How Do You Make It?

I have been feeling very misunderstood and alone and was glad to find this website. I had trouble with fatigue as a teenager but was diagnosed with depression. I have tried every anti-depressant imaginable but none helped. Most doctors I tried to talk to about fatigue told me to eat right and exercise. I did! It didn’t help! It got worse until I had to take pills to manage to get through a day of work. I kept pushing believing it was a "moral" issue as my ex kept telling me that I was just lazy and feeling sorry for myself and that I should just pick myself up and quit whining. So I kept pushing and taking meds to get through work and trying so hard to not be lazy and depressed. It wasn't until I started sleeping through entire days that I realized I had a medical problem, not a moral shortcoming. I found a sleep specialist who gave me tests and found I had idiopathic hypersomnia with long sleep time. I now wonder if I made it worse because of trying so hard to work hard and ignoring my body’s signs of illness. Now I realize that my health is more important and I should have listened to my body, but now I am always sick and tired, cannot get through a day of work, and am very foggy and can’t concentrate. I am on a LOA and I am petrified because as a single mom trying to help my kids through college, I don’t see how I can make it. I can only get out of bed by taking pills and even then I only have a couple of good hours a day. I don’t know how I will support myself, much less help my kids. Does anyone else feel like their life is over? Is anyone else afraid they can’t manage to work anymore who has found a way to make ends meet? If so, please help with your suggestions. This post wiped me out. Goodnight.
LuvMyCats LuvMyCats
46-50, F
5 Responses Jul 29, 2012

I found out about two years ago that I had idiopathic hypersomnia.... it made sense, I fell asleep during school, during work, hell once I fell asleep at the gym! Of all places... any who, I did a sleep study; I thought I had problems with sleeping at night because I would wake up feeling like I only slept 20 minutes, it didn't (and still doesn't) matter if I got 4 hours, 8 hours, or 12 hours of sleep. I am tired, period. Well I went to the sleep study over night and the next morning they told me they wanted to keep me for the day for some tests. Every two hours they would ask me to lie down and take a nap. A normal person would fall asleep around 15 minutes of non-activity. I fell asleep at most 2 minutes in... By the last nap of the day I was out within 30 seconds...

For the first year and a half my husband and my parents said that my doctor was wrong. They are the type of people who say that it's all some medication conspiracy theory and that I just over worked myself too much. Like burning the candle at both ends would create you to have chronic tiredness. I don't disagree, but I have to say there are days when I don't get out of bed, I just sleep. Or there are days when I accidentally take a nap and then never wake up... And on those days I NEVER feel refreshed. Only when I accidentally didn't take my medicine on the weekend did they really find out that it wasn't in my head, after I fell asleep while playing softball.... So I definitely empathize with you about people not understanding.

Aaannnddd to answer your question about how to live with this curse... I am sitting here trying to think of an upside or a silver lining, but I can't find one... The medicine doctors offer works for keeping you up; Nuvigil (amazing), provigil (border-amazing), ritalin (sucks...) and modinafil (okay...). The medicine doesn't help getting up in the morning, because it's not in your system yet. The only thing I can say that helps with that is focusing on something. When I become determined, I don't feel like the pain affects as much. I used to run in the morning, and focus on getting healthy. When I woke up saying "I'm going to run!!" I was able to push myself out of bed easier than getting up and saying "shower, eat, work..." Being focused and determined help to get over the hump of the morning, and if your taking medicine life should be bearable.

I hope all is well, and I probably didn't help your situation, but I am pretty new at IH still, so I haven't learned all the tricks. Once I have better news I will let you know!!

hello luv,

i also have horrible IH. I'm 51 and have had the disorder since 1994. but i am writing with what may be good news for both of us.

there was a small study in japan of a small group of people with idiopathic hypersomnia. they were given a small dose of levothyroxine, the drug that treats hypothyroid. within 8 weeks, all but one person went from sleeping 12 hours a night to 8 hours!!!!! i am thrilled about this. but, i can't get my hopes up too high. i'm amazed that more people aren't talking about this study on forums. here is the abstract of the study. (there are other similar studies by the same group of researchers that gave levothyroxine to people with sub-clinical hypothyroid - same results):

Sleep Med. 2011 Jun;12(6):578-83. Epub 2011 May 12.

Effect of levothyroxine on prolonged nocturnal sleep time and excessive daytime somnolence in patients with idiopathic hypersomnia.


Shinno H, Ishikawa I, Yamanaka M, Usui A, Danjo S, Inami Y, Horiguchi J, Nakamura Y.
Source
Department of Neuropsychiatry, Kagawa University School of Medicine, Miki, Kita, Kagawa, Japan. shinnoh@med.kagawa-u.ac.jp
Abstract


OBJECTIVE:
This study aims to examine the effect of levothyroxine, a thyroid hormone, on a prolonged nocturnal sleep and excessive daytime somnolence (EDS) in patients with idiopathic hypersomnia.


METHODS:
In a prospective, open-label study, nine patients were enrolled. All subjects met criteria for idiopathic hypersomnia with long sleep time defined by the International Classification of Sleep Disorders, 2nd edition (ICSD-2). Subjects with sleep apnea syndrome, obesity or hypothyroidism were excluded. Sleep architecture and subjective daytime somnolence were estimated by polysomnography (PSG) and Epworth Sleepiness Scale (ESS), respectively. After baseline examinations, levothyroxine (25μg/day) was orally administered every day. Mean total sleep time, ESS score at baseline were compared with those after treatment (2, 4 and 8 weeks).
RESULTS:
Mean age of participants was 23.8±13.7 years old. At baseline, mean total sleep time (hours) and ESS score were 12.9±0.3 and 17.8±1.4, respectively. Mean total sleep times after treatment were 9.1±0.7 and 8.5±1.0h at 4 and 8 treatment weeks, respectively. Mean ESS scores were 8.8±2.3 and 7.4±2.8 at 4 and 8 treatment weeks, respectively. One patient dropped out at the 2nd week due to poor effect. No adverse effects were noted.


CONCLUSIONS:
After treatment with levothyroxine for over 4 weeks, prolonged sleep time and EDS were improved. Levothyroxine was effective for hypersomnia and well tolerated.

Hi TheNightCafe,

Sorry I took so long to reply. I have rarely been on the computer the last few months. Thanks for the info on levothyroxine. This is interesting since I have a thyroid deficiency and have been on either synthroid or levothyroxine the last 20 years. But that is to bring me to the normal TSH level. I wonder if in this study the participants were given enough thyroid hormone to take them to a particular TSH level? I am at the max dose (any more and I would have hyperthyroidism) but I will show this to my doctor to see if it's safe to go on a higher dose. Let me know if you try it and whether it helps you, too! Hang in there!

That is pretty awful. I know from experience people do not understand, but people telling you you are just feeling sorry for yourself is completely unacceptable to say the least. I would suggest that you push yourself as little as possible while still functioning as best you can in that short window of time. Days that you feel better (I hope you have them sometimes) don't overdo it. Try to take a stimulant break on weekends to preserve the efficacy of the medication - I do realise this may mean spending most of the weekend in bed, but this may be worth it to save the stimulant effect for when you are working. I started experiencing excessive daytime sleepiness at 16. I thought it was chronic fatigue syndrome at first but idiopathic hypersomnia is more consistent with my symptoms. A couple of months ago a sleep study suggested a narcolepsy diagnosis although I still maintain my symptomology as more consistent with idiopathic hypersomnia. It is one hell of a struggle but I do have some tips that I hope may make a significant difference, if you are interested?

Thanks HyperSomniac. What you said makes sense to me. And yes, if you have more tips I am interested. It is so GREAT to hear the voice of reason from someone who understands the condition. Thank you! In hindsight, I don't understand why I let myself be pushed into making myself sick by people who had no clue what they were talking about. Thank you!

I meant to ask for your tips when I replied. I can't seem to do anything anymore. I don't think I can work anymore and I always feel awful. Please send any tips you have! I'm trying to figure out what the best medicine is for fatigue, depression, moodiness, foggy brain, feeling sick from meds, etc. Has anyone tried natural remedies? I hear a lot of claims about natural remedies for mood, fatigue, etc. Has anyone had success with any of these?

I so relate. My kids are done school, I did get through it, although now it is unlikely I will ever work again as I ignored my health for so long. Hang in there.

So sorry to hear that. I feel for you. Women ignore their health for their kids so often. In that time did you see a doctor? Did you have any support? This site is the first time I have had any support at all. So thank you very much! I appreciate it! I hope things get better for you.

I so relate. My kids are done school, I did get through it, although now it is unlikely I will ever work again as I ignored my health for so long. Hang in there.