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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello all
        
(Message started by: fredf on Feb 10^th, 2007, 12:47pm)

Title: Hello all
Post by fredf on Feb 10^th, 2007, 12:47pm

Hello, just wanted to stop in and introduce myself.

I have had CH for 23 years now, they started when I was 19. I was told that I had migrains and it wasn't untill 02 that I was told by a neurologist that I had CH.
He told me that the bad news is There the most painful, but the good news , easy to treat! ( not true) I can't go back to him cause I missed paying him 80.00, that I thought I paid. He would not see me even if I paid in advance! So he let me go through a month and a half or so of pain for 80.00. What the fuck kind of doctor is that. A simple mistake. So much for taking an oath to help people, or is it just the ones that don't make a mistake and never forget to pay. Hell when I have my CH I cant even find what cuboard has the drinking cups in, let alone what bills are due.
As for the treatment he gave me, it didn't work. The only thing that will take away the pain is imitrex! and I can see that you all know the problems with that.
I can have up to 8 CH in a day at the peak of my episodes. I need a way to break the cycles slow them down, something.
anyway I just wanted to say hi

Title: Re: Hello all
Post by kimmiedawn81 on Feb 10^th, 2007, 12:58pm

Hi Fred! Sorry that you have these horrible things, but the good news is that we know what you're going through.

Your doctor said that clusters are easy to treat? Weird. I think that a lot of us take different prescriptions and have a variety of different abortives. What works for one person does not necessarily work for another. My advice is to look into finding another neuro.

Anyhow, glad you're here, but sorry that you had to find us. Please take care!

-Kim

Title: Re: Hello all
Post by BB on Feb 10^th, 2007, 3:28pm

Hello Fredf

Welcome to the family, sorry that you are here with us because of pain but we are glad we can offer you a family with real understanding.

There are heaps of very good information on the Board, just spend some time reading up on all of the threads. Brew some nice strong coffee and make yourself comfortable in the chair and read on.

Regarding medication to control CH, a few things are a must to try, as they work so well for many.

1- Oxygen : cheap and fairly safe, and can abort an attack in mins.
2- Triptans: such as Imitrex, Zomig, Maxalt etc, also can abort the whole thing in mins.
3- Prednisone taper: for bad or stubborn cycles, can take up to 75 mg per day, tapering off over 5 to 7 days to break the patterns.
4- Verapamil : doses may vary from 480 mg per day up to 1000 mg, needs to be monitored but can work very well in blocking most of the attacks.
5- For night attacks, try Melatonin from 3mg to 15 mg per night.
6- For day shadows and little ones, try Red Bull , oxygen, strong coffee etc.
7- During an attack, feel around the neck to see if you have a cluster lump, a hot tender swollen ganglion under the skin which is tender to touch, can be on back or side of neck, if you have one, apply ice there, it will help a lot with the pain. It may be inside your mouth, back of tongue on the roof of the mouth too, if its there sucking on ice helps.
8- Come here and share with us your life in cycle, whinge, moan, celebrate .... whatever, we will be happy to listen and give you any emotional/mental support that you may need.
9- If you like to try new things, look at Kudzu, Taurine, Shrooms etc also.
10- Other goodies to be discovered at a later date

Take care and wishing you many PFDAN ahead.

Annette

Title: Re: Hello all
Post by fredf on Feb 11^th, 2007, 11:16am

Thanks Kim and annette!
It is so nice to know that there are other people out there that understand! If you don't have ch you don't know and can never understand.
As for meds I have been on more than I can remember or want to remember. I have been using Ice from day one and it helps somewhat.
I don't know what i'm going to do the next time they start because I no longer have Insurance. Two and a half years ago I was injured at work and have been battling with the insurace company. Now it's over and well you can guess who won.
If I go on I'll just be ranting!
you all have a great day !

Fred

Title: Re: Hello all
Post by Jonny on Feb 11^th, 2007, 2:28pm

Hi Fred [smiley=wave.gif]

Title: Re: Hello all
Post by froggy on Feb 11^th, 2007, 3:30pm

Hang in there, you'll get it done, then done again. Welcome.

Title: Re: Hello all
Post by Guiseppi on Feb 11^th, 2007, 5:08pm

Welcome to the board, please try oxygen if you haven't already. Started at the get go, high flow non re breather mask it'll abort in only a few minutes. Again, welcome to the board and I do hope you find relief soon.

Guiseppi

I forget to qualify that statement....for ME...it'll abort in only a few minutes....don't mean to mis lead!!!

Title: Re: Hello all
Post by TonyG1 on Feb 11^th, 2007, 6:53pm

Hi Fredf !! [smiley=wave.gif] It looks like BB has you covered in terms of good info !! Not much I can add except wecome to the board ! I am sorry you had to find us due to this darned condition; however, glad you did !!

T.

Title: Re: Hello all
Post by Mattrf on Feb 12^th, 2007, 11:24am

Hay Fred, I am so sorry that a doctor would treat you so poorly over a lousy $80, it probably wouldn’t even cover a round of golf for the prick.
I am glad you found us and I hope you get PF soon especially since you have no insurance, hang in there and keep us up to date on what’s going on with you.

Matt

Title: Re: Hello all
Post by RichardN on Feb 12^th, 2007, 12:30pm

Hi Fred

Another vote for 02 here . . . fairly inexpensive and effective for 60-70% of us.

Be Safe, PFDANs

Richard