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..

[Ruth]

Hi Kam

Maybe it is Neurontin mixing badly with your cancer medicine. My doctor is slowly going to take me off of Neurontin. I have been on it so many years. It has made me real sleepy. I am taking 6 pills a day. He is going to take me off of it one every 3 months. We will see how it works.

[KAM]

Hi feast,

It is amazing how all the meds we take have totally different side effects for people. All done with the cancer drugs and I elected not to do the Tamoxifen (for 3-5 years)because it was causing all kinds of issues with auras. In a few weeks I'm going in for the reconstructive surgery so I'll more than likely go back on Neurontin for a while. It will actually take you eighteen months to come off Neurontin? You must have a very careful doctor! Do you have to take another med or is your doctor completely taking you off all meds?

[Kansas Educator]

Best of luck on your reconstruction surgery. I had breast cancer 11 1/2 years ago and reconstruction surgery a year later. I went with a TRAM flap reconstruction and have never regretted it. Painful recovery but good outcome. I didn't have to have chemotherapy but did take tamoxifen for 5 years (this was pre-seizures for me). Anyway, positive thoughts coming your way!

[Ruth]

Hi Kam

My doctor is just taking me off of the Neurontin. It has worked for me. He is going to increase the Keppra. I, now have an issue with Keppra's side effects. I am going to have to talk to him about it.

My doctor is cautious, but he has never asked how I feel being on Keppra. I am on so many medications that I do not know what medicine is causing what side effects.

[KAM]

feast, good luck trying to get the right combo and figuring out the side effects, it is always such a long process.

Kanas Educator, is the TRAM flap where they take the muscle from your back and move it to the front? If so, that's what I'm having as well. The doctor is only doing that on the right side. I'm sure it will not look great but something is better than nothing. I had three attempts at reconstruction after the chemo and surgery but my body wanted nothing to do with them. The fourth time has to work. It's been over a year for me as well. I had the PET scan a year after my surgery @ 11am and they said the results would be back in 48 hours when I saw my oncologist calling me at 5:30pm that same day, I didn't want to pick up the phone. I finally did and what he actually called me for was to tell me it was the cleanest PET scan he had seen from a stage 3 patient in years. We're Survivors!

[Ruth]

Hi Kam

They have been trying to get the right combo for me for 59 years. I am 65 years old.

What do the initials TRAM mean?

Yep, We're Survivors!!

[KAM]

Hi feast,

I don't know what TRAM means, I got my surgery report today and what I'm having done is a Right Latissimus Dorsi Myocutaneous Flap done so I imagine it's the same that Kanas Educator had done (the word Flap is why I think this). Good luck with your meds!