HI,

New to the site, first time poster.

Was “Diagnosed“  last year with Cluster by the Doctor after 4 months of the worse seemingly perpetual headache ive ever had. 

After a few weeks I went to the quacks, where by the next 3 months consisted of various Beta Blockers, Steroids and all forms of pain killers proscribed.

Ultimately it stopped whether the concoction helped or it naturally ran its course I don’t know.

I have regular attacks still over the past year but nothing of the same length. However signs are showing that im due another big episode and so i went to the doctors again to pre empt. The doctor this time looked like he was 12 years old and proceeded to tell me about the oxygen treatment. I’m having it delivered tomorrow.

I looked on the company’s website and saw a link for this site. Frankly I don’t know if I should be pleased or devastated that there are “ others like me “.

So this s just a short message really to say hi, thanks for whoever put this together. Solidarity is always good for the soul. Especially if you’re like me and I’m sure there are others who have spent the past year thinking they are going mad and when all the tests and scans and pills don’t show anything or work. Being able to look at someone without them thinking “ Is he making that up?! “

But mostly I will tell my wife about this site. The desperation on her face on her trying to help  is sometimes unbearable. I don’t want to “ turn into another person “ but I do and if she can get some support through looking through this site then for me its all worth it.

Cheers

Lm

36 years old, married, father of two. Bournemouth. England.

Welcome to the board Lord Mogg! Bob has started you out with some great advice. I suspect more peeps from ypour side of the pond will pipe in with some more area specific advice for you. I’ve had CH for 34 years, 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

About the O2...it works best when accompanied by a nonrebreather mask (no holes and no open valves), but is nearly useless if it comes with a nasal canula. Also, while some have found relief at 15lpm, most of us find 25lpm more effective. You may need to research the internet to find that regulator. Finally, the quicker you use it to abort an attack, the more effective it is. You're trying to hyperventilate, so use the best breathing techniques for that purpose. You will love how well and quickly it works. God bless. lance