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If Not Narcolepsy, Then What?


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#1 seventhdwarf

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Posted 28 August 2012 - 02:17 PM

I'll try to make my long story as short as possible.... When I was a sophmore in HS, that's when alot of my sleepy problems started (falling asleep in class, napping after school etc.). The Dr.'s said I had Hypoglycemia (low blood sugar--kind of like diabeties, just not as bad). Fast forward 7 years when another Dr. tells me my blood sugar is fine, I never had hypoglycemia, I have depression and have had depression for the past 7 years. Wonderful. So they give me meds, we try new meds, etc. Meanwhile, my sleepy problem is still on the back burner and slowly getting worse until it just can't be ignored anymore. So my Dr. FINALLY sends me to sleep Dr. back in 2007. I go through the whole sleep test. Night and day test. I go in to get the results and he says I don't have apnea (thank god--I didn't want to have to wear one of those masks), but I did have alot of limb movements. So he sends me on my way with meds for RLS and calls it a day. A month later I go back and say I've noticed no change, and we do this song and dance 2 more times before he finally is ready to say I have narcolepsy. I'm willing to accept this. I have a name, I can research this and find ways to cope with this...Fast forward to yesterday when I meet with the director of the sleep program at the same clinic where I originally got diagnosed. He tells me that he looked over my results from 2007 and I DON'T have narcolepsy. At least I didn't when that test was done.... So I'm wondering, does anyone have any suggestions as to what shows pretty much alot of the same signs of narcolepsy, but is something else? I'm currently on Adderall, but if I don't take it I will sleep 17-20 hrs. a day. Even if I do take it, I have to take a nap pretty much every day in order to make it through the day. My memory and concentration have deteriorated. Earlier this year I've started to show mild signs of cataplexy.......I'm so frustrated. I've had to decrease my hours at work because of how tired I get, I don't cook or clean at home as much as I once did.....I've been dealing with this for 25 years (which is well over half my life), and I just can't seem to get an answer as to what is wrong with me, and am I going to sleep the next 25 years of my life away too? Any suggestions?

#2 Hank

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Posted 28 August 2012 - 09:44 PM

I'll try to make my long story as short as possible.... When I was a sophmore in HS, that's when alot of my sleepy problems started (falling asleep in class, napping after school etc.). The Dr.'s said I had Hypoglycemia (low blood sugar--kind of like diabeties, just not as bad). Fast forward 7 years when another Dr. tells me my blood sugar is fine, I never had hypoglycemia, I have depression and have had depression for the past 7 years. Wonderful. So they give me meds, we try new meds, etc. Meanwhile, my sleepy problem is still on the back burner and slowly getting worse until it just can't be ignored anymore. So my Dr. FINALLY sends me to sleep Dr. back in 2007. I go through the whole sleep test. Night and day test. I go in to get the results and he says I don't have apnea (thank god--I didn't want to have to wear one of those masks), but I did have alot of limb movements. So he sends me on my way with meds for RLS and calls it a day. A month later I go back and say I've noticed no change, and we do this song and dance 2 more times before he finally is ready to say I have narcolepsy. I'm willing to accept this. I have a name, I can research this and find ways to cope with this...Fast forward to yesterday when I meet with the director of the sleep program at the same clinic where I originally got diagnosed. He tells me that he looked over my results from 2007 and I DON'T have narcolepsy. At least I didn't when that test was done.... So I'm wondering, does anyone have any suggestions as to what shows pretty much alot of the same signs of narcolepsy, but is something else? I'm currently on Adderall, but if I don't take it I will sleep 17-20 hrs. a day. Even if I do take it, I have to take a nap pretty much every day in order to make it through the day. My memory and concentration have deteriorated. Earlier this year I've started to show mild signs of cataplexy.......I'm so frustrated. I've had to decrease my hours at work because of how tired I get, I don't cook or clean at home as much as I once did.....I've been dealing with this for 25 years (which is well over half my life), and I just can't seem to get an answer as to what is wrong with me, and am I going to sleep the next 25 years of my life away too? Any suggestions?

It is unfortunate that so many of us have gone through diagnoses, tests, and medications- there are less expensive hobbies and this is surely no fun. Limb movements were the most noticeable aspect of my fisrt sleep study, which resulted in a diagnosis on PLMD and a several year prescription for Klonopin. If you were put on that also, consider other options since it disrupts sleep architecture and invalidates future sleep studies. My new sleep doc told me that PLMs are a symptom, not a diagnosis. And, while all people with RLS have PLMs, not all people with PLMs have RLS. PLMs are commen for Narcolepsy. For my second sleep study, the PLMs were still so present, the obscured the results but waking me up so often. The third study I was on neurontin for PLMs and my study was valid and showed 2 SOREM. By then I had learned more about the quirks and variety of Cataplexy- which I had always thought were normal. I needed to be a strong advocate for myself and educate myself- and push for a plan rather than a best educated guess. Without something that stands out clearly, doctors will look for the most likely cause - and N is not so common. Try documenting your chief complaints/symptoms using accurate words like "sleepy" which is different than tired. If you have experienced mild signs of Cataplexy, describe the emotion preceeding C and how it effected you- on one side or both. Keep a notebook or something to give the docs some solid examples. The more info you give them, they more the have to work with. I hope somr of this proves helpful. I was too much like a passenger early on- and I did not push enough for answers- or even know the right questions/terms. I have evolved since then.

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#3 Hank

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Posted 28 August 2012 - 09:44 PM

I'll try to make my long story as short as possible.... When I was a sophmore in HS, that's when alot of my sleepy problems started (falling asleep in class, napping after school etc.). The Dr.'s said I had Hypoglycemia (low blood sugar--kind of like diabeties, just not as bad). Fast forward 7 years when another Dr. tells me my blood sugar is fine, I never had hypoglycemia, I have depression and have had depression for the past 7 years. Wonderful. So they give me meds, we try new meds, etc. Meanwhile, my sleepy problem is still on the back burner and slowly getting worse until it just can't be ignored anymore. So my Dr. FINALLY sends me to sleep Dr. back in 2007. I go through the whole sleep test. Night and day test. I go in to get the results and he says I don't have apnea (thank god--I didn't want to have to wear one of those masks), but I did have alot of limb movements. So he sends me on my way with meds for RLS and calls it a day. A month later I go back and say I've noticed no change, and we do this song and dance 2 more times before he finally is ready to say I have narcolepsy. I'm willing to accept this. I have a name, I can research this and find ways to cope with this...Fast forward to yesterday when I meet with the director of the sleep program at the same clinic where I originally got diagnosed. He tells me that he looked over my results from 2007 and I DON'T have narcolepsy. At least I didn't when that test was done.... So I'm wondering, does anyone have any suggestions as to what shows pretty much alot of the same signs of narcolepsy, but is something else? I'm currently on Adderall, but if I don't take it I will sleep 17-20 hrs. a day. Even if I do take it, I have to take a nap pretty much every day in order to make it through the day. My memory and concentration have deteriorated. Earlier this year I've started to show mild signs of cataplexy.......I'm so frustrated. I've had to decrease my hours at work because of how tired I get, I don't cook or clean at home as much as I once did.....I've been dealing with this for 25 years (which is well over half my life), and I just can't seem to get an answer as to what is wrong with me, and am I going to sleep the next 25 years of my life away too? Any suggestions?

It is unfortunate that so many of us have gone through diagnoses, tests, and medications- there are less expensive hobbies and this is surely no fun. Limb movements were the most noticeable aspect of my fisrt sleep study, which resulted in a diagnosis on PLMD and a several year prescription for Klonopin. If you were put on that also, consider other options since it disrupts sleep architecture and invalidates future sleep studies. My new sleep doc told me that PLMs are a symptom, not a diagnosis. And, while all people with RLS have PLMs, not all people with PLMs have RLS. PLMs are common for Narcolepsy. For my second sleep study, the PLMs were still so present, they obscured the results but waking me up so often and then Klonopin supressed REM for MSLT showed no SOREM. The third study I was on neurontin for PLMs, no klonopin - my study was valid and showed 2 SOREM. By then I had learned more about the quirks and variety of Cataplexy- which I had always thought were normal. I needed to be a strong advocate for myself and educate myself- and push for a plan rather than a best educated guess. Without something that stands out clearly, doctors will look for the most likely cause - and N is not so common. Try documenting your chief complaints/symptoms using accurate words like "sleepy" which is different than tired. If you have experienced mild signs of Cataplexy, describe the emotion preceeding C and how it effected you- on one side or both. Keep a notebook or something to give the docs some solid examples. The more info you give them, they more the have to work with. I hope somr of this proves helpful. I was too much like a passenger early on- and I did not push enough for answers- or even know the right questions/terms. I have evolved since then.

-

#4 thecatnapper

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Posted 30 August 2012 - 03:26 PM

You must have gone to the same lab I did because the sleep lab guy sounds just like the one I had for my MSLT :lol: He basically said "I can't really tell you what the study showed but you slept nearly perfectly" and he said it in a there's nothing wrong with you sort of way so I was all worried that the test wasn't accurate. 10 days later the neurologist said even though the test was more suspicious for Idiopathic Hypersomnia that he was confident diagnosing Narc with Cataplexy. So try not to worry too much about what that guy said, unless he is a sleep specialist. If he is and you don't agree then you can always get a second opinion. It stinks that so many people have to fight so hard for the correct diagnosis and treatments that they need, not only for this but other "mystery illnesses" as well. Hang in there!

#5 seventhdwarf

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Posted 30 August 2012 - 05:33 PM

Thanks to those that have responded so far. And yes, Catnapper, I have had 2 actual sleep specialists say I don't have "N" and 1 sleep specialist says I do. Hopefully 3rd times a charm when it comes to sleep tests too. I go in the end of September for the 3rd (and hopefully final) time. This time though, 2 weeks prior they fit me with a bracelet type device that will record alot of wake and sleep time while I'm at home. Apparantly this in new within the last few years. I'm just hoping to get some answers, and maybe start enjoying life a little. I haven't done that in quite a few years.

#6 drago

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Posted 31 August 2012 - 04:45 AM

Night and day test. I go in to get the results and he says I don't have apnea (thank god--I didn't want to have to wear one of those masks), but I did have alot of limb movements. So he sends me on my way with meds for RLS and calls it a day. A month later I go back and say I've noticed no change, and we do this song and dance 2 more times before he finally is ready to say I have narcolepsy. I'm willing to accept this. I have a name, I can research this and find ways to cope with this...Fast forward to yesterday when I meet with the director of the sleep program at the same clinic where I originally got diagnosed. He tells me that he looked over my results from 2007 and I DON'T have narcolepsy. At least I didn't when that test was done.... So I'm wondering, does anyone have any suggestions as to what shows pretty much alot of the same signs of narcolepsy, but is something else? I'm currently on Adderall, but if I don't take it I will sleep 17-20 hrs. a day. Even if I do take it, I have to take a nap pretty much every day in order to make it through the day. My memory and concentration have deteriorated. Earlier this year I've started to show mild signs of cataplexy.......I'm so frustrated. I've had to decrease my hours at work because of how tired I get, I don't cook or clean at home as much as I once did.....I've been dealing with this for 25 years (which is well over half my life), and I just can't seem to get an answer as to what is wrong with me, and am I going to sleep the next 25 years of my life away too? Any suggestions?


OK, so here's the thing: doctors are wrong all the time. And many doctors have selective (or "corrective") hearing -- they hear what they THINK you say. Or they forget you said something. Sometimes you have to repeat yourself. A lot.

Now of days, I actually write everything down. I type it up and print it out and bring it to the doctor with me. Here's why:

My earliest memory, around age 2, is of me having sleep paralysis. I ran to my mom and tried to tell her I got "stuck." Because, being 2, I didn't have the word "paralyzed" in my vocabulary. Never in all my years - with all my nightmares and trouble sleeping and difficulty with waking up in the morning - never did a single person in my life even SUGGEST I had a sleeping disorder. When I was a kid, they blamed the sleeping trouble on the fact that I snuck out of bed to watch late night TV with my dad. (The old Twilight Zone, Star Trek, and other reruns like the X-files and stuff.) According to everyone, I had trouble sleeping because I watched scary stuff and had nightmares, NOT because I actually had a sleeping disorder. Even as I was ten and eleven, I had sleep trouble, and everyone wanted to blame my love of scifi as a child... but in reality it was the sleep paralysis. I discovered "sleep paralysis" as a term when I was 15. It had never occurred to me before that there was a NAME for my problem - that it was something that other people experienced. And, never did my relatives or friends ever suggest I go to a doctor about it. Because -- at least it seems to me -- people see sleeping problems as bad behavior, emotional problems, etc.

The thing is, at age 15, I told my GP doctor about it. I said, "I've had sleep paralysis for as long as I can remember." He did not suggest a sleep study, nor did he ask me about other sleeping problems or fatigue during the day. He seemed to think it solely stress related, which would have been cool. What would have been cooler would be if he had alerted me to the possibility of narcolepsy, or that SP could be related to ANYTHING ELSE other than "stress."

Also, I did an overnight sleep test when I was 22. I had something like 90% + sleep efficiency, or whatever the measurement is, at night. Partially this is because, since I realized I had sleep paralysis problems, I had developed strong sleep hygiene. However, my MSLT (the daytime nap test, or the test from hell as I dub it) showed my narcolepsy pretty well. My REM onset average was 8 minutes (they want it to be 5, but combined with my other symptoms, the diagnosis fit). So just because the overnight test doesn't show anything doesn't mean you can rule out narcolepsy.

I recommend that you write down all the symptoms you have, narcolepsy-related or otherwise, before your next appointment. Write them down and bring a copy in to your doctor. If you have sleep paralysis, write down how often. If you have EDS, write down how often and how bad, etc. Do you have automatic behavior? Do you have (or have you had) sleep attacks? Do you have insomnia? (Oddly I have insomnia from time to time - not really a "symptom" of narcolepsy but many narcoleptics experience insomnia.) Write all this down and take it to the doctor with you -- even make a copy for the doctor. And don't let them say they don't know. Ask them, "What could it be, if not narcolepsy?" Hypothyroid? Hypoglycemia? Whatever they say, ask them, "What are the symptoms for that?" Because a lot of my early symptoms were written off as "being a kid" then later "being a teenager" -- if I had been more proactive, I might've gotten answers.

Sorry, a bit longer than I planned -- hope this helps --
drago

#7 Megssosleepy

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Posted 31 August 2012 - 07:53 AM

My earliest memory, around age 2, is of me having sleep paralysis. I ran to my mom and tried to tell her I got "stuck." Because, being 2, I didn't have the word "paralyzed" in my vocabulary. Never in all my years - with all my nightmares and trouble sleeping and difficulty with waking up in the morning - never did a single person in my life even SUGGEST I had a sleeping disorder. When I was a kid, they blamed the sleeping trouble on the fact that I snuck out of bed to watch late night TV with my dad. (The old Twilight Zone, Star Trek, and other reruns like the X-files and stuff.) According to everyone, I had trouble sleeping because I watched scary stuff and had nightmares, NOT because I actually had a sleeping disorder. Even as I was ten and eleven, I had sleep trouble, and everyone wanted to blame my love of scifi as a child... but in reality it was the sleep paralysis. I discovered "sleep paralysis" as a term when I was 15. It had never occurred to me before that there was a NAME for my problem - that it was something that other people experienced. And, never did my relatives or friends ever suggest I go to a doctor about it. Because -- at least it seems to me -- people see sleeping problems as bad behavior, emotional problems, etc.

The thing is, at age 15, I told my GP doctor about it. I said, "I've had sleep paralysis for as long as I can remember." He did not suggest a sleep study, nor did he ask me about other sleeping problems or fatigue during the day. He seemed to think it solely stress related, which would have been cool. What would have been cooler would be if he had alerted me to the possibility of narcolepsy, or that SP could be related to ANYTHING ELSE other than "stress."


I was the same exact way (minus the scary sci-fi NOOO scary stuff for me) I used to see bugs crawling on the ceiling as well as a dark shadow sitting at the end of my bed, the youngest I can remember is when I was three... I got out of bed 3+ times crying there are ants crawling on the ceiling... they always just thought I wanted to stay up late. Then as I got older me being tired was blamed on other stuff... and omg the SP! I thought that I really was being possessed by the "devil" (for some reason demons liked to pull me down into my bed... until I felt like I would suffocate in my mattress...!! As soon as I found out what was really going on (around age 22) I was able to fight back a little better. My worst always happened when I napped, so I just drank sooo much caffeine and my 20+ times waking up at night was blamed on that...
When I was first Dx'ed I was really really pissed at every doctor I complained to and mad a my parents for thinking that it was normal that a 13 year old-18 year old would rather go to bed at 8pm then hang with friends or watch TV. I keep thinking how different my life would be if Doctors and my parents actually listened to me instead of blaming me! Took me going to my College student health begging for sleeping pills because I would wake up so many times all night long and I was sooooooo tired! She wouldnt and said I needed to see a sleep speicalist... longer story just long. He mentioned N as soon as I told him why I was scared to nap! Never in my wildest dreams would I have thought in a million years that I had N!! But here I sit...
I am working really hard to get past the What ifs? But, I still feel very angry and that my life could of been so much better had a doctor taken the time to listen to me instead of blaming me!! ERRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR :angry:

I to have started making lists and asking more questions then Drs. want to answer... but it seems to be the only way to get answers!

#8 Heidi L

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Posted 01 September 2012 - 12:51 PM

If not Narcolepsy then what?
Hyperinsulinemia.
Gluten intolerance.
Strep Infection.
That's what.

Real answers here.