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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> I just wanted to introduce myself
        
(Message started by: clusternewbe on Oct 1^st, 2006, 8:34pm)

Title: I just wanted to introduce myself
Post by clusternewbe on Oct 1^st, 2006, 8:34pm

First of all I love it that ya'll are about empathy not sympathy. I feel fortunate to have found this site and plan to listen to everyones advice and to do my research about my clusterheadaches. I am really new to clusters. I am 20 years old and I live in Texas. I have had one episode of a cluster when they started last year. I started with the usual pain above the right eye. The pain in the temple and eventually stiffness in my neck. The pain was so intense that I drugged myself with codiene everynight so i could get some sleep. Eventually my husband rusehed me to the hospital with such severe pain that I was beating the side of my head with my fist. I've had CT's, Lumbar puncture, MRI, Blood work, they tried everything on me then came to the comclusion that I had cluster headaches. Well my episode only lasted for 2 weeks, which I know some of you would be very happy with, but it seemed like I never got a break from the pain. Has this happened to any of you before? I was given a rescue drug some axert and told to wait it out by my neurologist. I have not had a cluster like that in a year but I am experiencing shadows and I am absolutely terrified that with the season change my cycle will begin. If anyone has any wisdome that they would like to share please let me know. Being new....I can use all the help I can get. P.S. No I haven't tried oxygen...But I think I am going to ask my doctor about it. Thanks again guy's
Ash

Title: Re: I just wanted to introduce myself
Post by Sean_C on Oct 1^st, 2006, 8:58pm

on 10/01/06 at 20:34:17, clusternewbe wrote:

If anyone has any wisdome that they would like to share please let me know.

Live your life to the fullest, we never let the beast win Ash ;)

Hopefully he'll check out soon.

Cheers

Sean.......................................

Title: Re: I just wanted to introduce myself
Post by georgej on Oct 1^st, 2006, 9:13pm

One hit at a time, one cycle at a time.

Don't worry about it when you're not in cycle. If it happens, it happens. Above all, don't fear it--anxiety can increase your perception of pain, if not the pain itself.

Read, read, read--there are years of experience here, and some of the best advice you'll ever find. Not to mention some of the strongest and finest people it's ever been my privilege to meet.

Best wishes, and welcome.

George

Title: Re: I just wanted to introduce myself
Post by Charlotte on Oct 1^st, 2006, 10:33pm

Welcome aboard.

I thought I had posted but it's not here so I lost it somehow.

It's good to be prepared. Don't panic, but be prepared.

Charlotte

Title: Re: I just wanted to introduce myself
Post by Guiseppi on Oct 1^st, 2006, 10:56pm

Try to get the oxygen prescribed before your next cycle. Read the info on oxygen, used incorrectly it's next to worthless. You need a high flow, 15 litre per minute, regulator and a non re breather mask. Works like a charm for me. It must be started as soon as you get that first "oh sh%$ here it comes" feeling. Once the headache has really gotten ahold, the oxygen doesn't help me at all.

Then start reading, if you are truly an episodic sufferer you will need some type of preventative when you go back on cycle. Remember, you can't cure these damned things but you can manage them and keep the upper hand on them! Welcome to the nut house, I really hope we help you!

Guiseppi

Title: Re: I just wanted to introduce myself
Post by clusternewbe on Oct 1^st, 2006, 11:50pm

Thank you all so much for the advice this far. I promise to continue to educate my self on these beasts.

Title: Re: I just wanted to introduce myself
Post by bothofus on Oct 2^nd, 2006, 4:35am

Hello clusternewbe, or Ash,
Welcome!
You said, " I was given a rescue drug some axert and told to wait it out by my neurologist." Wow, that hurts...

You definitely need to look at some preventatives, Verapamil worked for me, doesn't for others here though. Please talk to your doc first.
Also, your neurologist didn't try you on imitrex to kill the beast once he has started to attack ya? I take the shots, expensive, but with insurance, manageable. I've heard of some that are allergic to imitrex, so be careful.

There is a lot of info to your left in the menu that will be helpful. Please keep us informed how things go for ya.
From a fellow Texan, Carl

Title: Re: I just wanted to introduce myself
Post by BB on Oct 2^nd, 2006, 5:48am

Hi Ash,

Sorry to hear you got cluster. Its a hard condition to bear I know.

However once you learn how to control it with preventive meds, ( be them traditional ones or natural remedies ), and abortive such as oxygen and Imitrex, you will be able to live life to the fullest and take each cycle/attack as they come with confidence.

Just spend some time reading EVERYTHING on the board, you will eventually know more about the condition than the average doctor out there!

Dont forget to read the Funnies as well, laughter is still the best medicine by far :)

Take care and painfree wishes to you.

Annette

Title: Re: I just wanted to introduce myself
Post by Richr8 on Oct 2^nd, 2006, 5:15pm

on 10/01/06 at 20:34:17, clusternewbe wrote:

P.S. No I haven't tried oxygen...But I think I am going to ask my doctor about it

Do it! In the fourteen years I have been suffering, Oxygen has brought me more relief than all other remedies combined. Until I found this site this year, my Neuro had me on 5 lpm through a regular face mask which barely worked at all. Since receiving advice on this site I have not been in high cycle, but it has knocked out about 80% of my shadows in under 10 minutes. Excellent stuff! Be sure to use it at 15 lpm and get a non-rebreather or clustermask as soon as you can. It wil make all the difference.

You see know that you are not alone with this, so don't be shy. Dig in, read, ask all the questions you want, or just come here when you need someone who truly understands what you are going through. Then, when you are feeling ell enough, jump in and help where you can.

Title: Re: I just wanted to introduce myself
Post by clusternewbe on Oct 3^rd, 2006, 9:02am

bothofus - It's funny you should mention that some people can be allergic to Imitrex. I am actually allergic to septra which is found in Imitex. My primary physican tried to give me Imitrex and then my pharmasist told me when i came to pick up the perscription that it was unsafe for me. I've heard so many good things about Imitrex, It's a shame I can't take it.

I am going to ask my nero about oxygen, to be honest i never even knew that was an option for me until I read about it here. I've really learned so much and I am truly grateful that I have found this home where I feel like people understand where i'm coming from. Thanks again...and as soon as I gain more knowledge I will help out where I can.
Ash

Title: Re: I just wanted to introduce myself
Post by BB on Oct 3^rd, 2006, 10:05am

on 10/03/06 at 09:02:38, clusternewbe wrote:

I've really learned so much and I am truly grateful that I have found this home where I feel like people understand where i'm coming from. Thanks again...and as soon as I gain more knowledge I will help out where I can.
Ash

Exactly a winner' s attitude ! Good on you!

Thank YOU :-*

Annette

Title: Re: I just wanted to introduce myself
Post by Phil L on Oct 3^rd, 2006, 7:10pm

Right on! Attitude is 99% of the struggle, the rest is all horse s*** and gunsmoke. Way to go!!

Phil L

Title: Re: I just wanted to introduce myself
Post by bothofus on Oct 3^rd, 2006, 7:15pm

Yes it is a shame you can't take it, but maybe the O2 will work.

Are you taking anything for a preventative?

Let us know how things go with your neuro.

Carl

Title: Re: I just wanted to introduce myself
Post by kayarr on Oct 4^th, 2006, 12:11am

Oxygen and Melatonin are all we use right now. After his heart attack my clusterhead decided to go alanaturale. If O2 works for you it is a wonderful abortive.

Title: Re: I just wanted to introduce myself
Post by Callico_Kid on Oct 6^th, 2006, 9:21pm

Glad you found us Ash.

Red Bull (or one of the other energy drinks with taurine} helps me if I can slam one down as soon as a shadow gets started. It has to be chugged as fast as you can drink it down and has to be early on to help, but I have had it knock a K8 down to about a 2-3 in about 5 minutes. Also, I use a lot of hot strong coffee during the times of day I know I'm going to be hit. These may help for the times you can't get to yuor O2 tank.

Keep your attitude up and don't let worry about the beast coming intrude on your life. Also, during your cycle you have to live very much in the moment. Don't borrow trouble before it comes.

Jerry