3 years constant headache/migraine

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Date Joined Oct 2015
Total Posts : 14
   Posted 10/7/2015 3:15 PM (GMT -6)   
I just celebrated my 3 year anniversary with these nightmarish migraines. I was diagnosed back in Oct. 2012 with new daily persistent headaches and migraine. Since then, I have not had a break. I have had constant, every 24/7 migraines. I wake up with one and go to sleep with one. They range in intensity, depending on the weather and hormonal. Those are the only 2 triggers I have been able to distinguish with my migraines. I've tried almost every medication they have prescribed me (Topamax, Propranolol, Amitriptyline, Noritriptyline, Fiorecet, Imitrex, Butalbital, Maxalt, Sumatriptan (injections and pill), DHE inpatient, nerve blocks, Naproxen, Lisinopril, Prednisone, Rizatriptan, migranal nasal (sprays), Baclofen, blood pressure meds, anti-seizure meds, anti-depressants) I have tried acupuncture, physical therapy, chiropractor, hypnosis, massages to name a few. I have had numerous MRIs, ct scans, MRA, xrays, spinal tap, and hospitalizations.

I decided to take a few months off from meds to detox because of all the medications and treatments i have done. I have recently started up again on treatment to find out what may help. I followed up with my neuro at Johns Hopkins in Maryland. He prescribed an Alzheimers medication, Namenda. I have been on that for 2 weeks now, and am expected to be on it for 4 more weeks. If that doesn't work, they will try another pill on me to see if it works.

I have read a lot about the nerve decompression surgery. I think that may be my last hope. I am at my wits end and not sure what to do anymore in terms of treatment. I feel like i have exhausted all the opportunities out there for treatment and have very little options left. I still continue to have severe migraines on my left side, jaw pain, neck pain, back pain, sensitivity to light and sound, nausea, tingling in arms and legs.

Anyone have any treatments that they have tried that can help? thank you!

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Date Joined Dec 2008
Total Posts : 16712
   Posted 10/7/2015 9:55 PM (GMT -6)   
My OB prescribed me this pill called ponstel that really helped my migraines - unfortunately these days I can't take NSAIDS because of UC. Granted my migraines are pretty standard hormonal migraines. Since i stopped taking birth control pills with estrogen, I don't get them anymore. I will still get them if I get my period but I take a mini-pill and I skip the inactive pills. I actually didn't skip pills and got my period about two months ago, I thought I was done with the migraines. Boy was that a mistake!! I guess we all have these relapses once in a while where we think we are above the condition and we test. I had the WORST migraine all week. It was terrible. I won't be testing that again. I tried a lot of meds when I was getting them regularly, the only ones that did anything were ponstel (NASID), zomig (Spotty, helped sometimes and not others), and Pristiq. Did you try pristiq?

I don't know much about decompression surgery but I've seen people mention it here. You should start a post about it and see if you get some more response.

Another thing that helped me, that's probably silly, is a nightguard. I was clenching my teeth so hard all night, it gave me headaches.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. Step One J-pouch Surgery Complete!

New Member

Date Joined Oct 2015
Total Posts : 14
   Posted 10/8/2015 7:01 AM (GMT -6)   
Thank you for your response!

Unfortunately, I am not able to take any BC with any hormones in it since I had a Pulmonary Embolism when I was 20 years old due to birth control. I am on a non-hormonal IUD, but that doesn't do anything about my migraines.

I have not tried Pristiq, nor Ponstel. I have tried Zomig, I agree with the results. These may be good ones to consider.

I have considered a nightguard. I do notice that I have been clenching my jaw more because of the headaches, but the doctors just brush that off. I have really bad jaw and facial pain from it. I will definitely consider getting one.

Thank you!
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