Narcolepsy Forum Posting

Posted by drowsy on September 03, 2001 at 04:35:41:

Ok, I've been on vacation for a month so this posting is going to cover a few issues I've encountered within that time.

Birth control/trusting my doctor:
Ok, i've posted a few times before about my situation, so I apologize if some of you have read my story before.

Based on my sypmtoms (sleep attacks- mostly during my college classes, driving- luckily only one accident, cataplexy- mild, usually only when laughing) I took a sleep test. However, due to my normal REM sleep he ruled out narcolepsy but since I slept in every single nap, he diagnosed me with IH and put me on provigil. Its worked great but I find myself very dissatisfied with my doctor. First of all, I dont understand how I can have C without N. Second, he keeps telling me that if I got 10 hrs of sleep, I wouldnt have a problem (!!!!@#@$%! *resisting urge to smack him*).
Then, when he put me on provigil, he started with office samples, 3 weeks worth. He never warned me of ANY side-effects, and since they were samples, no pharmacist warned me either. I only found out that my headaches and other symptoms were normal by looking online after 2 days of pain. It also wasnt until I looked online that I found out that provigil basically makes oral-contraceptives ineffective. The pharmacy never mentioned anything and neither did he. When I asked him, he had to go look it up, then confirmed what I'd read online. (!!! I'm a young unmarried female... what if I had gotten pregnant?! On top of that, with the birth defects associated with Provigil, that would have been even more devastating). It worries me that he would put anyone on a medication without checking things like that. I had listed my birth control pill under medications on countless forms. When prescribing a new medication, one he doesnt know well, I should think he should be checking these things?!

I dont feel like I can trust my doctor for a good diagnosis. Every other doctor of mine knows his name and raves about his skill. (incidentally, however, when I mentioned the birth control problem to another doctor, she seemed pretty concerned).
However, talking to the technition who was gluing sensors to my scalp, he told me that in the 12 years he had worked there, there was only one other person being tested for narcolepsy. My sleep during the test felt rather normal, but i know i didnt kick my legs at all which I normally do excessively. As well, for the naps, I never take naps in my bed, they're always unplanned and usually in public. Allowing myself to take a nap was hard, as well as sleeping with all the machines in another room beeping, so I didnt dream during those naps as I often do IRL. I dont know how accurate the test was, I also dont know the difference between IH and N. The best definition I've found for IH is :unexplained excessive sleepiness. (ARGH!!, that HELPS!)
While I suspect my doctor's inexperience with N or many other sleep disorders besides apnea etc, I do appreciate his willingness to try to help me by putting me on meds. However, he seems to be doign a lot of guesswork. He keeps insisting that I need 10 or more hours of sleep, however, after the medication worked, he seemed to just shrug and say, well if the medication works then why push it, it seems like we have the right diagnosis. He is still pushing me to get 10 hours of sleep despite the impossibility of my living situation/schedule accomodating that... let alone the times I've tried and felt worse for doing so...
He never explained my diagnosis to me, in fact, I had to ask him since he never told me it was anything besides "definately not narcolepsy"... I am ready to question even that affirmation
On top of all that, he
I'd be interested in anyone else's thoughts on the matter whether its sympathy with my frustration and/or opinions about how everything is being handled, well: better than average though still not adequate, or awfully. I'd also be interested to know how other felt about similar experiences (though I hope there arent many and fear that there are) and if they found any hope. I know this is not the worst sob story about dissatisfaction with medical attention and I do appreciate that I have it better than many others.

Ok, I'm done ranting on that subject

Birth Control
I havent read too much on this site about birth control... It really frightened/upset me that my sleep doctor didnt even know about the complication with Provigil. After discussing it with my gyno, she was clueless. Since the drug was new, i had to wait while she researched it and called several other doctors to get their opinions. She still wasnt 100% sure, but she believed that provigil worked like anti-seizure meds which she HAD encountered before. If thats the case, then provigil wont work with oral birth control, but ANY hormone based method. She did say that some patients had been treated successfully with extremely high doses of the pill (like the original dose they came out with). She said that if provigil had the same effect as the anti-seizure meds, then the problem was that the hormones in the pill were being metabolized. Hopefully, at a higher dose, there will still be enough unmetabolized hormones left to be effective.
I'm wondering if anyone else has encountered more information or different information that I should be aware of. I also help that what I've learned will be helpful to someone else.

Deep Sleeper
I read some posts on deep sleeping and alarm clocks and someone previously recomended Sonic Boom or Wake Assure alarms... (unfortunately, the search engine wasnt working for me so I hate to ask a question that may have already been discussed)
I just got the Wake Assure alarm with the bed shaker. I'm anxious about using it often because I share a room. I figured the vibration would be severe enough and quite enough, but it turns out that the vibration is slight and the noise of the bedshaker is LOUD, so loud you can hear it from my front door, all the way across the house.
I've only been using it for a week and frighteningly, I shut it off this morning without any memory of it...
I could really use any suggestions... unfortunately, my shared living space doesnt allow for too much, i'm afraid to put the alarm across the room and risk annoying my roommate more yet simply putting it up high so that I have to sit up to shut it off isnt enough...
I really appreciated the help from you guys before about getting the alarm... its just getting me down that alarm made for the hearing impaired wont even wake me up...

Thanks for reading this- asuming anyone does that is :)
Dont know what I would have done without this site
-drowsy

Follow Ups:

• Re: Provigil, birth control, and alarm clock sb 12:02 9/03/01 (0)
• Re: Provigil, birth control, and alarm clock Année (Sleepaholic) 10:27 9/03/01 (0)
• Re: Provigil, birth control, and alarm clock Vera 10:07 9/03/01 (0)
• waking up is hard to doooooo shoonpie 09:09 9/03/01 (0)
• nocturnal hyperactivity? drowsy 05:30 9/03/01 (2)
  • legs kicking at night.. sadie 15:39 9/03/01 (1)
    • Nocturnal Myclonus Jeanne 11:01 9/07/01 (0)

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