3 replies to this topic

[sleepygrl]

Sorry for the long text. I needed to just cry this out. I hope someone reads this and relates to it in some manner somehow, so we can exchange experiences. I don't know were I'm doing wrong and I strongly need advice.

Just to resume: my MSLT points out Idiopathic Hypersomnia and ruled out Narcolepsy. Still haven't talked to my doc, so it's not official. Nevertheless, symptoms DO exist and they are ruining my life, so call it whatever name it suits you best, it does not change the fact that I have EDS and sleep inertia and it does not make it easier to cope.

I have loving and caring parents, but why do they fail in helping me cope?
My parents were terrified thinking I could have narcolepsy. They were REALLY terrified.
When I came home with the results, I told them "no REM, so it's not N. Seems like IH".
My parents were so relieved they started to "celebrate". Unfortunately, I had nothing to celebrate, as I knew from that moment on that it would be a struggle not only to cope with IH, but it would also be a struggle to make people take this illness seriously, and that includes my parents. People tend to think IH is less terrible than narcolepsy, but honestly? One cannot state that, as both have similar symptoms (except for cataplexy, of course), and the gravity of the symptoms vary from person to person, not to mention it is a life-lasting struggle.

My parents keep telling me "it will be alright, you will be medicated and be cured!", despite my attempts to show them it is not that simple.
I wish there was a cure and yes, I'm still in the optimistic phase. I go to sleep every night thinking "tomorrow will be different, tomorrow I will wake up on my own, in time, without difficulty. Tomorrow I'll wake up and find out that it was just a bad phase my body was going through, and I'll find out I'm normal and never again have problems waking up!". I find myself telling me that all the nights for the last 11 months or so, so YES, I want to believe that I'm just in a temporary condition.
But as time goes by, I get more and more convinced that it is not. This has "evolved" progressively and fast during last year. I can't remember when it was the last time I woke up without difficulty.

I totally depend on them to wake me up. Can't wake up by myself anymore, and that is official. I just realized it yesterday, trying to wake up on my own for the third week in a row. When I finally got out of that morning hallucinating-mental-confusion-state, I found myself capable of going to the bathroom. As I got to the bathroom to comb my hair, wash my face and do my makeup, I started crying. I don't want to be dependent, I wish I could work this out on my own, I wish I could be normal. I realized how lost I would be if I lived by myself, and pictured me needing to have someone by my side forever. I know it's not that bad, because at least I don't depend on people for other trivial tasks, like walking, eating or bathing myself, but MAN! I used to be a perfectly functional independent girl. I'm 24, people expect me to need my parents less and less as time goes by, but I'm needing them more and more.

About my struggle to wake up in the past months, my parents knew that from the beginning, and they were totally supportive when they thought it was narcolepsy. By the moment it came back as IH, they stopped worrying and stopped helping me wake up, as if IH was my fault. They act as if it's not THAT serious. My dad does not have always the same schedule, so it was my mom the one responsible for waking me up. After the IH diagnosis, she stopped insisting in calling my name in the mornings.
Anyhow, there was a week I noticed I was waking far too late. I would just get up, brush my teeth and dash to the office. I thought it was very odd, I could not manage to wake up before 9 am for the whole week, something was wrong. I asked my mom how often in these mornings she checked me in my room to see if I was still asleep, and she told me: "Oh, I'm not waking you up at 6am anymore because there was a change in my schedule and I need to wake up only 8pm".
I was devastated. WHY didn't she tell me? It is important for me to be in the office at 8 am, and she knows I can't manage to do that alone despite all the alarm clocks in my room. She doesn't need to wake up 6 am to wake me up, that is not her obligation. But damn, why didn't she tell me she would start waking me up in a different hour? Then I could ask my sister to wake me up instead, or I could talk to my boss and explain what was happening. I nearly lost a meeting because I did not knew she would wake me up only after 8am. Seriously! She saw my upset face and replied: "I did not know you needed my help ALL of the mornings, you need to tell me that in advance". Wait... WHAT? Of course she knew! And you know what is worst? She SEES the struggle it is for me to wake up everyday, it was because of that struggle that she told me to go to a doctor in the first place.
My dad told me: "It's your fault your mother did not wake you. If you have a hard time waking up every morning, you have to tell us so we can take some measures. We don't have to guess!"
I just couldn't believe what I was hearing. Seriously? I thought we were in a struggle together, but at that moment I realized I was alone. The moment narcolepsy was ruled out, they started acting as if none of this I'm going through is really serious or at least real. I don't know, but that sounds as some type of denial for me. Or maybe they think I'm a burden (they spend some time waking me up). Maybe they are tired of having to care. Or maybe they really think its not THAT serious and that I'm just making to much drama.

So I got really upset for knowing I depend on my parents and how hard it is to make them understand what I'm going through. I figured I'd go talk to my friends just to cry out my misery and concerns. What a mistake. If my parents have a hard time understanding my illness, my friends are totally clueless. I try explaining what I'm going through, and all I hear is:

"You should not depend on your parents. Buy a new alarm clock"
(yeah, sure, like I didn't try all the ones I could! SOMEDAY maybe I'll find a magic one that wakes me up, so yeah, let's not wait until "someday", shall we?)

"I have that too! All you need to do is go to bed earlier!"
(yeah, and you think that after a year of struggling, I wouldn't have already had come with that up? Nice try...) (Oh, and what's with the "I have that too"? Surely, friend, that by going to bed late you might have some trouble waking up in the morning, but I strongly doubt you find yourself in a 2-hour hallucination state in the morning. Were you even paying attention when I got to that part?)

"You don't have nothing serious, you don't need medication. You need to eat better and do exercises!"
(yeah, like, exercises are the cure for everything nowadays)

"You should see a psychiatrist, people tend to think they have an illness but most of the times it's mentally related, most likely it is caused by stress or depression"
(This one is the only one who said something that made sense, since IH is related in most cases to depression. HOWEVER, I know it is not depression nor stress because I know what depression looks and feels like. What I'm experiencing now is not even close to that. Getting out of bed is SO hard nowadays that the only thing that gives me strength enough to get out of bed is the idea that I want to live this day to the max. I want to LIVE, and for that I like waking up as early as possible so I can make the most out of my day. Of course, I only remember I have a life to live once I get out of the hallucination/dream, and that is the difficult part. No, it's not lack of energy and it is not lack of happiness. It's these damn dreams that make me so confused. I wake up and continue dreaming, and my body just does not respond appropriately to my commands, so I end up falling asleep again before I now it. So hearing from someone that it might be depression makes me sad, I feel that nobody understands me. I know it is not mental because I feel my body is failing and my mind is still at peace, despite all that is happening to me).

The only person who seems to understand me is my sister.
She wakes up real early, so I asked her yesterday to try to wake me up before the sunrise. When in my teens, I loved the sensation of waking up before the sunrise and I miss it SO MUCH! Love the dark feeling outside, the silence in the house, love going out and watching the city waking up gradually, first in the dark with the lights on, and then the sun comes up! Missed that real bad! It was hard getting out of bed, but I just figured I really deserved that! EDS got worse, slept while talking with my co worker today, I blame it on my little adventure waking up early, but it was totally worth it!
I love my sister for understanding me. And I feel very sorry for depending on her. I feel like a burden.

[sometimes]

If you're diagnosed with IH, then your sleep disorder is probably worse than the average case of narcolepsy. My reasoning for this is that 50% of narcoleptics are undiagnosed.

My parents were largely ignorant for some years. This brought a lot of devastation into my life. The tension is not as bad now, but I don't know if they either understand more or they know that, when it comes to sleep, I will hard line against them. Perhaps, it is some of both.

Why do you need a human to wake you? What does a human do that an alarm clock does not? Really, I don't know. I've always been able to wake up just enough for me to disable an offending alarm clock. Many people take their medication and then go back to sleep for 30-60 minutes.

[snarkoleptic]

Sorry for the long text. I needed to just cry this out. I hope someone reads this and relates to it in some manner somehow, so we can exchange experiences. I don't know were I'm doing wrong and I strongly need advice.

Just to resume: my MSLT points out Idiopathic Hypersomnia and ruled out Narcolepsy. Still haven't talked to my doc, so it's not official. Nevertheless, symptoms DO exist and they are ruining my life, so call it whatever name it suits you best, it does not change the fact that I have EDS and sleep inertia and it does not make it easier to cope.

I have loving and caring parents, but why do they fail in helping me cope?
My parents were terrified thinking I could have narcolepsy. They were REALLY terrified.
When I came home with the results, I told them "no REM, so it's not N. Seems like IH".
My parents were so relieved they started to "celebrate". Unfortunately, I had nothing to celebrate, as I knew from that moment on that it would be a struggle not only to cope with IH, but it would also be a struggle to make people take this illness seriously, and that includes my parents. People tend to think IH is less terrible than narcolepsy, but honestly? One cannot state that, as both have similar symptoms (except for cataplexy, of course), and the gravity of the symptoms vary from person to person, not to mention it is a life-lasting struggle.

My parents keep telling me "it will be alright, you will be medicated and be cured!", despite my attempts to show them it is not that simple.
I wish there was a cure and yes, I'm still in the optimistic phase. I go to sleep every night thinking "tomorrow will be different, tomorrow I will wake up on my own, in time, without difficulty. Tomorrow I'll wake up and find out that it was just a bad phase my body was going through, and I'll find out I'm normal and never again have problems waking up!". I find myself telling me that all the nights for the last 11 months or so, so YES, I want to believe that I'm just in a temporary condition.
But as time goes by, I get more and more convinced that it is not. This has "evolved" progressively and fast during last year. I can't remember when it was the last time I woke up without difficulty.

I totally depend on them to wake me up. Can't wake up by myself anymore, and that is official. I just realized it yesterday, trying to wake up on my own for the third week in a row. When I finally got out of that morning hallucinating-mental-confusion-state, I found myself capable of going to the bathroom. As I got to the bathroom to comb my hair, wash my face and do my makeup, I started crying. I don't want to be dependent, I wish I could work this out on my own, I wish I could be normal. I realized how lost I would be if I lived by myself, and pictured me needing to have someone by my side forever. I know it's not that bad, because at least I don't depend on people for other trivial tasks, like walking, eating or bathing myself, but MAN! I used to be a perfectly functional independent girl. I'm 24, people expect me to need my parents less and less as time goes by, but I'm needing them more and more.

About my struggle to wake up in the past months, my parents knew that from the beginning, and they were totally supportive when they thought it was narcolepsy. By the moment it came back as IH, they stopped worrying and stopped helping me wake up, as if IH was my fault. They act as if it's not THAT serious. My dad does not have always the same schedule, so it was my mom the one responsible for waking me up. After the IH diagnosis, she stopped insisting in calling my name in the mornings.
Anyhow, there was a week I noticed I was waking far too late. I would just get up, brush my teeth and dash to the office. I thought it was very odd, I could not manage to wake up before 9 am for the whole week, something was wrong. I asked my mom how often in these mornings she checked me in my room to see if I was still asleep, and she told me: "Oh, I'm not waking you up at 6am anymore because there was a change in my schedule and I need to wake up only 8pm".
I was devastated. WHY didn't she tell me? It is important for me to be in the office at 8 am, and she knows I can't manage to do that alone despite all the alarm clocks in my room. She doesn't need to wake up 6 am to wake me up, that is not her obligation. But damn, why didn't she tell me she would start waking me up in a different hour? Then I could ask my sister to wake me up instead, or I could talk to my boss and explain what was happening. I nearly lost a meeting because I did not knew she would wake me up only after 8am. Seriously! She saw my upset face and replied: "I did not know you needed my help ALL of the mornings, you need to tell me that in advance". Wait... WHAT? Of course she knew! And you know what is worst? She SEES the struggle it is for me to wake up everyday, it was because of that struggle that she told me to go to a doctor in the first place.
My dad told me: "It's your fault your mother did not wake you. If you have a hard time waking up every morning, you have to tell us so we can take some measures. We don't have to guess!"
I just couldn't believe what I was hearing. Seriously? I thought we were in a struggle together, but at that moment I realized I was alone. The moment narcolepsy was ruled out, they started acting as if none of this I'm going through is really serious or at least real. I don't know, but that sounds as some type of denial for me. Or maybe they think I'm a burden (they spend some time waking me up). Maybe they are tired of having to care. Or maybe they really think its not THAT serious and that I'm just making to much drama.

So I got really upset for knowing I depend on my parents and how hard it is to make them understand what I'm going through. I figured I'd go talk to my friends just to cry out my misery and concerns. What a mistake. If my parents have a hard time understanding my illness, my friends are totally clueless. I try explaining what I'm going through, and all I hear is:



The only person who seems to understand me is my sister.
She wakes up real early, so I asked her yesterday to try to wake me up before the sunrise. When in my teens, I loved the sensation of waking up before the sunrise and I miss it SO MUCH! Love the dark feeling outside, the silence in the house, love going out and watching the city waking up gradually, first in the dark with the lights on, and then the sun comes up! Missed that real bad! It was hard getting out of bed, but I just figured I really deserved that! EDS got worse, slept while talking with my co worker today, I blame it on my little adventure waking up early, but it was totally worth it!
I love my sister for understanding me. And I feel very sorry for depending on her. I feel like a burden.

Hey! I really understand what you're going through. I'm 25, close in age to you. I have IH too, I was borderline for narcolepsy, but not enough REM - even though I do have cataplexy. (and I know, my username is misleading, but it was just too funny! There are no good puns for IH... and I do get so snarky when I am sleepy!) So anyway, I just wanted to say, I *really* know what it's like to be taken less seriously because it's "not narcolepsy". The way I see it, it's a disorder, and it's bad enough for them to medicate you, and it's interfering with your life - so it's a problem! Depending on the situation, I sometimes just tell people it's narcolepsy, because they understand that better. But with family and friends, you have to explain things more deeply, and they can be kind of dismissive. My mom has generally been really supportive, but sometimes friends say a lot of things you mentioned - or my favorite "You just have to MAKE yourself get up!" As if that wasn't the thing I was struggling hardest to do. It can really add to the feeling that we all fight against - that it's just laziness, that if we just tried harder we could get up, stay awake, etc. But it's not our fault! It's hard not to heap the guilt on yourself, but you have to try not to. I really relate though. Yesterday I tried a new med, and it didn't work at all and I napped like 5 times, and I'm trying to write a paper that I have to present to my class, and after that I just felt like such a failure, and cried about it. So I know the feeling - it's like, "why can't I just conquer this? why can't I function like a normal person?" But the answer is because you have IH - it is a real burden, and it isn't your fault.
My mom used to bring me cups of tea every morning, and make me sit up, and i'd still fall asleep and spil them in my lap. But I live in New York now and she's in Australia, so I don't have the option of her help. It forced me to have to deal with it myself, and I am sure you'll be able to, too! It will be nice not to feel dependent on them. And I believe you can do it! All of us on here know what that struggle is like, and there is no easy fix. But for me, I similarly found that talking to someone and having them tell me to wake up was most effective, because somehow that triggered my brain to start functioning. I've found that if I can't have a person there to actually wake me up, it helps to have talk radio. When there are voices, they can bring my brain to consciousness because I start thinking about what they're saying. Of course, a lot of times I sleep through that too, and get really weird dreams that mix in the news stories, haha... So i usually have a radio alarm for an hour or 1/2 an hour before I need to really get up, and then a series of beeping alarms after that. I have my medication on the nightstand and take it immediately (if i can make myself - this morning I could not physically remove the lid, i was so weak!) And even with all of this, it's still hard. But you can try some of these combinations, or maybe you have a friend who would call you? At least on important days, if not every day? I find having to talk on the phone can force me into wakefulness. Also, it sounds like your sister is really supportive. That is lucky, and I think you should talk to her about what you're feeling. Explain that you don't want to be a burden, but I bet she doesn't see it that way. I'm sure she'd be happy to help you wake up. It's definitely a struggle, every day. But don't feel defeated! We can all do it. It will be ok. And if your meds aren't working, you can change them. And maybe talk to your job so they understand if you come in late that you have a genuine medical problem - IH IS real! You have to believe that and make others understand it too.
Big hug. Good luck. You can do it.

[Rainbow]

I am pretty upset that I got the "Mild Idiopathic Hypersomnia" diagnosis yesterday and not allowed to drive to boot!  He threatened to report me to the police!  The clinic is 1.5 hours drive from the small town I live in.  

 

I went to see my uncle, who I haven't talked to for a while, like all my family and told him that I was being tested for Narcelepsy.  So I told them about the disorder and might have convinced them that in spite of earning the professional title of Registered Dietitian, I am lazy. My family is NOT supportive... they blame me for any of my own problems so I just not talk to them.

 

Then my sleep doc responded to my concerns that I can't get my son up for school and can't get him to bed early because I am especially tired those times of day.  He said,"no one lives with you and your son?" "No" "who supports you?"... well I hire a home maker 8 hours a week and my son is in school and afterschool care 3 days a week, so that helps.. but it doesn't help me with getting my son to bed or to school. He has given me a prescription of 60 mg of Dexidrine a day.

 

The problem with the diagnosis is I am the same as the day before as the day after the diagnosis.. It really makes no damn difference that I can't get my son to school!  

 

I am going to put the Dexedrine beside my bed with water and try that.... try taking it and rolling back to bed until I can wake up by myself.  I am also going to hire a nanny and probably have to fire my house keeper.  Hopefully I can keep up with the housework.