Cerebellar Stroke - experience/treatment/recovery

I had a stroke 9 months ago. No one said much about what to expect. I experienced sever depression and medical staff did not pick up on it for four months. It was a night mare. I take a antidepressant for the last 5 months and I am incredibly off balanced. I was after the stroke but worst now. Does anyone have any ideas?

I am an occupational therapist who is certified in vestibular rehabilitation, it is not normal for your eyes to continue not to function as you need them to and it is exhausting to process the 90% of information that comes in via your eyes incorrectly, there are a few of us out who can help. I am doing my best to get the word out there as "gaze stabilization" is critical to everyday life and so few therapists know how to treat it. One resource is going to dizzy.com to find a local provider. We are all certified specialists. It is so sad to me to see my clients suffer anywhere from 3 -12 years with horrible vertigo when it may be able to be brought under control in less than 10 visits. I wish all luck in finding solutions- keep fighting- you have already survived the worst!

Yes thanks!

Hello everyone, I’m so pleased to have found this useful site. We’re often told not to read about medical matters on the internet but I believe it’s important to do so.
For me this site provides some reassurance that I am not alone in the symptoms I experience since a cerebellar stroke in October 2018. To all those who have contributed I pass on my sincere appreciation, today I’m feeling very nauseous and by reading some of these articles I can reassure myself
that this is very much the norm after a cerebellar stroke and that it is likely to pass again.
May I share the circumstances leading up to and following my stroke.
About 2 months before I was admitted to hospital I started to experience symptoms. I would often feel dizzy and sickly. I had pains in the centre of my chest and headaches. I visited my local surgery about 10 times and saw 4 doctors but none anticipated that I had had or was about to have a cerebellar stroke. I was largely ignored and dismissed by them but I knew something was wrong.
Towards the end of October I called out the family doctor when I experienced visual disturbances, headache and nausea. I had spent several hours on the bathroom floor when I collapsed and simply couldn’t get back to bed. The Dr didn’t admit me to hospital and prescribed a sickness tablet.
The following day I called them out again and said I needed to go to hospital. Yes, I should have called for an ambulance but I never thought it was going to be that serious.
I now understand that cerebellar strokes are very rare. My partner, a practice nurse, spoke to one of her doctors about it and, although he’s close to retirement, he reported that he had never come across one in all his years of service.
I was admitted to hospital at the end of the second day, bad headache, nausea and dizziness. The stroke wasn’t identified at the hospital for two days until I received a CT scan. Whilst I missed the opportunity for a clot busting drug, I will always appreciate the young doctor filling me with rehydrating fluids. I’m sure it helped disperse the clot.
7 days in hospital and I got home. I’m not the same person, the stroke touched me very lightly, I have no physical problems but dizziness and nausea persist, as some on this site say, shopping can lead to nausea, moving crowds are best avoided and, although I’m now retired, I simply could not have expected any employer to put up with the periods of sickness I now experience.
Several months after the stroke I have good days and bad days, my partner is a great support and I’m grateful that she relieves the pressure of housekeeping, shopping etc.
My stroke was thoroughly investigated and no cause could be found and so, I’m told, it’s known as a cryptogenic stroke.
I was sent for a TEE test which looks at the heart for a hole, PFO as it’s commonly known, which can allow clots from lower in the body to pass to the brain and I have one.
I have now had the TOE procedure to get a more detailed ultrasound of the heart and medical staff have decided it would be better to close the hole percutaneously.
5 months have passed since I was told I needed this but I still await the procedure and it’s worrying.
I stay in Scotland so the operation has to be carried out by the National Health Service. I have an aunt in Boston who says get across to the US and get the operation ASAP. Unfortunately, it’s not possible because local doctors say flying not wise for people in my position. Difficult to fathom out why given that 1 in 4 of the general population has this PFO and, of course, I’m now on clopidogrel.
I’m told it’s a fairly common operation in the US but just for your information it costs £18000 in the UK to go privately.
Stroke is common in my family, both grandfathers succumbed to one, father was badly affected from the age of 50 but survived for another two decades. He lost his speech, unusually, I’m told, for a left sided stroke and he lost much of his power in his left leg and arm.
I used to ask doctors if I should take measures to prevent a stroke given the family history but none had any advice.
I have had mildly hbp for many years which was not particularly well controlled by BP meds. I took a self prescribed baby aspirin for several years in the hope of avoiding a stroke but stopped about a month before the stroke was diagnosed. I did this because of the pains in my centre chest and upper stomach and felt that the aspirin may have been affecting my stomach lining. Wish now I hadn’t because I later came across a large Swedish study which found a huge increase in strokes and heart attacks in the month after stopping aspirin. May not have caused my stroke but should really have asked questions about stopping during my many visits to the local surgery.
Anyway, thank you one and all for your contributions, I hope you all continue to make advances in your general health. Please keep writing, the more people that know about cerebellar strokes the better for anyone who experiences one.
In the UK, a recent television advert for a stroke charity has a number of people describing themselves since experiencing their stroke, like me they describe themselves not as a stroke patient nor as a stroke sufferer but as a stroke survivor. I have survived this stroke, I simply got lucky that it struck where it did, I’m still here and hopefully, with a bit of good fortune, can avoid another. I wish the same for you and good health for your future.
I remember asking my father if he was happy that he had survived his stroke and he indicated that he was and despite seeing him in a weakened condition I can draw strength from his approach and believe in the future.
If I can, I’ll update the site to let people know how the PFO closure operation goes.

Hello, take heart my friend. I am not a stroke survivor! I am a stroke thriver!
I had a full on drag your foot to the door, left hand clenched, left side of mouth drooling stroke in Nov, 2017.
It was caused by nightmares related to getting off of an antidepressant, Effexor.
.
No one has been able to tell I had a stroke in the last 1 1/2 years. I have full use of everything...
.
I am an RN. I have multiple sclerosis for 33 years and have done the MRI thing so many times in my life.
I am 68 and actively chose not to get it checked out...I hate my neurologist....
.
So today I am great...I chose to take the baby ASA for a year and then discontinued it. I too had been reading about brain bleeds after discontinuing.
I realize I am not being a very good medical example with what I am writing.
There is no history of strokes in my family so I am skating by after that occurance.
Keep coming back because we care.
Bright Wings

Thank you for your kind reply. Ian.

@ian7811 ....thank you for your story. I love reading testimonials. Cerebellar stroke here, neurologist said it's large, not massive, but sure caused me a lot of issues. Got TPA, but I guess most of the damage was done though received it within the window for effectiveness. I do believe it provided a speedy recovery for my vision.

I was a mess when I came home. Not even stable enough for a walker.

Hubby was a great help. He ran out and cut a wide walking path around our 5 acre farm. I'd hang on for dear life while he dragged me around the path. I was like a drunken sailor, but within 6 weeks I was making my way around while he watched.Occasionally he'd lose sight of me and he'd have to pull me out of the cornfield. I'd done many faceplants, but in time gained control of left leg. Then it was the grandkids cheering me on. Received 8 months of therapy, but I swear that path did more for me than any therapist could, sweet as they were!

Glad you had great home support. I had 3 kids living at home still, so I was rarely alone.

Unlike you, dizziness and nausea cleared up, but balance is a big problem.

Like brightwings, I was very motivated and life was not going to pass me by. My whole left side had what is called ataxia, where you have strength, but little control. Hard as I'd try, I could not touch my own nose with finger.

Later, I developed a tremor in left hand which really frustrates me. It is only activated when I try to do something, like my hair, buttoning shirt, tying shoes, clipping nails, etc, so hubby has to help. After 3 years, I've probably done as much recovery as I can.

Unlike you, stroke does not run in my family. Never figured out the why of it, but now I don't really care. Vascular studies are great. Now, I still fall a lot, still have a limp and tremors up and down left side, but I don't think people would ever suspect that I have brain damage. I do a lot less than I did, but more than most who've never had a stroke!

Hoping your nausea and dizziness clears up for you, Ian. God bless!

Oh, by the way, I am not the same. I hardly know myself, even though physically, I'm ok. I know how you feel. We may not be the same, but we've seen we can rise above and move on, instead of wallowing in self pity and taking on a bleak outlook on life. As long as I'm not pushing up daisies, I'm gonna laugh, work, and enjoy my family. Like Brightwings, i will not only exist, but be active, take charge and enjoy life! I wish the same for all!

Thank you so much for your reply, you’ve shown great resolve and I hope I can push myself in the way you did and continue to do. Best wishes for the future jmjlove and brightwings, I like to read this site because of the inspirational stories which you both shared with others and myself. Well done to everyone who share their personal experiences, it so uplifting to read about the challenges faced by so many and yet people still take a few minutes out of their lives to help with a few kinds words. Ian.

May I just ask if anyone with a cerebellar stroke has any advice about relieving persisting nausea. Medical staff say it’s just resulting damage and medication won’t help but maybe someone has knowledge of prescribed medication that worked for them or perhaps even a home remedy. I’ve tried stematil but no luck. Thank you, Ian.

Hi, fortunately , my vertigo / nausea has in the main has gone. The medication I was given that seemed to work for me was cyclizine, I believe its an antihistamine. Importantly - Speak to your doctor before taking it though, as too much can make you high and stop your bladder from emptying properly amongst other things.