Trouble Sleeping? POTS may be to blame. - Video

This information is from a postural orthostatic tachycardia syndrome (POTS) organization, but is helpful for people with ME.  Includes tips on getting better sleep.  (Trigger warning - includes statements on suicide.) - 05 Oct 2021

​Sleep Disturbance “Maximizing Sleep” (From the IC Primer, page 14)

“Sleep disturbance is typically expressed by prolonged sleep, sometimes extreme in the acute phase, and often evolves into marked sleep reversal in the chronic phase.”

Items with quotations are from the IC Primer, page 14.  Other information is from discussions with patients.

1.“Reduce stimulants such as coffee, alcohol, and decongestants.”

 “Create a quiet environment.”

Make sure that light, noise and temperature are the best for good sleep.  This might take some time to get this right.  Some might want it warm, others cooler.  Many like sleeping or resting in a recliner to elevate the legs and possibly help with back pain.

 2. “Pace day-time activities and incorporate rest periods. Over-exertion can increase insomnia.”

3.  “Listen to the body and rest or sleep when needed. Sleep dysfunction and an inability to produce sufficient energy on demand makes it essential that low energy reserves are not depleted."

This one is probably the most important.  This one is also probably the hardest for people with ME to do if you have responsibilities to others or don’t have a caregiver to help with daily chores.  As most people with ME know, just getting up or brushing your teeth can take all your energy for the day.

 Excellent explanation of what is needed for sleep cycle (includes specific vitamins and supplements).

4. “Establish a regular bedtime as much as possible. However sleeping when needed takes priority. In the chronic phase, incorporating short naps into the day may assist in being able to establish a regular bedtime.’’ 

5. “Quiet activities or listening to a relaxation DVD before bedtime are helpful.”

▪ AUDIO LINKS to help sleep.
“Those who are severely ill or in the acute phase may sleep much of the time but sleep is non-restorative.”

6. "Have a warm bath prior to bed and keep the body warm at night."
Some find that being cooler at night helps them sleep better.

7. “Keep the bedroom dark and quiet: use black-out curtains, turn the face of clocks away from the bed, use eye masks and/or ear plugs if necessary.”

8. “Postural support: make sure the mattress and pillow give proper postural support.”

 A good mattress and pillows are really important.  They are also expensive.  This is one area that is a concern for many on limited income.

9. “Keep the bedroom as a ‘worry free sanctuary’ reserved for sleep and sex.”

Stress and worry can often lead to tension and make falling asleep difficult.  Relaxation methods might help.

10. “If sleep is impossible, get up and go to another room and do calming meditations or relaxing activities."

Other sleep problems to address include:
  • Vivid dreams​​
  • Restless legs
  • Pain
  • Medication side effects
  • Sleep Apnea

Discussion on Medications for sleep -These are only suggestions. It is always important to discuss medications with your physician.
  • Over-the-counter (non-prescription) products like melatonin and valerian, simple antihistamines such as Benadryl (diphenhydramine) and Tylenol PM and Advil PM, or doxylamine (used in Nyquil and ZzzQuil) might be helpful. Other suggestions are passion flower and chamomile.  Amino acids, such as L-theanine and L-tryptophan are sometimes helpful.
  • Kava Kava tea
  •  Magnesium
  • B12 and CoQ10 in the morning in order to "wake up" helps improve sleep at night for some people.
  • Magnesium Oil Spray for restless legs and also general aches and pains.
  • ReMag Lotion is fantastic!  It isn’t sticky and goes on like a lotion.  It can be found at www.RnAReSet.com , Carolyn Dean also has ReMag that will help to keep your magnesium up.  Pam Lutey says "I have taken it for years and it has helped to keep me in the normal range."  It is available at the link above.

Prescription medications are also another approach.  This should be under the supervision of your physician.  They need to work with you since people with ME are extremely sensitive to medications.  It is usually best to start low and increase slowly.

Some suggestions from members include:
  • Klonopin (clonazepan)  with a dosage of 0.5-lmg to initiate sleep along with trazodone (25-50mg) or a tricyclic antidepressant to help maintain sleep.
  • Lunesta   (eszopiclone), Rozerem (ramelteon), or Sonata (zaleplon).These work to naturally stimulate the sleep center of the brain, and are not thought to be addicting.
  • Sonata   has the benefit of being short acting (3-4 hours, so it can be taken for  early awakening).
  • Belsomra (suvorexant) is the newest sleep medication. It works uniquely by suppressing orexin, a neurotransmitter that promotes wakefulness.   Belsomra has been alleged to help patients not only fall asleep but stay asleep.
  • The hypnotic drug Ambien® (zolpidem) is useful for both sleep initiation and maintenance.
  • Zolpidem increases the depth of sleep but users  may adapt to the drug over time, and some people experience amnesia  and/or sleep walking.
  • Analgesics and/or non-steroidal anti-inflammatory drugs (NSAIDs) can be used for pain and often benefit sleep as well.
  • Xyrem (socium oxybate) has some appealing properties, because it increases slow wave sleep and restores rapid-eye-movement (REM) sleep.
  • Amitriptyline
  • Nortriptyline
  • CBD Oil
​
​Drugs that might make sleeping worse;
  • benzodiazepines (except low-dose Klonopin)
  • narcotics 
  • antidepressants such as Prozac and Wellbutrin.

More suggestions for Problems with Sleep

  • Have a Neurologist interpreted sleep study done. (In the IC Primer,p.12)
  • Zinc monomethionine
  • I can help u sleep book/Cd by Paul McKenna
  • Get 30 minutes of sunlight between the hours of 6 a.m. & 8:30 a.m. To help reset the body clock.
  • Use a 10,000 lumen light for 30 minutes every morning
  • 100 mg l-theanine to slow brain activity/monkey mind
  • One glass of tart cherry juice (particularly Montmorency cherries) may improve sleep thanks to high levels of melatonin in it. 
  • Blue Blocking Amber glasses 
  • Weighted blanket
  • Antihistamines like cetirizine, hydroxyzine hydrochloride or Diphenhydramine (may interfere with REM sleep)
  • NOTE: Many feel that best sleep comes in the morning - 10 to 14 hours sleep may be necessary.
  • Some have sleep reversal. Some doctors suggest adapting to this and not trying to fix it.
  • ​See in this video information about how anitoxidants interfere with sleep.

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