I'll be waiting to hear what she tells you about it. Have you tried changing your sleeping arrangement(pillows) etc.. I found that since my ON has gotten so bad that I can't use the pillows I used to and had to switch to a semi-soft pillow. I used to use the cervical ones, but for some reason they aggravate the occipital nerves, which doesn't make any sense to me. Has your doctor mentioned any anticonvulsants?

Take care

No she hasn't. It may be because in addition to the ON, I also have MS and am on drugs for that too. Believe me, it's complicated.

Right now I am not getting proper sleep. I have sleeping pills but am reluctant to take them constantly. Last night I was drifting in and out of sleep and my head was killing me.

You know, I can totally see how people in pain can end up addicted to painkillers and sleeping pills. ON certainly screws you over for sleep and the pain is just brutal.

I have 2 soft pillows. I tend to fold the top one in half, as I sleep on my face.

I switch out my fentenyl patch today so we'll see how that goes. SO far I am not impressed with it. It's not more helpful than the morphine and it's definately more expensive and not covered unless my doc files the papers saying I need to have it.

I head to the pain specialist on Thursday again this week-I pretty much have a standing appointment till Jan. when I have my lido drip trial.

I second the pillow issue. They are my enemy!
I hope the pain patch continues to help.
I hear you on the flares (or at least I think we are experiencing the same thing.)

Went to see my pain specialist today and told her about the bad week I have had. Yesterday I got dizzy, shakey and nauseated all of the sudden from the patch. She said it would take about 2 weeks to get the pain altering effect working from the patch so if I could hang on it should be worth it. She wrote me a script for an anti-nausea med they give to cancer patients on chemo to help me with the side effects.

I put another patch on this afternoon and wham! I got the sick feeling coming on again so I took one of the nausea meds and it helped. THANK GOODNESS!

She also said that she talked to the rest of the pain team and it looks like I am going to get the ONS trial lead. not sure when, but I will try and find out a ball park timeline next week when I see her.

I have a Lido infusion scheduled for Jan. 12th so she's given me enough meds to get me through till then as she will be off over the holidays.