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Topic: New to this site, but not new to the headgame! (Read 288 times) |
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millie the episodic
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New to this site, but not new to the headgame!
« on: Jul 5th, 2005, 11:59pm » |
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 I'm Millie and I have been trying to deal with this THING for a long time. I have been to many, many drs only to be treated like a is or a was. I have been told that this was in my head (and I would have to agree), but it is affecting my body and my mind, not to mention my spirit man. They freely give me their poisons but rarely give me anything to help me or my head. It is hard being a woman in a man's world, because they wouldn't consider CH because I'm a girl. I have felt so alone trying to fight this demon that I have felt like maybe it is in my head and maybe I may need counciling or something. I have even thought about hurting myself or worse, and that really scared me. I am glad that I found this site because I thought that maybe if I had someone to talk to that understood what I have being going through maybe it would help me to be able to deal with this monster, or atleast understand it better. I'm so tired of feeling alone, and I'm so tired of my head killing me!
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BobG
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Re: New to this site, but not new to the headgame!
« Reply #1 on: Jul 6th, 2005, 12:18am » |
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Welcome to the board millie. Sorry to hear you're hurting.
Please tell us more about your attacks. What meds have you tried or are using at this time.
There is more experience and information here than you'll find anywhere in the world.
Please let us know about you.
modified: oops, had to delete part. my mistake.
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| « Last Edit: Jul 6th, 2005, 12:33am by BobG » |
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vig
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Re: New to this site, but not new to the headgame!
« Reply #2 on: Jul 6th, 2005, 12:29am » |
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This isn't a man's world here...
You're not alone either.
read up, You'll get stronger when you know and learn as much as you can.
CHin up....
CHip in...
welcome
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millie the episodic
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Re: New to this site, but not new to the headgame!
« Reply #3 on: Jul 6th, 2005, 12:38am » |
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I am currently using oxygen 7-8 liters, zomig, and I have an imitrex injector for when the zomig doesn't work and lots of advil and trips to the dr when I can't take it anymore. I have been in this cycle for over 2 months with the last 2 wks being really really ruff on me. 
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Jimi
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Re: New to this site, but not new to the headgame!
« Reply #4 on: Jul 6th, 2005, 12:47am » |
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Sounds pretty standard. You might consider upping the 02 flow to a 10, if your regulator goes that high. Sorry you have to join us. But welcome.
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Kirk
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Re: New to this site, but not new to the headgame!
« Reply #5 on: Jul 6th, 2005, 1:18am » |
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I use O2 at 15/lpm with a single vent non rebreather mask. Your milage may vary but I would'nt be surprised if you end up having to go that high.
Sorry to see you here. Welcome to the maelstrom. All the people are nuts. Except me of course , and maybe PD.
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AussieBrian
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Re: New to this site, but not new to the headgame!
« Reply #6 on: Jul 6th, 2005, 1:37am » |
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G'day Millie,
And this is neither a man's world nor a woman's world.
It's a CHers world and you're welcome.
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sandie99
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Re: New to this site, but not new to the headgame!
« Reply #7 on: Jul 6th, 2005, 2:02am » |
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Hi Millie! 
Warm welcome to clusterfamily! 
I'm so sorry that you have ch... 
Don't worry, you're not the only woman in here! You've got lots of clustersisters here at ch.com.
And lots of lovely clusterbrothers as well.
I know what you've been through, though. My second neuro (a man) was sure that I couldn't have ch because I'm a woman. Luckily I trusted my first one (a man as well) more because he was specialist with ch.
And I have been through those dark, dark days during I wanted to hurt myself, too. They don't call ch suicide headaches for nothing! But being here helped me and I know it'll help you too.
But Millie, now you don't have to be scared about not finding people who get it. They're right here, all the time. When you have a good day, let us know. When you have a bad day, let us know. I'm serious, we're here for you. 
If you have something you want to talk with just one of us, you can email me or send me an instant message any time.
Warm welcome & lots of PF time
Sanna/sandie99
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| « Last Edit: Jul 6th, 2005, 2:03am by sandie99 » |
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Jeepgun
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Re: New to this site, but not new to the headgame!
« Reply #8 on: Jul 6th, 2005, 10:10am » |
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Welcome, Millie. Sorry that you have reason to be here... You're not alone. Keep up the good fight.
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ClusterChuck
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Re: New to this site, but not new to the headgame!
« Reply #9 on: Jul 6th, 2005, 10:27am » |
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Sorry to have to welcome you here, but glad you found us.
One thing you said, scares the begeebers out of me. You said that you have an imitrex injector to use when the zomig does not work. NEVER EVER mix triptans! It can be fatal! You may have gotten away with it other times, but you never know when it will give you an adverse reaction. Please PLEASE PLEASE don't do that again!
As far as your oxygen usage, as others have said, many of us have to go to 15 lpm. Also, are you useing a non-rebreathing mask? Check on the OXYGEN INFO button on the left of your screen. It has the correct way to use it. While inhaling, I block the holes on each side of the mask with my thumb and index finger. That way you are getting 100% (or fairly close to it) pure oxygen. It sure makes a difference to me.
Any how, keep us informed, and welcome to the nut house. All the others here are nucking futs (including Kirk and PD), except me. I am the only normal person here.
Chuck
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Woobie
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Re: New to this site, but not new to the headgame!
« Reply #10 on: Jul 6th, 2005, 4:14pm » |
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on Jul 6th, 2005, 10:27am, ClusterChuck wrote: All the others here are nucking futs (including Kirk and PD), except me. I am the only normal person here.
Chuck |
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And if you believe THAT............ I have pictures........
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millie the episodic
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Re: New to this site, but not new to the headgame!
« Reply #11 on: Jul 6th, 2005, 4:49pm » |
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 Now I am a little worried (again). My dr prescribed both zomig & imitrex inj. to be used zomig first and only twice in 24hr. then use injector if needed but I will take your advice and use either or. I really wonder if they are worth the trouble anyways, because last night when MISTER came out I tried to time the span of using the zomig & O2 and the relief, and I think that I usually go through most (35-45min) of the headache. My dr also prescribed the stadol inhaler, which I a scared of because the way it makes me feel, but sometimes I have to use it or go to the dr, because they move in and stay and it seems to affect my whole body, no energy. My o2 mask does have 2 holes in it, and I will try covering the holes when I have to use her again. Yesterday I had 2 headaches before day and 3 after 7am. Talk about ruining a day MISTER MAN does and can and will ruin your day. But I must admit that these THINGS do keep me praying
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rumplestiltskin
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Yer words remind me of the feelings I got when I found this site.
The only pain which heightens a cluster is the dispair of feeling alone....with clusters...like noone else could possibly have this kind of pain or imagine what I'm goin through.
We do.
welcome home.
den
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Linda_Howell
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Re: New to this site, but not new to the headgame!
« Reply #13 on: Jul 6th, 2005, 5:20pm » |
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Millie,
There are other preventatives, as well as alternative treatments you can try also. I know having the patience to look around this site can be daunting when your patience is gone....but do it when you can. Everyone needs to find their own bullet to stop this beast and you will find yours. UP that regulator to 15 girl!!!!!!! 
Quote:All the people are nuts. Except me of course , and maybe PD.
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Thanks a lot Kirk
Linda
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Jonny
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Re: headlions
« Reply #14 on: Jul 6th, 2005, 5:25pm » |
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on Jul 6th, 2005, 5:09pm, rumplestiltskin wrote:Yer words remind me of the feelings I got when I found this site.
The only pain which heightens a cluster is the dispair of feeling alone....with clusters...like noone else could possibly have this kind of pain or imagine what I'm goin through.
We do.
welcome home. |
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Well said Den, well said!!
(BTW, only reason im being nice to you is cause I know full well what you described) 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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unsolved1
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Re: New to this site, but not new to the headgame!
« Reply #15 on: Jul 6th, 2005, 5:47pm » |
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Have you already tried the Imitrex injections and did it help ? Many here must use it.
Listen to the others and up that O2 to 10 - 15 lpm
and oh yea ... welcome to the board. Sorry you had to come. Grab an oar and help us row ! 
Unsolved
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millie the episodic
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Re: New to this site, but not new to the headgame!
« Reply #16 on: Jul 6th, 2005, 6:00pm » |
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I realize that I am going to have to try and find the right meds for this devil, but I really hate starting all over again and I thought that I had tryed everything anyway. Sometimes I think that they are trying to kill me with all this sh-- but I do it anyway because I am so tired of this pain that even I have trouble describing. One thing for sure is that I can not take Topamax because it made my whole body sick. I know this sound messed up but I would ALMOST rather have the headache that to feel like I did when I was on the topamax. I know that everything is just an experiment to try and find the right mix, but when everything that you read tells you that they don't know mech about CH and or what causes them or how long they will last. And yet I still have my head held high(probably because I only have the usual constant headache that I have when I am in the cycle. Thank you all for making me feel at home. Maybe we CAN help each other!
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millie the episodic
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Re: New to this site, but not new to the headgame!
« Reply #17 on: Jul 6th, 2005, 6:04pm » |
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I have an imitrex injector, but when I use it I have to be at home or some where that I don't have to do much becuase it knocks me out. I'm wondering should I ask my dr for the imitrex inhaler instead of the zomig? So as not to mix tripans
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Linda_Howell
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Re: New to this site, but not new to the headgame!
« Reply #18 on: Jul 6th, 2005, 6:16pm » |
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by Imitrex inhaler I assume you mean the nasel spray.
That is what I use, only because it's cheaper and I can get more. You still must not use more than is safe for you.
Quote:| Topamax because it made my whole body sick. |
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Yeah. we sometimes refer to it as DOPE-O-MAX.
see? you've already started to scale the drugs down to what YOU need. Look at it in a positive way as apposed to starting over.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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millie the episodic
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Re: New to this site, but not new to the headgame!
« Reply #19 on: Jul 6th, 2005, 6:37pm » |
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You are correct imitrex nasal spray. Have you tryed verapimil, and if so did it help. I have tryed it but I really thought that it made my headache more frequent and it made me so tired. I tell the doctors that my job can be dangerous and that sme of these meds make it hard for me to work but what to do?
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Linda_Howell
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Re: New to this site, but not new to the headgame!
« Reply #20 on: Jul 6th, 2005, 6:47pm » |
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Quote:
Hon....I've tried everything since 1987 except Prednisone. THAT, I won't do. And No. the Verapamil did not work for me. But please note that it DOES work for many and you may be among those it works for.
Please keep that in mind because that is what we meant by finding YOUR magic bullet. And I am chronic and you arent. Big difference.
I meant to add before this that do not let anyone but Bob P tell you that Clusterheadaches only happen to men.
Linda
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Charlie
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Re: New to this site, but not new to the headgame!
« Reply #21 on: Jul 6th, 2005, 9:25pm » |
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Welcome to the madhouse Millie and I'm sorry you have to deal with this horror. I'm also sorry you've had trouble convincing medical twerps that women get clusters. My infant neurologist has at least two women sufferers and I met an old friend the other day who has a niece, I believe,with clusters. Makes one mad.
Here is a a technique that I should have been posting for some time. It sounds strange but it worked very well for me and others:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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TonyG1
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Re: New to this site, but not new to the headgame!
« Reply #22 on: Jul 6th, 2005, 9:39pm » |
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Hi Millie - Welcome to the site. You're not alone in this fight ... there is a lot of good info here and many ppl who have a lot of knowledge !! Chin up and as someone else aptly put it ... welcome home!
Best Regards and pain free wishes !!
Tony
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purpleydog
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Re: New to this site, but not new to the headgame!
« Reply #23 on: Jul 6th, 2005, 11:19pm » |
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Welcome Millie, sorry you found your way here, but glad you did. My doc had me on two triptans for awhile, it was the only thing that worked. I did this for months, but it's not for everyone, make sure you listen to your doc.
Sounds like you could up the O2 flow a bit and get a non-rebreather mask. There are lots of meds available, and everybody has different results with them, so keep trying.
There is a ton of info over to the left, read, read, and read some more. And ask questions, that's what we're here for.
And this IS the nuthouse, where everyone is nuts, INCLUDING Chuck. Except me and Kirk. We're the only sane ones here.
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millie the episodic
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Re: New to this site, but not new to the headgame!
« Reply #24 on: Jul 6th, 2005, 11:46pm » |
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Am I the only one who has an almost constant headache. Its almost like my head is sore. But the daily headache has become a nusiance but at the same time a hell of a lot better that the devils jig in my right eye. It seems that I have a constant frown anymore.
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