Absolutely AMAZING appontment with new specialist! SO EXCITED!

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Absolutely AMAZING appontment with new specialist! SO EXCITED!

Post  thegirlwithbrowneyes on Thu Mar 11, 2010 7:51 pm

So my husband and I went to see the new specialist at the Baylor Headache Clinic in Dallas. It was absolutely amazing!

He told me that since I started migraines at 5, he knew it aws genetic, and the Arnold Chiari was just an additional kink thrown in the mix.

He said that the DHE treatments I did last month were not done the correct way. Not enough days, and not the right meds to go along with it to counteract the side effects.

So here's my treatment plan:

March 29th, go into the hospital for a 5 day round of DHE.
Start new preventitive, possibly Topomax or Depacote.
Start the pain management program at the Headache Clinic including biofeedback, group, and meetings with a pain psychologist.

I was moved to tears of Joy during my appointment. For the first time in my life, I feel like someone actually LISTENED! And HEARD! It was amazing. My husband liked him so much as well.

He said "Migrainoisis does not have a quick fix...it's not a quick fix kind of problem, it requires a comprehensive approach requiring many treatment providers within a system, and we're going to get you relief and help."

You cannot imagine the relief I feel. I was nervous going to see a Headache Specialist, and not that I have a problem with Middle Easter doctors, but I usually find them less sympathetic and more scientific, but this man has a BIG HEART for Migrainers.

So for the next two weeks, I'm supposed to do what I can to deal, and then the 29th we'll start the inpatient DHE treatment for 5 days. I'm a little sad I'll be in the hospital during Holy Week as Easter week and weekend is my favorite time of year next to Christmas. However, I know that it'll be good to get treatment.

Oh and I'll be in a Baylor Hospital, on a floor that specifically treats migrainers with the DHE treatment. The patients are all from the Headache Clinic and the nurses are SPECIFICALLY trained to do the DHE treatment.

I've called so many people today and told them just how excited I am, I've posted on Facebook and I feel like shouting from a mountain top (or a very tall building here in DFW) "A DOCTOR ACTUALLY LISTENED TO ME!!!!!"

Wishing everyone pain free days,

LL
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Re: Absolutely AMAZING appontment with new specialist! SO EXCITED!

Post  HeelerLady on Thu Mar 11, 2010 7:55 pm

FANTASTIC!!!!

So happy for you and I hope you get some results and soon. Smile Just wonderful that you have a team willing to work with you and actually treats you like a person.
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Re: Absolutely AMAZING appontment with new specialist! SO EXCITED!

Post  Stillhurtin on Thu Mar 11, 2010 8:23 pm

Congrats !!

What a 180 from your last post. I've never had any of the behavioral/ psychological treatments...I'll be interested to hear how you like it!

I hope all goes well and you keep shoutin from the mountain tops!
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Re: Absolutely AMAZING appontment with new specialist! SO EXCITED!

Post  AuntieBubbs on Thu Mar 11, 2010 9:18 pm

LL, that's wonderful. I'm so glad for you. Be sure to let us know how the week in the clinic goes!
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new appt. new specialist

Post  dailyha-rose on Thu Mar 11, 2010 11:38 pm

well, i have had a terrible 3 days. that after what i thought was my biggest M. last fri. sleep has not come easy. thought i would see if anyone else was up awake. so glad to see your posting. it is so nice to hear good news from another chronic pain friend. especially such uplifting news. i hope everything continues to go well for you. hope you let us know how you get along. with that happy thought, i can actually feel like sleep is coming on. good luck!

rose sunny

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Re: Absolutely AMAZING appontment with new specialist! SO EXCITED!

Post  Ivy on Fri Mar 12, 2010 3:33 am

Glad to hear that you found a good doctor!
Hang in there
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Re: Absolutely AMAZING appontment with new specialist! SO EXCITED!

Post  kw on Fri Mar 12, 2010 6:48 am

Hey brown eyes. I'm from Texas too, as if you couldn't tell from my pic! haha Shout from a tall building in DFW, maybe I'll hear it here in Lampasas. Smile I'm so glad you are getting great news. Wish I was closer to Dallas, but I have a great doc & I'm doing ok. So happy for you & isn't wonderful when your husband likes your doctor too!!! Good luck!
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Re: Absolutely AMAZING appontment with new specialist! SO EXCITED!

Post  Paradox on Fri Mar 12, 2010 9:36 am

Go, Browneyes, go Browneyes! YAY! So happy for you!
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DHE?

Post  Guest on Fri Mar 12, 2010 9:38 am

Please tell me what DHE is? Thanks. PS So glad you're happy!!

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Re: Absolutely AMAZING appontment with new specialist! SO EXCITED!

Post  Rachel328 on Fri Mar 12, 2010 9:40 am

So happy for you, browneyes. I've gone that same route here in Philadelphia.... DHE for 5 days (I was in for New Years Eve... that was a bummer), group therapy while there, etc. So PM me if you have any questions about it.
So glad you found a doc that listens to you. It really does make all the difference in the world.

Rachel

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Post  thegirlwithbrowneyes on Fri Mar 12, 2010 10:01 am

DHE .45 injections are a treatment used to end a cycle of migraines. It's used when other medications FAIL to relieve a cycle. I've been in a 3 month cycle now.

It's an iv injection and is used along with anti naseau medication to counteract the vomiting that might occur.

The reason it is done in a hospital is there are some serious side effects that CAN occur in SOME people including Cardiac Events (difficult breathing, etc.) and high blood pressure.

When I had it in February, I was in a horrible hospital, on a floor i'm pretty sure was psychiatric patients, and the nurses just didn't seem to know what they were doing. Each one did it different, and either pushed it too fast, gave it too soon after the Regalin injection, and other mistakes. I'd vomit violently after each injection (every 8 hours) and when I'd call for a nurse to help, it would take them 15 minutes to respond.

I've been assured that I'm going to a floor in a good hospital with nurses who are spefically trained in giving these injections properly.

I hate the hospital, but I hate missing my life worse. I hate not getting to spend time with my husband because I have to go to bed and turn out the lights, and I hate not being able to do family and social activities because of getting sick.
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Re: Absolutely AMAZING appontment with new specialist! SO EXCITED!

Post  tecky on Fri Mar 12, 2010 4:38 pm

Your new doctor sounds like a keeper. It was kind of him to let you know that it will be a long process in trying to turn the migraines around, since you started at an early age. His approach will help to keep your expectations at a healthy level and eliminate some of the guilt for not getting better right away.

I hope your hospitalization and DHE treatment brings you positive relief.

Take care.

Becky flower
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Re: Absolutely AMAZING appontment with new specialist! SO EXCITED!

Post  Anna's Mom on Sat Mar 13, 2010 9:12 am

I wish for you all the best with your new doctor and new treatment plan. Never lose hope!

Cheryl
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Cheryl

Post  thegirlwithbrowneyes on Mon Mar 15, 2010 10:51 am

My new doctor said that the Chiari had obviously been taken care of completely, and that I had been suffering with these migraines years before the Chiari was found. He said it was unfortuante, but that I had been "blessed" with both Migraines and the Chiari, but that the Chiari had blinded doctors as of late from discovering the genetic migrainosis I'm suffering from. How is your sweet Anna?
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re: Chiari

Post  Guest on Mon Mar 15, 2010 12:03 pm

Have your migraines stopped since discovering the Chiari?

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Re: Absolutely AMAZING appontment with new specialist! SO EXCITED!

Post  Anna's Mom on Mon Mar 15, 2010 1:19 pm

Anna had a new brain MRI last week, and it looked good. So I feel like we can put her Chiari behind us. Still have questions about her intracranial pressure though. If those questions get resolved (dream on), then we will focus more on migraine disease (like you are doing).

Cheryl
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Cheryl

Post  thegirlwithbrowneyes on Mon Mar 15, 2010 3:22 pm

Well,I am continually praying for her and you!
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Symptoms

Post  ChinChunPie on Mon Jun 11, 2012 6:15 pm

Exactly, what are your symptoms???

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Re: Absolutely AMAZING appontment with new specialist! SO EXCITED!

Post  Cookie Monster on Tue Jun 12, 2012 10:25 pm

Glad to hear your happy news. Sounds like a really comprehensive program. I was on DHE for a few months and ended up self-injecting for a while. That nice drug got me through my wedding. Getting off of it wasn't much fun though. Sad
I guess it is dangerous to stay on it indefinitely because it can damage the heart. Anyways, I hope it works for you and that you find the answers you are looking for.

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