[canagirl]

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?

[Lukesmom]

Originally Posted by canagirl

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.

[en bloc]

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?

[canagirl]

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

[en bloc]

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).

[canagirl]

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

[groucho]

Originally Posted by canagirl

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.

[madisongrrl]

Originally Posted by en bloc

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...

Agree, agree, agree!!!

When I had an onset of symptoms, I went to Google Scholar and started doing some research. Found a few articles and asked my primary to prescribe these drugs.

http://www.thelancet.com/journals/la.../abstract?cc=y

Combining these was extremely helpful for me. It got my pain under control to the point where I could stop stressing out over my pain and allowed me to work. I'm currently on 2400 mg of gabapentin and 25 mg of nortriptyline.

[en bloc]

If you try it on your own, without advise from the doctor, then by all means start at a lower dose...like 100 mg 3 times a day.

You still might get some dizziness, sleepiness, etc with that dose (especially since you are taking the nortripyline), but these side-effects usually subside rather quickly.

***DON'T take anything else to calm your mental state right now!! You won't know what side-effects are from what if you add more then one thing. And you'll add to increased side-effects in general. If you get some pain relief, then your mental state will likely calm on it's own as a result.

[St George 2013]

100 mg 3x/day will probably help you a lot until you see the dr on Tues.

The normal side effects will calm you down. Which at this point you need more than anything.

Hang in there.

PS....we're not always calm....last Monday night I was laying on the couch crying and moaning from the pain.

Debi from Georgia