‘A Well Spent Day brings happy sleep.’
We all know that sleep is vital for our health; but how to reconcile this knowledge with how our illnesses make us feel ?
There I was last night falling asleep at 10 pm but unable to go to bed as I desired; since I suddenly began experiencing severe heartburn after taking my last dose of pills of the evening. So instead of finding rest in my own bed had to search for meds to relieve awful pain in my belly and throat which felt as if I open my mouth fire would surely come out. After taking several medications to ease the burning pain and drinking mint tea and passing the floor for at least a couple of hours my fiery pain was finally easing and although I was quickly becoming more alert through the whole ordeal I was eagerly anticipating a good nights rest after the last two weeks events which had maintained me extremely occupied and unable to sleep much. and then as many of you who live with a chronic illness in their life can relate as soon as one problem eases another pops up.
Sure enough after showering putting on my pj’s relieved my belly pain was FINALLY subsiding for me to be able to recline, a new pain set in. This one was of course a real pain in my derriere literally and figuratively! Now my hip was in deep throbbing pain for no good reason other than to interrupt my sleep. The pain which was centralized in my ischial tuberosity ( the siting bones of our pelvis) was worst with laying down- surely there was a low pressure storm brewing somewhere in my vicinity. More muscle relaxants needed along with stretching exercises and a deep massage to the area along with more pacing until pain began to ease around 2 a.m.
As you can see and know from personal experience – getting a good night sleep has multiple layers of complexity. In order to understand our problem and how to achieve better rest in order to delay cognitive decline, diabetes, heart disease among many other problems caused by poor sleep not to mention increase pain, fatigue, stiffness and increased depression, we have to look at the many facets blocking of what should be a non-challenging natural occurrence.
First, we have to understand that as we age our own circadian rhythms undergo natural changes. Hence, teenagers can sleep till noon while elderly people usually arise very early in the wee hours of the morning. More importantly is the fact that for those of us who suffer neurological illnesses such as PD or Alzheimer’s, our internal clocks can become completely unable to function and become disconnected. This disruption is what causes us to get confused and invert our sleep wake cycles- sleeping all day and up all night. We need to avoid this pattern because the disruption leads to accumulation of amyloid plaques hallmark of Alzheimer’s. In end stage Alzheimer’s and in PD people rarely sleep for long periods of time , rather they dose off and on all throughout day and night making the propensity for confusion, hallucinations, and psychosis that much worse.
The way to prevent and combat this natural tendency to shift our sleep caused by our disease is to make every attempt to reset our inner clocks. This takes a continuous effort on our parts. ( see ‘8 top sleep habits’– bit.ly/NN-SleepTips) experts have suggested that although maintaining a routine of bed time, the most important factor is Keeping a routine of awaking at the same time each day. This is I believe one of the biggest challenge’s we face. certainly for me. It’s easy during school days since I have to take my child to school however, it goes out the window during breaks and weekends. One way to help is making sure that the room you sleep ion is very dark at night but light comes in in the am. if unable to get light in, sleep experts recommend the use of a light box.
In order to improve night time sleepiness is….
- taking sleep medications which I do frequently- the best thing I have found to help and prevent tolerance hence decrease effectiveness from developing is alternating meds or taking one type several times a week rather than daily.
- increasing physical activity during day time – better if early morning. do not want to exercise late because it will only stimulate you and keep you awake. even if you are in the hospital- get up if able to and walk in the hallways several times. or do tai-chi if wheelchair bound.
- get rid of distractions– i.e. TV’s, iPad, iPhones etc. from your room.
- try to get natural daylight everyday for at least 30 minutes- open the blinds of your house, room, or go sit outside, better yet walk outdoors.
- avoid alcoholic and caffeinated drinks in the evening.
- keep room cool and quiet.
- take melatonin.
- make sure bed is comfortable for you. May need to get a memory foam etc.
Second, another common obstacle is pain, stiffness, discomfort- as I experienced last night. Pain is usually worst at night, experts says because of lack of outside stimulation to distract us from our pain. Sleep deprivation can cause a vicious cycle i.e. more pain hence less sleep.
- What we do is be able to have treatments available to counteract or avoid completely if its something that happens routinely.
- Talk to doctor about pain meds – avoid narcotics if at all possible- prefer muscle relaxants like klonopin, baclofen, tizanidine and even anti-inflammatories
- increase dopamine meds
- stretch/ not exercise- frequently during the day and in the evening before bedtime. that was my problem yesterday, I forgot to stretch as often as I usually do and spent too long sitting hence the resulting pain.
- some of the pain can come in form of restless legs- again talk to doctor to adjust medications- perhaps longer acting dopamine agent like Neupro patch or Rytary will do trick.
Third, other medical problems or non-motor problems…
- increase urgency and frequency or urge to urinate– talk to doctor about medications for this; keep diary as to cause. Treat urine infections and decrease fluid intake after 8 pm. Rule out prostate problems or enlarged uterus or other female problems as the cause.
- bed wetting– get alarm for bed; wear adult undergarments, get medications , make sure not diabetic, and make sure constipation controlled. find cause – is it because they cant get out of bed? get bed side commode; or because can’t get out of clothes – find clothes with Velcro, magnets, snaps etc./ to make it easier. cant get out of bed? change sheets to satin, increase dopamine meds to improve mobility and or prescribe meds to decrease urgency and frequency like Detrol, vesicare, myrbetriq.
- sleep apnea – common in older men but also more common in people with MSA- use bi-pap or c-pap- these machines are a lot smaller, talk to Ent specialist may be able to do surgery to correct.
- Rem Behavior– increase dopamine meds, use melatonin, don’t take dopamine agents so close to bed time give at least 1-2 hours.
- if having reflux like me – take antacids, ppi’s ( protein pump inhibitors) like Zantac or my favorite is Carafate liquid or pill before each meal and at bed time. Avoid spicy foods, caffeinated foods and alcohol and realize that antibiotics usually can deplete flora making heart burn more intense as it did me. talk to gi doctor make sure don’t have infection with H. pylori which can also affect absorption of medications rendering them less effective. easily treated with antibiotics.
- try to take as few medications as possible and fewer times as possible to control symptoms- fortunately we have so many new options that we can use intermediate and extended release and patches which can greatly decrease number of times we need to take meds because not only having a neurological problem makes us more sensitive to side effects especially in us women but the more meds we take the higher the interactions and higher possibility of side effects. In my opinion, long are the days where we had to treat patients with medications every hour to 2 hours around the clock because of all the advances. So if you find yourself in this pattern talk to your doctor about other choices e.g. dbs surgery, duopa pump, neupro patches, addition of Comt inhibitors like comtan/tasmar. Fortunately we should soon have hopefully within the next year a 24 hour Comt inhibitor (Opicapone), etc.
- neuropathies- address the cause and treat. Is it related to PD or B12 deficiency or diabetes ?
In conclusion, you have gathered already that proper sleep hygiene takes work and effort and that one fix does not fit all and even for same individual as disease progresses there are many factors involved which have to be addressed by you and your physician. Don’t be embarrassed to discuss or ignore. Adjust both your medications and life style to accommodate for these changes. May also require a stimulant during daytime to maintain sleep wake cycle which I often prescribed to my patients in conjunction with sleep aids. All in an effort to try to maintain a “normal” sleep wake cycle.
As I finish typing this blog, I have already taken my sleep aid so when I am done I will be ready for bed sensing sleep beginning to hit me before I get second wind and I am up all night again; which I could easily do and my body prefers. However, from experience as patient, doctor, and caregiver the next 24 hours will be mostly unproductive and exhibit poor concentration skills and decrease multi-tasking abilities. I certainly don’t need this nor do you since we all have responsibilities to attend to.
This week make time to start looking at your sleep habits closely and identify the problem areas then talk to your doctor to help find the right treatment for you. plus remember that your disruptive sleep patterns not only impact you but your bed partner as well who may become as sleep deprived as you from constant commotion in middle of the night.
Happy Sleep everyone……
- More info go to bit.ly/NN-REMSleepDisorder
- Source: Cohen, Marisa. “sleep Matters.” (April/May 2016) Neurology Now 45-49.