Narcolepsy quality of life

Common Questions and Answers about Narcolepsy quality of life


5496522 tn?1368819256 Hi Everyone, I'm new to this forum (actually, any forum), and I was hoping to get some input from anyone who has suffered from complications post decompression surgery. It all began 2 years ago, when I hit a tree skiing. I suffered a severe concussion, but bounced back pretty quickly from the accident. A few months later, I began having neurological issues that were pretty serious, and after going from one doctor to another, I was diagnosed with Chiari.
2137079 tn?1335983532 I have to say I can sympathize with you as I am experiencing less than great quality of life after only one round of triple tx that was unsuccessful. I'm contemplating doing battle again but not with interferon. The fact that you completed three rounds in five years is a testament to your strength and determination. Sometimes I feel really P.O.'d about everything I have put my mind and body through only to be told I may be suffering from depression?!
768044 tn?1294223436 I had difficulty answering this, as my migraines are getting progressively worse. However, I chose "Not able to work...." as that's the best my migraines get. I then get worse from there.
6653958 tn?1395759593 Ive been cotemplating the value of life in general, do you think the quality of life is more important than the quantity of life ?
Avatar f tn symptoms disappeared with some quality sleep over time. A diagnosis of narcolepsy can radically affect your life in regards to driving license rights and insurability. I wouldn't accept that label until there's nothing else to do to help your symptoms. Then after that, it is what it is.
Avatar f tn My neuro is a goood doc even to the point of another doc thought i had mysthenia gravis so i was tested to rule out all doubt from my other docs, he will not leave any stone unturned to assure me some quality of life. Finding a doc who is highly up to date with N is difficult and just because a sleep ctr treats sleep disorders does NOT mean they are well versed in Narcolepsy.
Avatar n tn Once you stop looking for a diagnosis and embrace management, I am not one for putting on a brave face and fighting to keep life the way it was before pain hit. You can have more control over your life, arranging it to encompass your limits, once you start building your own management plan...and I caution against letting a doctor do it for you, or try to push you to do more than you absolutely WANT to do.
Avatar m tn What are a professional's thoughts on someone in pain with zero quality of life? Is there any advice that I may not have heard that may ease my mind? I have had chronic nerve pain for over 5 years. It affects a very sensitive area of my body which seems to make the pain worse. The pain is vice-like, although I do have shooting pains when I "exercise". The pain seems to make me feel queasy, but I have digestive issues so this may be in my mind. I am 23 years old.
Avatar f tn If I was in your position, I would ask my physician for a referral to a sleep clinic. It may Narcolepsy, Obstructive Sleep Apnea due to enlarge tonsils. This is why it will be helpful to get a sleep study done so it can be more accurate to what it may be going on.
Avatar f tn The vast majority of doctors have absolutely no idea what it is or what it looks like, and no routine lab tests, MRI, CT scan, x-ray or anything of that nature will detect it. 75% of people with narcolepsy never get diagnosed in their lifetime. I was tested for epilepsy, migraines, MS, all kinds of things. But nope, it turned out to be narcolepsy!! Get seen by a sleep center!
Avatar n tn Narcolepsy? Could be. Part of the process in making that determination is assessing for any other sleep disorders that could be causing the excessive sleepiness. Anything that interferes with the proper proportion and cycles of sleep stages can result in sleep that is not restful or restorative. Some medicines can be the culprit. A couple common sleep disorders are sleep apnea and limb movement disorders. An overnight study in a sleep lab is the first step in finding answers.
Avatar n tn It is caused by a dysfunction of the brain mechanism that controls sleeping and waking. If you have narcolepsy, you may have “sleep attacks” while in the middle of talking, working, or even driving.
Avatar m tn s that will help you improve your quality of life.
Avatar m tn Hi, my son was diagnosed with narcolepsy with cataplexy at the age of 16 and he's been taking Modafinil and Effexor. He, like you, has gained a lot of weight because of the narc., not the medicine. He found the Mod did help his appetite. I wouldn't agree with Ritalin if you wee my child. Mod is very expensive but if your test results warrant it, your ins will pay for it with a small copay. Good luck.
Avatar m tn I don't know what others experience but during an A Fib event, my quality of life deteriorates completely. I did read that large doses of Vitamin D can cause arrhythmia so I stopped taking Vitamin D and the events have decreased dramatically in frequency from about 2/week to 1/month and intensity and duration. I was diagnosed with A Fib about 1 year ago but have been having what I thought was tachycardia for years but maybe only 2 times/year.
Avatar f tn Yes, I have heard of narcolepsy. After 27 years of complaining to doctors of excessive daytime sleepiness and 4 years of scary calaplexy attacks (loss all my muscle tone and can't move), I was diagnosed (finally) with narcolepsy. So, I'd love to share with others who have had to cope with this!
Avatar f tn I know a few people who have told me of their daughters with narcolepsy who graduated high school (one at the top of her class) and college and have careers. At first, I was afraid that narcolepsy would hold me back, but I'm managing, and finding ways to do the things I really love and do them well. There's no need to be heartbroken. Go to a doctor, do your research ( especially before you start medication ), find ways to be successful, and get lots of sleep. It'll work out, really.
Avatar f tn Narcolepsy can only be diagnosed with a multiple sleep latency test that is done during the day. Dr.
Avatar f tn Sleep test normal, the MSLT shows two instances of short onset REM--diagnostic standard for narcolepsy. Interpretation: Nonconclusive due to improper protocol--patient not given any break between naps. (As I said above he blamed her for invalidity.) Recommendation: Repeat MLST as per protocol. What else--another re-test! None of this gives me confidence. If there are pre-conditions to tests shouldn't we be told to avoid unnecessary testing?
Avatar m tn Without one, diagnosis and treatment will likely be a lengthy process of trial and error while life passes you by. Been there, done that - wish I could get the wasted years back. Hope your minimal insurance will cover one.
Avatar f tn This problem becomes unbearable around the first part of the summer and the late part of fall. There is something about the quality of the light that causes a seizure almost everytime I go outside, even with sunglasses on. I have read in these forums today about covering one eye, and special glasses that block glare. I will definately try those things.
Avatar n tn t realize at the time but he apparently checked my blood for a Narcolepsy gene in which the result says of the 6 possible genes I am positive for 4 of them????? I did a sleep study in which they had me to the 5 naps 2 hours apart however according to the results I never made it into REM sleep but my Neurologist also told me they should not have done the test because I was on Zoloft and it impairs the results?
2144251 tn?1357326118 Hey people from Limbo Land :P I'm Summer and I'm 17 (18 in august! whoop!) and i struggled very hard for 9 years from... DUN DUN DUHHHH NARCOLEPSY WITH CATAPLEXY. My specialist said i have the most intense case he has ever seen in such a young person, in his practice. he is like, 58 or something. so yeah. I have a really hard time with all of those meds I'm STILL WORKING ON ever since november of my official diagnosis in 2011.