Before we get to the 25 dollar pills, let me say hot showers, after 35 years of clusters, are the absolute best relief I have ever found. It makes them bearable after a few minutes, and will usually kill them off in 10. O2, full push, like 100% oxygen from the tube is a close second.
I have tried every drug imaginable, not one has ever made a dent.  New doctor turned me on to Relpax, which is bloody expensive, but SHOP AROUND, these drug stores vary 30-40% sometimes. Aaanyway, 40 mg Relpax seems to stop headaches in 5-10 minutes, keeps them away maybe 3-5 hours or more. I'm going to experiment down to 20, then 10 mgs, 20 bucks a pill I have to. Conversely, I am going to retry Zomig. I did one 5 mg tablet last round, it shot the cluster to a solid ten, but things change, what doesn't work today, works tomorrow. Wish me luck, tune back for results, til then, curious what other poeple's experiences are with the new drugs.

Welcome,

   For most of us cold work better than hot,  as cold is a vasoconstritor.  There are a few here who say hot does it dfor them though.

You say you are using 100% from a tube?   Could you elaborate a bit more on what you are referring to as a tube?  Please tell me you don't mean a nasel cannula?  A non-rebreather mask is what we need.  Nasel cannulas are for folks who COPD or Emphasema at a  very low lpm


Linda

Glad you found a good combination that works for you!

Heat is a definite trigger for me, even stirring a steaming pot.  Heat can grow a shadow to a full blown attack in a hurry too.  So I wouldn't dare get near a hot shower or bath, but apparently some find relief with a hot shower or exercise to "redirect" the blood flow.  Really wish those worked for me as I LOVE hot baths!

The few times the hot shower does not work, I will switch it to cold for a few seconds, then back, but hot usually works, I'd figger 95%, plus I'm very clean during episodes, all spring fresh. For oxygen, I think the idea is to get as much into the blood stream, as fast as humanly possible. I have a tank and regulator, and the plastic hose. I turn on each breath, breath 100% oxygen while sucking on the end of the tube until the lungs fill, cut the flow, and hold it maybe 15 seconds. There is probably an efficiency point where the CO2 build up overtakes the pure O2, figure 15 seconds is close. If one has maybe a few minutes to go from precursor to screamer, why waste time with masks, rebreathers and 5-7 lpm? I tried the O2 generators, waste of time, no flow. O well, just popped a half tab of the Zomig, no headache coming on, just curious if it would trip one off. No problems so far. If it actually works, the VA will prescribe and fill. they won't touch the Relpax, too darn expensive.

Hi Fly,

Hot showers sometimes work for me for low level hits (up to a kip 4)...can't stand cold of any kind except AC in the face ( I sweat a lot).
O2 is what keeps me sane. And when that fails, Zomig nasal spray (5 mg) is my last resort salvation and works wonders, but can only use 3x/week.

Curious about the cost of Relpax. The Zomig is $30/per, insurance covers all but $2 of that (and I had to fight for years to get coverage).
Is Relpax that expensive?

BTW, welcome aboard and welcome HOME! No place like it!

Best,

Jon

fly gas wrote on Dec 3^rd, 2008 at 8:12pm:

plus I'm very clean during episodes, all spring fresh.

SNIFF...........I'm a total opposite  :'(........good thing I don't hug anybody including my spouse.  My cats still love me....

Never mix triptans...ever.
all the best
the bb

I have mixed Maxalt and Trex before out of necessity, but was advised against it. No problem. I was allowed to do a DHE push at hospital 12 hours after Trex also with Doc approval. Just my experience, and by no means recommended.

[smiley=twocents.gif]

Hello Jon.

Welcome home yourself, thanks for the thought.

Zomig nasal spray, interesting concept.

I've been through every drug out there, not one even put a dent in things.

The new doc gave me a freebie Relpax and Zomig, the Relpax has worked 100% so far, absolutely amazing. Calling around, the cash price for a blisterpack of 6 40 mg Relpax was high $154 from WalMart, the theives, down to $119.00 from a grocery store pharmacy. Paid to shop, guess where I went this evening. When I get one tonight, I'll try a half pill, will be curious how it does.

The big thing that worked for me was a Chiropractor/kinseologist/acupuncturist. For 20 years he works on me, keeps headaches down to maybe 5's most of the time, and episodes stop in a month, before him, they averaged 8-12 months.

Guess the big picture is to keep trying new stuff, I had these almost twenty years until I found O2, since then at least things are usually manageable.

Take er easy,

Chris

I guess the most frustrating thing about clusters, is that what works dead on today, does not work tomorrow, and vice versa. O well, Zomig experiment. My history, 40 yrs of CH, totally drug resistant, 'cept for Relpax, which seems to work, have only taken one 5 mg Zomig in my life, it took a cluster to a solid howling ten in just minutes, lasted forever, in a previous series of 4's and 5's. In the spirit of whotheheckknows, last night I tried 1/4 tab. No adverse effects, hour later did another 1/4, and after that, an hour later, did the other half. Reading another thread, I tried deep breathing O2 before I went to bed. Holy ****!!! After a week of 3X a night, NO CLUSTERS. We all know the nature of clusters, nothing is certain, everything changes, but I have 4 more Zomig's left, I will repeat this experiment until they are gone. Who knows, but after maybe 3-5 hours of sleep in the previous 72,  gotta say I'm in a pretty damn good mood this morning! Life is good...........

Well, blew this experiment. Had a beaut last night, chickened out and dropped a Relpax. Good news is that a half pill worked, 20 mg. Funny, but the price of a 20 is the same at most pharms as a 40, makes the choice obvious. Next time I'm going to try 1/4 pill, see if 10mg gives relief. Had two clusters overnight, so Relpax doesn't seem to give as long term relief as the Zomig did first try, even doing the prophylactic O2 before sleep. Keep in mind, this is all amateur self medication, no validity even pretended, but still curious if anyone else is experimenting with these drugs.

Over the last 12 years I’ve done quite a bit of experimenting with the Triptans Axert, Maxalt, Zomig, Relpax, Amerge, Frova and Imitrex. Several of them are much newer. I have strong opinions on each of them, based strictly on my repeated experience with each. WITH THE PERMISSION and under the supervision of my cardiologist and Neurologist, I have tried mixtures of several, generally limited to overlapping fast acting with long half life drugs. All of them worked to some degree. Without going into a lot detailed trials and tribulations, I offer a couple of my simple opinions, but I’m quite sure that others will report the exact opposite experiences:

A Zomig Nasal Spray is always in my pocket. If I use it at the very first hint, it works wonders. If I wait to see if it’s more than a hint – I’m screwed and it’s worthless.

Imitrex jabs are always effective and fast. I’m totally convinced that Imitrex causes me to have more hits. I avoid all forms of it now.

Amerge taken at bedtime can offer a night without hits. Half a tab before an important business meeting will get me through it.

I have not used any of the above lately, because for the most part, O2 is working the miracles I need. In addition, I’ve been working with RC seeds. I haven't had a real K9 or K10 in quite awhile, and I don't want to go back to those many years of several per day.

Marc

This Zomig experiment is getting interesting. Last two nights did 1/4 of a 5 mg pill, approx 3 hours before bed, and another 1/4 pill an hour or so before. Slept all night, although got up both mornings 7ish with a mild cluster, 2-3, and have had a few, also mild clusters in the daytime.
I see a lot of posts where Zomig can be effective as soon as people feel a headache coming on, I wonder if it can be effective proactively, ergo no precursor at all, whether to get a night's sleep, or knock down an episode.
Whatever, it is all an experiment, no validity whatsoever for anything,
but with three good nights of sleep, I've got to admit, I'm a happy camper.

Just a thought, If heat is used as a systemic vasodilator, wouldn't it essentially cause a decrease in blood volume and decrease vasodilation in the head to some degree and in turn be considered a vasoconstriction with those decreases in the skull.  I have always been a huge fan of ice, but maybe Fly is on to something.  Maybe using heat with a systemic approach is worth a try.  

And now a crazy thought...Has anybody tried hitting their O's while sitting in a hot tub?  This would not only give some defense against trying it and having it blow up in your face, err' head, but could possibly allow the body to take in more O2 with each breath being that your venous ssystem has opened up to allow higher volumes...  Call me crazy, but it is just a thought.      

Thomas

Quote:

Amerge taken at bedtime can offer a night without hits

It did for me as well Marc. I wish those that get awaken 2-3 times a night would try it. I have mentioned it on here many times in the past.

Zomig, in pill form, taken right before bed works wonders too.
I talked Blake into it a few times when he was getting hit every hour.
Amazing what even one nights sleep will do.

Jackie

Yeah, heat should not help CH, but for almost 40 years it is my first line.
Doesn't make sense, it just works.
I'm doing the Zomig pill, just cutting a 5 mg into quarters, I'm cheap, and  I hate pills, trying to take as little as is effective.
Taking any drug before a headache pops up is a new one for me, I am awed at getting three night's sleep, also after 35 years of finding no results from any drug, finding two that initially are helping me.
Crikers, maybe there is hope after all.

I've long sworn by hot showers, often turning to full cold then back again. Was getting clobbered real bad one night and got the temperatures wrong without even knowing.  Scalded my scalp and half my hair fell out.

Didn't even realise until morning.

Brian, Brian, Brian.  ;D

If the hot isn't working, I do try cold/hot back and forth. Indeterminate results, but given the nature of these things, all experiments are worth doing.
Remember a long time ago having a ten, water was too hot,
scalded my face, couldn't tell when it was happening.
Red, swolen, peeling skin for weeks,
guess all experiments are not all that good, eh?
O well, night time, off to pop another 1/4 Zomig,
hope I'm not boring the hell out of everyone, but it is such a trip
to have a drug that is actually working after all these years.
Take it easy,
Chris

wrote on Dec 7^th, 2008 at 7:26pm:

Brian, Brian, Brian.  ;D

fly gas wrote on Dec 7^th, 2008 at 8:49pm:

Remember a long time ago having a ten, water was too hot, scalded my face, couldn't tell when it was happening. Red, swolen, peeling skin for weeks,

We accept your apology, Donna, and one day I'll tell you about the night that Police found me wandering, stark naked, almost two miles from home.

AussieBrian wrote on Dec 8^th, 2008 at 8:36am:

We accept your apology, Donna, and one day I'll tell you about the night that Police found me wandering, stark naked, almost two miles from home.

I find heat helps me a lot. I use one of the rice filled microwave hot packs on the back of my head and neck on the afflicted side.

And Brian, the neighbors are most likely used to it by now…

Rolo. :D

Almost a week of no night time clusters, I'm amazed.

I'm trying a parallel experiment. Halved the Zomig doses to two 1.25 mg quarter tabs still get a night's sleep every time ( so far.....).

Some other threads also suggest that lesser doses of Triptans work as well as larger ones for some, in my case, this seems close.
With the price of this stuff, also some of the side effects, this seems like a pretty smart thing to do, as long as it works. Still getting daytime headaches, but not bad ones, oxygen and showers seem to handle them quite well.

I dunno, this all is probably not valid for everyone, but the half doses might be real helpful for the long term. Relpax and Zomig both have some heavy duty side effects, esp over time, worth surfing the FDA site for the warnings.

O well, life is good, better than some.

Fly safe out there,

Chris

Fly gas,  I'm totally with ya on the cutting the Zomig into quarters.  I just recently got low on my Rx and started that.  My CH's have shifted from hitting me in around 11:45 am about 9:45 pm.  So I take a quarter of a 5mg Zomig before hitting the sack and I'm good to go for the most part.  As long as I don't have one amping up on me I can usually catch them quick enough.  I have heard about the nasal spray too.  It's supposed to be good stuff I'm just curious on the cost?? I will say this though.  I don't condone taking meds in any way other than how they are prescibed, but I have also expiremented by taking a quarter of the Zomig and crushing it into a fine powder and putting it under my tongue like a BC powder.  The pain from these things will make you try about anything.    

Well, the experiment continues.
Of interest, last three nights I've been only doing one quarter tab, 1.25 mg.  Precisely the same effect as the whole pill was giving, last night 8 1/2 hours of sleep.
Glitch, is that for the entire period, I've been getting 4 and 7 pm afternoon ch's, steady as clockwork. Not bad ones, 5's or so, and
O2 handles half, the hot showers still work all the time.
I just had my first afternoon ch, shower beat it down, but I dropped a 1/4 tab just now, see if it kills pm ch #2.
Down to my last two Zomigs. Haven't made up my mind to buy another three, start experimenting with 1/8 pills, or go over to Relpax.

Crushing Zomig, and taking it under the tongue, Hmmmmm???
I did try a 1/4 tab under the tongue, is dissolves real quickly, don't know if you have to crush it. Maybe an idea, don't know if stomach acids decrease the efficacy of the Zomig, but the tongue might deliver a purer hit, might be a faster delivery technique, I don't know, but I'm going to try the tongue thing again.

Other than the idea this stuff is actually working, the idea that it is working at one quarter of the prescribed strength is what is getting me.

Wishing all you guys out there a PF, thanks a lot for the input.

Best,
Chris

What, does cluster make me stupid?

Zomig's have been working well for night time attacks, sleeping through, love the stuff.

3 days ago, had a fairly bad one, so decided to try a 1/4 pill at 1 PM to kill it. BIG MISTAKE. Didn't do anything for the headache, but at 3PM had a ripper, serious 8, my first this cycle, didn't really go away for hours. Then even after the night time quarter pills, had two overnight headaches and a wakeup that night.

Temporary setback, last two nights have been headache free, but while the 8 and everything else may have been coincidental, I wonder. Hypothalamus, circadian rhythm etc, etc......I'm going to be fastidious on my timing here out.

Another new experiment, I've always used showers when O2 and the rest didn't work, usually when the headache was well established, and they almost always seem to stop the growth of the headache, and would bring it to manageable of nothing in 5-15 minutes.

As I seem to have a fairly well established track of daytime headaches, yesterday I tried the hot shower as my first line, no O2, Pepsi, Red Bull or anything else.

I am mildly optimistic, as my first two headaches yesterday went nowhere, whimpy little one's. The third and last went to 4 for a little bit, but I was doing dinner and waited a bit longer.

Anyway, I'm going to stay on this track, as these things go, a fairly manageable episode.

Well, out of Zomig, doing the same experiment on 1/4 pills of Relpax, two days now things are good, no nighttime headaches, showers don't seem to be as effective as before, but oxygen after the shower handles most of the ch's.

My insurance cuts me off at something like $160.00 of these drugs a month total, finally yesterday we called them to ask why. Seems like some peculiarity in the way the prescription was written, allowed them to put the cap on. They gave us some new way for a Doctor to write the Zomig or Relpax prescription, emergency, prior approval, a few hoops, but they say the new script might cover like a pill a day, ergo more than enough to get through the month.

Waiting for a call back from the Doc, but if anyone is getting short or partially covered prescriptions, it may be worth a call to the trouble line of your insurance company.

We all have different responses to meds, but in my experience playing with fractional doses of the oral Triptans is only effective for attacks that were not going to be real killers anyway.

The obvious problem is trying to guess what is coming.