Is Pregabalin the cause of the pain?or the cure?

[Alwenna1943]

Side effects of Pregabalin.

Has anyone information on Pregabalin causing extreme vaginal pain. This pain returned when our surgery erroneously told her to drop one of her 3 x 100 mg tablets overnight, within weeks the pain that the pregabalin was supossed to be controlling returned with a vengence. It has remained contineously ever since even though the pregabalin was increased from 300mg to 375 & 450 daily.Was it a coincidence that the pain returned on reducing the dosage? and why after over 10 weeks has there been no change at all in reducing her pain?

[SqueakMouse]

Hello there, Alwenna1943😍!

I just wanted to write in response to your heartbreaking post, because even though I've never experienced the extreme vaginal pain you described, I have suffered for years with neuropathic pain in other areas (CRPS, small fiber neuropathy, nerve damage following a stroke), so I know firsthand how devastating and excruciating it can be, and how powerless, helpless, hopeless, and alone it can make you feel😥

Therefore, when I saw your post and noticed it was in reference to neuralgia/neuropathic pain--and also noticed that almost five days have passed without a reply--I wanted to reach out to you and offer whatever experience and advice I might have (which as I said above is rather small, since although I've had extensive and severe neuropathic pain and taken gabapentin for years to help address it, I haven't suffered neuropathic vaginal pain, nor been on pregabalin long-term), in hopes that the aforementioned hopelessness, helplessness, powerlessness, and isolation caused by chronic nerve pain isn't increased by a seeming absence of support, empathy, and understanding that is sometimes felt when replies to one's posts are absent/scarce😳

But please PLEASE know, I am confident that such conclusions/impressions really aren't true; there are so many wise and wonderful folks on this site who have an abundance of advice and comfort and support to offer, and they do so with a selflessness, speed, and sympathy that often brings tears of appreciation and awe to my eyes☺️

It's just that like I said, your situation is relatively rare (in comparison to the number of people on this site with neuropathic pain in other areas such as CRPS, sciatica, carpal tunnel syndrome, disc disease, etc.), so folks might feel unable to share much experience or advice about your issue. However, I have no doubt that like me, this group of nerve pain patients all feel great compassion for your suffering, and will openly and generously share any information they can offer if they think it's relevant😋 So hang in there---more replies to your queries might be on their way as we speak😍

In the meantime, I hope that the meager feedback I have to give will be helpful for you; how I wish I had more to offer, because I would happily and eagerly write you an encyclopedia on this subject if I had such knowledge to share😋

First of all, I would suggest accessing that vast pool of support I mentioned earlier (the many patients on this site who suffer from various chronic pain syndromes) by posting your question in some of those sections; I have no doubt that you might well get some really helpful information that way.

For instance, the entire CRPS population is intimately (and heartbreakingly) acquainted with severe, unending, debilitating nerve pain that is often frustratingly difficult to treat, and confoundingly unresponsive to treatments or doses that "should" work, and/or that work well for other patients but not for them. Furthermore, many of them are currently taking pregabalin or gabapentin (or at the very least, have tried it in the past) .

In other words, hundreds or even thousands of these people share two very crucial aspects of your issue, even though their diagnosed illness is different. Neuropathic pain has similar qualities no matter what body part/S it affects, and therefore, most of these patients can not only empathize, but offer very useful advice, recommendations, or guidance due to our shared experience😋

And since pregabalin is prescribed for many types of neuropathic pain, most of these patients can also offer some helpful feedback related to that particular shared experience, as well.

Just off the top of my head, I would try asking your question in the chronic pain group, the CRPS group, and perhaps even the fibromyalgia and/or sciatica/spinal disease groups.

There might well be several others well worth reaching out to--please forgive me, I'm not terribly familiar with every last group on this site because there are so many, plus new ones are being added all the time--and you could even check in with a site moderator to confirm whether or not that group would be a good fit for your issue/question😃

You didn't mention what diagnosis you are working with (there are a lot of "dynias" out there, I.e., vulvodynia, etc.), and unfortunately, there isn't a lot of peer reviewed research or large studies in that area...but nevertheless, there HAS been some documented and academically accepted proof that indeed, neuropathic vaginal pain syndromes can respond well to pregabalin (even putting it into remission in some cases), and also, that reducing the dose even a little can cause the pain to return with a vengeance.

Furthermore, studies suggest that it can take 12 weeks (on average) or longer to achieve pain management with pregabalin, so your experience of going 10 weeks on the medication without relief isn't at all unusual, nor does it signify that it will never work (and/or never work well enough to experience significant pain reduction).

Therefore, unless the side effects are intolerable, I would suggest giving the pregabalin trial a little more time (and at the very least, enough time to surpass that "magic number" of 12 weeks).

And if that doesn't leave you with good results, don't give up on the medication just yet---some studies suggest that even though some patients can combine their prescribed dose into one "serving" (e.g., once at bedtime) and maintain their previous level of symptom relief, others experience major setbacks by doing that (even if the total dose is the same).

Similar studies also conclude that even tiny reductions in the total dose can significantly lessen or even totally eliminate any previously gained pain relief---or worst of all, exacerbate the symptoms and increase the pain, just as you described.

There is some anecdotal evidence that suggests vulvodynia (and associated nerve pain syndromes) can be triggered by a physical or emotional stress, including accidents, surgeries, and medications (even the seemingly minor/insignificant accidents or procedures, or very low doses of a medication).

The neuropathic pain syndrome CRPS is famous for "coming out of nowhere", with excruciating nerve pain traced back to something as simple as a nerve block, a stubbed toe, or a few weeks in a carpal tunnel wrist brace. A little less commonly (but no less well known/documented) are cases that can't be traced to any specific cause, because it was so comparatively "insignificant" as to fail to register in memory.

But the relative significance of the cause (if it can be identified in the first place) rarely relates to the severity of the pain. A devastating car accident with multiple fractures can result in a very mild case of CRPS in a single limb, while an ankle twisted on an everyday normal jog can result in extensive, severe, excruciating CRPS in multiple areas/limbs.

So in answer to one of your questions--yes, it is indeed possible for a neuropathic pain syndrome like your wife's to "come out of nowhere", to be "triggered suddenly", to result from one very small dose of a single medication (and/or the withdrawal of S medication that hadn't thus far caused any negative effects).

Humans (and neuropathic pain syndromes) are complex, with so much we don't yet know or understand, so it's more likely than not that these "causes" mentioned above are simply one part (albeit, perhaps the most obvious part) of a complex set of causes. Nevertheless, for all that science doesn't yet know, it HAS suggested that nerve pain like your wife's can be caused by the things you suspect, and present exactly as iyou described.

The other side of that coin suggests that these neuralgia syndromes can get better (and/or go into remission) as suddenly and mysteriously as they arrived, which is excellent news😍

Until then, the challenge is to find a way to minimize pain, manage symptoms, and increase quality of life--and fortunately (despite how agonizing the pain is, and how severe the symptoms are, and how limited the quality of life may be at the moment), there are lots of viable options on that account😉

In addition to the pregabalin and gabapentin I described above, there are many other medications (used alone or in combination with others) that have proven success treating severe neuropathic vaginal pain syndromes such as vulvodynia, so if your wife finds that pregabalin alone just doesn't work for her (even after following the guidelines above), it is well worth it to try some of these as well.

The medications run the gamut, including narcotic pain relievers, anti-depressants (used "off label" for their pain relieving properties, as well as their usefulness in managing the emotional and psychological distress that usually goes hand-in-hand with severe and chronic nerve pain), anticonvulsants, numbing creams, hormonal gels, and many more.

Every patient is different, and more than any other syndrome or disease process, it seems that treating neuropathic pain successfully differs from patient to patient, too. You're not alone in this😊!

For instance, gabapentin (genetic Neurontin) didn't work at all for me in any dose (except to produce disabling side effects), and name brand Neurontin didn't work for me either--but only in the lower doses.

After a very very long period of trying different brands and doses, I ended up finding significant relief with the highest recommended dose of the brand name only (Neurontin); oddly, I had no such success with an equal dose of the generic gabapentin.

Furthermore, while the high dose Neurontin did help quite a bit, the relief wasn't sufficient---I still had to work up to a combination of several different doses of several different medications to reach an acceptable level (and just FYI: I noted no benefit whatsoever with that brand name Neurontin until the 14th week, with its maximum benefit reached at about 18 weeks).

And I wasn't being picky or anything😋--my doctors and I have managed to get the pain down to a 4 at best on the pain scale, but compared to the 7 achieved by the Neurontin alone (and most importantly, the 10-plus I experience without any medication at all), I was extremely grateful😍

The combination that makes up that magic cocktail is the highest dose of brand name Neurontin (taken in three divided doses; all at once didn't work for me); a numbing cream called Emla (generic is "2.5% Lidocaine/2.5% Prilocaine") to apply to the affected skin; an anti-Seizure medication (Lamitrogine, in two divided doses); and a narcotic pain medicine in three divided doses.

*Which reminds me of another important detail: Though I'd been taking that particular brand medicine (in generic form) with no changes and much success for several years, one day it literally and inexplicably stopped working--my pain was once again so awful and so disabling that I ended up in the ER several times over the next few weeks, for pain management and treatment of the deep skin ulcerstions and severe swelling that resulted.

But after a little detective work, we discovered that my pharmacy had switched to a new supplier with the onset of the new year---so while it was still the same prescription and the same dose, the manufacturer was different--and astoundingly, that made all the difference (after consulting with several pharmacists and doctors on the subject, I learned that this phenomenon does indeed happen---it's not common, but quite possible). Now my pharmacy special orders my prescription from the previous supplier, and everything went back to normal😋

The point of all that is to say that there are a LOT of different factors that go into how/why a medication works for you (or doesn't work for you)--factors beyond medication and dose, and ones that most patients don't know about or consider.

For example, maybe generic pregabalin will provide no relief for your wife, at any dose--but perhaps brand name Lyrica WILL. Or it's possible that generic pregabalin from "x" pharmaceutical company will cause her terrible side effects and no benefits, but generic pregabalin from "Y" pharmaceutical company will trigger no side effects but provide huge benefits😋 Never give up on a medicine until all those factors have been thoroughly researched and taken into account, or you might miss out on a miracle drug (albeit one that's masquerading as a lemon at the moment😊😉).

In other words, don't give up hope😍! I know how terribly difficult that request is, especially when you or a loved one has been suffering with long term agonizing pain, and when that pain is as difficult to treat and manage (much less cure) as neuralgias typically are😥

So I promise you--I do not at ALL mean to minimize or underestimate your pain, despair, exhaustion, or struggle---as I said earlier, I walk a similar path myself, so I deeply empathize with your experience, and my heart goes out to you and your wife😍

I just mean to say that even though there isn't (yet) a whole lot of research out there on your particular issue, or very many treatments specific to that issue (or medications guaranteed to help/heal it)...some highly respected research DOES exist, and there ARE some symptom-specific treatments, and pharmaceuticals HAVE been produced that provide significant relief (and for a few lucky patients, even a cure😀!)

It just takes a little (or more often, a LOT😉) of trial and error to discover the ones that exist, and more importantly, the ones that work for your case in particular.

But since I can imagine that you and your wife have endured more than enough trial-and-error already😋, I did some research after I first read your post, and found a peer-reviewed study in a respected medical publication that summarizes everything I described above, all in one handy article😀

I tried to cut and paste the link for you here, but just in case the link doesn't work, you can pull up the journal article by typing "pregabalin+neuropathic vaginal pain+62 year old woman+research study" in any browser; the entire article is published there (as opposed to just a study summary/ conclusions section, which sadly is more often the case😮), so you won't have to subscribe to the publication or buy the article through a medical library either (a rare and wonderful thing😍).

ncbi.nlm.nih.gov/pmc/articl...

Alrighty then, that's about all I've got😋 I am SO SORRY thus message is so incredibly long (I hope that isn't too crazy-making😮), but given how little information is out there (or more specifically, that is out there AND easily accessible😉), I wanted to be sure I gave you every last drop of the experience and knowledge I've gained through living with neuropathic pain myself, in hopes of sparing you from endless hours in the library reading doctor-speak in intimidating professional journals, or combing through the 100, 000-plus results that Google kicks back to you😋

BEST OF LUCK to you and your wife😍 My thoughts and prayers are with you, and I hope with all my heart that you find healing and relief very very soon😍

[Alwenna1943 in reply to SqueakMouse]

Hello Skweaky much thanks for your kind letter to my wife Alwenna, much appreciated. It is a long and painful road to climb all because she was given incorrect information regarding a reduction in her medication. It should NEVER have been 100mg overnight as instructed , but a max of 10% over a month. We have had a lot of sympathetic responses, the problem according to our doctors is that they maintain the pain is psychological, some call it phantom pain? Similar to soldiers who lose limbs but can still feel them, it's not much help I know, and the pain is just as real to the patient,. We are also looking at the possibility that there may be a gynaecological aspect to it following cesearean in which she did not respond to a general anaesthetic and was aware throughout the op! Not a nice experience,the surgeon was aghast when informed she had felt every cut into her womb, and could prove she was awake but unable to move..