Health Organization for Pudendal Education

HerMajesty wrote:I would love to figure this thing out and get enough benefit from it to cut my meds

I'd be interested in other folks response to this. Does anyone get any lasting relief from it? I didn't happen to benefit from mine at all but I was under the impression that any relief one may get would be limited and temporary.

HM - PLEASE contact your doctor about the heart palps!!!! Like ... yesterday!!!!!!

Well, I wouldn't want to be without my TENS. Pain relief does last for a while after I turn off the TENS, especially after using the Burst setting. It is a chore having to wear the thing, but when the pain is bad, it is good to have something that makes a fast difference. It does not make the pain go away - it is still there underneath if you want to focus on it - but it is sort of overlaid with the tingling - I suppose it is distraction really? I am not explaining very well..... Anyway, it helps a bit, and thats good.

It is true that the pain relief that I get from TENS is not enough to deal with the pain completely, not by itself, nowhere near in fact. But I think you know my approach by now, if anything helps even the tiniest little bit, then it is worth having available and worth persisting with. All help is good. For me, this is about management and I am not looking for a cure - not now at any rate - for me it is about quality of life.

So yes it gives limited pain relief that is temporary rather than permanent, but for me, it is still worth having, because it does help, to a degree.

And lots of little helps = a big help. I know I've said it before - it is like having a toolbox with lots of different things in there, that you can get out and use to deal with the pain when you need them. TENS is one of the things in my toolbox.


And yes - HerMajesty - do check with your doctor that it is ok for you to use the TENS, as you are having heart rhythm anomalies!

Thanks nyt for such an informative post. I've copied it to refer to later.

My experience is that the TENS is a distraction. Apparently, you can't feel pain and soothing stimulus at the same time so the TENS just basically gives you a little mini massage so you don't feel your pain. It does last for a little while after turning it off. Like nyt I usually wear mine when I know I'm going to be in pain.

Hey guys,

Thanks for all the responses I will read through them all very carefully at some point when I am not in a rush; right now I just wanted to jump back on because all yesterday it was on my mind that I should let everyone know that I am just stupid but not dead. No Doc ever really cared about my PVC's back when I had a lot of them, but I will listen to everyone and not use it again at this point: what I am going to do is call Empi later in the week and if they don't tell me it is safe to use AND show me how to use it effectively I will send it back.
Nyt, I did actually grow half a brain and read some of the manual and find the settings you were talking about. Thanks for your patience with me.
But then I tried it again last night and it made me feel worse, not better (no more palps), in fact so much worse I had to take a valium to sleep whereas I generally take no meds after 4pm because night is when I feel best.
I have a clue why: I have a lot of numbness and neuropathic itch; and I tried it on hubby's back last night for a pulled muscle and he said it made it numb. Well, more numbness it the LAST thing I need; I feel like it kind of drives my other symptoms. I also think it is why I managed to comfortably turn the thing up so high the 1st day, and leave it on so long, I gave myself heart palpitations.
So I am going to talk to Empi once, and unless they change my outlook, back it goes.

Thanks for checking in with us, HM!
And STOP referring to yourself as stupid! You are far, far from it!!!!
I find it interesting that you said it made you feel worse. That's what happened to me, no matter what setting I had the darn thing at. I would have all sorts of things spasming/jumping/stabbing/twitching .... I find it FACINATING that you feel pretty good at night! Really??? I'm like - How can this be?!?
Well, let me know how you make out with Empi. I really admire your diligence with trying to find something to help decrease your meds!
Love,
Karyn

So HerMajesty, do you have mitral valve prolapse? Is that what caused your heart palps in the past? Because I have been diagnosed with it (about 15 yrs ago) and none of my drs have said anything about it and the TENS unit.

I too am amazed that you feel best at night. That is my absolute worst time of the day. I've been having a flare since Thursday when I attended a dinner with my husband given by his boss. This morning was pretty bad too. I think because I had PT yesterday and kind of overdid it on the errand running. Anyway, after I got everyone off to school and work, I put on my TENS and laid in bed for an hour and it seemed to help some. Now I have to go pick my daughter up from school and I really don't want to sit!

I have the thing in a return bag waiting to go to the post office. I called empi and they wanted me to jump through hoops to get Doc clearance about the PVC's before an Empi rep would talk to me, and I am not jumping through hoops for something I am already 99% sure is going to make me feel worse not better no matter how I use it.
Griff, Yes I have a mild mitral valve prolapse since 2007 that the cardiologist told me is "almost a normal variation for a woman of your age" (THANKS, Doc! )...apparently pregnancies predispose you to getting a mitral valve prolapse because of increased blood volume during pregnancy. It is not the prolapse itself that would be a problem with the TENS: It is that for some reason my prolapse announced itself by creating an arrythmia and THAT is what might be a TENS contraindication. In 2007 I started getting heart palpitations which I could feel in my chest and which showed up as missed beats when I took my pulse. My husband who is a paramedic confirmed PVC's with the ECG machine, so that is why I went for an exam and found out about the prolapse. At first I was getting lots of PVC's, shortness of breath, and fatigue. But then my circulatory system adapted I guess and I felt normal after a month but still had occasional PVC's over the next year or two, but they gradually went away. So then I had a whole bunch of PVC's the 1st night I used the TENS. If you have a mitral valve prolapse but its not associated with any abnormal heart beat, then I assume there is no risk from the TENS.
Karyn, It WAS stupid of me to decide to strap the thing on without taking the time to even open the manual Not that I'm stupid but that I'm smart enough to know when I do a stupid thing
Everyone is so surprised I feel better at night...what happens is since I take my last dose of meds at 3:30 or 4pm, I am loaded up from a day of meds in the evening and I go to bed pretty early, usually 7 to 10pm. So I am still well medicated when I lie down to sleep, and of course the lying down is the best thing in the world for PN. But then by the time I wake up at 5 or 6am, I have been unmedicated for 13 or 14 hours and have to take my 1st dose and wait for it to kick in; that is why my mornings are the yuckiest! I take my meds generally 5am and again at 7:30am because it takes that much to get me comfortable for the day; Then sometime between 10:30 and noon for the 3rd dose, and 3:30 or 4 for the final dose. I have just experimented and find that what keeps me functioning well during my waking hours.
Well that was way of topic for TENS and I am done with that misadventure so this ain't my thread anymore...I am glad some of you have got some help from it

HerMajesty,

So sorry to hear about the heart palpitations and TENS not working for you. I thank you for asking the questions and otthers for providing a guide for use by people witth PN. I just got a TENS today for my 'hip' and was unsure of the best way to use it and placement (even after saying it was my pelvic nerve not my hip the guidance was questionable). I will bring it to PT tomorrow and she what she says but the info on this site givesme that first hand user perspective.
Janet