Gabapentin and amiltryptlne for Pudendal Nerve pain WARNING

[hoopwhirl2007]

Hi, I have been suffering with Pudendal Nerve pain for over 7 years and am taking Gabapentin and Amiltryptlne to help with the pain. I went to see my doctor today for another medical issue and I asked him a question about my medication I regularly take. He told me that recent studies have proved that long term taking of Gab and Amil causes Dementia,! I was horrified and decided now to wean myself off these 2 drugs. Only prob is I need something else to relieve the pain. I am now contemplating looking for exercises to replace the use of drugs. Does anyone have any good experiences they can share with me for good pain relief exercises for P N/PNE? Many thanks xxx

[kalecolbe12]

I know this isn't what you asked for but I was wondering if you thought about trying Cymbalta low dose.... It helps me a lot but then again I'm 68 so I don't care if I take it long-term and I was wondering what your dose of Gabapentin was I take only 200 mg at night and a 30 mg of Cymbalta in the morning... My pelvic floor therapist help me do exercises stretching which is happy baby pose which really helps

[hoopwhirl2007 in reply to kalecolbe12]

Thanks for your reply. I am taking 1200mg Gab plus 10mg Amil. Doc told me any drug used for nerve pain had the dementia scare attached to it. Is cymbalta a nerve pain reliever? I am 67 and I am concerned about long term use of these drugs. I want to live for many more years yet! Wishing you lots of luck xx

[Konagirl60 in reply to hoopwhirl2007]

Cymbalta is not a good choice. You can read about it. There are long term problems it causes.

[hoopwhirl2007 in reply to Konagirl60]

Thanks for your valued advice xx

[hoopwhirl2007 in reply to Konagirl60]

Thanks, I need to know the dangers attached to these drugs so thanks for your advice xx

[Miriam123 in reply to hoopwhirl2007]

If you decide to discontinue these drugs wean yourself off very slowly to avoid withdrawal symptoms.

[Buuldog]

This information is not new it has been suggested for some time that long term use of these medications might result in dementia, maybe it has only just been proved !! I think long term is the key however many doctors just keep prescribing these for years. I was given Gab 3 years ago and stopped taking them after reading about the connection with dementia. I only take Tramadol but these have also had some bad reports, thing is you only take when needed with Gab you have to take it every day.

[hoopwhirl2007 in reply to Buuldog]

Hi Buuldog, thank you for your response. It is so difficult knowing what to do for the I am at my wit's end after 7 years of Pudendal pain. I hope I can find am exercise programme which will relieve the pain rather than use meds or perhaps something holistic. Good to luck to you anyway xxx

[Buuldog in reply to hoopwhirl2007]

I am in the same boat always looking for something that will help, I have drawn a complete blank with doctors and my GP only this week said that I should just accept that this is it !! As you will appreciate this is a depressing prospect, but the fact is that here in the UK, they have nothing to offer other than the medications that we all know about and for most of us they only take the edge off at best but come with lots of negatives.

[hoopwhirl2007 in reply to Buuldog]

I totally agree with everything you say. My GP on 9ne of my many visits said "I'm so glad you do your research about this because I haven't got a clue!!". Doesn't give us much hope does it?

[pizon]

hello…I have had p/n now for 5 1/2 years….was misdiagnosed for 2 of them..I tried all meds about 8 different ones and EVERY ONE gave me side effects..I did find yoga and meditation these are the only things that help me….a dvd titled “Your Pace yoga reliving pelvic pain” by Dustine Miller….watch it before you do it and go slow…this has helped more then any thing else..when I finish the yoga I meditate for at least 15 mints….a book I have read “Healing Pelvic Pain” by Amy Stein I also take Valerian root and Hops in capsule form 2 of each up to 3 times a day …I truly hope this helps you as it has me …when I researched all the different meds that were given me I found the long term effects were more dangerous then the p/n pain…with that being said I still have discomfort however am able to live a full life..there are some things I am mot able to do like riding a bike….sitting on a hard chair…but scince I have been doing the yoga I am able to sit for longer periods….feel free to contact me Wisjing you many blessings

[hoopwhirl2007 in reply to pizon]

I have read your repmy with great interest and I will be checking out the info you have supplied for me. Fingers crossed xxx

[Colombe in reply to pizon]

I've just bought the Amy Stein book so good to know it was useful. I'll check out the yoga also. If you are in the UK, where do you source the valerian root and hops - any particular brand? Any help appreciated. Thanks!

[Kirsihannele in reply to pizon]

Can you please tell which mark, product or manufacturer's valerian root and hops in capsule you use. I have looked them up in web shops but don't know which are good. I live in Europe, Spain. Here it's Valeriana y Lúpulo en cápsula.

[pizon in reply to Kirsihannele]

I use the Now brand valerian root 500 mg. Hops flowers is Natures Way 620 mg…..I get them from Amazon I am in the States I will enclose a photo for you

[hoopwhirl2007 in reply to pizon]

Did you find these helped with your pain? I'll try anything. This PN affects my life so much. We haven't been able to fly for 7 years now because of me being unable t to sit for long periods. I will check these out on Amazon. Thanks for your response.

[pizon in reply to hoopwhirl2007]

yes they do help with my pain with the yoga and meditation…I use medical marijuana for sleep…I still do not travel I can’t sit for more then 3 hrs at a time…before using the above I was not able to sit at all…I no longer see a dr. For my condition I found they only made it worse I will never be 100% and have learned to live around it but I can live now befor while seeing one dr. After another I couldn’t hardly get off the sofa…so yes I am better and thankGod I was able to find some relief I hope this helps you as well

[egoose]

I have used Lyrica which gave me some relief. All drugs have side affects.

I have a friend who has been on gabapentin for many years due to TMJ at a very high dose of 2400mg/day with minimal side affects. “Healing Pelvic Pain” by Amy Stein is an excellent read with many good exercises.

Good luck.

[hoopwhirl2007 in reply to egoose]

Thank you for replying and offering your advice. I shall order the book you mention. Kindest regards xxx

[Konagirl60]

I’ve been using Nortriptyline and Amytriptyline for over 14 years. I had pudendal nerve entrapment. It was serious. The nerve was compressed in three spots. I eventually had the decompression surgery I needed four years late in 2011.

At one point I was poly drugged with many meds of which none really worked except fentanyl duragesic patches given to me in early 2011. The patches only rid me of 25% of my pain.

Post op 12 years and I only use Amytriptyline at bedtime ( 50mg ) and a sleeping pill.

Your dose is very low. I’ve found Lion’s Mane powder added to my morning weak coffee with cacao has perked my brain back to normal. You might like to consider it. BTW, I’m 65 years old.

[hoopwhirl2007 in reply to Konagirl60]

Thanks for your interesting response. I really want to come off these drugsasap. I was diagnosed with MS in 2009 and although the MS is not giving me much trouble, I fear that 8n the future I may not be as mobile as I am now and what will happen when I have to sit for longer periods? Worries me so much. I'm 67. Xx

[Konagirl60 in reply to hoopwhirl2007]

Do you sit on a donut cushion? You simply can’t stand up all day at that age.

Perhaps a good pain patch might help. I wore them for years. Pre-op I used capsicum patches on my anus and buttock and now I use icy cold if I’m sitting for longer periods of time.

Can you lie down pain free?

I hope you find an alternate mode of pain relief. Exercises never helped me with my PN.

[OrchidKoi15]

Oh my gosh! I finished 6weeks of pudendal nerve injections at Pelvic Rehabilitation medicine in chicago. Helped alot. I had to be patient but it really helped. They even prescribed valium,baclofen suppositories to use vaginally or rectally that helped as well. Insurance is now taken too so it's great. The drs are super caring and down to earth and they also recommend other things if you need as well, drs, therapies etc. They recommended a urogynecologist, I've seen 2 prior, and he diagnosed endometriosis with a displaced cervix. I have surgery end of February. Finally one answer in my life. Good luck!

[hoopwhirl2007 in reply to OrchidKoi15]

I read your reply with interest. It appears that the State's have far more experienced docs and medics than the UK. None of our docs know anything about PN probs and just throw meds at us rather than trying to understand how to put the matter right. We only have so called specialists in 2 cities and their fees are astronomical. I saw a specialist in Bristol who gave me nerve blocking injection and this did not work. The cost of travel, hotel expenses and specialist fees was well over ,,£1k which I cannot afford to keep paying for just to get negative results. Good luck with your surgery in February xx

[OrchidKoi15 in reply to hoopwhirl2007]

It's so aweful what hoops we have to go through to get help. Do you have pain clinics or pelvic floor therapists?

[hoopwhirl2007 in reply to OrchidKoi15]

We have pain clinics and women's health clinics but I don't have much faith in them because both gave me exercises including lots of deep squats which is the worst thing to do when having PN!

[OrchidKoi15 in reply to hoopwhirl2007]

Ugh that's aweful. The injections I got were the first 2 steroid and lidocaine, the next were saline and lidocaine. It to about 2-3months after 6 treatments to finally feel relief. I had internal and external pelvic floor therapy which I died from. I will have to restart after surgery and find a biofeedback person for my rectal problems. I really hope you can find relief. I take gabapentin 1200mg at night and 600in am. I dont feel like it works any more. I take tramadol or tylenol 3 for pain and ativan for panic. I'm so sorry I know how bad it sucks. I was recommended cushions by cushion lab. They are expensive but the donuts make. My sciatic flare. Also intimate rose pelvic wand for doing therapy myself. Might help to put on pudenedal area. Get the vibrating one.

[Pollywobbles in reply to OrchidKoi15]

Hi. I was interested to read about your 6 course of lidocaine injections. May I ask why you went down this route and how often did you have the injections? I’ve had one lot of local anaesthetic injections but I want to have more as the first one helped. I think I’ve had a reaction to the steroid I’ve had in nerve blocks as they made me worse. Thanks

[Brandi16]

What about Lurica??

I couldn’t live without it!! The benefits outweigh the side effects but we’re all different. I wake up with burning skin on lips of my labia my groin and down my led. Feels like my skin is fried and bubbling!! It’s horrifying!!

[OrchidKoi15 in reply to Brandi16]

I was wondering what side effects you experience with the lyrica? I have fibromyalgia and I'm pretty debilitated and the back specialist scared me saying noone can really tolerate it. I'm on alot of psyche drugs and other meds as well.

[SimplyDeeDee]

I’m also on Gabapentin for nerve pain but I had no idea about this connection, I wasn’t told this by my consultant or GP neither did I see it when I initially looked online. Thanks for this, I’ll have to read up on it and if needs be find an alternative.

[hoopwhirl2007]

I want to don't another alternative but doc told me that any meds used for nerve pain had the same risks! They kept that quiet didn't they? I suppose pharmaceuticals will have to come up with something else to get their millions!

[Jas123]

Surely it's the doctors job to devise a plan of action. This doctor seems to be trying to scare you into cutting back your pain meds, without the clinical support they might arrange for a street drug addict.

It's not doctors however that are to blame, but pharmaceutical companies who maintain their profits by refusing to produce small enough doses, to enable patients reduce their pain meds, in whatever increments they require.

If pharmaceutical companies claim as they do, that this as not cost effective for them, then NICE, FDA or EMA should collectively include within the terms of their licences, the right for their governments to produce these small doses on a non profit making basis.

Is it not logical, that if chronic pain patients are to be seen as addicts, surely pharmaceutical companies must be deemed as drug pushers?

[hoopwhirl2007]

You are right in so many ways but I am so fed up trying to get medics to listen to me and at least try to understand the daily pain I am in. I just wish there was someone out there who could help us all get rid of this PN pain.

[SouthernSally]

Two pelvic health practitioners on YouTube are The Flower Empowered and Dr Bri.

I deleted my previous post because I didn’t see the other replies. My pain mimics PN but I had no response to nerve blocks. Here, they will rule out PN if you get no relief from the blocks.

I’m taking Amitriptyline a second time now. I don’t think I gave it enough time before. I also began taking lamotrigine, which is a drug I found through research. Neither drug is high enough for a response yet. I’m at the point I will try almost anything. Pelvic PT didn’t help me but it has helped many. Many of the exercises at the two sites I mentioned are exactly the ones I did in PT.

[hoopwhirl2007 in reply to SouthernSally]

I'll check these exercises out. I have now weaned myself off amiltryptlne and just taking Gabapentin at the moment until I can find an alternative.

[Black_Cat1]

Just Google for exercise and pregabalin is supposed to be good for pain.

[hoopwhirl2007 in reply to Black_Cat1]

Many thanks, I will check it out

[Lamly]

I went on Amitryptiline but after one month having to come off it as I am suffering terribly Anxiety and side effects.

[Black_Cat1 in reply to Lamly]

That's awful what dose were you on how many mg a day?

[Knitting20projects]

As someone who had devastating CRPS/PN, I would prioritize your well being today with a very debilitating pain syndrome over some unproven possibility of a slightly increased risk of dementia someday. If the gabapentin is helping you survive right now, I would think very hard before weaning off it. If your PN is like mine was, it was the worst thing I have ever experienced. I guarantee that doctor has zero clue how bad PN pain is. Not to mention the mental health consequences of severe chronic pain. I’m a doctor. That doctor should really think twice before saying that to chronic pain patients. There’s a reason CRPS is called the suicide disease. Please don’t over focus on some unproven possibility and deny yourself something that is helping you. That’s all I’m saying. Best of health to everyone here.