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        Cluster Headache Help and Support >> Cluster Headache Specific >> Greetings, All
        
(Message started by: whart on Aug 2^nd, 2007, 9:52pm)

Title: Greetings, All
Post by whart on Aug 2^nd, 2007, 9:52pm

With due apologies for being an episodic poster (I was on the old board a few times, and the new one a couple), my last attack of CH was in 2004. This cycle started about three weeks ago, and without Sansert, my preferred prophylactic medication, I was given Nortriptoline and Topamax, neither of which did anything other than make me feel dopey. Imitrex was available, of course, to abort a headache, but as you all know, it's not a great way to live.
Went to see Dr. Newman, the guy featured in that vid from the Clusterbusters, who runs the Headache Clinic at St Luke's/Roosevelt in NYC. Got me on Prednisone as a stopgap, while ramping up on Diltiazem (new one for me, I just couldn't tolerate the Verapamil last time around).
Without dissing my other neuro, who is no doubt competent generally, but probably knows far less about clusters than the good Dr. Newman, I have already enjoyed my first night of pain free sleep in almost three weeks.
What's interesting to me since I last visited the board is the absolute fascination with hallucinogens as a treatment for clusters/migraine. I do not doubt their effectiveness, but this is not an area that I would dabble in without a knowing guide. (In the 60's, most people who 'tripped' did so with a companion who knew the ropes). Not taking a holier than thou attitude on this one, particularly given the need to deal with acute pain and the fact that "legal" drugs are no picnic either- lithium and elavil are right up there on the mood alteration list, and sansert, my drug of choice was a kissin' cousin of LSD. But, please be careful out there folks.

Title: Re: Greetings, All
Post by Rosybabe on Aug 2^nd, 2007, 9:57pm

welcome back Whart!!!

don't get lost this time, you can also post when you are pain free you know? ;)

Pain free wishes for you.

Rosy.

Title: Re: Greetings, All
Post by whart on Aug 2^nd, 2007, 10:28pm

Thanks, I realize the importance of this community when I try to explain this "thing of ours" to ordinary civilians. It is good to be here with and without the pain.

Title: Re: Greetings, All
Post by E-Double on Aug 2^nd, 2007, 10:35pm

another NYer?

We're everywhere ;)

Wishing you PF times brother and take some time to read up on what is actually reported in Neurology re: ethnogenic treatments. It's quite interesting.
I have not done this for CH but will tell you that what is being done is nothing whatsoever like what you perceive it to be.

BEst,

E

Title: Re: Greetings, All
Post by sandie99 on Aug 3^rd, 2007, 3:50am

Hi there!

I'm so sorry to hear that the beast returned to bug you. But, because you have been PF, I'm sure that you'll be PF soon again! :)

Wishing PF time your way,
Sanna

Title: Re: Greetings, All
Post by GrandPotentate on Aug 3^rd, 2007, 11:00pm

I think that nortriptoline was one of the migraine drugs that did nothing for me too. But the dopey had a side benefit - I quit smoking and didn't notice until a month later. I was happy to get off that drug, and have been not smoking for quite awhile.

Have you read up on oxygen?

Title: Re: Greetings, All
Post by whart on Aug 5^th, 2007, 10:52am

Thanks for the responses, all, including the pain free wishes. Maybe it is narcissistic interest on my part, but I am an avid reader of the various treatment regimes, at least when I am 'in cycle' and suffering.
I don't have a strong hard science or bio-chem background, but I can get the drift of most of the medical literature.
I have, over the years, tried with varied success, alot of different treatments, including the usual array of physician prescribed drugs, along with herbal remedies, various forms of acu-pressure/puncture;without pulling a Bill Clinton, my knowledge of 'underground' drugs is decades old, and frankly, had nothing whatever to do with headache treatment. E-Double: References to articles available without expensive database subscriptions would be appreciated, though.
Grand P:
I have tried oxygen, but it was not a high flow rate, non-rebreather mask, and I consumed the little bottle without aborting the headache.
Hopeful that I am nearing the end of this cycle soon, and that my drug course will succeed, a serious commitment to a proper oxygen set-up may not only be the next step for this one, but certainly a step to take for the next cycle-- whenever that occurs. (It varies, usually between 1 and 3 years- I do have pain free intermissions that last that long).

So much seems to be tied to the sinuses, perhaps not as a cause, but as an effect. I used to stick my head in our big industrial freezer at home, or (when winter was still cold in the NE), go outside in the middle of the night during an attack. The transition from hot/cold/hot seemed to expand, contract the sinus passages, perhaps in the same way that some of these vascular drugs dilate or constrict vessels. (I still don't understand how, on the one hand, Imitrex is a constrictor (abortive), channel blockers are dilators (prophylactic), but both are used in treatment). I also get at least superficial relief from highly chilled saline spray in the nostril of my headache side.
My current regime is prednisone as an intermediate while waiting for the Diltiazem to take effect. But, the headaches have punched through the prednisone and the Doc has increased the dosage as a result. I am using Imitex 4 mg injections to abort and of course they work for me. But, I have read about the possibility that Imitrex can actually exacerbate the cycle in the process of giving immediate relief.
I understand that Sansert, which has worked for me in the past, is still gettable outside of the US, but would require me to give up the Imitrex. Right now, given the course I'm on, I'll try and see this cycle through with the current medications, but I am certainly receptive to other treatment possibilities.

The other, really strange thing is this- despite the fact that as a serious nicotine junkie (I am not a 'light a cigarette and leave it in the ashtray' kind of guy, but smoke unfiltered Camels, down now to a pack a day)- I can not only tolerate smoking during a headache, but after the initial peak, a cigarette sometimes seems to help- again, something to do with dilation or constriction, at least temporarily.
I'll let you all know what I discover on this latest adventure in headache pain management. It certainly makes you realize how much of medical science still seems to be an art.