From the article: Sleep and MS
I would love to get a good night’s sleep. Just once. My MS-related fatigue is so terrible some days that I will fall into bed, exhausted and grateful that the day is over. Then I will lay awake and worry that I am not sleeping. The other option is to fall asleep immediately and wake up at 2 a.m., only to feel sleepy again around the time I want to get up. I have found that exercise helps with this cycle, so am resolving to try that again (although it is hard to get enthusiastic about it when I am tired). What about you? This is your place to complain about sleep thieves and share any tips for getting enough rest.
Share Your Story and Tips
Dark Dreams
- Of late I seem to always have bad dreams involving former work issues (real or imagined) assignments to do, goals not done, etc. Always dark. Caused by MS or Copaxone at night?
- —Guest Bob
Sleep MS
- I have had MS since 1992 and I have yet to find any thing that helps including medications like Ambien. I wake-up atleast six to seven times per night and when I do sleep any sound or movement in the house wakes me. So far the only thing that works is to live with it and try not to go to sleep while driving or near dangerious places.!!
- —rmartin1625
what to do with RSL
- I am up right now its 2:12am can't sleep due to my RSL; It's getting worse. I have had this problem since the early 90's don't know what to do
- —sharonflanery
Sleep or not to Sleep!!!!!!!!
- Hi Julie I’ve read your stories and shared comments with interest. I admit to being side-tracked with the CCSVI treatment as I’ve not heard about it in Queensland. But on the issues you raised about sleep: • I do dream and feel that when I’ve dreamt I’ve had a better sleep. I used to keep a pen and paper next to my bed and write details down. All pretty bizarre. • RSL is a nightmare which gets worse when the weather gets colder or when I need to take more calcium/magnesium supplements. • I get night sweats and have done for many years. I thought I was going through menopause in my mid-30’s. I’m now 47 and living in a warmer climate. I have to sleep with air con in the summer. Then I’m ok and I don’t sweat. • When I have my bladder under control with botox I don’t have to get up for regular loo visits. • After years of insomnia I do all the sleep hygiene things you mention including wearing socks to bed! Even if I wear nothing else. After moisturising my feet – because they f
- —Guest Irma
RLS
- Keeps me from falling asleep and staying asleep. When it starts, i immediately walk to the kitchen, drink 1/3 glass of milk and eat half a graham cracker. Most of the time it works. Otherwise I take half a 2 mg tablet Valium. That way very little hangover.
- —Guest Reaben
RLS AND CCSVI
- How appropriate. Having just undergone the liberation procedure, one of the things I noticed an almost immediate cessation of the jerking of my leg. I've been suffering with it for a number of years and it just stopped...another benefit from the CCSVI procedure...sure looks like it!
- —Guest bob
Uninterrupted sleep
- I used to have insomnia pretty bad, but it has been better lately, I think due to me getting more exercise (yoga is the best for me). However, I am a light sleeper and it drives me crazy. I wake up as the slightest sound, such as the sound of my husband's slippers on the carpet. Yes, it is so annoying. I wake up a lot, and thankfully I usually fall back asleep but I would just like to not be so sensitive. My husband had to move to another room because he not only snores, but also gets up several times a night (just his regular routine). I even hear the nocturnal animals walking on the ground outside my window (if only my hearing was that good during the day - geez, I have trouble hearing during the day but at night suddenly I have extra-sensitive radar ears). I know it's not as bad as some people, but it gets old night after night after night.
- —Guest Sarah
MS has severly damaged my son's brain
- I have not heard of any other M.S paient that has mental disease like my son.His doctors at M.U.S.C in Charleston will not see him again because he will not take his injections or meds.He gets upset and denies he has M.S No doctor in Columbia can heilp him and the M.S clinic in Agusta Ga. will not except his medicaid insurance.I am waiting on the S.C. medicaid office to change his insurance back to regular medicaid.He makes off the wall comments that does not make any sense,yet he can sit and play scrabble sometimes.He can't tolerate the heat and walks outside in 25 degree weather.I need help.I m so worried i can't function normal myself.What can I do i don't have the money to travel to another state and he does not have the insurance a M.S. clinic will except.Denakyzer@Yahoo.com
- —Guest Dena Kyzer
Sleep and interference
- I have had MS for 5 years. I have problems with legs jerking, tingling and just plain out uncomfortable. Also waking up all hours of the night barely getting 3 hours at a time. But a friend told me about 'soap" and her leg cramps. I thought she was out of her mind and need psycotherapy and shock treatment! She told me to take an ordinary bar of soap and shred or grate it into small pieces and place between my mattress and fitted sheet. Spread it all over in the lower portion of my bed where my legs are. Well just to prove to her she is crazy...I did it! And I have to say I havent had a better nights sleep in years! My legs dont cramp and if they do it is very minimal!!! I dont know how, why or what the soap does...but for $2.00 every 3 months for a bar of soap, 10 minutes of time grating it...it effect it has on my sleep is PRICELESS! Not sure if will help everyone but it couldnt hurt. Good luck to all of you and I wish you the best.
- —Guest Kathy
sleep problems
- I had the worst night sleep ever because I took my Provigil (for energy) too late along with coffee. It was absolutely a miserable night. Today is not too good either!
- —Guest dseelig
Poor sleep
- I often get an edgy, jump-out-of-my-skin feeling when I get to bed. I drink very little coffee and never after 2 or 3 pm. (I've cut down on preservatives. additives and artificial sweeteners and think this helps with the jumpy, edginess a bit.) I generally don't sleep through solidly, waking up several times a night. Sometimes I get up from bed and go out on the couch and can sleep there. This may be partially to being alone with no disruptions and also due to a different sleep position. Sounds at night greatly disturb me and cause a startled reaction which causes my adrenaline to kick in. I reduce this greatly by always wearing ear plugs which do help to keep out jarring noises. I can still hear the alarm and a muffled version of our dogs' alerting barks, so I feel comfortable using the plugs. Although Lunesta helps me sleep, I try not to take it too often because it does contribute to brain fog in the morning.
- —Guest Wendy
Bi-pap has saved my life.
- A sleep study was ordered because I was so tired all day. It took 3 studies to find I stopped breathing average of 120 times an hour, sometimes up to two minutes not breathing. Half of that was due to apnea and the other half to "unknown causes" then my MS doc said that was probably due to the MS. Do we know how many brain cells die when we don't breathe? No wonder I have lacks of cognition. I still am not used to the machine that breathes in and out and for me if I forget to breathe, and has warm moisture swishing through. I have the thrush and am allergic to the mask itself (I found some cotton covers). Say a prayer for me please.
- —Guest JerryNell
CCSVI and Yersinia enterocolitica
- Hello, when I look to the possibility of an infectious link to yersinia enterocolitica in the intima (vascular wall of small veins), it seems to me, the whole history is understandable: Yersinia enterocolitica is able to initiate an intracellular infection and it suppresses the immune reactions. So it is possible the bacteria can innitite a "silent infection" of large and disseminated areas in the vessel walls as long the special defence against the bacteria is not installed in the immune system. Later whe the immune system becomes knowledge about the Yersinia it can start better attack against the infection. But only there, where it knows about the bacteria. If an infectet cell becomes an immune presenting cell, it will be atacked by the immune system. But yersinia enterocolitica can break the process of phagocytosis! And so the bacteria, or infectious parts of it, can be freed again. Than the can link to other immune presenting cells (an can free possibly other bacteria!). MS starts
- —Guest haschu4u
Inclined Bed Therapy IBT useful for ms
- I have spent nearly 17 years researching posture and neurological conditions. Flat bedrest comes out on top for inducing many symptoms. How many people wake up worse after a "good nights sleep"? If you want answers to your sleep related problems and ms symptoms you shoulg google andrew k fletcher or inclined bed therapy to learn how simply tilting your bed could have a profound positve affect on not only your sleep related problems but a direct positive influence on your ms symptoms and relapses. Who told you sleeping flat was safe?
- —Guest Andrew K Fletcher
amitrypteline for sleep
- I don't battle to fall asleep,but wake up to use the loo at about 2-3am,then I cant get back to sleep.I toss & turn,then when I eventually get to sleep,the alarm goes off & I'm exhausted.I take 1 amitrypteline every night at 7pm & 2 hrs later I'm out for the count.
- —Guest Thielke
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