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Hi everyone- I've been a lurker on this forum for about a year and a half now, and figured I may as well introduce myself. I was "diagnosed" with N more than two years ago (my general practitioner refuses to admit it, though she still writes me my prescription for Ritalin) and have been through various meds since then up until recently when I became pregnant and had to forgo them all. I've got a provigil allergy, HATE methylphenidate SR (anyone else notice a difference between it and Ritalin LA?) and was very in love with Concerta. My worst symptom was the EDS and I thought it was my only one until I started noticing I did have the hypnogogic hallucinations and that after getting a good scare I often had mild cataplectic attacks. I wish I had recognized these things before I went in for my diagnosis with the sleep doctor :(
I'm the only person I know in my area with N so it's hard to find people to talk to, I have so many questions I could probably type for hours, but I'll try to narrow them down :) Has anyone here had issues with their weight that they might attribute to their N? I hate to place all the blame on this condition, but now that I'm off my medication I'm so tired that often I'm not paying attention to what I put in my mouth, and when I'm sleepy I'll eat a lot of sugary things to try and "wake myself up" (never works.) Also, I'm way too tired to get out of bed to go exercise in the mornings, and too worn out after work. Also, does anyone notice moodiness/irritability when off their medication? I'm sure right after I stopped, that withdrawals were to blame some, but in general I am NOT a pleasant person to be around when I'm unmedicated and I get far too snippy with my poor daughter and husband :(
Well, thanks for listening if you got this far, I look forward to meeting everyone :)
-Samantha
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New Here- But Not To N Introduction
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http://narcolepsynetwork.org/forums/public/style_emoticons/default/biggrin.gifOh honey-yeah......I can so relate to so much of what you've written! I've written many a blog post on the whole weight thing-I do the same things you talk about. When I'm tired I go for sugar, even though I know it just won't work. When I'm scarfing down the crap food I know in my head that I shouldn't be doing it but there are so many times that I'm just too tired to care or deal with it. The only time I have to workout is the mornings but its really hard to make myself get up to do it. Nighttime workouts never happen-either I'm just too tired and worn out from the day or there's other things that need to get done. I have twin kindergarteners and I'm always feeling guilty about being too snippy towards them. It might be that they've done something they shouldn't have, or sometimes they're just acting their age but I usually end up barking at them and feeling terrible about it after. I've learned that apologies go a long way with kids-I never cease to be amazed at how easily my boys just say, "it's okay mommy" and smile at me when I apologize for going overboard. For me though, this all happens when I'm ON meds and just happen to be having a worse narco day for whatever reason. Some meds do seem to make me more agressive though.....
Dealing with any sort of chronic condition is hard-emotionally, physically.....so don't be too hard on yourself. Each day is a new day-if you had a horrible day or a binge-y day just get it in your mind to do better the next day. I've had to ask my husband to toss out certain phrases at me if I start turning into satan at home just to snap me back to realizing how I'm acting (I had to give him phrases because when I'm really snippy it doesn't take much to make it even worse by saying the wrong thing..lol...sad but true).
I think a lot of narcos have these problems, so you're not the only one if that makes you feel any better. Its sure not easy getting life and narcolepsy to play well with each other!!
Nice to meet you btw http://narcolepsynetwork.org/forums/public/style_emoticons/default/biggrin.gif