Occipital Neuralgia Online Support Group

24 year old female diagnosed with ON July 3rd after having a "migraine" for 7 years, the past 9 months of which were every single day.

Just received my first two nerve block injections on Wednesday and now I have a sinus infection...so I'm not too sure if my headache is from ON or if it's just a sinus headache. Only time shall tell, I suppose.

I just want the damn thing to go away. Feeling a little down.

I've also noticed that a lot of ON patients are on narcotic pain relievers. My doctor would only give me muscle relaxers. I feel jipped.

Welcome! I am new to this group as well. I'm sorry for your pain, but I am glad that you finally got a diagnosis. I'm in the same boat and although ON isn't exactly an easy road, it is nice to put a name to the monster.

I don't know how people make it without the narcotic pain relievers. Nothing else works for me, and I am in excruciating pain 24-7. I don't like the way they make me feel like a zombie, but after being in so much pain for so long, I just can't take it anymore. I have a feeling that I have had ON since I was in a traumatic accident when I was 8, and I am 31 now. Ibuprofen and Tylenol only work for so long when you are popping them like candy for a few decades. The last three years the pain has been constant due to a herniated disc in my neck that I thought was a migraine the whole time. I would look for a second opinion or get a Pain Specialist if they think that a muscle relaxer is enough pain relief. If it isn't working for you, you need to tell them. Just be completely honest with them about everything, and get a second opinion if they are not sympathetic. Nerve pain is horrifying!

I had my first nerve block this week too, on Tuesday. I only had two hours where there was no pain at all, then went back to 9s and 10s. Man that 2 hours was blissful though! But I think he missed my main nerve so I guess I will have to try it again when they let me.

Best of luck to you!

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I've also noticed that a lot of ON patients are on narcotic pain relievers. My doctor would only give me muscle relaxers. I feel jipped.

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I suggest that you stay away from the narcotics for as long as you can... and hopefully you never have to take them. They *seem* to be the greatest thing ever at first, but then you get physically addicted to them. The bad thing is that you don't even know it until you go without them for a day.

It's a slippery slope, and it's NOT fun.

ON - I found out the hard way last summer after neck surgery. I'd been on Lortab for almost a year and 3 weeks after my surgery I felt like I didn't need them any more so I stopped taking them. 24 hours later I was sicker than a dog! I found a great plan for weaning myself off of them and 2 weeks later I was off them. Imagine how unhappy I was when I had to start taking them again 6 weeks later! Luckily, after my ON decompression surgery this past March I was able to taper off and did fine after my last one.

JGood, I too, agree with RAH, stay away from the narcotics as long as you can! I've had this problem for three years. Been doing nerve blocks which have helped a lot, these last 6 months have been more painful. I've used the narcotics(since the beginning), Lortab along with muscle relaxers. I have now come to realize that the reason my headaches are more frequent is that I could be having rebound headaches. I stopped taking them last week, went 1 week without them and then woke up with nausea, low grade fever and achy body, don't know if this was from the Lortab and withdrawals or not. I have since had 2 bad headaches where I had to take something; however, I'm really hoping that I notice a pattern here. RAH, can you explain what you experienced when going off Lortab and how you weaned yourself off of them? JGood, I too have sinus issues and ON can mimic the sinus pain. It's that horrible pressure in your face and your head, I know the feeling. Wishing you well.

Melanie

MelRose - here's a link to the plan I found online last summer. http://www.positive-way.com/recovery/drug_withdrawal.htm I emailed the guy a note thanking him for posting theplan online and he put that at the bottom of his page. I was on 10/350 every 4ish hours. The first day I started I made myself go 5 hours in between and lengthened the time in between each pill by one hour each day. When I was down to 1 every 8 hours I cut the pill in half but took a half every 4 hours the 1st day and then increased by an hour each day again. Then I repeated the process with 1/4 of a pill. It took me just about 2 weeks and worked well. I was not happy to have to go back on them about 6 weeks later due to ON, but luckily after I had decompression surgery this past March I was able to taper off much smoother and quicker.

I just really don't want to be in pain anymore. The muscle relaxers haven't been enough and it's been a week since my first nerve block and still no relief. I definitely do not want to be addicted to narcotic pain killers. Most of the time, I can get through the day. But sometimes it seems to "act up" and it would be nice to just have relief. Like a limited amount of narcotic pain killers or something. "Here's 10 pills, but you only get 10 a month, so choose your days wisely" sort of thing.

Like a lot of other people I have stayed away from any narcotic at all costs and i try to grit through the pain. On my bad days I take Maxalt MLT and that gives me the relief that I need. Maxalt is expensive, (much cheaper from Canada) but it does work. I only take it when i really need it.

Be careful with nerve blocks. I have had 4 of them, they lasted me for a while but then worn off, each one lasted only half as long as the last one. My neuro refuses to give me any more because the medication was eating into my skull. I now have dents in my head from nerve blocks. I am on the list for decompression surgery, hopefully i can get that done and it will be the answer.