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Topic: Clusterhead in the OC Needs Friends (Read 1288 times) |
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sleeponhold
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Clusterhead in the OC Needs Friends
« on: Jan 12th, 2008, 10:53pm » |
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Hi everyone! My name is Lisa and I'm new to the message boards. I've had CH since I was 15 (21 years). It went from years of Chronic to Episodic, thank goodness! I was also blessed to be in a 6-month, pre-market Imitrex drug study when I was 19.
But now I'm in a cycle and, well, you know how it goes. No matter how much experience I have with this, no matter how many things I've got to fight it, I'm still falling apart and I want to die. It's gotten to the near-daily crying and I really need someone I can talk to who understands. I don't know anyone else who has CH and if one more person with migraine tries to empathize with me I'm going to punch 'em in the face! If they only knew what pain really is!!
Help!!
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LeLimey
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Re: Clusterhead in the OC Needs Friends
« Reply #1 on: Jan 13th, 2008, 6:43am » |
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First of all I'm going to take exception to your "If only they knew what pain really is" line.
If the worst pain you've ever had in your life is breaking a fingernail then for you, that is the worst pain. Pain is relative. Even within CH what some people would call a 4-5 would be another person's 10. If someone is trying to show they care don't push them away. Sadly all too few people care and migraine is a horrible condition too. You don't make your pain better by negating someone else's.
Right now lets help you because here you really will find the understanding of what you're going through and help in dealing with it. I'm going to ask you some questions which will help with suggestions we can make to hel you find things that will really help you okay? Hang in there, we'll all help all we can!
I see you are an episodic - how long do your cycles usually last and how often do you get them?
Are they at approx the same time each year or do they vary?
How many attacks (hits) do you get per day?
Are they mostly day or night time?
How long do they last unmedicated?
What meds do you currently take (and dose) and what have you tried in the past? What has helped and what hasn't?
Have you ever tried Oxygen?
Have you tried Ice or heat?
Have you tried strong coffee or red bull type drinks at all?
Do you have medical insurance (it affects what we tell you re options.. no point in telling you stuff you can't get at the moment, that feels cruel)
I know it seems like a hell of a lot to ask you but it will help us with suggestions as how long your cycle lasts and how your attacks hit you all make a huge difference in options of how to fight them - and we have ton's of tricks up our sleeves to help you honest!
I'd also suggest you give the family services team at OUCH US an email, Linda Howell who is the chair of the team is also in CA and a more caring wonderful person you'd be hard pushed to meet. You can email her at
familyservices@ouch-us.org
I'll be looking for your reply and I know others will be along to help too
Hang in there
Helen
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sleeponhold
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Re: Clusterhead in the OC Needs Friends
« Reply #2 on: Jan 13th, 2008, 10:07am » |
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I've been treated with everything you've mentioned and way more for the last 21 years for K8s-k10s, always.
I will no longer take part in this message board as I am in too much pain to be lectured and abused.
Thanks for absolutely nothing but complete lack of understanding and compassion. This is all I ever get on message boards: people who don't believe I have CH (apparently a 21-year diagnosis means nothing) and/or think I have migraines.
I asked for someone to talk to, not someone who thinks they're better than everyone or thinks they can diagnose someone/tell someone what to do who's already way ahead of everything you suggest.
Please READ the posts before you respond.
What a terrible place this is.
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Kevin_M
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Re: Clusterhead in the OC Needs Friends
« Reply #3 on: Jan 13th, 2008, 10:22am » |
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Limey was trying to help. Your first post mentions nothing about what you have tried already, except in another post you said Depakote was helping, seemingly not well with clusters.
Your last word was Help. That is what she was trying to do.
ps. I don't know what OC means, either.
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| « Last Edit: Jan 13th, 2008, 10:38am by Kevin_M » |
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vietvet2tours
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Re: Clusterhead in the OC Needs Friends
« Reply #4 on: Jan 13th, 2008, 11:21am » |
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on Jan 13th, 2008, 10:07am, sleeponhold wrote:I've been treated with everything you've mentioned and way more for the last 21 years for K8s-k10s, always.
I will no longer take part in this message board as I am in too much pain to be lectured and abused.
Thanks for absolutely nothing but complete lack of understanding and compassion. This is all I ever get on message boards: people who don't believe I have CH (apparently a 21-year diagnosis means nothing) and/or think I have migraines.
I asked for someone to talk to, not someone who thinks they're better than everyone or thinks they can diagnose someone/tell someone what to do who's already way ahead of everything you suggest.
Please READ the posts before you respond.
What a terrible place this is. |
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Yep this is a terrible place. (thnx DJ) If you're way ahead of limey don't
let the door hit ya in the ass on yer way out.
Potter
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| « Last Edit: Jan 13th, 2008, 11:21am by vietvet2tours » |
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sleeponhold
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Re: Clusterhead in the OC Needs Friends
« Reply #5 on: Jan 13th, 2008, 11:30am » |
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Again, please read my posts. I was not asking about treatment help, just someone to talk to who understands. Attempts at "treating me" are not what I wanted or asked for. And in the other post, when I talked about Depakote, I was primarily talking about being patient with it starting to work and try not to give up too soon b/c, as I wrote, it can be slow to reach full efficacy (4-6 weeks), to wait and see. I've been on Depakote for six years and it works very well for me. I'm not sure how that came across as it does not help me. For me, being patient with Dep turned out to be worth it; if I had not waited the full 6 weeks, I would never have known how helpful it could be for me! But it can make you sick to your stomach sometimes, so I suggested taking it with milk or bread. Now I'm so used to it I can take it on an empty stomach if I have to.
On the other thing, can you understand how it's hurtful to have someone completely deny your diagnosis and then try to play doctor with you? Even if that message board member is a doctor, they have no right to do that.
It doesn't matter if you don't know what OC is (Orange County, CA). If someone who lived here read it they'd know and maybe respond! That's why I wrote it - it's local slang. That's all!
This is the first message board I've been on where I need to write disclaimers before each statement!! Bizarre!
Thanks for trying to help, Kevin!
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Bob_Johnson
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Re: Clusterhead in the OC Needs Friends
« Reply #6 on: Jan 13th, 2008, 11:55am » |
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Gang!! Too much stress showing up here!
Can we agree to start all over again?
We are being asked for some emotional support--not advice, not evaluation of past treatments......just a hand hold..
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Bob Johnson
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Kevin_M
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Re: Clusterhead in the OC Needs Friends
« Reply #7 on: Jan 13th, 2008, 1:08pm » |
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on Jan 13th, 2008, 11:30am, sleeponhold wrote:| I've been on Depakote for six years and it works very well for me. I'm not sure how that came across as it does not help me. |
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This below, I understood as a result of coping through hits, and your name, sleeponhold.
on Jan 12th, 2008, 10:53pm, sleeponhold wrote:| But now I'm in a cycle and, well, you know how it goes. No matter how much experience I have with this, no matter how many things I've got to fight it, I'm still falling apart and I want to die. It's gotten to the near-daily crying and I really need someone I can talk to who understands. |
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Perhaps another did too. But point being, by suggesting to a newby in another thread to wait the 4-6 weeks for it to become effective as his cluster preventative, this becomes confusing.
Feel free to start any conversation you want.
Quote:| It doesn't matter if you don't know what OC is (Orange County, CA). If someone who lived here read it they'd know and maybe respond! That's why I wrote it - it's local slang. That's all! |
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There is an OUCHCAL for clusters, also.
on Jan 13th, 2008, 6:43am, LeLimey wrote:| Have you ever tried Oxygen? |
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on Jan 13th, 2008, 10:07am, sleeponhold wrote:| ...already way ahead of everything you suggest. |
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on Jan 13th, 2008, 12:55am, sleeponhold wrote:| I hope that O2 works - I haven't had a dr. give it to me, yet. |
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In any event, oxygen is gold.
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| « Last Edit: Jan 13th, 2008, 2:11pm by Kevin_M » |
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Brew
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Re: Clusterhead in the OC Needs Friends
« Reply #8 on: Jan 13th, 2008, 2:13pm » |
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http://clusterheadaches.com/chat/
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Qam
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Re: Clusterhead in the OC Needs Friends
« Reply #9 on: Jan 14th, 2008, 6:53am » |
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Hi Lisa
We can all be your friends and genuinly trying to help.
Please give us a chance.
Qam
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chewy
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Re: Clusterhead in the OC Needs Friends
« Reply #10 on: Jan 14th, 2008, 7:06am » |
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imfareware
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Re: Clusterhead in the OC Needs Friends
« Reply #11 on: Jan 14th, 2008, 9:49am » |
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Hello, welcome! I've had these demons since 86. I wish I could say that I learned how to deal with them, but really I didnt. I have routines that I go through when they set in that I think help me aliviate the pain, but they really don't. For 60 - 90 minutes, 4 - 8 times per day, it really sucks.
Hang in there, we all know your pain. We have it. 
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nani
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Re: Clusterhead in the OC Needs Friends
« Reply #12 on: Jan 14th, 2008, 12:00pm » |
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on Jan 12th, 2008, 10:53pm, sleeponhold wrote: if one more person with migraine tries to empathize with me I'm going to punch 'em in the face! If they only knew what pain really is!!
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Lisa... this may be why you need friends. 
You may want to resist punching people who show you empathy.
I had a brain hemmorhage in '99... trust me...the WORST headache ever. If someone with clusters says they understand...should I punch them in the face?
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Brew
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Re: Clusterhead in the OC Needs Friends
« Reply #13 on: Jan 14th, 2008, 12:26pm » |
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on Jan 14th, 2008, 12:00pm, nani wrote:| ...should I punch them in the face? |
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If I was to be punched in the face, I'd know I deserved it if Nani was the one doing the punching. 
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fubar
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Re: Clusterhead in the OC Needs Friends
« Reply #14 on: Jan 14th, 2008, 2:23pm » |
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Hey Lisa,
You need to chill out. Lot's of people are here who have been in your shoes, so let them talk with you. Or don't. These things make us crazy, so don't expect every word here to be a magic elixir, but we *do* know what clusters are all about. Lashing out at us isn't going to serve any purpose.
I'm pretty close to OC (one hour north of SB). If you really need someone to talk with, PM me. I'll try not to mention my migraines.
-Fu
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Linda_Howell
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Re: Clusterhead in the OC Needs Friends
« Reply #15 on: Jan 24th, 2008, 11:56pm » |
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Hey Lisa...
Go here:
http://www.calouch.org/cgi-bin/yabb2/YaBB.pl
We are Califorians who know exactly what OC means. In fact I live in Redding, ca. Was raised in Burbank, Ca. and a whole lot of us understand.
You don't need to explain yourself...just relax and let us help if we can.
Linda
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hotprestwich
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Re: Clusterhead in the OC Needs Friends
« Reply #16 on: Jan 25th, 2008, 12:37pm » |
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i understand that this can make you crazy, so i think your just venting but this site is the best. people understand the pain, and can help, there are people who have both ch and migraines,
also you gotta remember your episodic, so it will end
thats what most of us hang on to there has to be an end and while your in cycle vent here and people will help ya,
we all feel for you and we do understand what your going through,
live for the pain free times,
stick around as theres no ther place to go, if you got clusters then your home, give us a chance,
pain free wishes too ya
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