Pelvic Pain Support Network
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Pregabalin

Hi All

Has anyone been prescribed this for pelvic pain and got on well with it? I have just started taking it and seems fairly positive re pain at moment but seems to be affecting my balance and I have had a couple headaches - my balance is not good anyway but I don't get headaches usually. Have you had side effects that settle down?

Thanks

Elaine

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Hi Elaine, I've just started on this medication too. I am on low dose 50mg twice a day with a view to build up slowly. I feel a bit dizzy upon standing and slightly spaced out. I also have a dry mouth but I will stick with it as I'm hoping it will settle. It hasn't taken my pain away yet though so it's good you have had a positive response from it. What's your dose?

Regards

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I'm currently on 75mg morning and night - (just gone up from just 75mg at night) - if tolerated the prescription is that can go up to 150mg morning and night - I don't think I am going to hurry to do that. At the same time I started to lower my amitriptyline dose - consultant said do it slowly if at all (wanted to try as get terrible dry mouth with it) - and I started to get burning when weeing. So have put amitriptyline back to what is was, and have fingers crossed that was the cause and not the Pregabalin - only time will tell! I have seen some posts saying that GPs will try to switch you from Pregabalin to Gabapentin (not sure if that is the right spelling) as it is cheaper, but it is not as good and makes you very groggy in the day. I will resist if they try to change it for me, don't think they will as I am on a very wide range of unpleasant drugs and the chances of problem interactions stops GP messing! Hope the Pregabalin starts working on your pain soon

Best wishes

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I was in gabapentin for over 10 months end dose was 2800 mg. It did not help at all which is why I stopped. What finally helped my pelvic pain is getting 200u of botox to each side of pelvic floor. I was completely knocked out as doc went inter vaginally. Obturator and Ali levator (sp?) muscles. I've now had 3 different surgeries but it really helped.

Best wishes

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Sounds drastic, waiting for appointment with surgeon so will see!

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Hi Elaine,

I started taking it about three weeks ago. I to had some light head problems but these passed after about a week. I am know taking 300mg a day with no problems. Keep taking it and it will help you with the pain.

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Thanks - I will continue - it does seem to be working but a bit sceptical as have occasional respite where the pain stops for a week or so on its own - I think it has gone and then it hits me like a sledgehammer just as I start to relax!

Best wishes

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Hi everyone, I've been taking Pregabalin for Pudendal Neuralgia, upto 8x75mg a day, for well over a year and it has helped to some extent. I had been on Gabapentin before that and a couple of others before that. I now see a pain consultant who wants me to come off the Pregabalin. He tried me on Imipramine at first but I had a very bad reaction to that, burning pain over most of my body, but now I'm on Nortriptyline and that seems to be better. I am now on 20mg at night and am to increase that after two weeks and gradually take it up to 50mg. At the same time I'm to reduce the Pregabalin and am presently taking just 150mg in the morning. I have had a lot of sleepless nights and headaches coming off that and that seems to be typical. But I'm glad to say life is getting better for me. The pain is resolving and I am freer in movement and feel stronger. I'm managing to walk further, I've started Pilates and I'm swimming regularly.

I may always have to be on medication and that makes me feel sad and angry, but if I can get to the point where I just have to take one tablet a day that will be amazing. I wish the same for all of you out there trying to deal with pain and the mess that makes of life. God bless. Julia

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Can't remember which is which, but I tried Lyrica first, too spaced out to operate. Tried Neurontin second, but had major balance and tingling issues, had extreme dizziiness to the point of ending up in a and e. Weaned off them all really slowy, but coming off them was pretty bad. Tried Amytrip now an Cymbalta which doea a smidge for the pain and side effects are tolerable, mostly involve me falling asleep.

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I've taken this way overpriced drug for nerve pain now several times and it has not helped my pain at all other than doping me up and making me sleep more (when I manage to sleep I don't have pain.) This is the highly touted Lyrica which along with a bunch of other useless drugs does nothing but cost money. It is also an offshoot of anti-convulsant drugs such as neurontin (which does help the burning and shooting nerve pain in my arms and legs and is also prescribed off label. Doctors tell me Lyrica works but it didn't work for me made me more depressed and sick to my stomach. Side effects include - Tiredness Dizziness Headache Dry mouth Nausea or vomiting Constipation

Gas or bloating ''High'' or elevated mood Speech problems Trouble concentrating or paying attention Confusion Memory problems or forgetfulness Anxiety Lack of coordination Loss of balance or unsteadiness Uncontrollable shaking or jerking of a part of the body Muscle twitching Weakness Increased appetite Weight gain Swelling of the arms, hands, feet, ankles, or lower legs Back pain

My pelvic nerve pain has now expanded into (doctors are now accepting this) into a progressive neuropathy that is taking away the feeling in my legs and arms. I cannot blame Lyrica for all the side effects above as I had a lot of them already due to the progressive inflammation of my muscles due to nerve damage. But I do remember that the dizziness, unsteadiness and muscle twitching did get worse. I also had the same result on Lyrica which I have had on most anti-depressive drugs which is increasing suicidal mood. (Back to being royally pissed today instead of wanting to do away with self) I was given Lyrica recently when I had a new knee replacement and it did nothing then as I do remember it did nothing in the past - nothing at all for the pain. It's been 18 years now and I am headed for a wheelchair as I can barely walk from one room to another and doctors are just now paying attention to the severity of my condition. I find neurontin (which is cheap) and another anti-convulsant (developed for seizure disorders) older pill more helpful for nerve pain although if I take it in the quantities that the doctors would prescribe I would also (did when I took it while I was back in school for my Masters) suffer confusion and memory loss. Other than good old reliable drugs such as oxycodene, aspirin, naproxen, valium the only new drugs I have found to be a boon to suffering patients is the development of Zantac and drugs like those so that I don't have to suffer as did my father (who almost died) or my brother (who did die - his idiot doctor not prescribing them even though they were available) from bleeding ulcers. I wish I didn't sound so bitter and I don't usually write on this blog as I haven't found any answers and am still furious at the majority of doctors who don't understand the crippling nature of Pelvic Pain (maybe since most of them are MEN!!!) I'm still looking for help myself and this is the only reason I check on this site now and then. Good luck - my heart goes out to you.

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I do sympathise, but take exception to your comment towards the end. I am male and have suffered from severe pelvic floor pain (PN) for 12 years. Your post implies that only women suffer from this debilitating condition, but that is not so.

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You are absolutely correct and I did not mean to imply that only women were patients or that women doctors would pay more attention (my gyn doctor who told me in 1997 that my nerve pain was nothing and only temporary was a moron as were many other gyn doctors who did not diagnose my invasive endo). Some type of progressive neuropathy tendencies run in my family but the pelvic pain seems to have been the trigger for what I am going through and I had a brother (dead now crippled for a long time) who suffered what I am suffering after a serious car accident and hernia operation. He was also dismissed by doctors of all genders giving up and just going to bed swallowing tranquilizers. WHAT I DID MEAN IS THAT DOCTORS WHO DO RESEARCH AND WHO SHOULD BE TAKING THIS MORE SERIOUSLY ARE HISTORICALLY MALE. And for hundreds of year we women have been banished to our beds with severe pelvic pain by most of the men in our lives "Oh there she goes again with all that woman stuff!" (Heard from my husband my grandfather and other men as well.) I am sure there were many other untreated males who kept their mouths shut for fear of being regards less than male. I have heard horror stories to match my own from men and I apologize profusely that I did not clarify my position. There is so little real work out there on crippling nerve problems and, even those whose blood tests attest to the gravity of their conditions such as those who come up positive for MS or ALS do not receive any hope of cure and suffer constant pain. At this point in my life the only relief I get is prednisone (which I take sparingly). I am losing all power in my feet and my ankles are in agonizing pain. The numbness in my hands is often terrible and the spasms in both arms and legs which come on suddenly will make me scream. Swimming is the only exercise I can do. I went for physical therapy after my hysterectomy when I had bad nerve pain in one leg and the PT therapist there (college age and dumb) insisted I keep doing this one exercise which, being very supple, I was able to do, even after I kept telling him it hurt too much. As a result I lost the use of my left leg for three months getting it back by an intensive swimming regime but have never regained fully the use of that leg. I am 70 now and sick of hearing easy answers so I do get a little hostile. I used to walk miles, dance, do aerobics, bike, sculpt, 200 situps per day - today having a painless session on the toilet is a marathon. I am waiting to hear some really good news on this site or my newest site the neuropathy site. (Doctors finally admitting I have something to worry about.)

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OK, noted and I appreciate your further clarification.

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I've been taking Pregablin for about 8 years and it is a lifeline for me. I did have a few similar side effects when I first started taking it but they soon stopped. Good luck with it!

Katy xx

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Hi i took gabapentin first which made me feel drunk! I only tolerated it for 4 days. Then i tried pregablin which i slowely increased the dose to 150mg 3 times a day.i stayed at this dose for about 3 months but was a bit spaced out at times and extremely tired.i also experienced muscle twitches around my body and started having bad nose bleeds so i decreased and stopped.

i had about 3 weeks with no pain relief and strangly i felt good.the constant pins & needles in mybuttocks stopped so i started to wonder whether it was actually causing the symptoms.

the pain came back though and started having tight cramping/buzzing sensations,pins&needles around my buttocks,thighs and nether region! so started amitriptalin,increasing up to 50mg at night. Main side effect with that is dry mouth and constipation for me. Then i read that a combination of both medications can be more benifical so went back onto pregablin but this time havnt got higher than 100mg 3 times a day and i dont seem to suffer from the side effects.Any higher dose and i loose concentration and feel fuzzy headed.

Ive found ive had more pain relief with taking both.

my physiotherapist advised me to have magnesuim as this is good for nerves. Taking it orally though we only absorb about 6%.its absorbed better through the skin by having baths with epsom salts in 3 times a week. Who knows if it will work but im willing to try.ordered my 25kg bag off amazon,cheapest way ive seen to buy it and am giving it a go!

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for some reason Pregabalin seems to work better for vulvodynia and not pudendal neuralgia, though I don't know why ...this from just something I read off 4 different forums ...

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it seems to be working for me - pain consultant didn't think I had the pudendal neuralgia - so I am bearing that out - but they are not sure what I have so can't comment about vulvodynia, although I have wondered a couple times. I just think there is something structurally amiss down there and it is sending the nerves a bit haywire!

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