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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> sorry to be here
        
(Message started by: robthereaper on Dec 17^th, 2005, 2:46pm)

Title: sorry to be here
Post by robthereaper on Dec 17^th, 2005, 2:46pm

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 :) 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

Title: Re: sorry to be here
Post by Ree on Dec 17^th, 2005, 3:24pm

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

Title: Re: sorry to be here
Post by LeLimey on Dec 17^th, 2005, 3:45pm

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 (http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD) 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! ;) )
Let us know how you are getting on okay?
Helen

Title: Re: sorry to be here
Post by robthereaper on Dec 19^th, 2005, 6:11pm

no more attacks since. :D
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

Title: Re: sorry to be here
Post by Mattchew on Dec 19^th, 2005, 6:32pm

I don't know man, I don't experiance anything like what you are describing.

Title: Re: sorry to be here
Post by Ghost on Dec 19^th, 2005, 6:43pm

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.

Title: Re: sorry to be here
Post by eyes_afire on Dec 19^th, 2005, 8:30pm

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

Title: Re: sorry to be here
Post by robthereaper on Dec 20^th, 2005, 5:31am

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

Title: Re: sorry to be here
Post by robthereaper on Dec 23^rd, 2005, 10:16am

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.

Title: Re: sorry to be here
Post by E-Double on Dec 23^rd, 2005, 10:45am

Please check in and keep us updayed.

Good luck on your journey to relief!!!

Happy Holidays,

Eric

Title: Re: sorry to be here
Post by seasonalboomer on Dec 23^rd, 2005, 10:51am

on 12/23/05 at 10:16:07, robthereaper wrote:

No disrespect at all intended but after finding out news like that I'd want to play those two numbers in the lottery. [smiley=laugh.gif]

Scott

Title: Re: sorry to be here
Post by Will_Williams on Dec 29^th, 2005, 1:24am

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.