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#221 CopingWithASideOSleepiness

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Posted 04 October 2013 - 07:51 AM

Hello!

 

I'm Erica... and I'm currently awaiting a diagnosis which my sleep specialist believes will be narcolepsy. I'm anxiously awaiting the facility to call me to schedule my sleep study and MSLT. 

 

I'm 25 and I have a 4 year old daughter, a partner that I live with, and a 6 year old (almost) step-daughter. We have a big black lab, 3 black and white cats, a ball python, an ant farm, and a container full of land snails. I live in a zoo, LOL!

 

I'm scared right now. I've never been so exhausted in my entire life (even though I've lived life always tired). 

 

However, I'm trying to cope. I'm at home with the youngest all day, work as a receptionist in a nursing home in the evenings, and will be starting to get my prerequisites for nursing school this winter. I'm hoping to start nursing school next year. 

 

Sooo, that's a little about me. 



#222 EpiSleeper

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Posted 25 October 2013 - 07:53 AM

Hello all,

 

I'm Roxanne, and am one of those odd outliers: diagnosed with narcolepsy (no C yet, thankfully) 18 months ago, just after I turned 54. I started falling asleep during meals, at movies, etc., and went in for a sleep study. Did the standard overnight, but then stayed for a SLT and BOOM! Slept thru all the nap cycles, and hit REM in under 2 minues on 3 nap cycles  Did the SLT on a Friday and it took me until Monday morning before I felt fully awake.  

 

The diagnosis was a total shock - both my parents have sleep apnea, so I figured it was something like that.  After talking to my sleep MD, it's now clear that I've had narcolepsy since my teens: couldn't stay awake during lectures, no matter how interesting it was, falling asleep in the middle of parties, sitting at my desk at work not remembering driving in, etc..  Recently I've been having problems with mental focus and memory, and was concerned that it was early-onset Alzheimer's (my grandmother died from complications of Alzheimers that developed in her late 80's - silly but when your thinking gets fuzzy you believe ridiculous things). Diagnosis of narcolepsy was actually kind of a relief.

FWIW I'm a research scientist, and both narcolepsy and modafinil (currently 500 mg/day, probably going up to 600 in the next month) have made my work life horribly difficult - I can't think as well as I used to, and my co-workers don't really understand just how hard it is from day to day.  I'm also working on my PhD, and have had to cut back from full-time work + school to 75% time work + school simply because I can't keep up.  It's also been hard on relationships, so I've been looking for a group like this for coping strategies and just plain ol' support (I was also widowed at 42 (my 36 year old husband died in my arms of a pulmonary embolism), and the YWBB was so very helpful for me dealing with acute grief).



#223 ljmish21

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Posted 27 February 2014 - 07:52 PM

Hello All.  I am a PWN.  No cataplexy.  I was diagnosed about 12 years ago.  Have had trouble sleeping all my life.  I am 67 years old and would love to meet others my age.  

 

I am ALSO in Ohio, NE Ohio, and would like to have a monthly group here if possible

 

Cheers!



#224 Lousyskater

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Posted 28 February 2014 - 06:37 PM

Oh hey, this thread is here.

 

I'm Devin and I've just now gotten a MSLT scheduled for the middle of March. Sleep Specialist suspected Sleep Apnea after my initial Sleep Study, but after various CPAP's making my symptoms worse he suspects Narcolepsy as during the Sleep Study I immediately went into REM sleep at both stages of the study and the symptoms I describe are similar to Narcolepsy. I'm still investigating myself and digging out all the problems I've had within the last 6 years that Narcolepsy could be responsible for and realizing a lot of what I've experienced that I thought was normal to some extent in fact isn't at all for normal people.

 

I turn 28 in May, currently work as a Wind Turbine Technician fixing broken wind turbines for the past 2 years. As you can imagine being exhausted all the time is making climbing these 280 foot tall behemoths on a daily basis a challenge. Prior to this I served 4 years in the United States Navy as a Tomahawk Missile Technician.



#225 SillyBrain

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Posted 23 March 2014 - 08:50 PM

Hello, I'm Joel.

 

I was diagnosed with Narcolepsy in August of 2013, though after talking with the doctor and reading up on Narcolepsy, I've been coping with it since I was a child.

 

All of the symptoms I've been enjoying over the years are:

Sleep Paralysis

Wild Dreams

HH

Mild Cataplexy (Laughing and sudden intense emotion tend to disable my capability of speaking and I usually end up having to sit down quickly)

EDS

Various other sleep disturbances

 

My Narcolepsy seemed to get worse at specific points in my life. Around the ages of 14 and 22 are when I saw the most progression of symptoms.

 

After working through EVERY side-effect that Nuvigil has to offer, I now somewhat function normally if I can stay in a regular exercise and sleep routine and monitor my diet. I've found that 5-HTP is actually helpful with sleeping, before bed or naps. Sometimes after taking it I actually have noticed that I feel somewhat rested, like I might have actually gotten some good sleep at some point lol. 5-HTP also helped to reduce the "Emotional Impact' and intensity of my dreams.

 

Enjoy the book I've written here and I look forward to future conversations.



#226 Madough

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Posted 10 April 2014 - 12:18 PM

Hey all I'm Marsha,

 

I was diagnosed in October 2013 after my sleep study.  It did take almost a year for the diagnosis, it seems that I started with the symptoms after I had the flu shot in November 2012.  I couldn't get out of bed, stay awake at work and I drive alot for my job, no concentration, memory, and cataplexy where I just freeze for no reason.  I can hear you but I can not move.  I hope to meet people on here like me for understanding and support.  Currently I am on LOA from work due to N, and not sure what my next steps are to maintaining my job.  I look forward to many conversations :)



#227 Celestia

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Posted 13 April 2014 - 04:21 PM

Hello all!
 

I actually came here for some advice so I am sure many of you will see me around but for now, an introduction seems like a great place to start. My name is Celestia, I am 18 years old from New York. I was diagnosed a little over a year ago after having narcolepsy induced mild seizures. My symptoms are very moderate so I have opted for no medications until symptoms worsen to the point of me not being able to handle it. During the time of my diagnosis it kind of took the back burner due to other worse medical conditions. But now it is back for vengence so I am here! Hah. Awkwardly enough, my cataplexy is yawning. Which is very funny yet awful at the same time because a lot of people think it is rude. My highest yawn-count to date is approximately 134 in a hour. It has become a game for myself and my boyfriend.

On the homefront I have a boyfriend whom I have been with for almost two years that is literally clueless and does not grasp the concept but still tries. I also have two lovely pooches that love staying up all night with their momma. ;) We have recently begun a house-hunt and hope that things will continue to look up for the future. I think everyone has good days and everyone has bad days but as long as you try your best to make the bad into good then life will go a helluva lot smoother. I look forward to talking with everyone to learn a little more about the condition and everything that accompanies it.



#228 Hank

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Posted 13 April 2014 - 06:25 PM

What are narcolepsy induced seizures? And I do not understand how your cataplexy is yawning. Could you please explain.

#229 Lousyskater

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Posted 13 April 2014 - 10:26 PM

Yeah I'm interested in that too.



#230 Celestia

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Posted 14 April 2014 - 12:46 AM

What are narcolepsy induced seizures? And I do not understand how your cataplexy is yawning. Could you please explain.

 

Yeah I'm interested in that too.

 

Hello!

Since I do not hit the proper sleep cycles my body does not shut down properly. This extreme lack of sleep causes me to have mild seizures. While I am concious and controllable, my body just convulses, heart rate spikes, and I usually got a pretty nasty fever. While it is not a direct symptom it is induced by a narcolepsy attack.

The cataplexy is the standard weakness and lack of muscle control but it also causes me to yawn uncontrollably. Therefore my neurologist told me that it was part of my cataplexy and there was nothing that could be done. My neurologist also was a bit confused at first and actually caused a specialist in the area to see if it was related. At our last visit he actually told me to record it and we reviewed the video.The specialist said that it was a first for him but it was definitely related. He advised that I bulk it as the cataplexy so when explaining it to employers and professors I do not just seem rude and bored with life when I cannot stop yawning.

 

Hopefully that all makes sense! I was put off by both as well. They were certainly not the standards of narcolepsy that I had read about online.



#231 Hank

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Posted 14 April 2014 - 06:14 AM

From what you are describing, I am concerned about your medical team.

 

Do I understand correctly that you are also diagnosed with Epilepsy or a seizure disorder?

 

I would suggest that you make an appointment with a Sleep Medicine Specialist who is part of an group practice or University. If you are a "one of a kind" patient, you need to be very selective about who gets to diagnose you.

 

I am not doubting that you are truthful about what you were told. However, what you were told does not make sense to me and sounds sketchy. I experienced the "I've never seen this" before myself. It was reassuring to find a doctor who had seen it before and knew exactly what it was.

 

The "first for him" is a red flag to me. What were the qualifications of that Specialist you saw. Also, do you still have that video and would you be comfortable posting it?



#232 Celestia

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Posted 14 April 2014 - 11:57 PM

From what you are describing, I am concerned about your medical team.

 

Do I understand correctly that you are also diagnosed with Epilepsy or a seizure disorder?

 

I would suggest that you make an appointment with a Sleep Medicine Specialist who is part of an group practice or University. If you are a "one of a kind" patient, you need to be very selective about who gets to diagnose you.

 

I am not doubting that you are truthful about what you were told. However, what you were told does not make sense to me and sounds sketchy. I experienced the "I've never seen this" before myself. It was reassuring to find a doctor who had seen it before and knew exactly what it was.

 

The "first for him" is a red flag to me. What were the qualifications of that Specialist you saw. Also, do you still have that video and would you be comfortable posting it?

 

 

My first mild seizure caused me to be taken by ambulance and they brought in our local neurologist. I live in a small-ish suburb but everyone seemed to recommend him. I was given an epillepsy test and he said I did not have epillepsy or any seizure disorder. He told me that they were more than likely due to lack of sleep which is fairly common. He then set me up with a sleep test which he sent the results to a sleep specialist. I was "100%" diagnosed with Narcolepsy less than two days later by the specialist. Myself and the specailist did not speak a lot because, to be honest, I did not hear what I wanted to. I have other medical conditions that cause my organs to shut down so I was hoping that the Narcolepsy/lack of sleep in general was what was causing my organs to function improperly or cause them to not function at all for periods of time. He told me that this was not the case and could not be. At the time, my narcolepsy was just a medical "thing" to me that caused me to be sleepy so I did not want treatment for it until it worsened. I have not spoken to him since. I went to the ER for my recent "attack" because I had on-going pain on the right side of my head but the ER doctor sent me home and called it syncope because he was not educated on the matter. I am calling my neurologist tomorrow since the pain is still there to see if it is a narcolepsy thing or what. I do not have the video anymore, but I will record it the next time that it happens and post it.

I do not know if I was misdiagnosed but the sleep facility staff and the neurologist both said prior to the specialist that something was going on and it was not apnea hah. That is why I joined the forums. To hear of other people's general attacks and diagnosis and everything else to get an idea of if this is what is going on with me because I did not speak much with the specialist. I am concerned about the "attacks" that I have been having and wondering if I do need to see another doctor or if I need to just go speak to my sleep specialist for the supposed narcolepsy.

I too am a very "I've never seen this before" case with a lot of my local doctors. I have dealt with well over a dozen doctors within a 50 mile radius that have not been able to diagnose my other issues and will soon be going to Cleavland Clinic to try to find a definitive diagnosis for the organ issues. I am actually moving to a nearby large city in about four months to gain access to better medical teams and hospitals. I am planning on starting fresh and letting some new minds into the mix to see if they can figure ALL of it out. Maybe it is all related, I have no idea.



#233 Lousyskater

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Posted 15 April 2014 - 12:26 AM

Did you just do the overnight PSG and not the MSLT? It seems a little odd to get "100% diagnosed" based on that alone.



#234 Celestia

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Posted 15 April 2014 - 03:48 AM

Did you just do the overnight PSG and not the MSLT? It seems a little odd to get "100% diagnosed" based on that alone.

 

I went for both. :) I probably should have mentioned that. My apologies.



#235 Hank

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Posted 15 April 2014 - 05:41 AM

Narcolepsy does not cause pain. If you are having pain, it is for a different reason.

 

It sounds to me like you have a general misunderstanding of what you are experiencing and why. This was very difficult for me when I was at that point. I did not know what was happening to my body and my mind.

 

This is a good place to ask questions, learn from others who live with this and make sense of your experience.

 

I am glad to hear that you are pursuing better medical care. Can you set an appointment with the specialist who diagnosed you? It sounds like a game of "telephone" between him, your neurologist and you. It sounds like a lot is getting lost along the way.



#236 Celestia

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Posted 15 April 2014 - 07:04 AM

Narcolepsy does not cause pain. If you are having pain, it is for a different reason.

 

It sounds to me like you have a general misunderstanding of what you are experiencing and why. This was very difficult for me when I was at that point. I did not know what was happening to my body and my mind.

 

This is a good place to ask questions, learn from others who live with this and make sense of your experience.

 

I am glad to hear that you are pursuing better medical care. Can you set an appointment with the specialist who diagnosed you? It sounds like a game of "telephone" between him, your neurologist and you. It sounds like a lot is getting lost along the way.

 

I do not have pain associated with the supposed narcolepsy usually. I know that the pain is seperate chronic issues that are dealt with individually. I was just told that this past event sounded like my first real narcoleptic attack so I was unfamiliar with the symptoms. I did not know that the head pain was not normal. That is why I ended up going to the ER but the doctor was a doof who didn't bother to help anyways. What can ya do? <_<  It will forever be a mystery now, hah.

Thank you for your concern and curiousity. I am going to wait until I get into the area to schedule an appointment. I want to check out the facility, read some reviews, and really get 'into' the new specialist before choosing, for lack of a better term. I do not want a repeat of last time where if there is not an issue then we are not in contact. It is difficult to find a specialist that manages to focus on just one thing without becoming curious about all the other medical issues. Hopefully a bigger city will allow me to do that. I am still young - I have time to get a few opinions and find a forever doctor. :)



#237 dragonflybug

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Posted 15 April 2014 - 03:38 PM

Hello, I'm Jennifer and I'm 37 years old. I was diagnosed with N w/ C on 1/2/2014. I'm still trying to understand, even though the diagnosis itself makes complete sense of what I have been dealing with for many years. I also have chronic pain and have an amazing pain management doctor.

My sleep doctor is a different story. We're still trying to get the meds to work properly... but it's extremely difficult when you have a dr that won't "listen" to you and no one to really talk to that actually understands. My husband tries, but it's very hard on him and the kids.

#238 toren

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Posted 02 May 2014 - 08:33 AM

Glad to find this site. 44year old woman married small business owner and mom. Symptoms the last four years have become increasingly worse and finally saw a neurologist two weeks ago. Since then I have been devouring everything ni can find and though initially I was elated to be told I am not the lazy clumsy anxious mess I had told myself, the more I learn the more I put the personal pieces together and realize how very badly this has been affecting my personal and professional life. Learned last night from husband that I must be having a lot of auto behavior at might with him as I have acted very rudely with absolutely no memory of it. I was convinced he neglected to tell me things like obligations or plans and accuse him when it was me all along. At work I have told my staff more than once that they never told me something. Excuses I told myself
You are overworked, anxious, dehydrated overtired don't have an understanding partner, nightmares and sleep paralysis are just normal. Everyone has to crash they teat too much, consuming ten diet sodas and a coffee a day is my normal while avoiding anything other than bits of chicolate at work. I am just a night owl, I am a rotten mum for napping rather than bikjng with my son even when he begs. What kind of mother can't drag herself up to play with her son when she slept 9 hours the night before? doesn't everybody dream all night long I have a very creative mind I can't be bothered with small things like my keys or even more than once wearing two different shoes to work, knocking everything over by accident, sneakily setting phone alarm for ten minutes at work because i am so slerpyetcetera etcetera etcetera. I guess it will take awhile for the guilt and fear if deterioration to pass. Can't thank all of you in these boards enough as reading like symptoms and stories as well as the optimism and humor have helped more than u build possibly put into words.

#239 Hank

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Posted 02 May 2014 - 10:50 AM

Maybe you just need a multi-vitamin........... (just kidding)



#240 Lorax64

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Posted 02 May 2014 - 12:26 PM

Maybe you just need a multi-vitamin........... (just kidding)

 

Ok, just spit out my drink laughing! Yep, that multivitamin will fix everything! Ah, that laugh felt good. 

 

Toren, so glad you are here, and trying to get the help you need. I can completely read the frustration in your last post. (hug) This is a great board. While I'm one of few who do not have narcolepsy, my son does and I have to admit that I've heard some of the same type of comments. The tone sometimes is that if I were a better mother then I would do XYZ and he wouldn't have the problems he does. Yeah, thanks a lot.  <_<