Narcolepsy Forum Posting

Posted by sleepykitty on February 03, 2002 at 03:19:11:

In Reply to: Re: Lucky you! posted by ExhaustedMom on February 02, 2002 at 20:29:18:

Of course I realize that there are opposing viewpoints, opinions, and each of us has our own frustrations and crosses to bear. I respect the diversity of those presented here. And I know that something I disagree with today may be something that I change to support later. But, my post was to warn about the danger of self medicating. I too read TR’s post thru several times. Those of you who responded to this string have been reading for sometime and kind of know the ins and outs of the different ones who frequent this forum. What about the high school student who happens upon us and gets the idea that there is no harm in doing what they think is best in regards to how much to take of their meds? Or a 65 yr old who has numerous chronic health problems that would likely be exaggerated by increasing dosages w/o a doctor’s advice. Would the original post have caused them to go w/ the first take we had in believing the suggestion that these meds are to be used as the patient sees fit?

As regulars we know that discussions of meds and dosages here are for informational and educational purposes, not for a suggested “try it and see if you like it”. They help us to know what is out there and how and when others take it , what combos they use, what reactions they incur, making for good material to discuss options w/ your doctor. But, there are so many factors that aren’t apparent in the examples of dosages given here. For example, Big Sleepy is one of the few who has given his height and weight. I know that he is a male and that he is about two of me. If I were to take the meds he takes based on the assumption that we suffer from much the same symptoms, I would be in bad shape pretty quickly. Likewise, my meager dose of Provigil would not likely put a dent in someone else’s EDS. (Oh, that’s right, it didn’t for me either.) But I would much rather leave it up to a *competent* doctor to give me guidelines for adjusting meds because they have a lot of knowledge about effects, interactions that I have no clue about. And, I would prefer to have a cautious doc who starts out slowly until he sees how I’m going to do on a med, rather than one who says there is no harm in starting out at the highest dosage.

Now, I do stress a competent doctor in that statement, and from many of the posts it doesn’t sound like the competent ones who know how to treat N are easily found. My story is not one w/o frustrations, as 20 yrs ago I approached my family doc about my belief of having N. He told me to exercise more and if I didn't fall asleep standing up then I didn't have N. Didn't seek any more treatment and went it alone all this time struggling thru school and work until end of 2000. I stress being well informed and not settling for a doctor who isn’t. If I am given advice from a professional and don’t believe they are considering the situation in giving their advice, I am outta there. As you well know, I am very much for asserting oneself to ensure that one’s needs are being met-- that goes for most things in life. I am also very much an advocate for being self aware of what your body needs and finding a doctor who listens to you and takes that into account, as we are the experts in knowing us. If your doc doesn’t listen I’d suggest finding one that will. Even in my charmed life of treatment, I had 2 duds and then a great doc who wouldn’t believe that the impairments caused by Provigil were also noted by others, and that it wasn’t just that I wasn’t regulating my sleep schedule adequately. Based on that false belief, he also did not properly represent me in the issue of suggested accommodations at work , which gave my former employer a heads up in the legal battle that has ensued. (Not enough for them to beat the rap though.)

Although I may not have experienced the trials of having to educate doctors who are supposed to be the experts, I can relate to the same frustrations in trying to educate managers, attorneys, gov. officials, etc. I know TR must be very frustrated, and I do not want them to feel I was putting them down for speaking out about the problems they’ve experienced w/ their own treatment. But, I do not feel that the post was an appropriate expression of frustration as it could easily have been construed as being advice to take whatever one feels they need. Nor do I feel like my response was heavy handed in pointing out the danger in what was stated. SK

Follow Ups:

• Re: Lucky you! ExhaustedMom 10:16 2/03/02 (1)
  • I'm okay sleepykitty 19:00 2/03/02 (0)
• Re: Lucky you! Big Sleepy 07:01 2/03/02 (1)
  • Re: Lucky you! sleepykitty 07:05 2/03/02 (0)

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