Chronic Pain Whatever the cause, support for managing long term or intractable pain.


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Old 09-01-2011, 11:21 AM #1
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Default Hormone Therapy - Preliminary Report

A week or so ago I asked a question about this in the Medications forum - no response. (That's ok. I checked all of NT's archives and there is very little other than bare mention of this topic.) I spent a month or 3 prior to that looking into it after reading several of Forest Tennant's (and others) articles about Hormone Therapy with regard to Chronic Pain.

http://www.practicalpainmanagement.c...tractable-pain

http://www.practicalpainmanagement.c...in-update-2010

http://www.prescription2000.com/Inte...ranscript.html

I Had my adrenal hormones tested per the recommendations in the articles, and I'm below the minimum indices on several of them, which according to Dr. Tennant could possibly indicate adrenal fatigue/exhaustion.

Problem is, that term/condition/syndrome/whatever - "adrenal fatigue" is not recognized, and dismissed by the medical powers that be. (Well, they don't recognize R-Lipoic & ALC for PN either, so....)
http://en.wikipedia.org/wiki/Adrenal_fatigue
(N.B. Addison's disease & Cushing's syndrome have been ruled out)

I asked around, and I got that look they give you - like there's a tree growing out of your head. What the doctors cannot dismiss is that my tested levels of these hormones are quite low, and in a couple of cases, have been for some time.

Anyway, since these adrenal hormones, which can be suppressed by chronic pain, are all derived from a "master/mother" hormone called pregnenolone, and pregnenolone is one of those that I'm low in, it made sense to me to begin there. I also read that the process of converting pregnenolone into these other hormones is fueled by pantothenic acid (vitamin B-5). Most people have enough B-5 from foods and multi-vitamins, but like B-12, it's a water soluble vitamin with no upper limit, and some work is being done with megadosing with encouraging results.

My (and I think Dr. Tennant's) theory is that if I supply my body with the raw materials it needs to mfr. these deficient but essential hormones, it may work out on its own (my ACTH is fine for those who are wondering). So earlier this week I began a conservative regimen of taking 10 mg pregnenolone (sublingual) with 500 mg pantothenic acid (timed release) twice a day.

After just 5 days, I think I'm sensing a change, however I remain conservatively cautious, if optimistic, and I'll be getting retested in a couple of months. If this doesn't work, I still have the option of directly replacing each of the deficient hormones individually, however that entails some risks - moreso than my current experiment.

Stay tuned.

Doc
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Old 09-21-2011, 12:02 PM #2
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Default Update

It's been 3 weeks since I started taking the pregnenolone as described above. The first week, I titrated up to get closer to the 50mg./day recommended by Dr. Tennant, but had to cut back to the original 20 mg./day. Within two days I started breaking out with acne, which indicated it was too much. When I cut back again, the acne disappeared as fast as it appeared. No other side effects except some slight stimulation (like a little too much coffee). To comply with the "intermittant" dosage, I skip weekends, taking it only on weekdays.

I am now confident in saying there has been a worthwhile improvement. My pain levels have decreased noticeably, cognitive functions have improved measurably, energy levels increased, and overall just feeling better (than before taking it), and have started losing weight again (just a couple pounds so far). Family & friends who were unaware of this experiment have noted a positive change. This stuff is by no means any kind of miracle, but keeping in mind I'm low in several of these adrenal hormones, it seems to be doing what it's supposed to do. I'll take what I can get!

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Old 09-27-2011, 11:24 PM #3
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Default Update

It's been about one month. The first bottle of pregnenolone is gone (coincidentally, it was a one-month supply at the dosage I am taking). The label on the bottle says:
Quote:
Do not take for more than 30 days without the advice of your physician,....
so I'm taking some time off until I touch base with my doctor (and more arrives in the mail).

In just a few days, I have noticed my pain levels are rising again - no other effects so far. I am surmising that this is because my levels of the various deficient hormones are slowly dropping again. The plan, as discussed with my doctor, is to repeat the regimen for 3 months and then get re-tested and take it from there.

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Old 11-01-2011, 03:07 PM #4
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Default Update

It's now two months into the pregnenolone + pantothenic acid (B-5) regimen. As I've been taking weekends off, I have about a week's worth of pregnenolone left in the second bottle, but in accordance with the label, I'm taking a few extra days off.

As I surmised in the previous update, when I restarted the regimen after the last break, my pain levels again dropped, energy level and overall mood increased. Cognitive function has further improved incrementally.

It's still early with another month to go before re-testing, and I am curious where my levels of the deficient/suppressed hormones are, but I'm very optimistic. Depending on the results, I'll discuss with my doctor either continuing the current regimen or decreasing the pregnenolone to a lower "maintenance" dose.

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Old 11-12-2011, 10:46 AM #5
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Default to Dr. Smith

I read all the articles you posted on the pain forum. thank you for providing that. I do all the correct things mentioned for my pain control, and I am overly candid with my pain doctor. Completely honest, and fear of the pain can make you do that for sure. Maybe that is why he is not overly concerned about me. I just read so much that is scarry about this drug, and I do not want to up and up the dose and have some mental problem with it. I want to go down, so that there will be help if I should need it in the future. He knows this. Treating this pain has been the most difficult part of my cervical problems, and that includes surgery. Keep posting about pain, I need all the articles you send to us. I will read all of them. ginnie
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Old 11-12-2011, 11:45 AM #6
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Quote:
Originally Posted by ginnie View Post
I do all the correct things mentioned for my pain control
I can tell that you do. Discussion forums are an imperfect means of communication, prone to miscommunication of every sort, but the best we have despite their foibles. When I post something to a public forum, I'm assuming everyone can read it (because they can ), so I try to do it in a general informative way (even when I fail miserably, and I do). I don't ever mean to talk down, or be condescending, to anyone, and if I've ever appeared to do that, I am truly sorry.

If/when I have something to say to just one poster, I do it via PM.

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Old 11-13-2011, 10:38 AM #7
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Default Re: doing great

You do great Dr. Smith. You do the research and present it to us. Couldn't ask for more. I appreciate your responces to the forum alot. When you deal with pain, one can never be too carefull with the medications. I have a healthy respect for the med. I am on and have no wish to upset the apple cart. I also insist on good communication with my pain specialist. I don't think it could be done any other way. Ginnie
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Old 11-13-2011, 12:54 PM #8
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Quote:
Originally Posted by ginnie View Post
I have a healthy respect for the med. I am on and have no wish to upset the apple cart.
That's exactly why I'm not concerned about your having any future problems - not one iota. Healthy respect = good; worry/fear = not good. So please (try to) put the worry & fear on hold, and instead enjoy the quality of life the med. is affording you.

Quote:
"I don't think of all the misery, but of all the beauty that still remains." - Anne Frank
Quote:
"No matter how old you are, there's always something good to look forward to." - Lynn Johnston
Quote:
"With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy." - Max Ehrmann
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Old 12-01-2011, 11:54 AM #9
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I stumbled upon this post you made and am battling burning allodinya pain in my neck and upper back. My neurologist diagnoisis is SFN, My Pain Dr. is saying a neuralga. Here is a link to my story.
http://neurotalk.psychcentral.com/thread159222.html

I have had every blood test under the sun but never knew to get my harmones checked, so I did.


My Thyroid Profil, Cortisol, and other harmones were all good based off what you recommend to get checked.

My Pregnenolone, 21 was low. Range was 23-273.
My Testosterone was in range 168 Range 160-726
but on the low side. I am 39 years old.

I am on lyrica 225mg going up to 300mg in next week.
What advise wdo you have for me?
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Old 12-01-2011, 04:27 PM #10
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Quote:
Originally Posted by bent98 View Post
What advice do you have for me?
First, don't do anything I suggest without researching it yourself and running it by, and with acknowledgment of, your own trusted doctor(s).

I read the entire thread, and got 3 impressions, most of which have already been expressed.

1. It sounds like it could be viral due to the changing symptoms and moving around. An oversimplified analogy would be a virus cold that begins in the sinuses with congestion/runny-nose, then moves down causing sore throat/laryngitis, and continues down into the chest where it lingers the longest with coughing & stuff in your lungs. Viruses can do really crazy things. Just out of curiosity, did this whole thing start during or just after your having a virus? Have you ever had Epstein-Barr virus (mononucleosis) even as a kid/teen?

2. I know your cervical MRI didn't show anything, but that area (c5-c7) is where a lot of my problems are, and some (the burning pain in the neck & between shoulder blades) are somewhat familiar. A lot of nerves branch out in that area (odd that c7 doesn't even show up on that dermatome chart) so I wouldn't be surprised if something there was missed, has changed (this has been going on for a couple/3 years now, right?), or just didn't show up at all for some reason.

3. I also have severe osteoarthritis and bone spurs throughout my spine, and again, the burning pain in the same regions (though I do not have the skin sensitivity). When I was in my mid 40s, they told me I had the spine of a man in his mid 90s.... whoopie. Do ant-inflammatories have any effect on your burning?

You had some questions about RLA. I know it seems logical that you should take half of the ALA dosage, but for some reason, the ratio works out just as well with 1/6. I started taking 100 mg./day (RLA) almost a year ago for the burning (feet) of PN. My results were not typical, but the burning stopped virtually completely within 48 hrs., and hasn't returned (unless I do something stupid to aggravate it). A few months ago, when I began taking the pregnenolone, I added the pantothenic acid (B5) and got further improvement in the PN pain. I'll take it.

Since you're low on pregnenolone (like I was) and that's the mother hormone of all the others, it might make sense for you to start there like I did, along with B5 to fuel the process of turning pregnenolone into whatever in-between steps your body needs, all the way up to the testosterone.

Read Dr. Tennant's (4) articles:
http://www.practicalpainmanagement.c...-pain-patients

http://www.practicalpainmanagement.c...tractable-pain

http://www.practicalpainmanagement.c...in-update-2010

http://www.prescription2000.com/Inte...ranscript.html

then go on to NIH, Mayo, and any others you can find (sorry I don't have URLs handy...)

As I mentioned early in this thread, most doctors aren't accepting the idea of adrenal fatigue/exhaustion
http://en.wikipedia.org/wiki/Adrenal_fatigue
but since your cortisol levels look ok, I wouldn't even go there. You're somewhat low in pregnenolone and testosterone (though not critically so) run those by your doctor with the articles (if he'll read them or look into it) and see if s/he'll help guide you through trying this for a few months. You might need to see an endocrinologist, who may do some more/different testing with some different ideas.

There are articles that caution about taking pregnenolone, and they're right. I found the dosage recommended by Dr. Tennant too high for me, so I started much lower and titrated up. As it turns out, this is pretty easy to do because this stuff converts in only a matter of hours (and is gone quickly too). Also, the articles I saw that cautioned against it were talking about people with normal levels taking it for "fountain of youth" purposes - not people who were deficient and supplementing/replacing very low levels. Big difference.

Doctors usually want about 3 months between tests for a lot of bloodwork to see if (whatever) is working, and that should be about right here to. If it's going to help, you'll probably know within the first week or two (though things will taper off as your levels come up).

In your other thread you wrote:
Quote:
It's difficult to keep reading and researching as it stresses me out so much, just the same way going from Doctor to Doctor in hopes to find one that may see something that the others haven’t. It's so mentally draining and it’s been an emotional rollercoaster ride for my wife and me.
....
I hope one day I can get to a point where I can mentally and physically with my pain to be able to help others find the right doctors and give them encouragement. Unfortunately, I am not at the stage yet as I get depressed and scared during different parts of the day as not truly being diagnosed with what is causing my pain is downright horrendous.
These words could have been written by me or countless others I've met on my journey. I once dubbed the feeling as "guinea pig complex" - being bounced from specialist to specialist, test to test, treatment/therapy to treatment/therapy... you feel like nobody knows squat and you're just their latest lab rat (sometimes we are; that's how they learn). Then I looked it up online, and found out about a dozen other folks had all thought they came up with it too... There's some truth to it; there's more that doctors/medicine don't know than they do know, but they still know more now than ever before, so what else can we do?

I've found this enlightening too; maybe you've seen it in another post:
http://www.medpagetoday.com/Blogs/21266?

Google: stages of grief and read a few articles, cuz that's what we're all going through here. Life-changing events we never expected, would never want in a zillion years, but we're stuck with them. Bleah.

I'm a little at the stage you want to be in in the second paragraph; I was preaching/practicing "pay it forward" decades before that movie came out. But I still get depressed and scared for the same reasons as you. Doing what I can - whatever I can - is one of the ways I distract myself from the dark side, and deal/cope with it all.

HTH,

Doc
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