Cerebellar stroke experience, treatment, recovery - want to dialogue

Hello, I am Bright Wings. I am 69 years old and I had a stroke in nov of 18. No one would be able to tell I had a stroke today.
Attitude is everything.
Slow down as you need too. It’s ok. Baby steps are ok during this time. And PATIENCE.
I am an old Rn, an Intensive stepdown Cardiac nurse for 6 years. I was around when they did the first heart transplants.
Trust the docs and nurses. They do know what they are doing to repair things.
I will be around watching if more stuff pops up. Smiling at you cuz together we can do anything.

I am 44. My blood pressure and cholesterol have always been good. Honestly very healthy. I had a cerebellar stroke August 30, 2019. My neck had been extremely sore and tight the week before. That day I didn't feel exactly normal, but not anything too out of the normal. Things didn't taste the same as the normally did. I walked outside with my husband and all of a sudden, I had extreme vertigo. Luckily he was near me and slowed my fall when I collapsed to the ground. I couldn't walk, he helped me in. I was so dizzy which then lead to constant vomiting and I sweat was rolling off of me like crazy. I finally said I needed to go to the ER the following afternoon. The swelling was so extreme the hospital staff was amazed that I wasn't in a coma. They think that the clot reached my brain by a PFO. I go to the cardiologist tomorrow to see if that needs correcting. I'm very nervous to have it closed and nervous not to. I'm so blessed in the fact that I don't have any physical problems that are noticeable to the public. But I have odd side effects. Some vertigo, very tired. Shopping makes me feel crazy weird. And it's hard to deal with people expecting me to be back 100% because I look normal. My anxiety is over the top. Now I have panic attacks and honestly don't want to leave the house. Have you experienced these same issues?

Great video! Thanks for sharing!

Wise words Barbara. Bright Wings

Ivon, I hope you are doing so much better! I do not have the balance issues so much like you, but I do have issues with crowds. Recently, I went to a great neuropsychologist in North Carolina and she has explained so much to me about the CEREBELLUM. I really like her ALOT. She is Dr. Karen Sullivan at Pinehurst Neurology in Pinehurst, North Carolina. She has several videos on facebook and Youtube about different strokes and the things they cause. She studied the cerebellum extensively and knows so much. She is far from me, but I travelled to see her because she answered so many questions I had about the things I was going through when no one else did. Here is the link to watch the cerebellar stroke episode she posted - https://youtu.be/tD7zImtrWNY - going to see her changed my view on a lot of things. From what she shared with us, the cerebellum is kind of like the brakes on our car. The brakes you can push down to slow the car down and not go so fast. Our "brakes" have been damaged so to speak being the cerebellum. The cerebellum is like a filter and causes everything we do to be "filtered". Our "filter" is damaged. Therefore, everything comes at us "FAST" with no brakes and no filter to slow it down. This sometimes causes us to see things as out of balance and out of control. For balance issues, I have read that there are vision therapy techniques that will help you in this area. You may want to check that out, vision therapy. With crowds, I still have issues, but I usually take someone with me. This helps me. I also can go to grocery shop at a less busier time. This helps. Or I can go to a smaller grocery store. We live in a small town so that helps. I hope all of this helps. God bless! Barbara

Hi, @ivon - I moved your post to this existing discussion where you have posted before on cerebellar stroke so that you can connect with others who have similar experiences such as @ian7811 @leslon @hammondm99 @brightwings @barbarajean100. Simply click VIEW & REPLY in your email notification to get to your post. Hoping they can let you know if they have also experienced balance issues a year or so after a stroke and getting nauseous under circumstances like large crowds and weather changes. They may also know about balancing exercises and how they have helped them, along with time.

Here is some Mayo Clinic information about rehabilitation from stroke that may be helpful https://www.mayoclinic.org/diseases-conditions/stroke/in-depth/stroke-rehabilitation/art-20045172

Have you felt the exercises have improved your balance from where it started after your stroke? Did the therapist who assigned you these exercises have any thoughts about whether continuing them over time will help?

I have balance issues 1 year after a stroke. Being in large crowds, weather changes, are the most significant.I look totally normal , but some days are really bad I get sick to my stomachache. I do balance exercises everyday and I feel therapy is gone as far as it can go. Does anyone felt like this and will time help?

I had a motto I learned to use while I was healing. I would repeat it over and over like a mantra.
I still use it today in times I have no control over.

This Too Shall Pass

I keep exposing myself to the things that I struggle with and everything gets better in time, both the physical challenges and the mental challenges.

Hi, @hammondm99 - you said that previously, the "brain flooding" in places that are very busy, tight aisles, lots of smells or sounds, etc., caused you anxiety. What helped that improve for you?