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        Cluster Headache Help and Support >> Cluster Headache Specific >> I'm Losing This Battle: New Weapons?
        
(Message started by: whart on Aug 18^th, 2007, 9:21am)

Title: I'm Losing This Battle: New Weapons?
Post by whart on Aug 18^th, 2007, 9:21am

Current regime, Prednisone, tapered off, Diltiazem 240 mg., added Indomethicn, using Imitrex 4 mg. injections to abort. Now into the end of week 6 of this cycle, and, apart from a few pain free nights (when I first started the Prednisone, then increased it at my Doctor's suggestion), the thing just keeps hitting. Last night, had a serious one while out to dinner~ something that has never happened before, my HAs usually occur shortly after sleep, and occasionally early in the am. So, including the 'dinner' headache (ever tried to listen to Indian music while in the throes?), I've had three attacks in less than 24 hours.
The other 'attribute' of this cycle is that I now seem to have a constant low grade headache over my normally affected eye; the thing enlarges and intensifies into a true attack sometimes, and at other times, 'surges' (with associated eye droop, bloodshotting, etc), then recedes without blooming into a big headache.

I could try to go back to Sansert, but that means NO Imitrex; I could ramp on Verapamil (but can't tolerate the gastrointestinal side effects which is why the Doc opted to put me on the Diltiazem instead), or try something more radical. I'd be willing to check myself into a hospital for a couple days if necessary (DHE drip?). Christ, if this keeps up, I will consider dropping acid or chewing on shrooms, something that I would, for many reasons, not even contemplate.
Any suggestions here? I know it is more art than science, and there is no one drug that works across the board, but I need to regroup here. The current regime just ain't working. (And yes, I am under a specialist's care- guy in NYC who is known for cluster treatment, etc.). Waiting to hear back from him- he is email friendly, which is helpful.

Title: Re: I'm Losing This Battle: New Weapons?
Post by barry_sword on Aug 18^th, 2007, 9:35am

Sorry you are getting nailed. I noticed you never mentioned o2. Have you considered this abortive? You say you are seeing a specialist who is known for treating CH's, so he should know all about the o2 regime.

I hope you get what you need to help with the hits.

Barry

Title: Re: I'm Losing This Battle: New Weapons?
Post by whart on Aug 18^th, 2007, 9:48am

Only tried o2 once, years ago, and it wasn't the right set-up. No harm in using it though, compared to all these drugs. I'll ask him about it- I know there's some FAQ/info re the masks and flow-rate.
thanks for reminding me.

Title: Re: I'm Losing This Battle: New Weapons?
Post by nani on Aug 18^th, 2007, 10:02am

on 08/18/07 at 09:21:04, whart wrote:

Christ, if this keeps up, I will consider dropping acid or chewing on shrooms, something that I would, for many reasons, not even contemplate.

I'm sure glad I considered it. I broke a 5 year chronic cycle by busting. It's also given me significant respite for the last 2 years, using sub hallucinogenic doses every month or two (sometimes longer).
Oxygen, with the proper set-up, works in minutes for those rare breakthrough hits.
pf wishes, nani

Title: Re: I'm Losing This Battle: New Weapons?
Post by barry_sword on Aug 18^th, 2007, 10:04am

Your very welcome. Print off the oxygen info on the left and show your Doc, it has all the stuff you will need for it to work properly for you.
I can stop a hit in 4 minutes flat at 15 lpm and a Clustermasx (a non-rebreather mask will work just fine) at the very first sign of a hit.

Barry

Title: Re: I'm Losing This Battle: New Weapons?
Post by UN solved on Aug 18^th, 2007, 10:26am

Just when you thought you tried everything, there are a dozen more things to try.

Indomethacin - If it doesn't help rather quickly (within a week), it's not going to help.

Shrooms - There are LOTS of ppl that are saying it's been very effective for them. The hardest part about that is *Detoxing* off all other meds (that means NO Imitrex)

I never would've thought in a gazillion years that Histamine would help me, but it has ! It's failed a few times and helped for 8-9 weeks once (stopping all attacks) ... That might be worth a try if you've never tried it. ($$$$)

Sansert means No Imitrex (or any other Triptans), No DHE, No shrooms.

Goodluck & I hope you find some relief soon :)

UNsolved

Title: Re: I'm Losing This Battle: New Weapons?
Post by whart on Aug 18^th, 2007, 11:16am

Thanks, all. He just prescribed Neurontin in place on the Indomethacin, with the notion that I stay on the Diltiazem.
I was sort of half-kidding about the mushrooms, etc. although the closest town to me is made up of old hippies and people driving around with Elect Gore stickers on their vans.
The doc didn't really respond to my query re O2, but I'm gonna revisit that with him, if only b/c the Imitrex has many limitations, and I'm stuck if I exceed 3 headaches a day.

Title: Re: I'm Losing This Battle: New Weapons?
Post by hikerguy on Aug 18^th, 2007, 12:16pm

I can only agree with the other poster who recommend o2 though it does not abort all ha's for me (nearly though)it knocks the pain level down a few kip points for the ones that it does not abort...good luck with finding relief from this beast
PFDAN to all................Chris

Title: Re: I'm Losing This Battle: New Weapons?
Post by phil_h on Aug 18^th, 2007, 12:27pm

Oxygen with the right equipment has been the only thing that remained effective for me...aborts about 60% or more ha's .....Make sure you print out the o2 info from here and maybe antonio's vidio would help....don't accept no on o2 fro m your md...educate him or find one that is teachable.....phil h

Title: Re: I'm Losing This Battle: New Weapons?
Post by LeLimey on Aug 18^th, 2007, 12:30pm

Hi Whart, I'm sorry you're getting kicked to hell and back. Maybe a DHE drip would be a worthwhile consideration since you aren't too sure about alternatives. Its something that has worked with great success for a lot of people however not knowing your medical history I don't know if its suitable for you but your doctor will! Its certainly worth asking about.

With regard to alternatives alot of people have had a lot of success with them and its worth considering but you need to be 100% sure in your own mind that you are willing to give it a proper try and as others have said - detox is a pig! one word of advice would be to talk to clusterbusters (www.clusterbusters.com) You mention stomach problems with verap and to get the best effects from other therapies you need to share all details like that so people can tailor make the best advice for you. Please don't go it alone. These guys have spent years compiling data and when I tried seeds were a veritable mine of information (I too have some very weird stomach problems!)

I would also add try red bull at the first sign of a hit, don't wait for it to build knock it back as fast as you can at first throb! Same goes for O2, the longer you leave it to get on it the O2 the longer it will take to work or even potentially not work. Don't be a "hero" zap it and get on with living!

Title: Re: I'm Losing This Battle: New Weapons?
Post by Patrick_A on Aug 18^th, 2007, 4:19pm

Imitrex causes Rebound HA's

Title: Re: I'm Losing This Battle: New Weapons?
Post by southwalessunshine on Aug 18^th, 2007, 4:37pm

I too have been in a bad cycle for about 6 weeks and it's a killer! I usually start off with pouring down the red bull and 2 caffeine tablets. if this doesn't work it's on to the harder stuff. i've recently been given 02(but haven't used it yet) and had a struggle getting it. Docs seem very reluctant to prescribe it, but it's side effect free and if you're lucky enough to be one of the one's it works for, then it will save you alot of money just getting that and not the very expensive other meds. I printed out all i could from this site and OUCH and my doc made the decision to give it to me from that info. It can't harm you none trying it, but if you don't try it you might miss out on the best thing for your HAs.

Title: Re: I'm Losing This Battle: New Weapons?
Post by Bob_Johnson on Aug 18^th, 2007, 4:39pm

This continues to reflect the best current thinking. Personally, I have had excellent results with Zyprexa (in the article).
---------
http://www.plainboard.com/ch/chtherapy.pdf

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

Title: Re: I'm Losing This Battle: New Weapons?
Post by Pinkfloyd on Aug 18^th, 2007, 11:56pm

on 08/18/07 at 09:21:04, whart wrote:

(And yes, I am under a specialist's care- guy in NYC who is known for cluster treatment, etc.). Waiting to hear back from him- he is email friendly, which is helpful.

No offense meant but.....if he's known for cluster treatment, it's a shame, IMHO, because that means a lot of cluster people are in his care. For you NOT to be on (or at least to have recently tried 02, prescribed correctly) tells me a lot about the doc's treatment knowledge.
He may be just the guy for you and if you're happy, and he works with you...fine...but..
No 02?
Indo?
Neurontin?
I'm not surprised the current regime isn't working...it's not much to work with.

good luck.....GET 02 and the right set up. That alone should help enough to get rid of those background headaches by breaking some of the pain cycle, give you time to clear your head, and allow your nerve endings to cool off.

Bobw

Title: Re: I'm Losing This Battle: New Weapons?
Post by whart on Aug 19^th, 2007, 5:41am

No offense taken, PF. (I like the early albums and am a big fan of Nick Mason b/c of his cars). Point taken on the O2 as well.

Title: Re: I'm Losing This Battle: New Weapons?
Post by seasonalboomer on Aug 19^th, 2007, 6:11am

on 08/18/07 at 16:19:20, Patrick_A wrote:

Imitrex causes Rebound HA's

It can but it also has been a miracle drug for too many to count. For those who believe that Imitrex has contributed or altered their CH cycle, I won't argue with you, but for the good it has done for me I pay honor to the GSK guys (dearly, mind you).

Title: Re: I'm Losing This Battle: New Weapons?
Post by UN solved on Aug 19^th, 2007, 12:21pm

I gotta agree with Scott on this one.

I wouldn't be here today if it weren't for Imitrex injections! I know I would've eaten a bullet long ago!

UNsolved

Title: Re: I'm Losing This Battle: New Weapons?
Post by whart on Aug 20^th, 2007, 8:52pm

OK, reinforcements arriving as we speak. O2 on the way, Doc still thinks I should give the Neurotin a chance-- no downside to keep taking it (no apparent side effects, other than a bit of muscle pain in my lower back, which could just as easily come from sitting on my fat ass). I also bought some Melatonin, and figure it's worth a try.
Will report back. Thanks for the support during my dark hours of doubt- I am ready to fight again!

Title: Re: I'm Losing This Battle: New Weapons?
Post by buhrly on Aug 20^th, 2007, 9:32pm

why no sansert with imitrex?

Title: Re: I'm Losing This Battle: New Weapons?
Post by whart on Aug 21^st, 2007, 7:34am

on 08/20/07 at 21:32:16, buhrly wrote:

why no sansert with imitrex?

I assume both are vascular constrictors- too much of a good thing?

Title: Re: I'm Losing This Battle: New Weapons?
Post by UN solved on Aug 21^st, 2007, 3:17pm

on 08/20/07 at 21:32:16, buhrly wrote:

why no sansert with imitrex?

Sansert + Imitrex (or DHE, other ergotamines, or other Triptans, etc) = "Double dipping" and may prove to be very harmful or even fatal ! Don't do it. can cause a 'cardiac event' !!

Goodluck & Stay safe people ! Ask your doctor for more specific info if needed !

UNsolved

Title: Re: I'm Losing This Battle: New Weapons?
Post by whart on Aug 23^rd, 2007, 7:03pm

OK, got the O2 but the vendor, who claimed he knew what a non-rebreather mask is, didn't supply one. I ordered one on the Internet that nite, but because I wanted the full benefit of the 02, I bought another mask in the city. Then, today, my Internet order arrived. Well, I got five masks for the price I paid in the city for one, so if anybody needs one of these babies, lemme know.

Meantime, the o2 works pretty good, not quite as effective as an imitrex injection, but none of the baggage, either. I have the tank on a little annex to my front porch, so i can hang, watch the river and the bicyclers and suck down pure O2. Problem seems to be that the o2 will abate a HA, but won't keep it at bay- with the Imitrex I seem to get at least six hours of HA blockage.
The HA's continue, typically two, sometimes three/24 hrs. I am ramping up more on the Neorontin, now up to 1500mg day, plus the Diltiazem at 240.
The doc and I agreed to hang in there for a couple more days. I am considering going in for a DHE drip if the cycle doesn't break, but there's no way I'm going to check into a hospital over the weekend. And, they don't have hi-speed Internet service in the rooms.
So, that's where I'm at, not really better, but still holding on and the o2 is a nice alternative to sticking needles into my ___.
Hope everybody else here is hangin in as well. Regards, and more later. Thanks again for the help, support and feedback so far.

Title: Re: I'm Losing This Battle: New Weapons?
Post by BarbaraD on Aug 24^th, 2007, 2:24pm

The O2 has been great for a lot of us at the first sign of the HA. It usually will abort one in the making. RED BULL chug a lugged at the first sign is good also.

Melatonin at night before bed (12-15 mg) - give it time to get in your system (a couple of weeks).

If you're getting hit that regular a predisone taper will sometimes help while the other meds are taking effect (neurotin etc).

I don't like the trex and use cafergot as a last resort. It seems to last longer with fewer side effects. But I only take it as a last resort when the O2 and Red Bull fail.

I'm on topamax as a prevent and it's worked miracles for me since 99 (I'm chronic). I have breakthrus, but not like it was before we discovered the topamax. You might talk to your doc about it. It has some screwy side effects for a lot of people, but a few of us swear by it. I'd advise you to take it at night before bed (regardless of what the directions say). I've found that you don't have near as many side effects that way (such as the dopey feeling or the sleepy feeling during the day).

The DHE has worked to break a cycle for me numerous times (with chronics we have high cycles and low cycles and when a high cycle hits, I usually go with the DHE when all else fails). It's horrible stuff, but it works. I've never had a drip - always had it IV every 8 hours until the cycle broke.

Hope you find your miracle cocktail soon and get some relief. Get on the O2 as soon as you feel a HA coming on - don't wait until it revs up. And don't stay on it for longer than 20 minutes at 15 liters. If it hasn't worked in that time it's not going to. I usually chug a can of Red Bull and then hit the O2.

Good luck and keep us informed on your progress.

Hugs BD

Title: Re: I'm Losing This Battle: New Weapons?
Post by whart on Aug 26^th, 2007, 1:10pm

Thanks, Barb. Already did the Prednisone taper, and the Topamax wasn't doing it for me and the side effects were NASTY- dopey feeling, i was afraid to drive i felt so out of it; the o2 works but only backs off the HA for a couple hours and it is only available to me at home, not when on the run, or at the office, etc.; the trex is the only thing that works right now, which is why I'm seriously thinking of checking myself in for the DHE drip. Thanks for the support. I keep you apprised.

Title: Re: I'm Losing This Battle: New Weapons?
Post by George_J on Sep 1^st, 2007, 2:21am

on 08/18/07 at 09:48:06, whart wrote:

For much good information on this,

http://www.ouch-us.org/medications/oxygen/o2links.htm

Download the pdf file at the bottom: Supplemental Guide to Using 02.

Best wishes,

George