Keep Hoping

By deb987 Tuesday, January 08, 2008

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One fateful night, I go to about.com as I often did. I couldn't sleep, as was typical and I run into Teri. I typically am one of these lurkers. I don't say much on these sights but I read everything. Somehow the posts kept me going. But I really was getting to a point where I didn't want to live anymore or fight on. Teri talked to me and recommended yet another doctor. I appreciated the hope she gave me, but I wasn't going to another doctor. Well, my boyfriend stumbled upon the advice that Teri gave me. For 6 months we fought about it and I finally made the appt. with Dr. Sheftell. When I went, I instantly loved him. What he was asking was the impossible, but I loved him. I would first need to come off of the Excedrin migraine. I was causing my own problem. Let me tell you, that was MISERABLE. There are days in those weeks that I don't remember AT ALL. But you know, Dr. Sheftell would call (Yes, himself) every couple of days to check on me. He would talk my boyfriend through everything. My boyfriend was not a patient man and he really was an incredible advocate for me but a pain in the rear but somehow Dr. Sheftell dealt with it all. (They love each other today)

It was then onto new medications. We played around a lot with preventatives and abortives. We played with dosing and timing. We talked about food and exercise. We talked about my smoking. He asked a lot, but never, ever did he ask too much and never, ever did he give me a medication that was addictive. He can probably rattle off my family history to you better than I can.

Fast forward another 5 or so years. I just got back from Dr. Sheftell's office today. Yes, I still have migraines, but certainly not the frequency I used to have AT ALL. I no longer live in fear of migraines. They are not my life. That boyfriend? I married him in September. That job? I got 3 promotions. That doctor? He saved my life and I love him to pieces. And Teri? Well, she's right here and Dr. Sheftell talks about her at every visit. She's wonderful, isn't she?

Please, please, please, whatever you do, do not lose hope. If your doctor isn't doing what you need, change. Change 5 times, change 10 times, change 20 times... but be heard. Surround yourself by supportive people and if you can't fight, find an advocate. Stay on these types of sites and really learn from the experts. And do the hard things. Some of the things we need to do suck. Believe me, I am often not thrilled about going to bed at 10pm. on a Saturday night to keep a schedule, but you know what? I am less thrilled about getting a migraine. READ the new studies and have faith. This disease is getting more and more attention and is being researched. And if you lose your hope, come here, there is always someone to help you. Stay positive. I almost didn't go to Dr. Sheftell because I was losing my hope. Can you imagine? Anyway, good luck to you all. Peace be with you and bless you.

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Comments (5) | Add comment

jennyc

1/ 8/08 7:10pm

Hi Deb!

Thank you for taking the time to share your story! Big Smile I think everyone here needs a reminder that they MUST keep fighting!!

I'm so happy that you are doing well! What a difference the right doctor/patient relationship makes!!!

Heart jenny

Nancy Harris Bonk, Health Guide

1/ 8/08 8:20pm

Hello, and welcome to MyMigraineConnection.com!

Your SharePost is so inspiring, thank you for sharing it with us. It is wonderful when we finally find the right doctor who is willing to work with us.

Teri introduced me to Dr. Sheftell last June at a headache conference in Chicago. I could see what a caring and compassionate man he was right away. I'm so glad you are his patient.

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information on the main page of our site, MyMigraineConnection.com

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

Nancy Bonk
MyMigraineConnection.com Expert

PS: If you receive this message from more than one of us, please excuse the overlap. Thanks!

MaxJerz

1/ 9/08 1:57am

Deb, thank you so, so much for posting your story. I'm going through a difficult time with my migraines (now daily) and it is sometimes all I can do to keep going. It gives me so much hope that if you can do it, I can do it.

All my best to you!

Heart MJ

Laurelin

1/ 9/08 12:46pm

Hi.

Well, I just saw one of those geniouses today and was feeling really upset but this makes me feel better.

Thanks.

deb987

1/ 9/08 7:46pm

I wrote in hopes of helping someone out who might be down, but it amazes me that somehow I am the one who feels better because of the kind responses.

MJ - awwww honey, I'm sorry for your hard time. You have to keep going. I'm sure you've heard this a million times, but you shouldn't live the way you are, it isn't acceptable. You cannot accept this. Keep looking. Keep trying. Please. The loss of control is unbearable sometimes, I know. There were times I felt so sick that I would wish I was someone who just had a more serious disease so someone would just pay better attention to me and cure it. Then it would be over. Sick thinking like that, isn't it? Sometimes you feel like you are staring into an abyss. But see the thing is, you start with the fact that the way you're feeling isn't acceptable, you understand that there is always hope and there's help somewhere, and you keep looking until you find it. NO MATTER WHAT ANYONE SAYS TO YOU. Because you are worth it! I wish I could give you a big hug.

The geniuses are great aren't they? I swear I get a kick out of so many people. Some of them are really well-meaning, they are. I can't imagine too many of them actually wanting us to be sick. But so many of them assume what works for one, works for everyone. And if there were ever a group of people to prove that theory wrong, it's migraine sufferers. Besides the medications, oh boy, I've been down so many roads like so many of you. There was the ginger. It cures everyones nausea. I couldn't figure out then why when I took it, it almost always induced vomiting. Almost always. Well, sometime after that "cure" and after I got a lot healthier, I got into sushi. Along with sushi comes ginger. I ate a piece. It was gross. Really gross. And guess what? I got sick. You know why? I so detested the taste of it. It may be a lot of people's cure, it wasn't mine. Then yoga. Yoga would cure me completely because the only reason I had migraines was because I was crazy and I needed to relax. I know that there are plenty of people who can do it. But seriously the last time I put my leg behind my head was when I was 5. It did nothing more than frustrate the heck out of me and make me realize that my body was much older than I ever thought. Next, it was celiac disease. I was told that apparently a large portion of migraine sufferers have it. Given that I also had some skin problems (it's just really dry - not really a problem, an annoyance), it was likely I had that. Seriously, that test was a joy. Now I know why my cats are so ****** off when the vet pulls a stool sample. The test was negative. (Thank goodness! I'm kind of fond of wheat products and truly the disease does stink!) My own mother joined in. It was a hole in my heart. Both me and my sister absolutely had it. She read a study. Now I wasn't honestly going to tell a doctor that. They would have absolutely thought I flipped out. Plus I've had an EKG before, I think that they would have noticed something was amiss. Then it was onto accupuncture. That would absolutely cure me. I know people who had great success. I went 3 times a week. Ok, that lady was just plain crazy. Now, I know there are people who say that it doesn't hurt and maybe it's not supposed to, but every single time I walked out of there, I was bleeding! I wasn't cured, I was broke and I was bleeding everywhere. Now, this is not to say that these things don't work for a lot of people because they do, just not for everyone. And I have to tell you I laugh at when they don't work, because people are right there telling you you're crazy or not doing it right. It can't be that the cure is wrong, it's absolutely got to be your fault.

Hey, at least we try, right? You have to keep trying because there is still some really great advice with really great results from people who know quite a bit (way more than I!) I finally hit upon my relief. But sometimes, that road is rough and littered with geniuses. If something good has come out of all of this, it's that I am a MUCH MORE patient person now than I was 20 years ago. You guys are great! Have a fantastic night! Big Smile Deb

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