Narcolepsy patients
Common Questions and Answers about Narcolepsy patients
narcolepsy
Hello,
Lifestyle treatment of narcolepsy includes taking three or more scheduled naps throughout the day. Patients should also avoid heavy meals and alcohol, which can interfere with sleep. Drugs which have been used for narcolepsy are Modafinil (Provigil) or Armodafinil. You should try the lifestyle measures first before going in for medicines.
This test is the standard test used rule out Narcolepsy and/or Idiopathic Hypersomnolence, as well as to detect sleep architecture abnormalities associated with narcolepsy.
You should continue taking prescribed medications until your doctor gives some other instructions. If you are taking stimulant drugs for narcolepsy such as Provigil, it should be discontinued only under the direction of your physician.
I was diagnosed with CFIDS in 1994. Narcolepsy in 2005. I get basically no stage 4 or Rem sleep at night. Its no wonder why our mind and muscles can't heal themselves. I can go into almost instant dreaming during day (MSLT naps). I haven't been able to get anyone to help me figure out how to correct my sleep cycle. If you get any ideas, let me know. (I am on meds to help sleep and keep me awake at the right times, but it hasn't helped the sleep cycles.
Learning as much about narcolepsy as possible and finding a support system can help patients and families deal with the practical and emotional effects of the disorder, and situations that might cause injury. This link may be helpful: http://en.wikipedia.org/wiki/Narcolepsy
It would be best to see your doctor for definite diagnosis an proper management. Take care and keep us posted.
and proper management.
When I was 10 it was thought that I might have narcolepsy. Although no doctor could ever diagnose this, I suffered for many years and eventually outgrew it. I am now 37 and realize my sleep issues are still affecting my life and are rapidly getting worse. I am not depressed. I do have stress and anxiety in my life, although most of us do. But no matter how much or how little sleep I get, I am never rested. I can take a hour nap at work around lunchtime and by 3pm be falling asleep again.
I was diagnosed with narcolepsy approx. 5 yrs. ago. I haven't gone for another sleep study since,
nor has my doctor seem to ever remember that I have narcolepsy. I am his only patient with narcolepsy,
and if I ever end up in his office, it seems like he always forgets that I have narcolepsy. I don't
believe he has a good understanding of this. Any suggestions. I am in the process of trying to switch
my doctor, but in the meanwhile, I have been more tired lately than usual.
I have had narcolepsy (and sleep apnea) for a long time. I had had three bariatric surgeries over the past 14 years, and my drs have wondered if some of my meds are not being absorbed properly or at the right rate, yet no one has done any kind of 'test' to determine that. I have tried everything possible for my narcolepsy---the ritalin patches, elixir ritalin.......etc, provigil, other meds....and of course xyrem. I take dextroamphetamine daily, even though it does litte...
This is the symptom of a sleep disorder called Narcolepsy. This sleep disorder is characterized by excessive day time sleepiness, sleep paralysis, cataplexy where the person has episodes of loss of muscle function while awake, hypnogogic hallucinations and automatic behavior. You will need to consult your primary care physician, who may schedule you for a polysomnogram (sleep test) to rule out sleep disorders and initiate appropriate therapy.
Hope this helped and do keep us posted.
I was recently told I have Narcolepsy with Cataplexy. I am a 74 year old Female and I am taking 20mg of Ritalin SR in the AM and 25mg of Imipram for the cataplexy in the PM. I get about 2 to 4 hrs sleep and the rest of the night I toss and turn. My Dr. told me she doesn't give meds for her patients to sleep.
I am concerned about not sleeping and then taking Ritalin to keep me awake during the day.I feel my health will be affected. Is this the normal way to treat my condition?
actigraphy, polysomnogram, and multiple sleep latency test. Yo can read more about this through this link: http://www.mayoclinic.org/narcolepsy/diagnosis.html
Take care and keep us posted.
Modafinil is a drug for narcolepsy prescribed for MS fatigue. I am interested in knowing if you have narcolepsy or MS fatigue. Recently I have been experiencing extreme fatigue for which my neuro prescribed amantadine. It is working. The next step would be modafinil but I was told that many of their patients use Ritalin or adderall. Both are addictive so they start with the ones with least side effects first. So far amantadine has been helping get me through my day without crashing.
I am diagnosis with narcolepsy and have had symptoms for 5 years now. I have been taking 500 mg. of nuvigil for over 2 years. Plus, 60 mg of adderall a day. My symptoms have slowed down a little, but I have to take 2 naps a day and not drive anywhere. I have sleep studies twice a year and it seems to get worse each time. Its very aggravating to me! It seems like something would help. I see a team of specialists at Vanderbilt, but I need something else, but what? Anyone have any suggestions?
I have Narcolepsy- My vitamin B 12 level is 235- should it be higher for my condition?
Although the pt has RLS and PLMS, the arousal associated with these do not likely explain EDS- given a short overall sleep and REM latency, consider narcolepsy clinically. I had 156 arousals, 110 spontaneous, the rest due to limb movement. I also spent most of my sleep time in sleep stages 1 and 2, whith REM episodes scattered randomly. I had no time in stage 3, and when I had REM sleep it was from wake to REM with no progression through the other cycles.
Are there any conditions that tend to present in patients with narcolepsy? What is the diagnosis for POTS or chronic fatigue syndrome? Those seem to embody a lot of my symptoms. I am desperate to go back to work and get my life back!
Tests show that 100% of patients with chronic fatigue syndrome and fibromyalgia have an irregular heartbeat. At various periods during the 24 hours, the heart, instead of working happily away going "bump-BUMP, bump-BUMP", every now and again goes "buhbuhbuhbuhbubbuhbuhbuhbuh". The T-wave (the waves are called P, Q, R, S and T) is normally a peak, and then the wave levels off and starts with the P-wave again.
The spinal fluid of most patients with narcolepsy shows the neuroprotein lacking or deficient. The neuroprotein is "hypocretin". Since some people have to have a spinal tap to dx MS, you might as well ask your doctor to test for narcolepsy also. There are other tests but since spinal tap is used for MS you can hopefully test for both.
Symptoms of cataplexy:
sixty to eighty percent of people with narcolepsy suffer from cataplexy.
He now has a considerable amount of central sleep apnea and is being removed from Xyrem to prove that the apnea is indeed coming from the drug. He was diagnosed with narcolepsy, but I have never been real convinced of that because he has always been sleep deprived and depressed. The depression he would not admit until just the last year, and with him it is an "off-limits" subject. Now that he is on Medicare, the cost for the Provigil and Xyrem is more than a major house payment.
Yes, narcolepsy can result in disturbed nighttime sleep. Narcolepsy can only be diagnosed with a multiple sleep latency test during the day (usually preceded by an all night sleep study).
Dr.
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