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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New to the site but not CH's (My story inside)
        
(Message started by: Evolution8 on Jan 25^th, 2006, 7:06pm)

Title: New to the site but not CH's (My story inside)
Post by Evolution8 on Jan 25^th, 2006, 7:06pm

Hi all my Name is Joey and i have been fighting these monsters since i was 15. I am now 23. I have CH's and so DID my father. we both share storys that are 99% alike, as are 99% of what i have read here so far. Here is what my cycle is like before, during, and after.

First i notice a small tweek in my left hand like a spasum
then my left nostril clogs up. Next my left eye starts to tear up, then within about 2 minutes swell to almost shut. During that time i become VERY sensitive to light and sound (as much as a candel and the sound of a soft wisper)

So i go and get into the shower. Hot water, as hot as i can get it, and as long as it will last. As im in the shower the real pain starts a constant pain on the left side of my head. scalding hot water and beating on my head is the only thing i can do at that point. Crying burning and wanting to die. There has been so may times that i have wished that i would just die. The pain is a level 9-10 for up to 3 hours but could last as short as 1 hour.
------------------------------------------------------------------------
This is the combonation that I take once it gets started.

3 Dristan cold and cough tabs broken in half
1 600m IBP tab cut in half
5-20 Angry shots of Afrin Nasal spray
5-10 hard hits of Vicks Nasal Inhaler
1 HOT shower
And the darkest most quiet room i can find.

Today i went to the Nuro for the second time after i got the "good" news that I have clusters.

First time i was kinda blowen off by the nuro, like he had too much to do to really evaluate me. so he gave me Imatrex made my heart race and didnt do anything for my headaches at all. this is how my father and i figured out the combo above.

Todays trip was not the same, i found a Nuro that was willing to work with me and find something that worked.
i was given Esgic Plus in combonation with migranal nasal spray. My question is this...... My father had CH's for 20 years or more and took Sansert. and has not had a CH since, he has had headaches but we ALL know that headaches and CH's are not the same.
sansert is no longer made, but is there something like it that i could take? And if i did take that would that not work for me better than other things? I mean since my dad and i are sharing storys of THE EXACT SAME CH's?

This has been going on for a long time for me and i really hope i can get some help here beacuse noboody but my dad understands. And i cant tell you how angry i get when someone says want some asprin? or oh, i got a headache too, or the worst......... I think its all in your head. GGGGGGGRrrrrrrrr. Am I the only one who wishes that everyone could REALLY feel one of these just once so they could know what Im going thru?

How long do your CH's last?
Do you know when there gonna happen?
What do you take?
How can i tell people who dont have it what its like?
Help me!

Thanks in advance and best wished to all,
Joey
;;D

Title: Re: New to the site but not CH's (My story inside)
Post by pattik on Jan 25^th, 2006, 7:39pm

Hi Joey. Welcome to the board. There is a lot of useful information here that can help you. As far as knowing when the headaches are going to happen...mine will show up at the same time every day, or every other day, depending on the cycle. I haven't noticed many pre-headache warning signs. Each one tends to last 2-3 hours, but I have had them last as long as 6 hours. Imitrex injections have been the most effective med for me, but due to the expense, I only use it sparingly. Check out the oxygen link on this site. Many people here, including myself, have had a great deal of success with it.
Here is a good link with more info regarding treatments:
http://www.brightok.net/~mnjday/chtherapy.pdf
I hope you can find some help and answers here.
Pat

Title: Re: New to the site but not CH's (My story inside)
Post by Kris_in_SJ on Jan 25^th, 2006, 8:23pm

Hi Joey,

I encourage you to follow the link given by Pat. It contains the latest treatment information regarding clusters.

If Tryptans like Imitrex don't help and make you feel bad, Oxygen just might be your answer. There's no use wishing for meds that aren't made any longer - there's a reason.

Your particular "cocktail" sounds a bit dangerous. I encourage you not to use it while following your doctor's advice. Chances are, you'll end up with rebound pain. I've NEVER know OTC meds to help with cluster attacks - sometimes the shadows - but never a high Kip.

Read and learn as much as you can. It's your best defense.

Hugs,

Kris

Title: Re: New to the site but not CH's (My story inside)
Post by hutton on Jan 26^th, 2006, 6:10pm

i to am new to this site but in the long few days i've been here i've learned ton thanks to everyone. i am currently in the third week of this cycle with my attacks coming 4-6 times daily unchecked they will last for 1 to 2 hours. i really urge to look in to oxygen it works for me and is safe. as far as tell people what it like good luck if you can put it in word let me know stay strong

brian