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        New Message Board Archives >> Jan-Mar 2003 >> Chronics / Episodics
        
(Message started by: marty on Feb 27^th, 2003, 9:27am)

Title: Chronics / Episodics
Post by marty on Feb 27^th, 2003, 9:27am

I have a question(s)..

Chronics:

If you don't have any preventatives that works, how many times do you usually get hit during a 24 hours period?

Since Imitrex is dangerous to take more than twice in a 24 hour period, do some of you also use Maxalt (3 times a day), thereby being able to have 5 emergency abortives / 24 hour?

For how long a period have any of you used Imitrex Inj., Maxalt on a daily basis?

Episodics:

Have you noticed a change in character of the CH from cycle to cycle (better, worse or the same)?

and, if a change was noted, did the meds work the same, better or not at all during that next cycle?

Marty

Title: Re: Chronics / Episodics
Post by brain_cramps on Feb 27^th, 2003, 9:38am

on 02/27/03 at 09:27:48, marty wrote:

Episodics:

Have you noticed a change in character of the CH from cycle to cycle (better, worse or the same)?

Med-free - shorter, less severe cycles
(see "Are any episodics med-free?" thread)

grant

Title: Re: Chronics / Episodics
Post by Lenny on Feb 27^th, 2003, 10:06am

Marty,
Today is my 7 day with no prev. meds., the only reason i got off of them is they had to take me off of lithium ( :'(blood work ). The only prev. that have ever given me any releif from the beast is lithium and verapamil together,one without the other is worthless ( for myself ). This is the second time that they had to take me off of the lithium. Last time i stuck with the verap. and for 7 or 8 months,we tried every other medication out there ( prev. wise )with no help whatsoever ( i was getting hammered day and night ),so this time i decided to go without any meds. untill the doc give's me the green light to get back on lithium ( kid's please dont try this at home ;) ). As far as how many times do i get hit a day ( anywhere's from 1 - 7 per day ).As far as the only thing that work's for me abortive wise ( imitrex inj. ) love em. I have used up to 7- shots in a 24 hour period with no problem whatsoever ( full 6 mg. )in the past. The past 2-years i have started using only 2-mg. works just aswell for me :D

Title: Re: Chronics / Episodics
Post by Roxy on Feb 27^th, 2003, 10:13am

Marty,

on 02/27/03 at 09:27:48, marty wrote:

Chronics:

If you don't have any preventatives that works, how many times do you usually get hit during a 24 hours period?

For the fourteen months I was med free, my hits varied so far and wide, that it was always just a toss-up how many times. The couple of months or so (with meds), I had a two week period where the preventative (02) worked very well. But, for the last month, I'm averaging around 4 a day, and 4 at night.

Quote:

Since Imitrex is dangerous to take more than twice in a 24 hour period, do some of you also use Maxalt (3 times a day), thereby being able to have 5 emergency abortives / 24 hour?

I am lucky in the fact that I am able to split my injections up into 3 shots. That amount seems to work for me no matter how intense the hit. So, I can take care of 6 hits with 2 vials. I normally won't use all that in a day though. I know I have to hoard those shots...because, I WILL run out, even just using 2 a day. DO NOT mix Maxalt and Imitex....that's a big no-no. Maxalt does nothing for me except maybe cure a hangover.

Quote:

For how long a period have any of you used Imitrex Inj., Maxalt on a daily basis?

I have only had access to them both for a little over a month now....got the scripts on Jan. 20.

PFDAN,
Tracey ;)

Title: Re: Chronics / Episodics
Post by kim on Feb 27^th, 2003, 6:51pm

Hey Marty,

As an episodic sufferer, Yes, I've noticed difference in cycles (some better and some worse ) - and what works one time will not necessarily work the next................ Last cycle Neurontin seemed to lessen the length of the episode.....and maxalt mlt 10 dissolving pill + tons of coffee at onset did abort a number of attacks. I took the maxalt more than I was supposed to at times.........the doc took note of it and did not wig out so neither did I ??? ;D

Title: Re: Chronics / Episodics
Post by jonny on Feb 27^th, 2003, 7:02pm

14 years chronic with no meds?

1 to 5 aday......with a PF day every 5 days.

With meds.....1-2 every three days with sometimes three weeks PF

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

Title: Re: Chronics / Episodics
Post by Tim_w on Feb 28^th, 2003, 5:06pm

Marty
I was episodic for 20years been cronic for 3-1/2 years.
do not take imatrex and maxalt at the same time!
At the bad part of my cycle I get 10 to 12 a day with out meds/8 to 10 with meds
in the good part of cycle 2or3 a day with about 1 pfd a month.
I have to pick witch ones to abort.
The most maxalt I can get is 72 pills for 3 months/ with Doctors letter to Ins. company as to why I need so many , Still come up short!
PFDAN to ya Tim_w

Title: Re: Chronics / Episodics
Post by wally on Feb 28^th, 2003, 5:54pm

ive been episodic for 14 years, the first 12 i went med free mostly because they were fairly mild. only until recently has the beast and i been dancing alot. i find that maxalt does the trick for me if i take it right when i feel it coming on. if i wait too long then it does no good and the beast seems to stay longer 3-4 hours compared to 1 hour. i would never try and go through a cycle without my good ol maxalt
peace
wally

Title: Re: Chronics / Episodics
Post by CHILDINSIDE on Mar 1^st, 2003, 3:05pm

:'( I have been chronic fro a little over 2 years. i can never get into see my neuro. he put me medrol dose pack one time, and it seemed to shorten my cycle for that month. my cycle runs anywhere from 2 to 3 or 4 weeks. i usually don't get but about 4-7 days remission. imitrex dosen't work for me. lidocane nasal did nothing. the only thing i haven't tried was o2. my neurologist said it would cause me to have reboud ch's. i don't know, i have seen a lot of chatter on the board about the praises of o2. i can't see my neuro till april, and my attacks are getting more INTENSE AND LONGER each time. i have up to 30 attacks aday, and i have had to call family many times, because i was afraid to be alone. i didn't want them in the room with me, just to know they were there. i ashamed to say, that the pain is bad enough at times, that i don't trust myself. i think maybe i just need a new neurologist. this one seems puzzled about mine, and why so agressive attacks. with my family, and the board, they have been the best support.

thank you melissa

Title: Re: Chronics / Episodics
Post by jonny on Mar 1^st, 2003, 3:19pm

on 02/28/03 at 17:54:58, wally wrote:

the first 12 i went med free mostly because they were fairly mild.

Somebody please sign me up for the "Mild" clusters, I beg of you, please!!!!!

............................jonny :D

Title: Re: Chronics / Episodics
Post by kissmyglass on Mar 1^st, 2003, 3:48pm

Melissa,
Dash out to the nearest welding supply store & get a can of O2 & a regulator. A medical supply store for a non rebreather mask (if you nees a script for one of those, let me kinow & I can send you one). Your doc is worrying about rebounds?? with up to 30 attacks a day,(which I can't imagine.. 1-3 is about more than I can handle), when the hell would you have time for rebounds? screw him/her go get some O2.

My doc didn't want to give me O2 yet either but thaks to this board, I got some & it is a gift from the gods...
Good Luck!

Kev C

Title: Re: Chronics / Episodics
Post by Jarvis on Mar 2^nd, 2003, 2:13pm

Marty - Hi, I can qualify as chronic at times. Currently episodic. .. for 27 years I never found a prescribed abortive to work.I got 8-12 hits a day and night each lasting 1-2 hrs allways at k-10 and above. In the past few months I have had a small reprieve in the fact that I had a reduction in the frequency of attacks to 3-4 a day for the first time in my life. .... . This is not due to meds or the lack thereof. ... . Many years ago when imitrex first came out I used injections at least 8 times a day for a cycle with no results good or bad. ... . Currently using no meds. .............mj..........

Title: Re: Chronics / Episodics
Post by Jarvis on Mar 2^nd, 2003, 2:26pm

Melissa - I am no light weight when it comes to clusters but I have a question. I have never heard of anyone having up to 30 attacks a day. I did not know this was possible. Are you sure you have clusters and not something else? When I am at my worst 12 attacks will consume a full 24 hrs. Enlighten me please. I am not trying to discount your pain just further my knowledge of these damn things. Thanks ...mj..

Title: Re: Chronics / Episodics
Post by jonny on Mar 2^nd, 2003, 2:33pm

30 attacks aday?

Ya, if they last 1 minute.....aint CH as far as I know.

CHP, CPH....maybe one of those deals but it aint CH in my opinion.

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

Title: Re: Chronics / Episodics
Post by Roxy on Mar 2^nd, 2003, 2:38pm

on 03/02/03 at 14:26:27, Jarvis wrote:

I have never heard of anyone having up to 30 attacks a day. I did not know this was possible. Are you sure you have clusters and not something else? When I am at my worst 12 attacks will consume a full 24 hrs...

I agree Jarvis....when it's at it's worst, it's still about every 2 hrs. IMHO, it sounds like maybe something else is going on too.

Tracey

Title: Re: Chronics / Episodics
Post by suzy617 on Mar 2^nd, 2003, 3:09pm

I also agree with Jarvis. Just cant imagine 30 CH attacks in one day. In a previous post you (Melissa) stated that they last between 35 seconds to 3 hours each and come like waves. I am thinking there is also something else going on with that.