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Idiopathic Hypersomnia Has Ground My Metabolism To A Halt

Hey guys,
I don't know who out there will take the time to read this, but whoever does, thank you. I, like many of you, suffer from Idiopathic Hypersomnia. I have a few guesses as to what has caused this disorder for me, but no real proof for any of it. Furthermore, my sleep doctor seems to feel that giving me a stimulant (half a Nuvigil these days) for four or five days a week has "solved" my problems.
Well, it really hasn't. I'm able to feel so much more like a normal human being these days, and Nuvigil has restored my "battery life" to almost normal, about four days a week.
Even if I was ready to accept that I will only have about four good days a week for the rest of my life, there is a glaring problem that is baffling to me these days. I am not only not losing weight, despite trying, but am actually gaining weight. This is to be expected with IH, but NO ONE seems to have advice!
If IH has destroyed my metabolism, and I'm too tired to workout even harder, and am already eating well, what else can I do to lose this weight?? I'm desperate. Any ideas would be so greatly appreciated.

As always, still praying for things to turn around for me, and for all of you too.
Pam
psommer12 psommer12 22-25, F 11 Responses Aug 3, 2012

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I just found you all, thx. Feeling frustrated myself. Found out more things about my condition that I care to know, but I guess knowledge is power?, not feeling it. Yes I have IH. Ive been on modinifil for around the years, provigil before that. My understanding is modinifil I'd just a generic of provigil. It works well for me, but some days it's like it stopped or I need a double dose. I do feel there maybe as gluten connection and with all the crap in food these days going all raw or organics makes sense, and of course exercise. I've done the healthy route n definite improvement, but if I get off routine in any way, such as a year of no choice OT at work I just had there was no time for self care and carb attack here I come. So yes, gotta couple questions if anyone has some info for me. I seen some info that this may be hereditary and my daughter is showing some signs I believe, anyone know for sure? Other thing is, I find when my brain doesn't wake up, it's an all over body thing. Not cataplexy, but weakness. The more tired I am, less strength in my muscles. Anyone else experiencing this?, Thx

Pam: I am 55 and have had IH since age 15 but did not know until 10 yrs ago with a Sleep Study Diagnosis. I am too tired to eat so weight gain is not an issue. I also have a constant, day and night headache that never stops. it started 7-4-09. I have had monthly--to-bi weekly--to weekly now migraines since 1987. I can't take any meds that have headache as a side effect. I have the suicide hotline on speed dial.

I sometimes think that for people with hypersomnia it's like you're a bear hybernating and your body thinks it needs to fill up on calories for when your sleeping. That's how I feel. It's like your body is preparing for a long winter and is storing up fat to live off of. I tease that I am really a bear inside. lol
I think our bodies do not really know we are human and don't do "hibernation".
Just my thoughts.

april

Hi apemay, I know, I feel myself wanting carbs all the time because my body's like "hey carbs give you energy right??" and I need energy so badly. But this only results in eating carbs I don't need and gaining weight I don't want. It's tough.

Hi everybody, I'm so glad I stumbled upon your post, I was diagnosed with IH in 2009, but have managed to cope pretty well since without medication and I also thought it was only Gluten Intolerant and not a real sleep disorder lol. I'm waiting to see another specialist as I think mine is recurrent, maybe a bit like Kliene-levin. Anyway, I was away for three weeks at Christmas time with my children and after I returned, I slept every day, all day, and had put on 4kg's, I actually thought it was depression as I have been diagnosed with Cyclothymia (milder form of Bipolar). I started Modafinil, ate well, exercised and the weight is still sticking, so I'm also guessing that IH is playing with our metabolism.
Although, I just weaned myself of Prozac last week as I read that it makes Periodic Limb Movement worse, and it's amazing but my night time sleep is way better now, how come the docs don't know this. I love Google lol.
I have started delivering catalogues as of last week to make extra money and I've taken on too much this week. I'm pushing myself to deliver them by a specified time and have found that the increased physical activity has exhausted me. We can't seem to win, we need extra exercise to help with weight loss, but by doing more it exhausts us, well me anyway.
I haven't got a solution at the moment, but I'm sure with all our research we're bound to discover something to help us with our battle. I've learnt so much more just from Googling, especially when I add 'scholarly' to each search.
Happy thoughts to everyone, be kind to yourself and don't let anyone make you feel like we're just being lazy oxox

That's a pretty clever idea, to add "scholarly" to Google searches! I wish I could do something to decrease my Periodic Limb Movement, because there's always a chance that can cause "excessive daytime sleepiness," but meds didn't work for me. Are you doing okay off Prozac? Sucks that every medicine has its downsides. You be kind to yourself too, and take it easy. I completely understand about extra activity just exhausting you. We're not lazy at all-- we work very hard to deal with IH! There's something to be said for all that hard work. It's work that most people take for granted that they don't have to do. <3

Try hydroxychloroquine 600mg a day.

Thank you for your kind message back to me. I was on Cymbalta and you are exactly right about the nasty withdrawls. I am not 100% for sure but I believe I may have gained a little weight on that one. I really don't know if the pamplet on that one says can cause weight gain or not. The reason I don't remember is, I was on it for about 6 months and all I did was cry. It was so horrible and even being weaned off of it, I experienced the crying spells for about 3 more months from being on it. I think you are making a good decision on that regarding the fact that you don't want it to interfere with your school. I am on an old anti-depressant that is considered a tricylic one called Amitriptyline and a lot of doc's don't really use it any more because it is so old and sedating. My doc put me on a really high dose which is kind of scary because I had to go to the hospital because it causes such dry mouth and I have been having involuntary movements of my mouth which is driving me crazy. Since the doc is out for the weekend I am trying to wean myself slowly down back to 125mg so I will stop doing this with my mouth. I started on the 125mg Nuvigil and about a week ago bumped up to 250mg. I am so amazed at how I make my bed and face the day....see I'm on here and it is almost 3 in the morning...lol. I think that if you are on a lower dose of Nuvigil and still feel that you are finding yourself wanting to sleep a lot in the day that it would be ok to ask your doc to bump you up to 250mg and can't even explain what it has done for me. I was fighting some infection and for several days, I got emotional thinking it wasn't working but since I think the infection is gone, I have noticed the desire to take a nap is not there. I also fear getting immune to it as well. Thank you, for your nice comments to me and I am not trying to get all Christion on you but here is something I think about that gives me strength to hold on and fight this. "The bottom of GOD'S purse, holds a lot of CHANGE" =) it makes me fight all of the horrible things that have been said and done to me by some of the most important people in my life that let me down many times through all this. Nasty comments said to me and behind my back, and they don't even have a clue. Sweet Dreams and You are Beautiful!

Pam, I just found out that I have IH this april, right before my 40th birthday. Man have I been on this crazy rocky roller coaster that I am so sick of riding. I was first on Adderall and that was all bad. I actually had it in my jr high years and my doctor said I was in remission (if that's possible) when I became pretty successful for many years. When I got pregnant with my daughter I fell really ill....as I stopped my high dose of anxiety medication cold turkey....not good. Anyway, I was referred to this psychiatrist that misdiagnosed me as having bi polar. Been through so much bad stuff throughout the years. But I just started Nuvigil I believe right at the beginning of August. I didn't think it was working but I was fighting an infection (I believe caused by my anti-depressant...for my mood) Since I have pretty much kicked the infection, I take my 250mg nuvigil in morning and feel really great. I wanted to ask you since you are worried about your weight if you are taking any anti-depressants or any other med's. If so, I have experienced probably ALL of the bi polar and anti-depressants out there. I know which ones can cause weight gain. I feel for you sweety, I know it is hard but keep your head up. It seems that I feel good at times and other times I feel there is no hope. We can either crash & burn or we can do the best we can to fight it, which is so hard because these med's just seem to work for awhile and then we build up a tolerance to them. I slept about 22 hours a day and when I was awake I was really moody and wouldn't eat a thing. I still don't have a good appetite. Let me know what other med's you might be taking and maybe I can give you some advice. Have a wakeful week. Hope to keep in contact with you an a couple others on here. I live in Springfield, Missouri which is a pretty good size city, where Brad Pitt went to all of the schools that my son went to. And my neuropsychologist says, I am the only one in this town and all surrounding areas here that he treats for hypersomnia. try to stay positive sweetie. Donna

Donna, thank you so much for your sweet response. Yes, I am on an antidepressant (Cymbalta) that I've begun taking at night to offset any sleepiness it might add. I'm going to graduate school this year, and as Cymbalta is known for a nasty withdrawal experience, decided to stay on it for this year to keep myself stable(ish) until after school. If I'm unable to lose weight in this next year though, it'd probably be a very good idea to try another antidepressant.
What a strong and compassionate person you must be, to have raised children and persevered through so much time fighting IH. I very much admire you. I may need to try a higher dose of Nuvigil, myself. Is it going alright for you so far? I just fear becoming "immune" to it.

Hi Pam,<br />
I am on stimulants for IH, and trying others cuz I'm still having so many problems. But even when I take a ton of Adderall, I gain weight. I used to exercise every day and could keep my body healthy. But the fatigue that started as a teen is now way out of control and trying to exercise is an almost impossible task. If I manage to exercise some, I sleep through the next day. And I am gaining weight no matter what I do. So I think you are right - IH affects metabolism. Sorry to hear you are diagnosed with IH so young. I hope it gets better for you.

I totally agree. I even saw a nutritionist, described my eating and exercise habits, and she had no suggestions for improvement. She said, "wow, you eat really great!" It was so frustrating. I just wanted to say "I know! That's why I'm here--to see what I need to do to actually lose weight, if I'm already doing the right things!" I am hoping that small, consistent efforts will pay off...and that maybe it'll just take longer than it would for a person with IH. Very best of luck to you. I'm sincerely hoping that we can find away...because I'm told weight loss can diminish the symptoms.

Sorry, meant to say without* IH there.

Hi,<br />
<br />
I have the same issue. My sleep specialist said that people with IH have obesity, depression and exhaustion. He talked about the metabolism too. I am the heaviest I've ever been despite eating less and less. I thought I'd lose weight because I'm not eating when I sleep. I saw a eating disorders psychologist who said I needed to eat 6 small meals a day to restart my metabolism. She also told me to eat anything I wanted as long as I thought about whether I really wanted it or not. At first it was amazing. I started to feel hungry and enjoyed eating again. But then I started to go through some stuff at work and stopped eating again. Talking about it makes me realise I have to get back to it. If you want to give it a go let me know how you go.

You know, that is a good suggestion! If nothing else, it is something I have not yet tried. Thank you so very much for sharing...I may give it a whirl. Very best wishes to you.

I am going through the same thing. I cannot lose any weight and every time I think I have some energy to exercise I can' t and therefore cannot lose any weight and it is affecting everything else health wise. I am sick all the time with severe broncritis. I am so sick of this. I have such a hard time going to work, and now I am on the night shift and it doesn' t work either. I am so glad I found this site.<br />
<br />
So Sleepy

I'm glad I did as well. It's important that we support each other and have someone to relate to... it's good to have someone know how you feel, and to be able to reassure each other of how strong we are to carry on when we are so very tired. Best wishes to you.

Make sure you get the sleep your body requires. I was told that without proper sleep you can't loose weight.. so be gentle with yourself.

Trust me, with my disorder, there is no problem getting plenty of sleep. Staying awake is my real issue. Thanks for your comment, stressedlisa.