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#1 Aranson

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Posted 13 May 2013 - 10:58 AM

Hi, all.  I have decided to post here because I am once again beyond frustrated and tired of not finding any answers.  I have suffered with EDS since I was 13 years old.  I sleep through the night with some awakenings (usually to go to the bathroom), but I do not feel refreshed when I wake up.  I will frequently nap at least once a day.  My naps are usually 2 to 3 hours and I do not feel much better after.  I am now 28 and over the years I have seen several doctors about my condition.  In the past, it was always attributed to anxiety or depression. Later, I became convinced it was my thyroid because I experienced other hypothyroid symptoms (cold intolerance, dry skin, difficulty losing weight, etc).  My doctor did a TSH test, and it turns out that mine was slightly elevated.  I started Armour thyroid, and my cold intolerance improved, but my EDS did not.  My TSH is normal now, and I have since been tested for a plethora of other conditions.  The only abnormality was a low vitamin D level.  That was corrected , but still no relief.

I finally resorted to having a sleep study done.  I tested negative for sleep apnea, but I did have several disturbances in sleep throughout the night, including a good bit of limb movement.  My sleep latency was 1 min and 45 sec.  My doctor gave me a trial of Klonopin to see if it would help me get a better night's sleep. I noticed no difference.  My spouse has never complained about me moving a lot, so I doubt that I have PLMD.  The only thing my spouse has mentioned to me is that I will randomly sit up in my sleep and stay that way for a while.  I also occasionally talk in my sleep and I would sleep walk when I was younger.  I am a light sleeper and I do experience quite a bit of half awake/half asleep moments throughout the night.

Because my PSG was negative, my doctor now wants to test me for narcolepsy.  When he mentioned this, I was baffled.  I never even considered narcolepsy as a possibility.  I still don't feel like I have any symptoms of it other than EDS.  I do get a strong urge to sleep when I am emotionally overwhelmed, but I have always thought this is because it is easier to sleep and block it out than deal with it.  I have no symptoms of cataplexy that I know of.  The only thing remotely close is what I consider panic attacks.  Sometimes when I feel strong anxiety, I get lightheaded and I have to lie down.  This is accompanied by an increased heart rate, muffled hearing, and breaking out into a cold sweat.  

I am just very confused.  Does any of this sound like narcolepsy?  I have scheduled a MLST, but I had to wean off of my Cymbalta first because it can affect REM sleep.  I now have more anxiety, and I'm afraid this will affect the test as well.  Any suggestions??

#2 Mmartens3

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Posted 14 May 2013 - 12:57 AM

You can have Narcolepsy without Cataplexy.

Your story sounds a lot like mine. I have had EDS since I was a teenager. back then it was attributed to depression. In the past five years my EDS got worse and I have had all sorts of tests done. My TSH was slightly off so I was dx with hypothyroidism and my EDS was attributed to that. I was on Armour for 3 years. My TSH improved but my EDS did not. Most recently, my doctor attributed my EDS to stress and anxiety. I adjusted some circumstaces in my life to reduce stress. My EDS did not improve. I finally asked for a referal to a sleep specialist. after an evaluation with the sleep doc, he said he thought I had narcolepsy. I was a little suprised but not too much because I had read up on it knew I had some of the symptoms but I didnt think I had it because I dont have cataplexy. I recently had my MSLT and the the dr reviewed it and said I have narcolepsy.

I do have the urge to sleep when I am overwhelmed, anxious, or when I am feeling strong emotions like romantic feelings or nastalgia about something from the past or being embarassed about something. I do not have any reaction to laughter or being startled as with cataplexy.

Sometimes I get anxiety at night and cant sleep. usually this is triggered by caffiene. but sometimes it is triggered by strong feelings like if I have been having a passionate debate about something right before bedtime or if I am reading about something heavy that induces deep thought. i get an increased heart rate. and when I start to fall asleep I wake up with a panicky feeling and gasp for breath. I also get hot and start to sweat.

I also get sleep paralysis and hypnagogic hallucinations sometimes upon sleeping and awaking.

during my PSG I took the sleep aid the doctor left for me. It actually gave me anxiety but I eventually fell asleep anyway. just try to bring whatever you can to make yourself comfortable and whatever helps relieve your anxiety. and many of us on this forum have had to do our sleep studies 2 or 3 times to get an accurate diagnosis simply because we are not in our own homes so we are not going to sleep as well. and if we are already sleeping poorly at home then its not looking good for how how we will sleep in a strange place and a strange bed. well you have already had the PSG so you kind of know what to expect so that will help. ask your dr about what meds you can take. you can take some pain meds. just try to relax and dont try too hard to fall asleep or you will get anxious. just let your body do it the way it naturally does. just close your eyes and think of a song or try to count to 1000. thats what I did.

#3 Hank

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Posted 14 May 2013 - 07:26 AM

Hi, all.  I have decided to post here because I am once again beyond frustrated and tired of not finding any answers.  I have suffered with EDS since I was 13 years old.  I sleep through the night with some awakenings (usually to go to the bathroom), but I do not feel refreshed when I wake up.  I will frequently nap at least once a day.  My naps are usually 2 to 3 hours and I do not feel much better after.  I am now 28 and over the years I have seen several doctors about my condition.  In the past, it was always attributed to anxiety or depression. Later, I became convinced it was my thyroid because I experienced other hypothyroid symptoms (cold intolerance, dry skin, difficulty losing weight, etc).  My doctor did a TSH test, and it turns out that mine was slightly elevated.  I started Armour thyroid, and my cold intolerance improved, but my EDS did not.  My TSH is normal now, and I have since been tested for a plethora of other conditions.  The only abnormality was a low vitamin D level.  That was corrected , but still no relief.

I finally resorted to having a sleep study done.  I tested negative for sleep apnea, but I did have several disturbances in sleep throughout the night, including a good bit of limb movement.  My sleep latency was 1 min and 45 sec.  My doctor gave me a trial of Klonopin to see if it would help me get a better night's sleep. I noticed no difference.  My spouse has never complained about me moving a lot, so I doubt that I have PLMD.  The only thing my spouse has mentioned to me is that I will randomly sit up in my sleep and stay that way for a while.  I also occasionally talk in my sleep and I would sleep walk when I was younger.  I am a light sleeper and I do experience quite a bit of half awake/half asleep moments throughout the night.

Because my PSG was negative, my doctor now wants to test me for narcolepsy.  When he mentioned this, I was baffled.  I never even considered narcolepsy as a possibility.  I still don't feel like I have any symptoms of it other than EDS.  I do get a strong urge to sleep when I am emotionally overwhelmed, but I have always thought this is because it is easier to sleep and block it out than deal with it.  I have no symptoms of cataplexy that I know of.  The only thing remotely close is what I consider panic attacks.  Sometimes when I feel strong anxiety, I get lightheaded and I have to lie down.  This is accompanied by an increased heart rate, muffled hearing, and breaking out into a cold sweat.  

I am just very confused.  Does any of this sound like narcolepsy?  I have scheduled a MLST, but I had to wean off of my Cymbalta first because it can affect REM sleep.  I now have more anxiety, and I'm afraid this will affect the test as well.  Any suggestions??

You sound just like me. I was initially diagnosed with PLMD (which is common in Narcolepsy) and prescribed Klonopin.

 

Klonopin prevented an accurate Diagnosis by suppressing REM and my initial MSLT showed no Sleep Onset REM for that reason. It took a nightmare of 6 months to slowly taper off Klonopin. Please do not use this medication.

 

Untimately, I was diagnosed correctly with Narcolepsy with Cataplexy. The diagnosis was unnecessarily difficult because of Klonopin and the wrong diagnosis.

 

Make sure you have a good doctor- preferably a Neurologist who is fellowship trained in Sleep Medicine (not just Board Certified in Sleep Medicine- a world of difference).

 

You will get there. Just make sure you are being treated competently.



#4 DeathRabbit

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Posted 14 May 2013 - 11:16 AM

@Hank- Benzos are definitely not for everyone, especially if you don't have a problem for which they are prescribed (anxiety, mood swings, neuropathy). Did they not give you vailum to wean you off the klonopin? If so, bad on them. Valium has a much longer half-life (20-100 hours) so if they didn't help you wean with that, your doc seriously messed up. Speaking personally, though, Xanax has helped me a lot, because the acute anxiety the Xyrem treatment left me with would compound my brain-fog into sheer delirium. I have noticed rebound anxiety if I forget to take it; in fact, Xanax can cause a fatal grand-mal seizure if you stop it cold turkey. However, that's usually if you are using beyond a safe-level (IE: using benzos for a party drug)



#5 Hank

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Posted 14 May 2013 - 12:15 PM

DR- oh, live and learn. I went into withdrawal with nothing more than naive optimism. In addition, I was on Adderall and Provigil throughout this period. As I have learned, even coffee is too stimulating during Benzo withdrawal. That was a year ago and pre-diagnosis. It felt like surviving the Blitz on London. Physicians seem painfully unaware of how to get people off these drugs.

Although I had not previously dealt with anxiety or depression- I did during this.

I have had good results with Effexor to manage Cataplexy and it eliminated to D/A. It has a more favorable "exit strategy" than Xanax.

Thanks for your comments- I appreciate it.

#6 Aranson

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Posted 14 May 2013 - 01:05 PM

Thanks, mmartens.  I have never in my life met someone with symptoms like mine.  I was beginning to think i was a hypochondriac.  Or maybe just lazy :/   I am just having such a hard time believing it could be narcolepsy.  Being off my SNRI is not helping with the whirlwind of emotions either.  I keep trying to prepare myself mentally for that stupid test, but I can't help but be anxious.  I feel like it's going to determine the rest of my life.  The PSG was pretty nerve wracking, too, but I managed to get through that, so I suppose there's hope.

 

And Hank, I was only on the Klonopin for 3 nights.  I am a pharmacist, so I'm well aware of the addiction potential, and I wasn't keen on taking it.  When I told my doctor I didn't notice a difference, he opted for an MLST, which is where I'm at now.  I wasn't aware that PLMD was common in narcolepsy.  Is it because of the poor quality of sleep?  Does your body just feel the need to toss and turn all night?



#7 lkl

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Posted 15 May 2013 - 04:37 AM

I think that PLMS, might actually be relatively common in the general population, and not necessarily cause any problems. My first sleep specialist was obsessed with my PLMS, but the second sleep specialist I saw, and my current (3rd) sleep specialist, didn't think they were a problem. The other thing is that most antidepressants, including Cymbalta, can cause/increase PLMS.

 

My sleep specialist told me last week, that there is no evidence, that suppressing PLMS, actually makes people feel better.

This article sort of says that: http://www.neurology...288381481237582



#8 Aranson

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Posted 15 May 2013 - 05:53 PM

I remember reading that most antidepressants could worsen PLMS.  Being off the Cymbalta has not improved my sleep quality or EDS.  If PLMS was the root cause, one would assume my symptoms would improve by discontinuing Cymbalta.  If anything, I feel worse.  I am irritable and more anxious (obvious changes that would accompany cessation), but I also have discovered that I am a lot more achy.  I remember having some neck trouble before starting Cymbalta, but I thought some strengthening exercises alleviated it.  I am now realizing that the Cymbalta may have been covering up all these aches and pains all along.  I can't wait to get this stupid test over with!