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Five months post PSN-update Five months post PSN-update

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Unread 01-07-2004, 04:32 PM
Five months post PSN-update


I detest Neurontin. I started at 1800 mg and then increased to 3200 mg, but I refused to go higher. Generally, doctors won't prescribe more than 3600 mg of Neurontin, but you can go up to 6 GRAMS per day, of which both my pain management specialist and rheumatologist were more than willing to up the dosage further. The problem is that 80% or so of the patients on Neurontin are taking it for non FDA approved purposes. There are relatively low numbers of patients with epilepsy in the United States, so why do you think they [drug company] pushed for doctors to prescribe Neurontin for other uses? That's right -- To make money. Even patients with epilepsy rarely go above 1800 mg of Neurontin.

Fortunately, I was only on Neurontin from August to December, but in that time, it had terrible effects. In the beginning, it distorted my vision and hearing, and I had hallucinations, as well. As time went on, the long-term effects set in. I lost my memory and went from a Dean's List student in college to a failing student -- a first in my life. From there, I started having blackout periods that would last half an hour or more. The problem is that I was semi-functional in this state. Once I lost consciousness, I had no control over what I was doing, and I had no memory of what I did. I could balance a checkbook, write papers, shower, and do so many other things. The clues I left behind are the only proof of what I was capable of doing in that state. Once I felt the blackout period coming on, I couldn't stop it either. I truly felt trapped inside my body.

The Neurontin also affected my mental health. I found that I lost my temper easily, and I had no remorse for being mean and rude to others (this is common amongst the patients who did not react well to Neurontin). I know for a fact the drug caused me to have suicidal thoughts (but not suicidal actions) because I am passionately against suicide. My husband-to-be is bipolar, and we have dealt with his suicidal thoughts and/or actions in the past. There is no way that I have or ever would consider suicide as a feasible option. What is really sad is that doctors are putting patients who are bipolar on this medication, and that is a potentially devastating combination.

Everyone that was around me while I was on Neurontin can vouch that I was a completely different person. Pain management put me on this medication to use in combination with Elavil for chronic pain. The Neurontin never did help the pain, and it was difficult to wean myself off the drug. The drug company will not admit that Neurontin is physically addictive, but I have to disagree. In a time where I knew the drug was harming me greatly, I would take more and more of it. The weaning process took about a month, and I went through withdrawal symptoms during this time. And if you can believe this, I was one of the lucky ones who were finally able to beat this drug. Unfortunately, I haven't gotten back all that I lost to this medication.

I know this sounds terrible, but at the same time, I know people who are on Neurontin (mostly low dosages, though) and have gained part of their life back because of it. I'm not completely against the use of Neurontin, but I think the patient should be better warned about the potential problems with this medication. Even so, this can happen with any other drug.

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Unread 01-07-2004, 04:41 PM
Five months post PSN-update


I appreciate your kind thoughts. I hope the PSN works, but I have a feeling my pain from bleeding will not be resolved until I have a hysterectomy. It's even more tempting seeing my other family members who have endo go on to have a good quality of life. I know that all of my pain cannot be relieved from a hysterectomy, but I would be satisfied to never have a period again. They try to use continuous birth control to stop my periods, but it has the opposite effect on me. However, I couldn't get a hysterectomy if I tried right now. I'm 22. I really want to have a child with my husband-to-be, but sometimes I don't know if it's worth it anymore. The pain is killing me. :cry:

Unread 01-07-2004, 06:07 PM
Five months post PSN-update

Dear Christy,

I do hope you at least have 50% relief with the PSN... I will have to try to scan in the studies on the efficacy of PSN with Endo removal... The study results showed significant decrease in menstrual pain/midline pain over simply having endo removed. I do think unfortunately that it will take time for you to know. The Mayo doctor told me months.

My wish for you is that you are able to have the children that you hope for... I struggled with this for a while but under the care of a doctor who deals with endo patients and right after surgery I was finally successful. And while I was pregnant (after the first trimester) I had no pain. For me it made it worth enduring the pain etc. I do hope it is the case for you.

I am sorry the neurontin had such bad affects for you. I could take very little of it without my brain turning to complete MUSH.

I am hoping for a good outcome for you with less pain.

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Unread 01-07-2004, 06:15 PM
Five months post PSN-update

Dear CHristy..

I missed your question about Neurontin... I could not tolerate it even at a very very low dose. My brain felt like fuzzy porridge for the two weeks I took it. I was completely unable to function normally.... even think straight.

I am a small person... I am 5'7" but only weight 105 pounds. SOmetimes I think I have a hard time with drugs because I am so little with a low body fat. The pain dulls my appetite for sure... but I was not big to start with (before the pain became constant).

Unread 01-07-2004, 06:24 PM
Cristy's Neurontin experience

What a horror! If anything, let it be a lesson to all of us, as my "pelvic physical therapy" was to me (if anyone out there has benefited from it - wonderful; in my case, it was highly unnecessary, painful, and an exhorbitant, unreimbursed expense). We have to speak up when we know that a treatment or med isn't going well for us, or when we feel we're being brushed off or patronized. We have to stop appeasing authority figures by going along with them unquestioningly. I write this as I'm putting together information for my pain dr.'s office so they can help me fight the pharmaceutical fulfillment company that shorted my recent pain rx. As they said in the movie Network, "I'm mad as h*ll and I'm not going to take it anymore!" Which is why I'm glad you filed the drug report - good for you.

Wishing a painfree, restful night to all, and lots of

((HUGS)) from

Unread 01-07-2004, 06:26 PM
Five months post PSN-update


It's hard to really comprehend what happened with the Neurontin. I can have the most difficult time trying to understand the simplest of things. It's frustrating, because I know that at one time I was an intelligent person. I listen to the people who were around me while I was on Neurontin, and I just don't remember myself being that ... different ... but I suppose I was.

It did other things to me, as well. It took my appetite, but of course the chronic pain has something to do with that, as well. I lost close to 30 pounds prior to the surgery.

I finally started bleeding, but I have a feeling the blasted Ortho Evra was battling the uterus' need to bleed after the surgery. I spotted for the last two weeks, but now it's full force. I bleed so heavily, but I've never had a problem with anemia, thank goodness. I would love to be rid of this bleeding ... the clots ... the chunks of uterine lining ... Sorry to be so graphic, but I literally have chunks of lining pass, as well. So far, nothing is capable of relieving me from that kind of pain. I'm lucky if the Percocet will at least make me sleepy so I can try to sleep through some of the pain.

I just wish it didn't have to be this way, but don't we all?


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