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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> NEW TO SITE
        
(Message started by: demon_fighter on Nov 10^th, 2004, 12:30am)

Title: NEW TO SITE
Post by demon_fighter on Nov 10^th, 2004, 12:30am

Hello everyone!! what a great site!! i have been suffering from CH for about ten years. at first thaught it was sinisitus and told by many MD'S at the beginning thats what i had. I have been diagnosed whith CH'S from 3 nouroligists and have been on many meds( midrin,verapamil etc..) for the past ten years my attacks have lasted only a few weeks then would go away. i am on a 7 month stretch now where i get atleast 1 a day, usually the 3 a.m wake up!! now I am getting them throughout the day also. my neuroligist has me on 7.5 mg of clorazapate and 10mg of propranolol three times a day. I will tell you the one thing i can't live without is my Imitrex nasal spray20mg!!! it is to the point now where the fear of running out of my Imitrex is as bad as the fear of the demon coming!! my poor wife is living through this ordeal with me and is my lifeblood. she messages my face and neck when i am at the hight of the attack. my routine is rush to the shower, stand in the HOT water, brush my teeth( for some srange reason it helps) then have her message my face while I moan and rock back and forth like a baby. after it has gone i feel like i have had a siezure i am sooo tired. what a life we are enduring!!! glad to know i am not alone in this horror. the meds i am on now seem to help with the intensity, but still getting them throughout the day and night. wherever i go- my Imitrex goes!! sorry to ramble on!

Title: Re: NEW TO SITE
Post by nani on Nov 10^th, 2004, 12:37am

Welcome and I'm sorry you are here. :( Midrin will not do anything for a CH - at least as far as I know. I have chronic CH and I tried propanolol also, but verapamil is a much more effective prevent for me. I also take lithium and Neurontin as prevents. Be careful with the Imitrex, it has been known to cause rebound headaches in some people. I'm not familiar w/ clorazepate... Read all the info in this site and chack out the OUCH site as well. Hope you find some relief...

Title: Re: NEW TO SITE
Post by unsolved1 on Nov 10^th, 2004, 9:29am

Fear of running out of Imitrex .... .... ..... Wherever I go, my Imitrex goes ..... ... .... .... Sounds like a real clusterhead to me :o

Hang in there, you're not alone !!

8) Unsolved 8)

Title: Re: NEW TO SITE
Post by Ronny on Nov 10^th, 2004, 5:05pm

Hi,

Have you pushed the buttons on the left? especially the oxygen button. Besides imitrex, that's one of the most used abortives for CH.

Ronny.

Title: Re: NEW TO SITE
Post by demon_fighter on Nov 10^th, 2004, 7:11pm

I have oxygen at my bedside, it does help! My neurologist has me take clorazepate at bedtime so when i wake up with headache i am not as FRANTIC!! it is a anti-anxiety med. it does help me keep a little calmer during an episode. before taking the med i would break out in shingles because of the fright of the oncoming headache. now when i wake up with one i am able to mentally handle the episode without punching holes in the wall!!! my wife just loved that!! :o i have a freind that has been getting CH for 30 years, I just cant imagine dealing with this for 20 more years! :o atleast with the meds i am currently taking, it is an improvement. I am noticing that the longer this current cycle is lasting, the more i am becoming more sensitive to household cleaners(bleach,windex). it seems even certain perfumes are affecting me now. has this happened to any of you or is it my mind playing games ?

Title: Re: NEW TO SITE
Post by Ronny on Nov 10^th, 2004, 7:17pm

I have read about smells beeing a trigger, not to me though.

Title: Re: NEW TO SITE
Post by thebbz on Nov 10^th, 2004, 9:19pm

Hey there!!
The sniffer becomes super sensitive during an episode for me...bathe once a month need it or not LOL [smiley=laugh.gif] Stick around and welcome.
BB
Imitrex: Don't leave home without it.

Title: Re: NEW TO SITE
Post by angel-ache on Nov 13^th, 2004, 12:18am

Hello Mr.

I too sleep closer to my O2 than my boyfriend. He don't mind, he can't help me like the O2 can.

Have you tried Meletonin? I use it every night. I use only 3 mg now (1 tablet), but at the height of my cycle i use 9 mg (3 tablets). I really don't suffer too much during the middle of the night, I attribute the Mel to helping make night attacks a thing of the past.

I have been suffering for just over 13 years now, I am a 27 yr old female with a left-side-ache. Never switched sides, more pain free days between cycles (2 1/2 years), and the attacks are at there absolute unbearable worst (never been to the ER til this last cycle, 4xs).

Any questions, ask away, we are one big family here.

Angela

Title: Re: NEW TO SITE
Post by demon_fighter on Nov 13^th, 2004, 7:28am

Angela, never tried meletonin but will try it for sure. you started getting "THEM" at an early age! I have been to the E.R. many times!!! my neurologist just told me he was not going to give me any more imitrex because he thinks it is giving me rebound headaches. he told me to double up on my blood pressure med!! I have been taking Imitrex almost every day now for 6 months with this current cycle. I am terrified at the thaught of no Imitrex but i will follow his advise and see how it goes. I always thaught that mostly men get CH'S. I am right sided and it has never switched to the other side. I am praying that maybe I am getting rebound headaches from the Imitrex and this cycle ends!! will try the melatonon, need all the help I can get now that i will not be taking Imitrex. till next time......

Title: Re: NEW TO SITE
Post by karma on Nov 13^th, 2004, 8:31am

If its any consellation there has been allot of discussion on the affects that the triptans have on making the cycles worse. The consensus has been that yes the triptans probably make the cycles worse and longer but the relief is worth it. I agree that they make it worse but disagree on the trade off.
From my own experience using Triptans. I noticed a definate increase in the number of hits and worse shadows. Within two days of throwing the triptans in the trash my hits went back to normal and the severe shadows all but disappeared. I would rather deal with what I know than do anything that will make it worse. I know I can deal with the pain and it will go away.
My theropy of choice is Melatoninm, Magnesium suppliments daily and deep breathing, ice and cold water and relaxation during a hit. Aerobic exercise can sometimes keep the level of pain down or stop a hit in its tracks.
Next time its the clusterbusters for me.