Question about gabapentin med

[sungirl55]

Hi friends, I have recently started taking Gabapentin for pain related to tight pelvic floor muscles. I am starting at 100mg at bedtime and will work up to two or three times a day with a total of 300 mg per day. So far I haven't felt much different. I am hoping it will help calm my nerves mentally and physically and reduce the pain sensations from my pelvic muscles squeezing my genitals to death. Does anyone out there take Gabapentin for hypertonic pelvic floor muscle pain?

[Perry1270]

I was on gabapentin for a year. Same dose that you are taking. I stopped taking it as it did not help. Went to Pelvic floor therapy. Helped some. Doing so stretching exercises for now. A little relief.. Hopefully something comes along soon that will help. Good luck!

[sungirl55 in reply to Perry1270]

Hi Perry! Yes, I'm in the same boat. I've been suffering with this for about three years. Nothing is helping much. I've been in pelvic floor therapy too and it's helping some but I'm always so sore afterwards. Did you stop pelvic floor therapy? I'm kind of afraid to completely stop going to therapy. I try to stay busy to keep my mind off the pain and that has helped the most.

[Perry1270 in reply to sungirl55]

I did stop pelvic floor therapy. I am now on a compound pharmacy vaginal suppository. 20 Mg. Baclofen and 5 Mg. Diazepam. I use it at night. Need a prescription for it. I got it from my ObGyn..it does help a lot.

[sungirl55 in reply to Perry1270]

Okay, I take Baclofen orally same dose as you. It worked nicely in the beginning, but then the effects faded for some reason. I tried suppositories and they caused me too much anxiety from having to put something up there all the time. They also prevented my vaginal estrogen cream from absorbing. I'm glad they're helping you. That's wonderful.

[Perry1270 in reply to sungirl55]

I hope that you can find something that works for you. This site is great. There’s things that would not discuss with others…hopefully someone out there can help you. I totally understand how you feel about the suppository..I felt the same…but I got used to it..Good Luck!

[endoTHENmesh in reply to Perry1270]

Yes - See my comments further along in the message string. Funny thing - how a muscle relaxant can relax muscles - especially when applied to the area... My gyno uses straight up baclofen suppositories and they are fabulous...

[Cookie24]

I do and started with a low dose like you. At one point, I took a total of 900 mg daily. I was dizzy and strted dropping things. I backed off and now take 700 mg daily. Not sure it helps much. I do get a little mire sleep. I take 509 at bedtime.

[sungirl55 in reply to Cookie24]

Thanks Cookie, not sure I want to take this stuff at all. Nothing is better at the low dose so we'll see. I'm starting to consider the mind/body stuff that looks at relaxing the mind and living life like you're okay and nothing is damaged. Looking at Jim Prussack's videos now and will see how that goes.

[Cookie24 in reply to sungirl55]

Thanks, I will check out husband videos.

[totoyaya]

have been on gabapentin for 16yrs and it helps with the pain i get from pudendal nerve ,its not as good at masking the pain as much as it use to i may have to get a change of meds

[sungirl55 in reply to totoyaya]

Thanks Totoyaya! How much do you take per day?

[totoyaya in reply to sungirl55]

600mg in the morning and 600mg at night

[Aprilbaby24]

hi, I took Gabapentin for pelvic pain, starting on a low dose and increasing slowly. On 300 a day, I was like a zombie, very little conversation or bothering to move. So it was reduced to 200 per day, which lifted the confused haze but left me in pain. So the doctor suggested weaning off it and trying Duluxetine. The weaning off period was hell!!!!! Be warned. I never want to go through that again! However, you may tolerate Gabapentin better than me. All the best xx(!im still juggling medicines)🙄

[sungirl55 in reply to Aprilbaby24]

Hi April! Wow, maybe I should just stay at 100 mg at bedtime. I think a lot of my problem is anxiety and if I can convince myself there's nothing at all physically wrong with me, then maybe my brain will stop tensing up my muscles. I would hate to be hooked on drugs that aren't helping. I actually tried Duloxetine before trying Gabapentin and man, that was rough. One pill of Duloxetine made me so anxious I felt like I had been electrocuted. Terrible. I don't do well with SSRI's and SNRI's. I take a low dose of Baclofen and that worked well in the beginning. This Gabapentin isn't doing much of anything for me that I can tell.

[Aprilbaby24 in reply to sungirl55]

Hi, it did very little for me also. They say anxiety causes more damage, so I’ve been doing relaxation videos in bed ( nindra yoga) excellent to fall asleep to) xx

[sungirl55 in reply to Aprilbaby24]

Yes, I've tried relaxation videos too. They work okay, but lately I've found that physical activity (walking, golf) is helping even more. It helps my outlook and gets the endorphins going, so you might consider that too if you haven't already.

[Aprilbaby24 in reply to sungirl55]

Hi, I’ve always walked, due to having a lively jack russell!! I just don’t walk as far! I’ve been keeping a diary to help with daily activities and triggers.it’s very difficult to find a clear pattern!!!

A cocktail of things in moderation. Take care xx

[gegs85]

I have tried Gabapentin for about 1 year for pudendal nerve pain but didn't help. I would go see a pelvic floor therapist and have them help with relaxing the pelvic floor. Also, you can find youtube video's to do reverse kegels and yoga stretches to help. I have tried reverse kegels myself but find them difficult without the pelvic floor therapists help.

[sungirl55 in reply to gegs85]

Yes, I've have a good pelvic floor therapist who I've been seeing for many months. I'm grateful to have her but I still struggle with tight muscles despite all the therapy. I just CANNOT get them to relax no matter what I do. So frustrating. I've tried dilators too which makes things worse sometimes.

[Normie-Orms]

They put me on pregabalin which is much the same. I took it for 3 years then gave up as nothing changed and i was putting poisons in my body. The only thing that works for me is cannabis which reduces the throbbing drastically

[Midori83 in reply to Normie-Orms]

Hi. Did the cannabis relax tour pelvic floor muscles?

[sungirl55 in reply to Normie-Orms]

Can you give more detail about the cannabis, like in what form and how much you're taking each day. I've thought about drinking wine everyday to feel calm, but I wonder if I will become dependent on alcohol eventually. ???

[Loghomegirl]

Yes, I have been on it for 3 years. It helps calm the nerves around the bladder and low back. I’m doing 300 per day. I also see a physiotherapist for “down training exercises. Look up Dr Bri on YouTube for excellent pelvic floor dysfunction exercises. Dr Bri can show you how to calm a flare with a few floor movements. Good luck!

[sungirl55 in reply to Loghomegirl]

Hi Loghomegirl. Yes, I've watched Dr. Bri's relaxation videos and those are nice. I've been on the Gabapentin at 100mg for 7 days and it's made me constipated. I'm glad it's helping you.

[Midori83]

Hi, I have been taking gabapentin 3 times a day since June 2023. It has worked on the burning pain I used to feel in the right side of my urethra. I also take Nortriptyline 10mg at night. I would say for me it works on the pain but not on the muscle tightness/spasm. I am having a nerve block this Wednesday. Hopefully that will help. Gabapentin effect lasts only for a few hours, so you might have to try taking it at least twice a day, if your neurologist agrees. Best of luck!

[sungirl55 in reply to Midori83]

Thanks Midori. I was hoping the gabapentin would calm down my nervous system and that, in turn, would cause my muscles to relax. That was the idea anyway, but it sounds like it didn't work that way for you. Let us know how the nerve block goes. I'll be praying for you. So far, the gabapentin hasn't done much except made me constipated.

[Midori83 in reply to sungirl55]

Thank you. I don't know why my pelvic muscles don't want to relax... it all started immediately after pelvic surgery, and doctors suspect nerve damage to the genitofemoral and iliohypogastric nerves.. 🥺 hopefully the nerve block and subsequent treatments will help. I will keep you posted.

[endoTHENmesh]

Gabapentin is a waste of time. Even the medical journals now admit it does very little - for most any condition. Consider it a placebo. All it did to me is slow my mental processes and make me stupid and clumsy.

The best medication I have been prescribed for pelvic floor muscle tension and spasms, is baclofen. My gynecologist (a woman who took the problem seriously), sent a script for 20 mg suppositories to be made up at a compounding pharmacy.

1) Be aware they may leave you a little wozzie the next day - and do not drive first thing until you know how you react.

2) They may effect your digestive track (relax it), and so you have to be careful going anywhere before your morning "sit down".

3) The suppositories should not be used every night. Your body came become dependent on them and if you stop using them after consistent use - your spasms will be worse.

4) If you use them the night before pelvic floor PT, it can lessen the pain of PT and also allow you to get better stretches.

I highly recommend them as it is a god send for me when things are so bad as to be actively painful. And now that I am better (most of the time), I use them to avoid things "winding up". It helps break the cycle if something provokes.

Hoping your doctor will consider this, or that you can find a doctor that is willing to understand that muscle spasms require muscle relaxants (baclofen for instance).

ADDITION: If you are on gabapentin, please do not stop abruptly. Unless your dose is very low, you will have withdraw symptoms. Please consult your physician for a taper schedule.

[Perry1270 in reply to endoTHENmesh]

Thank you for so much information. I have been using the suppository’s…I was not aware about not using them nightly. They have helped so much that I cringe at the thought of not using them…but I don’t want to become that dependent on them and make matters worse. I do feel so much better. Thank you for the extra information. A lot of us are in this mess…and listening to someone else helps..

[CatsandCars in reply to Perry1270]

Hi, I just wanted to chime in on the baclofen. MS patients (I am one) regularly take anywhere from 10 to 80 mg of baclofen orally per day, every day. Using every other night when every night helps you would be counterproductive. Baclofen is not a drug you want to stop using all at once; you would need to taper. But it's not highly addictive or hard to get off of like valium.

[sungirl55 in reply to CatsandCars]

So do you take different amounts of Baclofen each day based on how you're feeling or your need on any one day? I didn't know you could vary your dose from day to day. Do you think I'll feel better if I increase my dose from 20mg to say, 30? I'm only allowed 30 mg per day on my current prescription.

[CatsandCars in reply to sungirl55]

Yes, I do. I take it for other parts of me as well (tight neck muscles, legs, etc. from MS) and usually wind up taking approximately the same amount every day, but if I'm having a good day I can sometimes forget to take it or decide not to, and that's okay, or I can take more if I need to. The downside is the drowsiness and weak legs for me. You could try 15 twice a day, six hours apart, and see if it helps more or just renders you useless. I don't like to take it in the morning as I'm tired as it is, but you could try 10 mgs three times a day, six hours apart if you're allowed 30 mg a day. Check with your doctor to make sure, especially if you're on other meds. I hope it helps you! 😊

[sungirl55 in reply to endoTHENmesh]

Hi there! Thank you for all the good info. I take Baclofen orally and that worked very well when I first started taking it but I think I've developed a tolerance to it. I take 10mg twice a day and can take a third dose if I want. I think I'm going to take that third dose today and see how it goes. I stopped the gabapentin last night and didn't sleep well, nightmares, etc. so not sure if that's withdrawal or not. I've tried suppositories in the past and it causes me great anxiety to put anything in that area. I'm so glad you've found that it gives you relief! What a blessing.

[CatsandCars in reply to sungirl55]

You might want to quit the gabapentin a little more slowly. Break the capsule open, dump half of it out, and take that for a while before stopping. I did that with pregabalin and it worked well.

[endoTHENmesh]

SORRY SORRY SORRY!

Do NOT abruptly stop gabapentin. My Dad did that and we called his doctor when he had a slew of issues - tremors, confusion, hard palpitations.

I should have mentioned you need to taper off gabapentin. Please consult your physician for a taper schedule.

Again - sorry I did not say that in my first post. I have added that to my original post....

[sungirl55 in reply to endoTHENmesh]

Hi Endo! It's okay, it's okay. I am fine. I had only been on it for six days or so. And I was just taking the intro dose (100mg) at bedtime. I will say that for the past couple of nights, I've had nightmares and not the most peaceful rest, but other than that, I'm okay. And I'm happy to say that my slow bowels are recovering.