Fatigue/sleep disorder -- a vicious circle (and when medical professionals disagree!)

[aspen]

I started this journey with trigeminal neuralgia, then later on right side weakness and a sudden sleep disorder. The sleep disorder is pretty constant; everything else comes and goes. Later on I started with fatigue -- the kind that makes your brain, muscles and speech stop working, also in episodes.

I finally got in to see the respirologist last week who thinks it's key that I get the sleep disorder under control if possible. I agree -- sleep deprivation is making symptoms much worse (imo). I'd like to hope it's causing everything (since I'm in limbo) although it started later on ... .

So I'm on a sleep training program, night two. I have to go to bed at 9:30, and set my alarm for 3:30 (I haven't managed to sleep that long yet, but he said it would take a while). If I wake up I have to GET up until I'm tired again (doesn't happen -- I don't fall back asleep). When I get up at 3:30 I spend 30 minutes in front of one of those full-spectrum UV bulbs (LiteBook). During the day, I can't nap, or EVEN LIE DOWN. Bed again at 9:30.

Problem is ... I'm supposed to be using energy conservation techniques as per doctor/PT. I have to rest every afternoon in order to function (I generally can't sleep but I do lay down). The fatigue isn't too bad right now, thankfully, but despite that by last night with no rest time I had cotton wool brain and difficulty talking/swallowing/getting up from chairs yadah yadah.

The respirologist said if I can push through the next two weeks things will "likely" improve considerably. I.can.do.this. But he also said I'm going to feel a lot worse before that happens.

And those of you who know me understand how tired I am of the word "likely" lol.

Anyway, just a vent. On one hand I wish it all wasn't so complicated. On the other hand, the advantage of being in limbo -- no one is saying that things are "just ms" so everybody is doing their best to help the different areas I have issues with. And whether it is or isn't, hopefully this will work .

Just wish each strategy didn't seem to be working in opposition ... .

[bree2013]

Hi Aspen,

Lack of sleep definitely magnifies the negatives. As you said, at least testing is being done to try and help with your sleep disorder. Interesting going to bed at 9:30 and up at 3:30.

Your respirologist doesn't want you to sleep or lie down during the day, but what about just sitting down? Put your feet up and read a book or watch TV. Your body will be conserving some energy without napping or lying down. Maybe limit that amount of time so you don't conserve too much energy that may interfere with your sleeping. I assume you're mobile -- could you push yourself to include extra walking in your day? Even around the house if the weather isn't ideal.

I hope you can get through the next two weeks and notice improved sleep and decrease in symptoms. Being in limbo is hard, but at least your symptoms are being addressed.

Good luck and keep us posted,
Bree

[KatW]

Aspen, sorry that you are having sleep issues. Insomnia is one of my worst symptoms. I try to follow the sleep rules. I don't nap during the day and I don't have a TV in the bedroom. I exercise and don't have caffeine after 3 pm.

I use medication. The medication helps and I get sleep. There are also lots of medications for symptoms that have drowsiness as a side effect and help with sleep too (Neurontin, baclofen, amitriptyline). Good luck and I hope things improve.

[aspen]

Kat, I did use amitriptyline for a while -- it worked well, however I kept adjusting and having to up the dosage. Eventually the side effects were too much and it wasn't helping me sleep anymore. none of the other meds worked -- because it turned out I had sleep apnea and I shouldn't have been taking them! I can't take neurontin ... I was waking up with a racing heart rate and finally took it during the day -- it makes my bp drop suddenly and drastically.

The respirologist said (and I agree) that sleep meds are bandaids .. something completely messed up my circadian rhythm, literally overnight in March 2013, and he wants to see if we can address it.

I.can.do.this!

Bree, re: 9:30 and 3:30 ... I wake up at 2-3 and am done sleeping for the night, plus if I'm woken up earlier, I can't get back to sleep. So I've been going to bed pretty early so I can get as many hours in as possible (weirdly, if I try to go to bed later -- I don't sleep past 2 ever!)

Hubby informed me that I had flailing limbs again last night ... I need this fixed ... . Haven't had that since before getting my cpap machine and it's working fine ...

[minnie76]

Hey Aspen!

Well well.... we have so much in common... except for the sleep issues. I'm so tired at night I fall asleep instantly...i actually feel as if my body is releasing some kinda chemicals cause I feel like I'm drugged or groggy during the night and when i first wake up.

I feel so bad that you're going through this, sleep helps us heal.

hubby has a C-pap machine, it's annoying but helps.

sending you hugs and encouragement!!

minnie76

[aspen]

Awww, thank you Minnie .

[rdmc]

Hi,

Did you have a sleep study? I was just wondering how they diagnosed your sleep disorder.

[aspen]

Yes, I had a sleep study done, RDMC. I have central and obstructive sleep apnea. With the CPAP, my AHI is very low now -- however I've had so many things over the last year messing with my sleep (apnea, fasiculations, body movement, periods of interruption due to pain) that my sleep cycle was messed up. I would sleep a bit, lay awake for ages, sleep a bit, lay awake ... etc.

I had to call the respirologist back -- he had told me to do this for two weeks. He said it would get worse before it got better. Oh, was he right. Once I started using alarm and light, I was only sleeping 2 hours a day BUT other than messing up last night (badly timed caffeine -- hope it doesn't set me back) I'm now sleeping 5 hours in a row (I think)!

To get there, however, I had to start waking WITH an alarm -- three days my alarm was set for 1 a.m. and I was up from then on (half an hour with a "LiteBook"), all day. A child asked me if zombies were real -- I suggested that yes, indeed they may be because one just made their breakfast ::tongue.

My other symptoms are way worse because I haven't been allowed to rest/nap/lie down during the day -- but he said the benefits of proper sleep long term will improve the other areas as well and just to push through. For 7 days I barely functioned past noon ...

I'm 10 days in now and I can see that this might, in fact, work .