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Topic: HELP!!! (Read 517 times) |
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lisamanning
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I'm new to this website. I've been suffering from cluster headaches for 3 years now. I've been to many different doctors and specialists and now one can seem to find out what my trigger is. I was just wondering if anybody else has cluster headaches and don't know what their triggers are either? I've had cat scans, MRI's, dentists, chiropractors, nature paths and even the gynocologist look at me and none of them have been able to anything, except give me painkillers!! I'm so frustrated with these headaches. They only come once a year but last for about 1 month, EVERYDAY!!! And nobody seems to understand me, not even my own family. I'm only 23 years old and just need someone who understands me to talk to.
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BlueMeanie
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Re: HELP!!!
« Reply #1 on: Sep 27th, 2005, 9:24pm » |
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Welcome Lisa,
Sorry you have to be here, but we understand what you're going through. Not only does no one else understand CH's, even most docs don't, so don't feel too bad.
As far as triggers, some things set off CH's, but for the most part there's not alot you can do. CH's tend to come and go at bay regardless of what you do. I hope this years cycle is a short one month cycle as you say they usually are.
Hang in there, i'm sure it won't last much longer. There's always someone around to talk to here so feel free to hang out with the rest of us loonies. To the left of this page is all the info on medications and techniques. Keep reading and print material you find worthy to take to your doc.
PF vibes heading your way.
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kimmeesue
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Re: HELP!!!
« Reply #2 on: Sep 27th, 2005, 11:15pm » |
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Hi Lisa,
Understanding is something you will find in abundance here.
I had my first CH at age 25. Am 48 now and noone has figured it out. We all just learn not only to endure, but somehow to make the best of it. This site has been a Godsend for me. I hope it provides the comfort you need.
Pain free wishes,
Kim
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PollyPocket
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Re: HELP!!!
« Reply #3 on: Sep 28th, 2005, 8:31am » |
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Hi Lisa, sorry you have to be here, but glad you found us. Every one of us understands your frustrations- at the constancy of the pain, the lack of help from the medical community, and the ignorance (not meant in a derogatory way) of family, friends and coworkers.
Keep talking to your docs, keep telling them your symptoms, and keep trying different meds till you find one that works. It takes time, but you'll find something to give you some relief.
As for family, there is the supporters corner on here that can help you explain, and them to understand what you are dealing with. Also, it can be a great source of comfort for THEM as they deal with their own frustrations. Remember that they do feel as helpless as we do, and need support too.
Hang tough Lisa. We're here for you.
Jen
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
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marlinsfan
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Re: HELP!!!
« Reply #4 on: Sep 28th, 2005, 9:06am » |
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Hey Lisa,
When in cycle, most of us are triggered by sleep, because our hypothalamus is broken. Unfortunately you gotta sleep, so when you lay down at night or for a daytime nap, you will get hit. As someone here wrote once, Naps 'R not US.
If I get a daytime hit (all of us are different, so what I'm saying is just my experience), it will have been caused by something I ate or drank. My experience tells me that if I eat or drink alchohol, milk chocolate, anything citric, anything acid (like tomato), aged cheese (parmesan, for instance) or aspartame (diet coke or equal), I will get a headache 99/100 times. So when in cycle I stay away from all that, and I mostly won't get a daytime hit.
But, I understand how you feel. I've had daytime hits and not eaten any of the stuff I mentioned, so there are other triggers that I have not yet identified.
We're here for you if you want to vent. If you want to talk, PM me and I'll send you my cell phone number.
PF wishes.
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lisamanning
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Re: HELP!!!
« Reply #5 on: Sep 28th, 2005, 2:52pm » |
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Thanks guys. It really means a lot to me to know that someone cares. I appreciate all of what you said. And I've learned some things. Thanks again for your support and helping me through this. I feel better already. More upbeat that down.
LisA
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sandie99
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Re: HELP!!!
« Reply #6 on: Sep 29th, 2005, 1:50am » |
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Hi Lisa! 
Welcome to clusterfamily!
I'm so sorry that you have clusters, but I'm so glad that you found us.
I'm 25 and I had my first ch attack when I was 21. Alcohol, cold water, warm shower, chewing gum, salty snacks like popcorn and some scents are triggers for me. But not always, which makes having ch bit difficult.
There are some common triggers such as alcohol, but they are as individual as are the meds which work on us.
My family has a hard time understanding ch as well. It's new thing to them and they are helpless when they see me during an attack. I have printed out lots of informartion about ch for them and told them what I need from them when I get hit; sometimes I need company, sometimes I need to be left alone.
If you want to talk, send me instant message/email anytime. If you have skype, I'm sandie99.
Wishing you PF time,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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hm54
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Re: HELP!!!
« Reply #7 on: Oct 2nd, 2005, 12:01pm » |
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30 years without triggers other than the hands of time
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alienspacebabe
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Re: HELP!!!
« Reply #8 on: Oct 2nd, 2005, 4:37pm » |
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Welcome.
In addition to this website, there is an OUCH website for Canadians:
http://www.clusterheadaches.ca
and as for triggers, alcohol is the only really obvious one for me.
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Barry_T_Coles
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Re: HELP!!!
« Reply #9 on: Oct 10th, 2005, 11:36pm » |
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on Oct 2nd, 2005, 4:37pm, alienspacebabe wrote:
and as for triggers, alcohol is the only really obvious one for me.
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Welcome Lisa
Your in good company here & these people are the best drug I have found.
For me Beer is the trigger, wine & scotch is fine, we are all a bit different in how it attacks us.
PFDs
Kind Regards
Barry
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| « Last Edit: Oct 10th, 2005, 11:38pm by Barry_T_Coles » |
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Jasmyn
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Re: HELP!!!
« Reply #10 on: Oct 10th, 2005, 11:56pm » |
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Lisa, sorry that you had to join the clan of clusterheads but welcome to a new family of people who understand and support.
This is the best place to be and here you will gain a lot of important info that may help.
Hang in there girl and hope you are pain free soon.
Jas
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Jazz
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Jester
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Re: HELP!!!
« Reply #11 on: Oct 11th, 2005, 8:23am » |
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People talk about triggers, are you guys talking about triggers to an episode or an attack?
I believe that my trigger to an episode is after a particularly stressful event or period. It's like my brain says "well that was a fun period, now take this...".
As for an attack, sleep, salt and most important STRESS do it for me. I would not even think of smoking, drinking or anything else until the episode is over.
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| « Last Edit: Oct 11th, 2005, 8:28am by Jester » |
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kcopelin
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Re: HELP!!!
« Reply #12 on: Oct 11th, 2005, 12:36pm » |
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Hey Lisa,
Sorry you had to find us-glad you did though. I can get a lot of information from this website and OUCH. You'll end up knowing more than your doctor. As for triggers, once in cycle, getting relaxed triggers HA. I mean, sitting in my comfy chair watching TV for more than 4 minutes. I stay on my feet all day. Its bizarre, like a headache activating switch in my butt or something.
Kathy
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marlinsfan
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Re: HELP!!!
« Reply #13 on: Oct 11th, 2005, 4:40pm » |
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on Oct 11th, 2005, 8:23am, Jester wrote:People talk about triggers, are you guys talking about triggers to an episode or an attack?
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We are talking about triggers for headaches. I think most people here think change in weather triggers cycles/episodes. I don't. I've lived all over the globe (europe, south america, NE US, SE US, Rockies), and my cycles change even while living in the same area.
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zanychef
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Re: HELP!!!
« Reply #14 on: Oct 13th, 2005, 8:31am » |
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i have no idea what triggers me except for beer which i steer clear of (most of the time )and that after 22 years
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plenty of time to sleep now me headaches aint too bad
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