Narcolepsy???
Posted , 4 users are following.
I've been having sleep problems as far back as I can remember. About 8 years ago I was having terrible RLS, it took about 4 years to finally find a doctor able to control it. I still have bad nights, however, much better. Now that my RLS has improved, I'm sleeping much better. Unfortunately, I'm still having insomnia, I wake several times during the night and I have awful daytime fatigue (even after having a great night of sleep). It is effecting my life in so manyways. I am unable to drive long distances or even work full time because of my extreme fatigue. There have been times that I have been driving and at a red light will nod off, luckily I catch myself and fight to stay awake. It's really scary! I only drive when absolutely necessary. At family get togethers, there are times that I'll be talking to someone and fighting not to fall asleep in the middle ofa conversation. Usually the person I'm speaking to will comment...Are you ok, your eyes look like they're half shut and sometimes I'll start talking about something totally irrelevant to what the conversation is about. I also have had times during the day at home that I'll nod off and in those few minutes I'll have a dream and wake and start talking to whomever it was about like it actually happened (if that makes any sense, lol), it's very strange! I've also had times when I was sitting up eating and I fell asleep and woke with my head in my food, lol. Not funny, it's scary and embarrassing! I've had sleep studies in the past which showed, abnormal sleep structure, frequent awakenings, RLS and no REM sleep. IT seems like Narcolepsy to me, but from everything that I have read, people with Narcolepsy usually have increased REM? Is it possible to have Narcolepsy and no REM??? Sorry for rambling on, thanks for reading!!! If anyone has any advice or similar stories, I would be extremely appreciative!!!! I'm so tired of living like this! THANKS SO MUCH!!!
0 likes, 7 replies
lily65668 kellyzboyz
Posted
Do you know why you don't have any REM sleep? The most common reason for this is medication. I suspect that whatever you're being prescribed for your RLS is knocking out your REM sleep. It's worth bearing in mind too that most of the meds routinely prescribed for RLS have excessive daytime sleepiness as a side-effect. Did your daytime sleepiness start, or get worse, after you started taking meds for RLS, or have you always had it?
The other possibility is sleep apnoea - obstructive or otherwise. Did they say anything about that after the sleep studies?
On the other hand, if you've had the daytime sleepiness problem all your life - before starting the RLS meds - I guess it could be narcolepsy that's being hidden by the drug-induced REM suppression. I wouldn't know enough about that, but it might be worth looking into. I suspect your problem can only be unpicked by a sleep specialist who has access to your entire history.
kellyzboyz lily65668
Posted
Thank you so much for responding to my post. I've always been extremely tired during the day. My doctor never did say why I wasn't getting any REM sleep, however, at the time of the study I wasn't yet taking anything for the RLS. They did rule out sleep apnea.
lily65668 kellyzboyz
Posted
I'm glad to hear it wasn't sleep apnoea. However, it's virtually impossible to have no REM sleep at all unless there's either some chemical influence, or else a neurological condition.
The chemical influence could be any kind of psychotropic drugs. That's antidepressants, antipsychotics, anti-anxiety meds, sleeping pills, mood-regulating medications of any kind etc. Excessive use of alcohol or recreational drugs can have the same effect. I find it extraordinary that the sleep specialist wouldn't comment on the lack of REM sleep in the absence of any of the above.
I could be wrong but as far as I know (I'm a former neuro nurse), the only other cause for complete absence of REM sleep is a certain type of brain lesion. However, I stress this couldn't be a malignant tumour in your case, as these things advance in months or weeks and you've clearly had the problem for years.
I really think you ought to go back to your doctor and insist on revisiting the results of the sleep study.
Cammy5oul kellyzboyz
Posted
Sleep apnoea & ibs cause my fatigue
kellyzboyz lily65668
Posted
Cammy5oul kellyzboyz
Posted
Sorry to read about the challenges you're having
I too suffer from insomnia causing chronic fatigue and narcolepsy type sleeping so I was cornered to adapt my life
I decided it was best for me to take responsibility and not compare myself to others by focussing on what I can do rather than what is causing me distress
I no longer drive as its too irresponsible & happy on public transport unless someone else drives & unable to work full time especially as I used to teach physically demanding classes such as dance Pilates etc
I am planning on working from home as a writer to see how this goes which helps me feel positive otherwise I'd get depressed with how unstable my health is & disappointed with trying to commit to things I am unable to inc socialising
I hope you're able to adapt your life in a responsible sensible way too
kellyzboyz Cammy5oul
Posted
I'm sorry for all that you are going through! I take Aderrall right now to keep me awake but the side effects are very bothersome. Hopefully when I see the sleep specialist next week, he'll be able to figure out what is going on! Good luck with your writing! My sister just had her first children book published, Lilla's Sunflower. It's so exciting! Thank you for the advice, I appreciate it!