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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Just to say hi
        
(Message started by: soulroach on Jul 27^th, 2007, 7:53am)

Title: Just to say hi
Post by soulroach on Jul 27^th, 2007, 7:53am

Didn't know where to say my peace, so thought I would start here. I'm 38 yrs old and been dealing with this nightmare for about 11 yrs now. I guess I'm lucky, at least so far, I'm still episodic and have gone 2 yrs PF, until 2 months ago when the pain returned. I just recently spent 4 days in the hospital but it only stops the pain while your in. I'm currently on a binge of shadows and illusions but it's better than the real thing. I just found this site and was amazed at how many fellow sufferers there are. It's good to know I'm not alone. I feel so close to everyone here even though I don't know anyone. Anyway, wanted to post just to say hi, and thank each and every person, for being here.

Title: Re: Just to say hi
Post by sandie99 on Jul 27^th, 2007, 9:55am

Hi there!

Warm welcome! :)

I'm so sorry that you suffer from ch, but I'm glad that you found your way to this site. The best place for info & support. :)

Lots of PF days,
Sanna

Title: Re: Just to say hi
Post by DennisM1045 on Jul 27^th, 2007, 10:23am

Hello and welcome to the Family. Please tell us more about your experiences. What works for you? What have you tried? etc. That is how we all learn - from each other.

Knowing I was not alone has changed everything for me. It turned my way of thinking upside down. The people on this site have tought me the importance of living between the hits.

I hope you find the relief and comfort here that I have.

-Dennis-

Title: Re: Just to say hi
Post by Guiseppi on Jul 27^th, 2007, 10:45am

What Dennis said!!!! What really makes this board work is our combined shared experiences. What meds you've tried, the degree to which they did or didn't work, any unorthodox things you've tried that did or didn't help...(who'd have thunk energy drinks would work to the degree they do!!!).

Another warm welcome to the board, it's awesome to have a place to visit where you don't have to try and explain anything about the pain, we get it!

Guiseppi

Title: Re: Just to say hi
Post by GrandPotentate on Jul 27^th, 2007, 10:27pm

I'm glad you found us, sorry you had to look. But you will find a lot of folks here who have helped me through a lot. You would have a hard time describing what you are going through to most people, but you'll find we have allbeen there and a extremely understanding.

Read, read, read. We haven't found a cure, but we sure have found ways to live this this. Let us know what's up with you.

Title: Re: Just to say hi
Post by thebbz on Jul 27^th, 2007, 11:11pm

Welcome and what they all said.
http://www.plainboard.com/ch/chtherapy.pdf
all the best
thebb

Title: Re: Just to say hi
Post by soulroach on Jul 28^th, 2007, 8:14am

Wow, thank you all for the warm welcomes. It really does feel good to have someone who actually understands the pain and suffering of ch. I've been on 900 mg lithium and 120 mg cardizem for years. I used to think it worked, now I just think the beast does whatever, whenever it wants. The doc also has me on 25 mg amitriptyline but I don't think it helps and it makes my skin break out(not my face but my back and shoulders). I've tried nuerontin, elavil, migranal and lidocain but none seemed to help me. The only thing to abort an attack is imitrex. The problem being when I get 6 or more attack a day it's hard not to abuse it and then I think it does more harm than good. The imitrex tip I got from this site was genius and has changed the way I use it, so far so good. I tried 02 once in the hosp. but it didn't help. Of course Idon't know the specifics of rate, maybe it wasn't enough? Recently I decided to try supplements for help. Now I take feverfew, st. johns wort, vitamin B-2, and melatonin, we'll see? It's been about a week but the severity of the attacks seems to have been reduced, My fingers are crossed. Anyway that's a quick summary of me and my meds. I look forward to talking more, and often. Thanks again, for being here.

Title: Re: Just to say hi
Post by michael on Jul 28^th, 2007, 9:29am

Hi Soulroach and welcome.

I know what you mean about imitrex. After 30 years of suffering these things and being misdiagnosed, I read a magazine article that described them and the use of imitrex injections. I went of to my doctors with the article and got them prescribed.

They were the first things that had ever worked for me (nothing I had taken in the past had even touched the beast).

That was almost 10 years ago now and I thought I had found my miracle med. For the first couple of years that was true.

However, all of my cluster life I only had one attack a day whilst in cycle. I now get between four and six a day and I am convinced that they are rebounds from the imitrex (despite my neurologist assuring me that is not the case).

Pain free wishes

Mike