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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Here is my story......I am new
        
(Message started by: nosfed01stang on Jul 6^th, 2004, 2:48pm)

Title: Here is my story......I am new
Post by nosfed01stang on Jul 6^th, 2004, 2:48pm

It all started about 5 years ago (I was 22 at the time) and the headaches started. I went through a series of tests, medicines, and doctors. I tried everything from lortabs, stadol nasal spray, tylox, imitrex, and I forgot what else. This went on for about 2 years and they quit. The final diagnosis was a combination of cluster and migrane headaches. The Mri's showed a small group of blood vessels on the back of my brain that aren't supposed to be there but the docs were not sure if that is the cause. Well here I sit at 27 and they are back. The burning in the neck, the pain in the head so bad that it feels as though you have been hit with a sledge hammer, the weak eye............yep......it all sucks. Any wonderful ideas? [smiley=huh.gif] :o

Title: Re: Here is my story......I am new
Post by Superpain on Jul 6^th, 2004, 3:09pm

Oxygen, for one....
Read up and become informed!
welcome!

Title: Re: Here is my story......I am new
Post by thomas on Jul 6^th, 2004, 3:31pm

Where is your pain concentrated, the neck burning thing has me confused. [smiley=huh.gif]

Title: Re: Here is my story......I am new
Post by Superpain on Jul 6^th, 2004, 3:37pm

I get a neck burning and tightening too.

Title: Re: Here is my story......I am new
Post by thomas on Jul 6^th, 2004, 3:38pm

on 07/06/04 at 15:37:13, Superpain wrote:

I get a neck burning and tightening too.

I only got that once, it was after stealing a horse in Carson City. ;) Damn noose.

Title: Re: Here is my story......I am new
Post by nosfed01stang on Jul 6^th, 2004, 7:42pm

It is right at the base of my skull. Then it travels up from there. It feels like a pinched nerve on crack. Your neck gets stiff and feels like it is on fire.

And Thomas.........you need to learn to ride better it sounds like.... ::) [smiley=laugh.gif]

Title: Re: Here is my story......I am new
Post by Kris_in_SJ on Jul 6^th, 2004, 8:11pm

Welcome - sorry you have to join us.

I get neck burning too, though it's more like a burning in the back of my throat - radiates down from my eye. Very weird ...

My suggestions ... get thee to a doc - preferably one that specializes in CHA. There are plenty of meds to try that weren't on your list (and forget the narcotics - bad for you and not helpful). Read everything you can on this site and print out a few to take the the "wonder doc" you're going to go to. As Superpain said ... O2 is great!

My preferred cocktail: Verapamil 480 mg prevent, Prednisone taper, Imitrex injects for aborting.

The cycles are still hell, but are much more tolerable because of the above. I'm sure you'll get lots of other advice, as well. Good luck - keep us informed - don't steal any horses!

Hugs and good wishes,

Kris

Title: Re: Here is my story......I am new
Post by Samantha_Smith on Jul 6^th, 2004, 8:20pm

I'll second that advice to see a neuro who specializes in CH or at least get another opinion from a general neuro. I'm concerned about the blood vessels in the back of your brain. Good luck.

Title: Re: Here is my story......I am new
Post by don on Jul 6^th, 2004, 8:21pm

Quote:

My preferred cocktail: Verapamil 480 mg prevent, Prednisone taper, Imitrex injects for aborting.

Nectar of the Gods.

Thomas, stay out of Carson City.

Title: Re: Here is my story......I am new
Post by nosfed01stang on Jul 6^th, 2004, 9:47pm

The prob with my wonderful town is that the nuero's we have here are not worth a sh#t. I see a pain management specialist for my back (if you consider feeding you pills pain management). I saw the "best" nuero in town a few years back when I had this crap the last time. I even went to Nashville. The prob is that nobody can tell me what is causing them and nobody can tell me what those blood vessels are on the back on my brain. All of this started when I had a "tumor" removed on the side of my head 5 years ago. They tested the "tumor" for cancer and said it was pre-cancerous. Since having that removed, you wouldn't believe all the shit I have been through. I can deal with the back and all that on a daily basis (of course it has it's bad days as well) but these damn headaches are 10 times worse. I dunno......I wish none of us had to go through this crap.

Title: Re: Here is my story......I am new
Post by thomas on Jul 7^th, 2004, 10:44am

As far as "good" neuros go, make sure they are a headache specialist first and a good neuro second. And the neck thing, mine gets stiff after about 4-5 days into a cycle, my neck gets stiff, never burns, that's why I asked the question. ;;D

Title: Re: Here is my story......I am new
Post by Superpain on Jul 7^th, 2004, 3:37pm

I get a knot at the left side of the base of my skull that flares up just before I get one. The knot stays prevalent throughout my cycle. It's like a thick rubber band wrapped tight aroung that muscle. I think I've seen it referred to as "ganglia". Anyway it's usually the source of the "first warning" feeling before I get hit.

Title: Re: Here is my story......I am new
Post by thomas on Jul 7^th, 2004, 3:52pm

on 07/07/04 at 15:37:19, Superpain wrote:

That is affectionatley known around here as a "cluster-bump" ;;D Some gets it, some don'ts. I don'ts. ;)

Title: Re: Here is my story......I am new
Post by nosfed01stang on Jul 8^th, 2004, 11:53am

To tell ya how good the docs are around here.....when all this started a couple of years ago, me family doc referred me to the "best" nuero in town. I went to him and everything seemed fine. He ran some tests and then started to mess with my neck. He said "your neck is awfully stiff I think we need to run a test to see if you have menangitis (sp?)". I said ok (not knowing what this involved). I asked what kind of tests and he said a spinal tap. He said we need to do it right away and wanted to do it in his office that afternoon. I said uhhh NO that we could do it at the hospital the next morning. I went home that night and did some research on this "test" and found out it won't be fun. Well, the next day arrived and off to the hospital I went. B4 the doc was done, he stuck me 12 times trying to find spinal fluid (with no pain meds on top of that). I was ready to kick his ass but did not have the energy to after all of that. Finally he sent me to radiology to have it done and I never felt it. Then I had to stay in the hospital over night cause he didn't want to send me home with that many holes in my back. ::)

Title: Re: Here is my story......I am new
Post by Kris_in_SJ on Jul 8^th, 2004, 9:07pm

I'll say this again - don't steal horses, but do get yourself to a a new doc. You don't necessarily have to have a neuro who's specializes in CH - more than anything, you need a doc who's willing to listen, learn, and try various CH treatment regimens.

I gave up my neuro in favor of my GP. The neuro always thought his way was the only way. My GP was willing to read what I brought him and experiment. The best CH minds are on this board. Forget narcotics, stop letting docs experiment on you, and find someone who will work with you for a change. It can happen.

Hugs and best wishes.

Kris

Title: Re: Here is my story......I am new
Post by 911please on Jul 9^th, 2004, 4:14pm

Another newbie here to this site. I am in a cycle that has been going for 19 days. I as well have an extreme tightening at the base of my head in the spine region, that is of course minor compared to the temples bursting. Just wanted to get my 3 cents in on the issue of knots in the neck.

Doug... ::)