Occipital Neuralgia

[salamandertom]

Has anyone ever had this? I have this and it was getting better, but now it is getting worse again? They have increased my baclofen at night and added ativan/lorazapam in three times a day to try and calm my muscles down - seemed to help at first - but now it is just starting to get really bad again. I read steroids can help, but I just took some about 10 weeks ago.

[Redwings]

I read steroids can help, but I just took some about 10 weeks ago.

Did you mean to say that you had IV steroids 10 days ago? Other options are a local steroid injection or a combination of anesthetic and steroid for an occipital nerve block. Cases of true occipital neuralgia can respond very quickly to a nerve block. What did your doctors tell you?

[Shashi]

I've had occipital neuralgia for about twenty years, ever since I was in an auto accident and had whiplash. Mine doesn't flare up that often and seems to be decreasing as time goes by, but when it first started, it was horrible. I'd have it occur several times a week. (Now, it's probably ever five or six months or so.) It's extremely painful. I've had times I felt like just sawing my head off with a dull butter knife to relieve the pain! It feels like an ice pick being jabbed repeatedly into the back of my skull. Awful!

The only thing that ever worked for the pain is an over-the-counter medication called Percogesic. It worked great and would usually relieve the pain within 30 minutes, though it did make me sleepy. Unfortunately, they recently changed the ingredients and now it doesn't work nearly as well.

I hope you get some relief soon. You have my sympathies!

Hugs,

Lisa

[salamandertom]

Did you mean to say that you had IV steroids 10 days ago? Other options are a local steroid injection or a combination of anesthetic and steroid for an occipital nerve block. Cases of true occipital neuralgia can respond very quickly to a nerve block. What did your doctors tell you?

LOL. Yes, that is exactly what I meant - 10 days ago. I haven't been able to speak to my actual neuro. I am getting very frustrated about this as the pain is super INTENSE. I really don't know what to do. Their phone message was to up my nighttime dose of baclofen to 20 instead of just 10 mg.

One of my professors is a physician, and his wife has addison's disease. When I described the pain - he asked if he could feel and said he was sure it was this and his wife had it often. I looked it up today and I am sure this is it. I wish I could see my neuro so I could be diagnosed and properly treated.

[Redwings]

LOL. Yes, that is exactly what I meant - 10 days ago.

With the amount of pain you're in, it probably seems like 10 weeks!

I wish I could see my neuro so I could be diagnosed and properly treated.

Me too. Whatever happens, I hope you get some relief soon.

[GEM]

Can you call back and request an appointment ASAP? It doesn't sound like increasing Baclofen 10mg is going to help this any.

[Redwings]

Sasha, I'm with GEM on this one. When I said "whatever happens," I was hoping that included you calling your neuro's office bright and early Monday morning and politely but firmly pushing for an appointment ASAP.

It looks like you're back in the old pattern you've had of too many doctors dabbling and none of them stepping up and being assertive to address your problems. Your situation brings up several issues. One of them is that a muscle relaxer isn't the appropriate medication for treating the nerve pain part of occipital neuralgia. Ativan might not be the best med for the problem either (which doesn't mean it's not appropriate), but it sounds like it was the best a GP could offer a patient who's already under the care of another doctor for the same or similar condition.

Are you feeling up to doing your own research this weekend so you already know what your options are when you call your neuro bright and early Monday morning? And are you ready to be assertive about an appointment when you call? It seems like so often when we have the least amount of energy and most feel like giving up is when we most need to kick up the self-advocacy a notch. Again, whatever happens, I hope you get some relief soon.

[salamandertom]

One of them is that a muscle relaxer isn't the appropriate medication for treating the nerve pain part of occipital neuralgia. Ativan might not be the best med for the problem either (which doesn't mean it's not appropriate), but it sounds like it was the best a GP could offer a patient who's already under the care of another doctor for the same or similar condition.

Are you feeling up to doing your own research this weekend so you already know what your options are when you call your neuro bright and early Monday morning? And are you ready to be assertive about an appointment when you call? It seems like so often when we have the least amount of energy and most feel like giving up is when we most need to kick up the self-advocacy a notch. Again, whatever happens, I hope you get some relief soon.

I think that part of the issue is that I didn't talk to the nurse. I have a crazy schedual and when I called her I left a message that was confusing, mainly b/c of how much pain I was in. I talked about the muscle in my neck going up into the back of my skull. Now that I have lived with this pain and issue for several days, I have had time to explore it a bit more. The only reason I even knew to look into occipial neuralgia is b/c one of my professors is a doctor and his wife suffers from addison's dx and has this a great deal, so when I mentioned my symptoms he was suspicious. He felt my neck (gently) and declared he was sure that it was that.

I have not mentionted it to my doctors though. I try not to "name" my ailments for them. I let them do the naming. It makes them feel more important. I just describe the symptoms very clearly, so this time I will do a much better job doing that. This is CLEARLY not muscle pain - though the muscles around it are sore, this is nerve pain. If I get frustrated I will mention my doctor professor though. That is legitimate enough. His wife has a condition where he deals with that on occasion - so I don't feel that is too pushy to throw it out there. I try not to be too pushy with them, but in this case the pain is so bad that if I have to I will.

I have made an appointment for a massage on Friday, but I am hoping I can get an appointment to see someone before that. The pain is pretty intense. I have tried everything in my arsenal to relieve it and nothing helps.