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#1 Brennan

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Posted 23 March 2013 - 10:52 AM

Its somewhat liberating in a way reading some of the posts here on this board, though I'm not sure where to begin.  I finally have the answer to what seems like a lifelong struggle - and now I'm struggling with even more issues.  I suppose I'll begin in saying what I've read several people say - "What now?".

 

I'll start with a quick bio.  My name is Brennan.  I am 28 years old living in SoCal.  When I was 14 years old my weight had gotten upwards of 320lbs.  By the age of 16 and by sheer determination and willpower I lost about 165lbs.  I've kept it off for nearly 15 years and stay fit in the gym going everyday, usually around my randomly scheduled naps.  You may be wondering why I am mentioning this - in truth I am wondering if narcolepsy could have contributed to my childhood obesity. 

 

To back up a bit, I had dropped out of school by the age of 15.  There is still holes in the wall in my old bedroom - from me punching through it resisting my parents from waking me up in the morning.  By the age of 18 working 40 hours a week I found it completely difficult to function at all.  I thought really that I was just "lazy" - even though I was not raised to be.  I was so hard on myself, and have been even until just recently (actually, I'm still hard on myself - maybe worse now that I have the answer).  What triggered me to see a sleep specialist was that I started having episodes of sleep paralysis.  Of course my parents at the time (maybe some of you can relate) were always the ones to say "there's nothing wrong with you...exercise more - eat healthier - you're just depressed - etc".  Blah.

 

I did a sleep study at Oschner Clinic in Baton Rouge.  I was 18 and I remembered the sleep study being a nightmare (at least at the young age I convinced myself that it was).  To sum up that entire experience, the first line on the sleep study report "-ME- had a complete nocturnal polysomnography, but the technician made an error in the data recording process that resulted in the loss of all the PSG data.  The technician reported that there were about 6-8 hyponeas and no other respiratory events during 8.5 hr recording period...."  They wanted me to go back, and I refused.  I guess my suffering for these ten years was mostly my own fault.  On this sleep study the MSLT was not lost, and it showed in the 5 naps I fell asleep in two of them.  One in 10 minutes stage 1 and 2 nonREM, and the other in 3.5 minutes with stage 1 and 2 nonREM.  I never followed this study up with a doctor because in my own mind it was basically saying in the "Summary" that nothing was wrong with me.  Thinking back now I was also taking a hefty dose of Prozac at the time which I believe blocks REM sleep?  I'm not sure.  It says somewhere on the report that "narcolepsy is not likely but not to be ruled out" - it said this in the same paragraph where it says "patient doesn't take naps" - well at the time working so much I couldn't take naps.  I also had no idea that some sleep studies could be a "wash" in terms of being unable to sleep, etc.  Reading that here was very comforting to me because I had gotten this first study and thought for the longest "nothing is wrong with me".  But then again, I never followed up with the doctor to actually go over it with me...

 

Three months ago I did another sleep study (ten years later from the first).  I remember in going in I told the technician "I'm not going to fall asleep".  His simple reply was "Brennan, believe it or not over 85% of people fall asleep.  Regardless we will be able to get some data from you."  This really helped me to relax!  At the time I was taking Vyvanse 70mg in the morning for ADHD prescribed by my ADHD doctor (I had started on this medication about 1.5 years ago, and it really changed my life.  I was able to get in motion the starting of a computer business and actually have somewhat of a social life - even though my social life generally ends at 5pm even now).  I also was taking 20mg of Adderall in the evening (I usually would take it around noon when the Vyvanse wore off - after my nap).  My sleep specialist had told me to stop taking the Adderall and Vyvanse 3-4 days before the study.  I was also taking Prozac at the time, and he told me I could continue taking it with the sleep study - however, I chose to stop taking it three weeks before the study.  I did an overnight polysomnography and a MSLT.  I was diagnosed with Mild obstructive sleep apnea (which I'm told is very unusual for someone that is in shape like myself), and Narcolepsy (in 4 naps my mean sleep latency was 4 minutes 30 seconds  5:30, 2:30, 3:00, 7:00 {and the last / longest latency nap I think was because I was so ready to go home}).  Though I have to say this test was such a pleasure to do compared to what I remembered - if you're thinking about doing a sleep study they really are not bad at all...

 

Over these ten years I've struggled with alcohol and drug addictions.  I've struggled with the AA nonsense that "nothing is wrong with you, you're just an alcoholic!" mindset. (I am in no way discrediting AA from helping some people - personally it was a huge detriment to my "growing up" as a human being.  I've been fine since I gave up on the nonsense, I don't abuse medications, I don't abuse alcohol (I don't drink anymore in actuality).  Addiction is a learned behavior.  I am honest about my past and I told my current sleep specialist my history.  He is a great guy but is leery to prescribe me any helpful dose of stimulants (though I will admit I have only been his patient for 3 months now).  I stopped seeing my ADHD doctor once I got the Narcolepsy diagnosis because honestly I was thinking with the Narcolepsy treatment I "wouldn't need" the stimulants anymore.  And I also was thinking that maybe the ADHD was just a symptom of the untreated narcolepsy.  Big mistake...

 

I volunteered to stop taking the Vyvanse 70mg, thinking the Xyrem would change everything.  My sleep specialist initially had me on 10MG Adderall 2x per day.  He has since then gradually gone up to 20MG 3x per day.  I've barely been getting by with this dose and have been self medicating /compensation with coffee.  I still needed (in the past, before the narcolepsy diagnosis) 1-2 naps with the  70mg Vyvanse + 20mg Adderall.  I was thinking with the Xyrem (I'll get to that in a bit) I wouldnt need any of the stimulants. 

 

I read somewhere on the board that someone had issues with "caffeine" - they mentioned that it had an affect similar to "mainlining crack".  Going to go on a tangent for a quick second:  About a year ago I was seeing a gastroenterologist because I was convinced my drowsiness was linked to my digestion.  He suggested I go on a Candida diet (which I later found out he was just "entertaining" me as there is no real science backing the "Candida" diagnosis).  On this diet I eliminated coffee for 4 days.  For these four days I continued on my Vyvanse and Adderall and my anxiety as almost nonexistent!  When I did have a cup of coffee after those 4 days (as the Candida diet is nearly impossible), I felt like I had "mainlined crack". 

 

I decided about a month ago to stop coffee again.  This time I lasted two weeks.  During those two weeks, I was taking upwards of 120MG adderall to BARELY function.  I made an appointment 2 weeks early with my sleep specialist to let him know what I was doing - as I really want to be honest and not keep anything from him.  I think it scared the hell out of him as he said that was far too much Adderall and that I should just continue to drink coffee.  He was willing to write me another prescription (as I would run out), but I refused - I wasn't trying to get more pills.  I was just trying to let him know that a) I had little to no anxiety without drinking coffee and B) 120mg without coffee really was only helping me "so so".  Anyway, I just self medicated the remaining prescription of Adderall with lots and lots of coffee... and again when I started back I felt like I had "mainlined crack".  Any suggestions on eliminating coffee without having to increase the stimulants?  Coffee makes me crazy with anxiety but I can't function without it in combination with stimulants...at least thus far.

 

He (my sleep specialist) also started me on Xyrem.  I struggle so much with this medication.  I am currently on 9 grams, 4.5+4.5G doses.  Its awful going to bed 4+ hours without eating, but I've managed.  My main struggle is the fact that I take the first dose around 10-11PM while in bed.  It knocks me out within a few minutes I suppose (keep in mind I am having to wear a CPAP device which sometimes makes it much more difficult to fall asleep...I'm trying to get my body adjusted to it but even 3 months later its a struggle).  Nearly 4-5 out of my 7 nights per week, sometimes more, I wake up within 1 hour.  I am wide awake and feel great -ready to start my day - which is a new and great feeling.  The only problem is that I'm lucky if its 11pm-Midnight - not exactly when I want to start my day.  If you are new to taking this medicine you can indeed feel it affecting you.  This effect for me is not pleasurable in any way and I do not understand how people would want to abuse it - and trust me I have abused medications in the past.  That being said, I have experimented twice in taking my second dose right after waking up (an hour later) in which the medicine had completely worn off.  (I have woken up many times while it was still affecting me, to which I just went back to sleep).  95% of the time when waking up an hour later I lie in bed watching TV until its been 2.5 hours and I take the second dose - to which I fall asleep in a few minutes.  The second dose is the most awful in terms of having to fight the raging hunger pains.  I am quite hungry by 3am.  All this being said, 4-5 out of my 7 nights per week after even the SECOND dose, I am up in exactly 1 hour - wide awake and ready to start my day.  Though at this point its usually about 1am-2am.  These past 2 weeks I've gotten up at 3am, made coffee and just started my morning.  I'm really curious if anyone else has this problem, and also if they found a remedy?

 

I've told my doctor this and he started me on 5MG of Ambien to take with my first dose.  He really is willing to work with me which I appreciate so much.  Though I've honestly noticed no improvement in terms of waking up an hour later wide awake.  Funny thing is I've always been a very light sleeper, but generally before the Xyrem I'll sleep a full 8-10 hours.  I do notice I am about 10-15% less sleepy throughout the day WITH the major reduction in stimulants...well, maybe that an exaggeration.  I think sometimes I don't notice / remember  a difference unless I write down in a journal my level of sleepiness, etc.  Maybe the difference is really drastic.  -shrug-

 

I am considering having the sleep apnea surgery as trying to sleep with the CPAP machine isn't helping the situation.  My sleep specialist says because my case of apnea is so minor they may not perform the surgery.  Any thoughts on this?

 

Yesterday I had an appointment with my ADHD doctor.  I hadn't seen her in quite some time, and honestly I was curious if perhaps I really do have ADHD, or as I mentioned before - if maybe it was just a symptom of the narcolepsy.  My older brother has severe ADHD (and definitely does not have narcolepsy) - though I'm not sure if him having ADHD is relevant to anything.  Anyway, before seeing my ADHD doctor I called my sleep specialist's office to let them know, and I have an appointment with him on Monday.  I want to keep him posted and do not want to seem as if I am "going behind his back" for medications.  I likely will let him read this post at my next appointment.  My ADHD doctor is a specialist and has had experiences with people with both Narcolepsy and ADHD.  She started me back on Vyvanse and I'll say it makes such a tremendous difference.  I've been meaning to make a post on this board for quite some time - I'm just now able to sit here and write - not so much drowsy and completely able to focus.  Hopefully when I know my sleeping & Xyrem combination is worked out I can eventually stop taking the stimulants.

 

I have tried Provigil 200mg for one week.  I was prescribed this WITH the Vyvanse many months ago, because I was visiting family in Louisiana and had some huge projects to do in a short amount of time.  I couldn't afford the 2+ naps I usually needed because I was short on time (this was before I was diagnosed with narcolepsy).  I found absolutely zero improvement in my drowsiness with the Provigil and also found that I had suicidal thoughts for that short time I was on the Provigil.  Though I will admit perhaps it was being around my family that made me crazy - they have a tendency to do that.  Haha!

 

My sleep specialist had mentioned to me that if I were to be put back on Vyvanse (which I am as of yesterday), I would have to see my ADHD doctor.  I'm going to have her prescribe my stimulants and my sleep specialist prescribe my sleep medicine.  The problem here is that I do not have mental health insurance and my ADHD doctor is so expensive having to pay out of pocket.  Does anyone have any feedback for me as far as medications go?  I am currently back on the Vyvanse 70mg.  I have a slew of 20mg Adderall from the last appointment with my sleep specialist.  My ADHD doctor told me I can take a 20mg Adderall in the afternoon if need be (which is the exact dose / medications I was taking before I volunteered to go off of the vyvanse all together).  I also bring all my medications to my sleep specialist so he knows I am not abusing them.  As I mentioned before I do not blame him at all for having trust issues - as I'm sure there are many patients out there to take advantage of doctors.  But I must admit it is a little frustrating, I almost regret bringing up my past in the first place.  And I suppose the most frustrating thing of all is I am so impatient.  I expected (I know this isn't realistic) that after the narcolepsy diagnosis that I would be "normal" - overnight.  But alas that has not been the case at all...

 

I was also wondering if any of you have any issues with (for me, my two very close friends that I share everything with - and my parents) people labeling me as a hypochondriac. It really is discouraging.  Even with the study reports on paper I will still let it get to me in so many ways... if so how do you deal with them? 

 

I really am mostly curious about anyone else having the issue with Xyrem (in waking up 1 hour after each dose, wide awake). 

 

Sorry for this long rant, I wanted to make sure I covered everything as I am sure there's got to be someone out there that can give me a little hope / suggestions.  Thank you for taking the time to read my ranting.  I really appreciate all your feedback.

 

 

-Brennan

 

 



#2 DeathRabbit

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Posted 25 March 2013 - 09:43 AM

Yea, for some reason, being on those stronger stimulants, even if you've been off them for a while, seems to permanently change the way your body reacts to caffeine. I get hyperjitters for about 30 minutes, then super-super foggy. Every prescription stimulant I took would eventually have this effect as well. After a while, I think it gets to the point where when your brain deliberately downclocks as soon as it detects a stimulant. I've sworn off stimulants completely, because I'd rather deal with the normal fatigue, rather than bouncing back anfd forth from hyper to walking dead constantly. I also had a similar proble mwith the Xyrem, though it worked longer for me. It seemed each dose would last three hours, then wake me up, and it would be impossible to return to sleep. Some people ssay that a few hours of Xyrem sleep is better than several hours of normal sleep, but even before N, I had to have 7-8 hours, so the 6 hours on Xyrem just didn't cut it.



#3 doinmdarndest

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Posted 26 March 2013 - 01:30 AM

there's huge differences in individuals' response to 'stimmies'.  like deathrabbit, i, too, as the result of their use, respond to caffiene different than before.  only in my case, coffee retains it's place in my diet 'just for the taste of it'.  caffeine has almost -0- impact for me anymore.  i can drink coffee right before bedtime.  if drank w/ stimulants present in me above therapeutic levels it yet has its wakefulness promoting effect.  enhances wakefulness from my adderall, yet w/o it coffee alone will do no good even if consumed by the carafe.

 

there are those of us who get bad experiences w/stimulants, unpleasant enough to make any benefit they bring not worth the adverse effects that simply 'go w/the territory' in the case of such a person.  others find any adverse side effects the stimmies bring them a price worth paying for the wakefulness.  that wakefulness is mine to enjoy and i can actually participate in my own life-a thing i never before stimulants was even aware was denied me at all times in an unmedicated state.  i can hold a job.  i can do chores at home now and then after working 8 hrs the same day i do a given 1 or more such task-even more grueling ones such as repairing my truck.  this was just not possible for me before.  it was depressing knowing other men hacked hard work well whereas i barely managed acceptable workplace performance.  i like being an 'ace hand'.  i do not wish a return to life on (construction) site w/other men making good natured jokes at my expense. an example:  

 

co-worker: "hey, doug, do this...(co-workker holds his own upraised wrist and holds it in the other hand like a dr. checking a pulse)

 

me: "ok" (i do the same)

 

co-worker: "feel anything?"

 

me: "yeah...."

 

co-worker: "just checking!"

 

no thank you.  i'll stick w/ the present.  i'm w/a public works builder.  recently as we neared completion of an outstandingly designed and well-funded municipal senior center my firm's employees as well as those of all subcontractors there were pleasantly suprised to learn that lunch was on the city....bbq, and they had tables/chairs the whole nine yards.  the mayor and city council were having lunch w/the construction workers.  and guess who the general contractor CEO comes and sits with after leaving the buffet?  that's right.  little old me, the superintendant's laborer.  think i'll keep the stimulants.  beyond their continued availability will ever await eds/fatigue, my grim and joyless foes.

 

i respect the decicions of others who abstain from stimulants.  i can only hope they do the same for me and others like me who feel we need the stimulants to survive.

 

i would have it that my words could impress the following adequately:  A THREAT TO THE WELLNESS OF ONE NARCOLEPTIC IS A THREAT TO THE WELLNESS OF ALL PWN.  in the end, our ability to go forward as a group w/ this in mind this may decide our futures.  let us have therefore loyalty/strength/honor. 

 

i know that is so cliche' yet it fits.  that's what i see.  i, for one, would prefer pwn be given greater control over their treatment options.  be they stimulant rx or be they other options.  i have no reason to suspect my opinion is shared by many others, or that i can make a difference in this forum or anywhere else by committing time/energy to simply asserting what i beleive.  on the other hand it is the right thing to do.  so here i am, at it again.  to what avail i cannot know. 



#4 exanimo

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Posted 27 March 2013 - 01:15 AM

Well I don't have much to add to the medications part. I have not tried xyrem, nor any stimulants like adderall. I am currently taking Nuvigil, which seems to help me. I didn't think it did at first, but since then (after skipping dosages here and there) have realized that it really does make a difference.

 

But on the obesity comment. Narcolepsy is believed to be an autoimmune disease. Why? Because it has been shown to be caused by the loss of hypocretin (also known as orexin) within the hypothalamus of the brain. It's not known as to why these cells are lost, but it seems plausible that the immune system attacks them (such as happens with all autoimmune diseases). 

 

If you look up hypocretin, you will find information on what this particular neurotransmitter does. Besides regulating sleep and wake cycles, it also plays part in appetite. Further, I've read studies (can't remember specifically where, or what titles) that say those with N have less brown fat (good fat - the kind that is easily burned) as opposed to white fat. Interestingly enough, infants have brown fat, which as they grow, they gradually lose the majority of it. 

 

So in short, there is definitely some type of link to narcolepsy and obesity. Not to mention the fact that EDS, as well as poorly regulated sleep patterns, is also a likely contributer to obesity. I mean, I don't mind exercising, it's not my favorite thing, but when I do it, it can be fun. But I don't often feel like I have the energy to workout for an hour or two, especially with work and school. Sugary foods, are also good for keeping one awake. So I'm sure that I'm not the only one here, who might reach for a candy bar every now and then when I start to feel a little foggy.

 

If your sleep apnea isn't very severe, perhaps you don't need the CPAP? Do you notice a difference in your EDS when using it? If not, then maybe it's not necessary. 

 

I can relate to the feeling that the diagnosis would change something. It is a cruel fact that there is no cure for Narcolepsy. It is a miracle that there are treatments that can slightly (sometimes greatly) improve ones quality of life. But it can also be a very stressful road trying to find the right treatment for each individual.

 

Keep trying! Faith can do many things. I'm glad you found your way here. I've known a few people with N, who for whatever reason, never really chose to look for support. I can't imagine not having this resource, as it has brought many realizations, not just about my Narcolepsy, but about myself. You mentioned being more hard on yourself now, with your diagnosis. I can relate to this. I don't know exactly how, but somehow it has changed my view of my EDS. I feel like I have let it become an excuse (that's not really the right word...but it will have to do). I have gone downhill in school and work. Always running late and missing important dates. I always had trouble with being on time (and I am constantly letting that affect my mood), but it seems to have gotten worse. I don't know why or how it is related, but it seems that it must be. 

 

Good luck!



#5 lkl

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Posted 27 March 2013 - 03:34 AM

Another option for your Mild Sleep Apnea could be a mandibular advancement dental splint. http://www.adelaides...ment_splint_mas I wear one of those, mainly for snoring, since one of my sleep docs thought that snoring could be disrupting my sleep. It took a few weeks or so to get used to at first (but I think it would be less intrusive than a CPAP machine), but now I don't like sleeping without it. I can perceive the restriction in air flow as I drift off to sleep, if I don't wear it. And my repeat sleep studies show that it is stopping my snoring. It is not suitable for everyone, but it might be worth looking into, since your apnea is mild.



#6 MINItron

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Posted 27 March 2013 - 07:43 AM

I agree with Examino and Iki. There is a strong connection with Narcolepsy and a tendency towards obesity through more than one avenue. I also agree that maybe there is a less intrusive treatment for your apnea that you might benefit from if it is mild. I personally don't have apnea, but had to test fit a mask for my PSG. I don't know how people sleep with those things. It would drive me insane. We all keep saying it, but the road to finding the right treatment for each individual can be a hard one. Everyone is different, and it can be hard to get the right balance.



#7 Megssosleepy

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Posted 28 March 2013 - 10:38 AM

It took me a good 3 months or so to get used to the 4.5x2 dose of Xyrem.  I still only get 3 hours maybe 3.5 on each dose.  My alarm goes off at 6, but I am always forced awake at 5am (total crap) I can usually drift in and out of sleep until I have to force myself out of bed.  How long have you been on the 4.5?  Also you mentioned not eating for 4 hours.  I used to do that as well thinking it would help the Xyrem last longer... it did the opposite.  I make sure I don't eat past 8, and I am in bed by 10/10:30 every night.  (If I have a really heavy meal I may make sure its 3 hours before bed)   

 

Ive been on Xyrem since I think June/July and I still have crappppy EDS but I do not have nearly as many sleep attacks, maybe one or two around 2:00pm- 5:00pm.  Although last night it hit around 8:00pm :( I can now drive with no problem! So thats a very good thing!!  I still don't have the energy to do the extra things, so I pick my battles.

 

I am very sensitive to the stimmies so I only take a small amount if needed like 5mg around 2pm, and I drink coffee in the am and some mornings I chug a mountain dew when I first wake up.  Before Xyrem I was taking 10mg in the am and 5mgX2 or X3 during the day.  

 

I also thought that having a DX would solve all of my problems only to find out it caused more!  I go through different stages of denial all the time (I was DX in March of last year).  Its hard to come to terms with the fact that I will always be this way.  I started out being very hard on myself, but now I constantly tell myself its not my fault.  It not your fault and you need to cut yourself some slack.







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