Why aren't you sleeping?

[MSwhileOverseas]

Well maybe it's because the ringing in my right ear is so loud it's painful, or maybe it's because my right face from the middle of my nose down to my chin over to my ear feels like I just left the dentist office after being numbed for a procedure, or maybe it's because my entire left side from my chin down to my toes feels like pins and needles, or it could be because my left calf muscle keeps cramping not to mention that most of my left side muscles are so tense and wont relax, or maybe it's because my legs won't stop jerking or could be because every time I get startled by a noise, including your deep breathing, I get a shocking sensation that surrounds my entire head goes down my neck and ends in my fingers.

Trust me dear husband, if I could sleep I would be!

Sorry for he vent, I have an amazing supportive husband who knows I need sleep but just doesn't understand why it can be so hard to get sometime!

[Thinkimjob]

Strange old world. Used to be able to sleep for hours of an afternoon, then settle at midnight. No more.

Used to "invent" a serial killer murder/ mystery story, starring Hercule Poirot, never got past the second death, and ooh sleep. Not these days.

Drugs are, but probably aren't, your friend.

[DianeD]

Ah sleep!

I've evolved around sleep. Started out fatigued and tired, could fall asleep easily. Then could not sleep at night; often fall asleep at 5:00 or 6:00 a.m.! Could sleep all day, but take Nuvigil, which helps but not as much as it once did.

Currently I am totally out of sync as I am awake at night, want to sleep during the day. If I fall asleep (usually with the aid of a sleeping pill) then I stay in bed till noon or even later. That is still only 5 or 6 hrs of sleep.

I'm looking forward to when my condition turns to sleeping at a normal time and actually being awake for an entire day.

Diane

[tommylee]

Constant pressure from head to toe and a crushing hug around my mid section.
I don't sleep as much as I pass-out from exhaustion for about 4-5 hours at a time.

Sleep does not come to me without heavy sedation.
That leaves me foggy the next day so it is a bad trade.

[sbates]

I had several things that kept me up. I had what seemed like sinus pressure in my ears and eyes both. I had the occasional ringing but not all the time. I had dental pain and jaw pain. I had horrible tension and muscle aches in both my legs. I would get chest pain and shortness of breath from laying down flat. Then I would get really bad anxiety and my mind would race. My fiance would get irritated because I would flip flop around trying to get comfortable. I was irritated because I was beyond exhausted but couldn't sleep.

So.....when I saw my neuro Monday she gave me tons of meds. I was against taking so many at first but I have found the right combo for sleep. I take clonazepam, baclofen, and neurontin about 30 mins before bed to give them time to work. It doesn't make the symptoms go away but makes them very much more tolerable. I didn't want to add more meds to what I already take but if it works...why not? I've slept better the last 2 nights than I can remember. None of these meds make you groggy either I still wake up tired but at least it's not the pure exhaustion I feel at night. The right combo of drugs really can be your friend.

Quick question- I am recently startled by loud noises too. It makes me jump and my heart starts to race. Any idea what causes that? I don't get the shocking sensations like mswhileoverseas does but I just find it strange....

[Cat Mom]

OK, I'm going to sound like I'm off my rocker for saying this... Fatigue is my biggest reason for not sleeping. It sometimes interferes with falling asleep and also, getting back to sleep if I get up in the night.

Ya know? That heavy limbed, vibrating feeling that shows up when fatigued, can't find an acceptable position for all 4 limbs at the same time.

Thank God it's not like that for the most part... I'm an old crow when I don't get enough sleep.

Jen

[KatW]

Oh my! My husband and I discuss this frequently. He falls asleep very quickly. He mentioned that if I can't sleep that I should get up and get up and work on something until I get tired. Hmmm. He does not understand the concept of winding down. I also take several meds to sleep.

I have an exaggerated startle response or startle reflex also. Loud noises and sudden movements cause me to jump and sometimes scream. I try to control it because it tends to affect people around me.

Back to the sleep: are you on any DMDs? I find that my DMD raises my resting heart rate making the insomnia and startle worse. I take meds for that too.

[wendya432]

Oh my, I know the feeling. You could be describing me!

As far as the startle reflex. From what I understand, it's like having hyper reflexes in your knees. Part of the upper motor neuron system. Not going to get into details since I'm foggy on it, but you could probably look it up online and read more on it.

I end up staying up way too late because I can't just lay there tossing and turning. But then I'm exhausted in the morning. Lately I feel like I'm on so many meds that when I do fall asleep I at least sleep hard and sleep through the night, which is a nice in a way.

But yeah, hubby doesn't get it. And actually he sleeps with a CPAP and the noise from it, along with the air blowing on me from it when he's facing me, just adds another thing that makes it hard for me to sleep.

Sometimes I just give up and come and sit on the computer for an hour and try again once I can't read anymore! lol