Am I the Only One Who HATES this drug? Neurontin Nightmare...

[Snickie]

And btw, keep in mind while you read this, i was a lawyer -- at a big firm -- trying to practice law while this was all happening.  You can imagine what it did to my career.  Anyway, I was put on a massive dose of Neurontin and seemed ok at first (started smaller, gradually added more and more). at first i didn't notice much...maybe a little dippy and klutzy.  But i tend to have weird reactions to things (like i've heard a lot of people gain weight on Neurontin -- I lost weight like crazy...could hardly eat or sleep, in fact).  Instead of it making me sleepy or relaxed, i felt completely tweeked and eating and sleeping was simply not possible (and what snippets i had were filled with crazy nightmares and provided very little rest).  I'd get so worn out, sometimes it would feel like my heart was going to burst right out of my chest...or give up, in one big exploding splash.   I constantly ran a fever (i was left on this drug for almost 12 months).  My sleeping heartrate was measured by a cardiologist  to average 137 beats per minute...resting/sleeping! (as proven by a hospital test where i was alsleep and NOT under stress)!  My heart rate normally is half that high.  I would get 'world salad' and my sentences would come out all jumbled.  I stuttered.  I had  horrible 80's pop music phrases (or worse-- horrible dark thoughts...or maybe that isn't worse? :-) looping through my head over and over and over (ad nauseum...or should i say, ad INSANEUM).  As you can imagine, my writing skills (crucial to my work) were suffering terribly -- i couldn't produce anything which was a solid, coherant, document no matter how hard i tried.   I did not become suicidal, but i'm not a suicidal person.  However, i did fixate on thoughts of death.  I wanted to die, yet not kill myself.  I wanted a button installed on my chest -- a toggle with an 'on/off' switch...and if, at the time, somehow magically i had a 'death toggle' on my chest, i would have SOoooooooo happily switched it OFF.  I would fantasize about my death toggle for hours on end.  I'd actually pray for a death toggle to appear on my chest so i could throw the switch and be away from that agony.  And i have never, never been like that. Not in my whole life -- no matter what pain or tragedy...never.  Worst of all, i had a new kind of pain (and i already have horrible pain and migraines and bleeding kidneys, etc.) but this was just unbearable.  It felt like my entire skin was on prickly hot fire from the inside out.  Especially in my legs -- my lower legs felt scorching.  It would hurt so bad, i'd lay in the bed and squirm and squirm...and my poor husband would ask 'what is wrong? or what can i do?' and i couldn't even get a complete sentence out to answer him.  I'd just end up stammering and sayiing some nonsense usually including 'can't! and hurts!' (you get the picture).  And, this burning under my skin everywhere on my body...even my hair burned...and my legs were scorching from the inside --- this is the thing which made me wish for the 'death toggle'.  At the time, i did not realize the Neurontin had an ability to put morbid thoughts in one's head -- i simply thought i wanted to flip my death toggle because i couldn't stand the burning anymore (nor the lack of ability to explain it to anyone so they would understand).    I went to doctors, hosptials, etc., NOBODY knew what was wrong with me (i'm ashamed to even say what they said to me...but some of them mentioned psycholgical issues, much to my horror and humilation).  So they left me on the Neurontin for months and months and months.  Finally, a year later, one beautiful, wonderful angel, my Dr.S, she studied all my meds, their effects, and the consequenses if any of them had gone allergic or toxic in my body, etc.  And low and behold, a toxic level of NEURONTIN does give a fever, does raise heart rate and give palpatations and does cause some of the other symptoms i had.  Of course, not all my symptoms were mentioned in her book about the 'adverse reactions to toxic levels of certain drugs' because the Neurontin portion of her book was sorely lacking information.  I assume partially because it was such a new drug and there was so little info about it -- and almost no info about it when it goes bad/wrong (which is why no other doctors/nurses...anybody... spotted anything wrong with the Neurontin inside me).  I've seen lawsuits now against Neurontin regarding the fact that it causes thoughts of death and/or suicide as well as a smattering of my other symptoms...even some of my weirder symptoms, but still have never heard anything about the feeling of my skin being on fire from the inside (especially my legs -- especially my lower legs).    Post Neurontin, i still have episodes of that weird, painful buring (mostly if startled or something -- seems to be linked to an adrenaline rush maybe? but it can happen SO easily...even just watching a fun, scary movie...which i normally enjoy very much).  I still have bouts of stammering.  I became infertile for 6 years after taking neurontin.  My thyroid got all screwed up.  My heart, from being at major aerobic levels for 11 months, was also affected.  I still have frequent palpatations which can get so bad as to elicit chest pains (if the palpatations last long enough...sometimes days).  I went to a cardiologist and now i have a prolapsed mitro valve in my heart, too.  There is other stuff, as well.   and i've tried to find anyone to speak with about this stuff, but i don't know who to turn to.  Has anyone else ever had these things happen?  Is anyone doing anything about this?  They act like Neurontin is so safe, and i simply cannot believe that. In fact, i know it isn't completely safe!   i live with negative effects left by that drug every day of my life. I can't work anymore for a few reasons -- but the Neurontin is definitely one of the factors that pushed me toward disability.    Never in my life had i ever felt a sensation like I did while i was on Neurontin -- that of my skin on fire from the inside.  Not until Neurontin, but now i feel that sensation regularly..and i'll never forget it...i know for a FACT that is where it came from.  So, anyway.... After my doctor took me off Neurontin, it took a couple/few weeks to get my heart rate, fever, etc., back to normal.  Some things took much longer.  It took a year or two to get to my natural body weight again and it took six years to become fertile again (yippee...now that i'm 40... phooey).  Also, after the Neurontin year, my doctor noticed blood in my urine...so she did a test.  Now, my kidneys leak blood all the time (yes, i pee blood all the time now)...and that is not solely from the Neurontin, because i had a kidney birth defect, but it had never developed into this next "bleeding" stage until after the Neurontin Nightmare Year.  And there are other issues which i still have to this day ...although i'd call them echo's...since none are so violent or long lasting as they were during the worst of it while i was on the highest doses of Neurontin.    
Again, there's more, but i want to hear someone else's story before i go further.    any info would be desperately appreciated.  All the best, Xtine

[shanaree]

Hi you can just call me exhausted!  I am groggy and my thoughts are foggy!
I have devastating nightmares EVERY TIME I close my eyes!  So much so that I actually wet my bed.  Oh how humiliating!!!  I have never!  I also have blurred vision, can't concentrate and just had the worst migraine in the history of me having them.  I want to cry all the time...and I am the one in the family that never cries.  I hold everyone else together. What's happening to me???  Feels like I'm falling apart!!  I just wanted my leg and back pain to go away!  Not to fight monsters and demons all night every night!!  I take Gabapentin 3 times a day.  I CAN NOT  make it through a shift at work without it!!  I am allergic to Nsaids and aspirin...all anti-inflammatory!  I've had steroid shots (so many I can't count anymore) since 2012!  I have had facet shots as well as radio frequency ablation....I am at my wits end!! Does anyone know how to help me!?!

[shanaree]

Hi you can just call me exhausted!  I am groggy and my thoughts are foggy!
I have devastating nightmares EVERY TIME I close my eyes!  So much so that I actually wet my bed.  Oh how humiliating!!!  I have never!  I also have blurred vision, can't concentrate and just had the worst migraine in the history of me having them.  I want to cry all the time...and I am the one in the family that never cries.  I hold everyone else together. What's happening to me???  Feels like I'm falling apart!!  I just wanted my leg and back pain to go away!  Not to fight monsters and demons all night every night!!  I take Gabapentin 3 times a day.  I CAN NOT  make it through a shift at work without it!!  I am allergic to Nsaids and aspirin...all anti-inflammatory!  I've had steroid shots (so many I can't count anymore) since 2012!  I have had facet shots as well as radio frequency ablation....I am at my wits end!! Does anyone know how to help me!?!

[Worldofpain]

Hi there, I am currently on neurontin, gabapentin where I am from, and it makes me really hyper and can't sleep, and oh the death thoughts I have are similar to yours, not wanting to actually commit suicide, but just thoughts of death, popping into my head out of nowhere, oh and not just me, but everyone around me dying too, it's horrible, I suffer from high anxiety too, I tried to stop taking them and boy what a nightmare that was, I was so angry, stressed, and in pain (I am on them for a prolapsed disc) it was awful so I had to go back on them but am only taking 300-600mg rather than 900mg and have read on here magnesium may be an alternative so I am now going to try that, I suffered from depression before taking these but these have just increased the depression and anxiety and I have a racing heart and can't sleep, not only that but when I wake up I can't face breakfast or food for ages and I always used to have breakfast but the thought of it now turns me, never thought all these things were connected to the drug but after reading ur post I realise they are, oh and memory loss also.....

[scottmc36]

ive been on 800mg of neurontin three times a day for almost ten years now.  its being given to me as a mood stabilizer.  i swear by this drug.  when im not on it im totally depressed and in a dark zone.  neurontin makes me happy all day long.  i also take xanax, klonopin, and celexa.  but without the neurontin i would not be as stable as i am today.

[huntwc]

I have been on Neurotin since late July for anxiety.  My dr kept upping my dose and as he did I fell into a MAJOR panic/axiety/depression mode.   Panic attacks, crying, no hope, no pleasure, dizziness etc.  I called me sister in law (she is a Dr.) this past weekend at my wit's end and told her I was on Neurontin and how much...she told me to stop it ASAP...that it was likely the cause of this downward spiral I was in.  My pharmicist just confirmed this.   I stopped it on Saturday and this is the first day I do not feel suicidal...it is 12:30 pm and I have not cried yet today....that is saying alot...this drug is hell!

[Snickie]

Oh jeez...yeah...that sounds like Neurontin.  For some reason, most people gain weight and get sleepy, but like your 13 year old, i lost tons of weight (not in a good way) and had those same thought issues.  Looping thoughts -- dark thoughts, etc.  Does she have a small fever a lot?  Or fast heart?  Because i found that the fever etc., will get the doctor to listen to you, while the other stuff they might rather blame on something else (call it psychological or something).  Maybe keep monitoring her body temp ...cuz Neurontin also builds up in the body so the symptoms can get worse the longer you're on it.  A contstant fever, even if small, will get the doctor to listen.  And fever is one of the known bad side effects of neurontin so it points the doctor in the right direction.  Best of luck to you both.

[Jfrog]

I am so glad to find actual accounts of Neurtoin going bad.  Dr. said it couldn't be the meds but my 13 year old is on it fo rchronic pain in an arm and had lost serios weight, vision fades, irratinal thought and very dark episodes.  I am worrie dthat she will not be the same once off these-meds and they are telling me they are SAFE!!!

[ggreg]

Yes, Xanax is a cousin to the tranquilizer I take.  Sedatives, tranquilizers sort of generic names for the same thing, altho "sedative" I believe refers to barbituates....not sure.  Anyway, I wanted to tell you that hair loss is another side effect of Neurontin!  So, that is why you lost some hair.  I am a little worried about your heart jumping around...if you gained weight from the Neurontin, another side effect, once it comes off, hopefully your heart thing will stop.  But if you think about this for a minute, your interesting posts were sort of in "rant" style, that is, your heart is probably still running away with you.  The Xanax will indeed help that, but you might could do with a bonafide heart medicine, beta blockers are especially mild and slow it down, and this brings me to another idea.  Get your thyroid checked out next time you're at the doc's.  And keep track of your BP when they call it out at the doc office.  Try to do some deep breathing as often as possible, as well as lots of relaxing walks around the neighborhood.  Hang in, keep seeing your regular doc.  GG

[Snickie]

Hi ggreg:  I just wanted to add that my long response which i just posted (above) was meant to also respond to you (thank  you So much for your input).  The website wouldn't let me put two people in the "To" section above.  So, just so you know, i did post a big response to your comment.  Didn't want you to think i ignored yours :-)  because i am very appreciative.  I think you are right about the sedative thing.  Maybe if more info regarding the bad effects of Neurontin come to light and if doctors will acccept them as true, they will start to treat those of us who have lasting after-effects.  here's hoping!
Thanks again,
Snickie

[Snickie]

Hello, and thanks for the response.  Sorry i didn't mention the reason i was on Neurontin, i thought i was writing in the chronic pain section...this website is more complex than i realized.  I was prescribed Neurontin for chronic pain & breakthrough pain.  I've had two big car accidents and an accident at work. Together, they left me with lower back, upper back, and neck problems.  I've got an unstable C3/C4 and nerve damage in a number of locations.  So,i'm already on opiate derivitve pain meds(especially since i can't take anything else due to my kidney's since i have a congenital birth defect in my kidneys, i only have about half the kidneys most folks due, and a proclivity to get kidney infections,which happens all the time if they are stressed by meds, etc).  I can't take anti-inflamatories or anything like NSAIDS or Advil or even asprin because of my kidneys.  And the weird thing is, my stomach seems to want to protect my kidneys, because anything which is hard on my kidneys,my stomach wont tolerate anyway (i had a Celebrex nightmare, for example and a Vioxx debacle -- these were before the doctors realized my kidneys were not normal... and apparently it isn't a good enough reason to stop taking it when you tell them "Vioxx hurts my stomach so much, i feel like i've been gut-shot!"... then they say 'well, take it with more food!' ... then i'd try that, and end up having to report 'now i'm very full, but still feel like i'm gut-shot!"  and then i'm stuck laying in a fetal position for hours clutching my stomach... thanks,doc.).  Anyway, once my kidney problems were discovered after a big die-injected scan at the hosptial, that marked the point where the doctors finally had to admit that i'm pretty much stuck with Opiate pain meds (i know people don't seem to like them for whatever biased reason, but they are comparitively VERY gentle...and frankly, when you've taken them for 9 years, they do nothing except help the pain; i actually feel lightheaded if i take Tylenol cold formula...but when i take my Opana...zilch).  So, I'm limited as to what i can take -- i also have a lot of allergies (Sulfa, Imitrex, Tetracycline, Reglan, Levaquin, Amoxicillin, Penicillin, etc.) so giving me anything experimental is pretty risky.  I used to be willing to try anything,but having almost died from meds about 30 times, i'm very reluctant to be adventurous.  I tried the Neurontin because it was said to be so low in side effects -- and this was... oh... six years ago at least?  Now i figure it was so 'low in side effects' because hardly anybody had taken it for very long yet.  
Did it help my pain?  Yeah... a bit.  Certain types of pain felt more like a warm buzzing than a shooting or scorching pain.  And i guess since warm buzzing is preferable to scorching pain, i'd say, yeah, it did work in some ways.  But within a couple of months, the crazy started.  Another odd thing i didn't mention before -- just to expound on how WEIRDLY this drug affected me, after taking it for about 4-5 months, i stopped growing body hair!  I was bald over most of my body and my hair on my head got thinner (luckily it is really thick so it didn't go bald).  But i had no leg hair or arm hair at all.  Now, how weird is that??? And the thing is,i know that it wasn't any of the other meds i was on, because i take very few things (since i can't tollerate almost anything) and i'd been taking them before these issues started, and after they stopped (after i stopped the Neurontin, all the weirdness slowly ebbed away, leaving only these odd echos).  But, while on Neurontin, the pain, confusion, looping thoughts, death thoughts (eg: my 'death toggle fantasy), the burning skin, fever, racing heart, etc, was constant and got to be very severe.  So, there was no question at all that the Neurontin was the cause.  I turned back into my normal, sane, slightly-damaged-but-otherwise-happy-enough person within weeks & the improvement started sooner than that...probably 3-4 days and i saw little improvements...maybe even sooner (it is hard to remember now -- it was so long ago and i admit, i have not thought of it much since i got better, i just wanted to move on and never be back there again;it isn't a favorite memory of mine,as you might guess).  
So, comparing myself to you, it might be a totally different thing because i never had any seizures (although i do have massive cervical migraines...which i'm told is a form of CNS event...could be wrong tho)...but no seizures and i'm not a high anxiety person (unless my heart is going nuts and i'm internally combusting,etc,then i get a little edgy! :-).
Plus, i am very sensitive to medicines.  I've even had one doctor give me a tiny bit of something (in this case, a steroid) which he promised was too small for anyone to ever have a reaction to;"impossible"he even said.  And then for the next 2 days my heart rate was in the stratosphere and i was sweating and panting like a grayhound after a dog race).  After that,he was more careful with me.  He even halved the steroid dose during my next procedure (i still reacted... significantly, but less) and then halved it again in the third procedure.  At a quarter of a dose (a quarter of an original dose mind you, that was supposed to be so tiny, that it was 'impossible' to react to) now, i can only just tolerate it... although my heart still does get faster and gets all poundy for a few days after the procedures, just not so much that it is dangerous.  This steriod thing, btw, was in the form of steroid injections into the nerves in my back or neck ...i think they call it a nerve block?  Something like that?  But it wasn't a pill(in which case it would have been a MUCH higher dose & it scares me to think about that... but with the injections, the tiny amount they inject directly into the nerves, it is minute).
So, again, i don't want to scare anyone who is having a fine time with Neurontin.  If it works for you, that is fantastic.  I'm just trying to find people who can relate to what i went through since i personally don't even know anybody who ever took Neurontin.  And when I read most of the stories of people who took Neurontin, it seems like their only/main complaint is that they get a little sleepy.  But me, it made me absolutely wired and hyperactive...the total opposite!  I just don't understand.  I mean, i'm no doctor (i'm one of their natural enemies in the wild... a lawyer!  ha!  but i don't practice anymore anyway) but it seems to me like this:  for most people, maybe Neurontin dulls the activity in their CNS?  Maybe for me,it did the opposite?  Kind of like when you read the back of some boxes of antihystemines and they say "may cause drowsiness... or in some people, may cause anxiety and sleeplessness."  Clearly, the sleepy is for most folks, but some weirdo's like me, go the opposite way.
I'm only guessing tho. I wish i could find a group of similar stories.  I mean,what are other people doing?  Anything?  
Oh!  And one person did mention some sort of sedative (maybe it would help).  I bet it would help...but i don't have one.  I think i have something similar (Xanax) but i don't know if that is technically a seditive?  But, you are RIGHT,it does help.  In fact, it is one of the only things that helps.  It even makes that burning feeling go away faster and reduce in severity (my pain meds do NOTHING for it).  But, i cant take it too much.  I don't have enough of it, for one thing.  But even if i did, i notice that the more i take it, it seems like the less it works.  Maybe i need a stronger one.  I dunno. I just wish i had a time machine (don't we all!) so i could go back and just say "NO" to the Neurontin.  Alas,no magic wand at my disposal either...rats.
Thanks again for your kind comments/responses.  And of course, i welcome any further comments;especially from anyone who may have had any similar effects.
Thank you SO much.  You've been so nice to take the time.
All the best,
Snickie

[rsox34]

Why were you taking neurontin?  Why did a doctor prescribe it for you?  You never stated why you were taking it.


I find neurontin to be great for me--I take it to deal with high anxiety and potential siezures.

[ggreg]

I take Neurontin.  But first I took Lyrica (pregabalin), which is a cousin, they say it has less side effects than Neurontin.  But Lyrica was very expensive, so after a year, I HAD to switch to Neurontin.  I wound up with distressing nausea all the time.  So, I have considered taking Lyrica six months (after which when insurance drops out) and then Neurontin.  I do not like Neurontin, but it kills the pain in my lower back just as good as the Lyrica.  I also take opiate derivatives, but it doesn't touch the back pain, so I had to add on the Lyrica.  

If you continue to have various problems, presumably remnants from Neurontin, ask your doc to re-review your current meds.  Also, I take a tranquilizer, perhaps it counteracts what happened to you.  I'm sorry you had your experience, I have read where plenty of folks cannot bear that drug, along with a lot of others.  As for "going further" with what happened to you, I can say that what would really be helpful is if you could persuade medical schools to require a pharmacy course in which they teach docs to always review what medicines a patient is on if they're suddenly having a lot of "baseless" health issues.  I post over in the gastroenterology section too, and since my guts got tore up by a medication, whenever I respond to questions over there similar to my issues, I always tell them to review side effects of medicines.