Cerebellar stroke experience, treatment, recovery - want to dialogue

Posted by strokesurvivordynamo @strokesurvivordynamo, Apr 21, 2017

I suffered a Cerebellar Stroke in Dec 2015 in my 40s and am interested in connecting with other cerebellar stroke survivors to share our experiences, testing/therapy options, struggles on the path to recovery.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

ian7811 | @ian7811 | Jun 15, 2019

In reply to @trkuk "Let me know how you get on with the cyclizine." + (show)

Hello trkuk, tried first one mid afternoon yesterday, by 10 at night I was still nauseous, I could feel shaking in my body and I was a little concerned. Not sure if I want to try a second tablet yet. I have to admit despite being 6 feet tall and about 15 stones I haven’t been doing well on changing medication since the stroke 6 months. Even tablets I’ve taken in the past like bendroflumethiazide for HBP caused a reaction. My goodness I took this for 20 years so weird I couldn’t take it now. I couldn’t stomach the alternative to clopidogrel, I think it was dipyridamole and aspirin. When I trialled the latter combo I had to take to bed two hours later, shaking, prickly skin and increased nausea. Most unpleasant and Dr stopped them saying I had experienced some known side effects. Seems size is not an issue when it comes to side effects. I’ll see if I can face up to another cyclizine today. Maybe last nights feeling was an isolated event and nothing to do with the drug. Please don’t let me put anyone off their own trial, I see it’s prescribed for children over a certain age for motion sickness so think its usually ok. If I can face up to another one I’ll let you know but just to reiterate, the unpleasant feeling at bed time may just have been me rather than the drug.

trkuk | @trkuk | Jun 14, 2019

In reply to @trkuk "Your are welcome, best of luck with your recovery. It does get better." + (show)

Let me know how you get on with the cyclizine.

Brightwings AKA Cute Susie | @brightwings | Jun 14, 2019

I was just sitting here reflecting how different preparing for this monthly gathering of my tribe is, from just one month ago.
(I am 10% Indian).
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Today I am filled with joy and the zest for living. Preparing to go camping. Baking bread.
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One month ago I was agonizing over how to say good bye to my tribe members, sons and daughters of my heart.
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I knew I was dying....
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Yet, God in his wisdom and mercy and to HIS GLORY only, pulled me thru again. I was prepared to die....... I am so humbly grateful.
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I hold each minute of my life sacred, I hope you do too.
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Bright Wings
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What a difference a month makes!

ian7811 | @ian7811 | Jun 14, 2019

In reply to @brightwings "ian7811 I just listened to the audio clip included in the website I found, "CBD in..." + (show)

Thanks Brightwings. I’ve got some cyclizine from my doctor to try. I was well prepared thanks to your earlier recommendation. I have also been in touch with an Aberdeen company that sells CBD online and will purchase as soon as they tell me which to buy. I had no known that such a product existed legally in Scotland. Excited to try both products because it’s been a tough week dealing with the nausea. Oh I suspect it’s too late for the face cream to turn me into George Clooney....but I’ll post a picture if it does. Enjoy your weekend.

Brightwings AKA Cute Susie | @brightwings | Jun 14, 2019

In reply to @ian7811 "Wow, thanks, You’ve been so nice" + (show)

ian7811
I just listened to the audio clip included in the website I found, "CBD in Scotland, all you need to know."
It includes many of the names of the companies that produce CBD in Scotland.
Listen to it and have a pen and paper ready to write them all down. Stop the recording if you need time to write it down. It also asks people listening to write their favorite CBD in the comments below.
Go read AND TRUST YOUR GUT!
You will get thru this, one foot in front of the other gets you a long way....Bright Wings
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One of the last suggestions is to call your local pharmacy to get more info.

ian7811 | @ian7811 | Jun 14, 2019

Wow, thanks, You’ve been so nice

Brightwings AKA Cute Susie | @brightwings | Jun 14, 2019

In reply to @ian7811 "Yikes, just researched CBD, it’s unlikely to be available here. I’ll check out the others. Thanks." + (show)

iam7811
I just googled CBD in Scotland...
I found a site titled, "CBD in Scotland, All you need to know"
It is legal in Scotland and you can buy it in the grocery store in oil form.
I am excited for you, cuz I know what it does...it gave me my life back. Smiling at you, Bright Wings
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Its not cheap, I wonder what it costs there. Do your homework...call the grocery, a larger one may have more products for you....

Brightwings AKA Cute Susie | @brightwings | Jun 14, 2019

iam7811
I included the company name of each product. Look them up and order off the internet if necessary...
The CBD company I order from is Lazarus Naturals. I get 1200 mg CBD in coconut oil. I started rubbing it on my face too, I am looking younger everyday.
In 1992, the American government did a study of CBD and their goal was to prove it doesn't work, mind you...
Now the results were...our brains actually have receptors already in place to receive it and take it in.
Cbd is actually made of hemp which is the male plant of marijuana. BUT it has no THC or extremely little. (Only in its DNA)
Hemp has gotten a very bad rap and it DOES not get you high.
Now it sounds like you have been reading, but have you actually gone to the health food store or called them?
Remember, it takes an action to feel better.
I wish you well.
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I will be out of pocket this weekend. No internet signal in the woods where I will be going. I may be back on Sunday, cuz I am also moving in this week.
Hey, if anyone has any extra energy to spare, send it my way for this moving job...I am tired from looking at the the stuff I have to do to move to a decent house...next week.
Smiling at everyone
Bright Wings

ian7811 | @ian7811 | Jun 14, 2019

In reply to @brightwings "@iam7811 I help folks cuz so many people helped me. And it's who I am. I..." + (show)

@brightwings

@iam7811
I help folks cuz so many people helped me. And it's who I am.
I am 68 years old, I have had 19 surgeries in my life. Diagnosed with multiple sclerosis 35 years ago.
I am sick to death of doctors. I used to be on 16 medicines, 6 of which were sedating...I am off every single one of them.
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When the doctors were in charge, I spent years in bed. Been there, didn't like it, don't wanna do it again. Now I can only speak for myself here.
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I decided to take charge of my life. I got to know enlightened people, people with gifts of healing. I listened. I asked questions. I did reflexology, Accupuncture, chiropractic, kinesiology.
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Ask at your local health food store. Talk to an Herbalist there...and ask for suggestions. Trust your gut...it will tell you if something someone says will help you.
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Someone told me about CBD last summer. I started taking it and realized it helped my multiple sclerosis...I stopped falling down. It took care of my nausea and my tremors.
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I take 25 mg 3 times a day. But don't start out at that...start out with 25 mg and let your body tell you when you need more...there is a group here in Mayo Clinic Connect for CBD. Go there and read your little heart out. You will be glad you did.
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I remember you are in Scotland? I don't know if its legal there, but I will take this wonderful healing plant medicine until the day I die.
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I also was told about a product that is bringing my brain back to life. It is called Ultra Colloidal Gold. Company name, Source Naturals. Cost $9.59
I receive no compensation from the company.
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What it does is wake up unused portions of your brain and repair it.
My MS is so much better. I feel better. My balance is much better...I will take this until I die also.
The third product I use us called Wild Shiaga. Company name, American Dream Nutrition. I receive no compensation. It gives me energy and repairs my immune system. Again, I will take this until I die.
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BTW, I went camping last weekend and am going camping again this weekend. I expect 50 to 75 of my friends to show up also.
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I took my life back...AND IT TAKES AN ACTION TO FEEL BETTER.
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So what does your gut tell you to do.
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I have a bunch of mottos that keep me going...
I am the Energizer Bunny...I keep going and going and going...
One foot I front of the other gets you a long long way. ..
Take an action to change your life...
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Ian, I hope this helps...and on those really difficult days...my best friend motto...FAKE IT TILL YOU MAKE IT.
I also studied how to give myself endorphins...and how to avoid negative chemical dumps...changed my life...that put me in control of how I felt...
I wish you well, Ian...Bright Wings, who is really flying now!