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New Here, Questions About Symptoms And Diagnosis


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#1 Mama76

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Posted 10 September 2013 - 08:42 PM

A little background, I am 36 and around when I was 18 my mom was diagnosed with narcolepsy. I had similar sleep patterns as her and i had a sleep study done soon after. I had the naps during the day where I was supposed to stay awake between naps to keep the test accurate. Since I was stuck in the bed with books and tv I did drift off a few times between schedule naps. Doc said I tested positive for N and negative for apnea. Took some meds for a short time but was able to manage fine without them so I stopped taking them and seeing the doc. I always wondered if I could have had a false positive because of dozing between naps.

 

Over the years I have fallen asleep at inappropriate times, meetings, church, etc. Recently I haven't but I do have EDS even after a full night's sleep, which that hasn't been as good lately either. I figure maybe I don't fall asleep because I do have constant distractions in the form of 3 kids and I have to keep an eye on my toddler or if I do try to sleep she will sit on me or poke my eyes. 

 

Recently I decided to look into the struggles I am having. Went through ADHD testing and I am borderline, may or may not have it. I just a couple days ago started ritalin, 20 mg, for that and it seems the oppressive sleepiness in my head has lessened. But I also discussed sleep issues with my doc and he referred me to a sleep center. The lady on the phone said I don't need the daytime nap testing if I don't fall asleep during the day. I still wonder about apnea but can't ignore the testing that came out positive years ago. My husband doesn't want to spend the money on the sleep study right now. Should I make an appointment with the sleep doctor to discuss how likely I am to have an issue?. Hubby even said he would rather spend money on CPAP than testing and just see if it works but I told him it doesn't work that way. Any advice on where I should go to figure out if a sleep test would be worth the money right now? Or if I just need to give the ritalin more time to see if ADHD is my main issue?



#2 IdiopathicHypersomniac

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Posted 11 September 2013 - 02:04 PM

Get a sleep study.  Narcolepsy feels like ADD, not ADHD.



#3 Mama76

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Posted 11 September 2013 - 03:11 PM

Actually I have no hyperactivity symptoms, no-one could ever claim I am hyperactive! Mostly distraction and fogginess, concentration issues, and lack of motivation. Your comment just reassures me I might be on track.



#4 IdiopathicHypersomniac

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Posted 11 September 2013 - 03:45 PM

But if you tested positive for narcolepsy in the past, why would they also diagnose you with ADD?



#5 Mama76

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Posted 11 September 2013 - 07:49 PM

I have ignored my narcolepsy diagnosis because I haven't always felt like I have it, thought the test was flawed, and certainly recent years no sleep attacks, or very few. It has come off my record as I have switched docs several times and haven't seen my sleep doctor for over 15 years. I sort of "forgot" about it and it recently came up at my ADD visit with my family doctor when we discussed ritalin and he suggested getting another sleep study done. Since they weren't positive on the ADD diagnosis he was thinking a non-stimulant would be good because it could be anxiety causing the distraction. I am hesitant to do the sleep study because when I talked to the lady it was $2300 for the overnight one and obviously more for the naps. Plus she said we don't need to do naps if I don't have sleep attacks then I don't have narcolepsy. My deductible still to meet is over $2000 so that is the out of  pocket amount I will need to pay. I am thinking I want to be reasonably sure I will get a positive answer to make the $ worth it. If it is a negative on narcolepsy or apnea it won't be worth the money. And I was hoping that browsing on this forum and creating a post, I could figure out if it could be likely or not. I can't tell if I stop breathing at night, my husband has never noticed, and I don't have the sleep attacks. Really just daytime sleepiness even after a full night's sleep of about 9 hours I can feel like I need to sleep after a couple hours being awake.

 

ETA: I am thinking of seeing if I can get an appointment with the sleep doctor, see what he says about the symptoms I do and do not have, and if it is worth proceeding. And then there is the process of convincing my husband. :(  (I am a SAHM so most financial decisions are his.)



#6 Ferret

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Posted 11 September 2013 - 09:37 PM

I apologize for the rant I'm about to make but REALLY???

You're a stay at home mom and your husband sucks at managing finances. If he was any good at it, he would realize that making an investment of say $3,000 in your health and well being is FAR MORE ECONOMICAL than employing a full time housekeeper, cook, nurse and nanny when you are unable to do it.

Ritalin is a stimulant for those with N.

ADD is fairly descriptive of how PWN feel when not medicated or not having made lifestyle adjustments to compensate.

Stop talking to the "lady" at the sleep centre...she is not qualified to tell you what tests you need to have.

I hope the "sleep Doctor" you are planning on seeing is a qualified one...time to come clean about your family history and previous diagnosis. Wishing it away is like sticking your head in the sand. Does your husband know???



#7 Chemist

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Posted 11 September 2013 - 10:01 PM

You should check with hospitals/healthcare networks located nearby you. Some may have financial assistance programs and if you qualify you may be able to pay less or nothing after insurance coverage. e.g. If you have a $2000 deductible and you have a $5,000 sleep study done, you would probably be responsible for ~$2,300 as billed by the sleep center, then you would get an adjustment typically based on household income to reduce or eliminate what you owe.

 

I had to do this in order to afford my sleep study and ended up not having to pay anything out of pocket. It's definitely worth the hassle.



#8 IdiopathicHypersomniac

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Posted 11 September 2013 - 10:47 PM

I'm glad I live in Canada.  A sleep study here is only $500 when it's not covered by OHIP.



#9 ironhands

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Posted 11 September 2013 - 11:42 PM

Doubly so; I wouldn't even be able to pay for one out of pocket here at $500, almost had to since they burned my PSG by not doing the MSLT after.  Any idea what the cost of the generic modafinil is per month for us?



#10 IdiopathicHypersomniac

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Posted 12 September 2013 - 12:19 AM

$1.28 per pill.



#11 Mama76

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Posted 12 September 2013 - 07:34 AM

Ferret, I do think that is unreasonable considering you don't really know anything about our finances. We are comfortable, a family of 5 with kids in private school, on my husband's salary. But right now we are faced with many big expenses and we are forced to prioritize. I hit a concrete wall in my van, $500 deductible, and it damaged van structure so it is a safety issue, not just cosmetic. We have a tree that we fear falling on our house that will cost $5000 to cut down. I am terrified of getting pregnant again and awaiting him getting a vasectomy, another $2000. Right now it is a toss up between weather a sleep study or vasectomy is my priority, I can't take estrogen ever and hate birth control in general.

 

On top of all of that, I think he is starting to think I am just grasping at straws to find excuses of why I am a poor housekeeper. I don't feel that whatever is wrong with me is much of a safety issue most days, I don't have sleep attacks. Just generally too unfocused to do jobs around that house that need done. Everywhere I read, the main symptom of narcolepsy is sleep attacks. I don't have major symptoms that we can't live with, I am just "lazy". In fact, even though I am lazy during the day, I often stay up late at night (11:00 or 12:00) instead of going to sleep when the kids do because I am typically a night person and I need awake time without kids around to relax. As for my husband, after hearing for years that something is wrong, don't know why I have trouble with this, dealing with a phobia I have, wondering if I might have ADD after learning more about it with my son's diagnosis, I wonder if he thinks I am a bit of a hypochondriac and is hesitant to spend more money. We have a good relationship but he isn't always understanding, and this is something he doesn't understand. Truthfully I don't really understand it either and don't know if I will get any answers.

 

And as I said above, I have blown off the old N diagnosis as flawed and probably wrong because I don't get sleep attacks, have done OK for years without meds, while my mom still falls asleep during conversations even on meds. So my main question here was not if my husband was being unreasonable, if I have enough info to show that it is a possibility we will discuss it more, but weather or not it is even a possibility since I thought N was more severe symptoms. I kind of feel like I am grasping at straws here to, to find an answer to my "laziness" when maybe if I just try harder still. And who wouldn't be tired with three kids (9 & 7 & 18 months) one of them a toddler?!?!

 

And thank you Chemist, I will look into that if we proceed. I will go ahead and schedule an appointment with the sleep doctor if I can.



#12 Ferret

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Posted 12 September 2013 - 08:03 AM

As I said in the first line of my post "I apologize" but I presented my view based on the information that you gave. Chemist's advice is a possibility for you and worth looking into.
N doesn't go away, tests don't lie and you already received a diagnosis based on those tests. N also varies in severity from person to person and can become more disabling with time...but not necessarily. You have said nothing about your mother's progression so I will keep silent.
I don't think you're lazy and you certainly have your hands full. But...have you always been "a poor housekeeper" (your words)or is it something that is developing? You also stated that you want to nap but your toddler prevents you from doing so...that IMHO is a sleep attack that is disrupted.
I didn't take medication for 25 years but I made lifestyle changes and maintained a rigid sleep and nap schedule to compensate. I have N with C.

#13 Mama76

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Posted 12 September 2013 - 08:36 AM

Thanks, it is hard to know what is going on in people's lives based on small info. I am just coming to terms that I might actually have this after denying it for years, so it is difficult, I have enough labels, KWIM? Especially with a bit of a strange phobia. And it is always in the back of my mind "if I just try harder". I think I have adapted my lifestyle, I have to plan to the "T" to manage mornings and school, I believe I have come up with coping strategies through the years. And it seems there are few books that tell of personal experiences to be able to say, "yes, that is how I feel!" (Although I am borrowing one called Wide Awake and Dreaming on my kindle, but I don't have cataplexy or hallucinations that I am aware of.) And I didn't know sleep attacks could be interrupted, I thought it was falling asleep accidentally, not an overwhelming feeling of having to nap right now even if you aren't able to. I think most things you read describe the more severe picture. I think I am just overwhelmed and emotional today, and tired, just want to sit on the couch and read but have to eventually face the things I am not doing that I should be doing. Thanks again, I will look into talking to the sleep doctor. :)



#14 exanimo

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Posted 13 September 2013 - 01:50 AM

Sleep attacks are hard to describe. They are most definitely not "falling asleep at the drop of a hat" with no warning (as the media so often portrays: this portrayal is actually closer to cataplexy.)

Our bodies go through cycles - during sleep, the average person hits REM about 90 minutes after falling asleep and will continue to cycle the sleep stages - reaching REM about every two hours. Those of us PWNs, experience this during the day (due to the lack of a neurotransmiter known as Orexin/hypocretin.)

Sleep attacks are essentially REM intruding into wakefulness. During this time, we may experience excessive daytime sleepiness, memory lapses, automatic behavior, slurred speech, microsleeps, trouble concentrating, and even trouble with fine motor skills. These episodes of REM intrusion may last up to 30 minutes, but can be less. Often we come out of them, suddenly alert and completely awake. It's a cycle that generally repeats throughout the day and may be more noticeable or of greater prevalence during times of inactivity - such as meetings, driving or while watching tv. Activities like active learning, physical activity or being engaged in a new activity are less likely to show strong episodes of REM intrusion (aka sleep attacks.)

Oddly enough, many PWNs I've met are night people- including myself. I just work better after 8 pm! And we also have fragmented sleep - meaning we might awaken multiple times during the night. This is simply due to the fact that our sleep cycles are not normal and do not cycle through in the proper order, nor do we experience the proper amount of time in any of them.

I hope that you can find something that works for you. From what you have said, it does sound quite possible that you have N. it is unlikely that the test you received years ago was false. Just the fact that you fell asleep during the day - in between the naps, is highly unusual and very indicative of narcolepsy (or another disorder where EDS is present).

I will leave you with this link;
http://www.stanford....t/epworth.html

The Epsworth sleepiness scale is a great resource, both for communicating how tired you are and for understanding what that might mean.

Please keep us informed, and I hope that whatever happens, you find peace with it!!

#15 Mama76

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Posted 14 September 2013 - 08:40 AM

Thanks to you all, you have given me a lot to think about. :)



#16 hbananas

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Posted 14 September 2013 - 11:07 AM

Wow.  Exanimo, your description is what I am experiencing.  I love the phrase about REM intruding into wakefulness.  It's like I have daydreams that turn into dreams without warning.  Thank you.