Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Re: My God Im not alone
        
(Message started by: Langa on Mar 2nd, 2005, 10:13pm)
Title: Re: My God Im not alone
Post by Langa on Mar 2nd, 2005, 10:13pm
Welcome to the family Maffumatt...

Tell us more about yourself!  How long have you suffered with clusters, what meds are you on, etc.?  There's a lot of great info to read here.  Check out all the links to the left.

Langa
Title: Re: My God Im not alone
Post by Langa on Mar 2nd, 2005, 10:26pm
Matt, indeed your story is very familiar.  Sufferer for 26 years here.  I've heard it all too.  Mostly I was diagnosed as suffering from "chronic migraines".  When I mentioned to one Neuro that as a child a pediatrician mentioned cluster headaches, he laughed and said "only men get those".  I even had a doctor send me to a dentist to remove my wisdom teeth, but as it turned out I had none to remove.  Many here have similar stories.  

I finally found a great Neuro as well.  You were indeed blessed to find a Neuro that knows of clusters and even knows of this site!  

What meds are you on?  Read up on the Kudzu thread in the Medications board too...

Langa
Title: Re: My God Im not alone
Post by Langa on Mar 2nd, 2005, 10:37pm
A lot of us here use melatonin for the night-time hits and oxygen.  Oxygen has been a life saver to many of us, me included.  

Langa  ;)
Title: Re: My God Im not alone
Post by jokrs2 on Mar 3rd, 2005, 2:09am
Wecome Maffumatt.
Sorry about the diagnosis, but I'm glad that you now know what the deal is. I was in that boat for a couple of decades, misdiagnosed and I ended up on opioids daily for over 20 years for stuff that was "all in my head". I hate pain killers plain and simple, but the demon strikes hard. I have asked my wife to knock me out with a baseball bat too many times to mention. I have been reading alot of posts over the last few days and I spent alot of time in the jokes section today, and let me tell you I had as much fun as I have had in years. I was in tears with laughter, and it helped me through some shadows big time ;;D. There are so many wonderful people here and all the info on the left will give you alot of info as you go through it. I wish you many PFD's and as always will vibe a complete recovery is possible for you, and I know mine is coming. Better days and nights ahead. Joe
Title: Re: My God Im not alone
Post by jokrs2 on Mar 3rd, 2005, 2:18am
Oh yeah, Matt. I've been on Imitrex for quite a while and some other triptans. They have worked the best for me, but many people have a wide variety of treatments that can be suggested that work better for them. I have heard good things about Kudzu so I'm going off my triptans for a while to give kudzu a try. I am a chronic and have battles on a very regular basis. When I heard that some people go into remission and don't have spells for years...well...let me just say damn. Just 1 of these demons is TOO damn many. Hang in there, Joe
Title: Re: My God Im not alone
Post by NadmanET on Mar 3rd, 2005, 4:46am
Matt, First off, Awesome name!! Matt Matlock actor/hustler.  :D I just found this site today, and wow, how great!! Like you I am still in awe that other people out there are going through this with us. It sucks that they have to but it is comforting. I have had pretty good luck for a while with verapamil only i have the 240mg dose. I just made an appointment w/ my doctor today for the 15th and I am going to try to get some imitrex injectors and possibly an oxygen tank, as I am currently in the middle of a cycle. I've been seeing doctors for quite sometime about these. You are lucky you found a doctor that has a lot on the ball so quickly. He is right though, it is, from what I've seen, trial and error to find the best treatment. I can't even remember everything I've tried but among them are celebrex, maxalt, zoloft, and percocet.  I hope you start having PFDs soon!!

All the best,
Dan
Title: Re: My God Im not alone
Post by Langa on Mar 3rd, 2005, 8:59am

on 03/02/05 at 23:07:58, maffumatt wrote:
Ive been reeding these posts for a couple of hours now and I have one Question. Do the headaches end with treatment or are the here for good, just a different degrees of severity. Its neat to see some of the different rituals that people do, mine was to sit in the bathtub with the hottest water that i could stand. I dont know that it helped that much but at least I was doing something, and no one could see me in there. I could only face it alone. My wife tries but she realy dont understand. When she gets home from work I am going to show her the supporters website. That way she will know shes not alone either.



So far from what we know, cluster headaches never go away, though there are people that have been in remission over 10-12 years (that would be nice, wouldn’t it?).  Some of us have gone chronic after years episodic.  Some of us get shorter cycles with less intense pain as we age, etc.  Frankly, for me, there seems to be no rhyme or reason with these things.  However, many of us have success at keeping the beast away for a long time or breaking cycles or preventing cycles with meds and alternative treatments such as Kudzu and clusterbusters.

Rituals…cold works for some, heat for others…heat for me.  I would definitely tell your wife about the supporter’s board…we have some amazing supporters here!

Langa
Title: Re: My God Im not alone
Post by TonyG1 on Mar 3rd, 2005, 8:31pm

on 03/02/05 at 23:07:58, maffumatt wrote:
Ive been reeding these posts for a couple of hours now and I have one Question. Do the headaches end with treatment or are the here for good, just a different degrees of severity. Its neat to see some of the different rituals that people do, mine was to sit in the bathtub with the hottest water that i could stand.


Hey Matt - Welcome to the board.  Sorry you have to be here for the CH reason but since you have to be here...  you're in good company!  There is a lot of great info here.  I too am episodic and have gone through cycles for about 18 years (since I was 21).

Rituals --- I do the hot bathtub deal as well except I usually submerge my head all the way up to my face... (give me a straw to breathe) ... :)  That is after imitrex and I'm waiting for the beast to go back to sleep.  If that doesn't fully work, then it is outside to the cold air (providing it is winter), wet hair and all...

Again, so sorry you're here with this diagnosis but it sounds like you found the right doc
Title: Re: My God Im not alone
Post by Kris_in_SJ on Mar 3rd, 2005, 8:46pm
Hi Matt,

Wecome to the board.  You'll find all the best in experience, support and advice here.

It sounds like you have a pretty savvy doc, though chances are you'll have to change your meds around a little.  It takes some time to find the cocktail that's right for you.  My last two cycles, this has been mine:

    Verapamil 480mg/day (you're on a minimal dose)
    Prednisone Taper - by the time you're off, the Verap is     starting its work
    Imitrex Injections to abort - forget the pills, they take too long to work!  NS works for some, but the injects are the best.  If not Imitrex, then Oxygen prescribed EXACTLY as you read it on the link to the left.
    Melatonin 9mg/night 30 minutes before bedtime.

Of course, now we have the Kudzu treatment, which every episodic clusterhead is monitoring.  My cocktail next cycle might very well be completely different.

PF Wishes to you!

Kris
Title: Re: My God Im not alone
Post by RichardN on Mar 3rd, 2005, 9:46pm
Welcome Matt

  Oxygen is my abortive (can't take triptans) and works wonderfully.

  Heat is my thing too, and besides the hot water submersion,I keep a couple of cotton socks filled wiith rice by the microwave . . .  . stays hot for quite a while and molds to your face/neck better than the water bottles I used to use.

  Verapamil is my abortive . . . . I had my first painfree day at 240 mg, after having 6-8 CHs per day (when I found this site 2/02), got to 360 mg . . .now 120 mg maintenance dose.

  Melatonin does seem to help reduce frequency/intensity of night hits.

  Identify triggers if you can . . .alchohol was major one for me . . .quit 2/02 . . . drink non-alchoholic beer when I really want one.

  You hit the mother-lode when it comes to CH info.  Great bunch of folks here who truly know your pain.

   Be safe,   PFDANs

       Richard
Title: Re: My God Im not alone
Post by Langa on Mar 4th, 2005, 8:02am

on 03/04/05 at 05:01:54, maffumatt wrote:
i was wrong he came to play

[smiley=hug.gif]
Title: Re: My God Im not alone
Post by JJA on Mar 4th, 2005, 11:02am
Take this with you to the doctor.
http://www.brightok.net/~mnjday/chtherapy.pdf

It has good information about verapamil as well as other meds. It should help you (both) decide what dose of verapamil should be tried.

Quote:
Also he said he would give me a perscription for O2 if the Imitrex wasn't effective. Should I ask for both?

I'd ask for both. Can't hurt to ask.

Quote:
What about when this cycle is over ? Do I continue the meds or do I wait until the next cycle to start to begin to takeing them again?

Usually people stop their meds in between cycles to avoid them becoming less effective.

Jesse


Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.