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Post by crazycatlady on Jun 21, 2012 19:12:37 GMT -5
I take topiramate for my migraines (the brand name was topamax). I've taken it for years and my only real side effect is weight loss.
When I had to talk to my insurance company to pay the copay for the Mirena IUD that I'm going to try for endo pain management I discovered that topiramate is somewhat contraindicated for Mirena. My insurance required me to talk to one of their pharmacists (I had to order the device from the specialty pharmacy). He told me that the combination of topiramate and levonorgestrel can cause seizures. I explained to him that Mirena is my lowest side effect option. I can't take combo birth control pills because of my migraines and my other option is essentially variations of chemical menopause. He didn't know what to do with that information so he said ok.
Upon further research I discovered that the topiramate will cause a decrease of levonorgestrel in my bloodstream. So I'm wondering. Will Mirena be less effective for controlling my endo pain if there is less in my bloodstream? I can try stopping the topiramate if it will be an issue.
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Post by Karen on Jun 22, 2012 6:04:15 GMT -5
Hmm, I don't think that's one we can answer! Can you run it past your doctor?
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Post by crazycatlady on Jun 23, 2012 12:59:44 GMT -5
Oh, I definitely will ask my doctor. I was just holding out hope that someone on the site has or is taking topiramate and is using some form of hormonal birth control/endo treatment.
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Post by Karen on Jun 24, 2012 11:50:23 GMT -5
There may be someone with experience, but may be slim pickings...
Some of our members have reduced or eliminated migraines with diet changes. Something to consider (if you haven't already) in case you need/want to try going off the meds.
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Post by loveshoes on Jun 24, 2012 14:04:49 GMT -5
I wonder if Jenaya could chime in on this one - she was having monster headaches for years and when she gave up wheat/gluten they went away. There is a medical diagnosis for what it was....I'm sure she would know about the posted drug since maybe she was on it as well?
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Post by JC on Jun 24, 2012 20:15:47 GMT -5
HEY! I'm so sorry I'm late in responding to everyone. I was away for a few days. Unfortunately I never did take topamax. But I was like you, I had migraines for 22 years and nothing really helped. So I just dealt with them when I got them. Birth control made them SO MUCH WORSE. I did try the Mirena for a while and I will say, the Mirena IUD didn't really cause my migraines to be worse but the Mirena itself was absolute hell for me. I was in constant pain and I had really awful anxiety attacks and hot flashes. I ended up having it taken out because I couldn't tolerate it. To make a long story short, about a year ago my migraines go so severe that I was almost disabled. I got into the hands of the most fantastic neurologist I could ever ask for and after a long work-up he discovered that I had a gluten allergy. Apparently I have these antibodies against a protein in gluten that can also cause central nervous system damage. I started a thread about it. When I went gluten-free, my migraines disappeared! An added bonus that I didn't expect was that my endo disappeared too! I suffered with migraines for 22 years and this past May I hit my 1 year of being migraine free. This really made me a believer in diet changes treating disease. I hope my story helps. Here is the thread talking about my experience with the gluten blood tests and migraines: endo-resolved.proboards.com/index.cgi?board=related&action=display&thread=4897
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Post by crazycatlady on Jun 27, 2012 11:40:49 GMT -5
Thanks for your story Jenaya! I've been trying to avoid gluten. It's somewhat difficult since my family is Italian and I love pasta. But I've been avoiding it where I can.
My Rheumatologist put me on Cymbalta for osteoarthritis. It is also supposed to work for nerve pain. Some doctors are prescribing it for endo pain and migraines. So I'm hoping that it works for all three.
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Post by JC on Jun 27, 2012 12:24:25 GMT -5
I hope it helps you too! The thing with being on a gluten free diet is that it really is all-or-nothing. Cutting down gluten intake really doesn't do anything. It has to be completely gone in order to feel any positive side effects. I can imagine it's really hard being Italian! There are some really amazing gluten-free alternative pastas out there now and are definitely worth a try. Keep us updated on the Cymbalta! I hope it works out for you.
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Post by Karen on Jun 27, 2012 12:27:46 GMT -5
There are some really good corn/quinoa pastas out there that are gluten free! I've just been reading up on gluten and inflammation (and sugar, dairy, grains, etc.) and it's really awful on the body. I'd encourage you to give it up completely for a month, then try it again and see how you feel. Eliminating trigger foods that cause pain is a lot better on the body than taking drugs to stop the pain. You might not be at that point yet, but it's something to consider!
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