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Posts (16)

Wed, Mar 6 10:35pm · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

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!

Sun, Jan 27 6:32pm · extreme outer ear pain in Ear, Nose & Throat (ENT)

Did your Dr. give you any antibiotics for the infection? If so, did the ear pain subside during that time?

Mon, Jan 7 6:23pm · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

I agree with everyone too!! Even though I don't think my stroke was not quite as damaging as some of you, I still feel the same things. I think that is why I hate winter so much now and work is not fun anymore, it truly is work and then some! To bad we all couldn't go have lunch together someday! Take Care!!

Tue, Jan 1 5:00pm · Throat pain right side only, sore right ear, nose sores 4 months in Ear, Nose & Throat (ENT)

Thanks for the advice! I do go to Chiropractor from time to time. But the last time I went for neck pain and dizziness, they would not work on my neck at all, because they seemed to all of a sudden decided if one manipulates the C5 – C6 area, it is possible to injury tiny blood vessels in that area, which in turn causes tiny clots, which might travel and cause a stroke.
Because I had a previous stroke, they were even more nervous to work on me, in that area.
Then for me, using a PT or massage therapist does work out very well for me, just because of my work, travel a fair amount and find it hard to be home when have appointments. Have to cancel most of the time. When can't try it on a consistence basis, it does not seem fair to either of us.

Dec 31, 2018 · Throat pain right side only, sore right ear, nose sores 4 months in Ear, Nose & Throat (ENT)

Kind of interesting that you mentioned the issue with C5 and C6, I also have an issue with that area. They called mine congenital fusion, meaning it was that way since birth. I don't really buy that, because I had a very nasty car accident in 1981. They only did regular x-ray at that time, really did not should the fusion, so???
I have always keep this in the back of my mind and felt that it has something to do with headaches/dizziness/swallowing issues and etc. After enough pain and complaining, I finally got a Dr to order an MRI (which showed the fusion), Because of the fusion, we still don't know what nerves might be effected, pinched or compressed. Wearing a motor cycle helmet seems to bother the most, adding weight to that area of the neck.
They say there is nothing we can do at this point, just live with it!
I should not complain I guess, can still walk, talk, eat and pretty much do everything I want, so it is what it is!

Dec 31, 2018 · extreme outer ear pain in Ear, Nose & Throat (ENT)

I am going to ask the clinic I go to for name of the anti, I took. Not sure if that was what helped, but issue went away. It has been a no. of years ago.
Have you ever considered a Chinese herbalist Dr? Sometimes herbs do more good that all the meds we are told to take. (please keep in mind, do not stop taking meds without consulting professionals). Some of these Dr.'s also do acupuncture, which might help??
One more question. Is it possible to talk to people on phone or in a group setting, in person. I happen to live somewhat close to Rochester.
Good Luck!

Dec 29, 2018 · extreme outer ear pain in Ear, Nose & Throat (ENT)

This is going to sound crazy, but I experienced the same kind of pain you are talking about, hurt so bad one could not even touch the other edge of my ear. After a few different doctors, a younger internal med Dr, said it was inflammation of the main artery in my neck, on the side effected. Put me on fairly strong antibiotics and it went away. If your still dealing with it, might not hurt to ask!

Dec 29, 2018 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

Yes. still have some headaches, but Propranolol does help a fair amount. I wonder if most of us are not just frustrated, like with any other brain injury, maybe things can never be normal again? I think I have learned to except that, but does not mean I like it! I think I could personally deal with pain and etc, but what bothers me more is lack of enjoyment in anything I try to do for fun or my own personal pleasure. It is just like I am numb to the world going on around me.
No I do not really worry about another stroke. It bothers me that the Dr's were not able to tell me what caused the stroke and the being told each year that goes by, that I just have to live with it. Sorry, there is nothing we can do! I feel bad for the others posting on here that were effected much more by their strokes than me. I wish I could help others in some way, but I think our system might need to change first. Doctors just simply, do not have enough hours in the day to listen closely enough to what their patients are trying to tell them.
I feel like if I bring in a list (so I don't forget to ask about the main questions or concerns at a Dr visit), they look at us like, OK another one of these people bringing a long list of stupid questions! It is kind of disappointing for many of us, if that happens! I am beginning to think that we all have to figure a lot of these things out for ourselves, so we can help others in some way.
Throwing pills at things, is most likely is not a cure, it is just a temporary fix or bandage.
Sorry if I now seem like a winier, but I am a fixer type person that likes to fix and put stuff back together like it was when it was new and it doesn't seem like that happens much anymore!
I wish the best to everyone else posting on here, kept the faith and keep working at it! Maybe together we can figure out a better way to improve things for ourselves!