her majesty, just read your post too, and i so agree with you, and plan to bring that up with the dr. when I see her. I am also on Cymbalta and I started that right when i got pain. But it may be time to look at the whole program and do a super slow taper. maybe take a couple months to do it. I see her in Feb. so that's when i get to discuss all this.
thanks so much for all of your suggestions ladies, nurses, y'all
Cora
nortriptyline
Re: nortriptyline
Onset PN/PFD/centralized pain in Oct 06 after years of athletics,nursing career and dog training. PT for two years with improvement, now go for tune-ups and pain management. Stopped Cymbalta, was on M.S. Contin, then Kadian, and briefly Methadone for pain management, now off those meds and pain is well managed with Buprenorphine. Followed my pain management specialist.
Re: nortriptyline
I treid nortriptyline once and I needed to have an ekg before the doctor would give it to me. I am thinking about starting it again. Two years ago I was taking 20mg of paxil and 10mg of nortriptyline and I felt much better emotionally.
Re: nortriptyline
Cora, this is the link to the thread on nurses. http://www.pudendalhope.info/forum/view ... f=11&t=667
I probably have a different take on the antidepressant vs. narcotics debate. Narcotics when taken as prescribed are very safe medications and have been around for a long enough time to know that they are relatively safe. The disadvantage is that you may become tolerant and have to up the dosage so they may not be ideal for long-term use.
I'm not a huge fan of antidepressants because I used to be on a forum that had a lot of women who felt that the cause of their persistent sexual arousal syndrome was due to going off of antidepressants-- although SSRI's (not TCA's) seemed to be the main culprit. I knew that was not the cause in my case because I had never taken antidepressants when PNE hit but there were a lot of women who had and their PSAS started when they went of the drug. I could not take TCA's because it affected my heart too much.
I actually felt just as much of a stigma when telling healthcare providers I was on an SSRI as I did a narcotic -- even though I was not taking it for depression but rather for relief of symptoms, I always felt like they were looking at me as a psych case.
I'm sorry, there are no easy answers for you but at least here you know that no one will judge you for taking what you need to for pain relief.
Hugs,
Violet
I probably have a different take on the antidepressant vs. narcotics debate. Narcotics when taken as prescribed are very safe medications and have been around for a long enough time to know that they are relatively safe. The disadvantage is that you may become tolerant and have to up the dosage so they may not be ideal for long-term use.
I'm not a huge fan of antidepressants because I used to be on a forum that had a lot of women who felt that the cause of their persistent sexual arousal syndrome was due to going off of antidepressants-- although SSRI's (not TCA's) seemed to be the main culprit. I knew that was not the cause in my case because I had never taken antidepressants when PNE hit but there were a lot of women who had and their PSAS started when they went of the drug. I could not take TCA's because it affected my heart too much.
I actually felt just as much of a stigma when telling healthcare providers I was on an SSRI as I did a narcotic -- even though I was not taking it for depression but rather for relief of symptoms, I always felt like they were looking at me as a psych case.
I'm sorry, there are no easy answers for you but at least here you know that no one will judge you for taking what you need to for pain relief.
Hugs,
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: nortriptyline
I am "weaned up" up to 50 mg now and am seeing my Pain center PA soon and will request to continue to "wean up" to 100mg...I have had no heart palpitations or racing heartbeat, and my symptoms have become very "background". If very distracted I can forget about my symptoms so much, I think my 1-5 is down to 0-3 This is with the lifestyle accomodations, it is not like I am wearing jeans or anything But still, the improvement is very notable.
The reason I want to raise the dose even further is that I want the courage to try to wean down, or maybe even off, my moron-tin (aka neurontin). At 50mg of nortriptylineI am however starting to notice the side effect of being even somewhat stupider that what I am like on moron-tin alone. Also at times I seem to have a flat affect: like it is hard to smile and speak spontaneously to people, although I have always been very social. I am thinking this might go away as I adapt to the med and / or if I start pulling back on the moron-tin dose?
I want to get my symptoms as well controlled as possible and then worry about how to make myself less of a bimbo. Right now I am content to be comfy and dumb
The reason I want to raise the dose even further is that I want the courage to try to wean down, or maybe even off, my moron-tin (aka neurontin). At 50mg of nortriptylineI am however starting to notice the side effect of being even somewhat stupider that what I am like on moron-tin alone. Also at times I seem to have a flat affect: like it is hard to smile and speak spontaneously to people, although I have always been very social. I am thinking this might go away as I adapt to the med and / or if I start pulling back on the moron-tin dose?
I want to get my symptoms as well controlled as possible and then worry about how to make myself less of a bimbo. Right now I am content to be comfy and dumb
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: nortriptyline
Comfy and dumb
I am still ticking along at 25mg with the nortriptyline. The palpitations and racing heart seem to have gone away, haven't had any problems with that for a week at least. Also I am feeling quite good really - yesterday was a good day and today looks to be good as well. I am thinking that maybe I will stay with the nortriptyline for a bit longer, or maybe even take the dose up a bit (once I am off the gabapentin, just a few more days to go) and see if I can get to 50mg.
Mind you, I do feel that lifestyle changes are what has really made the biggest difference. I don't sit very long, and only on my cushions, I wear loose clothes, and I am just generally careful - you know how it goes. I do get some spikes still, but I can breathe and visualise through those, other than that it is there in the background but I can ignore it. I am walking quite a lot now with our puppy as she is getting bigger, three times a day if I can manage it, and I feel so much stronger and healthier in myself.
By the way, I did get told (pain clinic) that it wasn't worth taking nortriptyline higher than 50mg for pain relief, will be interesting to see what your doctor says.
I would expect that once you've been at your current dose for two or three weeks, your side effects should subside, that's what happened with me. I'd say that for me, I am now having no side effects at all with nortriptyline. I hope that the same is soon true for you!
I am still ticking along at 25mg with the nortriptyline. The palpitations and racing heart seem to have gone away, haven't had any problems with that for a week at least. Also I am feeling quite good really - yesterday was a good day and today looks to be good as well. I am thinking that maybe I will stay with the nortriptyline for a bit longer, or maybe even take the dose up a bit (once I am off the gabapentin, just a few more days to go) and see if I can get to 50mg.
Mind you, I do feel that lifestyle changes are what has really made the biggest difference. I don't sit very long, and only on my cushions, I wear loose clothes, and I am just generally careful - you know how it goes. I do get some spikes still, but I can breathe and visualise through those, other than that it is there in the background but I can ignore it. I am walking quite a lot now with our puppy as she is getting bigger, three times a day if I can manage it, and I feel so much stronger and healthier in myself.
By the way, I did get told (pain clinic) that it wasn't worth taking nortriptyline higher than 50mg for pain relief, will be interesting to see what your doctor says.
I would expect that once you've been at your current dose for two or three weeks, your side effects should subside, that's what happened with me. I'd say that for me, I am now having no side effects at all with nortriptyline. I hope that the same is soon true for you!
Re: nortriptyline
HM, your post brought back a few memories of my lexapro days. I had almost forgotten that "flat affect" feeling -- like I wanted to care but couldn't. Is that sort of how you feel?
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: nortriptyline
I am not a fan of Lexapro. I took it for depression for about 2 years and this was before my pain started. It did give a very "flat" feeling along with low libido (actually NO libido) and these things actually made things worse for me in my relationship with my husband. By the time I realized the problem and started weaning off of it, he was ready to divorce.
Burning vulva pain began 10/09
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
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- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: nortriptyline
Violet,
Re the flat affect: My emotions are the same, I feel like I was coming across differently, like I met somebody who I was really looking forward to meeting and realized when I was introduced I did not smile and kind of said an awkward hello like I was 13 again. More than anything I felt like my facial muscles were frozen and I could only smile If I forced it like when somebody is taking your picture and tells you to smail big for the camera. I think that was mostly a function of upping the dose because it is happening less now that I have been steady on 50mg for about 2 weeks.
Griff,
I couldn't tolerate lexapro anyhow because it bothered my bladder, but the sex drive experience you had was why I quit elavil even though it was starting to work pretty well. I felt totally chemically neutered and I DID realize that this would impact my marriage too much and got off it quick. Already I had put on 60 pounds when the PN got so bad that I had to stop doing daily excercise, and started wearing the frumpy loose PN clothes, so I was thinking how much more can my husband tolerate? I started nortriptiline specifically because my PA told me it was very much like elavil but lacked some of the side effects including sexual side effects. This has turned out to be true for me.
Everyone,
I was just at my PA's office today and got the info to clarify a couple of points:
1. 50mg vs. 100mg - someone earlier had stated their Doctor told them there was not really symptom improvement between 50mg and 100mg nortriptiline. My PA said that in ordder for the manufacturer to officially claim that increasing the dose increases benefit, they have to do a study and benefit has to increase for 50% of the patients in the study. This did not happen for nortriptiline, however SOME patients in the study, maybe 25% did see improvement. So he advised I try the 100mg and if it doesn't give me any further benefit I can go back down.
2. Taking nortriptiline only at night, vs. in divided doses morning and night: He said while it supposedly can last in your system for up to 24 hours, it peaks at approximately 8 hours. Right now I am 25 in the a.m. and 25 in the p.m. I will either go to 50-50 or else stay at 25 a.m. and go to 75 p.m. if the daytime side effects are too intense. But, this makes sense to me as my symptoms are worse in the a.m. which is unusual for people with PN. So, if I take more right before I go to sleep, it should be peaking when I wake up. Anyone who is on nortriptiline and has the usual pattern of feeling worse in the afternoon, it sounds like you really should see if you can tolerate a morning dose, because then it will peak when your symptoms are worst.
Hope this info was helpful, my PA is wonderful when it comes to med information!
Re the flat affect: My emotions are the same, I feel like I was coming across differently, like I met somebody who I was really looking forward to meeting and realized when I was introduced I did not smile and kind of said an awkward hello like I was 13 again. More than anything I felt like my facial muscles were frozen and I could only smile If I forced it like when somebody is taking your picture and tells you to smail big for the camera. I think that was mostly a function of upping the dose because it is happening less now that I have been steady on 50mg for about 2 weeks.
Griff,
I couldn't tolerate lexapro anyhow because it bothered my bladder, but the sex drive experience you had was why I quit elavil even though it was starting to work pretty well. I felt totally chemically neutered and I DID realize that this would impact my marriage too much and got off it quick. Already I had put on 60 pounds when the PN got so bad that I had to stop doing daily excercise, and started wearing the frumpy loose PN clothes, so I was thinking how much more can my husband tolerate? I started nortriptiline specifically because my PA told me it was very much like elavil but lacked some of the side effects including sexual side effects. This has turned out to be true for me.
Everyone,
I was just at my PA's office today and got the info to clarify a couple of points:
1. 50mg vs. 100mg - someone earlier had stated their Doctor told them there was not really symptom improvement between 50mg and 100mg nortriptiline. My PA said that in ordder for the manufacturer to officially claim that increasing the dose increases benefit, they have to do a study and benefit has to increase for 50% of the patients in the study. This did not happen for nortriptiline, however SOME patients in the study, maybe 25% did see improvement. So he advised I try the 100mg and if it doesn't give me any further benefit I can go back down.
2. Taking nortriptiline only at night, vs. in divided doses morning and night: He said while it supposedly can last in your system for up to 24 hours, it peaks at approximately 8 hours. Right now I am 25 in the a.m. and 25 in the p.m. I will either go to 50-50 or else stay at 25 a.m. and go to 75 p.m. if the daytime side effects are too intense. But, this makes sense to me as my symptoms are worse in the a.m. which is unusual for people with PN. So, if I take more right before I go to sleep, it should be peaking when I wake up. Anyone who is on nortriptiline and has the usual pattern of feeling worse in the afternoon, it sounds like you really should see if you can tolerate a morning dose, because then it will peak when your symptoms are worst.
Hope this info was helpful, my PA is wonderful when it comes to med information!
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: nortriptyline
HM,
Your info about the drug "peaking" at eight hours is very interesting. I have been taking my antidepressant for pain (Zoloft) all at once at bedtime. But I DO experience most my pain in the afternoon and evening. So I will try to take some in the morning. Good advice!
Thanks for posting that info.
Lernica
Your info about the drug "peaking" at eight hours is very interesting. I have been taking my antidepressant for pain (Zoloft) all at once at bedtime. But I DO experience most my pain in the afternoon and evening. So I will try to take some in the morning. Good advice!
Thanks for posting that info.
Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: nortriptyline
Lernica,
Every drug peaks at a different time, you can check the peak time for your drug on the professional labelling, which is a pain in the butt to find, or ask your pharmacist to look it up for you. Some drugs build up in your blood so that what is most important is not when it peaks but what your blood level is. I don't know the details for zoloft but I would not recommend switching p.m. to a.m. without checking with your Doc first. I don't know your level of disability, but if you are able to do any driving or if you work, and you switch your entire night dose suddenly to daytime, you could spend the day high as a kite and be a danger to yourself or others.
Every drug peaks at a different time, you can check the peak time for your drug on the professional labelling, which is a pain in the butt to find, or ask your pharmacist to look it up for you. Some drugs build up in your blood so that what is most important is not when it peaks but what your blood level is. I don't know the details for zoloft but I would not recommend switching p.m. to a.m. without checking with your Doc first. I don't know your level of disability, but if you are able to do any driving or if you work, and you switch your entire night dose suddenly to daytime, you could spend the day high as a kite and be a danger to yourself or others.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.