This Is MS Multiple Sclerosis Community: Knowledge & Support

I know this probably belongs in General Discussion, but I always like the feedback from here for me since I now have stents put in and need to come from that frame of reference, ie no MS drugs messing with me. As most MS'ers, sleep has always been somewhat tricky. Moreso in the beginning, but has crept back in as the bladder has gotten worse over the years. Despite night time cathing (which has been a Godsend) I still will wake sometime usually around 3-4:00am to pee again, and then can only peel off enough, thanks to Detrussor Sphincter Dissynergy, to get me hour long chunks until wake up time.

So lately I've taken to cathing again at the first wake up time and usually pull out about 300 ml and can then sleep to the alarm, and even past a bit on the weekends. My next strategy is to try an anticholonergic with a short half life (Not the LA stuff since it's long acting and contraindicated when you can't empty your bladder) to see if it keeps my OAB quiet until I want to get up and then I'll just cath it out in the am. I hope that works, but I digress.

What I really want to talk about is what happened this morning, and every morning where I can actually sleep in. Quick point of reference. 6 hours is like 8 to me. It just is and always has been. Even before MS, I am alert and awake all day until bedtime if I get 6 good hours with maybe one short wake up thrown in there. What has been happening is that if I sleep in on the weekends, like 8-10 hours of lounging and sometimes actual sleep, I feel like crap for most of the day thereafter. My legs feel weak and I feel much more unstable than during the week. This would seem contradictory to the recuperative powers of sleep. I always think "man, that was awesome, it's actually light out!" when I sleep in, but I always feel worse than when I wake up at 6:00 in the morning!

Does anyone else experience this? And if so, would you have any idea why when I get more sleep than normal I feel worse well into that day? I'm thinking something along the lines of taking "too long a nap" which has always been hard to wake up for me, but it's not a nap, it's just an extra long sleep. Maybe it's the same type of thing, but any feedback would be greatly appreciated. Even just an "I get that too" would make me quit wondering if there is something weird going on.

Loobie... I can't answer your question about sleeping too much since I have primary insomnia. I take 3 different medications in order to sleep. It is interesting to me that you have a sleep problem. My first MS symptom happened in July 2006 when my vision went double and I stopped sleeping. I literally couldn't sleep. I had an MRI and went to my MS neuro. He said I possibly have MS because of the 40 some lesions. I asked him if my sleep problems had anything to do with MS and he said NO.

It took me another year and more symptoms and more lack of sleep to get the courage for the lumbar puncture. Finally in January 2008 I got my MS diagnosis. AND STILL MY NEURO SAID THAT MY SLEEPING PROBLEMS HAVE NOTHING TO DO WITH MY MS.

Sleeping and waking are controlled by your brain. So why can't sleeping problems have anything to do with MS ??

Yup,I have the same thing with sleep.Longer sleep=worse feeling all day

I'll say this as just my opinion based on this one thing, but your neuro. is an idiot. I've been told by the word go from my neuro., "having problems sleeping?". Hell, it was on the cover of one of the recent NMSS or MSFocus magazines! He needs to get current. Just google it, there's loads of information about how MS affects sleep adversely. As my disease has progressed, however, I find it easier to sleep if it wasn't for the damn bladder.

Kinga, thanks for that. I was thinking I probably wasn't alone in that, but I just used to love to sleep in!

Hi Loobie,

It’s a bit off topic, but along the same lines.... many years ago when I was still able to visit the Gym regularly, if I worked out really hard (almost to the point of exhaustion) I would have bags and bags of energy in the hours afterwards. So if I had a busy day planned, I’d need a trip to the Gym to beat myself up with Exercise in the morning so that I’d benefit from the after-effects and have bags of energy for the rest of the day. Whereas if I rested and did nothing before my busy days started, I’d be absolutely washed out for the whole day afterwards. Weird isn’t it. I’m sure someone with more brains than me will come along soon and post a theory as to how this can be explained in CCSVI.

Have you tried LDN for the bladder? Works for me....

_________________
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

Chiming in here -- MS most definitely affects this area.

Same also. I wake up 6:30 and all's ok. If I oversleep until 10:00 or even 8:30~9:00 I feel not so good during the day.
I go to be about 23:00 regularly; very rare exceptions (new year eve )

Man after my own heart. 8-10 kills me for the day, 6-6.5=just right with a short afternoon nap tossed in for good measure. Weird. I feel much more alert on 6-6.5 than the "never woke up" feeling from 8+. Think it's an age thing too, just need less of it. Ask grandma trying to wait me up for 7 am period in high school, she used to toss water on me and even THAT couldn't get me up lol.

Always good to hear from ya bud.

Mark.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Hey Mut,
I am on LDN now (2.5 months in). I had to start taking it in the morning as I was getting no sleep at all and it was to blame for the 1.5 hours I got before a big day the other day. It hasn't affected my bladder at all yet. Plus, as I said I have to take it in the morning now.

There is a caveat here. I quit smoking weed about three weeks ago. That stuff was not only great for sleeping, but also for bladder calming. However, it had started to zap too much of my leg strength, so I quit. I don't think starting LDN at the same time you quit smoking weed is a good idea. I had smoked really and truly every evening for about 15 years. I was NEVER out of pot and it has been a harder withdrawal than I thought. It's SO much stronger than it used to be. Guess what some of the side effects from quitting weed these days since it's stronger are? Insomnia, vivid dreams, physical tension. Sounds familiar with starting LDN huh? So I think after about two months post marijuana, I'm going to start the process all over again and see how it goes. I just think I did the LDN a disservice by starting it as I was quitting the MJ. I really don't want to start smoking it again either. But if I can't solve it after some good amount of time, I may take it back up again, but literally only immediately before retiring so I don't notice its' affects on my legs. However, I do think that some of the leg weakness was creeping into the next day.

Anyone finding same problems with inclined bed therapy?

Andrew

Lew -


I think you just answered your own question. I was ready to post something on the other thread you started but I wanted to research withdrawal from the weed. My suggestion is to email Skip at Skip's Pharmacy -- he always responds to questions. I take the LDN at night and I sleep through the night from 10:00pm until 6:30 pm. I know that my body needs 8-1/2 hours of sleep at night. If I get less, I feel like crap -- and I hardly ever get more 'cause I am not one to just lay in bed trying to sleep more. My thought is for you to "listen to your body" -- trust what it is trying to tell you. Maybe 6-6-1/2 hrs is enough sleep for you --- and, it might be your normal body clock without MS in the equation.

Sweet Dreams

Sharon

I started to take my sleeping pills 13-14 years ago. I did not know I had MS at that time. It is enough if I take the half only.
Of course, I was trying many times to stop, with or withou inclined bed.
I am sorry it is still not possible.
So I continue to take my sleeping pills and I keep trying to stop the pills.
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

All in good time Erika

Remeber reverting back to a flat bed for a week as you did will set you back at least two weeks of I.T.

Andrew

This was a conversation I had with my wife on Saturday after sleeping in until 10 and feeling like shit all day. Got up Sunday at 6:30 after 5 hours of sleep and felt good (still sleepy but not "fatigued" and headachy).

I wonder if it has anything to do with how the blood flow works. As I understand it (please correct me if I am wrong), when standing or otherwise upright the return flow from the brain is primarily through the vertebral veins and the IJVs can even collapse. Conversely the IJVs take over when lying down. Just speculating, but if there is a problem with the IJVs, I would think that most "damage" due to a hypoxic state would occur after lying down for an extended period of time.

http://www.bentham.org/cnr/openaccessarticles/cnr%205-4/006AG.pdf

Hey Loobie,

Well done for quitting the MJ. I’ve tried ye olde medicinal herb a few times but couldn’t stand the way it seemed to unplug me so much. Time just stood still and I hated it.

I wouldn’t be surprised if much of what you talk about was more influenced by the MJ than the LDN Hope it goes well if you do decide to pick it up again though.

I think LDN is also responsible for some of my leg weakness too, but this doesn’t outweigh the positive affects it has on my bladder.

Mutley.

_________________
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5