Hi, I’m currently on 2700 mg of Gabapentin a day and my life has become unlivable. My current worst symptom is a ‘UTI’ constantly, which I don’t even know if it is real. I’ve been having bladder problems for months now but I believe Gabapentin can cause more UTIs so I don’t know if this is something I should treat or not, but the constant 24/7 pain and needing to pee all the time is killing me. Aside from this I also have TERRIBLE water retention. I’ve got it in my feet and hands, but I think I have it in my belly too; I drink a load of water but don’t pee, instead my belly bloats up. That pressing on my nether regions just makes the UTI pain worse. Then there’s the tiredness, which is absolutely stupefying. I take my first dose of the day and within a couple of hours I’m a zombie. I can’t even get myself to the shower. My house is filthy, and I have NO desire to clean it. I’d rather just sit on the sofa and nurse my sore crotch, which just makes that issue worse.
Then there is the extreme inability to walk, and I mean extreme. If I can get me out the house at all, I stagger and wander about the pavement and my legs feel like they are made of stone, partly due to the fluid I’m dragging around. Then there’s the lost words and the dissociative states and the aural hallucinations. Yes, aural. On Carbamazepine I had visual hallucinations and I got some on Gabapentin when I first started taking it, but now it’s all aural. All the sounds around me are amplified and I jump at the slightest sound, plus I have heard my kettle talking to me and voices in my rooms. I’m used to them now so they’re not so bad, but still…
I could go on but you get the picture. The worst thing is my pain control is crap. It’s barely stopping the shocks and is doing nothing for the underlying pains I have too. I REALLY do NOT want to put this drug up any higher. I am obviously past the toxic level already. I was thinking of trying Pregabalin. Anyone used it? Does it have any of the same side effects? I can’t stand this fluid retention thing, so not that preferably. Failing that I don’t know what to try. I’ve had Carbamazepine in the past, and Lamotrigine, both with awful side effects (nausea, motion sickness, migraine, then erythema multiforme rash, which I have also had with Gabapentin).
I’m in the UK - if anyone has ANY drug regimen that works for Type 1 TN (with some added Type 2) that doesn’t cause horrific side effects I’d be super grateful. I will top myself if I have to endure this torture much longer.
P.S. Apologies to anyone who I didn’t reply to on recent posts. I STILL wasn’t getting notifications. I think I’ve sorted it now, but I’m on Gabapentin and I’m therefore an idiot, so no promises…
I do not know if there is a connection between Neurontin and bladder pain or not .
But your description of severe chronic bladder pain raised my “ Spidey senses”
Have you heard of Interstitial Cystitis ?
Your description of bladder pain makes me wonder if you may have IC
IC patients have constant bladder pain .It can be treated with Elmiron and / or a strict IC diet plus/minus Pyridium ( an anesthetic bladder dye )
Sorry but I cannot recall if my IC began when I was once on the Max. dose of Gabapentin or not .But it lasted for years after I stopped my Gabapentin use .
Amazingly a lot of doctors have never heard about IC —your best bet is an Urologist to help you get a diagnosis
For me it was one more hellacious pain added to Facial pain .
There is now some controversy about the treatment med Elmiron .
It’s now alleged to cause Retinal lesions .For me it was an important IC treatment but I did stop after developing a Retinal lesion
In addition to meds I found flowing a STRICT IC diet made a huge difference in my pain .No tomatoes or other acidic foods.No pepper ,the only apple you can eat is Gala and the only ice cream is vanilla etc
It also helped to keep urine dipsticks at my house to rule out infections as a cause of increases in bladder pain .
Because of course on top of IC bladder pain you CAN also develop Urinary Tract infections which only adds to your bladder pain .
In the US there is a fantastic IC Urologist at Wake Forest Medical School in Winston Salem,NC —Dr.Robert Evans
He is truly a blessing to his patients —most of whom are Women but not all .
I hope this helps -/at least the bladder pain you are having .
For me the IC got better and I was able to lighten up the strict diet .
But that’s a whole ‘nother story
I was on the 2700 mg of gabapentin per day. I was also a zombie. I am currently part of a zombie! Here is some input from my journey: I have a drug cocktail that works for me (most of the time) A combination of 300 mg gabapentin, 100 mg carbamazepine (Tegretol) and 50 mg lacosamide (Vimpat) I take that combination 3 times a day and at night these dosages are increased by 2. Also I throw in clonazepam as needed. These dosages are the norm and depending on the day they are either increased or decreased. I have not seen any UTI problems.
My suggestions would be to spread out your meds during the day, along with supplements, vitamins etc. Like instead of taking 3ea of the gabapentin at once string it along.
Get some walking poles to help with your balance. Like ski poles but you can put rubber bottoms on them
Takewarm baths - without bubble bath
Forget the housework.
I wake up in the morning and feel almost normal. I get a twinge and need to take meds. I hate the foggy head. I hate not being able to speak like I had a brain. And if I have a real big outbreak, I take so many meds I am a zombie for 3 days.
The change in seasons is not my best friend for my TN,
My Mom’s favorite song from Frank Sinatra:
“Each time I find myself layin’
Flat on my face
I just pick myself up and get
Back in the race
Don’t get me wrong. I hate TN with every cell in my body.
Hi! I suffered for approximately 9 years with TN1 and TN2. Gabapentin was the first medication I tried, but it did not help me then I started on Tegretol/ Carbamazepine. Through the 9 years I also tried many other mediations along with Tegretol long with some alternative treatments. I finally had enough suffering thus I sought out Microvascular Decompression (MVD) surgery. I had surgery in February 2018 and have been pain and medication free since May of 2018. If this did not work, I was considering giving up my career in healthcare and go on disability. I am so grateful to my neurosurgeon, Dr. Raymond Sekula. He is currently practicing at Presbyterian Hospital -Columbia University, New York. His practice is devoted exclusively to cranial nerve disorders. You can google him for more information.
Best of wishes for some relieve soon.
Wow Nancy. That is so wonderful for you. I will check out Dr. Sekula as I am in MA. I would so love to be pain free and medicine free!!
Dr. Sekula is great. I did a lot of research before choosing him. He was at UMPC when I had surgery. I traveled from Rockford, IL to Pittsburgh. Everything went very smoothly. He is a very compassionate and kind physician. The surgery gave me back my life.
I’m so sorry for the state you find yourself in at the moment. The pain is unbearable but sometimes the side effects of all these meds seem worse!
I was on pregabalin at various doses for nearly 6 years and it’s worked quite well for me. At some point I added 10 mg of eletrolet. Those drugs stopped working for me recently and I switched to carbamazepine and vimpat. That provided some relief but not enough so I started Botox. I’m still struggling and am strongly considering MVD at this point.
But back to the pregabalin… I need the original Lyrica as the generic didn’t work well for me. Side effects- I did have some fluid retention but nothing extreme, and I tend to retain fluid in my legs anyhow. My word recall and overall executive function were a little lower than before I started any meds, but they are worse now on my current regimen. I find that anytime I take a new medication and for a few days after changing a dose I feel dizzy, tired etc. It never lasted for long. ( Now, I’m nervous to drive on a long drive because I never know when I’ll get dizzy on the carbamazepine and vimpat!)
Overall I had far fewer and more tolerable side effects on the pregabalin.
Good luck getting relief from the pain and the medications!!!
Praying you get relief soon.
Thanks, Medica. I did see a urologist in November last year and he was supposed to be arranging a cystoscopy for me but I’ve never heard back. I don’t know if I am on a waiting list or he just forgot to do it (I’m in UK, so NHS waiting lists are very long at present). I should chase it up but I’m deeply afraid of the cystoscopy! But this pain might drive me to it finally. I feel in my gut that I have an embedded infection, which has been undertreated, that is just lurking and then flares up with things like Gabapentin, which does increase your likelihood of a UTI. I’ve got a doctor’s appointment tommorrow and I’m going to ask to try Pregabalin, and hopefully get an antibiotic too.
Thanks, Pontoosuc. Oddly, I was wondering if I could spread my meds more rather than taking them at the three allotted times, but they say on all the ‘how you should…’ that you should spread them as three doses, so I wondered if it would turn me into a pumpkin or something if I broke the sacred rules. I was actually thinking of putting a post up on whether people sometimes do different dosing. I don’t have a bath unfortunately, I wish I did, but I know exactly what you mean about weather changes.I hate them.
Hi Nancy. Yes, I started out on Tegretol and it is definitely effective, but terrible side effects. I actually had a VERY slow allergic reaction to it (erythema multiforme rash) along with low blood sodium and neutropenia, so it didn’t really hit it off with my system. I may end up having to use it again though if I can’t find anything else. Unfortunately I’m in the UK so your doc would be no use to me, but I am very glad to hear the operation worked for you.
Thanks, Syland, that was really helpful. I’ve decided to give Pregabalin a go. Now all I need to do is get them to help me out with these cursed UTIs!
Wishing you good health and pain free days! All over!!!
Perhaps you could try the Interstitial Cystitis diet in the meantime and see if it helps ?
And try Pyridium (aka Azo -Standard in the US ) for bladder pain ?
Pyrdium is available over the counter in the US at a 95 mg dose
It can delay caffeine being metabolized so cut back on tea and coffee if you already have problems with insomnia.
The IC diet is not hard —it’s just very very bland
Your pizza has to have a white sauce —not tomato sauce e.g.No vinegar.No white,black or red pepper .Some patients even find specific bottled waters a problem
The IC Diet may not be enough to cure your pain .You may need meds like Elmiron,opiates,Benedryl etc.
IF the diet helps that is good evidence to support the IC diagnosis.
There are classic lesions for IC that can show up on Cystoscopy —-but if they are not seen it does not mean you do NOT have IC .It’s just helpful confirmatory evidence.
Many people think that the current way Urine Cultures are done miss the organism behind IC pain and argue for a return to broth cultures .Like you I was convinced there HAD to be an infection.
But Dr.Evans, who is not a dogmatic Doc. in general ,is convinced they have ruled out Infection as a cause of IC pain
I hope they find a very benevolent cause for your bladder pain .
IC was its own special Hell .Bladder pain will make strong men ( and Women) fall to their knees.
But mine got better .
I hope your’s does.
P.S.—-I found that 5% Lidocaine patches applied over my bladder helped the pain along with the previous mentioned meds .
Haven’t a clue .But I prefer Truth over Dogma and they truthfully did help .
I empathize with everything you are going through. I live in Toronto, Canada and we have a supplement called D-Mannose that can prevent UTI’s and also treat them. I hope you can find this and I wish you all the best.
I haven’t been on in a while but noticed your post today. I am also in the UK. I used to struggle more when I took my meds all at once in the morning, but now divide them into 3 and take them throughout the day which does help, I have GPN and had MVD surgery back in 2014 but with no success unfortunately, I have also been at the stage where I wanted to end my life as this is a horrendous disease to live with and can be very debilitating ! The very first med my Neuro consultant talked about was Carbamazepine but I wasn’t keen as it is very toxic and has awful side effects, he then talked about the one I am on now and have been since the beginning (2013) Oxcarbazepine, similar to Carbamazepine, this works well for me and its not as toxic, I have also tried many others at the beginning like Gabapentin along with others but to no avail. If I was you I would strongly recommend talking to your GP re Oxcarbazepine and give it a go! Good Luck and stay strong !!
Many moons ago I had a role in which medication dispensing was a big part. Due to the workplace we had to have training and certificates for everything. Some of the medications that we were responsible for were considered ‘Restricted Substances’ especially for the clients with communicable diseases. Some of these meds needed to be administered at exactly the same times every day. The theory behind this was that by having these set times we maintained a level of therapeutic dose rather than the client having peaks and troughs in the availability of a therapeutic dose in their systems.
Gabapentin was one of the many, many meds I’ve been trialled on and for me, personally, just horrible. I felt disassociated from myself, really odd. I spoke to the dr about it and his response is one I’ll never forget: "We’re not really sure how it works, but for some people it’s a bit of a wonder drug, for others…not so much’. Seems I’m in the ‘Not so much’ camp. But that line "We’re not really sure how it works…’ surprises me, but its seems everybody’s interactions seem to be different. But be assured, you certainly are not the only one having some odd interactions.
Merl from the Modsupport Team
Hi again -Woman With The Elect
Just wanted to follow up on your concern that the Gabapentin may be causing the bladder pain .
I found an article in the Medical Journal NEUROLOGY about a patient having Dose Dependent reaction to Gabapentin that manifested as an Overactive Bladder causing urinary frequency and urinary incontinence .It was in the April 15,2021 issue.
Mention that article if your Urologist does not take your concern about an association between your pain and med seriously .
An overactive bladder might be in enough spasm to be read as painful .
Not trying to ignore any other issues Neurontin is causing you .
I just do not want anyone to go through the pain I did with IC.