I lived in Chattanooga for 10 years. Went to the same Neuro. Was on Imitrex shots that was prescribed to me. Carried in my purse. All was well. (25 mg topamax) Divorced and moved back to my home town. And got stuffed in a cardboard box for a doctor to poke me like a rat. He just threw me on 400 milligrams of Topax. I was having to go to the urgent care regularly with migraines and get shots. So he decided this was the best thing to do. (This was a doctor recommended by my aunt). So I finally decided that I had enough with this doctor. I would go in for a check up (not even with a migraine and he would put me on oxygen and turn off the lights and come back in and ask me how my migraine was! (I thought well fine until I came here!) So I swapped docs. This doc sent me to a neuro. He decided I didn't need the 400 mg of topamax and told me to quit COLD TURKEY! 400 MILLIGRAMS! Been on it for about 3 years! I thought I would DIE! Do not ever quit cold turkey! Unless you wanna know what a drug addict feels like! So now after getting migraines again and throwing up everyday over the garbage at work my new doctor that will not prescribe medication that wants me to come to the office for a shot puts me back on the 400 milligrams a day! So I am looking forward to the feeling of being dumber than a box of rocks syndrome once again. My job will not just let me leave everytime I have a migraine since I would miss work 4 days out of a 5 day week!So I finally told my doctors nurse look yall (yes I am from Ga) will have to call me something in I cannot drive to your office every time I have a migraine. I would rather pay for a medication than $40.00 for a office visit. So they called me in Sprix. And of course its not covered by my insurance. And of course the pharmacy doesn't have it in stock or any other pharmacy in this town. I am so disgusted. I am 32 years old. And have had migraines since I was about 9. I have a ruptured disc from a abusive ex-husband and 5 bulging. And am going to have to have a fusion in my back. This doctor also put me on a high blood pressure medication and everytime I eat or drink it makes me have a funny feeling like I am running high sugar. I don't have problem with high sugar or blood pressure. Any advice??

Welcome,

Look on the internet for good doctors in your area, then when you find one tell em about the competition going on between your 2 current Doctors.

Most doctors tend to wanna try the polar oppisite of what another doctor will perscribe, so you may find a doc that may break the cycle of old and try some current ahead of the curve treatment, that sooner or later may work. Most of all just stay cool.. Getting worked up dont help the head. I do feel for you.

Coach Bill

I've read your message 3x or so and can't find any reference to your having Cluster headache. If migraine is the primary issue, we can't help you.

IF you have Cluster, then the latest treatment (Sprix) is not appropriate--its a pain medication. IF the current doc has diagnosed you with Cluster AND he is treating with pain med--you have a doc who doesn't know how to treat CLUSTER.

So, given the inability to gain relief with the doc, suggest you seek a headache specialist--regardless of the type of headache, you're likely get the best treatment from someone with his training/experience.
---
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Hey GP,

The next time you see a physician for any reason, ask for the lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D.  That's the serum level metabolite of vitamin D3.  You are likely vitamin D3 deficient.

So far all the CH'ers who have gone in for this test with active CH were deficient in vitamin D3 with some 25(OH)D results coming back as high as 42 ng/mL. 

CH'ers who went on the anti-inflammatory regimen with vitamin D3 at 10,000 IU/day and responded to this regimen with a significant reduction in the frequency and severity of their CH or went pain free then had this test, all had their results for 25(OH)D come back at or above 60 ng/mL.   Think about it...

Take care,

V/R, Batch

Bob and Batch just gave you two long and involved posts. PLEASE tale the time to read BOTH.

I get the impression from your posts you may suffer from a combination of migrain and CH. This would explain some of the treatments you've mentioned, specifically the oxygen and the blood pressure medicine, my guess is that was Verapamil? If this is the case, a headache specialist neurologist becomes critical. GP's and even your garden variety neuros are not going to have the experience or knowledge base to effectively treat a complex diagnosis like that. Use the info in Bob's post to locate a specialist. CH is a lifetime disorder, so the sooner you can get to a specialist, and stop getting slapped around by well intentioned, uninformed GP's, the better. ;)

That brings us to Batch's post. I know after all the complex meds that have been thrown your way, a simple vitamin/anti inflammatory regimen sounds like attacking a NASA Rocket problem with an old slide rule. The fact is this regimen is working wonders for way too many people, for it to be coincidence. For the full info on this go down in this section to the post "123 pain free days and I think I know why."

Hang in there, headache pain sucks and can really disrupt your life. Glad you found us, hope we can help you.

Joe

You've already recieved some good advice, but I too am wondering if you have Cluster headaches since it was never mentioned in your post.

I believe way too many people are being MISDIAGNOSED as having clusters when they really don't ... just because the doctors themselves are poorly informed.

Find a headache specialist, try to get a positive diagnosis, and if you do have clusters, try to get meds that might actually help clusters.

PS> I've never heard of anyone taking such a high dose of Topomax. I was on it for almost a year (With aweful side effects and zombie like reactions) ... and my highest dose was 200 mg's a day.

Goodluck and I Hope you're able to stop and prevent your pain.

*Modified for mis-spelled words. I type faster than my brain works I guess. A big ol' OOPS !