Idiopathic Hypersomnia is a rare sleep disorder characterized by daytime sleepiness.
Hello, I have been taking Nuvil for about 8 months now. It helps enough that im not sleeping/blanking out during conversations anymore. Probably the most benifit i got from it was a clearer head and with that came a stronger short term memory. For me it does not have the effects of a full stimulant like Aderol, nor the highs and lows. The bad part is that it is addictive and without it I am a witch with a capital B. I find that a strict sleep/wake/med schedule works the best for me. Unfortunatly that mesns my family has to endure it also. Hope that helped. Chris
I have tried a few different medications my doctor gave me. The first one worked for quite awhile then I must of gotten used to it. Besides it not working as well it made my small OCD issues worse. This one I can not take again. One thing I was obsessed with was picking at my arm. It got very bad and I showed my doctor. I have tried two more different medicines and am not having much luck with them. I would love any input from other people. I have noticed my memory is getting worse even though I was forgetful before. It makes it hard to do things, especially things I love. If anyone has any ideas to help please let me know. Thank you very much!
Hello, I have idiopathic hypersomnolence, complex migraines, and an unknown autoimmune disease that affects my joints. I cannot take stimulants as I have Mitral Valve Prolapse with arrythmias. I am now on 5 mg. of prednisone and have found it has helped me slightly with staying awake though I feel more agitated. I also have severe short term memory loss which seems worse on the prednisone. Any ideas as to why prednisone would help with the sleepines? Oh yes, my once quick mind seems to be fading away. It really saddens me.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.