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Occipital Neuralgia
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haunted213 posted:
I've had headaches and migraines since I was a child. My mom took me to the doctor several times and we were told everything from "it's just childhood aches and pains" to "if she wears glasses, she'll be fine". I did get an eye exam and was found to have a very minor vision problem (the doctor didn't think I'd benefit from glasses).

It was just recently, in my mid-20s, that I was diagnosed with occipital neuralgia by a Pain specialist. I now receive pain injections into my occipital nerves and radiofrequency treatments every six months or so to help deal with the pain.

Does anyone else have this condition? I found that using cold packs on the back of my neck, taking my pain medication (Tramadol), and a muscle relaxer (Xanaflex) really helps with the pain. There are those times when nothing helps, and those days/nights are the worst.
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need_a_break responded:
have had this pain in my head for one year, sometimes goes, seems to cycle.
my first neurologist was convinced i had migraines, i had a gut feeling it wasnt. was referred to another neurologist and was diagnosed with o.n. (was so happy it wasnt trigeminal)
i havent found much that works. i take savella - which really seems to help cut the intensity of the pain and i also take trileptal - which i dont think does much of anything except lower my sodium.
i also have fibromyalgia. i believe they are connected but am not certain.
my mood is affected before the pain starts. i will have severe angry, mean, agitated episodes for 1-3 days prior to the pain.
i want to be stronger than this is and not complain, but it beats me down. last week i had a horrible mood week, i would say close to violent fits. then the pain started saturday. sunday and monday were the worst days. it's wednesday and i am still hurting, but not as badly. i am worn out. it tires me out. using the muscles in my face (talking, eating, smiling, laughing) makes it worse.
the more i read about o.n. i wonder if it is what i have. injections havent helped me and i havent read about anyone else having the mood problem or blurry vision.
my doctor hasnt told me much about it, she is just trying to make the pain stop. my dentist (which going to the dentist is quite painful) is the one who told me it was something i would have to live with forever.
i know i am not too helpful, learning about it still.
 
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carpetcrawler5 replied to need_a_break's response:
Is O.N. Occipital Neuralgia? Where in your head is the pain?

SSRIs can cause migraines. I would look up all of your medications to check for side effects. It also may effect your mood.

I have heard fibromyalgia can cause headaches too, and depression. What were the injections?
 
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KritterMommy responded:
I too suffer from ON headaches. They usually transform into a migraine. I had the shots almost a year ago with pretty good results and just last week had them again. I have had RF done from C2 to 7 last year with good results on the right but muscle problems on the left. I asked the pair dr if there was anything else and he said no at this time. He did say that the insurance co will pay for 4 shots per year - you might want to ask yours. I use Zomig (for the migraine), Robaxin for the muscles and Vicodin 7 for the neck pain and of course, the ice and can sympathize with you and your problems. I would also suggest that you be referred to a Neurologist who can help with the headache pain as it seems that you need something in the Zomig family. I also take Inderal XL at night, for blood pressure and headaches.

I am having problems with headaches now after the shots last week - had to use my last resort of an Imitrex injection to slow it down this morning. It sure was wonderful right after the injection (until the lidocaine wore off) then it felt like a baseball bat had hit me. The Neuro wants me to take the Zomig at the start of a headache (I use 5 mg and break them in half, because the ins co will only give me 9 a month) and not to break them but take the full dose. I still break them in half and most of the time it will work to calm the pain and there are some months that I really run into the chance of running out, (like this time and the ins co decided to "red flag" the Rx last week, causing the dr to have to talk to the ins co before approval). I finally got them today!!!

I do hope that this will help. Take care !
 
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turkeyfeather responded:
I also have occipital neuralgia and occipital migraines. The only thing that truly helps me long term is a chiropractic adjustment!
 
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SunflowerStreet replied to turkeyfeather's response:
Did you have a nerve block? My daughter's neurologist thinks this is the culprit for my daughter's daily headaches. The only thing that helped her was Prednisone, and she could only be on that short term.

Did your chiropractic care eliminate the condition or just help you deal with it?
 
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itmatsb responded:
I was diagnosed with occipital migraines that were severe 24/7. Now before you read what has helped me, you have to understand that my migraines are extremely difficult to treat because they were caused by a stroke, so the treatments for you could be far less often and you may only need one of them.

I am being treated in a pain management clinic at one of the top university medical systems in the country. I get nerve block and trigger point injections every 4 weeks in my forehead, sides and back of head, neck, shoulders and back area. I get no steroids in these injections. I get more of them than any of their other patients and every 4 weeks, whereas some of the other patients only get them every 3 months. They have helped me enormously.

I didn't respond to any of the daily preventative migraine meds, so I responded very well to Botox injections which are most likely to help people who have not responded to these meds.

I wear Butrans patches which have kept me out of going to the ER about every 3 weeks and I can walk more than before.

I just started an off-label medication a couple months ago called Namenda which has helped me significantly.

I only use the abortive pain meds 2 or 3 times a week at the most because otherwise you risk rebound migraines. Many weeks I don't have to use any pain meds.

That's a far cry from the severe 24/7 migraines that I started with almost 5 years ago.

Any questions, post me back. I try to share what has helped me because migraine pain is terrible. I would greatly like to hear from anyone who is interested or who wants to try any of these.


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