InquiringMind411

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About InquiringMind411

  • Rank
    Member
  • Birthday 12/29/1976

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  • MSN
    adriennebsinger@hotmail.com
  • Yahoo
    andisinger411@yahoo.com

Profile Information

  • Gender
    Female
  • Location
    Boise, Idaho
  • Interests
    movies, spending time with my 13 yr old daughter, researching narcolepsy (recently diagnosed in 10/2011), becoming more social, solving puzzles like Sudoku, walking, continuing to lose weight
  1. Ambien for an MSLT? Really? Every piece of literature I've read about the study indicates that something like Ambien would not be allowed during this study as it's testing you're natural EDS and sleep latency and REM during the day. Ambien would make it so anyone could test positive for N, wouldn't it? Besides, I've taken Ambien and Lunesta years ago and watch out Sista.... I was driving and making gourmet meals and all kinds of weird things in my sleep. I will never touch those sleep aids again. Who knows what I would do....YIKES! :-)
  2. The only reason I know for being let go early is that you didn't fall asleep during a nap. You must fall asleep during each nap to move on to the next nap and if you don't then they end the test and send you home.
  3. Well Jen, I must have cursed myself somehow because I got notified today that my last 2 MSLTs had to be disqualified because I was taking my prescription pain meds during the tests. A "miscommunication" they called it. Well, who the heck forgot to tell me that I had to be off my pain meds for at least 3 days before the tests..... both times! Holy cow! So sister Cymbalta, I too must withdraw cold turkey from Cymbalta starting today for the next 2 weeks and for my birthday present on December 29th, I get to take a 3rd MSLT. The pain meds aren't an issue at all and I think it's funny that they think they might induce sleepiness considering the opiates actually seem to be the only medication that give me the energy to make it thru the day. Without them I'm sleeping 20 hours a day easy. But, here we go! Let's keep in touch and keep each other sane!
  4. Hello Emo!! So glad to hear from you! Your response was a joy to read. I wasn't sure if I'd hear from anyone at all. I'd love to chat more about your experience with N and find out what hoops you had to jump thru to stay awake. If you don't mind my asking, what doc do you see and are you happy with him/her? How many years have you had the N diagnosis? I must run for now but will hit you up later when I have more time to chat. Thank you so much for your quick response. I'm not alone out there! :-) Andi
  5. Hi All. My name in Andi and I live in Boise, Idaho. I'm interested in starting a support group in Boise, Idaho and would like to find out how many folks there are out there with Narcolepsy living the Boise Metro Area. Please respond to this posting and let me know you are out there. Feel free to include any information about yourself. I was recently diagnosed in 10/2011. I was informed by the nurse at my sleep specialist's office that there are only 10 N patients there and currently no support group of any kind in the area. I thought it might be nice to be able to get to know each other and have someone to share our experiences with on a more intimate level. I don't know what experiences you have had with your doctors but let me give you an example of why I'd like to have more input from people with the same diagnosis. I've been on Nugivil 250mg for about 5 weeks and have tried Provigil in the past with no effect. The Nuvigil helped for a few days and its helpful occasionally but about 3 days out of the week I still fall asleep on it about a hour after I take it uncontrollably and sleep the whole day. It does nothing for me. On the days I am awake, I feel a little foggy. I told my doc this (actually his NP) and she said that she's never heard that from any of her patients. She refused to make any adjustments. Now, I'm thinking "You only have 10 N patients so how can you possibly base any kind of good assessment of a medication's typical side effects or effectiveness on the reports of only 10 patients." Honestly, what kind of life am I supposed to have when the medication does nothing for me 3 days out of the week and puts me in a fog the rest of the time. So, I'm sure those of you out there have similar stories and if we had the backing of each other and could bounce ideas of each other, we could be of great support to each other and help each other get better and more effective treatment from the limited medical community we have here as we are fairly isolated when it comes to this condition. Thanks all. I look forward to seeing how many of us there are here in Boise.
  6. Hi All. My name in Andi and I live in Boise, Idaho. I'm interested in starting a support group in Boise, Idaho and would like to find out how many folks there are out there with Narcolepsy living the Boise Metro Area. Please respond to this posting and let me know you are out there. Feel free to include any information about yourself. I was recently diagnosed in 10/2011. I was informed by the nurse at my sleep specialist's office that there are only 10 N patients there and currently no support group of any kind in the area. I thought it might be nice to be able to get to know each other and have someone to share our experiences with on a more intimate level. I don't know what experiences you have had with your doctors but let me give you an example of why I'd like to have more input from people with the same diagnosis. I've been on Nugivil 250mg for about 5 weeks and have tried Provigil in the past with no effect. The Nuvigil helped for a few days and its helpful occasionally but about 3 days out of the week I still fall asleep on it about a hour after I take it uncontrollably and sleep the whole day. It does nothing for me. On the days I am awake, I feel a little foggy. I told my doc this (actually his NP) and she said that she's never heard that from any of her patients. She refused to make any adjustments. Now, I'm thinking "You only have 10 N patients so how can you possibly base any kind of good assessment of a medication's typical side effects or effectiveness on the reports of only 10 patients." Honestly, what kind of life am I supposed to have when the medication does nothing for me 3 days out of the week and puts me in a fog the rest of the time. So, I'm sure those of you out there have similar stories and if we had the backing of each other and could bounce ideas of each other, we could be of great support to each other and help each other get better and more effective treatment from the limited medical community we have here as we are fairly isolated when it comes to this condition. Thanks all. I look forward to seeing how many of us there are here in Boise.
  7. Hi Jeni. I was in the EXACT same position as you for my MSLT. I have been on Cymbalta for what seems like forever and if I don't take it I get so anxious I feel like electricity is shooting thru my body with every movement I make. It's the most horrible feeling and makes me not want to even blink and after my first sleep study came back bad and was told I needed to be off the Cymbalta to get a clean read I knew I had to make the sacrifice but was NOT looking forward to it at all. I warned everyone around me....friends, family, and my kids who lived with me exactly what was going to happen so they knew I was not going to be in my right mind over the next 30 days and basically apologized to everyone ahead of time but explained why and prepared them. First, I strongly suggest you clear your calendar of any unnecessary activities, obligations, etc. Make the next month as stress-free as possible. Even events like grocery shopping where you have to wait in line or any banking or paying bills.... anything that could possibly trigger anxiety. Get rid of it if you can or have a friend or family member take it over and ask them to keep discussing it away from you until you can get back on the Cymbalta. I don't know if you have kids or are married but even little things like being bugged to take them to the park or hubby leaving you with the kids on the weekend to golf have to be cleared off your plate for the month. Second, if you have a counselor, case worker, or PSR worker, ask to increase your visits with them. Having that support is going to be crucial to keep your anxiety in check. If you don't have a regular counselor, try to get a referral for a temp or use a community hotline. Maybe you live in an area that has some really good support groups. Anything like that would be really great. Don't use friends to just "vent". Use a professional setting that specialized in anxiety. Third, don't substitute with another medication. That's just going to risk throwing off this 3rd sleep study and since it's your last chance to get a good, clean read, you don't want to jeopardize it. I know it would be great if there was a "miracle pill" out there but there isn't. Something I did whenever I found myself starting to get anxious was to just walk out my door and start walking. The trick I did was to not allow myself to think about whatever was bugging me but to force myself to look around me and people watch or check out the cars as they drove past or look in the business windows. Basically get myself distracted. Now, I'm usually a total pessimist and I hate it when people tell me that exercise is a great way to get rid of my anxiety especially when I feel like electricity is shooting thru me and I have a really hard time not letting myself totally obsess over my problems and over think things and if I'm walking I'd think that it would just be me totally focused on my problems and feeling like crap but it was actually amazing when I let my eyes do the thinking as I looked at the world around. I was kind of snoopy like I'd see people sitting in their cars or in the business windows doing things and I'd be focused on what they were doing and circling the parking lot and kept myself moving and in my head I was wondering what they were talking about but soon I was so fixed on everything else that I wouldn't think at all about my anxiety or the electricity. I was walking up to an hour at a time and not even realizing and sometimes multiple times a day. During that 30 day period, I actually lost 16 pounds. Pretty cool!! I'm still walking now. Last suggestion I can give you, it really doesn't matter whether you stay up the night before or sleep the night before. I slept for 20 hours straight the night before and woke up at 4am for about 20 mins, then went back to sleep until 6am when my alarm went off to get up and go to the sleep lab. I still was tired enough to sleep for the 5 naps. The key to not getting anxious is to do some relaxation techniques about 30 mins before each nap so your anxiety doesn't interfere with your nap. I use box breathing. There are many names for it and you may already know this technique. I love it because it really gives you no choice other than to focus on your breathing and counting. You can lay on the bed or sit comfortably in a chair. Eyes can be open or closed. Breath in your nose and out your mouth for this. At a comfortable pace but I suggest keeping it slower than your typical breathing pace. Breath in and silently count to four while picturing the numbers forming a box as you count them... I picture it like a kids playground four-square outline and actually move my eyes on the wall in that formation so there's no room for my brain to think about anything else. Then hold your breath for four counts doing the same thing. Breath out for four counts. Hold your breath for four counts. Breath in for 4. Hold for 4. Breath out for 4. Hold for 4. and keep repeating. Use this whenever you feel anxious over the next 30 days. I hope you find this helpful. I made it through and the minute I found out my study came out clean, I had my own "pill popping party" and took my Cymbalta with such a big smile on my face! My PSR worker said she's never had a client who has been so happy to take her medications. So Jeni, it looks like we are two of a kind when it comes to understanding how beneficial meds can be and why it's important to take them. My PSR will be happy to hear I'm not the only one out there who loves life anxiety-free!!! Good luck my dear! Keep up with your posts. I'd love to follow how things are going for you and how it all works out for you.
  8. You're not along with this confusion. I too have these mild cataplexy attacks that seem so mild I question them so I'd love to hear other's responses. I was diagnosed just a few months ago and have had only 3 doc appts. My sleep doc only has 10 N patients so I have a hard time considering him an "expert" when he's comparing me to his other patients and their reports of responses to medication, etc. I live in a relatively small community with no support group to attend. I'm not a person to have big outbursts of laughter so I can't say "yes" to the typical "Do you drop things when you laugh?" question but I have had moments legs giving out underneath me when I get very stressful news or once when I saw a small child in immediate danger and wanted to run after him to save him and instead of being able to get out of my chair to run after him, I felt total leg and hip collapse as I was rising out of my seat and pretty much watched everyone else run past me to save the child. The most helpless feeling as a mother. I do understand the dropping of the keys, pens, sodas, etc. It feels a little different than normal "oops, I just dropped something" but I can't ever seem to describe how it's different. I just know it's different. Getting my doc to understand it was different took a little convincing but he was accepting of it. His words were "I've never heard it described like that but I'm convinced its cataplexy if you really feel that's what it is especially if you say you've done some research and feel that is what you're experiencing." May I suggest you go to YouTube and search for cataplexy. There are some videos there of a variety of people of all ages experiencing a wide variety of attacks ranging from laughter to stress to even a little 4 year old girl just swinging having numerous attacks. There are also a series of people just talking about their narcolepsy that really helped me to realize I'm not alone in my confusion. I'm not the only one out their who has gone 10 years struggling with such tiredness without anyone being able to put a diagnosis to it until now. I'm not the only one who isn't picture perfect textbook with my symptoms and my reaction to the meds I've been given so far..... and so on. I think it'll help you to find info about any other questions you might have and maybe help you to know what questions you might what to be asking as well. I hope this helps even if it didn't answer your specific question. :-)