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Cluster Headache Help and Support >> Getting to Know Ya >> hi and new to here
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Message started by glenn rob on Dec 4th, 2012 at 8:05pm

Title: hi and new to here
Post by glenn rob on Dec 4th, 2012 at 8:05pm
i have had ch for about five year now and of late they have got a lot worst i am in a have ch about 6 weeks on and off but now i have start to fall out with friends and famliy and start to feel very alone now and not sure what to do
:-/

Title: Re: hi and new to here
Post by Bob Johnson on Dec 4th, 2012 at 9:32pm
You have an excellent support group--make contact:

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Be sure and ask them how you can get a referral to a headache clinic, by-passing your local docs.

We have had too many of your countrymen complain abou the poor quality of local docs. re. Cluster knowledge and treatment. Get to a specialist directly.

Title: Re: hi and new to here
Post by glenn rob on Dec 5th, 2012 at 6:05am
yea it is very bad in the u.k as they seen to not of hear or know the deal it

Title: Re: hi and new to here
Post by Guiseppi on Dec 8th, 2012 at 9:24am
Welcome to the board Glen. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 36years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post " Anti-Inflammatory Regimen and Survey” It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

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