Go With The Flow...I like that, Craig..

It seem that I have to go with the flow, with a lot of things in my life, these days.

Saturday I really pushed it, went out with my wife and bought a Lazy Boy recliner. For us it's a major investment because, as you all well know, I spend so much time in it so it must be comfortable and last a long time. I pushed it all right!

Came home exhausted, went to bed and slept to 4:30 PM. Back to bed at 8:00 PM, up at 12-midnight, bed again at 2:00 AM and back up at 4:45 AM. Then we went out for breakfast, home and back in bed by 11:00 AM, up at 4:00 PM, took a shower (a major energy drainer), suffered and back in bed at 9:00 PM.

Here I am "AGAIN" at 3:15 AM up and feeling like crap. I even took two whole Klonopin pills and still only got six hours out of it. Well, seeing my PCP on Thursday as sleep doctor recommended Ambien CR at night rather than the Klonopin so we will see what happens.

Thanks for sharing your experiences because now I don't feel like I'm the only one. Between the chronic sleep deprivation and dealing with the pain and other symptoms, my life right now is like and expensive Kirby vacuum cleaner and sucks with "GREAT" intensity.

I almost got up at 2 to come in the LR and start to do computer things. I am exhausted! I cant sleep. I miss my kitty that I just put to sleep. She used to sleep with me, and now I am so sad! I know this will pass, but the sleepless nights are making me crazy! I just kept nodding off into ten minute naps. Thats NOT rest!

Maybe I need a lazy girl recliner.

Another sleep deprived one...
I havr RLS too and take Requip XL... It helps so much and makes me sleepy. Not for long though.
I am awakened during the night with leg pain from spasms. I take some zanaflex right before bed but it only lasts for 3-4 hrs. I take a other one when I am awakened but it takes a whe to work. I also use a CPAP.
I have been suffering from extreme fatigue as well, so sleeping throughout the day doesn't help for the night.
Just another fun thing to deal with...

OK Guys! Here's my latest update. I saw my PCP on Thursday afternoon. A very hard appointment for both of us because he is a very caring compassionate doctor who is practicing medicine because he likes helping people. I could feel the compassion and his frustration of not being able to really help me due to my neurological disease. He did Rx Ambien CR and a strong narcotic with acetaminophen (sp) for my chronic and increasing pain. He was very clear, even though there is nothing medical science can do for me, he would continue to do what he can to keep me comfortable and treat me as a whole person. Funny, because we talked about doing labs an blood work. I started to laugh and asked him if he was concerned about premature death and he cracked up and said "yes, not that important any more is it? We'll just do it whenever you'd like to see an update." He walked me out to the car and helped me load my power scooter in the trunk, then gave me a big hug. Oh, BTW, he gave me his home telephone and personal cell numbers and his home email address making it very clear to call him anytime. I am so blessed with this PCP.

Well, the point of all this is I took the meds last night as Rx'd. I got really sleepy within about 45 minutes and went to bed looking forward to a full 7 to 8 hours sleep. "NOT!" I was wide awake and up listening to an audio CD book after only 3 1/2 hours. The sheet says it may take a couple of days use to get passed this point. We'll see. I'm not one who is ever optimistic about meds and never have believed in nor had a placebo effect. At this point I would love to even have a placebo effect.

So here I am, totally exhausted, 3 1/2 hours sleep and my major goal for the day is to shave and take a shower. Shaving with involuntary movements is always a challenge and the energy expended to simply take a shower is devastating. As our new post diagnosis family motto goes, "just go with the flow." So that's what I will continue to do.

OH! Let me warn you, since the stroke, not only do I tend to talk too much with details, I seem to run off at the keys too. So I apologize for the long postings. But, you know what? If you have a problem with this, you have the right to get counseling. LOL!

Hey Craig...I love reading your posts...they're so conversational, I feel like I'm listening to you! Don't worry about the length!

I tried Ambien and it did nothing for me! My neuro was considering giving me Clonipan, but I don't want to go on any drugs...I can sleep, just not through the night. I make up for it in the morning (and sometimes the afternoon).

It sounds as if you've found a very caring doctor...bless his soul. I'm glad for you.

Take care of yourself, and keep us posted about how you're doing and what the docs are helping you with...

Not being able to sleep at night, and wanting to pass out in the afternoon after a walk around the house was really the most bastardly of my symps. It sucks, but meds are working for that.

Hey Eric, I have a new found respect for you from reading the bike ride post.

I can take Klonopin and Hydrocodone, sleep hard for maybe 2 to 3 hours, up watching TV for 2 to 3 hours, hit with waves of exhaustion and back to bed for a couple of hours. That's the closest I come to a sleep/wake routine.

I can feel pretty good but only for a couple of hours, if the previous circumstances are right. I can feel pretty good, go to dinner at TGI Fridays and have to seriously crash from total exhaustion once we get home.

Bad news guys! Evidently I've progressed to the point my PCP feels I've exceeded his area of quality treatment. He called my wife at work last Monday morning at 7:45 AM and discussed sending me to a pain management clinic. He feels I may be able to have fewer meds (15 Rx'd now) and a higher comfort level with their help. So, I'm in the process having records faxed, pre-appoint evals by the doctors to determine if there is any further treatment they may provide, short of knocking me out and/or stupor all the time.

We will see. Many times the pain is so bad it brings tears to my eyes, but what can you do but deal with it?

I have found that medicated sleep isnt great sleep. natural, I am tired, let me lay down sleep is what really recharges my batteries. The less meds I take, the better I feel. Pain management will do PT and OT and relaxation and yoga and other stuff to help suppliment your routine and hopefully you can get more of what your body is supposed to do naturally.

If you cant walk, they sell those bike rider things that you can do while on the couch. Lift cans of soup and get those muscles burning. do streches or chair exercises. stretching out those muscles really helps cue them into the mode of releasing the toxins they hold onto. Lactic acid can cause all sorts of cramps.

I am hoping to find a better rhythmn than I have currently myself. I am just hoping to do it with less meds.