Combination of meds for PN?

Hi all. I have a diagnosis of Punendal Neuralgia. I see various comments about finding the right cocktail of meds. I have tried Amitriptylene, Gabapentin and now Pregabalin. No combination. My doctor is not knowledgable on this condition. So what combinations of meds is it worth trying? Thanks. A.

[chillijava]

hi

there are many different meds available, however you need to see your gp, pain doctor or consultant at the pain clinic.

there are morphine type meds, tramadol, amongst others, everyone reacts differently to each one, so it is trial and error until you find the right cocktail for you, please do not do this yourself, only do this with your healthcare doctor

andreax

[Flossiemoo]

Hi there. I am taking 300mg of pregabalin and 20mg of amitriptyline at night. Its relatively early days but it seems to be helpful. I also do Amy Stein's exercises and use a therawand for internal trigger point release. The amitriptyline is good for getting sleep!

[Hidden]

I had success with tapentadol palexia, a fairly new drug that is very good for nerve pain. Although it is an opiate, it has something similar to amitriptyline in it that helps too. My GP tends to change my medication every time I start to build up a tolerance. It's called rotational prescribing. Changing the drug avoids having to just increase the dose. Personally I can't manage at the moment without opiates, although pregabalin does help.

[anne77 in reply to Hidden]

Are you in the US? I am asking this because recently, many doctors will not prescribe opiates. There are many news reports this last month about opiate addiction.

[Hidden in reply to anne77]

I'm in the UK. I know long term opiates aren't good for me, but for the moment they get me through the day.

[anne77 in reply to Hidden]

You are lucky that they are prescribing at all! Opiate abuse in the US is at an all time high and it has been in the news almost daily in the past several weeks! I hope there are more recommendations for pn soon. I could not tolerate pregabalin, but my internist started me on a low dose of Cymbalta and will increase the dose gradually. Too early to tell if it is helping, but at least I don't have any side effects! Hopefully we can all be pain free one day soon

[Ladylooloo in reply to anne77]

Have u tried Valium suppositories dr want me o try them very expensive

[Chinam in reply to Hidden]

Sueboooo.

I am in the UK. I only recently joined the community. It is tough living with this Condition. If you find any alternative option in uk please let me know. How do I get to contact you by e-mail

[Hidden in reply to Chinam]

You can message me by clicking on my name and then clicking on the message envelope icon.

[Hidden]

What dose of Pregablin were you on? It was only at 600mg did I notice an improvement. That's the full adult dose. It took a while to get there and I persevered with the side affects. I still get spaced out at times but it's manageable. It took 6 weeks from being at 600mg. You need to increase slowly. Maybe worth looking at dose.

[Hidden in reply to Hidden]

300mg at the moment, been on that for about 3 weeks, I aim to increase to 450mg soon, but I do feel drowsy on 300mg so I'll have to see what the increase does to me. Thanks.

[peters1]

I take Cymbalta daily and Gabapentin 300mg twice daily am and bedtime. If a not so good day I throw in Tramadol and it works best when taken at the same time with the Cymbalta and Gabapentin. Prayers for complete healing for you.

[Ladylooloo in reply to peters1]

Dr wants me to try Valium suoppsitories also suggested colstromy for a short time to give the rectum some relief from pain gabapentin did not Eli me nor did all kinds of injections including botox

[Mascaro]

I have PN. I have had nerve blocks. Currently on Lyrica 300 and Cymbalta 60mg. Also taking dexamethsone for a short course. I do PT 1 a week. I do only specific exercises for it so not to strain it even more. I live in Miami, Florida and am willing to talk to help anyone I can.

[Formand in reply to Mascaro]

Hi Mascaro,

I just read your post. I have just discovered this web site and have found such great information and women who appear to be suffering similar symptoms to mine. I have a burning buttock and burning in my vagina and pelvic floor. I recently had a cortisone injection in my lower lumbar because of low back pain. Since then, my buttock is hurting me more than before! I have not been diagnosed with PN but I will be looking into it. 3 years ago I was treated for pelvic spasms with a specialized PT. Where do you get the nerve blocks done? How long do you get relief? Thank you for offering to help!!

[Mascaro in reply to Formand]

Nerve blocks at pain mgmt doctor. For me they have been minor relief.

[Ladylooloo in reply to Mascaro]

I also live in Florida just was seen at Cleveland clinic de disilva rectal specialist suggested Valium suppositories Or a colostomy for a short time to give the rectum a rest I have tried averything including botox injections. I will see dr Kahn next at Cleveland clinic don't know which road to travel and I continue with so much pain dr Kahn is a neoroligist

[anne77 in reply to Mascaro]

I will soon be moving to Jacksonville, FL, to have more options for treatment. I currently live in SC, and there are no PN specialists. I am on Cymbalta, but couldn't tolerate the Lyrica. Maybe I gave up too soon, but I was like a zombie!!

[Mascaro]

You have to have a pudendal nerve block to know whether you have Pudendal neuropathy. Most pain specialist can do them. Make sure it is done under fluoroscopy. I could not sit for more than 20 minutes. Still dealing with the pain but nerves take a while to get better. I am coping right now. They have not taken all my pain away. Only in the first 3 hours. You need to use different modalities not just one. I am on medications, PT, nerve blocks, and just added a steroid for the next month for Inflammation. I have pain when I sit. I got a cushion that helps when I go places or drive or sit at work. I do exercise so that the rest of my body does not start to hurt. I stopped all exercise for some time but my entire body started falling apart and I was in severe pain. I swim, walk, stair climb, and have added small weights for upper body. I also take a B12 supplement. I have no pain when I lie down. This takes time as I have been told. I have been sad many times but I fight thru it. There is no way I will give up till this goes away. Don't quit. I have read much about this and never give up !

[Hidden in reply to Mascaro]

Who advised you on which exercises to do? I do the Amy Stein stretches, but I do worry that one of them may make it worse!

[Mascaro in reply to Hidden]

The PT.

[Mascaro]

I am on Lyrica, and Cymbalta. It has helped but not taken away all the pain . I will be adding Tegretol

[Hidden in reply to Mascaro]

Hope that works for you. 400mg Pregabalin and still no relief, back to the doctor and I guess 600mg. I don't like the awful drowsiness. Walking seems to be the best thing for me, it can be mildly uncomfortable, I get a chafing-type feeling, but I always feel better after. I am cutting right back on the pelvic stretches, I am worried some of them could be bad for me. I have read that the squat stretch could be bad for PN. Keeping a pain diary and recording what exercise and stretches I do. With some luck and patience I hope to find a combination of meds and self-help that works. Good luck to you too.

[Mascaro]

No squats!! Worst thing for nerve.

[Mascaro]

Walking

Swimming

Elliptical

ONLY SMALL STRETCHES NO FLEXION IN HIPS

Seat for sitting

Breathing exercises

Going to see Adam Gokdstein MD in Washinton DC

Cotton underwear

Reduce sitting

Vitamin B Complex

Good attitude

Do not use anything but water down there

I WOULD NOT HAVE SEX FOR NOW TILL BETTER

ANYONE THAT KNOWS DR. Marvel or Dr. Adam Goldstein MD IN WASHINTON DC LET ME KNOW.

MY MEDS:

Lyrica 300

Cymbalta 60 mg

Has helped!!!!!!

Adding small dose of Tegretol next week

Please anyone that has anything to add that will help please reply

[anne77 in reply to Mascaro]

Thank you so much for this information!

[amazonamazon1]

Any updates?

[Hidden]

Went up to 600mg Pregabalin, been on 500-600mg for 6 weeks, no noticeable improvement. Dropped slowly back to 400mg, 200mg, then tried to come off it. I then had worse symptoms. I seem to have found that 200-300mg gives a little relief. I am going back to the pain mgnt clinic. I find walking, gentle stretches, deep breathing, and hot baths help. Also tried a muscle relaxant, didn't seem to help.

[Mascaro]

I am getting better. NO stretches. That irritates the nerve. Sit on cushion all the time. I added CBD oil and it is helping me.