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Old 06-17-2010, 09:53 PM #11
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It really depends on what nerves have been affected by the Peripheral Neuropathy and what triggered it...

In my case, it was not a progressive event, but happened within 4 days of a bad sacrum adjustment when my feet started to burn like hell and sexual functions also became affected, all in the same time frame...

Because this is clearly a PN related issue, I thought it would make more sense to keep the thread where it is, in the PN niche...

Quote:
Originally Posted by dahlek View Post
Essentially because when one has severe PN they're thinking about ***?
Maybe I AM on the wrong planet? Because PN pain usually puts one out of any sensory 'circles' and thus you don't FEEL!
Am I confusing things here? That first: You have PN PAIN [And not in the Penis?] and Secondly that you are having some difficulty in the latter area?
Do check out this forum on our boards... it's not neuropathically related, but, maybe better related to your problems: http://neurotalk.psychcentral.com/forum114.html

Just click on the 'blue'.... for good stuff there.

I hope you find just what you need, that helps you. Truly, and keep hopeing for whatever? - j
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Old 06-18-2010, 08:01 AM #12
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If you are offering advice to us, thank you !

*edit*

Being in pain from PN, is so overwhelming that one can think of
little else, especially not sex, until the pain problem is solved.
For some of us, we have searched long & hard and fired many doctors
to get to the point of relief where we can lead 'normal' lives.
Many of us cannot, but we try very hard. For some of us this has been a quest of years, not weeks or months, to find the right meds & supplements.
We come here for advice, comraderie & support.
We are leery of 'snake oil' remedies and their testimonials.
So if you have come here to give your advice, thank you - again.
But do not be surprised at the disbelief, we've been around the block a few times.
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Last edited by Chemar; 06-18-2010 at 11:34 AM. Reason: NT guidelines
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Old 06-18-2010, 08:51 AM #13
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This is from the iherb link:

Quote:
(State of California Prop 65) This product contains a chemical known to the State of California to cause birth defects or other reproductive harm.
I am now going to have to see which of these ingredients is the culprit.

Yohimbine: from http://healthlibrary.epnet.com/GetCo...chunkiid=21892
(iherb's link to the Natural Pharmacy)
Quote:
Safety Issues

The following discussion applies to the drug yohimbine, rather than the herb yohimbe. All risks of the drug apply to the herb, and there are additional risks to consider as well. For example, as noted above, the amount of yohimbine in a given sample of the herb may not be accurately reflected on the label.16 Furthermore, additional constituents contained in the herb besides yohimbine might present unique (and unknown) risks of their own.

Yohimbine in any form should not be used by pregnant or nursing women, or those with kidney, liver, or ulcer disease, or high blood pressure. Intake of more than 40 mg a day of yohimbine can cause a severe drop in blood pressure, abdominal pain, fatigue, hallucinations, and paralysis. (Interestingly, lower dosages can cause an increase in blood pressure.) Since 40 mg is not very far above the typical recommended dose, yohimbine has what is known as a "narrow therapeutic index." This means that there is a relatively small dosing range, below which the herb doesn't work and above which it is toxic.

Even when taken in normal dosages, side effects of dizziness, anxiety, hyperstimulation, and nausea are common.

Finally, yohimbine may interact adversely with numerous medications, including tricyclic antidepressants, buproprion, methamphetamine, phenothiazines, clonidine, and other drugs for lowering blood pressure.5-14,17
This is a more comprehensive link with side effects listed:
http://www.webmd.com/vitamins-supple...HIMBE&source=2

Tribulus has these warnings about regular use and prostate health:
http://www.webmd.com/vitamins-supple...+VINE&source=3
But it might be the Tribulus and prostate effects.

There is a warning concerning Ashwagandha extract and the thyroid. I wonder why this is in this product, in fact.
http://www.webmd.com/vitamins-supple...ANDHA&source=0
Since this product increases the immune system, it would not be a good choice for PNers with immune mediated PN. This herb is typically contraindicated for MS and MG.

I could not find which ingredient is not approved by the State of California at this time.

It is a good idea to research herbal products before taking them.
Herbs can be complex, and act as drugs, and interact with other drugs you may be taking. Research the manufacturer and make sure the herbs are tested for impurities before they are used to make any product. China and India have had reports of contaminated products over the years. Lead is the usual culprit, but China has been known to lace their herbal extracts with REAL drugs! So beware of Chinese sourced products.
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Old 06-18-2010, 09:02 AM #14
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*edit*

So far, I have discussed, Zostrix, Salonpas patches, Capzasin, Biofreeze, TPR 20 and Yohimbe-Plus as products I was testing for my PN or that I tried and could recommend: can you see a common link/manufacturer there?...

I have also mentioned Iherb, as have many others, because they have the most user-friendly Website, excellent prices and the cost of delivery by DHL to the Caribbean, where I live, is discounted some 70%: $10.00 for a 5 pounds package was the latest...

I have also stated that my pain was in the 5 to 7 range, which allows me to function fairly well, except when it comes to standing up and walking for more than a few minutes. As long as I remain mostly seated and use topical pain management, the pain is bearable, but I am looking for a solution based on natural products to allow me to resume traveling...

I like a little color to liven up my posts and emphasize certain points: sorry if I still have a youthful spirit and like sex, in spite of 14 years of Peripheral Neuropathy and having turned 64 this past 15th June...

I have come here to learn about pain management and share whatever I have learned in the process, that might be useful to others, hence the test on the Menthol/Capsaicin cream, for instance...

*edit*

Quote:
Originally Posted by nide44 View Post
If you are offering advice to us, thank you !

**

Being in pain from PN, is so overwhelming that one can think of
little else, especially not sex, until the pain problem is solved.
For some of us, we have searched long & hard and fired many doctors
to get to the point of relief where we can lead 'normal' lives.
Many of us cannot, but we try very hard. For some of us this has been a quest of years, not weeks or months, to find the right meds & supplements.
We come here for advice, comraderie & support.
We are leery of 'snake oil' remedies and their testimonials.
So if you have come here to give your advice, thank you - again.
But do not be surprised at the disbelief, we've been around the block a few times.

Last edited by Chemar; 06-18-2010 at 11:34 AM. Reason: NeuroTalk Guidelines
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Old 06-18-2010, 03:55 PM #15
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Thanks for reviewing in some details the potential contra indications and side effects of these herbs...

The formulators of Yohimbe-Plus had a wide range of herbs and plants with broadly similar actions on the sex organs from which they could have chosen, so as to eliminate those that have potential side effects: for nstance, Catuaba would make a good substitute for Yohimbe. Most of these plants are found in South America, particularly in the Amazon, according to the Rain Tree database...

http://www.rain-tree.com/plist.htm

Before the post was edited for copyright issues, I had pasted a short description of the properties of each plant to avoid cluttering the post and save reading time. The first 5 plants are all libido enhancers and are linked to their detailed description in the Rain Tree database, a site well worth a visit...

- Catuaba:

http://www.rain-tree.com/catuaba.htm

- Suma:

http://www.rain-tree.com/suma.htm

- Chuchuhuasi:

http://www.rain-tree.com/chuchuhuasi.htm

- Maca:

http://www.rain-tree.com/maca.htm

- Velvet Bean Plant:

http://www.rain-tree.com/velvetbean.htm

The last 2 plants are included in this list for their properties to relieve pain and inflammation:

- Pau D'Arco:

http://www.rain-tree.com/paudarco.htm

- Copaiba:

http://www.rain-tree.com/copaiba.htm

Finally, if you still use sugar substitutes, such as Aspartame (a Google search on Aspartame + cancer is very instructive...), I suggest checking out:

- Stevia:

http://www.rain-tree.com/stevia.htm

Interestingly, many of these libido enhancing plants also have a beneficial effect on the nervous system, including the ability to mitigate pain and inflammation...

Quote:
Originally Posted by mrsD View Post
This is from the iherb link:

I am now going to have to see which of these ingredients is the culprit.

Yohimbine: from http://healthlibrary.epnet.com/GetCo...chunkiid=21892
(iherb's link to the Natural Pharmacy)


This is a more comprehensive link with side effects listed:
http://www.webmd.com/vitamins-supple...HIMBE&source=2

Tribulus has these warnings about regular use and prostate health:
http://www.webmd.com/vitamins-supple...+VINE&source=3
But it might be the Tribulus and prostate effects.

There is a warning concerning Ashwagandha extract and the thyroid. I wonder why this is in this product, in fact.
http://www.webmd.com/vitamins-supple...ANDHA&source=0
Since this product increases the immune system, it would not be a good choice for PNers with immune mediated PN. This herb is typically contraindicated for MS and MG.

I could not find which ingredient is not approved by the State of California at this time.

It is a good idea to research herbal products before taking them.
Herbs can be complex, and act as drugs, and interact with other drugs you may be taking. Research the manufacturer and make sure the herbs are tested for impurities before they are used to make any product. China and India have had reports of contaminated products over the years. Lead is the usual culprit, but China has been known to lace their herbal extracts with REAL drugs! So beware of Chinese sourced products.

Last edited by Seagem; 06-19-2010 at 01:35 PM. Reason: had to edited copied text as that website has strict copyright
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Old 06-18-2010, 03:59 PM #16
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Have you ever tried the Duragesic Patch (generic is Fentanyl Transdermal System - a tad cheaper) for your pain? Worked for me after it was titrated.
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Old 06-18-2010, 04:16 PM #17
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Not yet, but it has a much better rating of 3.9 on the "Ask a Patient" Website, compared to 2.7 for Lyrica, which I stopped taking after 2 weeks, even though it did a decent job of managing the pain...

Duragesic: http://www.askapatient.com/viewratin...name=DURAGESIC

Lyrica: http://www.askapatient.com/viewratin...23&name=LYRICA

Reading patients reports is really what decided me to dump it, rather than sit it through and hope that the vision blurring, bloating, weight gain, water retention in feet and other sundry side effects would eventually go away...

Of course, the doctor argued that these reports are weighted to the negative side, which is likely correct, but they're still very relevant when medicines are compared to each other with a point system and the same bias...

Please, tell me more how it worked for you and how the "titration" was done...

Quote:
Originally Posted by DanP View Post
Have you ever tried the Duragesic Patch (generic is Fentanyl Transdermal System - a tad cheaper) for your pain? Worked for me after it was titrated.
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Old 06-19-2010, 10:52 AM #18
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Seagem, I've had painful sensory PN since 1988 with moderate to severe pain at the 7 to 9+ levels on the Mankoski pain scale. These levels of pain are horrific and I don't know how I maintained my sanity for all those years. I'm affected from the shoulders to fingertips and from my hips to toes. The worst of the pain is from mid calf to toes in both legs and the pain in those areas are constant 24/7 without letup. I tried all the meds the Neuros rxed without success...later including Lyrica.

Finally, in Jan 02 my PCP (of all people) asked if anyone had tried me on the Duragesic Patch and my answer was no. So, on 9 Jan 02 we started the 50 strength patch and the result was minimal. On 4-10-02 we went to the 75 strength patch and for the first time I felt some relief but not enough so on 11-18-02 we raised it to the 100 strength patch and within 48 hours my pain was reduced to the 2 - 4 level! After all those years the 2 to 4 pain level was, to me, being almost pain free and my life literally changed as a result of this med and the titration by my doctor. However, the pain began to rise so on 1-19-07 we raised the patch strength to 125mcg changing them ever 72 hours and again the pain dropped back to the 2 to 4 levels and on 4-27-07 we began changing the 125 strength patches (1 100 strength patch and 1 25 strength patch) every 48 hours...and my pain levels are still at the 2 to 4 range and this is where I remain today!.


So, for me, the titration of this medication coupled with the patience and understanding of my Internist has been my salvation from the worst of this damnable pain. It's still at the 2 to 4 level but it's been so many years now I pay little or no attention to it. The fentanyl in these patches is a strong narcotic but I have tolerated it well and I am not addicted. Dependent, yes but not addicted and there is a huge difference in the two. My head is clear, my hands are steady, and I have full control of all my faculties. I drive my car without incident - have made several cross country trips and I drove every mile of them. I walk most every day for a mile or two with only the use of my cane and consider myself extremely fortunate. I am now 78 years old and will stay on this medication till I die or something better comes along...maybe a cure? (I'm not holding my breath. LoL)
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Old 06-19-2010, 11:54 AM #19
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This may sound odd but, being on a mixture of lyrica and neurontin has increased`my libido
My dosage is around 900mg neurontin at the moment , have been titrating between the 2 and have found neurontin a bit more user friendly. My pain scale is around 2-3 on this dose. I think the chemical reaction can either inc or decr Libido depending on the person. Eg Tiger woods used a powerful sleeping tablet to enhance his libido, how on earth did that work? ive tried it for sleep and has horrible side effects. Nortyplyine was the worst, had no interest so stopped that one.
When I was in hospital they put me straight on 300mg lyrica and 25 mg Nortriptoyline. I couldnt feel a thing at all, totally pain free and could of played a round in the world cup however it also disconnected whatever sends the signal from the brain to penis Obviously age ( im 50 ) nerve damage and dosage will effect sex life. Im a bit fortunate living in Thailand as you dont need a precription for any nerve drugs here, also 100mg viagra gel original from the chemist is $1 a sachel if needed
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Old 06-19-2010, 01:51 PM #20
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Woww Dan, this is some serious pain you have had to overcome: have you found out what triggered the Neuropathy and is it worsened when drinking alcoholic beverages?...

I ask because I have recently given up drinking a few daily glasses of wine but I'm still not sure it makes any difference...

I see that you have had a good 4 years run without upping the strength of the patch and that the pain is responding well to small increases in strength and/or to the shortening of the application time...

By all accounts I have read so far, Fentanyl seems to give the best results for the least amounts of side effects and I will certainly bear that in mind if my PN pain develops to the extent of yours...

Btw, how large is the patch and where do you usually apply it?...

Quote:
Originally Posted by DanP View Post
Seagem, I've had painful sensory PN since 1988 with moderate to severe pain at the 7 to 9+ levels on the Mankoski pain scale. These levels of pain are horrific and I don't know how I maintained my sanity for all those years. I'm affected from the shoulders to fingertips and from my hips to toes. The worst of the pain is from mid calf to toes in both legs and the pain in those areas are constant 24/7 without letup. I tried all the meds the Neuros rxed without success...later including Lyrica.

Finally, in Jan 02 my PCP (of all people) asked if anyone had tried me on the Duragesic Patch and my answer was no. So, on 9 Jan 02 we started the 50 strength patch and the result was minimal. On 4-10-02 we went to the 75 strength patch and for the first time I felt some relief but not enough so on 11-18-02 we raised it to the 100 strength patch and within 48 hours my pain was reduced to the 2 - 4 level! After all those years the 2 to 4 pain level was, to me, being almost pain free and my life literally changed as a result of this med and the titration by my doctor. However, the pain began to rise so on 1-19-07 we raised the patch strength to 125mcg changing them ever 72 hours and again the pain dropped back to the 2 to 4 levels and on 4-27-07 we began changing the 125 strength patches (1 100 strength patch and 1 25 strength patch) every 48 hours...and my pain levels are still at the 2 to 4 range and this is where I remain today!.


So, for me, the titration of this medication coupled with the patience and understanding of my Internist has been my salvation from the worst of this damnable pain. It's still at the 2 to 4 level but it's been so many years now I pay little or no attention to it. The fentanyl in these patches is a strong narcotic but I have tolerated it well and I am not addicted. Dependent, yes but not addicted and there is a huge difference in the two. My head is clear, my hands are steady, and I have full control of all my faculties. I drive my car without incident - have made several cross country trips and I drove every mile of them. I walk most every day for a mile or two with only the use of my cane and consider myself extremely fortunate. I am now 78 years old and will stay on this medication till I die or something better comes along...maybe a cure? (I'm not holding my breath. LoL)
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