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Post  milo on Wed 14 Aug 2013, 8:39 pm

I went in for my injections today (Botox and nerve blocks). I did not bring the meds with me, and was worried that the doc would take offence. I asked if we could please try not doing the injections in an attempt to break my pain cycle. The doc was ok with it. I'm already more then two weeks past my normal date.

We discussed the minimal but noticeable change in my migraine pattern since changing my diet. We all felt it was worth trying to stop the injections as a trial. He even plans to be my back-up and will see me urgently if needed.

I'm really nervous as the last time I did this it was hell and I seriously considered ending my struggle.

He gave me an arsenal of meds, but the whole goal for me is to get on as little as possible.

I also see a new internist for the first time tomorrow. I'm hoping to get some answers on my auto immune issues.

I'll update when I can. Please send me some spare positive thoughts my way. Thanks
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Post  Porsche Fan on Wed 14 Aug 2013, 11:36 pm

Milo,

Wishing your the best of luck....

I hope the new meds do respond. You deserve a break.
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Post  milo on Thu 05 Sep 2013, 4:48 pm

So, that didn't last long!!!! I just got back from making a very painful trip to my pain specialist for injections and nerve blocks. I would have been in a few weeks ago already but my specialist was away.

I'm really sad. I was really, really hoping that my diet and lifestyle changes were helping. #%?€

The doc tried to talk me out of doing my school and working so much. Instead I'm supposed to embrace my pain and accept it. Ummmmm.....no thanks. (I acknowledge I am blessed to have this doc and can forgive the occasional sermon about accepting my migraines). I didn't mention to him that my work has me flying all over the country for the next month. Smile

I guess that means I'm holding on for two things.....a new miracle drug or relief when I hit menopause. %#€£

Thanks for reading my rant. I'm gonna cry on my ice packs now ( if there are any tears left after that horror story of a procedure).



PS. The injections hurt about a thousand times worse when you are already in a high amount of pain!!!!
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Post  7777Trinity on Thu 05 Sep 2013, 7:16 pm

Milo
Don't bank on Menopause ending the migraines, I have been in menopause since 2007 - the hot flash Queen and the migraine monster still shows up like clock work, 12-17 days every month...

I go to my Neuro tomorrow to see if he will put me on a pain medication to take daily. We noticed when I had my thyroidectomies, one Nov. 2011, the other Jan 2012; while I was on Tylox after coming home from the hospital I didn't have any migraines. First surgery it was 14 days free! Second surgery it was 20 days free!!

He probably won't but I will ask for Pain Management referral. Hang in there...I wish there was an answer we could all grab onto.

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Post  tortoisegirl on Thu 05 Sep 2013, 8:05 pm

Milo-Sorry you had to return to the injections. Hope you get the pain back under control soon.

Trinity-Going on a daily opiate pain med made the most difference in my pain levels, and has been the only thing to truly work for me. Definitely get a pain management specialist referral because even if your doctor is willing to prescribe one, they don't have as much training in that area.

For migraines, it would be safer (as far as rebound potential) to be on a pure opiate, not a combo one, although I've never noticed anything. As long as my pain levels are lower, I wouldn't care if I was in rebound anyways.

Methadone has been the best med for me. Thankfully there are more options nowadays, since everyone responds to the meds differently. Most are given a daily long acting med plus something short acting for acute "breakthrough" pain.

Tolerance is tough though, and I'm on a very high dose for my age. Its scary to think about where I will be able to go from here. Thankfully I have my doctors on my side with this course of treatment, which is rare for headache. I've been lucky to find doctors willing to prescribe opiates for headache, especially in my 20s. Best wishes.

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Post  milo on Thu 05 Sep 2013, 9:12 pm

I have no choice but to bank on it Trin. I literally have nothing else left.
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Post  30yrsofheadache on Fri 06 Sep 2013, 3:14 pm

Banking on Menopause here, too Milo! At least I no longer have to work. That is what keeps me sane (and lonely). And then there is the guilt for not contributing to our income:evil: No easy answers. I admire your courage to keep up with work and school.
Hugs,
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Post  7777Trinity on Sat 07 Sep 2013, 10:36 am

migraine today...I am so tired of hurting and not being able to think!!
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Post  milo on Sat 26 Oct 2013, 9:00 am

I know I've been AWOL lately. Sorry. I bought a new iPad and couldn't get the site up on it. It wouldn't respond when I would click Classic Version. Hmmm

I have been on a several week medication vacation! Well, kind of several months. First I tried to stop my injections but that failed miserably. I had to take so many meds to kill that mistake! So after that settled down a few weeks after my injections, I looked at my life.

I don't want this life! So I was in bad shape,made even worse by a flight. I was so bad I thought I'd had a stroke. I was days away from a work trip across the country and I just had to stop it all. I cancelled my flight and immediately worked out a plan to reduce my meds.

I'm fat and in constant pain. The pain in my head gets treated by meds that cause so many ache and pains in my body. So I stopped them all. I tapered a bit, but was going through withdrawals so I figured I'd just go for it anyways. I had almost three weeks of withdrawals. It was painful. I was off work for the worst of it.

So now I have a clearer picture of my baseline. My body has WAY less aches and pains but my neck injuries are much more evident. Some days I can trace the pain pathway directly from my neck up around my ear and into behind my eye. My headaches are not improved in any way.

Now that I'm through the detox, I am willing to take something if I get to a 7-8. I'm keeping very close track of anything that goes past my mouth because I don't want to have to withdraw again. I have not figured out which is worse.....living on pain meds or surviving without. I honestly don't know!

This really, really sucks!
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Post  Platypus on Tue 29 Oct 2013, 8:02 pm

What pain meds have you tried?
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Post  milo on Tue 29 Oct 2013, 11:38 pm

Pretty much every standard pain med. I have not moved to the patch or considered methadone. Most pain meds won't rid me of this monster. Emtec with Percocet for breakthrough has been my main for a very long time. Sad
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Post  Platypus on Wed 30 Oct 2013, 3:29 am

Hmmm. Well it's good to know your HA isn't rebound/MOH. The opiates are a double-edged sword regardless. I don't think I could live w/o them but they have serious issues.

I'm learning from the cluster people about oxygen. It didn't work for me either, but they say there are a number of parameters you have to get right or it can fail. So I'm going to try again w/ their playbook. Will report...
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