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        New Message Board Archives >> 2004 Posts >> WOW! I am not alone and Question?
        
(Message started by: Jim_Rockford on Apr 9^th, 2004, 7:11pm)

Title: WOW! I am not alone and Question?
Post by Jim_Rockford on Apr 9^th, 2004, 7:11pm

This site/forum is great! I have been Dx and suffering from CH for about 8 years now. When I first described to my neurologist what I was experiencing, he asked what textbook I just read on the disorder. It was not until I got home and did some research that I realized what he meant. I get a sharp pain behind one of my eyes, it tears and is red, my nares on the affected side becomes plugged, I have on average three flare ups/24hr period( Around 02:00, !3:00 and 21:00 hrs), I have a very bad period in the Spring each year lasting 2 months and drastic weather changes often trigger them. I am in the middle of a bout right now and get very discouraged as many of you must as well. It looks as if I may be a chronic sufferer as my headaches have been steady for over a year with the occassional flare up as I am experiecing now. I am going to start on Corgard (Beta blocker) tomorrow and hope it will help stop this bout and prevent future ones. I am not going to hold my breath though. I have tried tricyclics, verapamil, sandomigran and a host of other meds. By far prednisone works best but obviously can't be taken for great lengths of time and I only use it to try and break a cycle. I use ibuprofen on a daily basis during the period which reduces the symptoms somewhat. I'm sure this looks quite familiar to most of you. Now to the question...........I have had a relatively new symptom though and would like to know if anyone else is experiencing this. I have had an ache in one or both eyes upon movement of them. This is intermittent and seems to precipitate an acute attack. This ache causes me to move my entire head to look left, right, up or down instead of moving my eyes. Does anyone else experience this?

Jim

Title: Re: WOW! I am not alone and Question?
Post by jonny on Apr 9^th, 2004, 7:22pm

Welcome aboard.

Chronic is....one year without 14 straight days pain free.

As for your question.......Ive been here everyday for four and a half years and never read a post about an eye thing like that.....See an eye Doc, Dude.

.............................jonny

Title: Re: WOW! I am not alone and Question?
Post by Jim_Rockford on Apr 9^th, 2004, 7:53pm

Jonny

Thanks for the reply! I am definately a chronic sufferer then. I have been pain free for maybe 7 days in total over the last year. As for the eye Dr.....I was there last week and all was well. (Except for the damn pain that is)

Title: Re: WOW! I am not alone and Question?
Post by jonny on Apr 9^th, 2004, 7:59pm

Hang in there, Jim.....you are with family that knows what you deal with my brother.

Kick your feet up and read some, get to know the family.....These are the rockingest people you will ever meet when it comes to CH.

.........................................jonny

Title: Re: WOW! I am not alone and Question?
Post by Mr.Happy on Apr 9^th, 2004, 8:41pm

on 04/09/04 at 19:11:41, Jim_Rockford wrote:

Now to the question...........I have had a relatively new symptom though and would like to know if anyone else is experiencing this. I have had an ache in one or both eyes upon movement of them. This is intermittent and seems to precipitate an acute attack. This ache causes me to move my entire head to look left, right, up or down instead of moving my eyes. Does anyone else experience this?
Jim

Nope. No idea what that eye thing is, but man.....you're fukked. Go see a doctor. Have your radiation exposure levels checked. This ain't right, common, or salutary......
Great intro letter, tho....your trailer must have aluminum siding.

Quote:

tricyclics, verapamil, sandomigran and a host of other meds

C'mon.....spill yer guts. We got people that keep track..........when yer not watching.........year after year this thing continues.......among many........consult the Writ of Common Wisdom. Please specify mg/dose/day.

Quote:

By far prednisone works best but obviously can't be taken for great lengths of time

Oh Poo. If the stuff was that bad, our government would never allow it on the market. They _care_ about us.

Hey.....have ya checked out the Shroom crowd? (http://clusterbusters.com)

Always worth a look-see...
RJ

Oh yeah....welcome home, and all that.......heh...

Title: Re: WOW! I am not alone and Question?
Post by jonny on Apr 9^th, 2004, 9:28pm

on 04/09/04 at 20:41:58, Mr.Happy wrote:

Oh Poo. If the stuff was that bad, our government would never allow it on the market. They _care_ about us.

What a jackass, where did the dude say it was "That bad"?

Looks to me that it helps the dude....what board are you reading, hap?

.......................................jonny

Title: Re: WOW! I am not alone and Question?
Post by JDH on Apr 9^th, 2004, 9:41pm

Welcome home Jim.
You didn't mention oxygen, have you tried that yet?
It's helped many many people here abort attacks. It's cheap, safe and no side effects...check out the link
http://www.headachesupportgroups.com/oxygen/oxygen.htm

Jim

Title: Re: WOW! I am not alone and Question?
Post by Carl_D on Apr 9^th, 2004, 9:48pm

Jim,
Welcome to the fold. I agree with Jonny though - go see an eye doc. Sounds like you have some eye strain going on.

Peace,
Carl D

Title: Re: WOW! I am not alone and Question?
Post by Mr.Happy on Apr 9^th, 2004, 10:12pm

Eye doc no lo conteste.

Quote:

What a jackass, where did the dude say it was "That bad"?
Looks to me that it helps the dude....what board are you reading, hap?

Oh, fer Mell Gibson's sake........so I said Pred sux. I won't be the first....or the last.....or the one in the middle to say so either. Use as needed, take as directed, leave me out.

I ain't from Boston,
RJ

Title: Re: WOW! I am not alone and Question?
Post by Kevin_M on Apr 9^th, 2004, 10:22pm

on 04/09/04 at 19:11:41, Jim_Rockford wrote:

I have had an ache in one or both eyes upon movement of them. This is intermittent and seems to precipitate an acute attack. This ache causes me to move my entire head to look left, right, up or down instead of moving my eyes. Does anyone else experience this?[/b] Jim

It sounds like some sort of temporary paralysis of the eye muscles. When one loses their sight (which is not your case), they no longer need the use of their eye muscles for eye movement left, right, up, or down. Those muscles deteriorate and the eyes stay still.
We are definitely no doctors here but check into it, they are your eyes.

Welcome aboard. Got a good doc?

Kevin M

Title: Re: WOW! I am not alone and Question?
Post by Lizzie2 on Apr 9^th, 2004, 10:36pm

Hi Jim,

I really have no idea if this is anything like what you are experiencing..however I did have an eye issue for a time that seemed to spark an attack for me. I figure skate, and a lot of time when doing skating is spent going backwards and looking over your shoulder. Before a jump, you have to turn your head as far as you can and then look even farther with your eyes...as far as you can see. This used to almost instantly trigger an attack for me. But these attacks never lasted as long as the full blown CH's. I used to try to just turn my head as far as I could and then not look past with my eyes as long as I could still see I wasn't going to hit anyone or the wall. The risk of attack was just too great if I shifted my eyes too much. It was only ever my right eye that caused this problem though.

Welcome to the family!!!

Hugz,
Lizzie :)

Title: Re: WOW! I am not alone and Question?
Post by Rock_Lobster on Apr 9^th, 2004, 10:39pm

Herr Rockford
Is it mayhaps a sinus thing? Snout pressure pushing up there right before a CH?

Welcome....
Rock

Title: Re: WOW! I am not alone and Question?
Post by john123 on Apr 9^th, 2004, 10:44pm

Quote:

Oh, fer Mell Gibson's sake........

you are a trip mr. happy

Title: Re: WOW! I am not alone and Question?
Post by Charlie on Apr 9^th, 2004, 10:47pm

Welcome aboard and if you stick around, you'll find a lot of very good ideas about dealing with this horror. It seems to me that if this eye thing really bugs you, you should have it looked at....and perhaps without mentioning CH at the first looksee. Sometimes people start with the answer they want and work back to the "solution." Just a thought.

My forehead got warm and my eye kinda fuzzy for a time but just the one affected and not for a long time.

Here is a link to a technique that worked for me

http://www.netsync.net/~charlies/

Good luck and let us know how you're doing.

Charlie

Title: Re: WOW! I am not alone and Question?
Post by Jim_Rockford on Apr 9^th, 2004, 10:49pm

on 04/09/04 at 21:41:49, JDH wrote:

Thanks for the reply JDH! I have tried the 02 route with no success.

Title: Re: WOW! I am not alone and Question?
Post by Mr.Happy on Apr 9^th, 2004, 11:00pm

on 04/09/04 at 22:49:52, Jim_Rockford wrote:

I have tried the 02 route with no success.

Try harder. Follow all the instructions. Then try agian.

Keep huffing,
RJ

http://drfeller.com/despair/despair.jpeg

Title: Re: WOW! I am not alone and Question?
Post by Jim_Rockford on Apr 9^th, 2004, 11:07pm

[quote author=Mr.Happy link=board=general;num=1081536821;start=0#15 date=04/09/04 at 23:00:30]

Try harder. Follow all the instructions. Then try agian.

Keep huffing,
RJ

Thanks for the previous links and info RJ. Interesting to say the least. I have access to 02 at work and have tried it many many times with no success. I wish it would let me tell you!

Title: Re: WOW! I am not alone and Question?
Post by Mr.Happy on Apr 9^th, 2004, 11:20pm

on 04/09/04 at 23:07:16, Jim_Rockford wrote:

I wish it would let me tell you!

Me too. I wish I could hear the song you can't sing. Condolances.
Best,
RJ

Title: Re: WOW! I am not alone and Question?
Post by jonny on Apr 10^th, 2004, 12:12am

on 04/09/04 at 22:12:38, Mr.Happy wrote:

Eye doc no lo conteste.
Oh, fer Mell Gibson's sake........so I said Pred sux. I won't be the first....or the last.....or the one in the middle to say so either. Use as needed, take as directed, leave me out.

I ain't from Boston,
RJ

You didnt answer the question.

.............................................jonny