The Fabulous Migraine Underworld
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Come on guys, post something.....forum's at a stand-still.

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Sara79
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Post  Porsche Fan Thu 26 Apr 2012, 11:14 pm

I'll start first....

I know you guys are having a tough time, and quite honestly how often can you talk about migraines? Yes, they suck. They can't be treated well. The ER system doesn't treat most migraineurs well, and quite frankly after talking to some neuros they really could give two squirts about migraineurs.

I'm guessing most of us have just learned to deal with this disease/problem/hell....however you want to describe it.

Mine have been painful, but stable. I work closely with a couple of my docs to manage them, which keep me out of ERs. Sinus infections, colds, baro changes all are triggers which are painful.

My opinion is that there's only so much that we can say about M's. True. However, we've limped along as part of one community and joined another that please log in and say hello and give an update.

For me, I'm stable in terms of migraine, but running into a few things with my heart--well, hell, the rest of my body still. Monthly GP visits, 7 or so specialists on quarterly basis, and lots of medications. Currently I'm battling a sinus bug. I'm used to feeling like crap from all the rest of the stuff, but man a cold really irritates me.

Things have not been easy...I suspect a lot of us are not having an easy time. Please log in to say hello. Don't worry about posting--I know, I'm betting most of you aren't feeling well and frankly are tired of writing that you feel like crap.

However please try and post--this is a long-standing community that's part of a splinter that got thrown off because of "stuff." We'll that's past--what we do have is a group of caring individuals. I can see just from post counts regarding the number of clicks on a topic that people are reading. Please try and post. And if you don't have anything really to post, just start a topic. Heck, it can be about your favorite music, color, weather, or whatever is floating your boat at the moment.

I've known a lot of you guys for a long time...I've been nailed by these M's since 03 and it's tough...but I'm still living. The rest of my body could use replacement but I'm alive.

If you can, try and post an update. As usual, I wish you guys the best.

-mgb
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Post  30yrsofheadache Fri 27 Apr 2012, 5:23 am

I agree. Lately I am having a tough time posting because of our move this coming Monday/Tuesday. But I do come on and see if there is anything going on. It has been a bit slow! I promise to post more when I get settled in. My head is doing a tiny bit better right now, thank goodness cheers . I think it is a combination of lessening hormones and my surgery.
Hugs,
Cindy

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Post  Sara79 Fri 27 Apr 2012, 5:45 pm

Sorry, I've been in lurk mode the last two weeks. My head's been OK until today, but the new job stuff is exhausting. I've finished up the orientations, and will be going to longer shifts on fewer days per week, which should make things easier, since the roughest parts of the day for me are the commute to and from work. I'll have more time to get active here again.

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Post  milo Sat 28 Apr 2012, 7:56 pm

Awesome to see this posted! Glad to know that this board is the support it is meant to be. I'm sorry to have been neglectful. My plate would be full right now even without yet another nasty, prolonged bout with my darn head. Work is plain crazy, school is heavy (on a short break then back into an excellerated semester...ugh)

I have nerve blocks and botox injections on Monday then have surgery Friday. I'm trying very hard not to freak out about the surgery. Luckily work is super busy so it keeps my mind off of things....and figuring out how to provide help to the person who will be covering me while I recover has been very time consuming....next week will fly by very quickly.

I will try very hard to update...and suspect I'll be able to if things go well as I'll have so much time on my hands. If something goes wrong, I will ensure an update gets through to someone through my partner.

Fingers crossed that the pain meds they give me help out with my head as well.

I miss you all and hope to be around more often soon!!!!
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Post  Greeneyes Tue 01 May 2012, 12:47 am

Love and miss my migraine angels I love you

Hmm..what's been happening here? Boys and trying to get them to do their school work..grrr. My oldest is a senior and youngest a freshman in high school.

Hubby is fine..busy working.

Just haven't been on here..feeling yucky..

Sending love to all of you Very Happy
I love you greeneyes

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Post  Porsche Fan Mon 07 May 2012, 10:58 pm

here's an update....

i go in for another heart cath on wednesday to check the vessels for some chest pain i've had lately. cardiologist is going to enter the vascular system via ulnar approach--through the arteries in your wrist.

had a c-spine (neck) CT done due to some pain i've been having. had that done, and doc has ordered another series with my neck extended and compressed. they found some stuff on the first CT.

this may be helpful--we'll see.

otherwise, doing well, the usual. hope you guys the same.
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Post  Cluelesskitty Tue 08 May 2012, 12:31 am

That is a lot of work, Marc, serious work. Good luck with that!

Risa
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Post  Anna's Mom Tue 08 May 2012, 11:24 am

We have been recovering from our experiences in Phill

Any discussion of her getting K infusions here in our state were pretty much killed after her doctors read the hospital report from Philly stating that her big seizure/code was potentially from K. Yup, that sure killed it Sad

Her head pain totally switched from being in the front and sides of her head to the back of her head and neck. It has been several weeks of this "newer" pain. Most of it is in her Chiari scar in the back of her skull.

We saw her neurosurgeon a few weeks ago. He offered to do a Chiari revision surgery--to take a look inside J and to remove scar tissue. By doing so he would be removing her bovine dura patch and make a new dura patch with her own tissue. That sounded like a good idea to all of us, and she agreed. She is scheduled for surgery in July.

So we wait for July, hoping she gets better somehow so she doesn't need the surgery.

It has been a hard couple of months, and I'm sorry I haven't been very chatty.

But I do read the forum because I care about all of you here!

I walk A LOT to deal with stress! Hoping we get some nice warm weather soon.

Cheryl


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Post  milo Wed 09 May 2012, 12:33 pm

Thanks so much for the updates. Your struggle with Anna has been such a tough journey. I hope she starts feeling better so she doesn't need the surgery too!
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Post  Cluelesskitty Wed 09 May 2012, 3:23 pm

I am reading your CB journal entries, Cheryl and I am so sorry for everything that you guys have to go thru,
Anna especially.
I am always, always in awe of both of you, for your unwavering pose and keeping warm smile on your face
no matter what happens.

Indeed killing the K infusions for Anna is most unfortunate to happen, but I am not losing hope it will be possible someday.

Hugs, dear friend

Risa

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