Dear CHers:
Please help. I've been having attacks every 2.5 hours. Every time I have one, it is so awful that I inject 6mg Imitrex (Sumatriptan).

According to most sources, one is allowed only 1-4 injections per every 24 hours... For me, it's 8-10 injections.

Cost aside (I am borrowing money right and left), do any of you use this much? I am terrified of dying of a heart attack or some other side effect, but I am more terrified of the pain that comes with the next attack.

Please tell me what you know about maximal dosage.

Thanks much,

Katya

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

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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'm not sure what the maximum dose is, however what I've seen written here and elsewhere suggests that the maximum is 2 6mg injections in 24 hours with at least an hours gap.

There is the imitrex tip (mentioned by Brew) that drops the 6mg down to 2mg, which is enough to be effective for most people.

However I'd also look at why you need to use so much imitrex.

Have you got a preventive, such as verapamil, lithium, topomax, etc? These can help to reduce how many CHs you get in the first place.

Have you anything else to abort a CH? Oxygen is an amazing way to abort a CH. I can abort my CHs in about 6 minutes. Oxygen is a lot, lot cheaper than imitrex, without side effects and very effective.

Tell us more about how you treat your CHs and we can give good suggestions based on practical experience.

Also where are you in the world?

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

Hi,

Thank you to all of you for your responses!

As far as abortives are concerned: I've tried oxygen, topamax, ergo-something, verapamil, prednisone, endomethacin (of what I remember). All useless. This round I've been put on a combination of namenda and lithium, which, knocking on wood, seem to have cleared me, albeit with side effects of being woozy and dizzy and with a terrible headache that hasn't gone away in 48 hours (ironic, right?)

Dear Mia: yes, that's what most have said, 2 per 24 hours. My old neurologist (now retired) used to say 4 injections are okay, 6 are a bit dangerous, but still okay. Thank you for the good vibes!

Dear Brew: thanks for the link, I already do that. However, when there are 12-14 attacks in the day, that's still 6-7 full shots. Hence my question.

Dear Joe: Yes, I've been to a lot of neurologists throughout the years (this is year number 12). I have just gone on the Namenda/Lithium cocktail and it seems to have stopped the CHs, although I'm not sure the side effects are worth it.  Oxygen doesn't work for me, plus what I usually try to do near a tank is light a match. Thanks for the links as well.

Dear Mike: I'm in New York City. Yep, on preventives now, lithium seems to have done the trick this round. I think I do the same as everyone else - go to a neurologist and try different preventives/abortives. So far I've found that Imitrex injections are the only abortives that work, and as far as preventives go, the Namenda/Lithium combination seems to work okayish (minus awful side effects).

Dear Evie: thanks for sharing your experience! Awesome that verapamil/prednisolone/oxygen worked for you. I've tried them all, no luck.

Last but most importantly: thank you to all of you for understanding this hell.

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.

It's a crap shoot with many general neurologists. You should have no trouble finding:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

@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

Drop in any time you feel we might be able to help.

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

Dear Baer,

Thanks very much, information on this website is indeed handy -- this is where I learned to split the autoinjector doses. I don't seem to respond to 2mg -- 3mg in the very least, depending on the severity of the attack, sometimes more. But still, that's better than using the full 6mg injection every time. I'm super thankful for this information to this community.

Sorry to hear lithium doesn't help you - I hope you've found something that does. I seem to like how it's cut down the episodes (in combination with Namenda - something that as I understand isn't used much, per this website) - however, I think I'm close to starting a new topic here called "How the heck to people function on lithium?"

Happy you're in remission! Hope you stay there for a long, long time!

Best wishes,

Katya

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

Manufacturer, pharmacists, doctors, patients...all have their own opinions, general consensus is no more than two 6 mg injections in a 24 hour period...every individual reacts differently.

Personally, I inject as many as it takes.  Consequences are not of consideration when I am being tortured.

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

Dear Andy,

Thanks much for sharing. I just went through four weeks of hell - with too much Imitrex, but now am down to 1-2 episodes per day, the rest is controlled with Lithium/Namenda.

I'm definitely going to give O2 another try, although am reluctant to do so as it has failed me before.

I've got to ask - where are you that you were hospitalized? In the UK based on the spelling I assume? I cannot imagine the bills I would get here for a hospitalization.

Can you tell me more about the concentration/mask type you use?

Cheers,

Katya