Non stop migraine for 11 months and counting...

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Non stop migraine for 11 months and counting...

Post  Melindy on Fri Feb 01, 2013 10:38 pm

Back story/ health history on me: I'm 30 and I had breast cancer at 25, which runs in my family. I've had ibs since around the same time, ditto on insomnia. I've gotten migraines since I was 2 but they were occasional ones I could handle.

Last February I went to charleston and 2 days after I can home I had an aura and my migraine has not left since. I've done the er thing, 3 neurologists, pain mgmt dr, chiropractor, acupuncturist, myofascial release therapy and physical therapy.

I've tried topamax, neurontin, Effexor, pristiq and zonegran. Along with Botox, infusion therapy and nerve block injections.

All with zero effect. Literally no relief. My pain level varies from a 6 to 9 with an average of 7 but never ever leaving.

So there's my story. I'm overwhelmingly desperate, my life is slowly sucking because of the pain. I'm currently going to Cleveland clinic for care.

Right now I'm starting to look at autoimmune diseases as a possibility. Everyone seems confused about what is going on with me. I'm so tired of the pain Sad reading other posts it looks like you guys can relate.

Opinions or advice on my situation?

Melindy

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Re: Non stop migraine for 11 months and counting...

Post  Jewishmother on Fri Feb 01, 2013 11:40 pm

Just a quick note before bed..........I have read that propofol has been used for intractable migraine pain. You might want to ask your doc if you can give it a try - at the very least you will get a little break from the pain while you are out.
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Re: Non stop migraine for 11 months and counting...

Post  amoobaa on Sat Feb 02, 2013 1:44 am

Hey, I'm so sorry you are going through this Sad
I hope you have some family or friends who give you a bit of support.
I cankind of relate with you in that I have been experiencing constant migraine at varying severity for almost 12 months now and also suffer from ibs. My severity ranges from what I call 3-8 but anything above a3 means I can't work watch tv etc. Hence living with parents again.
I also tried topomax and neurontin. And myofascial release.
Have u had scans? I hope you are healthy, although I'm completely clear and it didn't make it any easier, how can u treat something without a cause!
I really really feel for you. If you ever want to message me please do and wishing you the best of luck.
Xxx
Dee

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Re: Non stop migraine for 11 months and counting...

Post  Melindy on Sat Feb 02, 2013 6:47 am

thanks for the suggestion on the med, I will look into that!

I forgot to mention the scans- I started with scans due to the cancer. We did a CT and an MRI and everything looks fine. My oncologist checkup is Monday actually so I'll probably be getting a few more unrelated scans soon.

I have an amazing husband who has supported me no matter what, a mother super concerned about me and 2 super awesome friends who love me that live long distance from me. So yes I do have support thankfully! I work from home otherwise I would be totally screwed with that. We just bought a house right in the middle of this craziness and I worry about the day that I won't be able to work anymore because how will we pay our mortgage?

The nuerologists seem to be confused on the non stop pain. But give me nothing for the pain - Pristiq and zonegran are preventives. I do have some abortives that do nothing. Soo I have nothing for the non stop pain. It's so frustrating and the fact that it wasn't here one day and the next it was drives me insane Sad

Melindy

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Re: Non stop migraine for 11 months and counting...

Post  amoobaa on Sat Feb 02, 2013 6:57 am

Yehh tell me about it. I feel that frustration ever day! I never had migraines before so feels so misplaced in me.
If it's any relief a few friends of mine told me they suffered the same thing, constant migraine for about 6 months and eventually got better with occasional bouts. It does happen....

Doesn't help the current pain though. That's what I struggle with too. No one is inserted in that. Half tempted to take up valium...But Iknow how addictive it is...

I'm trying naproxan atm while Icome off topromax. Not really worked yet. Having agood doctor helps though. I'm glad you have asupportive network. I don't know how people cope without. Especially single mums.

I'm toying with the idea of herbal stuff for headaches and also for sleep add better sleep can help.

I'm also considering homeopathy and acupuncture..what else can we do but try.

Good luck darling, I feel for you xxx ths

amoobaa

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Re: Non stop migraine for 11 months and counting...

Post  Melindy on Mon Feb 04, 2013 10:44 am

I had my oncologist appt today and she did the bloodwork I was hoping for in regards to the autoimmune disease stuff.

She also ordered a spinal tap, wants to make sure there isn't any cancer in the spinal fluid causing anything weird in the brain due to my history of cancer.

Melindy

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Re: Non stop migraine for 11 months and counting...

Post  amoobaa on Mon Feb 04, 2013 10:50 am

Good luck with your tests, I hope it's nothing serious and you can find something that helps the migraines get under control. That's what I hope for us all xxx

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Re: Non stop migraine for 11 months and counting...

Post  Migrainegirl on Mon Feb 04, 2013 5:20 pm

Have you tried an elimination diet? That might be helpful to rule out potential factors.
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Re: Non stop migraine for 11 months and counting...

Post  Melindy on Fri Feb 15, 2013 11:22 am

soo, it's been a REALLY long week. The spinal tap did not go so well. 4 taps and zero fluid was gotten. They did it guided but still got nothing. It was painful and frustrating.

Woke up the next day with the most intense pain ever- I had the dreaded spinal tap headache. I went back in for a blood patch. Bed rest for 24 hours, got up Sat night, felt better for a day. Monday went to the ER with intense level 10 pain again. They did the standard migraine drugs at ER. I finally got down to a manageable level 6 and went home. Only to have it start again the next morning. It's been awful.

I finally feel better today- 8 days post spinal tap. Not great but better.

I've taken FMLA from work and am going to see about doing in patient treatment somewhere because I can't function like this. Right now I'm trying to figure out where to go, there are so many options. But I guess it will depend on where my insurance covers mainly.

Oh also, I am doing an eliminating dairy diet right now.

Melindy

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antigen

Post  thesickpelican on Mon Feb 18, 2013 11:32 pm

Get blood antigen from doctor who did not prescribe the steroids to you. Igg4 and ige

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Re: Non stop migraine for 11 months and counting...

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