Cerebellar Stroke - experience/treatment/recovery

I have mentioned this before as a reply, but I tried Propranolol about a year after my stroke. My stroke was in March of 2011. That 1st year I had headaches everyday, as soon as I opened my eyes in am. Had sort of an emergency visit in 2012, to a clinic I had never been to before and the Doctor recommended trying that drug, worked for my blood pressure and the headaches. Was amazing how much it helped me about a day after I started to take it. Have been on it since 2012 and it helped alot, they are not totally gone, but much better than it was, although in the last month or so again I have been getting more headaches again and they are worse (like what I had the 1st year after the stroke). Sometimes taking Advil in addition to Propranolol helps, but not always.
I also have that feeling of not quite being there so to speak, just kinda in a daze, sort of, can function and do my work, but have to try to focus on everything so much more than before. For me it is really hard to honestly say I enjoy much of anything, I personally think it is from having to focus so much on what used to be, simple enjoyable tasks. Also it might help to have a job that is NOT stressful, if there is such a thing.
One more note, I have a fusion between C-5 and C-6, some of the headaches could be from that also, but again I don't think there is a fix. I personally think a tiny clot formed in that area and moved to the Cerebellum. I say that because we never did figure out a cause or where the clot came from.
It would be interesting to know how many of us, still do not have a diagnosis. Would it not be interesting if the doctors surveyed survivors with the same kind of stroke and asked many of the questions we are all talking about, to see what is most common among the most people and then at least try to come up with a workable fix or steer us in a direction that might help us help each other. Remember time and money are a big part of everything. Many times nothing gets done because of those 2 items.
All that being said, I do believe that some days just suck more than others, but we are the one effected and it is still up to us to keep trying and never give up!! Keep the faith!

It's been a while since I posted, so I wanted to provide an update for those of you that may be new to this stroke thing and are wondering how others have progressed. I had my Cerebellar Infarct on January 6, 2018 at the age of 56, my cardiologist thinks it was due to an AFIB episode I had. I am a generally healthy and active guy, ran 3 marathons, 1 triathlon, 1/2 marathons, 100 mile bike rides through my early 50s. The stroke affected my right arm and leg, After the stroke, I was dealing with what I assumed was brain flooding when going to "busy" stores, in the machine room at work, walking down tight hallways, basically places where there was a lot going on around me, I would get anxious and couldn't wait to get out. I am right handed and struggled with the basic things, brushing my teeth, combing my hair, writing, holding a pen, using a keyboard and mouse, anything that required coordination with my right hand. I started playing guitar in my teens and could no longer hold a pick or keep the beat when strumming. My right leg felt heavy, stairs were a challenge. My balance was a bit off, though I was able to drive my car within a few weeks of my stroke and was back on my motorcycle once the weather allowed. I found myself at times putting the front brake on my motorcycle heavier than normal, but not too much, had to really think when using my right hand on the wheel in my car. I definitely had that "off" feeling, was worse towards the end of the work week for me, better after shutting down for the weekend. I did in home PT pretty heavily for 7 or 8 months and every day I saw improvement.

14 months later, I would say I am 95% of the way back to where I was pre-stroke. I still do a very limited amount of formal PT, but primarily keep myself busy daily doing things that require concentration, balance and coordination. I am somewhat of a mechanical guy and have had no issue working on cars, my motorcycle, my home, etc. I play my guitar almost daily and am very close to where I was before the stroke, expect to be 100% in due time as long as I keep practicing. I took a big step forward with my playing maybe 2 months ago, it just got much easier to play, my muscles were all of a sudden much looser. Brain flooding is almost non-existent these days, that seems to have subsided greatly in the past month. I still have a little bit of a stiff right leg when I get up in the morning. The stiffness mostly subsides once I start moving around, but I do feel my leg getting a little heavy by the end of the work week. My head is also a little cloudy by the end of my work day, which is usually 10 hours, clear in the morning. My speech slurs a little also when I get tired. People around me don't notice, but I do.

My cardiologist appointments are annual now. During my last visit, the doctor noticed I was having PACs occasionally and mentioned this could be the precursor of an AFIB episode. My PACs started lasting upwards of 20 minutes, so he put me on Metaprolol to make them less intense. I still get PACs on occasion, but they are less frequent and they only last a minute or so.

I know each person is different, but there is hope for recovery. I hope everyone out there has the same success that I have had. It took a lot of work for me, no cutting corners to figure out easier ways to do things, but the work is paying off.

Hello @hammondm99
I appreciate your update. It is so helpful to know how a positive attitude and working hard at recovery can make such a difference. You've accomplished a lot since your stroke and I applaud your victories.
I am interested in what you described as "brain flooding." Is that a typical post-stroke symptom? Do you still have that symptom when you are in a crowded or noisy place?

I had surgery to fuse C4-C5-C6. That night while I was hospitalized was the night I had the stroke. Everyone blamed the symptoms on my surgery and a reaction to the drugs. It was a year and a half later that an MRI done at the request of my ENT showed the stroke damage caused by an vertibral artery dissection at the surgery site.

Hello @bille

I appreciate your contributions to our discussions on stroke. You must be very grateful that you have a correct diagnosis now and most importantly that you have a supportive family behind you. There are all types of therapies available (physical, occupational as well as cognitive) perhaps John Hopkins will be able to put you in touch of some of these therapies.

Have you had any of these therapies yet? When is your appointment at John Hopkins?

I have not had any therapies yet. I will be tested at Johns Hopkins March 22nd.

@bille

I hope you get some good help at John Hopkins. Here is some information from the National Stroke Association regarding strokes as well as support groups, just click on the link,
https://www.stroke.org/we-can-help/
You and your husband might find it helpful to read through the website and become familiar with the information provided there. There is also a way you can input your city and state and find support groups. Support groups will help you realize that you are not alone, much like here on Connect.

I look forward to hearing from you again. Will you post an update after your appointment?

Strokesurvivor, your story is well written, which I appreciate. I found myself within it. Alice in wonderland is how I felt then, and to a much less degree, now.

Two weeks before my stroke my cerebellar region hurt so bad, I asked my son if my eyes looked right. They did, so I just endured never dreaming I was on the cusp of a full blown, knock down, punch in the head, stroke. Before stroke my head had been hurting terribly, but I just figured migraines. Didn't seek help, had no balance problems or loss of control.

Funny, when the #$@# hit the fan, all hit me at once. And I knew it was a stroke. Was at hospital about 45 minutes later. No bleed so received tpa. Only immediate help it gave was my sight significantly improved by day 2. All deficits I presented with, came home with me.

FAST did not apply. The 3 Vs among other things were there. And stayed, but vomitting cleared up first 2 weeks. My limbs on left had ataxia. When I moved them, it felt as though they were gonna float away. Could not make them do what I wished, though they remained strong, just disobedient, lol. Impossible to walk, use left arm. I could think, talk, with little difficulty.

Besides headache, everything hit at once. Had a strange sound in my head at onset. Similar to celophane crunching in my skull. Did you experience that?

What exactly we're your deficits, if you don't mind my asking? How long before you felt somewhat normal? Was it a large stroke? Just wondering what life is like now. Sounds like you have loving support at home.I do hope so. No fun going through. Much worse, alone. Blessings!

Thinkit, while I enjoy a positive attitude like you have and hopefully I have, not having read all your posts, I wonder if you had a large or small stroke. With some of us, we will NEVER be BETTER than we were, physically. That is just not possible. I may become a better person, emotionally, spiritually..and if that's what you mean, I sure do agree.

Looking at this realistically, many of us are disabled. Some of us have even lost the ability to correct our balance. If we stumble, we go down. When we are in public, well me anyway, I appear as though I've had one too many, lol.

This may just be me and I mean this personally and as my take, but when people would, God bless them, say things like...you will be better than before...it strikes me as saccharine and unrealistic. Actually somewhat irritating as I continue to spill my drinks, stumble and fall, drag my left leg when tired, and my hair looks like crap because my left hand is so dysfunctional it would rather wreck my hair than subdue it. Can't clasp a barrette, can't help my right hand get the job done.

If I am being silly or overly sensitive, I don't mind being told. Surely, I don't want to discourage anyone from encouraging, but, again, just speaking for myself here, when I am told that type thing, that I will be BETTER, I feel as though the bewildering event I experienced and am still experiencing is being downplayed and I am being placated instead of more realistic acceptance of the new me. When people respond with honest acceptance of where I'm at now, I find that somewhat consoling and satisfying.

Forgive my many words, but struggling to explain why I object to your kind, but maybe incorrect thought or approach to encouraging stroke survivors. Maybe I'm just messed and wrong headed. Please feel free to respond....and correct me. Still trying so hard to understand the new me.

Bille, could you explain the cerebellar tremor for me. I have always called the shaking in my left side, especially and mostly when I attempted to do a task, small things, like removing money from wallet, carry a drink, hold a paper plate while using right hand to put food on, always referred to this as a palsy.

This out of control shaking did not appear until a month or more after stroke. It just appeared. I was scared thinking I may have had another stroke without realizing it. It is uncontrollable and annoying as heck, mostly shows itself when using left hand to do little things. Also have tremor throughout left side when simply trying to stand still. What's up with that???

Anyone have any idea what makes this happen? I think another poster besides us has mentioned this. Would love to know more about this nasty clingon.
Thanks 🙂