Where do you go for help?

By Tracey Rains Wednesday, February 28, 2007

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I have been living with migraine for over 30 years now, and the best treatment I have had has only given me moderate relief. I still have some daily symptoms, whether is is a headache getting ready to begin, or my getting over one. I have been to every neurologist in my relatively small city (Knoxville, TN), and no one seems to be very concerned or have much knowledge. The latest medication I have been put on is Depakote. It has caused a 30 pound weight gain, and I am suffering from water retention to the extent that I am pitting as far up as my knees. Because I am overweight to start with, I do not feel that my doctor takes this that seriously. My husband conforms that I am eating less. (I feel so bloated from the water.) It is a 45 minute (at best) drive to the nearest ER (which I have to go to about once a month.)

I think about anyone would agree that my migraine is not sufficiently controlled. My quality of life is nil because I cannot plan anything because I never know when a migraine will strike. I am depressed, and this is also very wearing on my husband-- who is amazing at helping me.

My question is where do you get help when you live on the edge of nowhere? I have an appointment in 4 months to go to a headache clinic in Nachville, TN. Does anyone have any experience with headache clinics? Is it worth the drive, or will this just be another depressing trial in my search for relief?

The right doctor IS out there!

Comments (7) | Add comment

GretchenP

3/ 1/07 12:54pm

I took Depakote for a couple of years. It helped a bit with my chronic daily headaches and migraines, but, like you, I gained a lot of weight. Depakote also made me so dangerously depressed that I had to be hospitalized twice. I finally gave up on Depakote when it gave me a tremor.

A headache specialist is definitely what you need. General neurologists have to keep up with too many other diseases to keep up with migraine. A headache specialist has seen patients in similar conditions to yours.

Unpredictability is a biggie for me, too. When we accept invitations, it's always with the proviso that I may not be able to make it. I missed both office Christmas parties last year.

Gretchen

Tracey

3/ 1/07 5:29pm

This is the first time I have used a disscussion board, but I have gotten so desperate, I decided to try anything. Your answer is so helpful; now I'm looking forward to my specialist appointment.

Cindi

3/ 2/07 4:49pm

I will never forget the first day I saw a headache specialist! That dear doctor changed my life forever. Even tho there is no cure yet, no longer do I live in the kind of pain and misery that I once did. I hope you have the same result.

Teri Robert, Health Guide

3/ 3/07 12:37am

I found out from my own experience that a true specialist really is the answer, and we often have to travel to find one. When I finally found someone who could help me, it meant driving 8 hours each direction to get to his office, but it was worth it.

BTW, just a comment. This isn't a discussion board. This is a form of blogging.. a way for our members to write and share. We do actually have a discussion forum as well. Just look in the orange box that says "Manage" on the top, and click the "Migraine Forums" link.

Teri Robert, Health Guide

3/16/07 4:19pm

This isn't actually our discussion board. This is a section for our community members to express themselves, a sort of blogging.

If you'd like to check out the discussion board, look for the orange "Manage" box and click the Migraine Forums link.

Michelle

1/26/08 10:27am

Hi,

My name is Michelle and I live in Maryville, TN. I also have been suffering from migraines for nearly 10 years now. The past 2 months, I have had daily migraines. My new doctor has reccommend Depakote but I'm worried about the weight gain. I'm already overweight at 207 pounds and I'm 5'2'' tall. She told me that in her experience, the weight gain was minimal and the benefits far outweigh the consequences. I haven't decided what to do yet. I was taking Fioricet which helped when I felt a migraine coming on and also to take throughout the day to control my migraines, but it does nothing to prevent a migraine from coming on, which is my ultimate goal. How interesting that we live so close! Most of my doctors are in Knoxville as well. I'd love to hear back from you and hear about all of the drugs you have taken for your migraines, their side effects, and whether they had any benefit or not. Thanks for your time!

Michelle

Tracey Rains

1/26/08 12:51pm

Hi, Michelle,

Well, you sound like you're where I was before I went to Nashville to Dr. Brandes. I am more overweight than you. At the time my knoxville doctor first put me on Depakote, I had just lost some weight: I'd gone down from 275 to 254. Within a month of starting the Depakote, I was at 280, most of it water retention. Soon, I started taking a diuretic, which helped but did not completely get rid of the edema. Everyone said to watch what it did to my appetite, but I didn't find that to be a problem. With all of that said, I guess I'd try it anyway because the relief from pain was astounding. Before that I, too, was taking fioricet frequenly. This was causing medicaton overuse headaches. When I got on the Depakote, I was able to stop taking the fioricet long enough to break that cycle. (I had no idea that that was a problem until it was no longer a problem.)

Well, I am only just now begining to wean off Depakote and replace it with Zonegran. I can't remember, did I list my entire drug regieme? I'm taking several medications daily for prevention. Because I had suffered from daily migraine for over 10 years, Dr. Brandes says that we have to stop the pain chemically, electrically, and hormonally so that the pain pathways will atrophy. Once I have peen pain free for about a year, she plans to wean me off most of the medications. Since you have been suffeing for only (only!?) 2 months, your treatment plan should be more maneagable.

Who are you seeing locally? I'm impressed that you found someone who put you on Depakote so soon; it took 8 years for someone local (Knoxville) to try that with me. East Tennessee is a wastland of information about migraine. Many, (not all) of the doctgors seemed to want to help; they just didn't know how if Topamax didn't work.

I seriously can't recommend Dr. Brandes highly enough. Fir the first time in 10 years, I can come home from work and do something besides go to bed. I can actually make it through a day of work! She's also very willing to work with you about scheduling for out-of-town patients. I always make my appointments on Friday so that we can spend the night. It took about 5 months to get a new patient appointment, though. Feel free to email me directly if you want at ikiruw@bellsouth.net.

I hope this helps!

Tracey

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