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I Can't Live Like This Anymore! Help!


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#1 jenmej

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Posted 10 December 2013 - 05:37 PM

I CAN'T LIVE LIKE THIS ANYMORE! PLEASE PLEASE HELP! I have not been diagnosed with Narcolepsy yet (I can't afford the sleep study yet, because I'm a broke grad student). However, I am a dietitian, which means I eat well and stay active. Thus, my blood work has come out great, and my B12 and iron (among other fatigue related blood work) came out normal. However, since I was a little girl, I needed to sleep sleep sleep! I slept on the way to school, during nap time (when it was available), on the way home, and by 8PM with no hesitation. I was diagnosed with ADD when I was 12 because I could not pay attention for the life of me. Now that my life is crazier as a 25 year old, on my day off (if I get one), I sleep about 4 times a day. I only wake up to eat and/or use the bathroom. After I get off of work, I will take a nap at 5 PM and be perfectly ready for bed by 9 or 10PM. I can sleep whenever and wherever I want. (Except I can't sleep sitting up).
 
I currently take Adderall for my ADD, but I actually take it to wake me up. **I CAN NOT WAKE UP WITHOUT HELP** which means I'm always late to class and/or work, if I don't set an alarm to take my medicine. At this point in time, I actually think I was misdiagnosed with ADD when really I was suffering from Chronic Fatigue. Nevertheless, my dreams are so vivid, they are like movies. I get a range of nightmares to interesting movie like dreams that I just snooze my alarm for 3-4 hours (or simply turn it off while sleeping) because I want to know what happens next.
 
Ontop of the intense dreaming, I AM ALWAYS tired. I went to Vegas years back, and slept the entire time. I slept during my best friend's bachelorette party, and I could barely stay awake during her reception. (So, she's very upset with me). It's even hard to hold relationships because I'm extremely busy, and the little down town I do have, I just want to sleep. So I barely give the poor guys attention, and I hate it. Not to mention, after sex, I pass right out. My Adderall works for only a brief time, but the fact that I need naps on it is crazy to me. (I take 10-15mg these days because I hate the intense side effects with higher dosages). 
 
I am asking that someone please provide any suggestion, advice, and comments on this situation. I hate that I am so young and I can barely live life. (I am dreading being a mother one day, because I know I will be struggling to stay awake). Do you recommend anything that can help me until I can afford the sleep test? Do you think I actually have narcolepsy?  


#2 ruthie s.

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Posted 10 December 2013 - 06:18 PM

The same was with me - I took adderrall to keep me awake, for ten years, before I got Narc. diagnosis. The adderrall worked great for me; still does. I take two 30mg (not time released) per day, could not live with out it - my life goes on because of this medicine.

#3 Hank

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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.



#4 jenmej

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Posted 14 December 2013 - 10:56 PM

Thank you so much for your responses. Adderall has been a life saver but I hate how it makes me feel! I definitely need something with less side effects.

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 :)

#5 Hank

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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.



#6 jenmej

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Posted 15 December 2013 - 11:35 AM

When I said muscle degeneration, I really was generalizing and simply referring to any muscle issues (ie weakness, shakey, etc). I will be working in the hospital, so cataplexy is something I should understand. However, I wasn't necessarily referring to cataplexy when I said that. I apologize.

#7 jenmej

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Posted 15 December 2013 - 11:43 AM

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?

#8 Hank

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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.



#9 Ferret

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Posted 15 December 2013 - 11:45 PM

As you are a dietician jenmej, I would be interested in your thoughts on Iodine and Selenium supplementation.

#10 jenmej

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Posted 17 December 2013 - 08:37 AM

Hank, the reason I ask is because food puts me to sleep, like you said, if it's a big mid day meal. I avoid my lunch breaks because once I eat, it puts me to sleep. My ex boyfriend had a joke that he knew the perfect way to "shut me up" is by feeding me :P

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).

#11 IdiopathicHypersomniac

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Posted 17 December 2013 - 11:17 PM

jenmjj - could try Vyvanse instead of Adderall, or Focalin XR.