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agonymum
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ive been hanging around here for a few days tryng to get a handle on some of the terms etc.. but forgive me if i appear a bit dumb, as its alot to take in .
ive stumbled on this site really in a desperate attempt to find out what is wrong with me ! i have done the quiz and felt so relieved (well sort of ) that i had found definitive answers to my pain .
i started with the ch problem ,just after september 11th (im not good with dates but i remember that one ). i had a bout of trigeminal neuralgai? on my left side , which was linked to a tooth abcess , eventually after much suffering , and tooth pulling i was given tegretol (carbamazapine) and it cleared it imediately . (am still unsure whether this period was CH or the neuralgai) anyway , after that i started with the dreaded CH problem , although all this time have not known what it is for sure till now .
sorry for the length of this , but i would lke to tell the history if i may , so anyway , the CH is always on my right side , excruciating , eye drooping , nose running . the first cycle i had i was sent to opticians , ent specialist, was told it was stress , tension , went to chiroprachter , etc.. i kept going back and to to the doctors in agony , told them i couldnt live anymore with the pain , actually thought i was dying . i finally got to seea neurologist and by that time the cycle must have ended naturally . she diagnosed migraine and told me if i got another 'migraine' , to lie in a quiet room etc,,
at this point i accepted what every professiomal told me , as i have bi-polar disorder the 'professionals ' seem to think i may overexaggerate the extent of pain and suffereing !!??'
since then i have had 2 more cycles and am hopefully just finishing a bout which has lasted 6 months , this time it has really affected my mental and physical health , i have lost a lot of weight , alot of sleep qnd it has triggered a deep depression .
again i went through tth edoctors repeatedly , and the dentist , am actaully having a tooth out this week ?then the ent specialists (camrea up my nose looking for sinus , or polyps ) was given the tegretol drug again , but unsure as ti wehther it has coincided with natural tailing off of the cycle , its been really unbearable , has totally stoppped my life , frightened to drive . go out , do anything really in casre get attack when out .
i have been eating painkillers , sinus preperations , and trying alsorts of things to help myself .
during an attack, it will wake me or start imediately at high level pain , excruciating , i cant breath properly , i think i hyperventilate threough fear , i pace , i ended up with a ritual , of drinking water , putting a boiling hot water bottle on head , rocking , nose streaming , taking painkillers , trying to smoke , pressing head with enough force to explode it , etc... then its gone , instantly , after about 3 quarters hour , to an hour . its like waking up from a nightmare , till the next time .
at the height of the cycle i get them every couple of hours and there seems no relief atall , then they go down to 3 a day , always one a night , at 3 am sometimes 4 am , depending what time i go to bed .
at the moment im having 2 a day ,one which wakes me and one at 4-5pm . they are shorter in duration and the peak of pain doesnt last as long so thats why im thinking it might be coming to its end .
ok i could write forever , but dont want to bore anyone , just to say when i read some of these posts , i cried with relief that there were people who knew what i was talking about at last , i cant tell you what that did for me , im not crazy or have a tumour after all ! - however during attack i wish 'it' would 'just take me' - anything to be unconscious .
thanks for reading , i hope to to finally get somewhere with this now and have some proper help from the docs .
lots of love xxx
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AussieBrian
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Re: hi
« Reply #1 on: Jan 15th, 2006, 4:24am » |
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What a bloody horror story and you must believe that we feel for you completely. Now's the time to sit down a take a couple of deep breaths, then treat yourself to nice hot cup of tea. Get yourself back together a bit.
There's a wealth of information here at ch.com along with lots of people ready to help you every inch of the way.
Glad the hot packs work for you but have you tried ice packs as well? I use both at the same time which is murder to some but works for me. As for over-the-counter type pain-killers they'll probably do you far more harm than good but for everybody it's simply a matter of finding out what regime works best for them.
I'd also try and get an appointment with another neurologist, one who knows a little about CH.
Most importantly, though, stay in touch.
Kindest regards,
Brian.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Barry_T_Coles
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Re: hi
« Reply #2 on: Jan 15th, 2006, 4:59am » |
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Hi welcome to CH.com your in good company here.
Reading your story is just like looking in the mirror for most of us until we find out what’s kicking our butt.
As Brian says get yourself referred to another Nuro and go armed with as much info as you can glean from here there’s a lot of health professionals out there who wouldn’t have a clue as to what you are dealing with, they need the education.
You say you are about to get another tooth pulled, could be that there may not be a problem with the tooth at all; probably a result of CH, I’ve only got one left on my ch side thinking the teeth were the problem.
Here’s a link to add to your arsenal for the Nuro.
http://www.mayoclinic.com/health/cluster-headache/DS00487
Keep us informed as to how you are going.
Kind Regards
Barry
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
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LeLimey
CH.com Alumnus
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OUCH-US - Less "ME" and more "WE"
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Re: hi
« Reply #3 on: Jan 15th, 2006, 6:23am » |
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Hi!
I'm Helen and I'm a bit south of you in Notts but not that far. I do know other ch'ers in your area who may be able to help you with suggesting other neuro's etc.
Check your instant messages (at the very top of the page) for more info.
Apart from over the counter (from now on OTC!) meds what do you have for CH? Do you have any prescribed meds at all? Have you tried Oxygen? I'm sorry to have so many questions but the more we know the more we can help you and trust me.. we will! I promise and I NEVER make promises I can't keep.
As soon as we know what you have or haven't got we can share our experiences with you and hopefully give you some more avenues to explore. None of us are doctors but we ARE expert patients!
Take care for now
love
Helen X X
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agonymum
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Re: hi
« Reply #4 on: Jan 15th, 2006, 10:04am » |
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thanks so much for your replies , it means alot to me .
ive just had another attack after falling asleep on the sofa for 10 minutes cos im so tired after last nights fiasco again , so to come out of it and get your messages has given me hope again .
i havent had any medication perscribed especially for this as i havent known what it was and neither have the docs!.
the carbamazapine (which was perscribed for neuralgia as the last doc thought it was that ) ......... i dont think it has helped .
the ice packs dont work , only the hot , i think its a case of the heat actually burning my skin on my face and head which diverts the pain somewhat , its the only thing ive found anyway which gives an inclining of relief , but not really -if that makes any sense !
ive got a ct scan booked for the 31 january by the ENT specialist , not sure what that will show up ?
also have asked my doctor if she can put me in touch with a private neurologist , but this hasnt come through yet . when it does i will be more knowledgeable due to this site and im so grateful ....
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agonymum
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Re: hi
« Reply #5 on: Jan 15th, 2006, 10:48pm » |
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just wanted to make contact really , ive been pacing for half an hour at kip7 its 3.45 am and im lonely .
very sad and very tired , going to dance more quickly and make more coffee ?
why ???? its not fair !!!!!
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Linda_Howell
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Hearing is one thing. Listening is another.
 
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Re: hi
« Reply #6 on: Jan 15th, 2006, 11:02pm » |
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Quote:| ive just had another attack after falling asleep on the sofa for 10 minutes |
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Naps are NOT allowed in Clusterville. 
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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AussieBrian
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Re: hi
« Reply #7 on: Jan 15th, 2006, 11:12pm » |
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on Jan 15th, 2006, 10:48pm, agonymum wrote:| its 3.45 am and im lonely .very sad and very tired....why ???? its not fair !!!!! |
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We know just how you feel and sympathise completely. Hang in there.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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agonymum
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Re: hi
« Reply #8 on: Jan 16th, 2006, 6:23am » |
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can i just thankyou for such a lovely warm welcome .
thankyou for the pm's too with extra help on them , i really do appreciate it .
i dont feel alone anymore and thats a true gift .......
xx
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RichardN
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Re: hi
« Reply #9 on: Jan 18th, 2006, 1:02am » |
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Hey Mum and Welcome
Do read up on and copy info about 02 and take to your doctor. Works for about 70% of us to abort an attack. I have arterie blockage and high cholesterol, so cannot take triptans . . . 02 is my only abortive and I can kill the beast in minutes if used at the onset of an attack. I can live with the beast if I don't have to "dance" with the bastard.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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