People.
Only three people responded to my LJ query on the gabapentin, and two out of three replies were negative, saying it does little to nothing for the pain. Two out of three replies said you can feel very drowsy/drunk, which is what everyone else is saying, too. Even taking it at night, one will wake up quite groggy the next day, so said Dr. Pham herself at my meeting with her last week.
Several people have said you cannot take gabapentin casually - you must ramp up slowly and taper off very slowly or it can cause seizures and other negative side effects. Several people noted zombie-like traits.
I even talked with one of the parents at the school I work for, cuz she’s a neuro-something professor at a local university. She also said one must taper very slowly off the stuff, and that the two big issues with it are suicidal ideation and heavy fatigue.
And then on Saturday, I went to a friend’s birthday party and found out his girlfriend just started taking gabapentin for cluster migraines. She was a total zombie and her boyfriend looked forlorn over it, but nothing else was stopping the cluster migraines, which were landing her in the E.R.
I read again about all the suicides associated with gabapentin, and I’m terrified of this damned drug.
At work today, I mentioned the drug to a co-worker who had suggested I try valium for the pain. I told her I’d tried that and also muscle relaxers to no avail. She asked if most of my pain was actually nerve related and I said yeah, my doctors think so, and they want to put me on neurontin. She thought this was a great idea, and balked at my reasoning for not wanting to try neurontin.
She didn’t know about the suicide risk but after I told her she shrugged and said to stay positive and Just Try It, See What Happens. I think she said she’d taken neurontin before, and it didn’t work out for her, but not for the reasons I was stating.
Ya know, I’ve been down that road.
First of all, she has a *totally* different condition than I do - it’s brain-based, not chronic pelvic pain-based.
Second of all, I’ve done the Just Try It, See What Happens bullshit at the request of parents, doctors, well-meaning friends, acquaintances and strangers alike.
It doesn’t turn out well for me.
But let me tell you why.
I’m diagnosed with Major Depression and have become suicidal on antidepressants and hormonal treatments alike. I’m not going to try out epilepsy medication (neurontin) or another antidepressant (cymbalta) cuz ya know, I think I already know how it will turn out. I need to go to school this summer. I need to have my own mental faculties in place - I can’t afford to be a zombie or a suicidal freak right now. Sorry. I’d rather live and suffer with endometriosis than die a wretched death due to medicinal side effects. In case you hadn’t noticed, I have tried a lot of medicine and treatments in my 25 years of dealing with this illness. I have learned to recognise MY gut feeling on a course of pain management, and I have not always trusted my gut feeling, and I have suffered for it. My gut feeling is usually correct. Other people’s suggestions on my course of treatment are usually incorrect.
After ending my convo with my co-worker (who incidentally has had this attitude with me before, when I was going through repeated sinus infections), I felt angry.
I know she means well. I know she has no idea what I go through. It’s not her as a person that I’m angry at. It’s the ignorance and acting as an authority on a subject one really knows nothing about in all circumstances that really sticks in my craw. It’s a trigger, a button, a pet peeve.
To quote from O-Ren Ishii in Kill Bill:
The price you pay, for telling me what to put in my body, or telling me with authority how to successfully treat this illness in my body, and expecting me to blindly obey is,
I collect your effin head.
Now if anyone has got anything else to say, NOW’S the effing time!
Thank you.