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Topic: Diagnosed yesterday, known for years. (Read 263 times) |
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willow
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Diagnosed yesterday, known for years.
« on: Apr 29th, 2006, 3:49pm » |
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Hi everyone, my name is Mel, i'm 34 and I live in the U.K. I went to my doctor's yesterday after being in a cycle for the last 10 days. I could only get an appointment with a final year medical student and my god did she listen. I was in the surgery for over an hour. Someone has finally taken notice of what i've been saying for 15 years. After being told i was suffering from migraines which i knew i wasn't, and being given countless migraine tablets that never worked. She did all kinds of basic neuro tests and finally agreed with me, i am having CH's. (I was armed with info from this site) She called in one of the doctor's and he was great too. I feel so relieved they believed me after so long. My husband thought i was going barking mad and if i'm honest i was wondering myself. My CH's aren't typical like i've read a lot of sufferers aren't. I have a constant dull ache for days or weeks which spikes to unbearable pain 2 to 3 times a day. This lasts for anything from 3 to 6 weeks. During this time i get irritable and depressed because i'm scared and tired and just feel like hell on earth. My doctor explained that a lot of headaches are diagnosed as Migraines because it's an easy option. He was pleased i went as i was an interesting case for his medical student. I told him i just want to feel well not interesting. He has prescribed me with Sumatriptan Injections, He wasn't pleased i went when he saw the cost of these. My only worry is using the damn things. I'm not scared of needles, I'd stick pins in my eyes if i thought it would take away the pain. My worry is i've only got 2 of these injections, and i don't want to waste them. Do i wait till i can stand the pain no more or take them at the start of a CH. Like my doc said there so expensive. I don't want to piss him off keep going back for more. Any advice would be great as i'm new to this injection thing. I'm just used to squashing my head in my hands untill the damn headache goes on it's own as no medication i've taken before has ever worked.
Thanks
Mel x x 
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LeLimey
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Re: Diagnosed yesterday, known for years.
« Reply #1 on: Apr 29th, 2006, 4:11pm » |
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Hi Mel, nice to meet you! I'm in the East Midlands so not all that far from you.
One thing I noticed straight away and it bears further investigation.. you say your headache is constant with spikes.. there is another condition called hemicrania continua which behaves in exactly that way and it would definitely merit further investigation.
Ask your doctor for a referral to a neuro, a headache specialist neuro at that. I see Dr Evangelou at QMC in Nottingham if that is any help and he is superb.
Sumatriptan injections, or Imigran as we call them in the UK an Imitrex on this site are a fast acting triptan, they will work in under ten minutes but they have a relatively short half life so won't prevent further hits. You should take them at the first onset of what you refer to as a spike, the longer you leave it the harder it will be to abort.
Do you get your hits at regular times of day? If so frovatriptan might be a good thing to try. Its another triptan but a tablet, it can take up to 2 hours to get into your system but then will help to block hits for up to 26 hours. The downside is you can't use it for more than a couple of days as you will find thehits will start coming back harder but its excellent for trying to guarantee a day or night of PF time.
There are many types of Triptans and whilst they all work in a similar way, by constricting blood vessels, they ARE all slightly different and the guideline is that you shouldn't take two different triptans (ie imigran and frova) within 24 hours of each other.
Within a CH attack the blood vessels in your head swell by up to ten times their normal size which is what causes the excuciating pain. as I said, triptans work by constricting those blood vessels but the downside is they also constrict other blood vessels throughout the body which can be a problem if you have any heart issues.
Oxygen is also vaso constrictor and is much kinder to your body as well as being equally effective. Breathing it at a high flow rate of 15 LPM through a non rebreather mask can abort a hit equally as quickly as Imigran but without the other effects on your body (O2 only constricts blood vessels in your head) Its much MUCH cheaper than imigran so talk to your doctor about it. (Imigran is currently £56 for a 2 dose refill!)
I think the key thing you must do now is get a referral to a HA specialist. CH is rare enough, I would think you'd need a specialist to be certain to rule in or out Hemicrania Continua. You should also have an MRI just to rule out anything else. Thats standard procedure with headache conditions.
I hope thats some help! Ask all the questions you like
Helen
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LeLimey
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Re: Diagnosed yesterday, known for years.
« Reply #2 on: Apr 29th, 2006, 4:12pm » |
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BTW.. your doctor cannot without Imigran on grounds of cost. The morbidity of the pain of ch is considered so great that would be unethical. Thats actually written in his BNF (British National Formulary or Doctors bible too!)
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willow
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Re: Diagnosed yesterday, known for years.
« Reply #3 on: Apr 29th, 2006, 4:46pm » |
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Thanks for your good advice Helen, I'll mention your advice to my doc. He's asked me to go back whether the Sumatriptan works or not. I've managed today without taking it, fingers crossed i can get through tonight too. I tend to get my headaches early morning and early afternoon but not all the time. It does vary. Like i said i've gotton through today ok. My doctor wants to discuss preventative medication but was more concerned yesterday with getting the pain sorted during an attack, as i was in such a state. Have you any advice on what to try ? From what i'm reading a lot of anti-epileptic drugs are prescribed. It all sounds mind boggling to me. Even though i've known for years something wasn't right, all this information is hard to take in. At least now, i know where to come.
Thanks
Mel x x
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LeLimey
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Re: Diagnosed yesterday, known for years.
« Reply #4 on: Apr 29th, 2006, 5:01pm » |
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Hi again Mel, how long do your cycles usually last? There is a school of thought that says preventatives lengthen cycles so my personal advice would be to hold fire on that for now. My "proper" advice is to research all the different meds and work it out with your doctor although I would suggest you don't take anything other than abortives until after you have a definitive diagnosis.
The reason for this is although alot of the headache conditions are similar and have some meds in common, some are more effective for differing things than others and we want you to have the right meds for you.
There is another website you should have a look at, OUCH UK.
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD
Its a UK Charity (there are OUCH US and OUCH CA too) which helps sufferers. There is ALOT of info there on meds which we can get, there are differences between the US and the UK in what is available and also the names used so its best to look there too.
There is also a helpline manned by volunteers who are all sufferers too. Its an answerphone, leave your name and number and someone will call you back. The number is 0161 2721702
In addition there is a support board which you can use as a non member.
http://www.clusterheadaches.org.uk/cgi-bin/yabb/YaBB.pl
If you join you'll get to use the members boards which are full of info (and other nutters like me!) We organise get togethers and stuff from time to time and there is NOTHING like meeting others who understand exactly what you're going through believe me! Joining OUCH is the best tenner I've ever spent. 
BTW, there is alot of support advice and help here AND there for your husband too.. its no fun being thepartner of a ch'er and seeing what we go through. He's very welcome to come along too.
We'll help you wade through the minefield! I remember all too well how baffling it all was at first and I was lucky to have wonderful people supporting me and helping me find my feet. The same will be here (and at OUCH) for you too
Take care, you're not alone with this okay?
Helen
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willow
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Re: Diagnosed yesterday, known for years.
« Reply #5 on: Apr 29th, 2006, 6:25pm » |
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Thanks so much Helen, you've bought tears to my eyes with your message. It's awful to say but i'm glad other people know what this is like. People just look at you as if to say, it's only a head ache. What do they know. I hope they never find out. Thanks for the helpline number and web address's. My cycle's usually last about 6 weeks, so i have another month of hell ahead of me. I hope now i have the Sumatriptan, it will be easier. Hope your managing ok and pain free.
Thanks again
Mel x x
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RichardN
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Re: Diagnosed yesterday, known for years.
« Reply #6 on: Apr 29th, 2006, 6:52pm » |
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Hi Willow
PLEASE copy the 02 info and take back to your doc. 02 is now currently recognized as abortive for CH and works for 60-70% of us to abort. I can kill the beast in minutes if used early-on in the attack.
If the 02 works for you (and it's not expensive) you can try the 02 first and use the injections for the attacks the 02 doesn't reach.
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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willow
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Re: Diagnosed yesterday, known for years.
« Reply #7 on: Apr 30th, 2006, 3:38pm » |
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Thanks for the advice. I've printed off info on o2 to take to my doctor. just been reading about shadow headaches and i think maybe this is what i have. What do you all think ? I have a constant dull ache in the back of my head and just wait for something to trigger a CH. It could be a strong smell or if i get too hot. Like many of you sufferers out there i never drink alchohol during a cluster, thats just suicide. Took my first Sumatriptan injection last night and felt a heavy feeling in my throat and chest for about 5 minutes, then quite nauseous. But within 15 minutes the headache had gone (still left with the dull feeling in the back of my head) but i got to sleep and stayed asleep all night. Hip hip hooray.
Stay strong !
Mel x x
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