...meds not working

[pizzarios]

Okay so my peimary care threw gabapentin and 5% lidocaine at me a few weeks ago.
400mg gabapentin per day. I hav felt no difference. If anything, th pain as only slowly gotten worse.
The ointment worked for the first few nights for vulvadynia ( just one of my symptoms ) bu tonigh it has done nothing. My urethra and bladder are on fire & I didn't even sit ONCE today.

I do no yet hav a referral to a Pain management md yet, but gp is willing to work with me. Any suggestions on a second line of defense? I know th GABA takes a while to kick in and I could increase the dose but I'm not sure how loopy I can get since I hav to care for my two small children all day.

Pt did butt massage yesterday and it didnt seem to make pain any worse...only third session tho.

Thanks all.

[DoubleEdgedSword]

pizzarios, sorry to hear you're in pain even with those meds. I wouldn't just increase the dose of your gabapentin on your own. Talk to your doc tomorrow & let him/her know it's not working.

In the meantime, try something cold/frozen to ease the pain. I use a 'slushy' frozen water bottle. I keep two frozen at all times, and when one's thawed out, I grab the other. While you're waiting for it to freeze, grab a bag of frozen veggies or an ice pack out of your freezer.

How to make the slushy frozen bottles.. Take an empty water bottle (I use the 500 ml size), put about an inch of rubbing alcohol in the bottom, fill the rest with water, cap it tightly and freeze it. Because of the alcohol in it, it won't freeze totally solid, so it makes it more comfortable for those tender areas.. I wrap the bottle in a cloth & shove it down my underwear when I need to be 'hands free', otherwise I place it where it needs to be & hold it there..

I sure hope you find some relief soon..

[pizzarios]

First, thanks so much or the advice / input.

Second, I apologize profusely for the spelling errors. Typing on iPad touchscreen and I HATE IT!!!!!

[ezer]

Frankly meds are hit or miss. You have to have a doctor that is willing to experiment and help you find the right cocktail.
Gabapentin never did anything for me.

[Budgie]

Hi pizzarios. Sorry to hear you're really suffering at the moment - we've all been there if that's any consolation - probably not! Firstly, the dose of Gabapentin you're on is quite low. I've taken Gabapentin for years and take 2800mg per day. Its one of those drugs that takes a while to get into your system and also any increases have to be done gradually. As has already been said, its worth speaking to your GP to decide how high to go and how fast to increase it. Usually you can increase by 300mg for 3 days and then another 300mg for 3 days and so on. However, I'm not a doctor so please discuss with your GP.

I've recently started to take duloxetine for my urethral nerve pain and after about 4 weeks its actually starting to have some effect. Again, I had to increase it gradually to 60mg per day. Its not perfect and I'm still getting soreness and urethral irritation towards the end of the day so I may need to increase it again, under the supervision of my GP. I'm also on slow release morphine which has also helped somewhat. I didn't really want to take morphine but needs must sometimes.

Keep going with the PT. It can take some time for that to have any improvement and could potentially make things worse temporarily. Only for a short time though. 3 sessions is only a very small number so you need to keep it going if you can. Are you finding that painful whilst its being done?

As someone else said, ice packs can be very good and give some relief. I bought some gel packs that can either be heated in the microwave or frozen. I usually wrap a frozen one in a tea towel and sit on it. This is good for muscles and also for settling nerves down.

Hope things settle for you and that your GP is helpful in getting some improvement for you.

[Elmwood]

Hey.

I know its annoying but give the meds more time. I took Lyrica on two seperate occasions and both times it didn't work for a while and then all of a sudden after 5 weeks or so my pain (which is actually severe tingling) just went away. Lyrica and gabapentin are very similar. I came off of it because I thought it was giving me bad side effects but I'm not sure thats the case anymore and I may get back on it some day. I must say that when it finally worked it was like a wonder drug and I was only on 300mg a day. Give it time and if it doesn't work then talk to your doctor. But it is also important to educate yourself on these medications. This site is great for info about Pudendal Nerve because the people here know more about it than most of the medical world. But when it comes to these high powered medications its best to do your research, listen to your doctor, and listen to your doctor.

[janetm2]

My Gabapentin experience was a slower increase of I think 100mg two days then add another 100 mg. Also I got up to maybe 900mg and stayed for a few weeks then went up again stopping at 1500 mg as advised by the doctor that regulates my oxycodone painkiller usage I started for my chronic foot pain way before PNE struck. I may have benefitted with a higher dosage but I do get some relief. I am post surgery so someday I hope to get off of these but do not feel ready for that yet. Good luck and hang in there.
Janet

[deBBieW]

Hi,
I am on cymbalta, take at night, and 2400 mg of gabapentin. I upped my dosage very, very slowly. This was done over several months. My current pain doc is the one who had me go up to 2400, stating most pain relief benefits are felt between 1800 and 2400mg. I've been on this dose for about 7 mos., and it does help calm the pain. Eventually I added cymbalta, I'm not sure it really helps with the pain, but I'm on it and just sticking with it.

Just know that some of the initial side effects of the gaba may get better, you need to give it time and get that dose titrated upwards. I sleep well, and work part time etc, I am able to function. I also use vag suppositories (recent addition) and a custom mixed vag cream. PM me if you want more info on that.
I take vicodine ONLY when I'm having a flare and the pain spikes.
I feel for you, having young children at home is an extra challenge.

Hope u find some relief soon,
Debbie

[pizzarios]

I just want to say thank you to all of you who responded and gave advice/support. Patience is not my strongest virtue, so I understand I need to give the meds more time and take it slow.
The gabapentin seems to be working better...either that or the two additional rounds of pt are starting to work. Who knows. Ultimately I'd love to be drug free and deal with this problem in pt sand homeopathic ways, but you can wis in one hand and crap in the other, as my mother in law loves to say.

Like many of you, I just want my life back. I hope you're all doing well tonight.

Oh, and I have an appointment set up to see a pain management doc, so hopefully he can get me some relief as well.

[Budgie]

No problem pizzarios. Glad the meds and/or the pt have started to have some effect.

For a long time I've said I'd like to be pain/drug free but sometimes you just have to accept what you've got and try and deal with it in the best way possible. Usually that means utilising several different things e.g. pain meds, PT, exercise etc. We're all different so different things work for different people.

I'm pleased you've got an appointment set up with a pain management doctor. Obviously they won;t look for the root cause of the problem but they will give you ideas on how to reduce/stop the pain and prescribe meds accordingly. They're more expert than GPs in this field as that is their speciality. Once you're out of pain you'll feel brighter in yourself and be able to do more.

I understand what its like being in pain and having young ones around. Not easy. We've got a four year old and I hate not being able to do things with her sometimes.

Anyway, keep us posted on how things go with the pain management doc...

Neil