Found a cure for my intractable migraines!

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Found a cure for my intractable migraines!

Post  Can't believe it on Thu Aug 30, 2012 7:52 pm

This is my first post here, although I have visited this forum often for many years. I have had chronic, intractable migraines for over 15 years and have been on every maintenance and pain medication out there. anti-seizures, SSRIs, anti-depressants, beta-blockers, etc. Nothing worked, but the narcotic pain meds were my best option...at least I could have a few hours of semi-relief. Of course the downside of narcotics is that they are addictive, and after 15 years of use my tolerance was sky high and I realized I was addicted to them. It was so hard for me to admit this, because THAT's ALL THAT WORKED for me...it was truly terrifying. But I had to do something, because my life had become somewhat unmanageable...I have a 3 year old and being out of commission from 5 day headaches was not working. anyway, I entered an outpatient rehab facility in my town and laid my horrendous situation at their feet-- I suffer terribly from these headaches and now can't take the pain meds that make me able to deal. The doctor at the facility put me on suboxone, which is a drug people take to get them off opiates. I had nothing left to try, so I tried it (I feel like a complete guinea pig after all these years of pain and many, many meds). anyway, the long and short of it is this--I haven't had one migraine in over 7 months. I used to get several a WEEK. It turns out that suboxone is used in Europe for pain management, but they are only using it in the states at this point for opiate abuse. This post isn't about whether you use or overuse narcotics. whether you use them or not, TRY THIS! I am completely in shock that this has worked for me. Now that I know--definitively--that my migraines are gone, I hd to share this with you. I feel like I've gotten my life back, truly. so if there's anyone out there whose meds aren't cutting it, it's worth a shot. I would never post this unless I felt strongly that this could work. again, it doesn't matter if you are addicted or not; it's not even about that. Doctors have to have a special liscence to prescribe it if it is for ADDICTION, but any doctor can prescribe it for pain control. Good luck, and if it works for even one of you out there, it will make me so happy. I remember endless, sleepless nights reading this forum and hoping to find something to make the pain stop. If you have any questions about side effects (minimal for me), etc., please let me know!
Shawn

Can't believe it

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If I came off wrong...

Post  Can't believe it on Thu Aug 30, 2012 8:06 pm

...just read my post and I don't want people to think I'm "crowing" about finding a solution to my mig problem. if I came off that way I'm really sorry. I just can't believe I've finally found something that works and wanted to share the wealth!
Shawn

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Re: Found a cure for my intractable migraines!

Post  tortoisegirl on Thu Aug 30, 2012 9:14 pm

Thank you for sharing with us. I have heard some folks responding to this med. Quite interesting that going from an opiate to this med has completely eliminated your migraines. I'm in pain management on opiates for my headache, but I've been hesitant to purse this med as it can be difficult to treat breakthrough pain (pain spikes where a short acting narcotic would typically be taken on top of the long acting) or pain from an injury/surgery, as it blocks opiates. So glad you are doing well. Best wishes.

tortoisegirl

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Re: Found a cure for my intractable migraines!

Post  Anna's Mom on Fri Aug 31, 2012 8:53 am

Shawn, I'm so glad you posted this. It sure got my attention.

My daughter Anna's doctor of many years (her current prescribing doctor) talked about this several months ago. He said it was something he would try for her as a last resort. He told me there is one doctor in our whole huge multi-clinic system that prescribes it--with the special license. I do understand that any doctor can prescribe it for pain, but doctors are probably pretty concerned about prescribing something like this which is so out of the norm. Thus our doctor said he would give a referral to see the one doctor who has the special license.

We have been seeing a pain doctor off and on for a year (just to get his input on Anna's complicated situation) Our doctor wanted me to ask him about this. When I asked the pain doc, he knew nothing about it. He said, "That is used for addiction." Yes it is, but he knew nothing of it's use for pain management, and he was stumped. So I knew something he did not know. We have talked about other treatments, and in our last appointment he told me he learns things from me he has no knowledge of. It is because I read a lot of pain forums.

A couple of my friends have daughters with horrendous brain pain from complicated neurological issues. Their doctors wanted them to try Suboxone. One girl did try it, but I do believe the transition from opioids to Suboxone was rough...there wasn't enough time between the two, and her heart was racing too much to continue with Suboxone.

How did you make the transition? Can you share those details? How is your dose of Suboxone today? Did you need to raise the dose along the way? Or have you been absolutely fine?

What about the issue of not being able to take opioids if you are injured or for breakthrough pain? Is there something else you can take?

If you don't want to share these details in public, you can send me a private message.

But I am so thrilled for you, and I'm so glad you decided to come forward and share this at Ronda's. Thanks so much for sharing from your heart.

Cheryl
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Re: Found a cure for my intractable migraines!

Post  Migrainegirl on Fri Aug 31, 2012 9:07 pm

Shawn, we are always glad to hear of someone doing well. It gives us all hope, and possibly a new idea. Thanks for your post.
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suboxone

Post  rileyoday on Sat Sep 01, 2012 1:21 pm

I think everyone is happy for you. You must be thrilled. Even a day free of M is something to crow about. I get one a week down from 25 a month so I know what your talking about. I hope your relief last forever.

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Reply to Cheryl

Post  Can't believe it on Sun Sep 02, 2012 10:54 am

The trick with suboxone is that you need to have all opiates out of your system for 24 hours, or you will go into "precipitated withdrawals", which does not sound like fun. And once you are on suboxone, all opiates pain meds are blocked. That fact really, really scared me, as I was in the ER at least 2x month with bad breakthrough pain, and needed heavy duty narcotics to get out of the pain cycle. The good news--for me--is that, unbelievably enough, I have had no breakthrough pain; in fact, no headaches that 2 tylenols and 1 aleve doesn't take care of. Which still blows my mind. anyway, if nothing else is really working, you may find it worth the "gamble" of having to wait 24 hours to get the suboxone out of your system in order for other meds to work.
The trick is finding a doctor willing to prescribe it for pain. In my 15 year struggle with migraines I have found that if a doctor has never prescribed it, or doesn't already know about it, they are extremely reticent to try it. I had heard of suboxone, and googled doctors in my town who were part of the suboxone program, which for me was an outpatient rehab (which I actually needed!).

I am still on the same dose as when I started, which is 8 mg. Often heavy opiate users are stared at a higher dose and weaned off of it. I started, and remain, at a medium-ish dose, and have no plans to go off of it. For me, the side-effects were negligible, especially compared to the
out of it feeling I get from opiates. I take it once a day, when I get up, and that's it.
I really hope that you can find someone in your area so your daughter can give it a try. Maybe it won't work, but for me nothing was really working, anyway. I never expected my headaches to go away, I just wanted to get off my pain meds. It was a happy accident, but my bet is that suboxone will be used for pain control in the the U.S. In the future.

If you have any other questions, please feel free to ask me! I feel like I have my life back, and so does my husband! He, like you, had a really hard time watching migraines take their toll on someone he loves. Good luck with your daughter. I hope you find a solution, suboxone or not!

Shawn





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Re: Found a cure for my intractable migraines!

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