So far I have been diagnosed with central apnea, dysautonomia and have either narcolepsy without cataplexy or idiopathic hypersomnia. There are still more tests to go. This is costing me everything. When I read the descriptions of idiopathic hypersomnia and narcolepsy I feel that I have symptoms of either and I am starting to wonder if it really matters to me which one it is. Both are apparently incurable and debilitating and the treatment is drugs that I am not willing to take. My other doctors outside the field of sleep medicine seem to be very uninformed or unaware of what these sleep disorders can do and stare at me blankly when I tell them what I have. Maybe I am asking an ignorant question but right now I don't know how I can even pay for this high tech machine to treat the central apnea much less pay for more sleep tests and I'm thinking of just living with "it" whether it is IH or N. I don't know, I don't remember not being tired anyway and have somehow accepted it.
Difference Between Narcolepsy And Idiopathic Hypersomnia
Posted 24 August 2013 - 10:48 AM
i'm sorry you are dealing with this. It sucks, we all know it.
you have to remember that treatments can really improve your quality of life. I have read that the use of a C pap can be life changing. I also am pretty sure there are assistance programs to help with paying for it. I know you said you weren't interested in meds, and I understand that. I am big into natural health too. However, I realize this is a disorder that costs time with my family and friends and I am not willing to pay that, so if meds will help me get through the day, I am all for it. There are also natural approaches that can aide in treatment. diet, exercise, acupuncture, vitamins, etc. there is a wealth of information out there, you just have to figure out what works for you!
Again, I know it's tough.... just take it one day at a time! I will be thinking of you. please keep us posted.
Posted 24 August 2013 - 12:13 PM
check out cpaptalk.com it's a great forum base for apnea issues. The folks there can point you in the right direction for gear. There are plenty of second-hand units really cheap they post, and if you're lucky someone might even be generous enough to give you an older one they don't need. If not, they often have info on government or state programs to assist for those who qualify financially.
Posted 24 August 2013 - 06:20 PM
Lots of overlap between the two, and sleep apnea, or just CFS. They can all feel the same. Don't be brainwashed into thinking stimulants are bad. We're not taking them to get high. As long as your heart doesn't go racing, you'll be fine.
You're unrealistically expecting doctors to "get it" when they haven't felt it. They have to be familiar with a zillion diseases that have overlapping symptoms. Cut them some slack.