39 posts in this topic
My 25 year old son, diagnosed with autism, severe anxiety, intellectual/developmental disability, has had a severe sleep disorder his entire life.
He averages about 3.5 hours of sleep per night. Often, that's not all at the same time but aggregate between 10pm - 6am.
Over the years, we've tried dozens (and dozens...) of both alternative and conventional treatments.
Specific to prescription medications to help induce sleep, we've tried over 15. Almost all medications have had a paradoxical effect on him (activating vs. sedating). None have helped with sleep.
He's been on risperidone for about 3 years. No other meds.
We have not tried Trazadone (and probably many others).
ANY ideas are welcome!
All of this has been going on for almost 2 years:
Severe Generalized / Social Anxiety Disorder
Major Depressive Disorder
OCD – Usually Appears in “Health Worries”
Sleep Apnea, verified by at home test and hospital c-pap study. A lot of Hypopneas and some Central Apneas, O2 Sat. drops in 80% level without c-pap. I have been using a C-Pap machine for over 150 days, 100% compliance.
Sleep Phase Disorder – 4.5 hours of sleep at night, HAVE to nap during day, everyday for approx.. 3-4 hours
Excessive Daytime Sleepiness
Calcification on Left Distal Achilles Tendon (Going to PT for this)
Right Achilles is painful also
Knee Pain, difficult upon standing
Back Pain, lower back, burning pain when standing too long
Right Hip Pain, notice upon standing
Severe TMJ (on going for many years)
Joint Pain is worse in morning and after getting out of recliner
Stiffness is severe, difficulty getting socks and underwear on
50lb weight gain over the past 1-1/2 year
Increased Appetite, can eat all the time
Stomach feels like I’m hungry all the time
Tongue Lesions (burning) and Geographic Tongue on a regular basis
Blurry Vision at times, caused by Dry Eyes
Thick abnormal Toe Nails
Thumb Nails have dip in them
Dry Skin on Knees and Scalp (always digging skin away near ears)
Memory Issues, both short and long term
Shakiness in hands
Shortness of Breath
High blood pressure and headache upon waking – 138/100
Diagnosed with General and Social Anxiety Disorder, OCD, and Major Depressive Disorder approx. 16 years ago.
Have been on many different Antidepressants, Benzos, etc. for approx. 16 years
Have been on Klonopin for 10 years straight.
Current cocktail: 6-8mg of Klonopin per day, 200mg Luvox, 1200mg Trileptal, Vitamin D-5000. Cocktail has been a life saver for my mental illness. See a Therapist Weekly, P-Doc Monthly, Primary every 2-3 months. Have tried most newer SSRI’s and Benzo’s in the past. Either not effective or side effects too severe.
In 2012 went through 6 weeks of transcranial magnetic stimulation treatment (not effective for me)
Tested positive for Epstein-Barr virus approx. 1-1/2 year ago (showed a past infection)
Confirmed “tongue issues,” by ENT Doctor
Confirmed “sleep disorders” by Sleep Doctor … He is not a Neurologist, but rather works in General Medicine, and in the Sleep Lab.
Confirmed “achilles” problem by X-ray and Orthopedic Doctor
Tested Negative for ANA test (specifically looking at systematic lupus)
Tested Negative for Thyroid Conditions, tested 1-1/1 year ago
Adrenal Function normal, tested 2 years ago
Liver, Kidney, EKG, Heart Ultrasound, Blood Sodium, and all other tests normal, except Vitamin D level very low. I now take Vitamin D-5000 everyday (been over a year).
Visit with Rheumatologist indicated that likelihood of Fibromyalgia is low.
C-pap therapy has not helped.
No doctor has yet to determine why I am so tired (daytime sleepiness), Fatigued all the time. Current sleep doctor wanted to prescribe Provigil, but now wants me to use light therapy for phase disorder and then use c-pap when I nap.
Have no idea why I have such severe joint pain/aches in ankles, knees, hip and back.
I THINK that there is an underlying cause to some of these issues, but do not know what.
I do know that I have mental illness, and setting that aside for the moment, current treatment is going well.
Is there anyone else like this out there?? I have hit that point in my life that I honestly don’t know what to do next. My quality of life is severely affecting my marriage and family relationships. There are days that I do not want to get out of bed, wishing this was a bad dream.
I'm experiencing what I think is a "nervous breakdown" of sorts. An extreme stress response my body can't get out of. My worst symptoms are caused by sleeping and/or only at night, early morning. I'm low on quality sleep because of this.
I can feel myself holding my breath as I'm sleeping. Usually around 2am. I'll sleep through it but can feel myself doing it. I'll awake with start sometimes holding my breath still or gasping for air around 4am (when the insane adrenaline type surges start). I also have episodes of Catathrenia but this seems different (no sounds come from the exhale). I'm med free, btw.
Anyone have any thoughts on this? Thank you!
As the title says, how much benadryl do you take for sleep?
I have occasional restless nights and was wondering how much benadryl can I take?
I don't remember exactly when this has started up but I've become pretty bad at getting any sleep at night and if i do it's 1-2 hours max. It's interfering with my life because not only do i stay up all night, but I'm usually up during the day because of events or me trying to get this pattern back on track. But when night time comes around I find that I'm wide awake and have a hard time sleeping. And then I get anxious because i know I should be sleeping because it's going to be hard to carry through the day with any activities. (I do get a bit tired in the afternoon)
For example, right now, its 3:54 AM and my family planned a fun day trip tomorrow, we'd be leaving the house around 7:30 AM and be gone all day. I'm feeling quite anxious because i got 2 hours of sleep the night before this, and today I've only napped for 30 minutes. I don't know what is up with me. My family doesn't know, they've mentioned my eyes being darker than usual but i shrugged it off. And I haven't taken any meds, I'm not a fan of them but if I have to I just might.