Cerebellar stroke experience, treatment, recovery - want to dialogue

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

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.

Yes thanks!

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!

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?

@brightwings....about pain med. I get a script for each month, lasts around 17-20 days. Then I go 10 days without, so I never have to have mgs bumped up. Every month they work. I have 10 days med free to reset my body. During that time...well...it's hard, but worth the break. I've had therapy galore, have a tens unit, feels good in the moment, but nothing lasting. Have lidocaine stick on patches, not strong enough or go deep enough. I've never been one to expect no pain in my life. Pain happens. Made peace with that a long time ago. Tolerated it. Exercised through it. Powered through. Now I am ready for relief. I don't want my meds controlling me. So I chose the ten day break. Won't try and tell ya my body hasn't developed dependency. It has and I am reminded of that during the first 6 of my ten days off. But, without the help, holding my grandkids, going places with hubby, doing my own shopping...none of that gets done by me due to pain. At this point, I don't care that my pain is masked. I care more that I get to participate in life, rather than just being a bystander. Correct attitude? Maybe not. Is it a healthy way to deal with the pain? No, but is a life spent sedentary good for me? No. I made my choice. I want to move, keep busy at both work and play.

Truly, I am glad for all who function well without the double edge sword pills. Good for you. Oh! Happy Mothers Day!!!!
Sounds like you're gonna have a great time. Yahoo!

@jmjlove
Thank you for your smile...
I lost my wonderful old male doc to retirement. He hung on working and helping folks finally and decided to live life...God bless that man.
Thank your doc for being careful. My foot doc put me thru 6 foot surgeries in 2 years. I ended up addicted to hydrocodone.
It took 2 years to get over the psychological addiction...and I did it. Hard as it was.
.
A handy tool for body pain, muscles or skeletal, get an order for lidocaine cream. Then apply it to the areas that hurt. Numbs it right up. Add a small piece of plastic bag over the ointment. It makes the lidocaine cream sink in and stay there instead of rubbing off on your sock.
.
Be aware the pain is still there, you just don't feel it...
.
Too much physical pain gets stored in the body...
And will cause havoc later.
.
Ok, headed to Silver Dollar City with my family tomorrow. Everyone is home with their mothers and big parks like this are almost empty. Its so much fun....
Picture me riding the big rides over and over tomorrow, free as the wind of this ailing body.
.
Cuz sometimes we just have have to let go of it all and go have some fun.
Brightwings

@merry....thank you for a thoughtful reply to this whiner. Sounds like the specialists involved in your care have served you well. Truly glad for you. I guess I really am just sour grapes. I too have issues, but I do long for the days when my Healthcare was simple, uncomplicated and managed, for the most part, by my primary care doc. God bless.

@brightwings...Lost my female primary due to retirement. Loved her, miss her. Now I have a male caregiver who is just great and has taken over treating me, and my pain, which keeps me out of pain management and yet another doctor. He is very modest in approach to pain meds, but has no attitude about me or my needs. He recognizes I am a normal woman, with a healthy happy lifestyle, who just happens to have constant, unfixable conditions. And I'm grateful. Yep. **she smiles**

@jmjlove- Good morning. We haven't talked yet but I'm right there with you on this one. I'm a mentor for Mayo Connect, mostly in lung diseases and I also support the anxiety and depression group. I'm a 22 year lung cancer survivor and 2 years ago I had a few small mini strokes that effected my right eye. I had a stent put in and everything is fine now. I just had my annual testing and things look open and smooth flowing. Two years ago I also had my 4th lung cancer and between the two I was traveling to MGH (Boston) almost once a month and was bouncing around like you. Last year I was also followed very closely because I also needed to have a collapsed pulmonary artery repaired that had been nicked in my second lobectomy ten years prior. Finally in February of this year I was given a six month reprieve between CT scans for my lungs but still this doesn't account for the specialists at home.
I agree that things need to calm down with so many specialists but on the other hand isn't it great that science has improved techniques and treatments so well? When my artery collapsed my lung surgeon sent me to a pulmonary radiologist and he came up with a personalized remedy to fix the artery. My surgeon is now teaching that to his students. I did wind up having a stent placed and my breathing hasn't been this easy in a long time.
I ask some of my doctors if I can have any of the treatments through my pcp but some of them are too technical. Maybe you can ask for this too?

@jmjlove
I absolutely feel the same way. Only it sounds like you like your primary. The docs I loved and trusted are gone to retirement or to further their careers. Bright Wings