Hank3326

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About Hank3326

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  1. Chronic Lyme is considered vague pseudoscience. It's basically a catch all of vague undiagnosable symptoms. An entire industry has cropped up to draw patients into unproven treatments. And who knows what is actually really wrong with these people. I think it's a scam and a sham and a shame.
  2. Concerta is similar to Ritalin but apparently a smoother ride. I'm sorry you're having trouble with this,
  3. I would recommend that you have your psychiatrist prescribe your medication. Unless you opt for Xyrem at some point, your psychiatrist would likely be experienced with stimulant medications. And pro/nuvigil can cause phychiatric side effects. And traditional stimulants can cause anxiety. So, you'd probably be better managed by your psychiatrist.
  4. Ok. I read your original post stating that you entered R.E.M. Twice and took Adderall to stay awake between naps. But you're not convinced of N because you took the Adderall. I think you should repeat the psg/MSLT if your doctor recommends, Otherwise, I do think you have N. chronic Lyme is pseudo Medicine and would not cause 2 Sleep onset R.E.M.s. I was in shock about my diagnosis as well. I completely didn't understand it. I denied that I had cataplexy, even though I actually have severe cataplexy. i started seeing a PhD psychologist to make sense of my experience. I really needed to talk it out.
  5. As long as you're aware of the controversy you're making an informed decision. I tend to stick with the CDC and medical governing bodies on controversial issues- they're very thorough.
  6. If you have to demand an apology in order to receive one, it's probably not sincere. If it was sincere, you wouldn't have needed to ask.
  7. Im curious about the doctor prescribing Xyrem to you. Either he/she is a seasoned doctor who feels very comfortable with a rapid titration, or he/she doesn't know squat about this medication. Slow and steady wins the race with Xyrem. When I got up to 4.5 x 2 per night, it took about 6 months of misery. And then I went into a severe Major Depression. So, I'm very aware of how awful that can be. Either way, the side effects you're experiencing are real and need to be taken seriously.
  8. You didn't meet the threshold for the CPAP which means that, if you snored, it wasn't very severe. And that means your sleepiness is being caused by something other than OSA.
  9. Good to know. I'm glad it's working for you and it's safe to use together,
  10. Here's my 2 cents. N started for me in high school. I should have been diagnosed in college, when Cataplexy started. I had struggles for sure. I had a rewarding career. I married (now divorced). I have 3 children. I was diagnosed "correctly" at age 45. I'm now on Long Term Disability. As a father, I do think that you are enabling. I also think your wife needs to tone it down a bit. Sitting around in PJs all day is not ok - period. I think she should be evaluated by a Sleep Medicine Specialist to determine what is N, what is Major Depression, and what is attitude/entitlement. I won't get all judgy on a soap box when your daughter may be suffering from Depression. If that's the case, treat it. If not, get moving. Let the doctor decide how disabled she is. If it is all medical, the doctor can assist her with filing for disability so she can become independent. If the doctor determines she is able to work, she can also become more independent. So, I would day, the goal either way is independence. Step #1 starts with a Sleep Medicine Specialist.
  11. There's a difference between sleepy, tired, and fatigued. It sounds like you're experiencing all 3. I sometimes feel fatigued when I've pushed myself too hard for too long. And I usually experience sleepy without the warning of feeling tired. its easy to use these terms interchangeably. When you're speaking with doctors, make sure you understand each term well so that you can accurately describe your experience.
  12. tsking melatonin and Xyrem together at bed time is not a safe idea. Are you doing this under the direction of your doctor? Anything that increases the effects of Xyrem can be dangerous. Sorry to sound like a hall monitor.
  13. Westcoast guy- how long has your excessive sweating been a problem? Is that something recent? It would probably be a good idea for you to get some blood work done, specifically for your thyroid.
  14. The naps are supposed to be 2 hours apart, not 30 min apart, to follow the circadian rhythm. By any chance, is your Sleep doctor a pulmonologist and is this a sleep apnea clinic? Also, is this clinic accredited?
  15. A regular neurologist will not likely understand N/C. Neither will a regular psychiatrist. I saw a psychiatrist to help me find medications that I could tolerate, which I did. However, this doctor was also convinced that N was a mental illness because it is in the DSM. And I was misdiagnosed by a neurologist. For this reason, I am reluctant to discuss any of my N/C symptoms with anyone but a Sleep Medicine Specialist with fellowship training. Find one please. If you don't understand how important this is, please ask.