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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Someone Please Press Play - The Story of a New Mem
        
(Message started by: Harmony on Dec 3^rd, 2007, 1:26pm)

Title: Someone Please Press Play - The Story of a New Mem
Post by Harmony on Dec 3^rd, 2007, 1:26pm

Hello all - I go by the name Harmony, because that's what I think of when I am pain free. I entitled this message someone please press play, because I feel that when I am in my Cluster period - Someone has put my entire life on pause.

I am an outgoing 29 years young, black female. My neurologists joked with me during our last visit, because I'm not the face of typical cluster sufferer. Like many of you, I was misdiagnosed for years. I can remember my first episode at 18, where the doctors told me I had a serious sinus infection. And gave me meds for that. Then I remember in college getting them again. I began journaling, so I could determine when this pain was hitting and for how long. When I came to Atlanta, my primary care physician recommended me to a neurologist who told me what I really had.

As a teacher it can definitely become a challenge. Right now I am approximately 16 days in my cluster cycle. I explained to my students and co-workers the condition, so they would understand how their smiling, bubbly teacher could go from laugh to crying pain within minutes. I am at the point now where I have to miss work, because the morning hours are not my friend.

I think the hardest part for me as a cluster sufferer is

(1) putting the things I enjoy on hold - gym, travelling, smiling, teaching, dancing, etc...
(2) continually asking myself - why me when I'm in my cycle
(3) seeing my mother who feels helpless when I enter another cycle

This year my cluster's came early . . . not for sure what that means, but we'll see. I am excited to meet other people who truly, truly know what I'm going through and to hear how you and your love ones make it through.

Hugs & Kisses,
Harmony

Title: Re: Someone Please Press Play - The Story of a New
Post by Guiseppi on Dec 3^rd, 2007, 2:11pm

Welcome to the board, so glad you found us!! Well now the work starts. Does he have you on a preventative medicine?? Something like lithium, verapamil or topomax to cut down the number of hits?

What do you use to stop the headache? Oxygen should be your first line abort. I keep a tank at work, in my car, all over my danged house! I ca abort in as little as 6 minutes with my little green e-tank. Other good abortives are imitrex injectors or nasal spray, pills take too long, and energy drinks with caffeine and taurine or just straigh, strong coffee.

Let us know what you use, what does or don't work, and maybe we can throw some suggestions your way! Hang in there, we really DO understand!!!!

Guiseppi

Title: Re: Someone Please Press Play - The Story of a New
Post by Sandy_C on Dec 3^rd, 2007, 2:17pm

Harmony,

I'm so sorry you are suffering, but I want to welcome you to this boat we are all rowing.

You haven't shared with us what medications you have tried, preventative or abortive. There are literally hundreds of us on these boards who have tried just about everything, who can offer suggestions.

I would like, if you would not mind, to address your 1-2-3 hardest parts of being a clusterhead.

1, Putting everything on hold. I don't know if your are chronic or episodic, but, be assured, these boards are represented by many of both. Neither our chronics nor or episodics but things on "hold". We live for our pain free time, whether it's minutes, days, months or years between hits and between cycles. Do not put your life on hold for this affliction. If you do this, then the "beast", as we fondly call CH, wins.
a. Start and keep a journal of dates of hits, time of hits,
length of hits.
b. If you haven't already, find a good neuro, who is
knowledgeable about CH. Find a good prevent - others on these boards can tell you much more about this than I can. Learn about abortives, which can stop a hit within minutes, like oxygen, Red Bull, Imitrex. All of these things can help you not to "put your life on hold".

2. Why Me?....We've all asked ourselves this question. The answer is, "who knows". It's not anything that you have done, said or thought. So get this right out of your mind. Medical research right now thinks we may have a "different" hypothalmus in our heads, and they don't yet quite know what to do about it. Instead of thinking "why me", start thinking "I refuse to let this beast win".

3. This is the hardest part of being a clusterhead. Seeing our loved ones in such distress, fear, and pain because of what we are going though. It makes us feel guilty, even though we know we're not. I've found that one way to help my best supporter, who is my husband, is to ask him to first, bring me ice water, ice packs, then leave me alone. It hurts me to see the concern and love on his face, yet he had to learn that, although I am in pain, he can not help me, and he needed to know that this will not kill me. Be very forthright, upfront with your Mom. Tell her you are and will be OK, tell her exactly what you need and want her to do to help you, because that's exactly what she wants to do, but be firm as to what you want her NOT to do.

I'm sorry you are here, Harmony, but I'm glad you've found this family, for that is what we are.

Sandy

Title: Re: Someone Please Press Play - The Story of a New
Post by DennisM1045 on Dec 3^rd, 2007, 2:24pm

Hi Harmony!

Welcome to the nut house. As you've undoubtedly already seen, there are loads of helpful folks around here with a wealth of knowledge. IMO greater than most of the doctors we see.

It is odd how much our personalities change when in cycle. I don't know how the chronics do it. I'm consantly appologizing to my family for what the beast says using my mouth ;;D Sometimes I feel like a puppet controlled by my trigeminal nerve.

Being a professional is tough. Especially when your hours aren't your own. But don't ever let the beast keep you from living. You need go on with life when the pain stops. Sure you feel like crap, either from exhaustion or meds or both, but dont' ever give in. Even when you don't feel it inside. Just doing normal things can make it more normal.

Tell us about the meds you've tried. Have you tried O2? It can abort a hit in 10 minutes if used properly. How about triptans? Preventative medications? There may be some tricks we can help with.

I have to combine it with energy drinks to really keep the beast at bay. Otherwise he sneaks back into my head pretty quickly.

The best thing you can do for your Mom is to reassure her that it isn't going to kill you. And when the hit is over, thank her for whatever help she was able to give and for not doing too much. For myself, I just ask that everyone go away and leave me alone. Occasionally I'll ask for some ice or water but that is usually only once I have the beast on the run.

-Dennis-

Title: Re: Someone Please Press Play - The Story of a New
Post by Bob_Johnson on Dec 3^rd, 2007, 2:30pm

On coping:

http://www.ouch-us.org/chgeneral/painvsuffering.htm

Title: Re: Someone Please Press Play - The Story of a New
Post by Ray on Dec 3^rd, 2007, 4:39pm

Welcome to the forums. Please feel free to read and learn and share. We have a wealth of common experience here and will offer sympathy and support!

Wishing you Pain Free Days and Nights (PFDN),

Ray

Title: Re: Someone Please Press Play - The Story of a New
Post by PollyPocket on Dec 3^rd, 2007, 6:28pm

Hi Harmony! Welcome :) You are not alone. We've all had the same thoughts and experiences and there is a lot of knowledge on how to deal with and cope with CH.

Don't ever think you have to put your life on hold, ok? Sandy addressed this best, and she's 100% right. Life is life, ch happens, and life continues. There will be many suggestions on what works, some for some, some for others. But all worth a shot until you find what works for you.

Read, read, read, and feel free to ask as many questions as you want. That's what we're here for.

Welcome to the nuthouse,
Jen

Title: Re: Someone Please Press Play - The Story of a New
Post by tessistired on Dec 3^rd, 2007, 6:57pm

Hi there Harmony and WELCOME!!

I wanted to join in and welcome you to your new family here. I am so glad you found this site, just as glad as I found it! Although I am still a newbie here I can certainly vouch for everyone here and how wonderful they are and how helpful and supportive they will be to you. So please stick around and dont be afraid to ask anything!

I have learned so much in just the short amount of time here and made wonderful friends...I wouldnt trade either for the world. Prior to me joining here I was alone...no one knowing what CH were or understanding my explanations...or just believing that they were exaggerations. All I had was my neuro Dr filling me up with preventative drugs that werent working...but it is all trial and error for everyone..and without these people I wouldnt be coping as well as I am right now.

I am a single mom with 2 young children and I'm 32. I have had Ch for almost 7 yrs...started episodic and now chronic. All in all, without me going on and babbling which I tend to do...lol...I am so glad you are here!

I am praying for you and your PFDAN

Tess

Title: Re: Someone Please Press Play - The Story of a New
Post by George_J on Dec 3^rd, 2007, 7:07pm

Just wanted to welcome you to the forum, Harmony. :)

Best thing about this place (besides the solid advice you can get here, and the friendships to be made) is the fact that you are no longer alone with this thing.

Welcome home.

Best wishes,

George

Title: Re: Someone Please Press Play - The Story of a New
Post by thomas on Dec 4^th, 2007, 10:31am

Welcome to the nut-house. ;;D

Title: Re: Someone Please Press Play - The Story of a New
Post by LeLimey on Dec 4^th, 2007, 2:38pm

Welcome to the family :)