Needing some new eyes and ears to help me work through this

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First off, hello everyone! :)

I can't even begin to explain how grateful I am that this site exists and that there are others out there also going through the same type of nightmarish realities. It seems as though no one around me in my life can really understand, and honestly, who's to blame them. If I even start to tell those in my life how I'm feeling and how today is more of a struggle, they just respond with, "ya, I'm really tired too." They just don't get it.

I have only been diagnosed with IH so far, as I have EDS, as shown by my first sleep study. However, my sleep specialist thinks it has graduated to N. As the last few years have gone on, I've discovered I've been experiencing cataplexy for quite some time now. Honestly, when my sleep specialist had first asked if I had been experiencing it, he asked the general questions, like do you fall down when laughing hard. But my cataplexy is different. So I didn't properly answer him. I've noticed so far that my triggers are extreme sleepiness, anxiety, too much going on around me, confusion, stress. But I don't experience the typical cataplexy that's triggered by strong emotions. Not to mention, I don't completely fall down. I only lose muscle function for seconds to minutes, and individually in each limb (sometimes in two limbs, either the same type of limb or the same side), or I'll experience my knees giving in while I'm standing, cooking in the kitchen. I am extremely clumsy, walk like I'm drunk (losing balance often), and slur my words when excited or stressed. Cataplexy is scary, as it's hard to explain the feeling to someone who doesn't experience it themselves. I don't have SP, but sometimes I can't move for seconds to minutes, usually after something like being tickled and laughing too hard. However, my sympathies go out to those who experience SP because I've read that it is terrifying. I also don't experience too many HH, mostly just color/light orbs in my peripherals, but I do experience auditory hallucinations, and those freak me out.

Any time I sleep, I feel like I've slept for maybe 2 to 3 hours, even if I've slept for 9. I find that I sleep pretty heavily for the first few hours, but then I wake up, toss and turn, dream a lot for the last few hours. Even so, it's hard to wake up in the mornings, so I set at least 3 alarms to get myself prepped to actually wake up. Once I'm up and out of bed, normally I do okay for the next few hours. But as soon as 9 comes around, I start to find myself feeling slumpy, heavy, dizzy, and distracted. When I start to find myself hitting an EDS attack, my head tilts to the side, because it gets to heavy to hold up. It's just exhausting and all I want to do is sleep. Sometimes I can take a 2-6 min nap at work, and it helps me feel clearer, even for an hour! Which is extremely helpful, but hard to get away with while working.

After my first sleep study, over 3 years ago, I was prescribed Ritalin. But after so many months of taking it, it started to help less and less, so I stopped taking it. Now, I've been struggling without medication, and trying with holistic methods to help. But nothing is working, and things are getting worse. I'm finding that I sometimes have to nap at work, and I will go to extremes to make it happen. If I can get up and at em, and excited about what I'm doing, I find I can actually accomplish quite a bit, and I have an insanely wonderful work ethic. I'm set to have a second sleep study in the end of November. So, I guess we will see if my IH is actually N.

I'm just curious, as you guys can relate to so much more of what I'm experiencing than anyone else in my life, does anyone else have similar issues? I've been experiencing my EDS since high school at least, so I'm wondering if maybe it's been N this whole time and my cataplexy is becoming more apparent now? I feel it's getting worse, but then there's misconstrued information about how N and C can't get worse as time goes on. Then why is it seeming to get worse?

I currently take nortriptyline for my IBS, only 10 mg once at night. I didn't know it was something that could help with the cataplexy. So when I saw the neurologist, who my sleep specialist wanted me to see, he asked if it helped with my cataplexy symptoms. I wasn't aware at the time, but this last weekend I missed three days of my dose and my cataplexy got so bad, I was shopping with my BF and I had to squeeze my hands so hard, over and over and over again, to avoid dropping everything and potentially collapsing. My BF had us hurry up and finish and we couldn't finish doing the rest our errands because I was just done. I tried to eat a burger later, and dropped it TWICE because of the cataplexy. I am back on my dosage, and I can already notice a HUGE difference, even though I still experience C, it's just not as bad, and not as debilitating.

This whole thing has me in such a weird mix of emotions. I have an amazing BF, but he doesn't understand all the way, and I feel like I'm drowning him with questions and discussions. So, I'm bringing myself here, to get others perspectives on what could be happening and how to handle myself. I know that I'm not alone, but it sure feels like it!

Thanks to all of you ahead of time. I know you guys feel similarly and I really appreciate any insight you have to share. I've read so many of your discussions and responses, and I know all of your stories are different. It's almost as if N is like pregnancy and no two cases are alike. LOL! We are all just snowflakes! ;P

Hope everyone has a wonderful day, no matter what your obstacles may be!

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Hi Delusion_L. I’m not sure I can offer you much other than the assurance that you are not alone. I came here a little over a week ago feeling the exact same way and I’ve quickly discovered that I am not so alone. It’s such a comfort and like you, I am glad this site exists.



I only was diagnosed a month and a half ago, although my doctor suspected N might be the answer for a few months before we were able to get the insurance to agree to a sleep study and then of course schedule said sleep study.



I do not have any sysmtopms of cataplexy so I cannot relate with you on that. I can relate on the falling asleep at work (that’s happened on more than one occasion and I work in a very small office where it does not go unnoticed) and feeling like no one truly understands. I too have people respond with the “I’m really tired too” line when I try to reach out and share. I don’t want to discount their feelings because I’m sure they are tired, but they’ve got no idea what N feels like.



I still have a lot of research to do and I’m so lost when it comes to N and everything it entails, but I do know that I have had sleep issues for most of my life. I have always been a very light sleeper. I would wake up to my parents opening the door to my bedroom as a child or the newspaper hitting the front porch. By the time I hit high school I was falling asleep in class, and while lots of kids do that, I did it a lot more than most. I also started with insomnia issues by age 16. I had a sleep study done around that age but it didn’t include an MSLT, they were mainly looking for sleep apnea which they ruled out. The insomnia would come and go and for over 10 years I accepted it as part of my life. It wasn’t until about a year ago that I started noticing that no matter what I did, no matter how long I slept, I was tired all of the time. I talked to my doctor and after we exhausted all possibilities, she sent me to a sleep specialist who started with a home sleep study to check for sleep apnea (I have a family history of it so we assumed that was the problem). When that came back clear we scratched our heads for a while, I tried meds to help me get to sleep at night better and when that didn’t make a difference he started to suspect N or IH might be the cause of the problem. When the MSLT came back, it was undeniably N. Now looking back and talking to him, he and I both suspect that I developed N as a teenager, if not earlier. We have no way of knowing for sure but it fits and explains a lot of things. For some reason it got drastically worse over the last year. I’m curious to research if it’s an age related thing or stress? But personally, I have experienced a change and found my N to get much worse than it ever was before.



Like you said, we are all snowflakes here, but we do understand each other in a way that no one else can. I am still fighting to get my husband to read one thing about N so that he knows SOMETHING, ANYTHING about it. I’m glad that your BF is supportive of your needs. Support can make all of the difference.



I wish you luck with your sleep study. Hopefully they can nail down something. Be it IH or N (it sounds like N), it gives you somewhere to go instead of floating in uncertainty.



Melissa

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Hi! Delusion_L, I to have N and it does progress over time mine had progressed and I was diagnosed in 2011. I see a drastic change in my N since I was 1st diagnosed and i have also developed insomnia, anxiey, and depression but I’m on meds for those also. I’m going to keep on fighting this debilitating disease because I have 3 children and a wonderful husband that needs me, it gets really hard at times but I will not give up. I pay u find the help and answers your looking for.

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@Melissa Thank you for the response. I understand we all have quite the differences in our situations, but so many similarities that we can actually see fully eye to eye. I feel like you and I are in such similar places. No one cares to learn about N. They just assume it's like Mr. Bean on Rat Race. Thank you for responding to me and helping me work through this. I appreciate the extra support you provide, even without knowing me personally, so seriously, thank you.

@Punkin I'm relieved to have you say that N progresses. Makes me feel like I'm not quite losing my mind. Although, it sure feels that way. I am a mother as well, so it means a lot to hear that others are overcoming similar obstacles daily. Thank you so much for your response. It means so much.

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Hello Delusion_L,

I think Narcolepsy does change from time to time. That's what I've noticed after 3 years since diagnosed. The changes make things more difficult. We all like "steady" and predictable. But we don't get that often.

Try to accept your self, do the best that you can each moment and just don't be too hard on yourself.

Glad that you are on this site and you will find kind and helpful souls here who know exactly what you are sharing :-)

Via Con Dios!

Ranger

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Ranger,

I definitely agree with you on liking things that are "steady" and predictable. And with N, I've not found anything predictable. Just becoming more aware of triggers and what enhances and increases my symptoms. But, nothing remains in pattern, and it's frustrating.

Thank you for your kind words. They help in so many ways. We may all have this thing to deal with, but it's nice knowing I'm not alone.