Words of Encouragement Needed

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Fri, August 01, 2008

I started having really bad migraines/headaches about three years ago. My family doctor tried several different medications before referring me to a local neurologist. He put me on Topomax and Axert.

The Topomax helped cut down my headaches (and the pain) for a couple of months. When it started to not make a difference, he switched me to Gabapentin (generic brand) and tried the Imitrex shot. The Gabapentin worked for awhile, too, and then seemed to lose its effectiveness.

The Imitrex shot do anything but make me feel like I was having a heart attack. After CAT scans and MRIs, he referred me to a neurologist in Pittsburgh. He prescribed Migranal (a nasal spray) which did not help my headaches at all. At my last visit in June, he prescribed Treximet which got rid of my headache for four whole days!! (Talk about being on cloud 9!) However, when I took it the next time, it cut down the pain but did not get rid of the headache. Now, it doesn't help at all. He recently had me sample Maxalt-MLT which did nothing but give me an uset stomach.

For the last year, I have probably only been without a headache a total of 2 weeks. I am to the point that I do not know when one headache starts and the next one begins. I am getting really discouraged and feel that I will never have my "pain free" life back again. Any words of encouragement would be greatly appreciated.

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BRKyle

8/ 9/08 8:14pm

Sounds like you need to find another doctor. The fact that medications are losing effectiveness must be horrendous for you; I know I tried three or four medications before Topamax was found to be fairly effective for me. Please don't give up. I know this is very difficult, but you have to take control and get the care you need. Remember, YOU ARE THE CONSUMER, and YOU DESERVE GOOD, EFFECTIVE CARE. Don't take substandard answers. Ask your primary care doctor if they know other people to go to, and go to pain management folks if you need to.

I wish you luck -- my thoughts and prayers are with you. Learn to sling the lingo if you can, and don't let the b*****s grind you down -- or the migraines!

All the best,

Evelyn Wolke (BRKyle)

jst

8/10/08 6:41pm

Try to get to a Headache Center if at all possible! After frustrations with a local pediatric neurologist we pretty much forced a referral to a well respected medical center/teaching hospital close by. Didn't get much help or understanding there, either. My daughter is now being cared for by a Headache Wellness Center. At our first visit, the Dr. answered ALL the questions we'd been having for the past year (that other doctors couldn't answer or just ignored!). We didn't even have to ASK them!

The other commentor is right: YOU DESERVE BETTER! best of luck

irishinks

9/ 5/08 12:12am

I used to live on the East coast and so was able to visit two of the finest headache clinics in the country but now am in KS and not sure where to go anymore. My daughter is also now suffering with migraines and I am wondering where to take her? Any recommendations or do we just need to get on a plane to somewhere bigger and be done with it?

jst

9/14/08 2:10pm

I suppose you've already asked your East Coast docs if they know anyone in your region for you to see. The other thing that can't hurt is to ask friends, neighbors, etc.--- My experience has been that migraine sufferers are very willing to share information/experiences with each other. Hopefully as you meet people in KS you'll get some medical contacts to investigate. We did NOT find our Headache Center through another physician (!) --it was an aquaintance. (Even the large medical center neurologist suggested a Headache Center 1500 miles away --when the one we go to was within 50 miles !??!) Good luck.Be persistant.

Anonymous

9/21/08 12:11am

I think one of the keys to overcoming or living with migraines is 1. Find a good headache specialist. and 2. Be willing to try a medication or a combination of medications long enough to see if they help you, even if this means toughing it out , 2 weeks as a guideline. I've had migraines for 60 years. I have a really good doctor. I currently am on depacote 125 twice a day, baclofen 10 twice a day and a pinch of phnergan ( I quarter a 12.5) twice a day. I also take lithium at bedtime. I take imatrex when all else fails and if I have headaches everyday( I have cluster headaches) I've been known to take a percocet or two with a valium 5. I am thoroughly honest with my doctor and he with me and he has provided me with an arsenol to help me lead a normal life . I still work, babysit my grandchild and lead a fairly full life. I have probably tried every med for migraines you could name. Some worked for a while. Some for a long while, and when they no longer do the job for me my doctor and I find another drug or combo that works. It's a tough problem and takes so much time out of our lives,trying this med and that med and DR. appointments, but it's worth the effort to be able to lead a happy life. I pray for you all and hope I've been some help

Words of Encouragement Needed

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