of normality that swing back into disorientation. I don't feel dizzy (I don't want that feeling again), I'm back to feeling a bit giddy, like a lag between my head movement, eye movement and brain awareness. This lag contributes to the fatigue. I am not out of the woods, but I am on medication. I get sore legs at night causing bouts of insomnia, cramps in my upper thigh and lower calves. My neck is stiff and sometimes cramps. Swings and roundabouts, some days, for a few hours I feel fantastic, back to normal, and then later on, I feel rotten. I am nervous about any acute changes, I have become quite an on edge and prudent individual. 

I know that I need to get outside and do what I would normally do. I know from experience that when I have done this I feel good but tired. What have I got to lose? If I have another stroke outside, what is the difference from having it in bed? It's the steps to get out there that make me hesitant. If I feel a bit giddy in the kitchen, I want to go straight back upstairs and sit or rest. I am slowly introducing meditation, CBT and mindfulness into my life and slowly exiting coffee (more than one cup), booze (more than one glass) and smokes. I teach English online as a profession, my students have been fantastic, as I can't teach for more than half an hour, and many of my lessons have to be rescheduled or cancelled depending on my frame of mind. Hopefully, I can resume as normal in three to four months. 

I would be interested to know what other symptoms people who have had cerebellar stroke have incurred. My main symptoms are: neck ache, fuzzy head, disturbed vision (a kind of detached sensation to my surroundings), giddy/wobbly gait, extreme fatigue, shortness of breath (on occasion), leg cramps, auditory overload, loss of appetite, speech exhaustion, some muddled words, unclear thoughts, and of course, anxiety/nervousness. I also suffer from panic attacks, but I am so used to them that they don't bother me with the underlying symptoms of post-stroke.

Hi There,

Just to say my sympathies go out to you and know how you are feeling. I am in the same position as you, had my stroke one year ago and am still having all the symptoms you listed. Before Covid, back and fore the Doctors and Hospital, only to be told I was suffering from Anxiety and panic attacks. Well sorry (unlike you) I have never suffered anything like that before, I know my own body and this is definately physical......I went along with them took anti anxiety pills, to no avail, so I basically have had to try and live with it all. But it is not easy and impacts on my life terribly. I keep fighting it and try to do all the things I used to, but most of the time end up giving up. I just wanted to let you know you are not alone with these symptoms, and if I ever find the reason for them I will let you know.

Take care, and know that I am thinking of you . Jane.

Hi Jane,

Thanks for taking the time to mull through my rather long story. I feel awful for you that these symptoms have dragged on so much. I am to understand that physiotherapy seems to be a major part of recovery. I am about to submit a self-refferal for this but have not been accepted yet. As I try and get on with "normal" activity, I am hoping that this in itself is a form of physiotherapy. It seems as though your diagnosed "panic attacks" were the equivalent of my diagnosed "vertigo". As my father wrote to me recently, "Diagnosis is the most important part of medicine".

Quite agree with your father!!!! Why can't they get things right.

Anyway, keep in touch and let me know how things are going.

Jane.

Cerebellar stroke ,61 years old ,had mine 1year & 3 months ago . Unfortunately feel I have not really improved .Having short break , looking around gardens of stately home, probably one of the hottest days of year,  giddy & felt sick , thought poss sun stroke ?

My wife took me back to Travel lodge, hardly able to get out of bath & to bed .In bed for 2 days ,my wife insisted drive home approx 4 hours, worst journey ever , sick & very kind chap really carried me back from service station to car .Home bed 2 days ,called ambulance ,A&E , most of night they thought not a stroke , eventually scan ,yes stroke & to stroke unit .After week back home to recently bought bungalow ?.

Mobility bad , outside mobility scooter or walking stick , at home grab rails & fixed shower chair . Fatigue terrible bed each day by approx 12 pm / 3 hours rest bed again by 10 . Giddy, speaking & particularly telephone calls ? ,very tiring. Struggle to turn my neck & loose balance. Much more anxious, particularly covid ,then I feel I should be. Used to be a builder in previous life ,try to do diy for 2 or 3 hours every other day , 3 days to fit grab rails ! For me I think this is good physio for me & also mentally good feel I can still achieve something in my own funny small world. Reading struggle, tv MUST have sub titles on , although can hear speech my brain somehow does not understand, without?

CERIBELLUM stroke I believe one of worst places to have,  many do not survive this , therefore extremely grateful not worst . Do hope you improve better than I have .

Good speaking David. 

Hi David. Although my stroke was different to yours, mine was a blood clot in the middle right of my brain, I have suffered with vertigo since the 1980's.  I have found, like you, that since my stroke, I cannot read as the words lift off the page and my brain can't absorb what's being said on the page. Having my head looking down brings vertigo on almost immediatately.  I can't watch flashing lights or rapid camera shots on the TV - adverts are the worst with quick snap mottos amongst abstract designs. I watched one advertising a new estate agent on line - I won't mention the name but the green and white of the abstract lines flashing on and off the screen actually made me feel physically sick. I have to close my eyes now to avoid them.

I have taken Stemetil for vertigo for years on and off when I needed to but GP says I couldn't take it since my stroke. I spoke to him 2 days ago and he has prescribed me something else - what I don't know until I pick up my prescription from Boots so we'll see if they are as good!

Hopefully, one day Covid will go away and we will all get back to some sort of normality and get the treatment that we all deserve rather than being pushed to the back of the queue all the time.  Keep your chin up. Rest does help as does exercise no matter how small.  Recovery does come but it's oh so slow sometimes.  I was 65 when I had mine so 3 yrs plus a few months past now.

Hello David, 

Gosh, that's a long time post-stroke before A&E. The thought of your painful car journey gives me the shivers, especially the length of time you had to endure in that confined space. It really brings to the forefront how little awareness there is in respect to cerebellar stroke and how much there should be, not just to improve the chances of each survivor but also to better our health services in dealing with cerebellar stroke and the difference between it and other conditions with similar symptoms. 

I was never the most conversational by phone before stroke but now I find the process almost unbearable. I can't seem to syncronise listening, responding, and speaking. Often, if it is a bureaucratic call, I feel like hanging up midway if the speaker on the other end is dragging on with too much information. 

I think your DIY jobs are most definately a form of physio, I have a small farm, apiary, and orchard. I had a sick pig this morning, I forced myself outside to carry buckets of water to her and do a little of what I would usually do. It made me feel good. More importantly, I think little things that "normalise" life under the current conditions are an indispensable ingredient to recovery. 

When you feel fatigue, do you feel giddy and fatigue? How do you push through the giddiness, balance issues each day without worrying you're having another stroke? Does this cause anxiety or have you learnt to recognise the regular symptoms of post-stroke?  

 

 

Hi David, 

It was sad to read the story of your stroke.

Mine was a basal ganglia stroke.  A haemorrhage. Not that I have read that much about it.  Don't want to know. 

I think the post stroke David is pretty amazing.  Keeping trying even though your stroke is making life extra tough. 

 

But as that cheesey old song says " when the going gets tough the tough few going"

 

Do you think that your former career has helped give you the physical and mental strength to get you where you are at the moment. I do, ability to problem solve, physical strength and a positive attitude. 

 

Hang in there you never know what's possible until you try.

Have a good weekend 

 

Kay

Looking down or up, is difficult for me as my neck seems almost very stiff ? Also, go giddy ,shoe laces ,nightmare. 

Good speaking.  David. 

Cerebellum stroke ,yes similar to you . Anxiety too much , not natural, use to be about another stroke,  covid seems to have taken over ?I feel I would struggle with extra poss fight needed . Like you poss fresh air seems to clear my head.I also find easy going comedy shows,positive things ,to watch , befor bed . Thanks David 

2.5 years on for you Kay , did you feel improvements gradually. I am 1.25 years on & still hoping. Good to talk .David. 

Hi David, 

My recovery came in fits and starts. For the first 7 weeks I was completely paralysed down my right hand side. Then I was able to stand up with a hoist thing used by the physios and nurses.  It was then very slow and gradual progress.  I went to the gym 3 times a week when I got home and did the exercises I was shown in the stroke unit at least 3 times a day.  I have plateaued a bit recently. Not doing my exercises and dealing with the death if my husband in June this year.

But I'm determined to keep trying,  reading the posts hear gives you inspiration. 

Have a good day Kay 

 

Kay ,so sorry to hear your sad news .All the best David. 

Hello I dont know whether you have read the things that have happened to meI am Norma Jean I  had my stroke 3yrs last june it affected my head and eyes I have got double vision and a continual  funny feeling inmy head it isnt giddy as such I cant explain it I am not normal and it affects everything i do it is lmike pressure in my head all the time and as though there is a block in it and i have trouble turning my head and bending down I feel like that from the time I get out of bed till I get back in it. I have been to every specilist possible there is one left I havent tried and I ampaying private to see him he is a neurologist and my fingers are crossed that he can do something for me. I feel very sorry for you and hope to hear more from you in the near future. All the best. Norma jean 81 yrs. young.

Hello Norma Jean,

I haven't heard your story but I will look for it in the forums. It seems strange sensations are going on in our heads, it would be good to know why. At times, I have a fuzziness surrounding my head, other times almost like when one speaker on a stereo system has a slight hiss, it's not the hiss but that "empty space" I feel. I sort of know the pressure you are talking about, if it is the same for me, I feel a pressure but it isn't physical like a migraine, it feels like my brain is on hold as I move around. I am starting to wonder if this is from being over-stimulated, sounds, sights and movement. Although, for me it is quite early on, and I am only just starting to unravel all the obstacles I must overcome during the day. I am sorry to hear that your symptom lasts for so long. Have you noticed any time it stops? Any noticeable thing that gives it some reprieve? 

Thanks for getting in touch. It is beneficial hearing how others are doing.

Hi Norma, Just found your post.

This is to let you know I have exactly the same, as you said, it is difficult to describe......the pressure in my head is sometimes unbearable, and the only way I can releive it is by putting a really tight hat on (seems ridiculous) but it is the only thing that helps. I like you have gone all down the lines to try and find out what it is. I have even had a private appointment with a neurologist, who was of no help at all, just kept saying "its not Red Flagging anything" whatever that means, and for me not too worry. He also said if that hat works, do that. A lot of money wasted in my opinion!!! I also have an aneurism, which is not growing, so they are leaving it alone, but I really have had no answers. Just thought I would send you this message to say you are not alone with this problem, if  that helps. If I ever get over it or cure it I will let you know, and hopefuly you will do the same. Try the hat, it has helped me cope with it a bit better.

Best wishes,  Jane.

Hi Jane all I can say is that I have forgotton what it is like to be a normal human being the thing is as I have said previously I had double vision from the stroke and was advised to have a botox injection into themuscle of the eye. It spilled into the good muscle and cured the double vision vertically but caused it to go horizontally that was 2 years ago. From that day to this my head is much worse than from the stroke. I wish I had never had it done but it iss too  late now and I have just got to get on with it. I have just discovered I have got an irregular heart rythm  and take blood thinning tablets so I have to be careful not to cut myself as the bleeding is difficult to stop. I  have gone on enough now. Norma  All the best to you. 

Thanks for replying please do look at my forums. If anybody can come up with how to deal with it and a cure I would feel like I had won the pools. Norma.

So sorry Norma, take care and feel free to contact me whenever you want. Do try the hat though. Best wishes, Jane.

 

I will keep in touch and if I can find a hat I will try it . i have good days and bad days and today is not good at all.  I amlucky that my husband does most of the work for me as I am only comfortable sitting down.