Hi

I am having no success getting to a dr so that I can get more pain releif. On 40 mg nortriptyline. I must have severe allodynya. I can't touch, rub or scratch ANY part of my body it causes severe burning and stinging that lasts a long time. Even my lips nostrils and tongue burn and tingle every second. Have u guys ever seen somebody this bad? What had happened to them?
I so scared. This is progressing by the day. I feel like the nortriptiline is doing something bc some of the weird sensatooms feel fainter but it doesn't seem to jelp the pain. Or maybe it is but my pain us skyrocketing? The progression in 4 months has been astonishing from 0 pain to unluvable. Lifting my arm burns cus it stretches the skin... Seriously? Could the med be causing some of the sensitivity? I had it before med but it's really progressed in these two weeks .

I at my breaking point mentally. I feel like I need to turn my brain off. I have a dr appointment Tuesday. I need to ask for some
Thing that shuts down my brain and something else pain and something that keeps me asleep. What should it be?

Canagirl,
Can you ask to try Vicodin for during the day along with the nortriptyline at night? I use 1 Vicodin during the day which helps my severe burning pain sensations in legs and now arms as well. At times I need two. This allows me to cope with the pain, however it doesn't completely take it away. You may also try Valium at night. Hope this helps.

I read in another thread (the ER one) that you said you have a great primary care physician and 2 lousy neuros.

Therefore, I suggest you call the PCP and tell him where you're at now. Tell, him exactly what you tell us. Make sure to tell him that the Nortriptyline seems to only (very little) help the sensory issues, but not the pain.

ASK him to ADD another drug like Neuronton...and ask that he not start at the bottom of the dosage chart. You are in severe pain and need to get some relief now, not in 3 weeks of slowly increasing the dose. Therefore he should be considering Rxing like 300 mg 3 times a day. That is still a lower dose, but not at the bottom.

Are you getting any sleep?

I get some sleep, anywhere from 2-5 hours ( broken) I'm usually up at 2 or 3 agonizing in physical and mental pain for the rest of the nught. It spreads by the day right and it's literally making me crazy.

I can't call my pcp drs here don't give out phine numbers. I tried showing up at his office yesterday but he wouldn't see me told his receptionist to tell me to go to er, or wait for my appointment on Tuesday. Pcps don't work weekends here.

Is Valium a benzo? I haven't heard of it before, I wonder if it's like ativa

Well, at least you have an appointment on Tuesday.

The lack of proper sleep is definitely adding to the problem and making it harder for you to cope. You should ask him short term solutions for this while your are trying to get your pain under control.

Have you ever tried Melatonin for sleep? Just make sure to ask/tell him about any you take or ask him to Rx you and whether they would interact with the nortriptyline...and the new med he starts (I'm being optimistic that he will ADD you on something else as well).

My husband just reminded me that I have a prescription for GABA from a neuro I saw in sept ( he wanted me to try it for my twitches). I'm going to get it filled . What about my nortriptiline? Do I stay at 40? Decrease it? By how much? I'm worried about starting at 300x3 what would be a lower starting dose?
Also, I feel like a freak for not being able to handle this mentally. I'm literally crying and yelling almost all day. U all are so calm and normal. What med is safe to take with nortriptiline and GABA that will decrease my mental status. I believe my mental state is causing new neuronal connections to be made that are increasing my pain and causing me to fall further mentally and I need to get control of it. I have an appointment for biofeedback on Thursday. Hopefully that helps, cus I saw two pschycoligists and they were useless to me. They just asked me questions about my family life and tell me to think positive wtc. Which makes sense, but I need someone to guide me thru or teach me how cus I cant. So hopefully biofeedback will do that.

Anyways, I really appreciate everyone that posts suggestions. I am taking them to my dr on Tuesday. U all deserve a medal for ur efforts

Remember everyone is different, but I'd say go slow & see how you tolerate the med first. It says here online, to do 300mg x 3 daily for a starting dose. As I remember, my neuro had me start at 100mg x 3 daily. It made me feel light quite light headed. At 300mg for a dose, I think I would have stayed on the couch. LOL. Anyway, I'd say see how your first day goes at 100mg x 3.

I saw a psychologist when my symptoms started. She was very specialized and dealt with chronic pain patients. We did talk about all aspects of my life and she had lots of different modalities to teach me to deal with the stress of having chronic pain.

A therapist might not be work for you right this minute because you are having acute onset of symptoms and just need some pain relief. Once you get your symptoms under control, a good pain therapist would help you get your emotional state balanced and help you move through this terrible experience. I highly recommend this. Meditation at the end of the day seems to help me a lot.

Still losing it. I can't do this anymore. I still feel alone. It seems like nobody else has this as widespread as I do and as constant as I do. I don't even know what to write anymore, but feel like I still need responses from eberyone to see if there's someone like me.
This is too hard. I can't imagine living for another year like this. I need research to hurry up and start making stem cell trials available to everyone who wants ot. Not just certain types of neuropathy. We know the risks just give it a shot and see what happens

Do you have diabetes.... My experience with this dread is just to accept it is not going any where ...when I stresses it just made it worse. I have taken percocet and it does help. However it is an opiaod and very addictive and can be harmful.

I take Motrin it helps quite a bit... I also get a few ice cubes put them in plastic bags and wrap my foot in it that really helps, I also have had compound which was excellent. My feet feel better when I walk as opposed to siting. Right now I feel like I have beach sand in my feet along with burning and numbness. I just ignore it unless it's intolerable then I start with my regime. Irk my feet with be gag and another menthol and put medicated powder on them.... If none of this works illtake a Xanax or acetemenophine oxy condone. Has tobe really bad for the oxy