New Member Introduction

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New Member Introduction

Post  ducecoopmyton on Sun Mar 31, 2013 10:52 pm

Hello everyone, I'm Kathleen. I have suffered migraines for nearly all my life. I have had sinus surgery, neck nerve surgery, jaw surgery and two heart PFO closures to try to "fix" the migraines; all to no avail. Each time I summon up the courage to try this one last thing... and I am a good patient but after discovering Relpax five or six years ago while I was on Interferon for HEP-C, I thought I'd found the miracle of all miracles. I took it every day for about two or three years. Not a whole pill, I cut the 40s down to 20s and eventually could make it 24 hours until I had to have another half of the Relpax. Only a few breakthroughs but at some point I had a knowing that taking Relpax daily (when it hasn't even been tested in humans for more than 6 pills a month...) could be dangerous and I just wanted to see what would happen if I went off. Within 9 hours beyond the normal 24 hour window I had before the migraine would set in - I ended up in the Emergency Room with what I can only describe as the most horrific pain and vomiting non-stop for days migraine I had ever had. They kept me for two days and I was terrified about what had happened to me. Still, I left the hospital thinking that it was an isolated incident due to going off Relpax. Wrong. Within a few days I awoke at 4 a.m. projectile vomiting in my sleep! And pain that truly made every other migraine I'd ever had look pale in comparison. Then I became really really scared. Back to ER and thus began a cycle that lasted for three years. I threw up my stomach lining many times and the only thing that could kill the migraine was Demerol injections and Phenergan. I have a very high profile job - well as you all know you can't go to work vomiting and practically blind from the visual disturbances and audio sensitivity...blah blah blah...you know the drill. Fortunately I am able to "work" from home. Eventually I had to learn to give myself injections of Demerol and Phenergan.

I stopped travelling. I was too afraid to get out on the road and have one hit. It has been hell. Now, five or so years later and a neck nerve surgery (supposed to be a miracle for most migrainuers, but not me unfortunately and $15,000 out of pocket because neither my work insurance nor Medicare (which I've had to remain on disability) would cover it. My 90 year old Dad gave me my inheritance early . Well, you know the drill. It didn't work. I'm highly sensitive to almost every "miracle" drug that come along. I don't even know why I'm writing this but I have to get it out.

Last year a friend of mine stopped me in the grocery store and said her daughter had a hole in her heart and when they repaired the hole her migraines went away. Long story short it didn't help. Time has helped. The Relpax took years to get out of my system. I only take 1/2 a pill now if I absolutely have to be somewhere and need to have my mind with me. NEVER more than two days in a row and now I noticed the other day that it didn't work very well. So...my last ditch is down the river so to speak.

I'm on Fentanyl patches ( a very low dose) to prevent the daily persistent headache I've had forever and that are the trigger for the "mega migraines" I have at least every four days. The good news is that I haven't vomited for about six months and that makes my stomach better but Topamax and all the Topamax type drugs causes extreme stomach cramps and gas (I mean gas that I've never even thought could persist as long...but it does. I'd cry but laughter sometimes is the best medicine, so I sort of laugh. I have no shame for my condition anymore and nothing surprises me about how and when they occur. The few people left in my life know me and know it's what I'm left with. Because of my liver condition (HEP-C related) I can't take many drugs others seem to be have helping them. So, I wait. Two years ago my neurologist in SLC said that if I could just hang on for a few years there were drugs coming down the pike. At the time I was screaming inside saying, "Oh, hell no you just didn't say to hang on for two years, did you?" Well somehow I did wait; fighting the depression and suicidal thoughts that occur to us all during migraine attacks. I waited for two years and went back last month and she stammered and said, I know I told you that there were drugs coming along but they haven't arrived yet. She made an appointment for me for two years down the road. End of story. I will try to catch up and maybe somewhere on here I'll find a clue that could offer me some relief and I'll try to be of assistance with what experience I've had in my life concerning this terrible disease. farao






ducecoopmyton

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Join date : 2013-03-31

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Re: New Member Introduction

Post  Seaine on Sun Mar 31, 2013 11:10 pm

Hi and welcome.

I do not understand why you did not go back to the Relpax, after finding out that the migraines didn't get better. Sure, it may be harmful longterm - but don't you think being in that much pain and vomiting so much is harmful to your longterm health?

You mentioned the Relpax didn't work quite as well recently. Have you tried the other triptans such as Imitrex or Frova?

I take an Imitrex everyday (just recently went down to 1/2 of one everyday) and I've taken Frova nearly everyday for 10 years or so.

For me, the only miracle migraine drugs are the triptans. They have very few side effects compared to such things as Topamax and my life would be hell without them. I would not be able to hold a job or have many friends and would probably have trouble taking care of myself. Even if taking them longterm might impact my health, I feel it would impact my health FAR worse to not take them.
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Seaine

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Re: New Member Introduction

Post  dcook60 on Mon Apr 01, 2013 9:01 am

you are welcome here, kathleen. this is a great sharing group. you are talking with another person who takes daily triptans. for 14 years now, this has been my life, and believe me, i wouldn't have a life if not for these wonder drugs. (yes, we all realize they are dangerous for some and don't work at all for others).

the two (of seven) which work for me are maxalt and amerge. i take these on alternate days. on the rare days that i get enough sleep, once in a while i can go one day without one. my body forgot how to sleep 25 years ago, and i've had every sleep study in the world, without much useful info being gained.

i've had zero side effects from any triptan i started imitrex when it first came on the market 20 years ago, but not more than 2-3 times per week then, as that's all i needed. doctors are really good at scaring migraine patients about the dangers of triptans more than twice/week. have your heart checked out to make sure, and i say, as seaine did, above, take what works.

ALL DRUGS work less well, the longer you take them, but my experience with the two triptans taken now is that this horror hasn't happened yet. life is short so i hope you can enjoy yours more than you have been. dianne (73 and working 30 hours/week)

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dcook60

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Re: New Member Introduction

Post  Migrainegirl on Tue Apr 02, 2013 5:17 pm

Hi Kathleen,

So sorry to hear about your awful experience. I am trying all natural supplements which are working much better for me than all the "wonder drugs" ever did. You might want to try it if you have not.
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Migrainegirl

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