My botox experiment (huge cranky rant, fyi)

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My botox experiment (huge cranky rant, fyi)

Post  Sara79 on Thu 15 Oct 2015, 7:32 am

So the migraine is pretty much keen chronic in the last 30+ days I've had 36 migraine free hours. my primary care doctor referred me into the neurology team again, which I was fine with, it's been a while I figured let's see if there's any new tools.


They suggested Botox and I looked into it and checked with my insurance company and decided to go ahead and try it. On the day I show up for the appointment itself I get in there and I'm signing all of the 'please realize you're getting shots of a neurotoxin, if we screw it up we can kill you, heads up.'


I flipped the next page over and there's a Price tag...almost $2300. I don't have that kind of money! I just about fainted in the waiting room and I did end up crying. The office ended up talking to my insurance company and to go through with it was going to be about $1000 which was still hundreds more than my insurance company led me to expect.

So, I have not and will not be getting Botox. If anybody needs a name of a neurologist to not go to in the Kansas City metro please PM me because I will totally name the doc's name I am really unhappy with him at the moment

Had to wait a week to be calm enough to post this, last week I'd have ended up cursing and crying writing this post

Frustrated that I'd called, gotten a price, and when I get there, they inflate it dramatically. Guess I'm staying on the daily triptans. <shrugs>

Sara79
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Re: My botox experiment (huge cranky rant, fyi)

Post  Cluelesskitty on Thu 15 Oct 2015, 2:49 pm

Gosh, Sara, that really sucks. money or rather lack of them  always  ruins good prospects for us sick peeps.
I was once lucky that an angel neuro got an idea to give me a free leftover Botox at the end of the day, from all the other paying patients.
( I don't recall how often I received it, but I think once a week maybe)
perhaps you can negotiate something like that?

Don't loose heart, all it take is one good person, willing to go extra mile.
you see, the bottles they store the Botox in,  they always have some left over after exact mg or ml required for someone,
and if only they kept all these bottles throughout the day, that together  would be enough for one person. it is still good stuff.

I will keep my fingers crossed for you Sara!

Risa

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Re: My botox experiment (huge cranky rant, fyi)

Post  Sara79 on Thu 15 Oct 2015, 4:37 pm

I would love it, but I don't think this Neuro is that nice, considering that they wouldn't write off about 25% of the pt portion, which still had then earning $100s for a half hour appt, above the cost of the medicine. I'm working on a discount card through botox itself, which exist, fyi everyone. Then I'll find a different Neuro, maybe back to the one at the teaching hospital in the metro, the jerk was the one my primary worked with the midst, which was why I went with them

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Re: My botox experiment (huge cranky rant, fyi)

Post  7777Trinity on Sun 18 Oct 2015, 12:23 pm

Sara
Gosh I hated reading how you had your hopes up and then everything fell apart. I do have one idea, not sure if you can get anyone to do it. Would Neuro or Pain Management inject a block instead of Botox in the same site areas? Something like Lidocaine? I know the Lidocaine actually works if you can get it.

If anything, it would at least break the daily cycle of pain for a bit and give you a chance to think what to do next. The other thought for the daily migraine is, are you rebounding? What I mean is, are pain meds causing you to rebound?

I asked because they did and still do that to me. Now I take something to "put me down" if the Frova doesn't work and try to do the pain medication only when I have to be somewhere. It has helped with fewer rebound. I use 2-3mgs of Xanax as my "put me down" medication. I sleep for about 14-16 hours and normally wake up without the migraine.

I had Migraine Nerve Decompression and Excision surgery 16 months ago in Boston. I normally have had only 3-4 migraines a month since until September, then I was hit with 15 that month. This month is better, not sure if it was a weather thing or what. Again, I am so sorry that you are going through this! I hate it for all of us!

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Re: My botox experiment (huge cranky rant, fyi)

Post  Cluelesskitty on Sat 31 Oct 2015, 5:38 pm

Well, try whatever you can, Sarah, I am sure  something positive will come of it.
Trinity also have good ideas, hopefully something will work for you.
Keep us posted, please!

Risa

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Re: My botox experiment (huge cranky rant, fyi)

Post  milo on Fri 29 Jan 2016, 9:04 am

I'm so sorry that happened. I can put myself in yours shoes and immediately feel the emotions you had when you saw that price tag. Anger, sadness, desperation, hopeless, so many at once.

Botox has been the one thing that gives me a portion of my life back. Over the years our medical has covered and not covered it. I was paying about 900 a go for a pretty long time. Luckily it's currently covered again. I never know when that changes and it has me scared every time I go to pick it up.
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Re: My botox experiment (huge cranky rant, fyi)

Post  Cluelesskitty on Fri 29 Jan 2016, 2:43 pm

Oh, don't even start me on our medical care! Evil or Very Mad

Risa

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Re: My botox experiment (huge cranky rant, fyi)

Post  Sara79 on Wed 03 Feb 2016, 12:01 am

Risa, our medical care can be excellent, it's just expensive and takes a lot of hunting. I really like my primary care doctor, his office knows me, and will do little things that help so much on a bad day.

One day they ran me back to a room very quickly (and before others) to get me away from the noisy family of 7 and the lights. I had to still wait my turn, but I could wait somewhere quiet and dark. Those things are why I stay with them, even when I hear things I really like about other people's primary care docs.


So, speaking to everyone, I finished up 2015 with a bang! As you all knew, the migraines had gotten horrid, and my energy and enjoyment in life were completely gone. I'd had no energy and as the weather was getting colder, my cold weather asthma was acting up (my biggest asthma attack cause is very cold air).

In November, my father went inpatient, diagnosed with blood clots, they started in his leg and went to his lungs. He's doing well now, he's trying to talk the doctor into letting him go back to work on warfarin (an anticoagulant). Doc is hesitating because he has a physical job, and they don't want him to get a deep cut or big bruise.

The Monday after the U.S. Thanksgiving I woke up with an awful migraine, debated calling in, and finally told myself to suck it up and take a shower. I got downstairs and decided I was going to throw up, so ran for the bathroom and did so. Caved and called in to work, and then went to run toward the toilet again.

I managed to not throw up that time, empty stomach helps, and I thought I'd decided to lay on the floor from dizzy and nauseous, but later on we decided that this was the first time I'd passed out. Eventually heard DH rummaging in the kitchen and stagger out to talk with him. The next thing I knew I'm on the floor, with hubby in my face. We decided to call emergency assistance, misty him deciding, but I'm not overriding.

They come out, and determine I'm not pregnant, but needing oxygen, and were ok with helping me to the car, and hubby driving, to avoid the transport fee. I try to get up and pass out again, then I try to throw up some more, at this point, I'm getting a ride! I get iv zofran and carried out of my kitchen.

Do a batch or two of tests later, and I've got a diagnosis...blood clots in my leg that broke loose and went to my lungs! DVT's and acute bilateral PE's in all five lobes, aka the exact same thing as my father. They kept asking him if there was a genetic component, after getting the data that a bunch of them had treated my father only ten days ago, nobody had to ask me that.

I wasn't in as good of shape as my father physically even before this, the migraines make it tough for me, as raising my blood pressure was a trigger for the migraines. I went home from the hospital wearing oxygen, and now, over two months later I'm still wearing some, however I got to go back to my job last week, only half days, but I'm glad to be getting out of the house.

I keep counting my blessings, if hubby hadn't have gotten let go from his job last year, I wouldn't have had him home to catch me before I feel, and call for help. At that point, I couldn't get to the phone on the cradle up high on the wall. And I'd called into work, so it would have been Wednesday at least before they called my emergency contact, and I would have died by that point.

My odd moments...the migraines have been much better since I've gotten this diagnosis. I think the extra oxygen is helping me with my migraines. I'm also wondering how long I was running around with a couple of clots, I feel better than I had in a couple of years.

So...how was everyone else's Christmases?

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Re: My botox experiment (huge cranky rant, fyi)

Post  Cluelesskitty on Wed 03 Feb 2016, 3:22 pm

My Gosh, Sara, what a scary thing to happen! Indeed, the angels were protecting you so you weren't alone at the time.
I can imagine how disturbing the whole thing must have been then and even now,  looking back "what if..." - scary, scary, scary!
But I am very glad they found out what is really happening to you (it is so easy to chalk up the fainting to migraine, isn't it?) and treated you accordingly.
At the same time, I am very sorry both you and your father  suffer from blood clotting - like everything else wasn't enough!
I am hoping Warfarin will do its job, and there will be no more clotting in the future.
I feel for you, Sara, you must be drained from all those experiences. I wish you great and speedy recovery, for both you and your dad

As for me, thank you Sara my Christmas was quiet. I was able to make basic dishes for Christmas Eve
and then we were invited to friends for the first and second day, so that saved me from cooking again and then cleaning afterwards.
Otherwise it was uneventful, but I am thankful for this Smile

Please keep us updated, Sara.

Risa

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