Neurontin-Hot Flashes & Pain Relief

[KAM]

Interesting issue with Neurontin came up during my current battle with cancer. Back in 1997, one year prior to my brain surgery I was taking Neurontin at 5400mg per day, 600 am/600mid/600pm. It actually made me hyper which is the opposite of what I heard everyone else say about it. When you go through chemo, you get really bad hot flashes and the side effects of the chemo drug Taxol and Neulasta (what they use to build your immune system back up) is incredibly painful. My oncology nurse told me after the first treatment that if it feels like an elephant is sitting on your chest not to be alarmed, she wasn’t kidding.

When they took the lymph nodes out my arm was (still is) numb from the elbow up and you would get the sharpest pain and no doctor could identify it. You’re on every narcotic pain killer out there and it doesn’t help. They put me on Neurontin of all drugs and the hot flashes went away, the pain in the arm went away and I had a backup to the Dilantin that couldn’t stay at a high enough level. Didn’t even need anymore pain meds and I was only taking 300mg per day. If it sounds like anything you’re going through (hot flashes/pain), you may want to look into Neurontin.

[KAM]

Just noticed a typo, it should have said 1800am/1800mid/1800pm. I basically took six pills, three times a day.

[Bernard]

Pfizer lost a lawsuit in 2004 over the promotion of Neurontin for off label use such as pain management:

pfizer - neurontin lawsuit

It seems that off label use of anti-epileptic drugs (specifically a relative of neurontin) has led to situations where patients were not advised on how to titrate off the meds gradually and this *caused* them to develop seizure disorders:

pregabalin caused woman to develop seizure disorder

[KAM]

That applies to us (those with E already) as well? Have you ever heard of the people that take Topamax only to lose weight, has there been any of the same legal issues there?

[RobinN]

From your knowlege Bernard, are the complications of coming off of seizure meds include those patients that haven't been on very long? Meaning one or two months...
I know we were not advised how to titrate. We were just told to stop taking the drug after two months. Finally by the fourth drug I am learning .

[Bernard]

As the article states - this is an area that is severely lacking in studies.

anti-epileptic drugs are powerful drugs though and it makes sense to try and help the body adjust by titrating down rather than throw it a huge curveball.

[brain]

It's downright crazy! I'll tell ya!

They instructed to titrate us slowly on anti-epileptic drug's
and if it doesn't work, to titrate us off, but
yet, come the video EEG - they either cut us off
cold turkey or hack us to death like a slaughter
house with hopes we will SEIZE! (And guess
what - we don't!)



But when they attempt to use anti-epileptic drug's for off-
label usage - guess who seizes?

[KAM]

Can I relate! I think I went through six full weeks of telemetry before they would operate. They took me off the meds cold turkey and in two of the tests I didn't have one seizure. There wasn't even an abnormal spike, nothing! After one of the sessions they tested injecting Dilantin into my hip to see if it enters the body at a quicker rate and I said such bad things. I told him I didn't care if it entered the body at a quicker rate, I would never do that again.

[Axa]

Dear Kam

>It actually made me hyper which is the opposite of what I heard everyone else say about it.

I also don't feel "zombie-effect" of the Neurontin anti-epileptic drug: my memory is as fine as ever, I'm not sleepy, slow or whatever. Even contrary, I should do with some more sleep ...

[Bernard]

Hi Axa! Nice to see you again.

[KAM]

Hi Axa,

We are among the few that get hyper! I keep having issues with vision and can't keep a theraputic Dilantin level for anything, I anticipated my neurologist saying I was going back on Neurontin but I guess we're going to wait. I agree, your memory is much better when you're on Neurontin. Do you take it alone or do you have to take another anticonvulsant with it?

[Axa]

@Bernard: Hi to you as well!

@Kam: till two months ago I was taking Neurontin (1800 mg/day) & Tegretol CR (1200 mg/day). Well, the combo worked well, but with some side effects (occasional double vision, losing appetite & weight, "drunken" walk). Since I was somewhat too slim, my neurologist and I decided to give up Tegretol.

Now I'm on old dose of Neurontin + Lamictal (150 mg/day). I feel great, not even one single side effect (with exception of insomnia, but I'm insomniac all my life anyway)!!!

In fact I'm quite a lucky girl since all anti-epileptic drug work fine for me - when it comes to seizures (I have partials). In fact, I have troubles just with side effects and now I feel really great. I love Lamictal, definitely. This drug seems as it has been developed exclusively to meet my needs.

[KAM]

That's great that you have it under control. The reason I asked is my neurologist felt Neurontin wasn't strong enough on its own. I did take it for two years on its own, once after surgery and then when I was pregnant. I only had auras, no seizures using it on its own. Don't know, maybe her experience is telling her that is isn't good on its own..