Cerebellar Stroke - experience/treatment/recovery

I only had a headache the day of my stroke and it wore off the day following, it was in my upper neck/lower back of my head. I guess it goes along with the stroke.. I very seldom have headaches, when I do, I find myself getting a little paranoid that another stroke is coming on.

I had a stroke (or multiples) on Oct. 28th, 2018 - I am in rehab and at times I feel like I am going backwards. I did not have the typical FACE either and answered all the protocol questions...but very slow to respond. I felt like someone hit me on the side of the head with a bat (right side), and my vision was that of a kaleidoscope - I had to keep my eyes in the dark for a week and suffered extreme headaches. They said I had a stroke in the right cerebellum. I don't understand and am confused by the fact that I have no pain feelings in my right side. I go to therapy and my right side does not want to do what my mind is telling it to do. I have to do it with the left first, to try and figure out what to do.
I am frustrated, depressed, and just want to be normal again. I forget everything now...I write it down, but then I have no clue where I wrote it. I have started keeping one book for everythiing, but need to remember to use it. I used to be a highly intelligent person, and now I mess up words all the time. I hesitate and stammer most when I am on the phone with someone I don't really know and have to answer questions (like insurance, etc.)
Someone the other day (at a restaurant) said I was drunk. I can't drive. I now take zoloft to help with the depression. It does minimize my crying spells, but still. I can compensate and appear okay to people, but it takes everything out of me and I am exhausted.
Some of you are saying 10-12mths of this??? I am only 54 and that seems like forever to me.
Sorry, I feel like I am just venting.

Hang in there and try to not to lose sight of the gains you may see no matter how small! I went through the same and it is frustrating! If your stroke was anything like mine, believe it or not, you will get better! It just takes patience and work. Your speech will improve and you will find things become less difficult over time. I found I had to keep the number of things I focused on in rehab small, focus on just a few things, it was too overwhelming and depressing thinking about fixing the 1000 things I was struggling with as the result of my brain injury. Once I would get one task down, I would remove it from rehab list, chalk it up as another win, and add another task I was struggling with. I found it is all about repetition and you will get there! There were times when my progress stalled or seemed to go backward a little bit, but it would always pick up again in a few days. BTW, feel free to vent, not a bad thing, I know exactly what you are going through!

Some days are better than others. I work in the IT field and it makes it hard to work. I’m only working 4, six hour days a week right now. I’m taking 200 mg of Topamax at night and 200 mg of gabapentin 3x a day, it helps somewhat, but makes me very fuzzy and I don’t like the forgetfulness and slowness it causes. If I work too much, drive too much, or just get overly stimulated with noise, light or stress the headaches will crank up to a 5 or 6, or higher real quick, they are alway there at 1 or 2 all the time. I’m learning to live with with it now, it’s just something I guess I will have to live with.

Thanks, I’m so glad I found this. Unless you’ve been though this people don’t understand.
Keith

I also work in the IT field and know what you mean! I had to gradually build up my work week over the month after my stroke, slept a lot to recover. I would get fuzzier as the week progressed but was fortunate to not to need meds, The more intense the week is, the fuzzier I get. I still, after 11 months, look forward to the weekend to shut my brain down for a couple of days!

On the bright side, I seem to have taken a corner in the last 2 - 3 weeks, I am noticeably more alert than in the past and my coordination and fine motor skills on my right side are much improved. I will guess my brain made some big strides with reorganizing itself. I have been playing the guitar for many years and the stroke impacted by ability to hold a pick, strum to a beat and find the strings when picking (and brushing my teeth, writing my name, using a keyboard and mouse, holding a pen, combing my hair....). Took me all of 2018 and a lot of work/rehab to get to the point where I feel more in control. I actually played guitar in front of a crowd last weekend for the first time in almost a year, I was anxious at first, but it felt so good once I started and I actually forget about the stroke!

You hit the nail on the head when you say "Unless you’ve been though this, people don’t understand", so true. I am one to internalize things and when I do discuss the challenges I am dealing with, people either don't get it or you can tell they feel uncomfortable when I talk about it. I very much appreciate having a place to go to ask others if they are experiencing similar challenges and find out what they may have done to get through them.

Thank you - just curious (I know everyone is different) but what sort of timeframe have you been on.

Your right about the weekends, I have to let the brain rest, I've been lucky and I'm able to go in work early when no one is in the office and work in the quite and leave early. That helps the headaches. But, as the week goes on, the headaches get worse. There are time I feel like people don't believe me that I'm in pain. I'm not so much such as if they don't believe me, as it much as they don't see any outward signs. I didn't have any outward disabilities from the stroke, no real bad coordination problems or loss of feeling. But, more in the really bad headaches and a noticeable change in mental recall. I was always the one in the office the was quick with the answer, or the "have you tried this" and now I find myself searching and struggling to get words out.

I had a Cerebellar Infarct on January 6, 2018 likely caused by AFIB. It affected my right arm and leg, my balance was off, my speech was a little off especially when tired. I went to physical therapy for 2 weeks and decided to do my rehab at home on my own. I am a pretty motivated, very goal driven and a stubborn (don't tell me I can't) kind of a guy, and seeing that they were having me do in house therapy and charging me $50 for a 10 - 15 minute visit to see how I was doing, there didn't seem to be a lot of value there. I don't recommend that for everyone, I have seen too many people try to figure out how to get around their challenges rather than work through them, you need to have some level of discipline to do it on your own.

It took a good 8 - 9 months of daily rehab to really get my body to a fairly "normal" state. It certainly is not as easy to do things as it used to be, I have to think about doing things rather than doing them without thinking, if that makes sense. I can do most of the things I was able to do in the past. I am able to work on my house (it's a comedy show sometimes, you should have seen me repair a ceiling in the spring where I had to apply joint compound!), ride my motorcycle, work on my kids cars, stuff like that. My right side really came around when I started using my push mower in late August for my 1/2 acre yard versus using the ride on mower. I noticed a lot of strength in my arm and my leg came back, I lost that heavy feeling.

It took until 2 - 3 weeks ago before I finally was able to play the guitar comfortably again. I started being able to keep a beat, I was able to find the strings better and my right shoulder stopped getting that pumped up feeling when I played (felt like I was lifting weights). I play every night for a good hour or so as part of my therapy. My motivation there is I had a neurologist tell me I will probably never play like I used to, I told him he was wrong:-) I am guessing I am 90% of the way back and I am certain I will surpass where I was prior to my stroke within the next 6 months.

From a work perspective, they were very supportive. I took 1 week off after my stroke. I worked 4 hours for 3 days the following week, then bumped it up to 4 hours for the full 5 days the next week, 6 hours each day the week following then was back to my normal schedule 5 weeks following my stroke.

For me, I found that working on a few things I have difficulty with until they become easy again is key. I then move on to the next challenge and do it over again. Every day is a little better than the day before, a lot better than 6 months ago!

I too am in IT and the cognitive issues are what bothers me the most right now. Being what I consider a highly intelligent person, and now not even being able to come up with the correct word for something is so annoying. I know my neurologist keeps saying it could take up to a year, but I am a very impatient person and just feel like if I work hard enough it should be fine NOW. The last visit he told me to take it easy and that there's is such a thing as 'too much'. That I need time for my brain to figure out new pathways.
You are exactly right about the repetition of things - I started doing that in therapy now, and it helps a lot!!!
I don't have the option to go back to work right now. I cannot drive and my job involves dealing with a number of people on a daily basis. I am a CSI person in charge of process improvement projects across different business groups. Not really sure I will ever be able to do that again.
I haven't found any cognitive things to help me as of yet. Word find is too easy, but suduko that I used to do is way too hard. I am a math person - not an English person.
It's nice to know your time frame...makes me feel better. I guess slow and steady wins the race. Maybe I can go back to programming and work on learning a language????
I am so happy to have found this site.

Even my husband does not understand completely... sometimes I think he is just mad at me. He says he is not, but I always took care of him and now I feel like he is looking at me as if I am making stuff up. He is not here all day and doesn't come to therapy with me, so he just doesn't get it. We are only 54, so it definitely was not something either one of us were prepared for.