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  1. Welcome Good Luck
  2. Nikorah Just wondering if you have been in contact with anyone from ILADS? Please check out this link Best of luck
  3. A.Moore86 I am curious about your encounters, although I have never experienced this personally I do have a few patients who have mentioned similar experiences. I do think it is a rare occurrence.My opinion only.
  4. A.Moore86 Lots of unexplained arousals (27.49/hr) Fragmented sleep? quite possible. Common in Narcoleptics. You should reconsider the type of sleep you desire, you can sleep 24 hrs, however, unless it is consolidated and of good Quality you will not feel at all like you have rested. 5-6 hours of quality sleep is better than 12 hours of poor, fragmented sleep. I believe the History of excessive daytime sleepiness, Sleep Paralysis and Hypnogogic hallucinations is significant when considering whether or not to repeat the testing.
  5. A.Moore86 If I may add to what HBr has advised above. Did you have a rapid sleep onset REM period on your overnight study?, were you on any medications when the study was done? It would be interesting to see the results of the PSG if you have them. I have had very few, if any patients with sleep paralysis and HH who do not have narcolepsy. Repeating your testing is certainly not a waste of time, When doing these studies we get to see only one night and one day of your life and we have to hope we can catch the disorder in that time, does'nt always happen we need to repeat testing if there is any doubt whatsoever. I also read a post by you asking about encounters with an incubus or succubus I would like to know more of this encounter, and yes I have heard of this before. Best of luck
  6. Nightmore If I may ask what were the results of your overnight sleep study, if you have it and could post it there may be a clue as to why you are not sleeping. As for xyrem, this medication does not work for everyone at 9gms per night and after 2-3 weeks there should be noticeable improvement. What are you doing for the daytime sleepiness? are you currently medicating with stimulants in conjunction with the xyrem at night? How about exercise and diet (go easy on carbs and sugar, check out a ketogenic diet). You may want to have your sleep rechecked in a couple months. I am not a big fan of pharmaceuticals, My preferences remain Xyrem and Neurontin, however, I have found that a Reishi mushroom tea with some added passionflower vine and valerian root added at night typically provides the same or better results than xyrem, I also add Ashwaganda during the day to bolster immune system function. But thats just me. Everyone will eventually develop their ideal regimen, it does take time and patience and maintaining a positive outlook which I know is extremely difficult when nothing seems to be working. I would also recommend counseling or joining a support group in your area. I wish you the very best
  7. SpaceCadet My recipe When I use herbal supplements I use liquids, I order mine from GAIA herbs, The dosage for valerian root is 1/2ml added to a drink or tea 1 hour prior to bedtime, in 1 week increase to 1ml. (1ml =333mg valerian) For passionflower vine the dosage is the same 1ml (passionflower vine is 500mg/ml). For tea I use Reishi mushroom tea add the valerian and passionflower to the tea and relax. Some find the Reishi tea alone works tremendously well. simmer the herb with 400ml water for 20 minutes, when cool add honey and liquid herbs,Reishi mushroom has a bitter taste. In traditional chinese medicine it is a popular anti aging drink, however it is excellent for insomnia and promoting delta sleep.Modern research shows it also has a calming effect along with pain relief. Ashwaganda liquid extract (300mg/ml) add 20-30 drops to your morning glass of water. Make sure the ashwaganda comes from india or Sri Lanka
  8. SpaceCadet My favorite nighttime cocktail is a mixture of Reishi tea with the addition of Passionflower vine and Valerian root, for most folks works very well to promote sleep and especially to consolidate sleep, that is if you are into non prescription medication. There is a recipe for this on another thread I will go get it and post it for you. If you prefer a prescription medication with little side effects and adverse events my favorite is Neurontin 300mg at dinner and again one hour prior to bedtime. I know there are others who disagree with this,it is simply what has worked for me in helping a great many patients to sleep better. Incidentally, this is not a lifetime recipe, only a kick start to get you back on track. I am not a fan of using medications to sleep. Not every medication will work the same for everyone but you won't know unless you try.
  9. Wow!! Tons of information Ferret thanks
  10. MB4551 If I understand correctly you did an in home sleep test and you had a very short sleep onset latency and only a 65% sleep efficiency is that correct? I would very much like to know where those numbers came from since there is not a home sleep testing device to my knowledge that can measure either sleep onset latency or sleep efficiency. In order to arrive at either of these numbers or percentages there must be a way to monitor your brain wave patterns throughout the night, this generally involves placement of about 24 electrodes at various measurable places on your scalp and connected to a recording device. Generally speaking the only sleep disorders that can be detected through home sleep testing are the sleep disordered breathing patterns. Narcolepsy cannot be diagnosed from a sleep study alone, it can certainly arouse suspicions but must be followed directly by the MSLT. It sounds to me like you may have a combination of sleep disorders, my suggestion would be to forget about whatever the home sleep test says, you will need an in lab PSG and MSLT. Check with your Physician prior to getting any studies done, make sure they are comfortable with diagnosing and treatment of Narcolepsy (generally pulmonologists are not interested in disorders other than those related to breathing). Visit the lab where your study will be conducted, check out the rooms, try out the bed, make sure you are comfortable with the technicians who will be performing your study. Ask how many people with Narcolepsy have been treated at the clinic. Make sure they advise you to stop all stimulants, muscle relaxants, narcotics and antidepressants two weeks prior to your study. When you come for the study, bring your own pillows and blankets if you want, hell pack a teddy bear, bring snacks and something to occupy you between naps during your MSLT. These studies should approximate as close as possible your home environment. Remember that any treatment or non treatment will be based on what these studies show so they need to be top quality studies. This is your health don't settle for anything less than the very best. If you don't find it at this clinic feel free to say you are not comfortable and move on to the next. My personal feeling is that I would want a Neurologist trained in sleep medicine and very familiar with treating narcolepsy. Best of luck
  11. SpaceCadet Please forgive me if this sounds blunt but in my opinion these problems you describe relate directly to good sleep hygiene. There is not a pill, clock, alarm or device that will wake you if your sleep quality is poor. If you are narcoleptic sleep hygiene is the single most important factor in managing your disorder. Nearly all narcoleptics suffer from severely fragmented sleep. to begin with, so if you are only getting a few hours of sleep every night then you are contributing to the severity of the disorder. There are medications to assist with obtaining better sleep and a better quality, however, you are in control of the most important factors. I would think that feeling better would be a pretty strong motivator. Also the combination of adequate sunshine, healthy lifestyles and exercise combined with good sleep hygiene will work better than anything I have heard so far, this is 50% of the battle, but only you are in control of this. Best of luck
  12. ClaudiaG You're ready give em hell
  13. ClaudiaG It is just my opinion but never rely on medication alone. Sleep hygiene, diet adequate sunlight and exercise are going to be a huge part of your progress, medications can do only so much and take you only so far. Best Wishes
  14. ClaudiaG From my understanding these clinical trials are in the very early stages, it sounds to me as though you are desiring to begin treatment as soon as possible. Though I am eagerly anticipating the results of this trial, I would take it with a grain of salt, I am sure even if it works there is going to be a hefty price tag associated with its use, and I will bet money that the insurance companies are going to require trial and failure of all the other medications first just like they do with xyrem now. All that being said I am a fan of xyrem I have seen it work for far too many patients with Narcolepsy not to. I would do my research on the stimulants, vigils, and xyrem prior to your next visit or phone conversation with your physicians Please visit these sites and arm yourself with all the information you can. Best of luck
  15. ClaudiaG My advice is to call your Psychiatrist or make an appointment. You will need to discuss not only whether she has been contacted by tour NP but also to discuss your options for treatment. Hopefully she is versed enough in sleep medicine to advise you on medication issues. I still prefer a Neurologist trained in sleep medicine to work in conjunction with your Psychiatrist but thats just me. What clinical trial? Good luck