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Very grateful new member (Read 1333 times)
TamiC
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Very grateful new member
Feb 20th, 2012 at 12:37pm
 
Hi everyone. My name is Tami. I'm 38 yrs old. I have a 17 yr old son & a 12 yr old son. I've been suffering from Clusters since my older son was born. After several extensive tests, I have been misdiagnosed as a Migrainer. It wasn't until last year, when I was searching online for any relief of my headaches, that I accidentally landed on a site describing "clusters". It was a miracle... for once, I read of people experiencing the same symptoms as I was (as apposed to 'some' of the same). Unfortunately, many doctors out there have no experience in trying to treat such severe headaches as these. It's devistating, to say the least! Cry My clusters are annual spells, lasting about 2 months at a time (starting between Nov & Feb) and occur every day/ every other day. The first starts at about a 4, then each one gets progressively worse until it reaches a 10. I have about 4-6 of those & then the degree of pain decreases at a gradual pace just as it had increased. My clusters (9 out of 10 times) wake me from a deep sleep between 1am & 4am. They start with a burning sensation in my right eye & temple. It then gets unbearable at a fast pace. I sit half asleep in bed, trying to deny what's happening until I just can't deny it anymore. I rub my neck, temple, head, etc.. then the pushing, squeezing, & groaning starts. I debate whether or not to take pain killers, until I eventually remind myself that nothing will ease it anyway (so why bother). On a rare occasion, Fioricet or medical grade pot have helped slightly, but... mostly just makes me impatient and anxious for it to kick in. Most of the time I get a freezing cold washcloth (or an ice pack which gives me brainfreeze before it has any effect on my cluster) and I hold it on the spots that hurt the worst, but it never seems to be able to penetrate deep enough. I end up squeezing my head so hard, I feel as if I could crush my own skull & that would feel better than the pain I'm enduring. I pace room to room, whimpering quietly to myself, wanting to smash my head off a wall... I just can't take it anymore. I feel so alone. Not one person in my life has any idea what I go through, which makes me feel like an "attention seeker". I'm so frustrated and tired of being scared of my next attack... it controls my life during those months.. my sleep, my family, my work, everything!! Today is Monday. My first attack was this past Friday & my second (more intense) was last night. I know that discussing all of this won't help my episodes, but it feels good just the same to have people to talk to, who truly understand. Thanx for reading Undecided
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« Last Edit: Feb 20th, 2012 at 12:49pm by TamiC »  
 
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Jeannie
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Re: Very grateful new member
Reply #1 - Feb 20th, 2012 at 4:57pm
 
Hi Tami,

Sorry to read that you are having such a rough time right now.  I think every one of us has been in your shoes.  The feeling of being alone is a terrible one but, you don't need to feel that way any longer.  There are lots of people here who understand and want to help. 

From what you have said, you are not being treated by a specialist.  Put that at the top of your list of things to do.  Getting a real diagnosis is important.  Until you can get into see a Dr. you might try using an energy drink like Red Bull at the first sign of an attack.  Drink it as fast as you can and you will often be able to shorten the duration and intensity of the pain.  I am still often amazed that it actually works as well as it does.

You might want to re-post  in the "Getting to know you" section.  More people will see it there and will offer you support.

Welcome to the boards.  Read all that you can.  You have a lot of learning to do in this fight with CH.  It does get better. 

PF wishes,

Jeannie
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wimsey1
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Re: Very grateful new member
Reply #2 - Feb 22nd, 2012 at 8:12am
 
Hi Tami. Gosh you are having an awful time, aren't you? As Jeannie said, we've all been there. Shoot, some of us (me!) are still there. I want to second that you need a good headache specialist who knows something about and can symptathize with a CH sufferer. Your description sounds very much like CHs, although other diseases can imitate them. That's why you need the help of a good doc. If you haven't taken the quiz at the left, do so, and bring it with you when you get an appointment. It can help you organize your thoughts around the symptoms and help the doc make a diagnosis. Be aware that many docs and neuros know next to nothing about CHs. Much of what is prescribed is either older knowledge or an attempt to help using meds for another disease, like migraines. CHs are not migraines, and while there is some crossover in meds, generally our treatments must be more aggressive. Read as much as you can on this site, take notes, keep a log and a journal. Ask any questions. Get a neuro appointment. We'll assist in any way we can. Good luck, and God bless. lance
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