Vicki has tried numerous treatments with little success and is fighting the guilt feedback loop that so many chronics have. She’s considering having an occipital nerve block and would like to hear from others who have tried it — or other invasive procedures, like nerve stimulation.
This past couple of weeks have been really rough . . . kind of like a barroom brawl where, as soon as you stagger to your feet after getting knocked down, you get knocked down again!
I have been searching for answers for 17 years . . . the list of treatments and meds (both conventional and alternative) is huge. I continue to search for help; but when I can’t get much respite and spend the majority of my time in a dark room with ice packs and meditation, my spirits really sink. Right now I’m feeling pretty discouraged and can’t imagine how I can face a whole lifetime of this.
My doctor is now going to do an occipital nerve block in hopes that I will get some relief. I’ve tried to learn as much as possible about this, but haven’t had a lot of success. Does anyone know what the side affects are, and the risks/benefits of long-term, periodic treatment like this?
I try not to talk about the headaches; they bore me, so they must bore other people. The comments of others on this website are SO helpful. Another (minor) problem I have is a friend who I had to cancel a lunch date who is now irritated with me. I’ve thought several times about calling her, but realize I don’t have the energy to do it, and keep reminding myself that it’s HER issue, not really mine. I just can’t feel any more guilty. I have to fight it all the way.
Luckily, I have some very good, headache free days that reassure me that I’m
- not lazy
- not trying to be manipulative by being sick
- not trying to garner attention in a negative way
- etc.
I’m also very fortunate to have a supportive family. While I wish I’d get a little more help with stuff around the house, I also have to realize that they have their own, very full lives with lots of demands and they don’t exist just to keep my propped up. Sometimes it’s hard not to get too self-centered.
I will continue to watch this post, and any advice about nerve blocks or any other of the more invasive procedures will be welcomed. As well as any information about long-term effects of using triptans. (I use about 12-20 per month.)
You can read previous stories from readers at:
If you’d like to share your story with readers (or just with me), please e-mail me. Sharing what you’re going through help lighten your load and helps others with their struggles.
GON blocks have been recommended to me by my Neuro. Doc. But, UHC will not pay for them. They state that they are not a proven treatment. How have you gotten the injections covered by insurance?
I have used all the available triptans over the years, and find they work for a very short time. The side effects are severe for me. I’m not sure which is worse, the migraine, or drug side effects!
Lisa, have you tried to appeal the decision? Most companies reconsider if your doctor can cite studies that support the use of a particular treatment. Call the company to find out what the procedure for appeal is. Follow the procedure exactly (so they don’t deny it for some clerical issue) and have your doctor give as much support as possible. The appeals process is a pain, but is generally effective. I wish you the best of luck.
Take care,
Kerrie
Vicki, Shelley – I was in a car accident in 2002, my occipital nerve was permanantally damaged. I have had the nerve blocks, my neck fused and it still didn’t help my headaches. I have migraines 24/7 so the only thing that has worked for me is my Pain Management doctor burns the Occipital Nerve with a Radio Frequency Needle. I do get about 6 – 9 months relief from this procedure. I know it doesn’t sound like a long period of time for relief but if your in the same kind of pain that I am in, you’ll try anything! If you have any suggestions that you have for me, feel free to pass on. Also, I was wondering if they have some kind of support group for people like us who will be in pain for the rest of their life!
I too am suffer daily headaches. It’s been a long 10 years. I have had the nerve clock at 3 levels in my neck and radio frequency nerve ablations too. Unfortunately, I need more. I am schedule next Tuesday for the occipital block and then hopefully the nerve ablation. This will be my 5th visit for procedures since July. I no longer respond to any meds even pain meds. I have been happy with the results so far but wish for more pain relief. This new headache has not lifted for over 2 months now and I’m ready for some relief.
Hi –
I was going to the ER every week for my headaches when finally an ER doctor gave me an ocipital nerve block! Before that I was getting shots or IV’s of things like demerol, phenergan, & toridol every week. I didn’t respond to the headache meds like imatrex (sp?) or the others and the none of the pain killers really helped ease the pain. I now get ocipital nerve blocks every 6 weeks from a neurologist and they’re working great.
Thanks for the comments everyone.
The only suggestion I have for not looking like a junkie is exactly what you said — use the same doctor and the same pharmacy. If you bounce around, you’ll really look like a drug seeker!
Kerrie
Hi. Yes, I also take triptans with the same caution 2-3 headaches per week. When I get to my fifth and sixth headaches, I suffer with some and get a shot of demerol, phenergan, & toridol about once a month. I was addicted to opoids and so am really careful about going in that direction. Basically, I avoid them at all costs unless I have to get a shot/IV at the dr. or ER.
I use that many triptans every month also and am curious as to long term effects. It’s scary to me wondering what I’m doing to my body…BUT I hate being in pain! Along with the triptans I take Vicodin so…it gets tricky balancing all the drugs and keeping the pharmacy from thinking I’m a junkie. I only have the one neurologist and I use the same pharmacy – you’d think that would help – but I still see the looks and hear some of the comments. Really annoying but I don’t know what else to do, you know?
Julie, please be careful, very careful with the amount of triptan use. I, too used triptans, Imitrex injections at a high rate, of 2 a day for a prolonged period, per my former docs advice. I ended up with a severe allergic reaction AND tia’s. Please be very cautious. Sometimes the risks outweigh the benefits
Hi Vicki,
I don’t have any experience with occipital nerve blocks, but I do take about 18 – 20 triptans per month (18 zomig and 2 imitrex injections). I always need two doses of a triptan to get a migraine under control.
Because imitrex is only ten years old (the first one developed), there are no long term studies on its frequent use. I know there are people who take daily triptans as a last resort with no harmful effects so far.
I think the most important thing to be aware of with frequent triptan use is potential rebound (or medication overuse headache). The current recommendation from my headache specialist is to use triptans no more than 2 or 3 times per week.
Hope this helps.
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Thanks for the information, Julie.
Kerrie