luv2bawake

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About luv2bawake

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  • Birthday 10/11/1970

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    http://www.nicolejeray.com
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  • Gender
    Female
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    sports, dogs, narcolepsy, travel
  1. Love Dogs. I got one at the lowest point in my life and that dog literlly got me out of bed. I think a dog is a great idea. Definitely less stress when Im around a dog, especially my dog. Sometimes its so hard to get moving...but when you have this dog licking your face cuz he wants something...you must respond. Dogs are calming and supportive. Love us no matter what. They dont care about N.
  2. I was on Clomipramine for cataplexy. It did a good job with my cataplexy, sleep paralysis, and halluncinations. However, it made me extremely sleepy. I was on it for a few years (so happy my cataplexy was nearly gone). When I realized that there were alternatives to Clomipramine that might not make me more sleepy, I tried others. It was easy to titrate off and start a new anti-depressant. The only anti-depressant that is difficult to go off is Effexor. Im on Effexor xr now and it works great for my cataplexy, sleep paralysis, and halluncinations. Also almost has a stimulating effect. Ive had to do off effexor in the past and it caused rebound cataplexy (BAD cataplexy). Ive never experienced that with clomipramine. I also gained a ton of weight with clomipramine. Good Luck.
  3. I am not sure about how the medicine works because Im not on Dexedrine. However, Im curious what you are eating for breakfast? I know that certain foods put my right to sleep. Sweets, pancakes, cereal, breads, waffles, etc. Also, when I drink a lot of water, it helps my sleepiness. I especially chug water in the morning to get my day started on an awake note. Maybe taking meds on empty stomach then eat 30 min later?? Good luck.
  4. Call the Narcolepsy Network. They have a list of doctors that they can recommend. I believe their list comes from members of NN. You need to feel better. Especially the cataplexy. Ive been a member of NN since 1999. It changed my life, when I went to my first National Conference. I learned so much from other people with Narc (PWN). It seems to me that effexor works very well for severe cataplexy (with our making you sleepier) It may even have a stimulating effect. I am on effexorXR and many other people are too. Provigil and Nuvigil work well for EDS. The absolute best for a text book Narcoleptic is Xyrem. Everyone is different, but these medicines seem to be the popular ones amongst PWN. Once you find a doctor, if you cant afford medicine - there are programs that are very good to help and help a lot!!!!! Good Luck
  5. I take effexor also. Im on 150mgXR. It helps tremdendously. Ive heard good things about the immediate release (i think you have that one if you take it 2x's a day). When I was only on effexor and provigil, I still had to nap 1-3 times a day, mild cataplexy several times a day, full cataplexy a few times a week (sometimes more). With Xyrem and effexorXR, I am a new person. I can also do activites that I avoided before. FEEL GREAT. There are times when I am only able to take one dose of xyrem. I feel fine. Cataplexy is even okay.
  6. Maybe you should ask your sleep doctor about the rebreathing of the air with your CPAP. It is a really good question and totally makes sense. You could also call the "Xyrem Success Program" Im sure they have dealt with people on the CPAP and can give you a quality answer. You do know that if you have untreated Sleep Apnea, it will lead to high blood pressure, diabetes, and heart problems. My Mom is a mess at 71 from untreated Sleep Apnea. Also, I understand people metabolize medicines at different rates. Did you ask the doctors that?
  7. How long have you been on Xyrem? Did they start at a low dose? Were you itching on the low dose? This is definitely something your doc should know. Call him, emergency. Maybe that is why your lungs started to shut down. Also, call the "Xyrem Success Program" about the benadryl (do you have the number?) They can tell you if can combine those medicines.
  8. Wow...sounds to me like your dose is too high. You didnt have any other seditives?? like alcohol or sleep pill?? Ive been on xyrem for almost 3 years and it is wonderful. Yes, Ive woken and felt extremely drunk. That is normal. The breathing thing is not. 5 years ago, I was prescribed too much and the same thing happened to me. Hard to breath, heart racing, I paniced. Luckily, I tried xyrem again a few years later with proper instructions for an experienced sleep doctor. It has been wonderful. No side effects. Good luck and dont give up. I cant imagine going back to that sleepy world, hallucinations, full cataplexy. Talk to your doc and/or an extremely expericenced doctor.
  9. Very hard to meditate!!!!!!!!!!!!!! I find that Yoga is pretty good because of the movement along with breathing and trying to get the right postions helps me stay awake. Its sort of like meditation because I find myself totally absorbed in the class. At the end, we usually meditate for 3-5 minutes. I fall asleep sometimes.
  10. I took naps for years. They helped tremendously. Id nap before important activities...so my mind would be sharper. PWN can pretty much sleep on command, so I would nap any time there was a good opportunity. 10 min would make a world of difference. Sometimes I would schedule them in. Say an hour break for lunch. Id eat fast and then set my alarm for a 30 minute nap. I wouldnt go any longer than that. Especially if you have to wake and start thinking again. Yes, a lot of time Id wake with the sleep inertia and its hard to get moving...but in 5-10 minutes I would feel so good. The last few years Ive been on Xyrem. This has helped my night time sleep so much that I feel great during the day. I still nap sometimes...but they are few and far between. I feel so much better!!!! Good Luck to you. Naps did help alot and still do. ALso make sure you are hydrated...lots of water. Eat small healthy meals...sugar and carbs are a sure way to make a person sleepy Good Luck.
  11. I wouldnt take the xyrem if on call. How long do you have to do this on call stuff? That really stinks. Ive been awaken many times after taken xyrem. I feel extremely drunk. Id say 2.5 hours after you take it is when youd be okay to function (but everyone is different). Do you take anything else for your cataplexy? Maybe you could suppliment xyrem with an antidepressant temporarily to help with the cataplexy until you are able to get your schedule changed. HMMM?? Staying hydrated and eating well also helps my cataplexy. Good luck. Hope you can get your schedule changed soon or eventually.
  12. I AGREE!!!!!!!!
  13. When I eat too close to bed time, my first dose does not work so well. I also find that both doses work real good if I dont nap during the day (these days are few and far between). I also have to treat my cataplexy with an anti-depressant. I have severe Cataplexy and the xyrem alone is not quite enough. With the addition of Effexor, may cataplexy is 97% gone. So incredibly wonderful!!!!!!!!!!!!!
  14. I travel to Houston, Tx to see my sleep Doc. He changed my life. Dr. Todd Swick....he has tons of patients with Narcolepsy. Good Luck.
  15. Im confused as to what your question is? You have N/C and want to see a Phych doc instead of taking medicine?