I have had migraine with aura for over 45 years. I got worse with perimenopause - had to quit working. Only thing that broke the cycle was a hysterectomy (except my ovaries). Now, five years later, I'm going through menopause, and I"m back in a horrible cycle of having severe and disabling migraines every 3 or 4 days.
None of the triptans have worked on me for the last ten years. I've taken virtually every migraine and anti-depressant and epilepsy and anti-convulsant drug there is. Nothing works anymore. I'm currently taking 200 mg of Topamax and 200 mg of Zonegran and getting Botox in my head and neck and nothing seems to help.
I'm desperately trying to struggle through the last month of school and am applying for disability early retirement through the teacher's retirement system of Georgia.
The gynecologist says menopause will be with me for another 4 to 6 years, and the neurologist says he doesn't think my migraines will go away with menopause, as I'm in that odd 1/3 of migraineurs who get worse instead of better at menopause, though hopefully they will lessen in frequency and severity.
The only relief in sight is narcotics, but none of the doctors like for me to use them because I am developing such a high tolerance -- what alternative do I have? I did biofeedback twice, aromatherapy, visualization, meditation, deep breathing, stress reduction. acupressure, emotive therapy, art therapy, etc.
My quality of life is poor. I have a loving and supportive family, so I can't kill myself. My general practioners and my neurologist are the best there are, and I understand their conservative attitude about narcotics -- when I'm not in a great deal of pain, which I am more often than not. There was a time that if I threw up enough, the migraine would gradually go away. That is no longer true. Even being knocked out for several hours with strong painkillers sometimes just postpones the attack as I wake up to it.
My problem is not rebound or transformed migraine - my problem is overstimulated triggers that I can do nothing about and a body whose lifetime has been spent building up a tolerance for migraine drugs and narcotics. Is there any help for someone like me? I have short term and long term memory loss and difficulty focusing and concentrating because of the migraines and past and current medications, but I would be forever grateful for any help you could offer. Ryn
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Q: intractable migraine I'm on 400 mg daily of anti-convulsants but still have migraines every 3-4 days
Hi Ryn!
I'm sorry to hear that your migraines are getting more frequent. I know that is never fun. It's like two steps back.
You mention that you have a great neurologist....have you ever considered a Migraine Specialist?
How long have you been seeing your neuro? Even though you may love him/her to death....can they just be out of ideas???
There are over 100 preventive medications currently being used for migraine, I know you said you've tried a lot, but I'm sure there are some you haven't.
Also - there are seven triptans, as well as a new one getting ready to hit the market....have you tried all seven? If not, maybe trying a new one would be a good idea. Also, some come in different varieties, ie: Zomig nose spray or Imitrex injections. I tried three before I found one that worked best for me. So if you have not tried all of them, don't give up, one may still work for you!
Good luck!
I also suffer from migraines for the past 32 years. My son fell this year he now suffers from intractable migraines. We have him on B50 and 250 Magnesum vitamins and 900 mgNuerotin everyday, mostdays he does good. over the past 6 months he has done much better than when he was in the hospital and on Depakote. Me I am on 250 Topamax and can't remember my name and that has been for 3 years. They wanted my son on DHE which we didn't put him on we are glad we didn't, our son has been hospitalized in 2 states and thru and 5 doctors.
Please try www.mhni.com - Michigan Head Pain and Neurological Institute. Dr. Joel Saper is the director and he is a leading migraine researcher. I am a patient there and while I still have migraines, my doctor is wonderful and I now have more control over them and more pain management than ever before. I am fortunate to live close by but they treat people from all over the world and will work with your local doctors for management of your migraines, after an initial visit. There is hope!
There was a small study published in which people that were non -responders to triptans have had very low levels of RBC Magnesium levels.
There is a blood test you can have ordered, be sure it is RBC Mg.
I too suffer with daily migraines. My doctor had me on 200mg of Topamax and after 6 months, I was having severe breathing problems and my kidney was failing. They thought I had multiple miloma cancer because of my blood levels. I chose to get off the Topamax and all my bloodwork is settling down. I still have kidney problems, no cancer and suffer with the headaches. I take oxycodone instant relief now but I am getting use to it. I have been referred to a pain management doctor. The normal migraine medicines don't work.
Nothing worked on me either until I combined Topamax with Namenda -- a drug typically used for anti-dementia in Alzheimer's patients. After 1 year of taking this cocktail I am down to 2-3 migraines a month. Previously I had intractable migraines that were extremely difficult to break and often would just return within hours after they were broken.
I am 34 and have had hereditary migraines since I was 8. My oldest son also has the same type, ours are both considered intractible. The pattern within our family is for the migraines to become both more frequent and more painful as we get older.My neurologist has put me on meds. that are used as combination mood stabilizers and sleep agents and this seems to help greatly in preventing the frequency. Unfortunately, all that can get rid of them now, is to be knocked out with very strong narcotics for about 12 hours, and take the next 2 days after easy, or else the headache will return. when my son was recently in children's hospital, with a headache already as scary and complex as mine(at the age of 14), they actually enrolled him in an unexplained incephalitis study, due to the inflammation it caused, and the symptoms that went with it. My mother's migraines have become both tia's and one full-out stroke.
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Justin,
Hello and welcome!
It is EXTREMLY important NEVER to start supplements without talking with our doctors first. Supplements such as you listed may be "natural," but they ARE drugs, and they present their own potential side effects and dangers.
For example, feverfew should never be taken by a woman who is or could become pregnant because it can easily cause a miscarriage. This is an important point, especially given that the person who originally asked this question is a woman. Supplemental magnesium, if not properly balance with the right ammount of supplemental calcium, or it can cause big problems.
Let's remember not to give medical advice, but to make suggestions of things people can discuss with their doctors, please?
Welcome again,
Teri