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Topic: Aftermath Concerns (Read 1663 times) |
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jenny0
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Aftermath Concerns
« on: Jan 18th, 2004, 8:54pm » |
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hi everyone, i am so new to this its unreal, but im not new to the pain and suffering....back in august of 03 i had 2 attacks that were stroke like in symptoms. only after seeing the doctor, they said i had ruptured a vessel in my head due to these cluster headaches. my concern is the aftermath, i have had issues with hand coordination, light sensitivity, hearing in my left ear, (it happened on my left side) balance and things like that. i am more concerned with the coordination thing, its quite scary and im not sure how to feel about all this crazy stuff going wrong with me. if there is someone here who might be interested in helping me, please feel free to do so. I am so glad there is a site out there for people like us, its really a trying thing to go through, bith for us and the people around us. LYG
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Jenn Jenn
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Elaine
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I had the same thing happen to me. They never said it was cluster related. I always wondered. I agree with the amount of pain and drugs it has to have some kind of aftermath.
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TxBasslady
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Re: Aftermath Concerns
« Reply #2 on: Jan 19th, 2004, 12:17am » |
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Hi Jenn,
Welcome to the board. 
Lots of good information located in the links on the left.
You didn't mention if you are currently taking any meds for the CH. Or if you took any back in August.
This board is about help, support and sharing. You will be amazed at how knowledgeable the sufferer's and supporter's are here.
Hope you find the answers you need. I, personally, do not have the ruptured nerve problem.
Stay around and post and keep us updated on your findings.
Sending pf vibes,
Jean
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jenny0
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Honey Bunches of Pain
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Re: Aftermath Concerns
« Reply #3 on: Jan 19th, 2004, 12:39am » |
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well, thank you guys for replying....im still not too sure how to navigate around this site, but im learning...my episode back in august was awful....it felt like a shot gun in my head, all i wanted to do was slice my skull and take it out...it was unbearable...and due to insurance issues, i didnt get the MRA done to see how bad it was or if it would happen again....since then i have had 'stroke' like symptoms, and im not sure what to do next....i have had migranes all my life, but now they are killer, and every day...more than once at times...on top of that , its hard to go through it alone being single....my mom is a big help, but ya dont cuddle up with her when it hurts...lol....
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Jenn Jenn
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TxBasslady
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Re: Aftermath Concerns
« Reply #4 on: Jan 19th, 2004, 12:48am » |
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Jenn,
Click on the links to the left......see the 1 that says cluster quiz? Take that quiz.....and then check out the other links too....like the cluster traits...cluster survey..and then read all the rest that you can.
There is a WEALTH of information here.....lots of remedies that work for some.
Sorry you are having such a bad time.... 
We have some folks here on the board from your neck of the woods. Check out the link on the left that says "where we live". You will find quite a few CH sufferers and supporters from that part of the US.
Hope you get some relief....real soon.
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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jenny0
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Honey Bunches of Pain
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Re: Aftermath Concerns
« Reply #5 on: Jan 19th, 2004, 1:16am » |
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thanks jean.....
i took the quiz, and all points lead to CH....there is alot of information, but im not sure what im even looking for because of the situation im in financially.....so maybe im doing the wrong thing.....i dont know anymore....it seems that every time i try to move forward, i get sent back 5 paces, no wonder im having headaches....
thank you for your info....
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Jenn Jenn
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TxBasslady
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Re: Aftermath Concerns
« Reply #6 on: Jan 19th, 2004, 1:39am » |
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Jenn,
Did the doctor give you any medications to take?? If so, what did he give you?
When was the last time you saw the doc?
I suggest that you go back and see your doctor. If you can't afford the medications, have him give you the free samples.
You say you are not sure what you are looking for....you should be looking for a solution to the head problems. If you have CH, there are alot of meds that can help to prevent and also help to abort the headaches.
If necessary, print out some of the info in the links and take to your doctor. Alot of us here have done that. It is difficult to find a doctor that is real knowledgeable about CH. It can't hurt to take the info with you.
Again, check out the "where we live" link. If you do not know of a doctor who can treat CH......maybe one of the folks that live in your area can recommend one.
Don't be shy.....send them an email, and ask questions. That is what we are all here for. Sometimes we can't help ourself, but we can help someone else. Two people here on the board that I know lives in Ma, is Ree (she is a supporter), and jonny, who is a sufferer.
They are great supporters.....and will help you with alot of years of knowledge from the suffering to the supporting.
Best wishes to you.....
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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Bob_Johnson
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Re: Aftermath Concerns
« Reply #7 on: Jan 19th, 2004, 1:51pm » |
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I understand your main concern to be with the side effects of the stroke and not with managing the clusters.
Within the last month the general news had stories about new lines or rehabilitation research which was most exciting. The core idea was: the capacity of our brain to rewire itself--witht the appropriate exercises--so that healthy parts of the brain took over functions which are impaird by the stroke.
This form of treatment may not be readily available--but because it's so new. BUT I'd surely be talking to a rehab physician about services which may be of help to you. In general, doing nothing after a stroke tends to lead to permanent loss of function. Be active in asking!
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Bob Johnson
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jenny0
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Re: Aftermath Concerns
« Reply #8 on: Jan 21st, 2004, 12:33pm » |
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thank you so much for the advice, i will definately be looking into it.....it gets really scary sometimes going through this...especially when different things are happening every day.....i am making an appointment with the doctor for some time this week.....and maybe things will turn out better than they are now....its almost considered a disability, its really hard to function at work, and try to maintain a 'normal' life......
this site is the best thing that has happened to me since this ordeal.....and i owe it all to you guys....
THANK YOU!!!!!
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Jenn Jenn
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Charlie
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Re: Aftermath Concerns
« Reply #9 on: Jan 22nd, 2004, 1:13am » |
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Glad you found us but sorry you've had such trouble. If you stick around you'll find many good ideas about handling this horror and some fun as well.
Here is a link to a technique that worked well for me:
http://www.netsync.net/users/charlies/
Let us know how you're getting along and welcome to the fold.
Charlie
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t_h_b
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Re: Aftermath Concerns
« Reply #10 on: Jan 22nd, 2004, 3:11am » |
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JennyO, a "broken blood vessel in the head" sounds like it IS a stroke whatever the cause was.
You possibly need medical treatment to prevent it from happening again and you might need physical therapy and an audiology/speech & hearing consult.
Even a mild stroke should be taken seriously and your insurance company should pay for the necessary diagnostics and treatment. Please make sure that you're getting appropriate treatment even if you or your doctor has to call or write to an MD who works at your insurance company or if you have to go to a different physician.
Your neurological situation is definitely of more immediate concern than the clusters and you might seek out a nuerologist if you don't already have one.
And if something like that happens to you again, please go straight to the ER!
Good luck....
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Jackie
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Re: Aftermath Concerns
« Reply #11 on: Jan 22nd, 2004, 12:14pm » |
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Just wanted to say welcome, JennyO.
Keep us posted on how you're doing.....
Jacks
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