Sleep-wake cycle disorder anyone?

[jumpinjiminy]

I think this is one of my worst problems, and probably contributing to the fatigue or caused by it. It's a real chicken or egg, and hard to tell which comes first. My sleep cycle gets so off, it's shameful. Embarrassing, and shameful. It screws up everything in life.

I've tried every sleep hygiene suggestion, benzos, self-hypnosis, relaxation therapy, reading, forcing myself to stay awake, and still can't seem to get to sleep on time. I'm at a loss. It's been the root of so many failures in my life, it's what makes me feel like giving up on trying to improve my lot. Who would want an employee that can't stay on schedule? A real conundrum.

[MSW1963]

I suffer/ed severe insomnia with the onset of my last big exacerbation nearly 10yrs ago. I started a new DMD and 4 months into the new therapy, I started sleeping all night. I was near tears when reporting it to my MS Neuro.

I'm not sure you are describing insomnia though.

Have you ever been evaluated for a sleep disorder?

Narcolepsy is something that comes to mind when I read your post.

[jumpinjiminy]

I did have a sleep eval. It took me until 1:00 to fall asleep and I slept for 3 hours that night. It said my sleep architecture was grossly abnormal and in particular, there was no REM sleep and very little stage 3 sleep.

I've since gone off meds that interfered with REM sleep and have had some improvement with daytime fatigue. But, I still have a lot of trouble falling asleep when I should be. I can sleep at the drop of a hat on many days after having had a few nights in a row with 4 or less hours of sleep.

The delayed sleep onset and lack of REM sleep ruled out narcolepsy.

[Shiela]

Sorry you are having these sleep issues jumpinjiminy. I had this for almost two years and nearly drove me crazy.

I believe, in my case anyway, it had to do with the reticular formation in the brain which is responsible for sleep/wake cycles. I could go all night long with no sleep whatsoever. Tried everything I could get my hands on, alone and in a cocktail. At the most I could get 2 hours. The sleep hygiene didn't work at all. I believe that was because it is a physiological problem, not behavioral.

The only thing that seemed to work was Lunesta. Then gradually is became less severe and now Tranquil works. But without the Tranquil I'm still awake all night. I do believe that behavioral hygiene needs to be maintained so as to help coax the body to do what it's supposed to do when it's ready though.

[jumpinjiminy]

There is no hope for me getting on a DMD anytime soon, so it's symptomatic treatments or nothing.

Shiela, the neuro just sent in a script for Ambien and says to double the melatonin. This is something I've battled for over 20 years. I've been fired over it. My daughter was considered a truant in school one year because it was so bad. That was the same year I got fired. I sleep through the alarm clock! I sleep through multiple alarm clocks. I had my friends and family take turns calling me in the morning to wake up, and I slept through those.

I can see how someone would cry disclosing this very embarrassing situation to a doc. It brings tears to my eyes thinking of the time my bf carried me to the kitchen table from a dead sleep and sat me in front of a cup of coffee in the mornings.

I started out life as such a morning lark, and then something happened early on that derailed that course. I've not been able to get back on track since.

Now off to the pharmacy to try another something. This is the first I've tried one of the newer sleep meds. I'm sick of the xanax hangover. He said this one can cause that, but not nearly to the same degree.

[palmtree]

I know the world gets up in the morning and goes to sleep for 8 hours at night. Anything else is simply unacceptable.

I say ***** to all that. I have had a delayed sleep pattern all of my life. I sleep when I am tired and am awake when I am awake. It's harder to structure your life but it can be done.

If you are still able to work, maybe a night job is the answer.

I think you are being very hard on yourself. It's OK to sleep in the morning. It doesn't make us bad people.

[Shiela]

Hope this works for you jumpinjiminy. Let us know.

[jumpinjiminy]

Thanks, Shiela. So far, so good. No hangover this morning. Woohoo! I felt better rested this morning than usual. It's been a long full day. I'm hoping that the Ambien and Provigil can help force me back into a normal schedule. I used to be such a morning lark, and love getting up early - between 4:30 and 5:00 am. I get so much more done that way.

Palmtree, I've been dealing with it that way for the last 12 years or so. I have to get up pretty early to get my son off to school, and twice this week, I slept through that morning time when I should have been making him breakfast and helping him get his things together. Thank God his dad has started pitching in and gets him up for me and packs his lunch. Otherwise, he may have missed school altogether.

If I don't do this, it hurts my kids. Otherwise, I would just work a second shift job. I've been working for myself at home for a good while now, but am having a harder and harder time doing the work with each passing year. So now I'm back in school retraining for something more sedentary.

[Redwings]

There is no hope for me getting on a DMD anytime soon, so it's symptomatic treatments or nothing..

Hi jj:
The uncomfortable truth is that, even if you were to ever get on an MS DMD, DMDs aren't symptom-treatment meds. So -- as far as your symptoms go -- it will ALWAYS be symptomatic treatments or nothing. DMDs aren't expected to help with symptoms, and they certainly aren't going to relieve symptoms you've had for 10 or 15 or 20 years.

Assuming, for sake of argument, that you've had MS for 15 years even though you've never shown the classic CNS lesions, it's also realistic then to expect that your MS is following the normal course of MS. And that normal course is that approximately half of people with RRMS will transition to SPMS within 10 years, and 90% will transition within 25 years. If DMDs are known to only slow progression, serious consideration has to be given to just how much slowing can be expected after 15 years, when more than half of cases are already progressive.

With limited expectations of slowing, and extremely limited expectations of symptomatic relief, it doesn't appear as if an MS DMD will ever change your life by very much.

So, since you brought it up, I have to agree with you that, realistically, it's going to be symptomatic treatments or nothing. I'm heartened that it sounds like you're finally onto something that's helping you get at least some relief. I hope that you find more ways to manage your symptoms, and to get and stay even more comfortable.

[jumpinjiminy]

Hey, thanks Redwings. We're on the same wavelength, with all of it. I've looked at the statistics and realized everything you're saying is spot on. It's helped me to calm down and deal with what is.

We keep nipping away at this from the edges, and I have hope that with proper management of some of these bigger things, and some of the hidden things that were uncovered, there might be a decent shot at another decade or two of near normalcy.

All I'm concerned about at this point from my neuros (one high level specialist, the other local for emergencies) is that we keep an eye on the progress and have some idea of how to attack it if I have another aggressively strange year like this last one. (Not aggressive for MS, mind you, but aggressive for what my experience has been like overall).

Regular, decent sleep would be a big improvement. All we have to focus on is health building, and until the next wave comes along, that's where my head is at.

Thanks, again for the sound reasoning and encouragement.



As a side note, my grandfather had MS, and his was a long, mild course until one big episode in his early 60s. Since they didn't rehab back then, it was all downhill from there for him. They had no DMDs and they didn't use steroids. But they did try treating him with high doses of vitamin A, if I remember correctly.

[onlyairfare]

I've found that getting adequate sleep is the single biggest factor in how mild or severe my MS symptoms are. Yeah, heat is bad, but if I don't get my 7.5 - 8 hours sleep per night (on average - I can "make up" a few missed hours over the weekend by napping in the afternoon), then the symptoms will be really bad.

So it's sleep hygiene for me, just call me "sleep nazi." I go to bed at the same time and get up at the same time most nights, whether it's a weekend, holiday or workday. I take tizanidine and gabapentin at bedtime anyway, and they usually send me right to sleep. Enforcing that sleep-wake cycle, like it or not!

My husband gets up early for work too, though I almost always wake up 5 minutes before the alarm clock goes off. If I don't, then the alarm or my husband will wake me up, since I do need to be at work on time, or I would lose my job. I used to be a natural night owl, but not any more.

[palmtree]

Jumpinjimmy,

I remember those days when my son had to go to school early. If it weren't for his father I don't know what I would have done.

I admire you for trying to conquer this. I wish you the best of luck with the remedies. Insomnia is a nightmare and it definitely makes MS symptoms worse.

[jumpinjiminy]

Airfare, I'm sure lack of sleep worsens the symptoms. It can't help things, right? If nothing more, it triggers headaches and weakness, simply from the fatigue. These sleep meds are not as bad as what I need for the headaches when they hit. I'm well on my way to becoming the heat nazi and the sleep nazi!

Palmtree, it was last spring that I finally couldn't fight my son in the morning anymore and I had to break down and ask his dad to do it for awhile. He has ADHD and Aspergers, and since being in public school (which ruined him on going to school for several years), and every morning was a flurry of make breakfast, run upstairs and remind him to put on an article of the clothing, run downstairs to check on breakfast, run upstairs to check on the dressing progress, run back downstairs and start packing the lunch, run back upstairs to cajole some more on what article of clothing came next . . . you see? Plus there were the arguments and fighting because he resisted every step of the way.

His dad took care of this for about nine months, but he constantly complained about getting to work and getting home later that he liked. Now we split the difference. It's been working really well that way. He still gets to work early. He packs the lunches and gets him up, and I make breakfast and make sure he's ready on time with his school bag packed.

So my role has changed a little. I've let go of being the lunchbox nazi (hard because I've always been a huge nutrition nut), and have become the peace and heat nazi.

Second day in a row . . . up before 5:30 am!