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        New Message Board Archives >> Jan-Mar 2003 >> Are any episodics med-free?
        
(Message started by: brain_cramps on Feb 26^th, 2003, 2:09pm)

Title: Are any episodics med-free?
Post by brain_cramps on Feb 26^th, 2003, 2:09pm

I've noticed a few people mention lately that they don't take anything for their CHs.

I've had CHs for about 20 years but am relatively lucky because I have short cycles.

When I first got hit, my cycle lasted about 8 weeks. It was like that every 18 months until about 5 to 7 years ago.

Every time they hit, I'd have to schedule a doctor's appt, WAIT, get referred to a neuro, WAIT MORE, and when I'd get to see the neuro, they would be gone. (Yes, I've been diagnosed 3 times.)

Since 5 to 7 years ago (bad memory ::) ), I've been in an ongoing battle with the taxman and subsequently gov't healthcare. >:(

At that time I decided to go med-free. It's not an easy choice to make, but beats the shit out of 'daily double-demerol'. Since then my cycles have been getting shorter and shorter. The last one, ending in October, lasted about 2 1/2 weeks. :D

I'm wondering if anyone else has had the same experience OR if I'm just lucky.

Any comments?

grant

PS - Med-free is definitely a tough route to take and is not for everyone. I'm hoping to have oxygen before the next time they hit.

Title: Re: Are any episodics med-free?
Post by wip5150 on Feb 26^th, 2003, 2:31pm

I had to go drug free during my last cycle (February - March 2002) due to the fact my wife and I were going through InVitro Fertilization and my "man juice" couldn't have any meds.

Not so surprising, my headahches were far more painful than usual. However, the cycle was the shortest I can remember (4 weeks). Not sure what that means, but that's my experience.

Title: Re: Are any episodics med-free?
Post by echo on Feb 26^th, 2003, 2:39pm

I am on a break from preventative meds at the time. Seemed like I was building up a tolerance and nothing individually or combined seemed to do the job.

This recent rollercoaster of a cycle I've been on are making me rethink my position. Meanwhile I reach for the abortives and hangon for the ride.

Title: Re: Are any episodics med-free?
Post by brain_cramps on Feb 26^th, 2003, 2:43pm

on 02/26/03 at 14:31:36, wip5150 wrote:

Not so surprising, my headahches were far more painful than usual.

definitely a shortcoming or downfall of this route :o

Title: Re: Are any episodics med-free?
Post by jonny on Feb 26^th, 2003, 2:44pm

First 14 out of my 27 chronic years were med free, I will never go back to that.

Give me meds or give me death!!!!

..........................jonny

Title: Re: Are any episodics med-free?
Post by Ann on Feb 26^th, 2003, 2:44pm

I was/am episodic..now wondering after this last year of hell, if I'm not chronic. I tried to taper off my verapamil last week and got hit. Not going there again. I think if it weren't for my meds, I'd be getting hit left and right. Now I only get hit once in a while out of the blue. I like it that way! ;D

hugs
Ann

Title: Re: Are any episodics med-free?
Post by brain_cramps on Feb 26^th, 2003, 2:46pm

on 02/26/03 at 14:44:16, jonny wrote:

First 14 out of my 27 chronic years were med free, I will never go back to that.

Give me meds or give me death!!!!

..........................jonny

Sheeeeyittt jonny. I knew you'd show up. ;)

I realize it would be VERY different for someone who is chronic.

Title: Re: Are any episodics med-free?
Post by JDH on Feb 26^th, 2003, 3:27pm

I couldn't even imagine fighting this anymore with no meds. I did it for the first 10 years or so (due to lack of knowledge and a Dr who didn't know sh*t about CH's) but I'm getting way too old for that kind of fight...it just takes too much out of you.
Jim

Title: Re: Are any episodics med-free?
Post by Roxy on Feb 26^th, 2003, 4:23pm

I went 14 mths. med and 02 free as a chronic (not a fun thing). Ironically, it has been since I started taking the meds that I am just getting pounded (this has been even less fun). I don’t think it’s the meds doing it, I think it’s just some bizarre cycle within my chronicness.

Now the trex is a different story….they would have to take that away over my dead body!!

I really respect all of ya’ll who do this med free….you’re a better man than me..... ;) ;D

Title: Re: Are any episodics med-free?
Post by cbolony on Feb 26^th, 2003, 4:55pm

went 5 yrs no meds 3-4 cycles a yr 6-8 wks each cycle
fuck that i need my imitrex,o2,verapamil can't take the pain anymore

Title: Re: Are any episodics med-free?
Post by Roxy on Feb 26^th, 2003, 5:13pm

I've been thinking....(I know, scary thought)

Since my ch's have gotten worse with the meds, and brain_cramps have gotten better (well, shorter cycle)...

Is there a correlation here? ???

Any ideas out there?

Tracey

Title: Re: Are any episodics med-free?
Post by NotH20 on Feb 26^th, 2003, 5:27pm

Grant, my cycles run about every 18 months - 2 years and I'll take any and all meds I can during the cycle. Lucky for me I get to come off all meds when out of cycle to give my body a rest. I've now been med free for almost a year. It feels good, but I know the other shoe is going to drop before the end of the year and it will be another 4 months of HELL! >:(

Mia

Title: Re: Are any episodics med-free?
Post by brain_cramps on Feb 26^th, 2003, 5:27pm

Thx Roxy!

My point wasn't about the pain (who can take how much)

It was about the length of cycle.
8wks --> 6wks --> 4 wks --> 3 wks --> 2.5wks

Food for thought.

grant

Title: Re: Are any episodics med-free?
Post by domm on Feb 26^th, 2003, 6:39pm

brain - first cycle - pretty much med free (used a bit of Imitrex towards the end of it) - was 8 weeks. Second cycle - using Imitrex and elavil - 16 weeks. Third cycle - Imitrex, oxygen and finally Verapamil - cut short at 7 - 8 weeks from the Vera.

I am out of cycle and am med - free. ;)
This idea - that meds lengthen the cycle - has been posed before and is (IMHO) probable. The issue seems to lead back to getting the hypothalmus to "reset" and start doing its job more effectively / consistantly. Using meds seems to allow the hypothalmus to stay lazy. Remember, I am not a doctor, but I sometimes like to play one with my wife.
PFDANs
domm

Title: Re: Are any episodics med-free?
Post by suzy617 on Feb 26^th, 2003, 6:53pm

Hi Grant,
I'm going on 22 yrs with CH. First 20 years were med free. I notice no difference in duration of my cycles with or without the meds, 6-8 weeks always.

I'm with JDH, too old to fight the beast, med free now so I'll stick with the imitrex as long as it sticks with me.

suzy

Title: Re: Are any episodics med-free?
Post by kim on Feb 26^th, 2003, 7:00pm

Been round the globe on this one: answer: I dunno :D

........sssssssssssso: the only thing that keeps ole kimmer on the med trail is that someday somthin might jes werk......... ???Mo Betta ???

Hang in :)

Title: Re: Are any episodics med-free?
Post by Lori on Feb 26^th, 2003, 7:19pm

The first 12 yrs of having Ch's was without meds because of lack of knowledge or a doc who knew squat and my cycles always were 6 weeks of hell. This last cycle finally found CH.com and got myself to a neuro and on prev. and abortive meds and my cycle lasted 3 months. I must say though that this last cycle with meds was so much less painful than all past..so I'd choose long cycle w/meds anyday over no meds if the meds indeed did increase length of cycle. I just could not go back to that pain knowing there are things out there to help..especially after all those years of feeling so helpless.

Title: Re: Are any episodics med-free?
Post by cootie on Feb 26^th, 2003, 7:34pm

First few years of Brad's CH he went med free cuz no one knew what the deal was....most doc's gave him the traditional sinus infection speech and meds or tranquillizers he never took....he got hit hard a few times a day for a long time (attacks lasted an hour or two)....once on meds he got into a cycle with 2 to 3 years break. But this last cycle was about 7 weeks and he got hit several times a day (attacks didn't last 'as' long tho as usual) with lots and lots of shadows...not sure what that all means...guess maybe he started out chronic....we were young and dumb blah blah blah...didn't have a clue what was goin on or who to turn to....it was a bad time !! So....dad'd be my 2 cents here.....Pam

Title: Re: Are any episodics med-free?
Post by Jarvis on Feb 26^th, 2003, 7:55pm

Hi Grant. I am one that takes no meds as well. Other than the occasional ephedrine. I have not used meds for CH in over 8 years. . The 20 years prior to that I used everything under the sun that was known to the neuros, including oxygen. . . What I found was that the prescribed drugs really did nothing towards my headaches anyways and left me often in a haze and unable to properly fight let alone be productive. .. . Now that I am med free it still hurts like hell but I think I approach it differently and clearheaded I appreciate the purity of the pain more. :) I can fight a better battle. ... . I dont know but it seems much easier to deal with without meds. Has it changed the course of my CH? Nope.

Title: Re: Are any episodics med-free?
Post by Ree on Feb 26^th, 2003, 8:16pm

My husband Dave is Episodic and he only takes his Neurontin during his cycle and then weans off... He is in the process of weaning right now... other than that occasional Clonazepam for sleep... he has a rotten schedule... good luck Ree

Title: Re: Are any episodics med-free?
Post by Mark C on Feb 26^th, 2003, 8:55pm

Episodic for 29 years.....ineffective meds for the first 20 or so years. In my teens the cycles were short, 2-4 weeks but often, 2 or 3 times a year...moderate to severe pain.... my 20's was worse.....so far...several cycles a year, very severe, bad doctors, lots of drugs...legal and otherwise. 30's seem to be a little easier....I dont know why, lifestyle change? My last cycle scared me, not only was it the longest, it was one of the most severe. The whole month of October was lost in a blaze of pain...2 or 3 or 4 or 5 a day, back to back kip 8,9,10,11+, very bad. I found this place in the middle of that cycle ;D My cycles run around 12-18 months apart and last 4-8 weeks, with shadows for a couple of months before and after, damn, I am almost chronic if I define it that way. If I could find a preventive that worked I would take it. Not much luck with preventives so far....have had just about everything. I am going to try the magic combo of Verap and Lith this fall, when I should get hit. Then it will be a 55 gallon drum of Imitrex If I can get one. Triptans are the first, and so far the only thing that has ever had a positive effect in controlling my CH. Between cycles I am med free, till I find something that works! Today was a good day...PF!
FUCKENH!!
Mark

Title: Re: Are any episodics med-free?
Post by jmorgan52 on Feb 27^th, 2003, 7:25am

I'm over 30 years episodic. Nothing worked fro me until the Imigran injection.

My memory is a bit fuzzy at my age ;D but I swear the the cycles were actually shorter and the really bad ones were less often back in the days when I just had to tough it out. Looking back I don't know how I managed without Imigran, and I certainly would not contemplate not using it now!

I'm still pinning my hopes on the 3 monthly short detox diet as my major preventative. 10 months totally PF and 13 months since my last cycle started. By now I would normally have been having shadows and low/medium level headaches every day according the the HA diary I have kept for the past 8 years. Keeping my fingers crossed now!

John

Title: Re: Are any episodics med-free?
Post by brain_cramps on Feb 27^th, 2003, 9:02am

Hey

Thanks for your replies. Just as I thought: either a bunch of really small patterns or no pattern at all.

grant

Title: Re: Are any episodics med-free?
Post by Felic on Feb 27^th, 2003, 10:09pm

Hi,

I have been getting CHs for a few years and no medication has been really successful. Egodryl was good for a couple of years but it stopped working and I didn't want to stay on medication anyway.

For the last couple of years (episodes last 6-8 weeks) I haven't used medication but have just tried to stop the pain with my mind. I just concentrate on imagining the blood vessels in my neck being squeezed to restrict blood flow.

It is hard work and it helps if you are angry about getting another headache. The other night I couldn't do it (too tired) so it lasted longer and I was quite nauseous the next day. They have been pretty mild the last couple of years, though - it would need a lot of willpower to do this for heavy ones day after day. It can be exhausting trying to fight!

Felic
Australia

Title: Re: Are any episodics med-free?
Post by das on Feb 28^th, 2003, 3:37pm

I have been med free for over 14 months. I was chronic. Now I am episodic. I believe that meds or not the CHs come and go as they please. I'd rather not take meds if I don't have to, and that is a new philosophy for me. I used to take meds as soon as I would have any kind of pain.

I do use oxygen and shrooms.

BTW, trends don't seem to exist with CH.

Title: Re: Are any episodics med-free?
Post by JDH on Feb 28^th, 2003, 3:51pm

on 02/26/03 at 19:55:24, Jarvis wrote:

Now that I am med free it still hurts like hell but I think I approach it differently and clearheaded I appreciate the purity of the pain more. :) I can fight a better battle.

You're CRAZY dude!