Oxygen at 15 lpm with a non-rebreather mask is #1 for me.

Has your doctor ever given you Imitrex injections to use?

It would be considered somewhat rare to apply opiates to this condition as opiates rarely offer much help to most sufferers. Are you using a neurologist that is familiar with cluster headaches?

Welcome to the site!  Sorry you needed to find it.

If you haven't tried the 02 yet, you must ASAP.  It may provide the relief you're looking for.  Make sure you hit it as soon as you can tell one's coming.

Also, you tried caffeine?  Many find it's a pretty effective abort.  Most use Red Bull - the taurine also helps.

Also, if you haven't tried melatonin yet, that's something to ask your doc about.  It's OTC, helps the sleep cycle, and for many reduces (or eliminates) the night time attack(s).

There are many, many, many drugs out there to try.  I expect you're just time short here, but doesn't sound like you've explored the preventatives much with this neuro?

The problem with the narcotics is that they don't stop the hits from coming.  After your finals, you may want to spend some time on these boards getting familiar with all the med possibilities.

Hope you can get hooked up with some 02 quick - lots of suggestions on how to do it around here if you can't get a quick scrip, a med supply store to provide it and insurance to pay for it.

Good luck!

Laurie

There's a button on the left called "medical info" and "prophylaxis" discusses preventatives.  However, since this information was put up there have been some changes in standards of treatment and research on other meds.  

Most neuros start with a prednisone taper and combine that with verapamil, which is a calcium channel blocker.  But doses are VERY specific to individuals and have a huge range!  Some people do OK with 120mg of verapamil - some people go as high as 960mg or 1200mg.

If that doesn't work, sometimes the verapamil in combination with other drugs works:  lithium works for quite a few people.  

Topomax is an anti-eleptic.  There are a number of these.  A more current version of topomax is depakote, and some people find it works for them where topomax doesn't.  Gabapentin is an older version that works for some people where topomax or depakote didn't.

There are other calcium channel blockers, and quite a few triptans.

CH is as individual as the people that suffer from it, the beast often morphs just to keep everyone on their toes, and the medical community now has a long list of meds to try.

We believed Gary's former neuro knew a lot about CH.  He gave up long before he should have.  We only know that now because of this board and his visit to a Headache Center.  Had we not seen that list of meds that was 2 pages long, we never would have known that having tried 32 meds still left a lot of options!

So.... I still stick with my original suggestion.  After you've finished your finals and the beast lets you celebrate, spend some time here and on the net learning about all the options!  You are your best advocate with any neuro.  

Laurie

MITYRARE wrote on Dec 9^th, 2008 at 11:58pm:

Ewwwww, it brings me back baaaad memories as my CH was worst until the early 30's.  But Paul is right.......I did tough it out before Imitrex became available, with useless pain killers my Dr. prescribed in desperation to ease my pain.  If you can handle it, try and try to be tough it out and get through.

Please, find the time to get O2 and learn to work with it.  And PLEASE PLEASE know your limit; when you've had enough of the pain, you had enough.  Don't feel like you're a loser.  Sometimes we need to re-arrange our priorities.

An alternative to Imitrex is Ergotomine (Cafergot). It's a vaso-constrictor (like trex) and doesn't have the side effects of trex. It works better for a lot of us without the side effects. It's an OLD drug, but worked BEFORE trex came along. Some of us still use it. (I can't handle trex).

O2 is still the first line of defense for most of us. Used correctly (check the meds page for the proper use) it will usually stop the headache in minutes for about 70% of us - most of the time without any meds.

I hate to be a naysayer, but it sounds like your doc is treating pain - not CH. Narcs are NOT the way to treat CH - just makes you goofey, but doesn't do much for the headache. You need to read up on the treatments on the med page and then be an advocate in your treatment. Topamax is good - I've been on it since 99 (take the whole dose at night before bedtime to avoid side effects), but 50 mg isn't enough to do any good if you're getting hit that bad.

Try some Red Bull at the FIRST sign of a headache - this will sometimes abort the thing before it gets going. Chug a can (don't sip it). And melatonin (12-15mg) before bedtime will help you miss the night hits (most of the time).

Let us know how you're doing.

Hugs BD

and he has not prescribed oxygen yet?  that is very odd.


Paul

Your Neuro should not be giving you opiates. I am assuming that he has diagnosed these as cluster headaches. Usually a headache lasts 30-60min., if you have nothing to combat them and you get hit sometimes 5-8 times a day. The 3-4 hours, 2-3 times a day seems strange.

It appears the Topomax is doing nothing and all the opiates is doing is knocking you out. I would taper off everything (under a doctors supervision) have him write you a script of 02 with a regulator of at least 10-15 lpm and a non rebreathable mask.

Keep a small tank outside the classroom in your car. When you feel one coming run outside and start breathing from it. Mine would back off in 5-10 minutes.

Thats my advise to you.

ohioterpes wrote on Dec 10^th, 2008 at 12:28pm:


Generally in the hospital, they are not administering the proper flow rate required for any results with Cluster headaches.

I am afraid I am with Jimi on this one. CH does differ between individuals of course, but 3-4 hour attacks, several times a day, every day suggests other headache types more readily than CH.

Also, I understand GP's getting desperate and prescribing opiates and narcotics, they tried to with me before I "educated" them but they are almost never a good answer to a headache condition.

ohioterpes- I don't want to sound patronising and old, but you are very young to be taking such powerful and habit forming drugs every day and they themselves could even be creating some of the pain.

Would it be possible to go back to square one and describe your headaches, what the pain feels like to you and where exactly it is as descriptively as you can? what helps you when you have them, any other symptoms you get?

We can't diagnose here but we could steer you towards some other information if there is a chance of some other treatments working instead of opiates. I also don't want to be rude about your neuro but if they think opiates and normal flow rate 02 are the answer for you, I would seriously doubt how clued up they are.

Wendy

pubgirl wrote on Dec 10^th, 2008 at 5:45pm:


Wendy, I am of the same thought as you on this one. The CH diagnosis may not be iron clad considering the treatments administered ( i would get a second opinion from a neuro starting from scratch..no disrespect to the neuro here but in the interest of the young lads health) I hope his parents sift through these posts with him and consider some of the options for best long term care and health.

That being said....there are cases where these headaches do manifest for long durations....mine first lasted 3-4 hours all during my early twenties....the best neuro in the country were assembled and consulted on my case to run tests, diagnose and study me for years...eventually the headaches morphed into "classic" attacks of 45 min to 1 1/2 hour with "instant on" and almost "instant off" speed several times throughout the night time in my late twenties and early thirties, it was also during this time that the electric shock neurological shooting pains throughout my cranium known as "Tic" became a worse terror than the CH since it became more unpredictable ( at least i could predict the CH), In my 40s the length of my CH attacks again began to elongate into regulary over 2 hours and now occassionaly i get the dreaded "long attack" of my youth.
Non typical to be sure..Cluster....so says all the neuros and university med neuro students that have treated me and studied me over 30 years.
I'll just call them headaches



Paul

i recommend you get a dr note to your prof and retake the finals at a later date b/f next semester. I can't imagine trying to focus on a final let alone having to read.

It could be that the pain killers are extending the duration of the attacks...

Would you be willing to forgo the pain killers and ask your doc for O2 as an abortive with the correct mask and flow rate?  Perhaps for the back pain you could take a stronger naproxem sodium (if they have such a thing) as it's less likely to cause rebounds.