Health Organization for Pudendal Education

I decided to start a discussion about nortriptyline because i started it recently and so far it has been very good to me.
I have been on neurontin for a year and a half now, would like off due to side effects. Very happy with valium. weaned off ultram before I started nortriptyline. So now I am on neurontin, valium, and nortriptyline.
I am slowly uppung the dose to avoid somnelence and am now at 25 mg p.m. and 10mg a.m. I have seen a definite improvement in symptoms without significant side effects. I flunked three different antidepressants before this one (that is, I went off all 3 due to side effects).
...not sure if it is the combo or if the nortriptyline has potetial to work well by itself, but I definitely am a satisfied customer so far.
Just thought I would throw that out there for all you med shoppers.

can you give more detail as to how it is helping your pain ? reducing nerve kind of pain, symptoms of tight muscles for example? Also, has it allowed you to sit longer for example? just wondering if you might share more specifics.
thanks so much,

cora

Hi Cora,

I have neuropathic itch, which shows up on EMG as pain; and numbness; so I assume the itch I feel is a pain signal being "scrambled" by loss of sensation.
I was already much improved in symptoms / quality of life, with variation from a 1 to a 4 (occasional flare to 5), being always intractable but sometimes so "under the radar" I am fully distracted and forget about it for an hour or more. When it drives me crazy I have to go into the bathroom and apply topical capsacin which works very well for me. The capsacin is a must before any period of sitting and then I measure how well I am doing, by how long I can last sitting before it drives me so crazy I feel like must escape and apply more capsacin to stay seated.
The nortriplyline has helped my symptoms fall totally under the radar for longer periods of time, reduced incidence of flares, and allows me to sit longer without having to do a "capsacin escape". I feel like it's making neuropathy less a part of my life, that is always welcome!
Regarding tight muscles: I am a freak this way in that during the 25 years that I had pelvic joint dysfunction, I had severe musculoskeletal pathology including SIJD and (I found out once starting PT for neuropathy), 16 of the 18 "tender points" of fibromyalgia; however I have always had ZERO musculoskeletal pain. I got the secondary consequences of migraines, interstitial cystitis, and neuropathies (numbness, itch, reduced strength & reflexes) in hands, feet, and pudendal distribution, but NO aches and pains at all, not even a backache. So in answer to your question...I know my piriformis is very locked-up and I am awaiting botox approval to try to release it in case it is entrapping nerves...so I just pushed on it and it feels as locked-up as ever. So I don't think the nortriptyline is relaxing any muscles. But I have trouble answering that question as I do not have a subjective sense of muscle tightness.

Totally agree with you, it helps!

I don't have muscle spasms to cope with, it is just neuropathic pain, and it just takes it down a notch or two at my current dosage. I've not heard that it has any effect on muscle pain.

I am on 25mg at the moment. My instructions are to take it in a single dose at bedtime as this minimises any problems with drowsiness, so I haven't tried taking any in the morning. It does seem to last thru 24 hours with no problems as far as I can see. Once I have the gabapentin up to 1800 and the side effects have settled, I shall start increasing the nortriptyline again. My GP wants me to get it up to 50mg if I can.

It is good stuff, I also get PHN on my back, from where I had shingles some years back. It deals with that very nicely.

I LOVED Nortriptyline! I was on 25mg at night with no side effects for a couple weeks. It took my pain from a 5-6 to a 0-1. I was even able to sit comfortably. Sadly, after a couple weeks I started having serious heart palpitations and was diagnosed with tachycardia as a result of the medicine.

I definitely recommend trying it, especially when the results can be so dramatic at such a low dose.

Ah. Do the heart palpitations matter then? I've been getting them for months, they wake me up at night. I was told that they couldn't be anything to do with my meds and must be an underlying condition and that if they really worried me, I should go to my GP about them. Hmmmm.

Calluna,
I tried switching from amitriptyline to nortriptyline because of weight gain. I went straight from 50mg of one to 50mg of the other. After a week of being unable to sleep well on the nortriptyline, I went back to the amytriptyline so I could sleep better. My doctor said that nortriptyline has a stimulant property that amytriptyline does not have. If this is so, then that would account for both heart palpitations and insomnia.

I am also on Nortryptiline and that has been completely useless even at 50mg/day. Again everybody is different and it is certainly worth trying.

Calluna,

I was told to stop immediately. My GP said that it was detrimental to my heart to be under the constant stress of tachycardia. He also said it was the DIRECT result of the medicine. It wasn't hard to agree, since I didn't have a racing heart before I was placed on it.

Please speak with your doctor.

Warm Regards,

Krista

calluna you can take your own pulse while watching a clock with a second hand, to see if you have tacycardia which is racing heartbeat. Your heart rate should be between 60-100 beats per minute at rest; more than 100 is too fast. Of course check with the Doc anyhow about the palpations, but at least you will be able to tell if you are tachycardic or not.
I had heart palpations for a couple of years after developing a mitral valve prolapse, then they gradually went away, then I got them back for a few days when i tried a TENS unit. Right now on the nortryptiline I have not had any palpations, but I am very prone to get them, I hope I don't because I really like this stuff!
I wonder why everyone else was put on it only at night, and i am on a split dose morning and night which is why I need to titrate up slowly. Will ask next appointment.