neurotin sucks. (Full Version)

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pixidustpet -> neurotin sucks. (6/3/2009 12:52:29 AM)

neurotin.  helpful drug for seizures, also helpful for painful feet/legs caused by diabetic neuropathy.  *raises hand*  that would be me.

it suuuuuuucks.  and not in any way of the good!  its not working well enough to call it "working".  oh, it makes me loopy and dizzy and walk into walls...but my feet still hurt.  *sighs*  which means that my dosage is most likely going to be raised.

it also has side effects.  well, aside from making me loopy and dizzy and prone to walking into walls.  WEIGHT GAIN.

now...i'd been level at one weight for over 4 years now.  and i'd been slowly getting new wardrobe.  NEW clothes.

in three weeks, without changing my eating or moving about habits, i've gained enough to put me OUT of two of my new dresses.  i am so unhappy i cant stand it.

and i cant stop taking it without being tapered off.  *sighs*  this AND i'm now being tested for having sleepy adrenal glands that arent doing their job correctly.  bleh.

kitten, awake with insomnia and unhappy




debraV -> RE: neurotin sucks. (6/3/2009 1:26:33 AM)

pixidustpet.

debra can certainly commiserate with you about the side effects of neurontin. she also has neuropathy in her legs and has taken neurontin for more years than she can remember, although she did not start the fast weight gain until the doc switched her to lyrica back when it first came out (30 pounds in less than 2 months), she asked to be switched back to neurontin and her weight stabilized somewhat.

Not sure what your dosage is on the neurontin yet or how long you have been taking it, but it will work on the pain in time, to an extent..but do not hope to be totally pain free...just functional. debra is up to 2,800 mgs a day and asked to stop at that because she just could not take being any more "high" than she is at that level.

Yes, the highs and lows are awful. One dosage so hyper she can't sit still, the next so tired she cannot hold her head up. debra wishes she could offer more encouragement but going off the neurontin is worse. The pain returns to an unbearable level and one becomes an invalid again. At least with the neurontin, even if concentration and memory levels fall dramatically, sleep patterns are willy nilly, and the room tilts a bit and one staggers sometimes....at least it makes it to where one can walk short distances....at least for debra.

debra hopes you can come to terms with the drug and that it will help you, even if you have to increase your dosage. There seems to be so little that works for our condition.

well wishes,

debra{V}




pixidustpet -> RE: neurotin sucks. (6/3/2009 1:51:26 AM)

thank you debra.  i'm on 900 mg a day as yet, the doctor started me out on a "baby dose" as he put it.  i'm hoping the weight gain is leveled out, and i have an exercise machine on order, maybe that will help keep ahead of the issue.

but its not going to change the fact i cant  wear my wedding rings right now.  *sighs*  TheEngineer reminds me that he is in charge and he'd rather me be on the meds and taken care of than not with him any longer.  (i stick out my tongue then try to run lol)

i am not happy about the side effects, and lyrica is worse, from what my mama tells me (she was on it for shingles).  i will get through this.  i just needed to vent, and thank you for listening.  [:)]

kitten




thornhappy -> RE: neurotin sucks. (6/3/2009 7:53:11 PM)

Hi pixidustpet--

I take 900mg also (for migraines) but I take it before sleeping. I found that doing so decreases the daytime side effects.  Perhaps this would help?

thornhappy




pixidustpet -> RE: neurotin sucks. (6/4/2009 3:21:36 AM)

quote:

ORIGINAL: thornhappy

Hi pixidustpet--

I take 900mg also (for migraines) but I take it before sleeping. I found that doing so decreases the daytime side effects.  Perhaps this would help?

thornhappy



i'm supposed to take it three times a day to keep the levels stable.  bleh.  calling the doc tomorrow to see about either raising the dose so it works, or taking me off it.  one or the other.

but thank you for the suggestion!  :)

kitten




SavageFaerie -> RE: neurotin sucks. (6/6/2009 4:26:01 AM)

My dr in nyc before I  moved put me on it for my chronic muscle pain.

While its only been less than a month, I have noticed a huge change.  I can actually get up in the morning without the pain of my neck and shoulders giving me hell.  He put me on 350mg 3 times a day.

I have had weight gain, but also am on predinsone after a bout of pneumonia in the hospital. I just figured it came from that. Im on step down so will know after I get off that.

My sister has acute RA, she goes in for infusions, cant remember which one at the moment. Her dr put her on it and it seems to have stepped down her pain level.  She is still in pain and told me the dr upped her dosage.

For me its too soon to weigh the pros and cons considering the steroids in the hospital and the step down here.




sirsholly -> RE: neurotin sucks. (6/6/2009 4:30:48 AM)

My late husband was on it for nerve pain.

It was a nightmare for a bit, as the doctor increased the dosage too quickly and he had mental changes. It was not the fault of the doctor...some (most) can handle the increase...he was one that could not.
His dosage was reduced and increased much slower with good results related to pain control.




PanthersMom -> RE: neurotin sucks. (6/6/2009 3:16:40 PM)

i've been taking neurontin for a couple years now, only 200 mg tid, but it's made a noticable difference in my neuropathy pain.  i suppose having good control over my sugar level helps keep me on a low dosage and the neuropathy in check, but i'm not displeased with the results.  i have not experienced the weight gain some have mentioned.  could it be a combination of meds causing the weight gain?  i also have not noticed the "loopy" feeling the OP mentioned.  it might be worth your while to investigate drug interactions or the possibility it's just not something your body will tolerate.

PM




deliciousmorsel -> RE: neurotin sucks. (6/6/2009 4:49:11 PM)

I'm surprised anyone still prescribes Neurontin- it's a pretty famous scam! Neurontin only works for ONE thing- enriching whoever makes it. In fact, almost all new neuro-psych drugs only work on two fronts- making a lot of money for Big Pharma, and making the patient horribly fat/ cardiac issues/ skyrocketing chances of type II diabetes/ potential brain damage/ etc... But too many doctors are trained in programs so owned by pharmaceutical companies they think these are wonder drugs.

Neurontin is a huge marketing blitz driven sham that comes off the lab shelf as a panacea for something new every two or three years. The billions of dollars it generates by convincing doctors it does what it doesn't is simply obscene! You think Wall Street is outrageous? There are dozens of neurontins spread across all specialties of medicine. What's worse is that there are cases where the patient swears by the stuff; and there's always some other factor that explains it. Horribly expensive placebo is one. Another is that Neurontin is always touted as an add on to therapies already in place, so that's whats doing the trick.

Putting on a lot of weight aggaravates leg pain of any origin- so it's a damned if you do or don't thing. Some people do report success with Neurontin, but it always quits and backlashes. Because something else changes.

Diabetic neuropathy isn't something I know a lot about, I've done a lot of grunt work for an neuropsychiatric pharmacologist who's research is reviewing case files and databases to see what's the myth and reality about Neurological and psychiatric drugs over long terms in large populations. And it's well established in every country but the US that Neurontin is useless. This is the only country where it's still on the shelf. You can always do better, like a drug that actually works over the long term.

Since many of the same drugs are used in psych, neurology, and pain management I have picked up some information there- along with treatment for extensive nerve damage in the legs from a sociopath pretending to be a Dom and going along with some insane womans "revenge" for her Master flirting with me. (The master who dumped her over ten years ago) Blah blah blah... But I understand pain from nerve damage. And it's the same electrical noise as is found across the spectrum of bioelectricly haywire conditions from the mental to chronic pain. And academic MD's wouldn't call it a running joke if it had shown success. They'd use it because these are the guys who see the very worst cases. My ex boss didn't get a knighthood for being a slouch, you know.

There are old drugs that work well for such things, "dangerous"old drugs. Meaning, out of patent. The drugs aren't dangerous, they just don't keep a catered lunch coming to the office every day. Did you know that drug companies buy data on doctors prescribing habits from pharmacies? If the doctor quits writing for the drug, no free lunch. But there's never a free lunch, is there? Or a free trip to the beach in Spain. You pretty much pay for it in suffering or horrible side effects. But who goes to the beach?

You'll need to be insistent, pixiedustpet, tell your doc it doesn't work and it's time to go to something else. There's no need for you to suffer.

And I'm sorry to upset anybody- if the N pill works for you go with it, but you're very rare. And you may be settling for less than you could be getting.




pixidustpet -> RE: neurotin sucks. (6/7/2009 5:20:45 PM)

quote:

ORIGINAL: PanthersMom

i've been taking neurontin for a couple years now, only 200 mg tid, but it's made a noticable difference in my neuropathy pain.  i suppose having good control over my sugar level helps keep me on a low dosage and the neuropathy in check, but i'm not displeased with the results.  i have not experienced the weight gain some have mentioned.  could it be a combination of meds causing the weight gain?  i also have not noticed the "loopy" feeling the OP mentioned.  it might be worth your while to investigate drug interactions or the possibility it's just not something your body will tolerate.

PM


it may be you've avoided the loopiness and weight gain because you are on lower dosages, if so, YAY for you!  seriously!

i know some of mine is water retention.  my calves are tight and they werent before.  and i can tell in how i *feel*.

the doc asked me to stay at this dose till the next visit (the 22nd) and we'll see after that.  right now....am feeling entirely crappy.

kitten




MistressLavinia -> RE: neurotin sucks. (6/7/2009 5:28:38 PM)

Pixi, Ive had two different people I know who used neurontin, One my father who is diabetic and suffers from severe leg pain, it worked wonderfully, finally he could sleep at night.  He too took the drug at night, one hour before bed.  My friend was diagnosed with fibromyalgia and it was prescribed her reaction was much different, she was very depressed and her doctor took her off it immediately.  I think like with any drug your body has to adapt to it, thats why they have to wean you off it, its the same going on, your body has to adjust to the new drug.  In any case I wish you health and luck, with everything. 

Lavinia




pixidustpet -> RE: neurotin sucks. (6/8/2009 8:41:25 AM)

quote:

ORIGINAL: MistressLavinia

Pixi, Ive had two different people I know who used neurontin, One my father who is diabetic and suffers from severe leg pain, it worked wonderfully, finally he could sleep at night.  He too took the drug at night, one hour before bed.  My friend was diagnosed with fibromyalgia and it was prescribed her reaction was much different, she was very depressed and her doctor took her off it immediately.  I think like with any drug your body has to adapt to it, thats why they have to wean you off it, its the same going on, your body has to adjust to the new drug.  In any case I wish you health and luck, with everything. 

Lavinia



i have fibro also, but that isnt why it was prescribed.  [:)]

i'm doing just fine emotionally (granted, the mood swings from the perimenopause are a bit disconcerting!) but i just want some pain relief so i can get decent sleep at the moment, hee!

thank you for the wellwishes.
kitten




debraV -> RE: neurotin sucks. (6/9/2009 3:51:26 AM)

debra has a suggestion for anyone having to go to the higher dosages of neurontin, a method of dosing she asked for several years ago and had forgotten she still practiced. To reduce (somewhat) the loopy and feeling "high" effects of the drug, ask the doctor to prescribe a dosage that you can take 4 times a day instead of 3 times a day. It still maintains the medication levels in your bloodstream with a lesser shock for the the first hour or so of feeling exceedingly high.

Fortunately she is one of those people for whom the drug has produced amazing results. But it did not do so initially, not until the dosage was upped and upped gradually over a period of time, starting at 900 mgs and proceeding to 2,800 mgs a day. Some people take even higher dosages but debra begged to stop at 2,800 because the pain was manageable at that level and the side effects were becoming less manageable. There is a noticable increase in her pain levels and even the numbness level that neuropathy can cause if she is unable to take her medication for some reason. If one decides neurontin is not the right medication for them it seems it is important to go off of it just as slowly as one was introduced to it.

wishing everyone pain free days,

debra{V}




pixidustpet -> RE: neurotin sucks. (6/9/2009 2:15:14 PM)

thank you debra.  i appreciate that advice.  [:)]

i've a dr appointment in another 2 weeks, so we'll see what happens then (i expect a raise in the dosage level, absolutely) and hopefully get some sort of relief started as far as pain levels go.

kitten




pixidustpet -> RE: neurotin sucks. (6/13/2009 12:38:47 PM)

after the dr appointment on friday, the weight gain was 18 pounds.  in not quite a month.  *headdesk*

neurotin was doubled in dosage, and he took me OFF two other drugs that he didnt think were being effective that also cause weight gain.  (gee, former doctor NEVER told me that.  wonder why she's a FORMER doctor??)  so we'll see.  his stance is "this is going to take some time to get resolved.  and i ask you to be patient with me while we get you to a place of better health."

i can live with that.  he tells me WHY he's making certain decisions, WHY he wants me to do what he's asking, the SIDE EFFECTS of the drugs...i feel like i have some say in it, and he listens to me.

kitten




ShaharThorne -> RE: neurotin sucks. (6/13/2009 2:27:02 PM)

So its just working out now? Keep us updated from day to day, especially if you start feeling bouncy (which means it was the other drugs holding you back).




pixidustpet -> RE: neurotin sucks. (6/14/2009 7:57:51 AM)

right now i'm still in the "adjusting to the new dosage" phase.  i doubt i start feeling bouncy again (although my kids swear i do a mightyfine tigger impersonation when i come to wake them up...serves them right for staying up all night, i say!) due to other stuff going on.

i feel a nap attack coming on all the time the last couple of days.  i'm hoping that passes.  [:D]

kitten




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