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        New Message Board Archives >> 2003 Posts >> Ounce update and my neuro visit
        
(Message started by: Brassbear on Feb 27^th, 2003, 6:10pm)

Title: Ounce update and my neuro visit
Post by Brassbear on Feb 27^th, 2003, 6:10pm

Took Mary to the doctor today for her post-surgical checkup. She is at 60% on her recovery. That's exactly where the doctor wanted her so she is healing well. She has had some problems with post surgery depression and with the Crohn's disease that they found. She goes to the doctor on Monday for that. Unfortunately, last Friday Mary got a call from where she worked. They told her not to come back. In fact, they told everyone not to come back. They are closing their doors for good. Whoopee. There went half our income, gee, I wonder why Mary is depressed? ::)

I finally got in to see the neurologist this afternoon. The consult was written the first of January! The neurologist apologized to me several times. He said the referral consult was handled wrong and I should have been seen within 3 days. :o

At first he thought I did not have CH... but guess what? The beast showed up for her appointed rounds while he was in the room with me! Plus, Mary was there with me as supporter/observer and that went a long way. It didn't take him long to get me on O2 either. ;)

He gave me a script for O2. In fact, the VA is paying for it and they are having it delivered to me! He put me on verapamil and prednisone. He told me the prednisone had a LOT of side effects and he would leave it up to me whether to take it or not. And check this... he gave us a special number to call that ANYTIME I need care that I can get in touch with someone there at the hospital!!

I went through the routine blood test and I have to have to obligitory MRI, but that's ok. Not only did this doctor know what he was talking about, he treated me and Mary like we were human beings. ;D

Just wanted to let you guys know what was up. We will be getting back to our old lifes here pretty soon and will be posting and supporting regularly again.

Hang in there! We love you all! ;D

Michael

And Don, if you read this, anything we can do, you just let us know!

Title: Re: Ounce update and my neuro visit
Post by brain_cramps on Feb 27^th, 2003, 6:16pm

Sounds like you won the lotto with the neuro!

Hope all goes well on all fronts. Keep us posted,
grant

Title: Re: Ounce update and my neuro visit
Post by domm on Feb 27^th, 2003, 6:37pm

Brass and Ounce - I am happy to hear about the neuro. That's great news. Sorry to hear about Mary's job. Lots of that going on now. But getting on the path of healing is a huge part of the struggle.
Hang tough - things will get better.
domm

Title: Re: Ounce update and my neuro visit
Post by Roxy on Feb 27^th, 2003, 6:45pm

Brass,

Glad Ounce's recovery is on track...hope it keeps improving. I'm really sorry about her job, could be something better right around the corner though.

Sounds like you've got a keeper for a doc. Congratulations on that....you don't seem to find them like that very often.

Take care and hope ya'll stay PF,
Tracey

Title: Re: Ounce update and my neuro visit
Post by jonny on Feb 27^th, 2003, 6:49pm

Thanks for checking in Bear dude.

You take care of Mary and I'll watch out for the Don.

Be well

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

Title: Re: Ounce update and my neuro visit
Post by SommelierCH on Feb 27^th, 2003, 7:07pm

Mary and Michael,

It was the best of times and it was the worst of times. You just can’t keep a Clusterhead down. Keep fighting kids. I have been going through my own personal hell the last couple of months and I know that overwhelming feeling of depression that keeps trying to break through, but you are a team, and the support you show for each other is uplifting for me to see. I thought your cycle would have ended by now. What’s up with that? Try to get a script for Maxalt MLT 10mg. or Zomig ZMT 5mg. fast dissolving tabs that enter the body subcutaneously under the tongue. Used with O2, it kills “The Big One” in about 10 min.

All the best to you,
David J.

Title: Re: Ounce update and my neuro visit
Post by Mastifflvr28 on Feb 27^th, 2003, 11:29pm

bummer...and whooo hooo!! sheesh, lol.

But rox is right, something better might be just round the corner.

Both of you take care and continue to heal :)
Mast

Title: Re: Ounce update and my neuro visit
Post by Mark C on Feb 28^th, 2003, 12:50am

Good Doctor........Better Head !
CooL

Title: Re: Ounce update and my neuro visit
Post by suzy617 on Feb 28^th, 2003, 5:54am

Hey Michael, great news that you found a Dr. who actually knows whats going on. Also glad Mary is on the road to recovery and I'm sure once she gets back on her feet she will land herself another job.
Miss reading your posts, hope to see ya back soon.

suzy

Title: Re: Ounce update and my neuro visit
Post by Charlie on Feb 28^th, 2003, 6:13am

The glass is half full or half empty or something. Sorry about Mary losing her job but gee whillikers, did you find a neurologist. Sounds as good as they come and that's the way things should work for CH.

Good luck on all fronts.

Charlie

Title: Re: Ounce update and my neuro visit
Post by Brassbear on Feb 28^th, 2003, 6:17am

Mary's job loss is an immediate concern, but not one that is going to keep us down... you know, the old "this too shall pass"? We'll get down this path just fine. Just one more pot hole in the road of life! ;D

DavidJ: I don't know what's up with this cycle. After all, I'm a first timer. The doctor had good news and bad news. We both agreed that I'm probably near the end of a cycle. He said that since this started in my 50's I might never have another. He also said he thinks there is more going on than just the CH.

He checked me out pretty good. He said I had "occipital neuralgia", that is what gives us the soreness at the back of our heads and in the neck on the side of the CH. The CH itself actually causes the inflammation of the occipital nerve. He scheduled me for an MRI which I wil do in April to see what else might be going on.

The CHs changed their time table. Less symptoms and less severe, but still there. I was just happy to get a script for the O2 and get some medication going.

Not only will he not give me the Maxalt or Zomig, he took away my Imitrex. He said I could take it occasionally for my meegraines when they occur. He said an idividual over 50 with high blood pressure should never have been given Imitrex in the first place. He said that he wouldn't suggest me taking any kind of "triptan".That didn't sit well with me, it may have take a while to work, but it did work. He also said that anyone with a history of kidney stones should stay away from topamx as they can actually aid in the formation of stones!

BTW David, I lost that "new" email address you gave me. Gee, seems like everyone is going through some kind of crap this year. I think you're a survivor though. Hang in there, we still have some plans.... ;D

Will check in with more later and better support for all! We are getting our shit back together... just got to find a bag to put it in!!

Michael

Title: Re: Ounce update and my neuro visit
Post by SommelierCH on Mar 1^st, 2003, 9:10am

Michael,
I think you will find that the O2 will open up the doors of perception, helping you to remember what pain free feels like. Before O2, when I was in cycle, all I could remember was pain. Focus your body sense memory, to remember what pain free feels like. It goes hand in hand with Charlie’s “Dr. Wrights Technique”, and using ourselves as the medicine (it’s hard to have pure O2 always available). Since you can’t take triptans, the O2 might have to be hit multiple times, but the feeling of actually beating back the shadow, is so worth it.

Peace,
David J.