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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Newbie wierid cycle help
        
(Message started by: Jerry_M on Jul 21^st, 2007, 4:40pm)

Title: Newbie wierid cycle help
Post by Jerry_M on Jul 21^st, 2007, 4:40pm

Hi my name is Jerry I’m a 52 year male I’m new to the MB (actually I’m new to any MB
as I have never posted anywhere before) but not to CH. I had my first attacks in Sept. 02,
I had just come back from a week hiking trip over 11,000 ft. in Colorado (I live in
Florida) 3 days later these terrible intense HC’s started, I didn’t know what was wrong
thought it could have been an altitude thing, but after my 3 or 4th attack my girlfriend
said enough this isn’t normal and dragged me into the ER. They gave me CT scan found
nothing and agreed it was probable from the altitude. A few days later (still getting hit 2-3
times a day) a friend of friend etc. mentioned CH and I found your web-site (been lurking
and reading ever since) I saw that I had every sympton listed, and basically was able to
diagnose myself from your site (thank God) and found a local Neruo who sent me for a
MRA found nothing and agreed I had CH. He put me on a pregnesone taper and I believe
180 mg 0f verapamil, when the taper was done and the HC started returning he upped the
Verp. to 360mg and it seemed to do the job except for the occasional breakthrough. that
episode lasted aprox 2 months with another month tapering off the meds. In Nov. 04 I
was sent for a heart tilt test and they gave me nitro as part of the test which I believe sent
me into another CH episode this time did the preg. taper started verp. at 360mg wasn’t
working bumped up to 480mg. again seemed to work except for a few breakthrough’s a
week, this episode also lasted about 2 months. In the beginning of May this year I felt an
episode starting with shadowing ( I have been under a great deal of stress with my brother
at this minute having a bone marrow transplant for leukemia, after having a round of
chemo before which sent him into septic shock and 4 week coma in the ICU that we were
told he probaly would’nt wake up from.
I decided to try the alternate therapy which is spoken of frequently on this site and
clusterbusters. I did a 1/2 dose hopping it would stop the shadows which were getting
much stronger at this point, but instead I found that it had changed the routine of my CH
in that a CH would always start in my nose then my eye, then the stabbing ice pick in the
temple, after the dose my CH now starts at my temple goes to my eye and then my nose (I
think the nose pain is the worst this time around). When that didn’t’t work 5 days later I
tried a 1/4 dose this time the stabbing pain in my temple got longer and deeper if you
know what I mean. I finally decided to give up the alternate therapy and started my preg
taper while starting verp @ 480mg. again after the taper was getting hit alot upped the
verp to 540mg, after a week still getting hit alot went back to the Neruo who didn’t want
me on any higher dose of Verp. but added 750 mg Depakote er to the mix, I had also
added 9mg melatonin after reading the latest medical report listed on the site. I am now 2
1/2 months into this getting hit hard and often, I have discovered imitrx injections this
time ( I call it the off switch) but you can’t take nor can you afford to take a shot for every
attack. What is starting to drive me crazy is that twice now I felt I was out of this episode
having first three days completely pain free and feeling clear, only to get hit again and go
for another 2 weeks getting hit 2-3 times a day, to the second time with 4 pain free and
clear days, then just yesterday hit at 5pm & 11:30pm and today at 12 noon. I do use 02
but find that it just delays the attacks and doesn’t stop them. I’m worried I might be going
chronic (don’t know if I could live with that) and wondering if anybody has any
suggestions that might help. (Sorry for the length of this post but I wanted you to have the
details) Any help or information will be greatly appreciated.

Title: Re: Newbie wierid cycle help
Post by E-Double on Jul 21^st, 2007, 9:08pm

Unfortunatley a common story............

Welcome aboard.

First of all, do not worry about becoming chronic.
It is nothing to worry about as it is just another thing ;)
Chronic by definition is having CH cycle that lasts 1 yr or greater without a painfree break of 30 consecutive days.

As far as the Oxygen goes, how high does your flow go? You should be using at least 15lpm and a NONrebreather mask. If you can get you hands on a Clustermasx then you will be set
http://www.clustermasx.com/

With regards to imitrex........try the "tip" check out the link on the menu bar to the left<<<<<<

Anytime you make changes in meds there seems to be a change in CH activity.
Many report that when they use the alternative they first get really spanked prior to relief but when relief comes it is True!!!!

Stay strong and positive!

E

Title: Re: Newbie wierid cycle help
Post by TxBasslady on Jul 21^st, 2007, 11:00pm

It's important to hit the 02 ASAP when the pain starts.

If you wait...then it may not be as effective. Also, when the pain appears to be gone...turn down the regulator to 3.5 or 4...breathe normally at this low rate for a few more minutes. Sometimes this helps keep the CH from making a quick comeback.

As Eric said, your regulator should go to 15 lpm...and a clustermasx is the way to go.

Jean

Title: Re: Newbie wierid cycle help
Post by BMoneeTheMoneeMan on Jul 22^nd, 2007, 3:28pm

Agreed. Make sure you are using the O2 in the correct manner, and also maybe drink some caffeine. Some people drink a Red Bull, others drink coffee or coke. I like mine cold.

when using O2, I like to stay on it for a few minutes after the beast has gone. This helps to prevent it from returning quickly.

Also, have you tried Melatonin before bed? I take this with some benedryl and it seems to help.

PF wishes to you
B$

Title: Re: Newbie wierid cycle help
Post by horsegirl on Jul 22^nd, 2007, 9:55pm

at my peak the o2 dont help me . seems like it either pospones or delays, but check flow and mask , and dont give up on it, it works like a maricle for me in just a few moments, just not at my peek, like for ' two weeks "tops in the worst of my cycle.

Title: Re: Newbie wierid cycle help
Post by Jerry_M on Jul 25^th, 2007, 10:20am

Thanks Everyone for your replies sorry its taken a little while to get back to you had some trouble logging back on. I do use 02 @ 15lpm but I have just received my clustermask and I hope for better results, before when I would use it with a non-rebreather mask it seemed to only to delay the attack not abort it, but I will keep trying with my new mask. I have tried the imitrx tip but with cartridge so small I have had a very hard time just pushing enough in to leave enough for another dose, also the one time I think I only used 1/2 the ampule the HA was back in 3 hours while with the whole 6mg I have found relief for 8-12 hours. As this is the first cycle I have been using imitrex do you think that maybe why this cycle is diffrent from all the rest, longer, goes away then comes back in a few days? any answers apprecisted.
PF Days and Nights to All.

Title: Re: Newbie wierid cycle help
Post by Batch on Jul 25^th, 2007, 12:00pm

Jerry,

Welcome aboard the cluster head express. As you've discovered, the beast keeps his own schedule and there's no silver bullet that stops a CH hit or cycle every time. Many of us have found O2 is the best abortive of choice followed by the other abortive medications you've already tried. You may be able to get some more relief out of O2 as an abortive by taking a look at the following links:

http://www.ouch-us.org/medications/oxygen/o2info.shtml

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

Download the Supplemental User's Guide to O2 from the second link. It contains some helpful information compiled from successful O2 users in aborting CH attacks. O2 provides the most commonly effective abortive at the least cost to abort, and with virtually no side effects.

Take care and good luck.

Batch
Pete Batcheller
OUCH O2 Support Team

Title: Re: Newbie wierid cycle help
Post by zapparulz on Jul 28^th, 2007, 12:04pm

do the seeds not work? or are some reluctant to try them?

or is it the same thing...works for some not others?

wouldn't a natural cure be a first choice?

fill me in please......