[Adalaide]

I was on gabapentin at 900mg for 2 or 3 months maybe and while it wasn't really doing anything for me I expected an increase at my next appointment with my PM. Since my neuro had originally prescribed it, she told me to increase it and we doubled. That was 2 weeks ago and I just hit 1800 this Thursday.

Here's the problem (and some people may not be interested because the topic is sex, but I'm putting this here specifically because of the number of us who use this drug), I can't orgasm anymore. I ended up curled up in my husband's arms last night sobbing like a child. I haven't had issues before so I can't imagine what else could possible be causing the problem. Is this something that is common or that anyone else has had? If it wasn't Saturday I'd be on the phone to my doctor. I have an appointment Thursday but if they have an opening earlier in the week I'll go. I'm so frustrated and angry that I'm on the verge of flushing my bottle of pills. I can't live like this. I can do all my medical problems, but I can't do this. I don't know what to do.

[Hannajane]

I can't speak personally on this topic but I googled it and it appears as though it's not at all uncommon side effect of the medication. I'd call your doctor Monday and discuss it. I tried to post a link to an interesting article but I guess new members can't post links.

[Brambledog]

I'm so sorry Adalaide, that is one side-effect no one wants...

I know a lot of folk on this forum are on gabapentin and it works very well for them, but it's not right for others. I went on to gabapentin myself a while ago, and had to come off it because it wrecked my stomach. But....big but, I noticed a change in that side of my life as well, things just weren't the same, and I definitely wasn't sorry to be off the stuff. I was on lyrica before it at a high dose, and went on to gabapentin because my GP thought I'd have fewer side-effects (plus I suspect the fact that lyrica is expensive had a bearing on his thinking ). What a joke. I came off the gabapentin very quickly simply because i was being so violently ill that i couldn't keep anything down, and after a week off everything I went back on to lyrica again at a low dose (50mg twice a day). It now does more than the gabapentin ever did (which was sod all), and I have pretty much zero side-effects. The lyrica is more effective for me at a low dose than it was up high. Odd.

As Heidi said, ring your doc ASAP, and ask her opinion. Meds are a very personal thing, and each one of us has to find the right mix for them. I can only give you my experience and opinion. My pain doc said gabapentin was 'nasty stuff' after I'd come off it... Which coming from discussions about opioids and other strong stuff, hit home. You will find something that works for you, never give up on it. The search can be tough though...

I understand your fear and distress completely. It's horrific when you feel like this disease might take something so precious away, on top of everything else it has affected. Try not to panic. That side of things sorted out pretty quickly once I was off it, and I've been fine since thank goodness.

I have my fingers crossed that this is unconnected and a temporary issue for you. Sometimes stress and other factors can affect that side of your life more than you think.

Take care of yourself, try not to worry, and let us know how you get on with your doc.

Bram

[Allanira]

The first time I was on gabapentin it took my libido way up. I think that's why we have a second beautiful baby boy lol. This time it took it way down as in no interest what so ever. It effects everyone differently. I'm glad my poor husband is in Korea for the year because I might have to change to a different med. I read somewhere when I was looking at side effects of the different meds used to treat this that it does happen to some people and some people have no side effect of it. It all depends on the person. I hope this helps some.

[Adalaide]

Thank you so much for the responses. It helps so much to know I'm not completely alone. I did decide today that doctors aside, I can't be on this medication anymore. I'm not stupid, and I know I can't just go off of it, but I also have been on it before and know how to start tapering which I will begin before my appointment Thursday and see if they can get me on an accelerated schedule. I'll end up criminally insane if this isn't resolved fast. Fortunately my husband is being very supportive and says that he wants this resolved as much as me.

I did get a little relief at least today for my pain. I had to go to my best friend's office because I trade work with her since I'm trying to start my own business. I showed up in tears because I got terrible cramps on the way there. She called a friend who does this whole essential oil thing and had her come right over. Now, I'm all fine with the hippie health stuff... I don't use shampoo or soap, but you can't help CRPS by rubbing freaking oil on people's feet. I wasn't just skeptical, I outright thought it was stupid and a waste of time. But whatever, I humored her. Surprisingly I feel better than I've felt all week, more "hit by a truck" and less "hit by a string of trains." I hate it when I'm proven wrong. Also, I smell pretty awesome.

[Brambledog]

Lmao, I was just as skeptical, but it seems there are some hippie health freak things that actually make a difference... The first time the PM folk mentioned meditation, I rolled my eyes and thought 'here we go'...but in the end I think it's what got my mind and attitude back on course, which helped my pain more than any med I've tried so far. And I use the lovely essential oils in massage myself...smelling amazing certainly helps me in some way! I now go by the basis that anything that helps me feel good, in any way, helps my mood and my mind...and my pain .

So glad it helped even just a little. If it made any difference at all, I'd say it's worth investing in some and trying the self-massage thing. I can't afford to go and have a professional do it, so I researched self-massage on t'internet and did it myself I'm quite effective these days! Just be careful what oils you use, and to stick to natural oils etc. my skin isn't very tolerant these days, hope yours is a bit more forgiving.

Bram.

[eevo61]

Adelaide,I think at he beginning mostly all of us experience some discomfort and changes in mood with the medications and specially with our condition.
I'm on gabapentin for a while but I can't keep the same dosage everyday,normally by my dr advice I take it as tolerated,the goal is for me 1800 mg daily plus other meds.
I think in my case that did not influence my mood but when I got my spinal cord stimulator,everything changed .we had to work hard to reprogram and get the signal away from my pelvis and abdomen,it was directed for my right foot and ankle,but like Bram said,stress is also a key factor to be no in the mood.
One of my colleague to happens to be a pharmacist recommended me meditation ,yes meditation and relaxation with focus on breathing,to me was like whatever they had no idea what I meant but one night i was so tired to non be able to concentrated in anything, I google meditation techniques in general and found at music help relax your nerves and calm your pain by focusing on your breathing and isolate everything else,so I found in you tube the perfect music for that relaxation part,Tibetan singing bowls,I started to listened real low at the beginning every night ,my husband is been real patient on that matter as well as yours ,but been relax changed the mood,I think medications affect your body,but stress affect your brain more,try to relax and find something that keep your mind away from the pain,like Bram mentioned,oils,massages ,anything that distract your mind from the pain,hope you find that point of relaxation,yes I did not believe on it either but works after a while,but works .
Hope you the best and always check with your dr,there are so many things to ask,just make sure,do a list and ask all kind of questions and relax,wish you good luck,Jesika

[Russell]

Wow!
A big thanks to everyone for chiming in on this subject.
I have experienced a BIG drop in my own urges. I have not said anything before because being a guy I wasn't sure how to present it.
I feel a little bit better knowing that it wasn't just me...

[Adalaide]

I'm pretty excited. My doctor got me on an accelerated schedule to get off the gabapentin. My PT starts Tuesday. (in theory, assuming that everything is cool with my network exception) Then if things don't improve at least a little bit by the last week of the month I'll go get a neckstabbing. I'm scared to death of needles, so that's the nicest way I have of putting that he says that he'll refer me for a stellate ganglion block. He thinks based on the type of pain in my shoulder that I also separately have bursitis and says we can just do a cortisone injection in his office (he said he could have done it today ) but I'm not sure on the whole stabbing me in a CRPS affected joint thing so I'll see what the PT and block if I get it done do before I go letting people stab me in more places. Anyway, getting off my gabapentin in a hurry so I'm pretty excited for that.

[eevo61]

Originally Posted by Adalaide

I'm pretty excited. My doctor got me on an accelerated schedule to get off the gabapentin. My PT starts Tuesday. (in theory, assuming that everything is cool with my network exception) Then if things don't improve at least a little bit by the last week of the month I'll go get a neckstabbing. I'm scared to death of needles, so that's the nicest way I have of putting that he says that he'll refer me for a stellate ganglion block. He thinks based on the type of pain in my shoulder that I also separately have bursitis and says we can just do a cortisone injection in his office (he said he could have done it today ) but I'm not sure on the whole stabbing me in a CRPS affected joint thing so I'll see what the PT and block if I get it done do before I go letting people stab me in more places. Anyway, getting off my gabapentin in a hurry so I'm pretty excited for that.

and rest a lot after,try also,to,relax before I also,hate needles,but we had tho,deal with then,I had 6-7 lumbar blocks also accupunture I hated,but you have to do what makes you feel better,hope you get mentally relax and ready,rest,relax and sleep well,good luck,blessing from Jesika