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Therasa
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Hello, newbie calling....
« on: Sep 21st, 2007, 7:42am » |
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Hello, first I must say this is a great site and a wonderful group of "clusterheads" here.
I am new to the world of cluster headaches, after suffering and telling my doctor it wasn't migraines, he finally gave in and decided I have "cluster headaches". I am now on amitryptaline daily, no pain med helps at all when I have an attack. I have tried Imigran, migralieve, paracetamol, co-codamol..... nothing at all helps.
I tend to have attacks out of the blue, a pattern is emerging though, mid afternoon, after heavy lifting or physical activity..... Im not sure if that is relevant?!
I am hit with pain in the right temple on to right eye, shortest attack has been 2 hours, longest was yesterday and was 10+. No warning whatsoever. Doctor has not shown any interest in sending me for MRI or CAT, so plod on with anti-D's for now.
Hope to learn how to cope and also maybe control this.... with the help of fellow sufferers.
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DennisM1045
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Re: Hello, newbie calling....
« Reply #1 on: Sep 21st, 2007, 8:32am » |
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Hi Therasa,
Welcome! I'm glad you found us but I'm very sorry you had to.
Is this your first cycle? It doesn't sound like you are comfortable with your diagnosis. Can you seek a 2nd opinion or a referal to a Neuorolgist?
You said Imigran didn't help. Was this injectable or in pill form? If the latter then I'm not surprised. By the time the pill begins to work the attack is likely already beginning to subcide.
100% Oxygen at 15lpm is my main abortive. I back this up quickly with an energy drink. This combination will chase away anything Kip 7 or lower every time for me. If that doesn't chase the beast away I get out my Imigran injection (Imitrex here in the states) and hit it with that. Imitrex has worked for me every time within 10 minutes.
I hope you catch from PF time soon. Good luck...
-Dennis-
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Therasa
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Re: Hello, newbie calling....
« Reply #2 on: Sep 21st, 2007, 8:54am » |
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Yes this is my first cycle.
After self diagnosis I was given amitryptaline from GP. Initially, he "advised" Imigran after first few episodes as he insisted it was migraine, I knew it wasn't. The Imigran were in pill form and didn't have any effect at all, taken within first hour of a 4 hour episode. I went back looking rather ill after no sleep for 2 nights, he then prescribed the Ami.
He has no interest whatsoever and won't refer me to e neurologist as its "just a headache". He has obviously never has a CH!!!
I made an appointment to see my dentist as I know I am guaranteed a head x ray when I go there, anything untoward will show up.
Also, if its my teeth or jaw aggravating it, maybe I can get to the bottom of it.
Im 25 years old, non smoker, quite fit and active. Never suffered with headaches before, then suddenly this. I have no idea why?
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DennisM1045
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Re: Hello, newbie calling....
« Reply #3 on: Sep 21st, 2007, 9:31am » |
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I think you need a 2nd opinion. Your Dr isn't taking this seriously. It is not "just a headache". God I hate that phrase.
An X-ray at your dentist won't show any abnormalities in your brain. I don't want to scare you but you really need to see a Neurologist so other causes can be ruled out. If not through imaging, then at least through direct exam.
Find another Dr! You need a proper diagnosis and proper treatment.
-Dennis-
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Therasa
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Re: Hello, newbie calling....
« Reply #4 on: Sep 21st, 2007, 10:18am » |
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Well, after reading posts on here, and taking your advice, I called a private neurologist. Seeing as my GP won't refer me I'll go myself!
First of all, they can't believe my GP diagnosed CH with no further examination/testing. They are seeing me next week, as a matter of urgency!
Hopefully, proper treatment will be on the way for me and more hopefully, CT won't show anything more sinister.....
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LeLimey
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Re: Hello, newbie calling....
« Reply #5 on: Sep 21st, 2007, 11:43am » |
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Therasa your GP HAS to refer you - its in the NHS charter. If he refuses to refer you to a specialist (and it must be a HA specialist neuro not just any old neuro) then you should call your local PCT as he is in breach of the NHS rules and thats not on. It's your right as a patient so go get him!
I hope it helps, shout if you need anything else
Helen
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Bob_Johnson
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Re: Hello, newbie calling....
« Reply #6 on: Sep 21st, 2007, 12:35pm » |
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One of your countrymen, within the last week, mentioned that imigran injection is mandatory when you have a diagnosis of CH.
Make contact with OUCH in GB, ouchuk.org, and they will give you more assistance with your systems.
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Bob Johnson
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Jonny
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Re: Hello, newbie calling....
« Reply #7 on: Sep 21st, 2007, 6:33pm » |
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on Sep 21st, 2007, 7:42am, Therasa wrote:| longest was yesterday and was 10+. |
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10+ hours?
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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vietvet2tours
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Re: Hello, newbie calling....
« Reply #8 on: Sep 21st, 2007, 6:49pm » |
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on Sep 21st, 2007, 6:33pm, Jonny wrote: You would die.
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Kill em all let God sort em out
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Therasa
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Re: Hello, newbie calling....
« Reply #9 on: Sep 22nd, 2007, 10:14am » |
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I thought I was dying! I wanted to die!
I nearly OD'd on pills, I took everything I could, I had no idea what to do, I eventually passed out exhausted. The pain subsided over the time of the episode, but was still agony!!!
The ami Im taking now are making me feel crappy, still having very mild episodes, still feeling them, but the intensity is bearable!
Hopefully neurologist on Thursday will have some solution for me.
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thanksdad
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Re: Hello, newbie calling....
« Reply #10 on: Sep 22nd, 2007, 10:39pm » |
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Sorry new too, whats an imigran injection?
CH runs in my Dads side of family thats where my diagnosis came from but after many many tests. cat scans, mris & everything else.
Thanks Guys and hang in there fellow newbie. Remember Doctors won't usually do anything unless you insist on it!
Sheila
im on some nice morphine today for first time so ignore my grammer etc.
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