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   Author  Topic: sorry to be here  (Read 1468 times)
robthereaper
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sorry to be here
« on: Dec 17th, 2005, 2:46pm »
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i am sure you all wish you were on ebay not here. but here we find ourselves. i live in the uk and had my first cluster in 1998. having been told at the hospital that it wasnt a stroke and was only a migrane i didnt expect the second one a few hours later. my wife at the time told me that i was screaming and pulling my hair out, this i dont remember. my wife was being treated for breast cancer at the time and i was having a hard time at work so it was very easy to point the finger at my stress levels, however, they only seemed to come when a stressfull situation had come to an end, i now believe this to be normal. i visited my gp and was given a course of drugs, dont know what, which seemed to get on top of the attacks. i suffered them for 6 months then they stopped as quick as they started.  
until yesterday.
my wife died and i am now getting remarried in june 06/ my whole life has changed. so it came as a shock when my girlfriends face started to blur out last night. she became upset as after half an hour i couldnt remember her name, or mine for that matter.  
i didnt make it to work and my boss phoned today to see if my headache was better Smiley    i printed out some things i found on your site for him.
i hope that this was just a reminder for me as up to now it has only happened yesterday for 2 attacks. i hope i dont ever need to update this.
my thoughts are with you.
 
rob
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Re: sorry to be here
« Reply #1 on: Dec 17th, 2005, 3:24pm »
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hmmmm  I don't know many people here whose eye sight blurrs out.... though I do have Occipital migraine besides regular migraine and that does make you blind in one eye... I also don't know many people here that cannot remember someones name in the course of an attack.  Though you could be suffering from Cluster Headache also Im sure these symptoms are caused by something else.  I am so sorry you are here also for the fact that you are suffering so... Good luck and God bless Read the information on the site to see if it can help... Ree
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Re: sorry to be here
« Reply #2 on: Dec 17th, 2005, 3:45pm »
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Hi Rob,
Nice to meet you but sorry its here, I see you are "almost" a neighbour.. I'm in Bingham which is about 30 miles from you. What meds are you on if any for CH? There is a lot of help we can give you but obviously we want to know what you've either tried or used and if it was effective or not. We're not doctors but we can share the experiences we have which will help you hopefully.
Read as much as you can is the best advice I can give. Be aware of all the meds available to you and be proactive in your treatment. Not many doctors know much about CH and you will probably already know you have to do most of the educating!
Have a look at the info on OUCH UK too, its very useful in that alot of drug names change between the US and the UK. There is also a helpline you can ring for advice, its an answerphone so leave your name and number and one of the helpline volunteers (who are all ch'ers themselves) will get back to you.
Ask all the questions you want, the only stupid question is the one you wanted to ask and didn't (you can't make more of a fool of yourself than I have!  Wink )
Let us know how you are getting on okay?
Helen
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robthereaper
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Re: sorry to be here
« Reply #3 on: Dec 19th, 2005, 6:11pm »
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no more attacks since. Cheesy
i know when i am getting an attack because my sight starts to blur but only in the dead center of my vision. i am then shown a very colourfull light show (migrain you shout). i beg to differ, my sister gets migrains so i know. i have discribed it as a spinning crystal windmill.  then my brain stops. mainly the speach, words, names ect part of it (tumor i hear you shout). but this only lasts for half an hour. then my brain starts to work again and i get a tingling in my face and right hand (alien abduction i hear you shout). then the most intense pain i have ever fealt for another half an hour. when this eases i am left with a very bad but "normal" headache. i believe i was diagnose with a CH because this repeats 2,3 of 4 times in 1 attack.
i am not on any meds at the moment as this was my first attack for a few years and i am hoping it was a 1 off.
what i think causes mine are:
lots of redbull
sometimes alcohol but only a small amount
relief from high stress levels
bright light im my eyes from high to my right.
i now avoid all these things and it seems to have worked untill friday, when insidently i was working on my car headlights and maybe got a shine.
 
any input from you all about the brain not working bit as i seem to be the only 1 with this.
 
be well
 
rob
« Last Edit: Dec 19th, 2005, 6:17pm by robthereaper » IP Logged
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Re: sorry to be here
« Reply #4 on: Dec 19th, 2005, 6:32pm »
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I don't know man, I don't experiance anything like what you are describing.
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Re: sorry to be here
« Reply #5 on: Dec 19th, 2005, 6:43pm »
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Im with chew Matt ch's as far as i know dont usually repeat several times during 1 attack its usually several attacks during a ady/week/what ever, with a break between, unless heavy shadows. also the light and color thing good luck convincing anyone here, as for me no but you never know. I do hope you find a solution but I am afraid may not be CH, but again I am not a doc so my opinion aint worth squat.
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Re: sorry to be here
« Reply #6 on: Dec 19th, 2005, 8:30pm »
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Quote:
i am then shown a very colourfull light show (migrain you shout).

 
Well... actually, it does sound very very much like ocular migraine:
 
http://www.headaches.org/consumer/topicsheets/ocularmigraine.html
 
http://www.eyeguys.net/ocularmigraine.html
 
http://www.eugeneeyecare.com/conditions/Ophthalmic_Migraine.html
 
Ocular migraines (sometimes called retinal or ophthalmic) are quite different from more typical migraines but the symptoms are very distinctive.
 
--- Steve
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robthereaper
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Re: sorry to be here
« Reply #7 on: Dec 20th, 2005, 5:31am »
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thnx for your replies guys. it gives me more ammo to take to the docs so they cant just say its CH. still not had another attack yet. in the past id have had maybe 3 by now so fingers crossed that it was a isolated attack.  
 
be well
 
rob
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robthereaper
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Re: sorry to be here
« Reply #8 on: Dec 23rd, 2005, 10:16am »
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well you have been proved right. i no longer believe i am suffering from CH. after much surfing and scaring myself silly, cos symptoms pointed to mini strokes, i tracked all my symptoms to familiar hemiplegic migraines. appointment been made at doctors but as my dad once suffered an attack like mine this all fits together. for anyone interested it is a defect in 1 and 19 chromosones. think this makes me the missing link.
 
so i suppose you will all have to go on without me.
 
be well
 
rob.
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Re: sorry to be here
« Reply #9 on: Dec 23rd, 2005, 10:45am »
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Please check in and keep us updayed.
 
Good luck on your journey to relief!!!
 
Happy Holidays,
 
Eric
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Re: sorry to be here
« Reply #10 on: Dec 23rd, 2005, 10:51am »
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on Dec 23rd, 2005, 10:16am, robthereaper wrote:
well you have been proved right. i no longer believe i am suffering from CH. after much surfing and scaring myself silly, cos symptoms pointed to mini strokes, i tracked all my symptoms to familiar hemiplegic migraines. appointment been made at doctors but as my dad once suffered an attack like mine this all fits together. for anyone interested it is a defect in 1 and 19 chromosones. think this makes me the missing link.
 
so i suppose you will all have to go on without me.
 
be well
 
rob.

 
No disrespect at all intended but after finding out news like that I'd want to play those two numbers in the lottery.  laugh
 
Scott
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Re: sorry to be here
« Reply #11 on: Dec 29th, 2005, 1:24am »
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I was reading a poster today in my Neurologists office, and that sounds like Mild Alzheimer's. You may wanna get a better understanding of what your symptoms mean. Good luck with everything, hopefully its not that though.
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