everythingthatshimmers

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  1. I know this has been discussed before on the forums but I stumbled across this video and found it intriguing. http://madcapnarcolepsy.com/diet-for-narcolepsy-my-familys-awakening/ Searching previous posts on the NN forum, it looks like the presenter has also posted here before: Would be curious to hear about your experiences--I'm going to try to add a poll to make it easy to see the overall response. I should mention that I don't have narcolepsy but idiopathic hypersomnia so I'm also not sure how/if any of this would pertain in my case. Am considering giving this a try next year but it's a huge lifestyle change. Thanks.
  2. @CollieMonster We've talked about this before I believe, I was also on steroids earlier this year and felt amazing. Nearly back to normal even at the lowest dose as I was tapering off. I'm surprised no one else has really mentioned this--I had a profound improvement in symptoms and overall quality of life in the ten days I was on prednisone. I seriously bought my first house, started dating someone, and actually had some semblance of a social life again. Not to mention improved productivity at work, mood, etc. Within a couple of days of discontinuing the steroid though, I was down for the count again. Mentioned this to my sleep doctor and my PCP who tell me it was just a side effect of the medication, that it can even cause euphoria in some but I wasn't euphoric--I was awake and present and able to actively participate in my life again for the first time in quite some time. I can't remember if you are N+C or N-C but I don't think our symptoms/diagnosis are all that similar. Interesting that we had such great results with the oral steroid. It's unfortunate that it's not a long-term solution. @Pereise1 Besides my brief (and wonderful!) reprieve a la prednisone, I have had a few days where I have felt close to normal when I have been traveling or doing something I'm really excited about, I think my natural adrenaline kicks in and has a similar (read: better) effect than neurostimulants but it never lasts for long. There's always a bit of a crash. I too have struggled a lot with trying to figure out what a reasonable expectation is--can I expect to feel 80%, 90%, 100% normal sometimes or am I constantly going to feel like I'm working twice as hard to keep my head above water? I think there are people who have had improvement in their symptoms and probably have more times where they feel closer to normal either through medication or lifestyle modifications or both but you probably won't find them posting on the boards. ------ At this point, I'm on Adderall with limited and inconsistent results. I have to take frequent tolerance breaks or else it doesn't work at all and my sleep doctor acts like he's never heard of such a thing. I've recently started oversleeping through several alarms for work and have had nights where I've slept up to 15 hrs and still napped during the day which is very unusual for me. I'm also told this doesn't make sense, hypersomnia doesn't get worse except that mine has been--slowly--for almost 15 years now. My appetite is zilch and I look ill. I don't have an answer when people (family, coworkers, etc) ask if everything's okay. Clearly it's not but it's not easy to explain that I have idiopathic-something-or-other or maybe I'm just depressed or lazy and I'd rather sleep than do anything ever. I am in the process of trying to get a referral to a neurologist with fellowship training in sleep medicine. It's taking longer than it should to get the ball rolling but I'm hoping it will be beneficial.
  3. So sorry to hear you're struggling. I don't have any advice but did want to note that I've had the best luck with Adderall XR as well although I don't consistently get a great response. It also seems to work best for me when taken with a meal which is contrary to what my sleep doc advised; he didn't tell me NOT to take it with food, just that I would likely get a better response on an empty stomach. However, on an empty stomach I either feel like I burn through it quickly or it makes me jittery. Since it's XR, I do have a little bit of time to play with though, I can take it and eat within about 15-20 min. I didn't tolerate the vigils or Ritalin well either. You mentioned cataplexy, have you tried any other meds to treat that? Anti-depressants? Xyrem? Just brainstorming and this may be a long shot but have you considered contacting any university medical centers that have strong programs in sleep medicine and faculty that specialize in narcolepsy? I would assume that they would spend a great deal of time reviewing current research and could access it easily; if you were able to make contact with someone willing to help, they might be able to send some information that would appease your insurance company. Another idea would be to contact a narcolepsy advocacy group or individual who advocates and see if they have any suggestions. Best of luck to you.
  4. I was prescribed prednisone several months ago for an upper respiratory infection and felt better than I have in probably fifteen years, I posted about it some time ago. Told my doctor about it and he said it was just a side effect of the medication, it makes everyone feel good, and prescribed more Adderall. For the record, he also doesn't believe me when I tell him the Adderall stops working when I take it regularly. Prednisone was way more effective for managing my EDS than any stimulant medication I've tried. I also know it's not a long term solution. I should mention that I am diagnosed with "hypersomnia."
  5. Thank you for your replies. It is likely a combination of factors. I do recall reading about a link between dysautonomia and narcolepsy some time ago; I will go back and read more, I don't know that it pertains to me though as my diagnosis at this time is hypersomnia. My primary care doctor has recently left her practice and I am in the process of getting a new doctor but can't seem to get in to see anyone until this fall. I'm hoping they will have some new insights and will refer me to a new neurologist in my area who has fellowship training in sleep disorders. Time will tell. Thanks again.
  6. @DClovesdogs I just wanted to say that I think it's awesome that you're being so supportive of your daughter and seeking out firsthand experiences on this forum. The others have given you some things to consider ahead of the PSG/MSLT but I just wanted to point out how fortunate your daughter is to have attentive parents who are trying to get to the bottom of her symptoms; at the same time, the diagnostic and treatment process for sleep disorders is very different than that of other conditions. Unlike bloodwork or an X-ray, you may not walk out with a clear diagnosis or even if you do, the treatment plan may not be straightforward and predictable. In all likelihood, if she has N or a related disorder, this may be the first of several sleep studies and treatment is often trial and error. I think if you go into it with that mindset, it's easier to be patient with the process and with yourselves. There are lots of previous posts offering advice and suggestions for those getting ready to have the studies, you may want to check those out. I would encourage you to be as calm and relaxed as possible also as your daughter will pick up on any anxiety you may have about the tests and sleeping in an uncomfortable, clinical environment can be a little nerve-wracking anyway. Best of luck to you and keep us posted!
  7. To my knowledge, sleep apnea has to be completely ruled out and/or treated before they will consider a diagnosis of N or IH. Sleep apnea is much more common and it can cause sleep deprivation and symptoms that mimic hypersomnia. Good luck to you.
  8. I have always had a tendency to pass out somewhat easily when sick--flu, strep throat, gastrointestinal virus, any of these can cause me to faint. Over the years I've gotten better at recognizing the onset of symptoms (tunnel vision, mild vertigo) and am usually able to get down before I am completely unconscious although I have been injured. Sometimes during these episodes I have vivid dreaming while I am unconscious although I'm never quite sure how long I've been out; once I was able to estimate about six minutes based on a missed call. I generally feel drained when I come to but also like I've slept heavily, as if I've been sleeping for days. This started in adolescence and my pediatrician never identified a cause. Now that I've given the background, I've noticed that the past couple of weeks when I have periods of increased sleepiness during the day I will also experience lightheadedness, my eyes feel like they won't focus/track, and on some occasions I have had tunnel vision and felt faint. I have also recently increased my Adderall XR to 40-60mg/day; I have not been able to nap during the day due to extenuating circumstances. I'm wondering if this is a side effect of the medicine, related to my sleep disorder (IH), or altogether unrelated. Does this happen to anyone else?
  9. I don't know of an app as you're describing but I've used Sleep Cycle in the past and there is a daytime version called Sleep Cycle Power Nap that logs your time asleep and estimates your time in deep vs light sleep vs awake and is supposed to wake you up at your most refreshed based on the data it collects. I know it's nowhere near as accurate as EEG monitoring but can give some interesting info and saves it daily. I know some folks here have said all these types of monitors are inaccurate but I took my nighttime log to my doctor with the graphs from the app and he felt I had an unusual number of arousals. Hope you find something that works well for you!
  10. Hello and welcome. I am also diagnosed with IH. Was originally diagnosed with N-C in 2014 based on symptoms and MSLT although I only had one SOREM. Since then I've seen two other sleep specialists who disagree and changed to a diagnosis of IH at the end of 2014. Repeat MSLT didn't show any SOREMs though sleep latency is five minutes. I've tried both Nuvigil and Provigil and didn't get any improvement in symptoms. Instead, I had headache, nausea, and an awful, disconnected feeling. I still felt tired but my mind wouldn't turn off at night for me to sleep. It was pretty terrible. Since then, I've been on and off amphetamines. I currently take Adderall XR and have had the best results with it although I am still tired and can often still nap during the day. I can absolutely relate to the need for a concrete diagnosis with clear symptoms and a clear diagnostic criteria as opposed to, you-don't-meet-the-criteria-for-anything-else. One of the sleep doctors I saw tried to reassure me by explaining that N, particularly N-C, is idiopathic also. No one knows what causes any of it. I have posted many, many times here about my frustrations with the diagnostic process and limited treatment options. It took me over ten years to get diagnosed and then it felt like it was retracted, like they were saying wellll maybe you're not quite as sleepy as we thought. I know that's my perception but it's hard to know how to explain IH. You're right about our tiredness being different. It's hard to explain the mind-numbing tired when everyone complains that they're tired all the time. As an example, I recently decided to try acupuncture (I know, I know) and had a bad experience. The assistant took my medical history and commented that it must be nice to take naps, she added that she couldn't remember the last time she had been able to take a nap. But it's not nice--I tried to explain. Then the acupuncturist came in, who was a doctor, and commented on me being there for an unusual complaint (low energy/tiredness, ha) and proceeded to ask how often I exercised. He was a huge, muscle-y guy who obviously puts in the hours at the gym. I explained that I haven't been able to exercise regularly in several years, I am extremely tired due to a sleep disorder, many days I have a hard time getting through the work day and am on medication to help me stay awake during the day. He then scoffed and commented that he was tired at the end of the day too. He then went on a tirade about the overuse of drugs for ADD/ADHD (I don't have either, the Adderall is for wakefulness) and chastised me for taking the Topamax prescribed by my neurologist for migraines because it causes memory loss (the migraines are likely related to poor sleep, in my opinion). If other "healthcare professionals" (I use the term lightly in this case but Ive had other similar situations occur) can't seem to understand EDS, it's really discouraging and makes me even less likely to disclose to friends, family, etc. Good luck to you and keep us posted!
  11. When I travel I often don't experience the same degree of sleepiness, at least for the first couple of days. It does catch up with me though.
  12. Ran across this blog post from the NY Times this morning and thought I would share: http://mobile.nytimes.com/blogs/well/2013/03/21/from-a-sleep-study-clues-to-happiness/?referer= Thought it was new but turns out it's about three years old. Probably not any new info, maybe some incorrect info pertaining to hypocretin but nice to see something mainstream discuss N.
  13. @CollieMonster Thank you for sharing! Isn't that incredible?! I mentioned it to my sleep doc but he told me it was simply a side effect of the prednisone and "it does that to everyone." I don't think so, though. In the two weeks I was on it, I started dating someone (I haven't dated in years!), picked up some extra hours at work, and even bought a new house. I'm not kidding--I felt good enough to invest in real estate! I even took a couple of pictures of myself in the late afternoon, at the end of the week, etc when I usually have a really hard time getting by and I looked like a different person. I looked younger and happier. I too thought maybe I was imagining it but the longer the effects lasted I couldn't deny it. I didn't take Adderall or any naps for two whole weeks. Seriously, it's been at least six years since I can say that. I did a web search and saw one article about PWN reporting symptom relief with steroids but nothing really concrete. I thought it might also be a sign that there is an underlying autoimmune or inflammatory disorder or something causing my sleepiness but when I mentioned it to my doc I was shot down pretty quickly. A possible cause for my sleepiness? Crazy talk. I'm considering asking if I can do a round of steroids every now and then for a pick me up. It didn't take much either for me to notice a significant improvement in energy and well-being; in fact, I took a slightly lower dose than originally prescribed because I had trouble falling asleep on it. For those results, I'm only halfway joking when I say I'd buy Prednisone off the street. :-)
  14. Yes, Prednisone was amazing. No joke, I'd trade my Adderall for it any day except it's awful for you long-term. So is there a difference between central hypersomnolence and idiopathic hypersomnolence or no? I know it's all central and it's all idiopathic and the name doesn't matter *unless* I have the audacity to call myself type 2 narcoleptic in which case I'm immediately put in my place although that is what I was originally diagnosed with and it might really be the same thing anyway. See my confusion? When I refer to my sleep is "bad" I guess I'm meaning when it feels bad. When I crave naps even though I know I may not feel better afterwards. Subjectively, I know there are nights when my sleep quality is poor because I remember waking up several times or I wake up in a different place than where I went to bed because I sleepwalked. Objectively, my PSGs show ~50-150 arousals per night and and that cannot be good quality sleep even if it isn't truly representative of my sleep patterns.
  15. I'm sorry, which is which? The first one sounds more like me. Just plain 'ole sleepy for no good reason. I crave sleep incessantly even when it's not always good sleep. I meant to mention earlier that I had a semi-life-changing event a couple of months ago. I was on an oral steroid for a respiratory infection I just couldn't shake and felt better than I had in at least ten years, seriously. It was way better than any neurostimulant! It was amazing! If nothing else, it gave me hope that I have the ability to feel like a normal human being again.