Pudendal neuralgia and other neuropathies

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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
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Re: Pudendal neuralgia and other neuropathies

Post by Violet M »

You can go to this thread on savella: http://www.pudendalhope.info/forum/view ... f=25&t=542
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
manon13

Re: Pudendal neuralgia and other neuropathies

Post by manon13 »

Thanks for your messages! I was concerned it might be Lyrica but had not thought about amitryptiline because it looked less dangerous and I am taking very little.
It is very possible that it is the real cause, I now hope!!
Also because I have developed rapid heart beat recently as well.
Unfortunately as soon as I started reducing the amitryptiline dose gradually, I have had a big flare up of PN pain that blocked me in bed for days. it might just be a coincidence, but I am back on the full dose now.
Will try again to stop as soon as things calm down (if they ever do...).
It's interesting to see that a drug used to treat nerve pain can cause neuropathies.
drds89
Posts: 18
Joined: Tue Oct 19, 2010 2:52 am

Re: Pudendal neuralgia and other neuropathies

Post by drds89 »

Pamelor (nortriptyline) has less side effects than Elavil (amitriptyline) overall, but maybe not quite as effective-- though nortriptyline is what amitriptyline is converted to in the body as the active metabolite. Less dry membranes (why I changed, nosebleeds/irritation), constipation, sedation and rapid heart rate, but the weight gain is about the same. Dosed about the same under 50mg. Both are great for neuropathies, migraine prevention, fibromyalgia, IBS, insomnia, adjunct for depression (have to use high doses for antidepressant effect), etc etc. I always use Pamelor in the geriatric population or those with cardiac issues, over Elavil. Even if you can only tolerate 10mg of either, over time I think it is worth staying on, unless the side effects are just not worth it.

Yes, each individual is JUST THAT re: drug-drug interactions, so your physician(s) need your help in doing some due diligence yourselves, without becoming excessively paranoid about the package inserts (which, if you read enough of them, you see the pattern of legalise mixed in with the medical).

Savella is the latest and only one of a few drugs officially approved for fibromyalgia (Lyrica, ?Cymbalta,too). I have only prescribed Savella twice, and is very very $$$$$; hard to get approved. Another patient took it from a Rheumatologist for severe FM, but nausea limited her use. So not a lot of experience to offer here, sorry.
Fell skating 2008. Abnormal PNMLT R perineal branch 12/08. Pudendal block +relief for several hours. Complete recovery, off medications, using cushion after 9 months; re-injured late 2009 doing yardwork. Major flare after injections 2&3 Feb. 2010. No sitting/hyperprotecting since 2/2010 to present. Symptoms gradually better, but not like the first time; still with pain up to 5, but 1-3 most common and 0 while recumbent.
JRS
Posts: 26
Joined: Tue Feb 22, 2011 10:54 pm
Location: Ohio

Re: Pudendal neuralgia and other neuropathies

Post by JRS »

Does anyone know if Pamelor comes in a topical cream?
Symptoms started 7/2010 following Cellulitis infection
Hysterectomy 11/08 due to fibroids/4 child births
Rt Leg Obturator & Piriformis Pain
Sacral Pain
Current Medications: Lidocaine 5% Patch, Baclofen,Tramadol, Xanax
Topical Amitriptyline/Gabapentin Compound as I am not tolerating systemic treatment
Under Pain Management Care, Seeing a PN therapist (8 visits to date)
PN Block via CT Guide (3/11)
(2) ESI Trigger Point Injections (4/22/11)
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Pudendal neuralgia and other neuropathies

Post by Faith »

manon13 wrote:Hello,
I have developed pudendal neuralgia 8 months ago and in the last month trigeminal neuralgia (face pain) has started as well. I also have pins and needles all over my body. Doctors so far say it cannot be medication (lyrica and amitryptiline) but more likely a form of central nervous system sensitization. Has anyone experienced somthing similar?
Yes, I was told I have central sensitization as well. I had burning tingling in my hands/feet for a while, but once I got up to higher doses of Neurontin (2400mg) that got better. I do suffer from widspread myofascial pain that doctor's say is a result of CNS sensitization as well. I took amitriptyline (then switched to desipramine), but couldn't continue due to fast heart rate. I have to say I felt better once I got off it and just increased the Neurontin, but everyone is different when it comes to meds. I know someone with PN (not on this forum) who also has trigeminal neuralgia. She actually had the TN before the PN. She takes Cymbalta for the TN, but it doesn't help her PN.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
manon13

Re: Pudendal neuralgia and other neuropathies

Post by manon13 »

thank you faith. very helpful. my problem also started after a SIJ manipulation. Dr Beco told me they are very dangerous.
I have tried to go off Elavil but had a major pudendal flare-up so immediately went back...Not sure what to priviledge...
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Pudendal neuralgia and other neuropathies

Post by donstore »

Nortryptelene gave me RAPID heartbeat and tingling in extremities. As my signature says, the addition of Lyrica has been quite helpful with minimal side effects.

Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Pudendal neuralgia and other neuropathies

Post by Faith »

manon13 wrote:thank you faith. very helpful. my problem also started after a SIJ manipulation. Dr Beco told me they are very dangerous.
So sorry to hear that. It's very frustrating that something you think will help you ends up injuring you, isn't it? How did they do the SI manipulation? Mine was done while lying on my side. I wrapped my legs around the PT and then she pressed my pelvic together while I resisted. I didn't know anything about SIJD at the time. I have been since told my a physiatrist and 3 PT's that that sort of manipulation is called "high velocity" and can be dangerous because of the way they have you hyperextended. I really feel my problems started or at least were GREATLY worsened from that expereince.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
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