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By mylove On 2015.09.07 10:20
Oh boy. I was finally hoping to get some sleep over this long weekend to recharge, but it seems like that's never going to happen......

I'm in the process of sorting out which pieces of this puzzle I should bring to the neuro appt in a month, and which aren't PD-connected. And then hope to heaven she can suggest something. Maybe some of you can help. The sleep issues are killing us (me literally, the relationship for sure).

Temperature dysregulation. He's hot all the time at night, even when the house is around 65 degrees or the fans are blowing on us. It's enough to drench him in sweat and get him out of bed at 1, 2, 3 am. Except when he's not. He got up last night at 2 because he was hot and couldn't stand it, then came back to bed freezing and shivering and spent hours trying to get warm. Doesn't seem to be an issue during the day as much.

Coughing/sneezing/eyes running. The other thing that wakes him are big coughing or sneezing fits. Again, at about 3 am.

Earlier and shorter sleep cycle. He lingers before bed - goes to sleep about 10-11 and then wakes around 3-4 am. That's gotten substantially shorter. We have lost two hours of sleep somewhere over the last two years. :(

Nighttime urination. Multiple times up and down. Probably a side effect of...

Increased thirst. Not a new thing, but significant.

Nighttime pain. Always been an issue. We had previously determined it was early wearing off and tried a bedtime sinemet, but he doesn't care for the heightened dreams and limb thrashing, so he doesn't take them.

The sleep quality thing has really become an issue. Between the pain, sneezing fits, getting up to pee, too hot/gotta drink, we don't get very much sleep at all. And when I mention that we need to solve it, he gets mad and suggests that maybe it's time for separate rooms. I don't WANT to do separate rooms yet....bedtime is the only time we have together in any meaningful way. All the rest of the time he's only happy in his garage all alone, and we pass longingly by at meals and during potty breaks like ferries on separate routes. Somehow there has to be something to help.

I'm pretty sure this sleep picture fits with dysautonomia (there are other symptoms as well but I won't bring them up here). Am I imagining it, or trying to connect dots where there are no connections? I thought some of the things were just his own idiosyncrasies until they started to get this bad and you take them all together. Anyone else have an opinion?

By lurkingforacure On 2015.09.07 17:44
Mylove, boy can we relate. I don't have an answer to the sleep issue, but I can tell you that if my husband gets a better night sleep than normal, his PD is significantly easier to manage. Bad nights of sleep (our norm) equate to bad days. For everyone, unfortunately.

So I would hazard a guess that many of the issues raised in your post are related to, and could be improved by, better sleep. I don't know how you get better sleep, though. We have tried:

melatonin
more sunlight during the day
heavy dinners with lots of protein
trying not to nap during the day
more exercise
staying up later
magnesium baths

I think all of these quit helping as you get further into this disease (if they helped at all). I know this isn't what you want to hear, but I've looked so hard for something to help with sleep and have never been able to find anything that helped my husband.

To cope, I ultimately realized that the only option was to move into another bedroom. I have to share one of our kid's bedrooms because we don't have any extra rooms in our house, but at least I can get some sleep and function halfway decently the next day. I work, too, besides raising our kids (who aren't always as kind and understanding as I wish, so we have all kinds of issues with that) and running the household, so I had to get sleep or I was utterly useless at work and a witch to everyone everywhere.

I know how you feel, and it took me too long to make the decision to move into another bedroom. I should have made it much earlier, and not suffered as long as I did, slopping through my work, inflicting my bad mood on our kids, etc. and etc......it certainly didn't help my husband sleep any better if I were there or not.

I think we all tend to delay this very hard decision, as it represents a significant change in how much PD is impacting our lives and how far in the process we are. It stinks, but there it is and what can you do but deal with it?

Everything works better when we get enough sleep: our bodies, our minds, and our relationship with our loved ones. I hope you are able to start getting some sleep soon:)

By jcoff012 On 2015.09.07 19:04
Michelle, I am sorry you and Ben are going through this. May I throw out somehpthing? Maybe unrelated, but who knows?

Is it possible that Ben is diabetic or prediabetic? I am pre and as such have many of Ben's symptoms...thirst, sleep disturbances, constant urination at night, vivid dreams, and I am constantly too hot! In our case, I get up every morning around 3AM to turn on the ceiling fan over the bed.

Again, this might be way off, but thought I would toss it into the mix. I worry that *my* health issues bother Carl!

We have solved part of our night time issues by having our largest, heaviest meal at noon...we eat a very light meal of fruit, a slider or two, and possibly a sugar free pudding...seems to help us both.

Another suggestion, one that is probably self-serving...I always try to get up in the morning before him, and go to sleep before him, as I sleep soundly until our nighttime sleep disturbances kick in! Carl thrashes, flails his legs, and talks in his sleep! He also snores, but that was prePD!

I hope you find peace soon. Love you both. Keep fighting this stupid disease! Jane

By lurkingforacure On 2015.09.08 00:05
That's a good point, Jane, there is a close link between PD and diabetes, so maybe it's worth looking at that...it certainly couldn't hurt and it could help a lot. Something we should all keep in mind.

By mylove On 2015.09.08 09:38
Thanks so much, guys. I'll broach the blood sugar issue, though he's in the drs office so often with this test and that test that they've tested just about every parameter you could think of. It's worth a shot, though. My guess for all the nighttime urination is all the nighttime beer! Lol

Lurking, sad to say we've tried most of that list, too. I had high hopes for melatonin, as did the neuro. We have tried cannabis, which is legal here, and that does help with the pain and with getting to sleep, but it doesn't seem to carry him through a full night either.

Being as the waking is almost always at the same hour, my guess is a med wear off. When he's not too tired to discuss it civilly, he wonders too if his sleep cycle at that hour is so light that any little thing can wake him (the cat, me turning over, etc). But it doesn't explain the other things, like the coughing/choking fits, or the temperature dysregulation. In doing some research, I see that temperature dysregulation, polydipsia (increased thirst), sleep problems, and increased lacrimation/salivation can all be secondary PD symptoms...but that's scary to contemplate because those things fall under the umbrella of autonomic dysregulation, and that's a place I don't want to go. Most of those people are also having POTS and falls and dizziness as well, and we aren't having any of that (so far, please heaven). He's doing so well, comparatively speaking.

Surely I'm just making a mountain of a molehill, right?

By lurkingforacure On 2015.09.08 15:43
Is it possible the recent trip took a toll and he just needs some time to get back to where he was before the trip? We know travel can be pretty tough on our loved ones...if so, lots of rest, whenever he needs it, to try to rebuild his reserve. And yours:)

By mylove On 2015.09.08 23:00
Spot on, rebuilding our reserve! :) I wish you good sleep as well!

By carman96 On 2015.09.09 00:00
My husband went through a period when he was just drenched in sweat at night. Now it seems he is cold even when it is 80 degrees!
My husband was taking detrol for his frequent urination and sometimes incontinence. Went to a urologist and found out he has an enlarged prostate and not able to empty his bladder. He's on 2 meds for that. Still has a problem!
He has a lot of excess saliva and has a problem swallowing it. He sometimes has coughing fits when he lays on his back from the saliva. He had botox injections for that which didn't help that much but next time she will try giving him more.
We sleep in different beds but right next to each other.
He takes Valium and melatonin at night which helps but he still has to get up to pee, and so do I. He usually goes back to sleep but I don't always.
So I can relate to lack of sleep, but as for solutions, all I can do is just keep trying
Good luck, hope things go better for you.

By RobinWilliams On 2015.09.29 11:44
We have a lot of same issues and no solutions. It helps to know I am not alone. Besides not sleeping very much at night he has back problems and cannot lay flat. We ordered a lazy boy with lift features and hope that helps.
Any suggestions on sleep solutions? It is good to have support! I am new to this group but we have dealt with Parkinson's for 12years and my father also had it.

By LOHENGR1N On 2015.09.29 17:24
Michelle, I don't have the answer for sleep either. The coughing and choking is probably excess saliva or post nasal drip we sleep and drool or it goes down the throat and with any swallowing problems, well if we have a problem awake we're bound to have them asleep.Night time urination? We take pills all day and evening sometimes right up to turning the light out at night so yes we have to get up and pee. Many times one will get referred to sleep clinics. They don't know that much about P.D. (like many they think it is just tremor) Sleep disturbances is listed as one of the ten non motor signs of Parkinson's Disease. So when sleep clinics or online sights suggest try not to nap, more exercise, no caffene, don't drink within a couple hours of bed time, try to stay up later etc. this might help a normal person but it does not take into consideration Parkinson's Disease. If it is part and parcel to the disease enough to be a non motor symptom? Should we expect these to work as in healthy people. Many times we forget battling this disease that with all the medication out there, the you need a movement specialist belief. The pharmacies developing medicine for the movement we lose sight of these non-motor problems and forget they are a part of the disease. also with newer medication focused one motor or movement problems we expect great things from them. We patients have Parkinson's we'll never unless there is a cure become the person we were pre diagnosis let alone the years building up to symptoms to finally diagnosed. In our day to day struggles of fighting this disease we patients and caregivers tend to and do at times forget this. Sadly as we advance over the years we have to begin to concede to this beast in us many of us do this kicking and fighting each concession. But as time goes on we concede. If we fall asleep and nap during the day then well nap. We're going to be awake most of the night anyway. Barring a cure we will never,( even with all the medication available, operations, P.T. and biking) be the person we were before Parkinson's Disease struck Us. We fight as long and as hard as we can along the way if we're up all night we adapt as best we can for a person with parkinsons, as it stands now we will always be a PWP barring a cure. Sometimes we all lose sight of that in this battle for stability and sanity with a progressive ruthless disease. I've probably strayed far from the topic as I've gone on here I hope it makes sense take care, best of luck and hang in there

By Mitch On 2015.09.29 19:02
Sleep is/was a problem for my wife. we too tried cannabis (vaporizer and smoke).....as u said it worked but lasted such a short time......about 3 weeks ago i purchased one of those oil vaporizer pens with indica cannabis (lasts a longer time).......with just one puff it works great....most nights to bed about 10 and sleeps till 5 or better....

By mylove On 2015.09.29 22:06
Al - the excess saliva thing makes a lot of sense. Can he be having it only at nighttime if it's not an issue during the day?

Mitch - I'll try that. Might last longer than the medibles we have been trying. I wondered if maybe we hadn't gotten the right strain yet.

The temperature thing seems to be the weirdest. Also the fact that it's a newish symptom for him. Don't know what to make of it, unless we are sharing menopause!

By LOHENGR1N On 2015.09.29 22:32
Michelle, yes it could be just a night thing as gravity does the work during the day as he is upright and not laying down. The temperature thing happens as our autonomic nervous system is affected by the disease. Sweating, can also happen as we try to absorb medication (Sinemet). I can go from dry to looking like I took the ice bucket challenge in a couple minutes, sweat dripping off my beard. A friend with P.D. and I used to go fishing and by 10 a.m. when the day started to warm we'd call it quits as we were sweating copious amounts, beards dripping shirts soaked. Seems all part of this damned disease.

By Mitch On 2015.09.29 23:38
mylove.....cannabis is way hard to get strain and dosages unless u do it yourself or have a legal caregiver growing what u need. Even the length of time it is flowered makes a major difference...grown indoor or outdoor makes a difference. Our state (Ca) has medical and the wife has her recommendation and we have been growing our own cannabis organically indoors now for 7/8 years.... its the same strain, cloned and grown over and over. I do suggest if u want to try for sleep.....go to your dispensary and purchase a vape pen filled with INDICA oil.......Its good for sleep and good on pain and unlike edibles starts working quickly....start on dosage way low, oil is strong......try a half inhale the first evening..... .......next evening take full inhale, etc...If its by bedside and he wakes and can't sleep its easy to reach over and take another dose.....just don't overdue, it can do the halllucinations, etc too.....The wife gets full night sleep most nights on one dose (inhale) Once in a while she wakes and can't sleep and takes another and goes right back to sleep.......hope this helps some......

By mylove On 2015.09.30 08:47
Thanks, both of you. Yup...the Sinemet does 'catch' him a bit when it kicks in. He gets increased lacrimation and the sniffles till it settles in. Definitely a possibility.

Thanks for the tips, Mitch. Washington has been pretty good for medical grade for awhile, but now we seem to be going through industry growing pains now that the recreational side has taken over. We have already seen a change in price and service, but that's a whole 'nother post all to itself. Luckily there are still a few places where you get to consult with a "pharmacist" who can recommend specific strains and blends for specific issues. We have a friend who is using oils, but mixed into a bit of peanut butter, though I agree the limitation on the oral route is the slower delivery system. We haven't tried the oil/vape yet, but will give it a shot. Buying a couple more hours of sleep/less pain is priceless.

By bksquared On 2015.10.01 01:03
Sleep was a big issue but things improved. The movement specialist prescribed klonopin and seroquel a half hour before bedtime. She said the benefits of good sleep out weigh any downside to the drugs. The dosage is enough to keep him asleep through leg cramps and kicking. As the pills wear off he wakes and goes to pee about 4am. (Down from 3 times a night) If needed he can take another half pill to go back to sleep. He does so only if he can sleep in since there are no a. m. plans. Our ENT recommended a wedge pillow to elevate his head and chest to help with the saliva coughing. The pillows come in various heights. He uses either a 7" or 12" wedge. ENT also recommended a soft neck collar at night to keep his throat and airway open. After a few nights of adjusting his quality and duration of sleep have greatly improved.

By mylove On 2015.10.25 08:15
Well.....here's the update. As much as we would like to treat these symptoms as minor irritants on their own that we can treat with practical tactics, write them off to aging or look for other causes....they're really not. Again, they're part of our old nemesis, PD. Our neuro is trying Rytary on him in order to combat the wearing off at night that she feels is triggering a lot of the autonomic issues. It was either the Rytary or yet another dose of Sinemet, taking us up to five times a day and nearing the max. As I write, he's trying to get some sleep from a sleepless night. Up at midnight to pee, then again at 1:30 because of the night sweats and devastating thirst, and when he came back to bed at 3 he's shivering cold with an extra blanket.

As much as I wish dysautonomia could be fixed by warm milk and happy thoughts, it just isn't true. I've been thinking a lot lately about long term planning. We have whistled past the graveyard for a long time and now I think it's time to have a plan for what we are going to do when things really do change. These smaller changes have come on pretty quickly over the last year. Sorry to sound so blue....

By makrivah On 2015.10.25 08:33
Mylove, my understanding and compassion go out to you. Hang in there. We had a difficult week with the doctors too. Continued decline on both physical and cognitive. More medications. I was also thinking its time to do the power of attorney, moving accounts to only my name, etc. Have I ever mentioned how much I hate PD and all it has taken from my husband, from our family and from us?

By sosad25 On 2015.10.25 11:06
My heart goes out to you too. Tomorrow is our first appointment with the new MDS/Neurologist. I fear that my husband is expecting some sort of miracle. I worry that it will upset him if I honestly tell her about the sharp decline that we have experienced in the last 6 months. It has gotten to the point that I am scared to go out with my husband as it is hard to predict if he will be able to move or have an episode that is almost seizure like.
And yes I agree that this terrible disease has taken so much from him, his children, grandchildren, wife, friends etc.
Take care everyone


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