Sleepy And Confused

So, I am a 27 year old married Mother of 2. I was diegnosed with hypersomnia 9 months ago. I am pleased to have a diagnosis in the sense that its nice to know I am not lazy, or depressed, just honestly tired. I used to hide naps from my husband and Mother, my children were well adjusted to Mommy nap time. I was so ashamed I felt as though I was an inadequete human being. My Mother would constantly remark at my housekeeping and my laziness. The relief I felt when i found out that I have a rare disease that I am worthy and it is not in my control was exhilerating. I felt as though I could finally understand myself. I was prescribed Modafinil/Provigil and its effects were immediate I felt like a new woman, my Mother fell ill and I cleaned and maintained her home as well as mine, imagine that! My time with my children was productive. After about 6 months it wasnt so effective I was falling asleep again, and my concentration was poor. I have extremly dry skin with sores, I now am on a loop moniter because of my consatnt tachycardia. It is quite apparent I have to discontinue use, which needless to say devastating to me. I was just starting to enjoy life, and poof its all slipping away again. It has been suggessted that my wild days as a teen are what caused this disorder, which in turn makes me loathe myself even more. It is quite common to become immune to these drugs, and there are not to many of them. My Doc says I ll probably be good for a few years and after that I will just have to suffer, and the liklihood of me getting better are slim. Permanant disability has been suggessted for later on in life. I want to more that that, I want to contribute to life. It pains me to think of spending life sleeping.
Sleepy in Windsor ON, Canada
krobson333 krobson333
4 Responses Apr 16, 2012

Have any of you seen Endocrinologists? After battling this for 17 years (age 17 to present age of 34) I have been diagnosed with Growth Hormone Deficiency. In adults it causes all the symptoms you suffer from with the main one being excessive fatigue. If I were you, I would beg to be seen by one and get your IGF-1 checked to start (precursor to growth hormone and once they see it low you get the official growth hormone stim test), your cortisol levels, your thyroid, your sex hormones, etc... Insist on the IGF-1!!! Then go from there. If your tests come back normal, at least you tried all avenues. If they don't, do NOT give up. Pursue conditions that are caused by the hormones you tested low for and don't give up.

Diagnosis is good, treatment or cure would be best. I am optimistic for the progress medical science is making.

Hi girls, my name is Linda from Pa and I was diagnosed in 02. It started for me in high school. I had no interest in school and had to have a nap every day after school and by the 11th grade I got rather wild and ended up dropping out. Though the end of my first marrage I was on the road to self destruction and went to a head doctor. Well he put me in the physco ward. Shortly after I came out my marriage was over an I flew the coop leaving everything behind. Some things that I wish I would have done differently but I was trying to save myself. Finally I met someone who changed my life and I had enough of being tired all the time because I was not a lazy person. He tried a number of things that didn't work and I actually had to force my family doctor at the time to do something and he finally sent me for a sleepy study which finally was the answer to my being tired all the time. I fell asleep in 4.1 minutes and I had another test done later which showed 4.4. I am at the point in my life at age 58 that I can no longer work and I am going to my now family doctor to discuss SSDI. And hopefully with the help from another group member I can stop pushing myself into death. DID YOU EVER FEAR THAT ONE TIME WHEN YOU GO TO SLEEP YOU WILL NEVER WAKE UP? I DO.<br />
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Happy to hear from you or anyone else who would like to comment. I wish I would have known about this group years ago<br />
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LINDA<br />

Hi, my name is Donna from Springfield, and I suffer this too. I can't seem to get any real responses on here. I don't know if my post was too much for people or if I offended anyone in any way. Are you comfortable with calling me so we could talk about actual help for this.... I can't even get my doctors to call me back in this town. I don't know if i am suppose to give my number on here or if you're even comfortable with that. I just thought we could share some thoughts on not letting this end our passion for life. I also have hypoxia of the brain, I found out in the sleep study which can be fatal if not treated right. Please let me know and GOD BLESS YOU AND YOUR FAMILY. Donna