Health Organization for Pudendal Education

I'm stunned some of you guys are better after a long flight!! What, sitting all the way?? Logically this sooooooo doesn't seem possible, though maybe it is with PN, and not PNE? Nowadays I think of myself as a PN'er and not a PNE'er (I hope), and in the past have experienced exactly the opposite on a flight. When pn pain was flaring I had to stand up throughout the flight there and back and it's no fun to sit for take off and landing. I'll always remember the sea of expectant faces looking up at me from seated passengers when i stood to quietly read my book. I'm sure they thought I was about to read them a sermon or something. .
Also, didn't find the altitude two thirds of the way up a Spanish mountain range helped my symptoms at all, but the sun definitely eases my muscular pain (one excuse to go back for anyhow!).
But what a great start to a holiday for you guys that it works for. Takes you out of your illness for a blissful few days, that can't be bad.
Take care,

birdlife wrote:I'm stunned some of you guys are better after a long flight!! What, sitting all the way?? Logically this sooooooo doesn't seem possible, though maybe it is with PN, and not PNE? Nowadays I think of myself as a PN'er and not a PNE'er (I hope), and in the past have experienced exactly the opposite on a flight. When pn pain was flaring I had to stand up throughout the flight there and back and it's no fun to sit for take off and landing. I'll always remember the sea of expectant faces looking up at me from seated passengers when i stood to quietly read my book. I'm sure they thought I was about to read them a sermon or something. .
Also, didn't find the altitude two thirds of the way up a Spanish mountain range helped my symptoms at all, but the sun definitely eases my muscular pain (one excuse to go back for anyhow!).
But what a great start to a holiday for you guys that it works for. Takes you out of your illness for a blissful few days, that can't be bad.
Take care,

I actually know what I have, which is tarlov cysts - probably not entrapped at the pudendal nerve, but I have cysts filled with cerebrospinal fluid pressing on my sacral nerve roots. This leads to multiple neuropathies including pudendal. Somehow they effect CSF pressure throughout the body, as I am so joyfully reminded of now that I have developed chronic vertigo. So yes, I think how your neuropathy responds to atmospheric pressure has a lot to do with etiology. A friend of mine has a daughter who has had chronic increased CSF pressure (pseudotumor cerebri) following a head injury, and that girl also loves airplanes because they take away her constant headache. So I guess high atmospheric pressure lowers or stabilizes CSF pressure, and I can see your point, if your nerve is constantly being squashed by a mechanical entrapment of any kind, you would probably not expect relief from a pressure change.

As far as your experience with the mountain, going higher up absolutely will not help someone who is pressure sensitive. If your neuropathy is pressure sensitive, you will be helped by HIGH atmospheric pressure, and the higher you climb, the lower the pressure gets. Airplanes are the exception because the atmospheric pressure outside an airplane in flight is too low for anyone, so they artificially pressurize the cabin to compensate. That is what makes an airplane a high pressure atmosphere...and if the pressure lowers, those little masks fall down If you want to seek high pressure in nature, you need to go down a mountain not up one. It's confusing.

Sorry to hear you have vertigo to add to the list, HM , had a brief spate of that 4 years ago and pleasant it is not! Thanks for explaining the atmospheric pressure phenomenon, I always wondered why there was a certain point on that mountainside where I'd get a headache and feel nauseated whether I was going up or coming down, so that must be the very point at which the high pressure changes to low. Y'know it's a wonder to me they haven't made you a Moderator on here yet, your posts are always knowledgable!

One thing I wanted to say to you from one of your other posts, where you mentioned you have Morton's Foot. As you (obviously!) would already know, this is where your 2nd metatarsals are longer in the foot than your 1st, leaving you with poor distribution of bodyweight and all the attendant problems of that. Thought I would tell you about the section in my TP massage book, that says 1 in 4 have this problem (my hubby does). To condense what is said I'll just post the very simple solution, I don't know if you've tried this: "Place a thin pad under the head of the 1st metatarsal (ball of the foot). Cut a circle the size of a quarter to a half dollar depending on the size of your feet, out of Scholl's molefoam padding, trim off and keep the pad in place by sticking them to the bottoms of a pair of Scholl's work comfort insoles, or similar. Take great care that the pads don't extend under the 2nd metatarsal. Do this with your house slippers too." Proper functioning of the foot returns immediately, he says, and pain in the foot and other parts of the body become much easier to resolve. The author of the book, Clair Davis, says he can personally testify to this, having suffered from boyhood.

Hope that might give you some relief from something!
Take care,

birdlife wrote:Sorry to hear you have vertigo to add to the list, HM ,

Ditto Birdlife's thoughts, HM. Thinking about you.

Hi birdlife,
I do a similar correction for Morton's toe, which is cutting a rectangular strip of mole foam and placing it under the 1st metatarsal as you described. I have been getting lax about that, it is no longer in all my shoes. But at least now I have permanently got myself in the habit of pronating instead of supinating my feet, which is definitely a better choice!
Thanks to both you & lernica for caring about the vertigo. It is mild really. I have had 2 acute episodes in my lifetime, where I could not stand or walk at all, and it's not like that. As I am now, I have to be careful sitting up and standing up because sometimes I don't take well to the positional changes and just fall right down again. In the beginning I kept forgetting so it took one bad fall to keep me mindful of it. Now that I am remembering to move slow and hold on to something, it's not much of a problem. I get to tell my husband that he makes me swoon

HM, do you know what is causing your chronic vertigo? If you have particles in your middle ear there are treatments for it that are quite effective.

Hi Violet,
from what I have read of tarlov's cysts, headache and vertigo can result...so I am just living with it until I get my tarlov cyst surgery, and then I will look into it as a possible inner ear phenomenon if it doesn't resolve along with the various neuropathies. It is quite manageable as far as chronic annoyances go; I could live forever with the vertigo and the peripheral neuropathies, if the pudendal aspect would just go! So for now I am just going to bank on the one surgery to resolve everything and if it does not meet my expectations, I will take it from there

HM,
I have often seen patients start to fall over after getting up from the exam table after a series of x-rays. I am always careful to stay on their elbow until I am sure they are okay and make them sit down for a minute if it looks like they are having trouble. I have heard that the culprit here is often low blood pressure. When I had my hip resurfaced last year, they continued me on doxasozin which was prescribed by a urologist for urinary urgency and frequency. It relaxes the smooth muscle around the bladder but is more commonly used to treat high blood pressure. My blood pressure has always been moderate/low but the combination of the doxasozin and all the narcotics in the hospital lowered my blood pressure so much that it made it hard for me to get out of bed without falling over. I discontinued the doxasozin and they pumped me full of fluids to get my pressure back up. I spent an extra day there before I could be discharged (costing my insurance another $7000).

Don

HerMajesty wrote:But at least now I have permanently got myself in the habit of pronating instead of supinating my feet, which is definitely a better choice!

Well I'm glad of that HM. I was slightly stuck in the first instance when trying to cut the padding out for my husband, since I've little idea of the size of either a quarter or a half dollar!!
Am glad your vertigo is no longer acute, and I bet your husband believes you about the swooning . Don't tell him otherwise .

Take care,

Hi Don,
I wish my problem were orthostatic hypotension, I've put on so much weight since I started with this PN & meds, I just feel blessed that my BP is not through the roof. Unfortunately this is definitely vertigo; it's not just with going from horizontal to vertical, that's just the time I need to be most careful to prevent injury. My Dad has very low BP (so low it got him rejected for the Vietnam draft, or there would be no me), and does faint occasionally; and when I was a young teen my BP was low enough that I almost fainted once or twice. The experience is different: When I started to fall out from orthostatic hypotension those couple of times, everything started to go black and grainy like I was about to lose consciousness. With vertigo, you can close your eyes while lying still and feel like you are flying around on a tilt-a-whirl; and when I stand up and fall I am totally conscious, I just have no idea which way is up. It's like a fun house ride