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#1 andlostillgiven

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Posted 28 July 2013 - 02:15 PM

Hey everyone,

I've really enjoyed reading all your posts and have learned so much since I joined the forum a couple days ago. There were so many aspects of my life that I thought were anomalies which I have gained a lot of hope discovering I am not alone.

I am not diagnosed, but this seems to be the direction the doctors are headed; I have not yet seen a specialist however and have been feeling rather discouraged to see my doctors resorting to Wikipedia to try and figure Out what is going on here.

Since high school I have experienced what I now know as EDS. For a long time I thought my fatigue and poor sleep patterns were my own fault; I am a bit of a night owl and so I assumed I only had my habits to blame. I was passively assessed for a number of fatigue and concentration/memory related conditions, but none of them ever really quite lined up thankfully, as I was almost misdiagnosed with ADD. I often experience a clumsiness that I now believe may be related to cataplexy, though the symptoms I experience are too subtle to be sure. One thing I do know for certain is I experienced frequent HH and almost nightly experience mundane dreams where I fulfill a number of obligations that I later learn did not actually happen. I remember them as if they were real and have no ability to discern that they were dreams. I have often been put in seriously unpleasant situations due to this, being called a liar and whatnot when I swear that I have done something that clearly has not been done. This ranges from projects at work, meetings, paying bills, attending to personal matters, etc. I've often wondered if I am actually just losing my mind. Other interesting anomalies that I was wondering about from my younger days I used to party include vivid hallucinations from smoking marijuana (I tried it a few times when I was younger) and losing memory and blacking out from alcohol before even being significantly impaired. I used to have a high tolerance for alcohol, but yet would have trouble recalling anything after a few drinks sometimes, as if I were trying to recall a dream that was quickly fading away. Has anyone else experienced either of these things? I don't know anyone else who has.

The biggest factor is the EDS though. I haven't stayed awake through a whole movie or driven for longer than an hour without at least spending a lot of energy just trying to stay awake. I developed a pack a day smoking habit simply because that is the only thing that allows me to stay awake for long drives, and my job requires that I drive a lot; often 6 or more hours a day. I want to quit so badly but I can't drive safely without smoking.

My memory, attention span, ability to focus, motivation, reaction speed, and ability to reason all seem to be impaired on a frequent basis, but yet I sleep 7-9 hours a night. Caffeine used to help, but now I just have an expensive energy drink habit that just keeps me from getting worse.

I like to think that I am smarter than a lot of people out there, but as another poster put it, I feel like I'm driving around in second gear while everyone else is in fifth. I just barely stay with the pack, but I'm gonna blow a piston just trying to stay in the race.

#2 andlostillgiven

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Posted 28 July 2013 - 02:20 PM

Is there anything you fine folks can advise to ensure my diagnostics are accurate and not cutting corners? I believe there is a high likelihood I am suffering from N, is there anything I can watch out for to support or negate that belief that might be useful? Anything you have is welcome.

#3 Hank

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Posted 28 July 2013 - 04:44 PM

Ok- here you go:

- make sure you are being treated and tested by a Neurologist who is fellowship trained in Sleep Medicine. Not a Pulmonologist who is Board Certified in Sleep Medicine and not a general Neurologist.  

 

- make sure you are scheduled for both a Polysomnogram and MSLT back to back (you don't leave the same room for almost 24hrs).

 

- make sure any medications you are currently on do not disrupt sleep architecture. Some antidepressants, for example, suppress REM sleep.

 

- do not allow yourself to become anxious during the PSG and MSLT. Memorize a short verse or something to keep your mind occupied when beginning the scheduled naps.

 

- don't give yourself a lot of extra sleep (no more/  no less than usual) in preparation for the tests.

 

- avoid caffeine and check with your doc about discontinuing medications prior to the tests.

 

- bring a book or magazines to read. Avoid TV during the MSLT because it can be stimulating.

 

- wear comfortable clothing that is easily removed. For bed, shorts (instead of boxers because of the fly) and a short sleeve button down pajama shirt. You will be wired up and t-shirt or long sleeves will get in the way.

 

- when you are wired up, let the techs know if something makes you uncomfortable. For example, on my first test I had something tickling my nose and it was annoying. On my second test, the tech placed it differently and I was so much more comfortable. I did not know I could ask to be more comfortable.

 

- don't search around the web or forums for too much detail- people tend to post their negative experiences.

 

If you have N, sleep will come to you during the tests. Just let it happen, but do not try to force it. I hope this helps.



#4 andlostillgiven

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Posted 28 July 2013 - 05:23 PM

Excellent, thank you. I will keep all this in mind. I don't take any meds and I'm sure I have fallen asleep in less sleep conducive places, so that much should be simple anyway. I'm going for the initial consultation in a few days, so I will make sure I am being seen by appropriately qualified people.

#5 DeathRabbit

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Posted 29 July 2013 - 10:57 AM

I've not had it quite as bad as you, but I have had some "mundane" dreams in which I've had conversations and I'll reference it the next time I actually talk to the person and they'll be like "lolwut? :wacko: "



#6 andlostillgiven

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Posted 29 July 2013 - 11:34 AM

Haha yeah I am well acquainted with that scenario in the worst way. I thought I got a raise at work and emailed my boss asking when it was effective when I didn't see it on my paystub... That was the source of a great number of wtf's from both ends and a rather disappointing resolution for me...

#7 drago

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Posted 31 July 2013 - 02:33 AM

Since high school I have experienced what I now know as EDS. For a long time I thought my fatigue and poor sleep patterns were my own fault; I am a bit of a night owl and so I assumed I only had my habits to blame. I was passively assessed for a number of fatigue and concentration/memory related conditions, but none of them ever really quite lined up thankfully, as I was almost misdiagnosed with ADD. I often experience a clumsiness that I now believe may be related to cataplexy, though the symptoms I experience are too subtle to be sure. One thing I do know for certain is I experienced frequent HH and almost nightly experience mundane dreams where I fulfill a number of obligations that I later learn did not actually happen. I remember them as if they were real and have no ability to discern that they were dreams. I have often been put in seriously unpleasant situations due to this, being called a liar and whatnot when I swear that I have done something that clearly has not been done. This ranges from projects at work, meetings, paying bills, attending to personal matters, etc. I've often wondered if I am actually just losing my mind. Other interesting anomalies that I was wondering about from my younger days I used to party include vivid hallucinations from smoking marijuana (I tried it a few times when I was younger) and losing memory and blacking out from alcohol before even being significantly impaired. I used to have a high tolerance for alcohol, but yet would have trouble recalling anything after a few drinks sometimes, as if I were trying to recall a dream that was quickly fading away. Has anyone else experienced either of these things? I don't know anyone else who has.

The biggest factor is the EDS though. I haven't stayed awake through a whole movie or driven for longer than an hour without at least spending a lot of energy just trying to stay awake. I developed a pack a day smoking habit simply because that is the only thing that allows me to stay awake for long drives, and my job requires that I drive a lot; often 6 or more hours a day. I want to quit so badly but I can't drive safely without smoking.

My memory, attention span, ability to focus, motivation, reaction speed, and ability to reason all seem to be impaired on a frequent basis, but yet I sleep 7-9 hours a night. Caffeine used to help, but now I just have an expensive energy drink habit that just keeps me from getting worse.

I like to think that I am smarter than a lot of people out there, but as another poster put it, I feel like I'm driving around in second gear while everyone else is in fifth. I just barely stay with the pack, but I'm gonna blow a piston just trying to stay in the race.

 

First, one of the reasons I had a MSLT/PSG test was that I mentioned to my doctor that I had frequent Sleep Paralysis episodes and thus developed good sleep hygene to combat it. HH is a prominant feature for me, too.  I had a similar experience with people thinking I was weird/lying/breaking promises -- mostly because I have the ability to sustain a full conversation and apparently sound coherent whilst asleep (technically I think this counts as automatic behavior) so my parents would ask me to do chores (and I would agree, since I wasn't awake, I never remembered), or I would talk to people on the phone/make plans but never remember them later.

 

Before my recent incidence of insomnia, I slept a solid 6-9 hours a night, too. Mostly because I developed sleep hygene to prevent SP attacks. I still had narcolepsy, I just didn't know it yet.

 

Also, do you exercise? Strange at it may seem, working out makes sleeping more efficient or something for some people. It certain did for me.

 

drago



#8 andlostillgiven

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Posted 06 August 2013 - 07:57 PM

That's crazy, must be really tough to deal with...I don't so much talk while asleep as completely lose memory of the first and last portions of the day, varying based on my level of fatigue, and conversely remember dreams as if they had actually happened.


So I just got my results back from my first sleep test, the doctor did order me the wrong test but on the plus side I did find that I do not have sleep apnea.

They did find very frequent pulse variability (99 episodes of 6 bmp or greater variation) and I was curious if this is something either consistent or inconsistent with N? Unfortunately my doctors thus far have been...well... Reading about N on Wikipedia to cross-reference my concerns. It is both really helpful that I can but kind of sad that I have to ask you guys instead of my doctor, haha.

#9 andlostillgiven

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Posted 06 August 2013 - 08:01 PM

Also I do not presently exercise much, but I am in fairly good shape and have a moderately physical job. I used to work out every day but this did not have a significant positive Effect; if anything a mildly negative effect.

#10 andlostillgiven

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Posted 08 August 2013 - 07:11 PM

Very excited, I thought I didn't have any fellowship trained Neurologists in my area but I hit the jackpot-a publicly funded sleep lab full of them! Got my referral, now hopefully it doesn't take me a year to get in...they specialize in research and advanced diagnostics, so whether it's N or/and something else, surely they'll be able to figure it out...

#11 JEM

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Posted 09 August 2013 - 11:19 AM

Very excited, I thought I didn't have any fellowship trained Neurologists in my area but I hit the jackpot-a publicly funded sleep lab full of them! Got my referral, now hopefully it doesn't take me a year to get in...they specialize in research and advanced diagnostics, so whether it's N or/and something else, surely they'll be able to figure it out...

Very excited for you!  I am new to NN and this is actually my first post after reading several threads the last 3-4 days.

-First I can tell you from reading and from my experience that everything Hank said is spot on.

Now that you have found a sleep lab they should do the PSG/MSLT together to get a clear picture for a proper diagnosis. 

I agree also with Hank to get the correct diagnosis before searching the web for detailed info on N or any condition.  Do research your doctors and make sure you go to the best you can, and feel comfortable with them.  But let them do their job to diagnose.

-Once diagnosed, whatever it is, there will be a certain amount of relief (may be the wrong word).  But there is solace in knowing what you have.  In knowing what is "wrong with you".  There is some certainty in the known as opposed to the unknown.

-Then I would recommend you research like crazy all you want to really understand to what degree you have whatever they determine.  I did not take that advise myself and only now, 3 1/2 years after being diagnosed, did I find this forum.  You are way ahead of me!  



#12 andlostillgiven

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Posted 09 August 2013 - 01:31 PM

Thanks JEM, I can't help but skip the line when it comes to research, but yeah I am doing my best to make sure I'm not jumping to conclusions. What I do know is that I have a serious sleeping problem, and I've never seen so many people I can relate to and empathize with in one place as here... Not that I've found any anywhere else :P

It's going to be months till I can get in for the studies, and I'm pretty anxious to get moving and making progress, but it is exciting to know I'm on my way. No matter what the Dx is, I will be immensely relieved... So long as there is treatment beyond basic sleep hygiene and/or stims...I can hope anyway.

#13 JEM

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Posted 09 August 2013 - 02:57 PM

Ok!  I say be persistent to get a MSLT done asap.  Until then be safe.  I totally can relate to issues driving distances.  Have you ever tried to schedule in a nap sometime midday or afternoon?  Or while driving schedule in a little more time to stop and run around the car and stretch - change your physical position to jar your body a little? Seems basic but does help some.

-2 other ideas till the study:

 

    Keep a sleep journal.  Record your sleep and sleepiness.

    Record how much sleep you get each night and from what hour to what hour.

    Also record at what times during the day you are hit with sleepiness and fighting your lids.      

 

    Keep a food journal.  Record what you eat and drink each day. 

    Record when you eat and drink each day.

 

Over time you can compare the two and might see a pattern develop.  A correspondence possibly between when or what you have eaten and drank and when you have slept, slept well, had more daytime sleepiness.

-I firmly believe that diet has a lot to do with everything about our bodies and thus any irregularity in the body.

Just some thoughts.  Be well.  Be safe!



#14 andlostillgiven

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Posted 09 August 2013 - 03:08 PM

Thanks! I am pretty cautious, I stop for stretch breaks lots and although it gets me funny looks, I am often found shadow boxing on the side of the highway because that is the best way I've found to get my heart rate up and combat lethargy. Unfortunately sometimes that is not enough, which is the root of my smoking problem, chasing away the worst part of the fatigue 10 mins at a time at the expense of my overall health -.-

Think I will take your advice on the sleep journal, we'll see if I can remember/push myself to do it consistently but it sounds like a pretty good tool to see if there is anything more I can do myself to combat the fatigue.