Health Organization for Pudendal Education

Hi all,

I have been gone for awhile; just busy and not much news (endless waiting lists and insurance paperwork for tarlov cyst care). It' been on my mind though, that I should come back on and post about a change in my med regimen that has made life way more tolerable in the midst of all this waiting.
I went to The International Pelvic Pain Society annual Fall Conference at the end of October. There was really only a smattering of info that could be useful to anyone. But one person I took notice of, was a brilliant Doctor From the University of North Carolina, Dr. Denniz Zolnoun.
A big topic at the conference was brain changes that occur in chronic pain patients. We start to respond to pain with entirely different areas of our brain and some areas atrophy. There is autonomic dominance in chronic pain: That is, the autonomic aka sympathetic (fight or flight) nervous system and the parasympathetic nervous system are supposed to be in balance, but in chronic pain the autonomic / sympathetic system is constantly in overdrive. This can lead to central sensitization, which is a concern of mine as I was starting to have more and more new symptoms appear the longer I waited for care.
Dr. Zolnoun shared her general medication regimen for people in chronic pain, to reduce autonomic dominance. She said first of all, almost all her patients are not sleeping. You cannot reduce autonomic dominance without sleep. For sleep she uses Trazadone, starting at 50 mg and going as high as 150mg if needed. Daytime meds: Cymbalta, and propanolol, which is a beta blocker traditionally used for high blood pressure. While the blood pressure dose tends to be much higher, Dr. Zolnoun prescribes it at 20mg twice a day (40mg total daily) to even out the autonomic nervous system. It can be started at even lower doses and titrated up if necessary to prevent side effects.
I was at the time taking gabapentin, nortriptyline, and valium. The valium helped me the most, so I asked her what she thought of it. She said it does not achieve reduction in autonomic dominance, because when you take a valium, your autonomic nervous system does have reduced activity, but then as the dose wears off, the autonomic system ramps up again and you need to take another pill. So like narcotics, it is addictive in that instead of offering steady control it is constantly leaving you chasing the next dose. This does not break the cycle of autonomic dominance and central sensitization.
Anyway for me personally, I DO sleep well probably because the nortriptyline I take is somewhat similar to trazadone. And I can't take Cymbalta or any other SSRI because of side effects. But the idea of propanolol intrigued me so I asked my super cool P.A. to prescribe it at the dosage Dr. Zolnoun had recommended. I have been on it for approximately 3 months now and it absolutely does give me steady control of symptoms. I was able to cut my valium use in half as soon as I started taking it, and I am able to take my meds at regular intervals instead of feeling like I am riding a roller coaster of popping pills at random times due to frequent distracting "mini-flares". I really do feel like I was suffering from some central sensitization which has come under control. As to side effects, I took my very 1st 20 mg pill at 5pm so I could see what it would do to me if I had to function awake on the pills. That very first time, I got roaring drunk off the one pill...which was awesome because I had been flaring from sitting so much at the conference, my symptoms were driving me nuts, and I really welcomes the break (I am a non-drinker, so that was my only opportunity to be drunk lol). That was it. My body acclimated after 1 dose and I do not have any side effects at 20 mg twice per day. It is after all a very small dose for a beta blocker. If you try it, just plan not to drive until you get used to the drug, or start on a lower dose and work your way up.
The propanolol is all i took out of the regimen of trazadone, cymbalta, and propanolol but if you have had no luck with putting together a good med regimen, you might want to give all 3 a try together.
Well just passing on info and sorry I haven't been around much.

HerMajesty, it is great to hear from you!!! Sorry, to hear the battles with insurance continue.

Thanks for the recommendation on propanolol. I take a BP med so I'm going to talk with my PC when I see him in March about switching. I'm so glad it has worked for you!

Hi there HM, good to hear from you again, and thankyou for posting about this - it is really interesting to hear about such a different approach, and wonderful to hear that it works for you.

I too am on meds for hypertension (have been for many years now) so I will talk to my GP about this when I next have my meds reviewed. At the moment I am only taking meds when I get flares, but that does happen quite often so I am still getting through the tramadol. The idea of just damping everything down a bit instead sounds good to me.

I do hope that you are able to get the insurance sorted out.

Good to hear from you HM! I have been wondering about you. Sorry about the insurance troubles. Let us know when your surgery date is when you get it set. I will be thinking of you.

This is very interesting about the propanolol. I think maybe my pelvic pain doctor mentioned trying a beta blocker one time as I definitely have central sensitizaton, but we were leery to try it because my blood pressure runs low (like 90's/40's is often my norm). Do you think it would drop my BP too low? Also do you have any research that shows the efficacy of this? I'd like to ask my doctor about it and show her some data.

I wish I could find a good pain doc like this. I really am struggling to get any pain relief as my Neurontin doesn't work anymore. I wonder why trazadone is better than amitriptyline or another TCA? I was on desipramine for several months but didn't have much relief from it only constipation. Maybe I should try trazadone. Thanks for passing this along.

Hey nice to hear from everybody!
Faith with a BP that low I just don't know...the propanolol dose for BP control is much higher, starting at 80mg per day with maintenence at 120 to 240mg. But I don't know if 20mg twice a day could possibly push your BP down just enough to give you orthostatic hypotension or similar problems. I have a feeling unless you have a very good rapport with a practitioner, they might not even be willing to try for liability reasons But hey it can't hurt to ask about it. My BP varies from normal to borderline and from the readings I have had lately, I think it might have dropped my diastolic pressure just a smidge but I'm not 100% sure of that.
Unfortunately I don't know where the idea came from and if there is any research on it. Here's a profile page on the Doc who made the presentation; she was also just voted onto the Board of the International Pelvic pain Society: http://findadoc.unchealthcare.org/direc ... id=0000683 . The first day of the conference was a "basic course' on pelvic pain before the lecture series, and she just brought up the med regimen as part of a general and varied presentation. So I wouldn't know if there is research although my P.A. seemed to have heard of the concept before, so the idea of using propanolol off-label in this way must at least be making the rounds somehow.
A lot of the TCA's are meant to be tolerated during the day and excessive drowsiness is not desireable. Maybe what makes Trazadone different is that it does cause excessive drowsiness, which is cool if you only need a night dose for sleep.
BTW I am not bringing up Dr. Zolnoun to recommend her as a great PN Doctor; that did not seem to be her focus. Her presentation included some really neat stuff about ilioinguinal neuropathy. But I am not sure she treats PN at all so I don't want to create a misunderstanding there. Just giving credit where it is due for the propanolol idea.

HerMajesty wrote:the autonomic aka sympathetic (fight or flight) nervous system and the parasympathetic nervous system are supposed to be in balance, but in chronic pain the autonomic / sympathetic system is constantly in overdrive

Hi, HerMaj.
Exactly the same thing happens when under stress, ie panic attacks, where the sympathetic (not that they are very sympathetic!) dominates the parasympathetic resulting in flushing, hot sweats, clammy hands, racing heart,etc. Both sympathetic and parasympathetic are involuntary nerves, the only way you can directly affect them without meds is by changing your mood (so positive thinking does have a role to play, in part). Dr. Zolnoun's idea that parts of the brain atrophy with chronic pain hasn't exactly brightened my day because wouldn't be at all surprised if half my nervous system hasn't already atrophied from past experiences in the panic attack department! .

Faith:
When i was on betablockers for high blood pressure they brought the b/p down but my heart rate was dropping to 40 and under beats per min. It got so that I'd take a brisk walk round the block before going to bed around 1am so that I wouldn't have to listen to that very slow thump, thump, oops-missed-one, thump on the pillow. Still on bp tabs now, but not betablockers so I suppose I'm out of the running in this new pain management regime .