I have been coming to this site for years and it has helped a lot just to read some of the other stories and to feel like i'm not alone in my suffering. This is my first post

I am 34 years old and have been suffering from CH for about 7-8 years now, I have always had the pain behind my right eye, it has never switched. I just have a few questions.

When I first started getting CH is was episodic, only at 2 in the morning, before I knew what it was I would put bags of ice on my face and that would help some. That lasted for about 4 years, I would get them most days maybe a day or two at most in between. I went to the Dr. several times and he kept saying it was other things until I insisted on seeing a specialist and he finally referred me and the specialist said that I have CH and he prescribed O2. For a while the O2 would work but I noticed that I would get them more often, one right after another. After about 6 months with the oxygen I had become a chronic sufferer, now and for about the past 2 and a half to 3 years I have been getting them all throughout the day not just after I go to sleep, I get about 3-5 a day, in a month I may have a couple days without one. I no longer have the oxygen or any type of drugs to take. Here is where my questions come in.

Does it seam like I am a chronic CH sufferer?

Is it normal to start episodic then become chronic?

Is there anybody else that using O2 has increased the frequency?

This is odd but what I take to stop the pain when I get a CH is coffee. Normally about 2 big cups will do the trick. Has anyone else tried coffee before? My fear is that my body seams like it is getting used to the coffee and if it doesn't work anymore I will not know what to do. I have not been to the Dr. since the O2 ran out.

Any thoughts will be appreciated.

Thank you

Paul

Welcome to the board Paul.

Some episodics go chronic, some chronics go episodic, no real studies or information on why it happens.

You should consider getting to a headache specialist neuro.You're probably catching on by now that not only do they not go away, they can get worse. Using coffee and ice as your only treatments is just not taking advantage of what's out there now. It's time to get a little more proactive in your treatment, develop 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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When I first started 02 therapy I had the same problem you did with rapid re-attacks. For many years I was taking an oral cafergot when I started the 02. 02 would beat it down, cafergot would buy me up to 12 hours pain free. I now use an energy drink and it pretty much does the same thing. Seems to speed the abort and pushes the come backer attack way back, I use sugar free red bull.


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 "123 pain free days and i think I know why." 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 a long read, worth the time.

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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

Thank you so much for taking the time to read and respond. I will take a look at the other posts you mentioned and go from there.

I have tried to use the energy drinks in the past and they have not worked alone that why I have stuck to the coffee. I should go back to the Dr. sometime in January so maybe I can print out your advice and see what they recommend and also see if I can get referred to a neuro like you suggest..

Thanks again

Would suggest you print out the oxygen information and take it with you. Most docs, even neuros, are very hesitant to prescribe oxygen, especially at the flow rates we need. We've found 15 LPM is the minimum flow rate to start, with some not getting relief until 25 LPM or better.

And really suggest you give the energy drink + Oxygen a try. Energy drinks did nothing for my attacks on their own, but combined with the oxygen it's a potent 1-2 punch for me.

Joe

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Jerry

I've had some good experiences with a new Starbuck's product called DoubleShot. It's a coffee based energy drink with 1800mg Taurine. I also use Monster with 1000 mg Taurine. The Double Shot seems to work longer. It does not abort a hit by itself (for me) but works very well in conjuction with O2. Blessings. lance