Hi I'm new here - had migraines for 30 years

Hello there,

I am new and have dealt with migraines for most of my life. My two daughters also have migraines. My youngest daughter finally had an occipital nerve stimulator to lessen her migraines. I have had sub occipital nerve frozen and trigeminal nerve block.

We have tried every drug on the market - still rely on iv DHE, DHE im, nerve injections and steroids occasionally to bust a headache plus Effexor, Topamax, and Cambia (and some other stuff)

My youngest and I have POTS. I just found out I have EDS 3. .

One thing I found in my journey is to have your doctor test your homocysteine levels. My older daughter's is high and it may be the cause of her migraines. She is to start folgard.

Hi there! Welcome to the forum.

Thank-you. I look forward to reading different ideas/solutions.

trach, sorry you have to be here, and your family is also involved. huge bummer.

i don't believe you have posted since your first one on feb. 18. how are things going? have you read a lot of stories and gained some insights here? hope you will come back! dianne

I received more genetic testing from my doctor last week. On top of EDS hyper mobility, POTS, and migraines, I also have Factor V Leiden which is a genetic clotting disorder. I had clotting problems when I was pregnant so now I know the reason.

As for my migraines, I saw a new neurologist/pain specialist in Houston a few weeks ago. I am scheduled for nerve blocks on my sub occipital nerve and trigeminal nerve. I really wish I was well enough to travel to the doctor I saw before, Dr. Gabor Racz, at the International pain Clinic at Texas Tech in Lubbock Texas. Dr.Racz is amazing - when the Houston pain doc heard I had seen Dr. Racz, the new doc referred to Racz as "God" in the pain management field. So, if any of you can make it to West Texas - Racz is the man. He travels all over the world teaching. His fees are much more reasonable than charged in Dallas or Houston.

So hopefully, I will get a new brain back next week - ha ha!

Both my girls have had migraines this week. My oldest is going to college about 5 hours away. It is so hard to find new doctors - especially headache specialist. Luckily, Dr. Racz's office referred us some of their previous Fellows who now practice in the area and she can get nerve blocks. She refuses DHE iv. Which is frustrating because Dhe works well for her.

My other daughter needs another stimulator surgery - her battery ran out because she used it too much. Now she doesn't want to go through the surgery again. Aghrrrr.

I guess life is never easy.

Wow! Interesting story! Busy mama! Welcome!