UnderTheRadar wrote on Dec 18th, 2008 at 12:06am:I'm afraid to even open my mouth on this subject, for fear of alienating myself from the ONLY group of people who understand what I'm going through, and I am truly grateful for this website...BUT...
We are not doctors. period. We don't know this person, or his medical history, or his allergies, or what has and hasn't worked so far for him. and yet everyone is so quick to tell him he is wrong, wrong, wrong for taking his prescription medication, and the general tone is that narcotics are NEVER okay for CH (or anything else.)
Mystina is right- there's a fine line between addiction and dependency. Who of us here on this board isn't "dependent" on at least one medication? And the last time I checked, every one of these CH meds or preventatives we take has its own laundry list of long-term negative side effects to worry about.
The thing that is bothering me is that so many people are being very quick to claim that they know more about this than this kid's doctor. That is a dangerous path to go down. I have no doubt that there is a treasure trove of information to be had on this site- but you cannot let that keep people from trying what works for them. Reread the posts; he's not being told to be careful and do some research, he's being told that his doctor is flat out wrong. Not a single one of you has even asked for the doc's name so you can look up his credentials.
I love you all like family after only a couple of months, and I'm so glad to be here; but for the record, I myself have 3-4 hour cluster attacks without ever having had anything to give me a rebound, and I have tried everything suggested on this board, and nothing has worked for me except Floricet, which has a mild narcotic.
And if you talk about quality of life, I cannot BELIEVE that any one of you would consider for one second that living with CH pain is somehow BETTER than being on narcotics. No offense, but you guys are starting to make me feel like some kind of dirty, low-life junkie, and that's the last thing I need right now when I'm dealing with K9's, finals, and a toddler.
This is exactly why I'm upset. You've phrased it all better than I ever could. I take Fiorinal #3 for my migraines, but that's not why I'm upset.
I'm upset because this whole board, except a few people, has completely disapointed me. I'm sad about it. I thought the board was better than this.
I, had honestly hoped that things would change around here, after what I saw during the political season. I'd hoped that wasn't the true face of this board. And now? I honestly feel like an idiot for hoping that it wasn't.
I feel guilty for even having opened my mouth, and brought this horrible crap down on Ohioterpes. If I'd have kept my mouth shut, and stuck to just PMing him, I'm sure this wouldn't have wound up being so unwelcoming for him.
This board is THE only place sufferers have to go. When that's the case, I feel like you should act like it. There should be standards. Expecially with this disease being known to make you want to kill yourself. I see no reason to make anyone feel unwelcomed, until they prove that they are a troll.
It's our responsibility to be kind to anyone, no matter what their choice of treatment is. We can disagree, but telling them that they are wrong for it, is in itself wrong. We shouldn't be judging. We should be offering our hands, saying that even if you choose this, it's okay. Let someone know the risks of any treatment, and then be at peace.