twitch12

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  1. The lower dose didnt do much for me, I guess i felt a little more energetic during the day but nothing major. The side effect I complained about was actually just the fact that I didnt sleep at all my first 2 nights on it. I was already at the time on such a bad sleeping schedule of going to bed at 5am that when I started taking the Xyrem at 11pm every night I basically just tripped and had hallucinations for hours. I reported these to my doc and he upped my dose! I dont really feel like I'm ready to say the drug isnt good for me, its more that I think the titration might be an issue and I'm worried that thats whats causing the side effects to be this extreme. I was only on it for 3 days before I went to 3.75mg. Of course Im aware of that possibility though...
  2. I'm sorry to add to the endless pile of Xyrem posts. I promise I've scoured through searches hoping to find an answer to my question before I posted this. Tonight will be my 6th night of Xyrem, my doctor increased my dose from 2.25x2 to 3.75x2 after 3 days because I complained about some side effects and his response was to up my dose. I called today to ask about the side effects He wants me to increase again on Wednesday to 4.5x2. I am so scared. The side effects are absolutely horrific since I got to 3.75. I still dont fall asleep quickly on this dose (takes about 90 minutes average, 90 minutes of awful side effects) and the next day isnt much better. Confusion Impaired cognition Low sensation in hands and feet No appetite, literally cannot eat Dry heaving Dehydration Temperature regulation issues Headache (most likely from malnutition) And I am still having sleep attacks!! Yes they are decreased by I have had at least 5 already today. Cataplexy (still) EXTREME depression and anxiety (can't leave my bed/house) General asshole-ish aggressive and irritable behavior, getting so mad about everything its the only thing I can feel Does this last forever? Is is only when you are switching doses? Is it because he moved me up so quickly? I am so so lost, literally every time I call to ask about side effects? He has added Effexor for my depression but I'm really at a loss. I haven't been able to do anything today or yesterday because of these, will they pass, should I stay the course or did my doctor f*ck up with my doses? I'm very, very new to this. I just got my MSLT back two weeks ago (I have a sleep latency of 2 min and REM in 4/4 if that helps at all) with full body cataplexy about 15 times a day. The cataplexy just started which is what made me look into treatment really. EDIT: Forgot to mention I was and am still takign 40mg of Vyvance daily
  3. I just got my results back. SOREM on my overnight, sleep latency of 2min, SOREM in every single nap...... I had a full body cataplexy attack when they told me. I guess it's good to know though
  4. I took the overnight and MSLT last week and will be receiving my results later this week. I'm very nervous. I feel asleep in all my naps but they made me do 5 so I don't know about R.E.M. Actually, between my 4th and 5th nap I don't think they truly woke me up. I remember falling asleep for my 4th and then later doing the calibration for my 5th and then then discharging me, I never truly woke up. I have severe cataplexy. They detoxes me off all my psychiatric medication and it's been horrible. I lose FULL MUSCLE TONE whenever I laugh more than a chuckle and drop to the ground for a 5-10 specs before I can move again. The same when I cry or am spooked. I've taken the past few weeks off work. I work in the film industry and haven't been able to handle equipment (aka no income....) My main concern is a false negative. 4 days before my sleep study I was on concerta 36mg, Vivanse 70mg, and Lithium 600mg (concerta and vyvance alternating my doc was messing around). I only detoxes for 4 days and although I fell asleep and dreamed for most of my naps I'm still scared. My my question is, can I still get my N+C diagnosis so I can get my meds even if I failed my MSLT? I'm practically housebound because of the C and so depressed. My life has been completely haulted by this. Two of the leading sleep doctors in NYC diagnosed me with C and hypersomnia so far because they both saw it in person. I really need medication. Any response/info is much appreciated -Bella
  5. Thanks so much for your advice! I was taking a pretty high dose of Concerta for (misdiagnosed) ADHD and then again, a high dose of Lithium for nighttime sleep problems. I was originally put on the concerta while falling asleep in high-school due to """"ADHD"""" and have been relatively asymptomatic in terms of EDS since then. However, I have been diagnosed with psychotic depression (hypnogogic hallucinations) despite having no other symptoms of psychosis. I have no ADHD symptoms aside from my tiredness. The cataplexy symptoms I have always thought were normal, I always almost feared laughing because I'd lose control of my torso at least and would often fall down when shocked or scared and almost always fell down when laughing standing up? I only recently learned this is not normal hahaha as its gotten significantly worse over the past few weeks and especially since i went off the concerta.
  6. I've been diagnosed by two leading sleep neurologists in NYC with N+C over the past week as theyve both seen me in person suffer from full body cataplexy attacks and sleep attacks. I have an order in for a rushed MSLT and sleep study which will probably be this week so that they can start me on Xyrem. My symptoms increased dramatically recently which is what promptly me to get diagnosed because I happened to have been being treated with Narcolepsy drugs for what they thought was psychiatric illness and i recently went off these drugs. I have two questions, I am somewhat doubting the narcolepsy diagnosis in part because at night my symptoms get a lot better. I cant tell if this is because I am simply ofter doing more intense stuff at night or what but I typically dont really have as many sleep attacks at night and only end up forcing myself to get off the computer and go to bed around 3 am. I think in part it is due to my own anxiety about sleeping but a lot of it is just natural? Is it normal to symptoms to get better at certain times of days and for PWN to have insomnia? I also have insomnia with waking up constantly but thats a different thing. Its quite odd, during the day I am falling bopping out mid-word and from like 10pm-3am I'm virtually fine just sitting on my computer with an occasional bout of exhaustion but nothing to ring bells about My second question is about the MSLT and my anxiety. I have PTSD which is largely resolved aside from some general anxiety, I am worried that I will fail my MSLT because i just genuinely cannot relax in medical settings (PTSD was in result to an assault in a hospital). Is it possible that this will not interfere w/ my diagnosis? If no, are there other ways to get diagnosed so I can get medication.
  7. Oh WOW ok yes I actually recently stopped smoking, I didn't even think to mention it because I'm not even a heavily smoker maybe a pack a week but I recently quit just for money saving sake. Thank you so much.
  8. Hi thank you so much for your insight. I was diagnosed w inattentive adhd, spaceyness, tiredness, zoning out and not paying attention to the teacher. However once I was medicated my grades sky rocketed, I've always been on deans list and graduated top of my class since being heavily mediated although since these symptoms have started my grades have gone down again
  9. Thank you so much for your help! It mostly happens when I get really stressed or happy, like when I'm laughing or I get bad news, or when I remember something funny or bad.
  10. Ah I should have been more clear. The jerk is just how I sometimes wake or is sometimes coincidental with a motor tic I have that I developed from taking seroquel as a child. What they are describing as cataplexy seems to happen in response to conversations in having, watching TV, stuff like that. I don't normally fall asleep during that? I just like droop forward, I'm awake. It normally also happens less severely when I get sleepy as well.
  11. I have been when I was much younger but not for years..... only those two. My psychiatrist is wary that's it's meds related, she knows me very well. I guess the only other reason I doubt the N is because it's more what looks like cataplexy...like that happens about every half hour. And I fall asleep like 3 times....is that normal.
  12. Thank you! Well I've had the sleeping during the day issues before the medication change for a few weeks but they've definitely gotten worse since the meds change. The stimulants never had an effect on my sleep at night, I went on and off them. I just discharged from from the hospital and they all said they think it's narcolepsy w cataplexy because of the muscular issues and sudden sleeping. Ur I'm so suspicious of the quick onset??
  13. Hi. I'm currently in the hospital being evaluated for my symptoms and I was looking for some insight. Im a 19yr female with perfect physical health aside from insomnia beginning at an early age. I was diagnosed with ADHD very young and have been on stimulants since then. My insomnia dealt mostly with my waking up constantly throughout the night and my daytime drosssiness came and went with my changes in stimulants. The past few weeks two things have happened, the first is my doctor switched me from concerta 30mg to vyvanse 40mg (i lost my pill bottle) and the second being my symptoms have increased rapidly in severity. I'm unsure if these are coincidental. I am having fits of violent exhaustion randomly throughout the day that either cause me to fall asleep or cause my entire torso to just shut down and fall forward until it jerks itself back up suddenly. The falling fits have started to happened occasionally outside of the exhaustion fits, but I am generally more drowsy throughout the day I've had a full medical work up and nothing is out of the ordinary, people are throwing the work narcolepsy around every other sentence but I'm wondering can it really develop THIS QUICKLY to this severity? I came to the hospital because I can barely do anything without losing control of my torso or falling asleep? I'm worried I'm crazy, my doctor here is suggesting a asleep study however I had one at age 17 for tics I was having that was inconclusive