Please Help.....i Have Tried Everything For My Migraines!!!
Originally asked by Community Member datuttle
Please Help…i Have Tried Everything For My Migraines!!!
I am a 36 year old woman who has suffered from migraines for nearly 20 years. I have literally tried every medication available, both preventative and at onset, without success, except for Botox because my insurance will not authorize it despite the long-term nature of this condition. I have had steroid injections, bilateral caudal nerve block injections both at the base of my skull and just above my eyes. I have tried OTC treatments such as CoQ 10, magnesium, zinc, feverfew, etc. with no success. I also attended a 30 day intensive pain management clinic focused on cognitive ways to cope with pain, but that was not helpful either. I have also tried chiropractic care, massage therapy, biofeedback and accupuncture to no avail. I have degenerative disc disease and have had fusions done at levels C5-6 and L4-S1 in the last 18 months; I have polycystic ovary syndrome; and I have had Celiac disease since 2004 (there is no change in frequency or duration of the migraines regardless of whether I am compliant with the gluten-free diet or not). The migraines have become more frequent and severe over the past 5 years; they used to occur approx. quarterly, now and for the last 3-4 years, they occur about 5 times per week. I am unable to maintain full time employment because of the frequency of migraines that are too debilitating to get out of bed/function in any way, and the inability to predict when and for how long a migraine may occur (at times they last for days at a time). I am currently taking Kadian 30mg BID with no rx for breakthrough pain so I find myself requiring a visit to the ER every 2-3 weeks for morphine or dilaudid shots. The issue of rebound or medication over-use headaches has been explored and dismissed. CT and MRI scans over the years have shown no problems or concerns, all clear. I have an appointment with a doctor who specializes in treating pain patients with long-term moderate to severe pain with the use narcotic pain medication. I have also seen several neurologists and migraine/headache specialists over the years but, again, nothing has been successful to this point. At my last appointment with the migraine specialist a couple of months ago, the doc basically threw his hands in the air and said there is nothing else I can do for you, nothing left to try, and referred me to the doc I will be seeing in a couple of days for narcotic treatment because he was unwilling to rx the narcotics HELP!! What is left?
Let’s start with the good news. The good news is that no matter how much we feel that we’ve tried every medication available, even if you’d tried a new preventive medication every three months for the entire 20 years you’ve had Migraines, it would be impossible for you to have tried every medication that’s being used to prevent Migraines these days. You may well have tried all the treatments your doctors have know about, but there are now over 100 in use, so there are still some you haven’t tried. You can find a listing of them in
I’ve been in the position of being flat in bed five or six days a week with debilitating Migraines, so I can definitely idenitify with your situation. Do you now what your triggers are? Through all of what you’ve said, I see no mention of triggers, and trigger identification and management should always be one of the first parts of managing Migraine disease, especially since some triggers can be avoidable.
The fact that I could identify my triggers only about half the time combined with preventives consistently failing turned out to be the clue that turned around my Migraine treatment. It pointed to a comorbid condition that was triggering about half of my Migraines. Once it was diagnosed and treated, we started making progress with managing my Migraines. The condition is idiopathic intracranial hypertension. The only truly definitive diagnostic test for it is a lumbar puncture, which I don’t see on your list of tests performed. You can read more about it in
Of course, nobody can speak for the doctor you just left, but many Migraine and headache specialists are reluctant or unwilling to prescribe narcotics/opioids for Migraine. It’s not that they don’t want to help us. It’s that they don’t want to make things worse for us, and research has shown that opioids do precisely that. Research has shown that use of opioids increases our risk of episodic Migraine transforming to chronic Migraine and, if our Migraines are already chronic, makes it more difficult to get them to revert to episodic. So, doctors are left right beside us in that space betweek the rock and the hard place. We need relief, but if they give us opioids, they could be making matters worse.
You ask what is left. At this point, the decision is really up to you. My recommendation would be to find another Migraine specialist and start back at square one with determining your triggers and go from there. Migraine is a disease that varies a great deal from one person to the next. For some people, it means a few easy-to-treat Migraines a year. For the rest of us, it’s far more complicated. It took over four years working with my Migraine specialist to get my Migraines reasonably well managed, but I have my life back. Becasue of some other health issues such as arthritis (and not taking extra pain medications because of the complications that would arise because of my Migraines), I never have a totally pain-free day, but I have many, many very functional days, and life is good.
I hope this helps,
Answered by: Teri Robert