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New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello everyone
(Message started by: Banith on Dec 10th, 2005, 5:38am)

Title: Hello everyone
Post by Banith on Dec 10th, 2005, 5:38am
Hi Folks,
          Have just been diagnosed with CH.  ummm, feel a bit shell shocked yet also relieved to finally know.  Its also good to see this much support available.  I have just managed to abort an attack for the first time with sumatriptan and dihydracodine, I am sure you all understand my relief.  I am 31, but I used to get BAD headaches when I was a lot younger,,,,,but know-one believes a kids head-ache is really bad huh.   I dont really know what else to say at this point except.....PRAISE SUMATRIPTAN.

Take care folks,  speak to you all soon

Title: Re: Hello everyone
Post by Kate in Oz on Dec 10th, 2005, 7:07am
Hi Banith,

I'm sorry to hear that you've been diagnosed with CH but I guess it's good that you got a diagnosis and a drug that works for you!!  

No doubt you'll find lots of interesting reading here and plenty of support when you need it.  

Welcome.

Kate
 


Title: Re: Hello everyone
Post by LeLimey on Dec 10th, 2005, 2:02pm
hi Banith, you shouldn't need the dihydrocodeine, the sumatriptan (imigran) alone will abort and the df118's will only cause rebound headaches - not good!
Have you tried Oxygen? its my wonder drug (precisely because it isn't one!) and I can abort in as little as 5-7 minutes which is even faster than the imigran! /no side effects either.
Read up all you can, ask all the questions you want, we can and will help!
Take care
Helen

Title: Re: Hello everyone
Post by chewy on Dec 10th, 2005, 3:03pm
I'm guessing your hydrocodiaen is a fioracet or fioranol.

Useless for attacks but can make shadows manageable.

Title: Re: Hello everyone
Post by LeLimey on Dec 10th, 2005, 3:45pm
Dihydrocodeine is a semisynthetic narcotic analgesic with a potency between morphine and codeine. It acts on opioid receptors in the brain to reduce the patient's perception of pain and improve the psychological reaction to pain by reducing the associated anxiety.
Its used primarily for the relief of severe pain in cancer and other chronic conditions. It has a recognised abuse and addiction profile similar to other opioids. Tolerance to analgesic effects may develop upon repeated administration.

Title: Re: Hello everyone
Post by Banith on Dec 11th, 2005, 3:48am
Thanks for the response. Helen, I think you are right. Since I started taking the Df's I seem to keep getting a lot of pressure behind the eye but without the intense pain. I will try and just take the imigran for a few days. Thanks for that. Hey, am I likely to get immune to imigran if I take for every attack?



So much to learn.

Nick

Title: Re: Hello everyone
Post by LeLimey on Dec 11th, 2005, 6:59am
Hi Nick!
No you won't get immune to Imigran, sadly I know of people who have been using it for over ten years and its still effective for them. You ARE restricted to two a day though, I know some people use more but it IS risky (but then CH is such that I can understand it..) anyway Imigran and all the other triptans work by constricting your blood vessels, however they don't just constrict the ones in your noggin but throughout your body, hence the risk. It is potentially dangerous for anyone with heart problems.
I'd seriously suggest looking into Oxygen therapy, O2 also works by constricting the blood vessels but it has no other side effects and its natural and it works so well for most of us! I can abort in 5-7 minutes. You can get relatively small tanks as well as the big ones so it is a portable therapy. I take it everywhere! Have a look at the info here and on OUCH UK (that will tell you what you need in the UK) http://www.clusterheadaches.org.uk/home/index.cfm?address=../treatments/txt_drug_oxygen_regs_cd.cfm&added=11/08/03&code=CD and talk it over with your doctor. Its a hell of a lot cheaper than Imigran so thats bound to be a selling point with him and his budgets!
It might be worth your while considering Frovatriptan as a preventative too. It takes too long to work for it to be beneficial as an abortive (up to two hours to kick in) but if you have regular hits and can take it 2 hours or so before you are due to get hit it will give you up to 24 hours PF time. It works for some, not so well for others, but you do have to remember this affects everyone slightly differently and what works for one does nothing for another. (frova's brand name is migard and it is a prescription drug) It's also alot cheaper than imi so your doc may give you some to experiment with! I have used them at bedtime to knock out my guaranteed 2am hit for instance, not every night but those when I just oculdn't cope without sleep anymore. I've also used them for days out like weddings. I find using them every day didn't work for me but it does for others.
You might also consider looking into the alternative therapies used with alot of success by some sufferers, its your noggin, its down to you to work out what route will work best for you!
Let us know how you are getting on or if you need any more help or advice getting o2 or anything ok?
Take care
Helen

Title: Re: Hello everyone
Post by JenniferD on Dec 11th, 2005, 9:48am
Hi Banith/Nick.

Sorry you had to find us this way, but glad you're here. You will find lots of support and information here from a lot of people. Glad that your dr. got you some meds that are working for you!  Your question on becoming immune to a drug:  what works this cycle may not always work the next. Keep an open line of communication with your dr., a headache diary is a must (my opinion), and remember that you are not alone in your fight.

Welcome and wishing you peace and pain free times.
Jen


Title: Re: Hello everyone
Post by E-Double on Dec 11th, 2005, 10:05am
Hiya

This is a great resource to know like the back of your hand...print it out and give it to the doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!


If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753

If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful. I am not sure if you can get it in the UK.
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Also check out www.clusterheadaches.org.uk

Best wishes, good luck & stay as positive as you can!!!!

Eric




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