Katya,

My neuro says (2) 6mg injections for every 24 hours.  There are many times when I have gone above that dosage, but never 8-10 full injections within a 24 hour period for any length of time. 

Are you on other medication right now?  (O2, steroid, Verap, etc.)

Sounds like you're really having a tough time  - sending good PF vibes your way.

Mia

Welcome to the board Katya. Are you working with a headache specialist neuro yet? We have seen the best results from doing so.  I’ve had CH for 33 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. This is the first step in reducing your dependency on the trex. A med you 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. Since discovering 02 I've all but eliminated my use of trex. 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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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.

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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

hi katya
i have just finished a bout of chs and like you i was taking 4 to 6 injections a day it is worrying but like you the pain is too much not to take the injection i dont know what the max is only that it is recommended to only take 2 in 24 hours i do know that since i started on verapamil and prednisolone the number of attacks i got reduced and i  am looking into using O2 and saving the injections for emergency sorry you're having such a bad time hope you get some relief soon

Many here contend that heavy use of Imitrex leads to a vicious cycle of rebound headaches. It sounds to me like this is what is happening to you.

You say you've tried O2. Have you tried it at 100% concentration (in other words, from a pressurized tank as opposed to a concentrator), at high flow rates (25 liters per minute or greater), and with a specialized non-rebreather mask or mouthpiece like the O₂ptimask (designed specifically for cluster headache sufferers)? If you can't answer yes to these three, you still don't know if O2 will work for you.

Lore states that O2 works for about 75% of us. I'm convinced that the other 25% haven't been doing it right.

This is not a condemnation - it is an urgent plea to give it a shot using the proper methodology.

@Brew - thanks, I have tried 02 in all different ways. Believe me, in the 12 years, I've tried quite a bit. So I actually am on the other side of your beliefs regarding the 25%...

@Bob - thanks to you as well, but I am okay with the current neurologist, he seems to be up-to-date on CH research (including non-hallucinogenic LSD, etc) -- so I think I'll stick to him for now. But hopefully your resources will help others - thanks for posting them.

Cheers to all of you, and again, thank you.

Katya

Katya,

Welcome aboard, there is a lot of very good information on this forum, sounds like you might have gotten a handle on the beast.

I too experienced rebounds and there is information on this forum on how to cut the dosage and still get results, 2 mg. subcutaneous injection worked for me. I used to break down my stat pens, learned that here as well.

Lithium was no help at all for me, but, we're all different, The Beast is random to say the least.

Information is a great tool in our quest. Stop in from time to time, we greatly appreciate any feed back, I'm currently out of cycle, thank God, but I still check back in here. I tried many Neuros. over the years, and got incredibly lucky that a very good one came to my area a few years ago, they are out there.... just takes time.

All the best,

Baer

Katya,

Thanks I've found time seems to work the best for me.... I sometimes force myself to remember this... Guiseppi AKA Joe has had very good results with Lithium however and I'm glad to hear it offers you some benefit. I too did not function well while on it.

Oxygen and a demand valve are never far from reach and I am truly thankful for that. Prednisone at one time worked and in other cycles didn't. Sancert worked well but one can't be on it for long and it's only available with a script out of Canada.

We all just keep trying and sharing and perhaps someday some one will crack the code. We can only hope....

Batch seems to be doing quite well with his anti-inflammatory regime, I'm trying that even out of cycle, you might want to give it a look on the forum.

All the best,
Baer

Katya

I've gotta say, my experience of getting up to 6 to 8 injections a day goes back some years. I ended up hospitalised and had to be taken off, till it cleared my system. The first week was hell, but then it eased and I went back to what was a more normal cycle. I had definitely been getting rebounds, getting hits within an hour of getting the last injection to work. I can't encourage you enough to break this.
More recently, I had the worst normal episode of my life, but I kept the injections down. Yeah the pain put me in hospital for a couple of weeks, but I kept to the injection limit.
Then I found this place, and I got the O2 info. I convinced the Neuro to let me give it a go. It proved a godsend on my last episode.
Hope this insight is of a little
PFDAN
Andrew