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About ladyjae

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  • Birthday March 24

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    My family, Natural Health, Nutrition, Herbs, Homeschooling,

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  1. I tried metadate for a month, it was ok, not awesome but worked ok. I accomplished more than before it. Not going back to Xyrem like I HAD THOUGHT. It is to hard for my children and I just can not do it right now. So I am trying the Daytrona Patch, long acting in hopes of it helping. We decided to try it due to flexibility and being able to have it last later into the night. I used it 2 days, and I am not impressed at all! I am on 30 mg patch. I can sleep, fight to stay awake if I sit long, and it does not seem effective as Metadate was. So I am wondering if anyone has used it? Experiences good and bad? Does it improve with use? Or stay the same? If it wont improve I am not looking forward to a month of this until I see doc again. I know he will change it if I am not liking it, but my app is a month away! I am tired of being tired, tired of cataplexy, fuzziness, forgetting, and not keeping up. Tired of letting my kids down due to being unable to keep up and take them places. Single parenting is hard under any circumstances but this is horrid. I dont wanna do it alone anymore. My husband and I are working things out but we are a while from him being home, and him helping much. I know eventually he will help a lot, but right now the situation does not make it possible while we are working things out and working toward him coming home Ok this is turning into more complaining than anything, so i am gonna end this now!
  2. I am just seeing this and it makes a lot of sense to me. I am Certified in Nutritional Healing, and find that many people have allergies, or reactions to foods that they did not know effected them. I am amazed constantly at what I find making people ill. Use of the elimination diet is a great tool to find out whats doing what to a person. I know I react strongly to dairy products, and can not have them- cow dairy that is. I can have goat and sheep. I have a son the same way his reactions to milk are different than mine. I have increase in pain, sleepier, and other issues. he is sick, violent, aggressive, does not retain what he learns, severe constipation and more. So we are 2 people reacting to the same food differently. If 2 people in 1 family can react so different then it makes sense to me that through the general population people react to a variety of foods different. I would love to know more about other foods thought to effect Narcolepsy and/or cataplexy in good or bad ways. I may do some research of my own on this. I am not having good luck in treatment, use a combination of medication and natural approach to manage my days. But would love to feel better or avoid medications if possible. Tired of side effects. I was on Xyrem for a while and loved it but found my pain from other issues unbearable, tried several suggestions but it did not help. Was considering another try recently but its not happened and I am unsure it will. OK NOW I AM RAMBLING! lol Lady Jae narco~mom
  3. I am just seeing this, and the other topic but wanted to reply. As a Nutritional Healer i would say you may be onto something. It may be the high alkolides or that you are having a reaction, may be allergy or not. Sometimes our bodies just do not tolerate foods. I would cut them out totally, go a few weeks without and chart daily what happens, then slowly introduce them, 1 at a time with a 2-3 day period between each new food, chart again as you go. If you see an increase at any point remove the food for good from your diet. Go through them all until you know what effects you. Good luck I hope you do manage to find some help with the cataplexy. I know foods effect everyone different. I have a sis in law with tourettes, she cant eat any tomato or it sets off her tourettes. LadyJae Narco Mom!
  4. The pain became unbearable and I was taken off xyrem. I am back to not functioning, sleepy, brain dead and hate it. I am taking Nuvigil but it does nothing really. Not enough for sure. Thanks for the suggestions, I will check into it, see what can be done. Its been hard to go back to what I was before Xyrem. I do have issues with magnesium normally I am always low, I was already supplementing it with high doses and it did help in the beginning but not towards the end.
  5. You may be having the reaction to magnesium that you are because your taking so much. The 1st best way to know your taking more than needed is diarrhea. When taking large doses of magnesium thats what you need to watch for and be aware of as to much, you may want to consider a lower dose.
  6. Hello just saw this, havent been here in a while. I am Narcoleptic with C, and also finishing degree as Naturopathic Doc, I do herbs, reflexology, and more. I use a combo of natural and meds at this time. I take a product thats awesome, just ran out, dont have my empty container so as soon as I can remember the name I will tell you. (Bad day today) If you want to talk away from here we can. A few things I would suggest Ginseng can help a lot, just dont over do it Bee pollen, royal jelly, are great, Diet is essential to being healthy. I do a lot of Nutrition consulting for others. And I am amazed each time I see improvement, even in myself. ladyjae
  7. I was diagnosed with bipolar for years before my dx with Narcolepsy. I was mis diagnosed and my current team of docs changed my dx after beginning thyroid treatment and my current psychiatrist says "with all those health issues, narcolepsy itself is enough to depress you, your not bi polar your chronically ill, and other doctors need to recognize that" Yup I have depression at times, but Narcolepsy is not my only issue health wise, and my docs know. if you do not feel ok with the dx tell your doc, look for another you should not settle, and if your doc does not understand Narcolepsy you need another any way. Good luck
  8. no longer on Xyrem due to horrid pain reaction, on Nuvigil and wishing I had a life

  9. I self medicated for years and did not know it. i remember telling others it was the only time I felt "normal" and could function was when using speed. That did little to help them understand and more to make them think I was an addict. i stopped cold turkey for a personal reason. And slept for most of the time over 15 years, until dx. Now I am still trying to figure it out, but I do know i did function on what I used better than with out. My sleep specialist asked me how much self medicating I had done. Thats when I truly realized I had been, everyone convinced me otherwise. He said that to me, and I was pretty mix of emotions on that one!
  10. Xyrem has helped my mind, memory, words, thoughts, anything to do with memory drastically. I have good and bad days but bad is better than good pre xyrem. My doc told me most of his patients on xyrem have similar improvements and that its the best he has seen so far. I cant even read a story to my children anymore, well with xyrem I have managed to! It had been a few years since I had been able to, frustrating.
  11. Didnt know they have portable eeg machine. I will ask about it. My normal cycle has gone off the last month, I am all sorta messed up with it. I have another app next week will see what I can find out about portable machine, and other possibilities
  12. Thanks for ideas. The hallucination idea has come up before. I have been checked for seizures, had MRI, CAT scan and a few other tests, all show normal. i do have a history of migrains, I never thought about it but it will be something to ask doc about.
  13. does not sound quit right, close but not right. I am so tired of it. Sometimes i wonder if I somehow keep causing more illness, making myself get more and more. I know I am not yet still wonder .... How is it one person can have so many things wrong? Why? tired today
  14. Hello all so as I attempt to adjust to life with N with C and all my other tag along issues Fibro, Myofacial pain syndrome, sciatica, bursitis, and who knows what the doc will throw in next. I have managed to figure out what causes what for the most part, not all but most. I do have a few making me nuts trying to decide so I can figure out what direction to go. so I thought I would come here, see if anyone can help. My biggest issue at the moment is I have a cycle monthly, not the female kind. The first week of every month I go through the same thing. It lasts about 1 week. Its not hormone, had all that checked, had a hysterectomy a year ago and only have 1 ovary left now. for aprox 1 week I am stuck in my house due to the issues I get a strange dejavue type feeling, then a sense of smelling something almost, followed by either extreme nausea and or vomiting and passing out. This happens repeatedly through the day for almost a week. I cant go anywhere it happens so often, I dont always pass out completely, sometimes its the beginning black out feeling, then lets up. I have been tested for seizures, cat scans, mri's, you name it, no one can figure it out. With my N being treated I am not 100% better but enough that its been nice, My pain is still high but I manage, then I hit my week of ick. And I have charted for over a year, with no variation its always the first week of every month, well foe some reason thats even changed, it started yesterday out of the blue. Its the same as always other than that. During this time I also am very very tired, more than normal. I can sleep all day, waking only when this feeling happens, then right back out, there are times its hard to wake me up. I am so grateful my mom lives with me so she can help with my children. This has happened for years, but not always for as long, it started as something that happened here and there, then became more frequent. I have had so many tests to try to figure it out, and no one has a clue. We normally try to plan around the week it happens, knowing it will mess up plans, and now its changing. Could it be anything to do with N? I also have cataplexy, and the more I learn of it the more I realize I have it pretty bad! It amazes me. My son said to me, mom I have a funny joke, sit down so I can tell you with out you falling! It was amusing. Anyway does anything like this or similar happen to anyone, or any ideas? I would love to have something to tell the doc as a thought on cause. My docs are awesome, they listen, believe me, and follow up on ideas. But they are stumped here. Not wanting to rack up more bills, but also not wanting to do nothing. With each month I drop anywhere from 5-20 pounds when it happens. I also have more memory issues during this time, if I am trying to recall anything from past, anything more than a few years ago it seems to trigger it, sounds insane, but if I think of a memory from the past very often it brings it on, even at other times of the month some memories seem to. I cant find any similarities in type of memories. It just happens, thinking hard, a memory and then dejavu feeling, then a weird smell or sense of smell and then feel like passing out and vomiting.
  15. thanks. Iam feeling like Iam on a roller coaster. I have a good day then 2 bad, then a good or 2 then 1 or 2 bad. But even my bad are better than before Xyrem, my better are so unreal better it amazes me. Part of why I am having so many ups and downs is due to my pain I think. With all my pain issues I am awake in pain many nights. I cant take pain meds and Xyrem together so it makes things harder. If my pain were not keeping me awake I would feel even better I think. And a lot of whats keeping me up is pain and whats slowing me down during the day is pain. Hopefully it keeps getting better.