Being helpless in the face of illness is like window shopping. You’re looking through the glass at all the possibilities for an effective treatment. Every time you start to walk through the door, thinking you’ve found what will provide relief, the metal grate slams down at your feet.
You can stick your fingers through the holes, but never far enough to touch what you need. Eventually there’s nothing left to reach for.
My choice to have a nerve stimulator implanted was made in desperation. I still believe that logic and reason were present, but having truly run out of options was a tremendous influence.
Desperation also allowed me to delude myself that the trial implant was effective — even though my husband and doctors didn’t think it was. It allowed me pay the outrageous cost of the surgery. And despair let me believe that the stimulator worked.
Now I know that even right after the implant, I didn’t really believe it worked. My sanity required me to think it did. For the eight weeks following the surgery, I was in hell. My last shot at relief didn’t appear to help. The rest of my life would be marred by excruciating pain. I had reached rock bottom and stayed there for nearly a year.
What got me out of bed was crediting the stimulator with making me more functional than before the surgery. Even with the doubt that crept in, earlier this year I trusted in the stimulator enough to tell you it relieved my pain. Now I know that it never helped at all.
As with many sorts of recovery, it took utter despair to accept my illness. I would do anything to spare you the agony of that year. But no matter what I say, your pain will drive you. Whether the treatment is meds, acupuncture or nerve stimulation is irrelevant.
I cringe when I’m asked my secret for being happy even with this misery. The answer is not wisdom that I can impart over coffee. You have to live it and will only know that you have when you’ve gotten to the other side.
What a discouraging post! Know that I’m one of the “special” few whose headaches are untreatable. Please don’t give up without exhausting your options. Once you think you’ve tried everything, ask about and research what other treatments or treatment combinations are available. You’ll be amazed by the possibilities.
If you’re thinking about getting a nerve stimulator, remember that I represent only one side of the story. While most of the people I know have similar experiences, people with good stories aren’t likely to seek out someone with a bad story. Do your research though. Whether the stimulator works for you or not, you’ll be grateful knowing it was a well-thought out choice.
Thanks for that article. I’m in the very same boat as you. Share your feelings entirely. I had a SCS for over a year that did not work at all and now they are suggesting an OBSTIM.Trial is actually scheduled for next week. I do disagree, however, that there are other modalities for relief at this stage having had fusion, radio frequency, cryo,acupuncture and sleeping on ice packs. Now I’m in even more doubt whether to go ahead with trial. had this pain for almost 40 years and for the past 6 years every day.
Thank you for your honesty. My husband suffers from chronic, daily migraines as a result of a 25 foot fall from a rooftop almost 4 years ago. We have a 2 year old son and have been married just 5 years. We are at the beginning of our life together, but this has taken quite a toll on us all, especially, of course, on him. He is scheduled for the ONS surgery within the month. We, too, feel we truly have tried everything (that we know of) and have now resorted to this. We don’t hold our breath for anything to work anymore. We only try it to try it and, if it brings any relief, consider it a bonus. I have confidence that my husband will get through this hell he lives in, but the day he does can’t come soon enough. ‘Time will tell’, they say. Thanks for letting me blog. I wish you health and happines. Meggan
I have had migraines since adolesence. They have “progressed” over the years to daily headaches now. Recently my Doctor described the pain that occurs with occipital neuralgia and pain that originates in the back of the neck, radiating up across the side of the head, ending in the eye socket. He described 90+% of my headaches. I have been looking on the internet at what is said and saw that the nerve stimulator was one potential treatment, but there were also nerve blocks and ice packs and physical therapy, etc.
Do you know what the best place for info on this type of headache is? I would like to do further research on treatments for this type of headache.
Thanks so much for your blog,
Roland
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Thanks for the kind words.
There seems to be a dearth of information on occipital neuralgia (neither the American Headache Society or National Headache Foundation, usually my favorite resources, have much). Here are some places to start:
http://imigraine.net/other/occipital.html
http://ww3.komotv.com/global/story.asp?s=1230136
Best of luck with your research.
K
I’ve found something that has cut my migraines down to 2 a week (instead of daily headaches): it’s a folk remedy. I put a pinch of cayenne pepper about the size of pencil lead into 1/2 ” of saline solution & put it in a nasal spray bottle. When I feel a headache coming I shake the bottle & spray into each nostril. Yes, it burns, but only for about 15 seconds. My sinuses drain & in most cases the headache goes away: I think it’s due to endorphin release. I took much less medicine last week (my first with this treatment) & I’m hoping the cayenne spray continues to fend off the worst of my migraines. Good luck !
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Wow, I’ve never heard of that. I’m so glad it helps you. I’m not sure I could bring myself to do it!
K
I so want to reiterate this part of the post:
“Please don’t give up without exhausting your options. Once you think you’ve tried everything, ask about and research what other treatments or treatment combinations are available. You’ll be amazed by the possibilities.”
There really are so many options, and even if you think you have tried “everything”, very few people really have. And we keep coming up with new stuff all the time.
Almost none of us are “curable”, but very, very few of us are truly untreatable. Keep looking–you never know when something will work.
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Thanks!
K
I have migraines coinciding with my menstrual cycles and ovulation and am on topamax, keppra, zoloft and prn imitrex and frova. For my history you can read: http://fairviewsue.blogspot.com/search/label/Health
I also have controlled epilepsy. I would really like to try sativa (a drug made from marijuana by a company in the UK) for them. A while back, I heard that sativa drug studies were being run here in the US, but now I can’t find out anything about them. Sometimes I wish I lived in CA and my doc could just write an Rx for it. Sigh. I agree with you that it is totally frustrating that the US gov’t is hung up about pot. Now I hear it is good for preventing Alzheimer’s too and my Dad had that.
I have this right eye tenderness that is everyday and my migraines range from 7 to 21 days per month. I am also extremely light sensitive. People say that they don’t know how I put up with it. I dislike when they say that and find it depressing. I avoid food triggers and that helps out a lot.
I wish you luck with your blog. I blog for sanity too and it does help.
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Thanks for the good wishes. I’m glad to hear you find blogging helpful — it’s terrific!
As far as I know, the only similar drug in the US is called Marinol. Clinicaltrials.gov recently had a study posted about using an inhalable form of the drug as a migraine abortive. It’s no longer on the site, so I assume that they have enough patients. I expect more in the near future.
Best of luck.
K