I Can't Live Like This Anymore! Help!
Posted 10 December 2013 - 05:37 PM
Posted 10 December 2013 - 06:18 PM
Posted 10 December 2013 - 07:34 PM
The next time you have blood work done, request Vitamin D also. Many people with autoimmune related illnesses have very low Vitamin D.
When you fall asleep or wake up do you ever see, hear or feel things that are not there - or just seem odd and you cannot figure out if it really happened.
Do you dream when you fall asleep during the day- for a brief nap or a quick doze.
Does your body feel weak when you laugh, feel angry, get startled, get surprised or any other time.
Have you had any unexpected falls and took you a few seconds or more to get back up. Have you had clumsy accidents.
Have you given up any sports or activities that you used to enjoy because you were no longer good at them.
Do you have fumbley hands.
Do you get lost in thought but not remember what you were thinking about.
When you are falling asleep or just waking up does your mind wake up before you body and you kind of feel stuck- you just cannot get yourself to move.
If you think you have Narcolepsy, a predictable sleep schedule is of course very important. Avoiding large meals during the day helps. Protein and low carbs during the day helps.
If you really think you have Narcolepsy, Adderall or other stimulants, something to help you sleep if it is disrupted, sometimes antidepressants and lifestyle adjustments is the standard treatment.
Some of the symptoms of and treatment for ADHD overlap with those of Narcolepsy. If you really cannot afford proper testing, at least you have a working diagnosis that gives you access to some of the same medication for Narcolepsy.
Posted 14 December 2013 - 10:56 PM
Hank, these symptoms are great to know, but I by no means struggle with any muscular degeneration. For example, the question asking about me waking up- I never have that "sleep paralysis" feeling. Instead, my mind just can't get up. My body is ready to go, but I have to lay there for half an hour for my mind to stop being fuzzy. But that's assuming I wake up. When my alarm goes off (which I set 3, and 2 hours before because it takes me awhile to wake up) I usually turn them all off in the middle of my sleep or snooze because the alarm becomes part of my dream. And yes, sometimes my dreams are so vivid I think things are there, or I think i hear or feel something.
My Vitamin D levels have been low before, so I started taking my supplements again. Thank you so much for the advice. I'll continue to try to stay awake
Posted 15 December 2013 - 10:10 AM
I just want to clarify "but I by no means struggle with any muscular degeneration". Cataplexy is in no way related to muscular degeneration. Maybe those words do not reflect your accurate understanding of Cataplexy.
If you are thinking the muscle weakness of Cataplexy is a degenerative process, you will be relieved to know that it is not.
For me, until I really understood what Cataplexy was, it was very hard for me to identify that it had been happening to me. It is kind of like finding counterfeit money- until you know what to look for, every dollar seems legitimate.
Posted 15 December 2013 - 11:35 AM
Posted 15 December 2013 - 11:43 AM
Posted 15 December 2013 - 10:23 PM
Hank, how do you cope with your N and C? You're quite knowledgable and I'd love to hear your battles. Are there any dietary changes that you have implemented that has helped?
I failed on Xyrem after 7 months. It did help dig me out of an enormous sleep debt for which I am grateful. Effexor takes the edge of mild C but full collapses still happen. Trazadone is a Godsend for giving me an uninterrupted night.
Regarding diet, I just eat what I love and avoid big mid-day meals. I am a happier person when I enjoy what I eat, which is generally healthy. I tried the dietary game of "twister" and it made me miserable. I don't drink alcohol. I don't drink ice cold beverages because they make me sleepy. I take breaks about every half hour when driving.
If you have any questions, please let me know. This has effected my life greatly and I found myself living an unsustainable lifestyle. I am in the midst of a major lifestyle overhaul that manages my symptoms and allows me to enjoy my life. It has been a miserable past few years and I am changing that course.
Posted 15 December 2013 - 11:45 PM
Posted 17 December 2013 - 08:37 AM
At my dietetic internship once, one rotation site went out to lunch on Fridays. I kept avoiding it each week, until I felt bad and went. I warned them that I may fall asleep after I ate. They laughed, but sure enough, I fell asleep at my desk when we returned to the office. It's unprofessional and i was very embarrassed.
Ferret, as for Selenium and Iodine supplementation, what exactly are you interested in knowing? I'm curious if this helps with Narcolepsy? Otherwise, I'm only familiar with it helping thyroid issues (which is a very common battle as well for many many people). However, I'm not a supplement kind of person. I suggest it and take it myself if your levels are low, but during that time of supplementation I suggest people start learning about foods high in the vitamin/mineral that they can begin to incorporate in their everyday diet. Typically, supplements plateau after using it for awhile. (However, I don't make this suggestion to everyone because there are people who actually NEED supplements for many reasons). Anyways, selenium and iodine supplementation does slightly worry me because they are so easy to access in our diets that I'd be afraid supplementation could reach toxicity levels easily. (Again, I'm referring to the normal Joe who can absorb and metabolize these minerals just fine).
Posted 17 December 2013 - 11:17 PM
jenmjj - could try Vyvanse instead of Adderall, or Focalin XR.