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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> non medicating question?
        
(Message started by: MJ on Oct 11^th, 2005, 11:20am)

Title: non medicating question?
Post by MJ on Oct 11^th, 2005, 11:20am

Regarding medications for clusters.

I read a site left on the welcome page, though very informative, it insinuates that "every cluster sufferer absolutely must be medicated."

Question I have is, is everyone here in agreement with that statement????

Does every sufferer take medications?
Yes or No or sometimes?

MJ

Title: Re: non medicating question?
Post by seasonalboomer on Oct 11^th, 2005, 12:25pm

on 10/11/05 at 11:20:50, MJ wrote:

Regarding medications for clusters.
I read a site left on the welcome page, though very informative, it states that "every cluster sufferer absolutely must be medicated."
Question I have is, is everyone here in agreement with that statement????
Does every sufferer take medications?
Yes or No or sometimes?

MJ

I'm not certain I've ever seen where that is written on the welcome page but a simple answer to your question is "no". The better question is whether treatments are available to help us deal with CH. To that the answer is "yes" and some of them include "medications", particularly various pharmaceuticals.

Not everyone takes pharmaceutical drugs. But some/many do, quite effectively.
For some their only "treatment" is their oxygen tank, which can also be effective.
Still others utilize "alternative treatments" which do not include pharmaceuticals.

All have their place and are worth learning more about.

Scott

Title: Re: non medicating question?
Post by Jimmy B. on Oct 11^th, 2005, 12:35pm

Completely unmedicated here....can't take triptans, O2 never worked...afraid to try the alternate method...and by the time sterioids, verapamil and the like get to helping, my cycles are just about over with.

Jimmy

Title: Re: non medicating question?
Post by Jeepgun on Oct 11^th, 2005, 2:25pm

Worst cycle I ever had, was while taking Verapamil and using Imitrex. Screw that... The mildest cycle I ever had, was using kudzu, last year. If the kudzu stops working, then screw it. I'll go "bare knuckles." I did it for seven years before I got diagnosed, except for eating my body-weight in Tylenol Sinus medication. Now that I know that it's not a brain tumor or anything like that, I'm not afraid of these headaches anymore. I dread them, but fuck it... I'm stronger than this condition, and I know the pain will pass.

My two pasetas' worth...
-Frank

Title: Re: non medicating question?
Post by Margi on Oct 11^th, 2005, 2:58pm

I'm with Scott here - where does it say that?

My husband has gone both routes. We definitely feel that meds prolong cycles and spawn more attacks (Imitrex does for sure!). He's had the longest cycle of his life this year (almost 10 months) and we're pretty sure it's the meds that prolonged things. If he doesn't go chronic and does actually get a remission this time, I'm betting he will only use oxygen and ice next cycle.

Title: Re: non medicating question?
Post by vig on Oct 11^th, 2005, 3:09pm

damned if you do, damned if you don't
I had 2 years without insurance...
with no meds....
the condition progressed the fastest of any period

Title: Re: non medicating question?
Post by Sandy_C on Oct 11^th, 2005, 3:56pm

I went first three cycles with no meds - just ice packs, water, and a lot of grim determination to get through it. Last cycle, I used Imitrex 50 mg tabs. While not as great as other meds people talk about on these boards, the tabs did help shorten the hits, and sometimes stop them altogether. I don't like taking meds of any kind. I used the Kudzu with mixed results, and next cycle, I'm seriously thinking of trying the alternative methods rather than the trex.

Sandy

Title: Re: non medicating question?
Post by MJ on Oct 11^th, 2005, 4:03pm

My error it was the getting to know you page not the welcome page.
This was the link.

http://www.brightok.net/~mnjday/chtherapy.pdf

MJ

Title: Re: non medicating question?
Post by Kris_in_SJ on Oct 11^th, 2005, 7:34pm

Hi MJ. Welcome.

The link you mentioned above is one that has been helpful to many here (myself included) when we were at our wit's end.

Personally, as an episodic, I've found Verapamil, Trex and Prednisone to be a magic elixer. I also found that my last cycle lasted longer than usual. Because of the meds? That's the question.

I recommend you do as much reading and learning as possible. That would include reading about the "alternative" mentioned above. You can read about that at the following address:

http://www.clusterbusters.com

Aside from meds or alternative treatment, there are many who get some relief from exercise, heat/cold, oxygen therapy, etc. It's all here. Search the archives.

PF Wishes and Hugs,

Kris

Title: Re: non medicating question?
Post by TxBasslady on Oct 11^th, 2005, 9:19pm

I went a year and 1/2 with no meds, but only because the CH was very sporadic. I would get hit a couple times, and then it would be a month before another. The CH was not real bad. The pain was only lasting 15 or 20 minutes. It was tolerable.

The CH progressed over time, and before long, it was intolerable. A full blown cycle, that seemed never ending convinced me that I would need the meds to keep the CH under control.

Currently I am taking Kudzu. It's been working for me since Feb. Guess I'll take it as long as it works.

Some clusterheads can't take meds, some have no luck with 02. I can't see myself enduring the pain, when there's so many things out there that will help.

PF vibes,

Jean

Title: Re: non medicating question?
Post by Gator on Oct 11^th, 2005, 10:39pm

If people don't want to go the prescription route, there's always this page from the OUCH website:

http://www.clusterheadaches.org/resources/non_script_treat.htm

Title: Re: non medicating question?
Post by Jasmyn on Oct 12^th, 2005, 12:14am

Hi MJ

I don't think any of us like our drugs in particular because of the side effects, the duration of them working or the amounts we have to take.

But like in most things concerning CH it is different for everyone and it still stays your choice.

I for one will just go onto O2 if it was available to me. I am now in a period where I ran out of meds and had to cope with the ch the old way.

We all used to do that for a number of years before we got diagnosed/meds. Water, showers, ice packs, heavy breathing(this one we all still do), Charlie's method, etc.

My problem is just that when the pain gets out off hand, with the fear, insomnia, fatigue and depression setting in that people(myself included) want to give up on life.

Again not everyone get to that point but people are individuals and their personal lives with no support is a contributing factor.

There is where this board becomes a persons saving grace. Here you can talk openly with other Chers and you WILL get advise and support.

I find this family my best medication because they always remind me that I'm not alone, that they understand fully about what I'm going through, that this will end and that we all always survive this.

Title: Re: non medicating question?
Post by chili_666 on Oct 12^th, 2005, 6:53am

Same here:

I don´t like my medication - I hate the side effects and I have the feeling that they prolong the cycle and cause more attacks.

On the other hand:

Without medication I wouldn´t be here to talk about it. I just could not take it. The fear, the insomnia, the drain on my loved ones, depression, this whole being-out-of-control-of-your-life-thing.

Sadly O² does nothing for me. No effect at all. Haven´t tried kudzu though, as I have only read about it a couple of days ago.

So I deal with the side effects, try to keep my body as healthy as can (by smoking and drinking buckets of coffee ;)) and thats it.

Chili

Title: Re: non medicating question?
Post by seasonalboomer on Oct 12^th, 2005, 10:36am

The quote you are referring to shouldn't be taken that way.

It states that all cluster headaches require "treatment". Treatment and medication are quite different. I consider the Kudzu to be a "treatment" just as I consider O2 to be a treatment. What I agree with in this statement is the idea that with many other headaches you can normally function on some (abeit diminished) level while experiencing them, thus the conception that many have that we should just take some "extra-strength something or other" and get on with it. A CH can not be ignored and thus requires some kind of treatment, is what I read it to say. This could be a bag of peas on the neck and face, it could be running till you puke, or anything, but they require something to be done.

Or, metaphorically, "the beast will not be ignored".

Just my take....

Scott

Title: Re: non medicating question?
Post by MJ on Oct 12^th, 2005, 11:33am

Dont get me wrong I think the before mentioned site is awesome in the fact that so many treatment possibilities exist for so many with clusters.

I am like many where over the years so many treatments have been tried to no avail.
Most either prolonged the agony, as some said, or made the pain much less bearable.
Some meds created for me a drug induced fog that would not allow me to deal with the pain.

I prefer the perfection of the purity of pain, know what it is and can then deal with it on a more clear and direct basis.
(of course it usually takes about two weeks of severe and constant attacks to really deal with it.)

I tend to treat on the non-attack side for a clearer battle and faster recovery as I am hit so frequently in cycle rather than attempting to treat the pain itself.

You all are great. MJ.

Title: Re: non medicating question?
Post by Maestro on Oct 13^th, 2005, 10:59am

Due to a bad heart condition I am on no meds. Thankfully Oxygen works for me. I keep it in my car as well as my home when I am in a cycle.

Title: Re: non medicating question?
Post by Gator on Oct 13^th, 2005, 3:05pm

Maestro, I'm glad the O2 is working for you. Have you checked into Zyprexa? There are people here that say it gives fairly quick relief and supposedly it can be given to heart patients in lieu of triptans. E-Double uses it. Send him a PM. I'm sure he will be happy to relate his experiences with it.

Do a search for Zyprexa or olanzapine in the links above.

If you haven't tried it, ask your doctor about it.

Edited to add: Svenn is another member with a heart condition. He uses Atacand as a preventative and has had fairly good results with it. I'm tapering off neurontin now and will be trying the atacand next, myself.