Health Organization for Pudendal Education

Hmmmm, since I still have four weeks to go I think I'll place a call back to the dr's office to see if I can increase my dosage. I find it very difficult to be the educator of the doctor, but I'm learning to be stronger and stronger with every appointment.

Ladies,
This is all very encouraging. Several years ago I was put on amitriptylline for severe IBS. Right now, my pain is out of control, so Tuesday, when I see my pain doc, I am going to mention these meds. Thanks a bunch!

Well, we've upped my nortiptyline to 20 mg morning and night. I have gone three days with little to no pain. Never above a 2 or 3. So of course feeling good decided to do more, alas...when will I learn. Just because I'm not feeling the pain doesn't mean I can go back to bending over and stretching everything out. I think the good news is the nortriptyline was helping, especially when I'm being overly careful. Just have to remind myself of that.

I have been on 100mg for awhile now and my verdict is this:

50mg (25mg twice per day) provided very good symptom relief with almost no long term side effects. After adapting to each dosage increase, I really felt fine.

100mg provides even better symptom relief, but the price I am paying in side effects is really too high. I have not adapted to it but continue to feel that "drugged" and tired feeling, have gained weight and started to get acne. When I try to reduce food intake due to the weight gain, I wind up feeling absolutely drugged-out high, as the meds absorb faster on an empty stomach.

So, I am going to wean back down to 75mg, (25am and 50pm), and if I still feel yucky I will go back to 50mg (25am, 25pm).

As I stated in another thread I just started, I am considering hypnotherapy to deal with my remaining symptoms; if this does not work maybe also I'll try accupuncture. But I have found the line for myself re: how important is it to not feel the neuropathy, vs. how important is it to be able to function mentally? I'm not going to be a medicated zombie just to be totally comfortable.

In the long run, I am still working on an actual cure: 1st botox then an eval to see if I am a candidate for tarlov cyst surgery. I just know the process is going to take months and months (that is MORE months that it has ALREADY taken), and prefer to be comfortable in the interim.

HerMajesty wrote:if this does not work maybe also I'll try accupuncture

Her Majesty,

I am going for my first accupunture treatment on Friday. I've tried to reserach about PN and accupuncture, but there's not much out there. I did find this site which was interesting. http://www.hiddenrhythmacupuncture.com/ ... e-pain.pdf

Have you found any published articles or anything about acupuncture and PN? I know the doctor who is doing it probably won't be familiar with PN so I am going to take her some info about it. I'll be sure to let people know what I think about it. I think it usuallyh takes 3-6 treatments before you can tell if it's doing anything.

Sorry I know this thread isn't really about acupunture, but I just saw that you were considering it.

Hi Faith,
Thanks for the article, still have to take a look at it as I am in a rush this morning. I don't have any specific info about accupuncture and PN but if you search the term on the forum, there is a recent thread about it on here. The overall impression I got, was that it does help some people with pain control but requires frequent repeat visits so it becomes cost-prohibitive.
I want to clarify that I am playing around with drugs, hypnotherapy and accupuncture because I am biding my time...I do not think ANY are a permanent solution to PNE, they are all palliative care.
After 6 months of game-playing with a Dr. office that was claiming to be "working on approval" for botoxing my piriformis muscles, I am seeing a new Doc today in hopes of REALLY getting botoxed in the near future. And, I have my info submitted to Dr. Feigenbaum in Kansas City to see if I am a candidate for tarlov cyst surgery. Those are the things I am doing to get better. The interim is a waiting game and I am trying to make it as pleasant a wait as possible.
But, I don't want to give the impression that I think drugs, hypnosis, or accupuncture can solve anyone's problem with PN. Me and my neurontin-brain lost track of your case updates Faith so I don't know if you are also just biding your time while waiting for appointments etc...but just as a heads-up I don't think the accupuncture is a viable long term solution.

I'll gladly contribute more to the acupuncture thread, but I do want to make a couple of points.
1. Acupuncture treats the whole body, not a specific body part.
2. You will NOT see dramatic improvement in 3 - 6 visits. Especially if you're only planning on going 1ce a week.

Warmest regards,
Karyn

I've noticed the last two times I've added 10mg of nortriptyline to my evening dose I don't sleep well, or hardly at all, for at least three or four nights. Anyone else have this oddity happen to them?

I think that difficulty sleeping is one of the listed side effects. Weird isn't it, when drowsiness is such a common side effect. I hope it goes away for you.

HerMajesty wrote: Me and my neurontin-brain lost track of your case updates Faith so I don't know if you are also just biding your time while waiting for appointments etc...but just as a heads-up I don't think the accupuncture is a viable long term solution.

I agree HM. I am just trying to get pain management while I await an appointment in August with Dr. Hibner.

Karyn wrote:1. Acupuncture treats the whole body, not a specific body part.
2. You will NOT see dramatic improvement in 3 - 6 visits. Especially if you're only planning on going 1ce a week.

That is my goal to help my widespread myofascial pain with acupuncture. My acupuncturist/doctor said in 3-4 visits you will at least see a tiny bit of improvement, even if it only lasts for an hour. If not she doesn't keep taking people's money (which I appreciate).

My first treatment felt worthless, it didn't help at all. She inserts the needles and then connects them to something like a TENS unit. I dont' see how that is going to provide any long term relief because once the TENS unit is removed the pain comes back. In my opinion massage lasts longer and seems to treat my underlying problem better. Ok, I will stop talking about this here and move it to the acupuncture thread. Just wanted to clarify those things.