Frustrated with Migraines/Ready for drastic measures Any opinions...?
I've had migraines since I was 17 (1991). Back then they didn't have the triptans so when Imitrex first came out (in pill form) I thought it was a miracle drug. At some point in my college days the pills just weren't cutting it. I would take a whole pack of 9 of them in two days (which adds up $ fast!), so they put me on the injections. Again, I thought it was a miracle. Well now, even those don't seem to work all the time anymore. I'm not sure when it started, but it used to be just an intense stabbing pain behind my eye but then came the same at the back/base of my skull. Sometimes the injections will get rid of the eye pain but not the pain in the back and it's just like I'd rather die while it's happening.
So, a little more about me: I'm a stubborn stubborn person. Never went to a specialist. Never had the MRI or the CT scan. Heck, I dont even have a real primary care physician, I just go to the walk in clinics or a family nurse practioner. But I'm ready now. I've tried other triptans/preventatives etc etc and only the injections worked so it scares me to death that they might stop working at all. So I've read about the botox injections helping people for two or three months at time. Anyone tried them? Are they crazy expensive (which more than $250-400 a month I'm paying now)?
Also, I've read about something called 'occipital neuralgia' which sounds a lot like this thing I have going on in the back of my head. It's an extremly piercing but very precise pain. I read that they can do a surgery to actually disect the occipital nerve. Anyone tried it
Not that one specifically. But I've been taking multivitamins, magnesium, butter bur, fever few, vitamin B-something and B-something else
none of it really helps, they just keep getting worse, though for some reason I get a break in the summers, like June to Aug I'll go a whole month or two without one, but the rest of the year they just seem to get worse and worse as the years go by
I recently started going to a headache center and the doctor first of all had me keep track of my headaches. I had 11 migraines last month. She told me to take 100 mgs of Riboflavin (B2) and 250 mg's twice daily of Magnesium totalling 500 mg's. She said that they also sometimes recommend Butterbur if I wanted to go the natural route. You have to be careful about the brand though, some contain toxins. She also told me not to exceed my triptan by more than twice weekly or I could get rebound and that to make it more effective I could take Alleve or Naproxin at the same time. She said not to take Motrin at all anymore, that it could easily cause rebounds. I am now on a preventative 40 mg's of Propranolol daily but if that does not work she wants to put me on Topamax which she says they have very good results with. She also assured me that 95% of their patients are helped at their center. I am keeping my fingers crossed. It's been two weeks with no migraines! :) As far as the Botox, my neighbor does this and it absolutely helps, but she gets cluster headaches. My doctor said that they sometimes inject it in the shoulder muscles as well. I got the impression it is a last resort kind of thing because it is expensive. Hope this helps. I can't urge you enough to see a headache specialist.
Two years ago I was finally diagnosed with cervical neuralgia which is only slightly better than the "variant migraine/freak of nature" diagnosis that I'd been labled with for the previous 20 years (6 neruos, 10-12 chiros & upteen different specialists. I've lost count of the drugs). I'm now 40 (male) and things have degraded to he point that "the baseball bat to the back of the head" request really isn't that much of a joke anymore. If you're reading this forum I'm sure you can empathsize.
In December I was finally reffered to a pain specialist (anyone know who Count Roogan is? Princess Bride) and was put on Kadian (morphine). It worked for one day. Two weeks ago I had my first nerve block to the greater and lesser occipital nerves. I was in heaven for 6 days. I can't remember when I have beed pain free for so long. It wore off on day 7 and I spent all day in bed. Day 8 I went back in for another block and he only did the greater occipital nerve. It hasn't helped much. While the "hot poker from the back of the head and through the right eye" is not there, constant pain in back and right eye still exist.
So to get to a point here and larah's question...has anyone any experience with nerve surgery or microdecompression? What about a Spinal Cord Stimulation Implant?
The only thing I have ever heard, and the first notion of that type of surgery, came from an old nurse that was preping me for a dilantin/valium IV during a bad episode where the pain and spasms/tremors hadn't stopped for 2 weeks. This lady walked in, looked at me and said, "Hmm. Neck injury?" Over 20 years of doctors and this lady pegs it instantly. Turns out, she had had the same thing thing until she had the nerves severed. She said that she hasn't missed them and life has been normal ever since. I can't remember how many years it had been for her. She had gone to a pain management center in San Francisco to have it done. That's all I know.
I have been dealing with occipital neuralgia (ON) since 1978, which is way before anyone was using the term 'occipital neuralgia'. The pain is quite different from that of migraine headache. Like most neuropathic pain, the pain of ON is usually described as sharp, stabbing, piercing, or slicing, often accompanied by feelings of electrical shock. Unlike migraine pain, occipital neuralgia pain is rarely described as pulsing or throbbing.
It is certainly possible to suffer from both conditions. I urge anyone who experiences the symptoms of occipital neuralgia to visit a neurologist and/or pain specialist, and REFUSE to be classified as a headache sufferer if the migraine medications don't help (which is almost certain if the pain is neuropathic). Don't give up; newer medications (such as cymbalta, lyrica, and keppra) are providing relief for many neuralgia sufferers who have never obtained significant relief from off-label use of older antidepressants or anti-seizure drugs.
I did have nerve decompression surgery in April 2012. Unfortunately, I am the one out of ten patients it has not helped. Maybe you would be one of the lucky ones. Call Dr. Robert Hagen's office at 314.434.7784 and set up a consultation. Botox injections did not work for me and I'm about to the point that Imitrex injections do not work well either. I generally have a migraine for weeks before I get any relief. Before the surgery I also had tried IV migraine therapy which consists of a cocktail of drugs delivered through a vein (can take up to 2 hours). I take 90 mg of Cymbalta as a preventative and 800 mg of magnesium per day. Good luck to you!
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