NEW chronic migraine diagnosis, help appreciated

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NEW chronic migraine diagnosis, help appreciated

Post  Conor on Thu Apr 11, 2013 2:24 pm

Hi all. New member here.

Recently been diagnosed with transformed/chronic migraine. Currently suffering daily with pain ranging between 5-8 most days. A little history:

Had major back surgery for scoliosis at 19 (25 now) and was on low regime of Percocet for years for chronic pain. Two years ago, started getting severe neck and shoulder pain on my right side. Docs increased opiates (I realize they contribute to rebound, have been off for a week now after an agonizing withdrawal period). Was put on Valium when neck and shoulder pain continued to get worse (about a year ago when migraines started) For the last year or so I've been getting migraines on and off but increasing in frequency and severity up until about 2 months ago when they decided to become permanent.

Meds I've tried in past include:
Topamax 50mg--felt like a zombie on even that low amount
Fioricet-- has lost efficacy completely
Imitrex - both tablets and injectable form. Has helped some and continue to use occasionally when having extremely bad days. Have never taken more than 10 in a month

Currently:
Gluten-free and dairy-free diet
Magnesium 400mg 2/day
Flexiril 10 mg 3/day (have been on for back pain since surgery)
Zonicimide 50mg
Valium 5mg tablets up to 6 in a day

Also, I have been working in conjunction with a PT and dentist to use an ALF dental splint which helps my neck/shoulder/jaw pain, and for the first month, eliminated all migraine symptoms at the time (5 months ago now)

I've seen a neurologist specializing in headaches and am scheduled to try Botox in May. After having finally gotten off Percocet 5/325 tabs (6/day until tapered off last week) I've found initial relief but now am experiencing worse migraines than ever. Most days right now are 7-10 range. I'm basically incapacitated now and rely on others for help with grocery shopping etc.

I've received lots of tordol and phenergan injections at my PCP over the last year and even those are not working as well either. If anyone has any ideas, thoughts, suggestions or comments for me I would love some support. I live alone and, while depressed at times, I'm just more lonely and frustrated right now. I cherish the few hours a week I get right now when the pain drops below a 5. I'm hoping this community can provide some help and much needed support.

My sincere Thanks to all of you in advance.

Conor

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Join date : 2013-04-11

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Re: NEW chronic migraine diagnosis, help appreciated

Post  Conor on Thu Apr 11, 2013 3:38 pm

Forgot to mention, the neck and shoulder pain on my right side started to give me nerve pain up the side of my face and slightly down my right arm, which is when I was put on Valium and increased Percocet dosage.

Conor

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Join date : 2013-04-11

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Re: NEW chronic migraine diagnosis, help appreciated

Post  Conor on Thu Apr 11, 2013 3:41 pm

And was triggering migraines. Sorry for the disjointed message.

Conor

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Join date : 2013-04-11

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Re: NEW chronic migraine diagnosis, help appreciated

Post  Seaine on Thu Apr 11, 2013 7:54 pm

I would suggest that you cut out all artificial food colorings from your diet. They can be in a lot of foods you wouldn't suspect. It helped me a lot.

Don't forget to change your toothpaste to one without artificial colorings, too, like Tom's of Maine brand.

Apparently, the petroleum-based colorings increase blood flow to the brain somehow. My pain levels have been drasticially reduced since I cut out anything that said "color added" "artificial color" or "red #40" etc.
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Re: NEW chronic migraine diagnosis, help appreciated

Post  fxky on Sat Apr 13, 2013 11:47 am

Chronic migraines, 5-8 pain level daily, tons of meds, I feel you pain. I am like that too.

I am/have been in most if not all the medications you've taken/are taking and to be honest I can't give you a cure or a really helpful advice. But I can try.

I've noticed that strong oddors, perfumes, closed enviroments where the air gets nasty, and hot climates/rooms are a trigger. Food isn't a trigger for me, neither is alcohol or cigarrete smell. The gluten free diet is something I want to try, not sure if it works is just a theory based on study where people with celiac disease and bowel problems are more prone to getting migraines.

Magnesium will really help your mind, it easies the cloudy feeling when you try to think and on long term is amazing for memory.

In the upcoming weeks I'm getting a third round of Botox: The first one was AMAZING TWO MONTHS WITHOUT A SLIGHT MIGRAINE LIFE WAS PERFECT ACED ALL EXAMS, the first four days after botox were painfull. I got it done a wednesday, the next day nothing had changed, then I was crossing a street and suddenly felt my forehead numb, out of nowhere, it was freaky. By friday I was in extreme back/neck pain, the botox made my contracture go away but not whitout pain, saturday was the same, sunday I had a terrible headache(level 9-10), and monday morning I was a new pain free person.

Second round was sad, nothing changed, migraines continued, but my back felt so mucn better.

fxky

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Re: NEW chronic migraine diagnosis, help appreciated

Post  Platypus on Sun Apr 14, 2013 6:25 am

Keep working w/ that HA specialist to find a preventative regime that gets your pain down to a manageable level. If the Botox doesn't do it, you have many more options to try. Depakote would be your next best shot IMO. Then Pamelor, Neurontin and Verapamil.

Good luck,

-Platy
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Re: NEW chronic migraine diagnosis, help appreciated

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