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hello (Read 1049 times)

chrismckee CH.com Newbie Offline I Love CH.com! Posts: 2 Gender:	hello Feb 5^th, 2012 at 4:08pm my name is chris. ive just recently been diagnosed as a cluster head. im going on six week of the most dreadful suffering. twice a day 3 to 6 hours an episode. it leaves me exhausted. does it ever end?
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Guiseppi

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Re: hello
Reply #1 - Feb 5^th, 2012 at 5:24pm

Yes and no. Undecided

Each attack ends. Each cycle ends. But having cluster headaches tends to be a lifetime affliction. Are you working with a knowledgeable headache specialist neurologist? There are too many effective prevents and abortives, mainstream medicine and otherwise, to just sit and hurt. Have you been prescribed high flow oxygen yet? Give us a rundown of your current treatment regimen. It'll speak volumes as to your doc's knowledge.

Glad you found us hope we can help you kick beasty's ass.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Mike NZ

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Oxygen rocks! D3 too!

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Re: hello
Reply #2 - Feb 5^th, 2012 at 6:26pm

Hi Chris

Since your CHs last 3 to 6 hours it very much sounds like you've got nothing yet to effectively abort a CH when you get one. Oxygen (see the link on the left) is amazing at aborting CHs. I can normally kill mine off in about 6 minutes or less, which is a life changer for dealing with CH.

Similarly, have you got any preventive medication, like verapamil, lithium or topomax to prevent CHs from happening?

Working with a headache specialist is essential to get the best treatment that is effective.

Keep reading and asking questions.

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Purple (head404)

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Re: hello
Reply #3 - Feb 5^th, 2012 at 7:16pm

Hi chris,
Yes, more details about what professional you're seeing and what meds you were prescribed would help helping you.
3 to 6 hours hits... that sounds like the times when I was clueless as to what was wrong with me, just a rag doll in the hands of the beast. That's terrible and you CAN do something about it.
Many of us went without proper meds for years and developed ways to abort the CH when they hit. I never tried oxygen but it is what most people here will recommend first hand.
Coffee and Ice for me usually do the trick within 10-20 minutes, but that's only 'usually'. That is 3 strong coffees one after the other and ice applied where the pain is.
Energy drinks certainly help a lot aborting a CH also, but I rather coffee, myself. Some say the taurine in the Energy drinks... I also found a certain state of mind to be in as I feel one coming: retreat all alone, no distractions and concentrate on the fight... but that's me...
Then, there are very efficient ways of aborting a CH, and that's the triptans: Imitrex, Zomig... (there are many kinds) either a shot or a nasal spray. They usually work very good but are quite expensive. I would recommend you get some of that, although for me this is last resort as I hate taking meds.
There are different preventive meds and they work, although they do have strong side effects. I was on verapamil (720mg) and lithium (900mg).

But then, there is also Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

, where you will find discussions about alternative methods to end the cycle. It worked for me

. Discovered that 3 weeks ago and I'm very happy I did.
It might not "end", although we certainly all wish it does, but there are ways to tame the beast. Please feel free to ask many questions. I did and received generous support, here and on CB.com

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chrismckee

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Re: hello
Reply #4 - Feb 9^th, 2012 at 1:09am

so far... 900mg of neurontin daily. 800 ibuprofen,pain meds,imitrex and started oxygen therapy today. none of which is working.it seems like all they have done for me is change the time of day they pain starts. the neurologist has a couple of patients. he says he has good results from these meds but i seem to be a challenge. he wants to try botox injections next. I'm glad i have someone to relate to. no one seems to quite understand what i'm going through. i hear people say "oh yeah. i have migraines or i get headaches too." there is no way to accurately describe the pain. only the people that see me when i'm down get an idea of the dreadful suffering. i live in a very small town in fl. the closest neurologists are fifty and eighty miles from me. I'm hoping through the experience of others will help me educate the docs i'm seeing and bring me closer to a treatment that works for me. thank all of you oh so much for being there and i'm truly sorry that you all are afflicted by this horrible disorder.

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wimsey1

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Re: hello
Reply #5 - Feb 9^th, 2012 at 7:58am

Quote:

900mg of neurontin daily. 800 ibuprofen,pain meds,imitrex and started oxygen therapy today.

That's a lot of neurontin. And while it is an old line intervention for all kinds of body pains, it has little to no effect on CHs. It just makes you care a little less about things, including pain. Nothing you list is actually effective for CHs except the imitrex. Unless those are tablets and not injections, as I suspect. And given this list, I'm concerned your O2 is going to be at so low a flow rate as to be ineffective as well. If this is the treatment plan your doctor thinks best, then I'm sorry to say he knows next to nothing about treating your disease. Educate him, or get a different doc.

You need three lines of meds, or interventions:
a long term preventative (verapamil, topamax, lithium)
a medium term intervention (prednisone taper)
effective abortives: triptan injectables, DHE and derivatives, and high flow O2 with a nonrebreather mask.

There are other means, including clusterbusting, as well. The thing is, right now, this is the most commonly effective regimen reported by thousands of us. And recognized in the medical community that knows our suffering.

You don't need to go on suffering without help, but it sounds like you do need a good doc. The pain meds are too slow and generally have no effect on our level of pain. I hope some of this helps get you on track. God bless. lance

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