Living With Sleep Disorders by Ben's Friends

Living With Sleep Disorders

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I have atypical trigeminal neuralgia. Ten years ago the onset was sudden to a front tooth that was aggressively treated during a dental procedure. About this time, sleep became extremely poor while at the same time sleep was categorically the best treatment to reduce pain. I get to sleep ok, but wake up hours later. Sleep maintenance is the primary issue, though quality of sleep is an issue as well. I had a sleep study done in a hospital setting. There were 5 rem awakenings. Data overall was not consistent with sleep apnea but did reveal difficulty in enjoying a deep restorative sleep. I tried using a cpap set up. Too much pain from the mask and never a sense that such an apparatus was worth pursuing. Meds for ATN: 200mg Lyrica. Down from 350-400mg. I med sensitive and prefer as little as possible. I do wonder if lyrica contributes to sleep disturbance. As a sleep aid, I use 1mg of Lorazepam every other night. I have been using this medication prior to my ATN diagnosis…for about 25 years. (I am 67 years old) The reason for limiting usage is that I quickly build up a tolerance. Lorazepam offers something dramatic to me …I sleep longer, though still awaken with great difficulty of going back to sleep. Most dramatic is that the next day I feel more inner drive to live life and my cognitive functioning is better. However, by mid afternoon…I start to crash. By late afternoon, my body feels heavy. I tell my wife that gravity is taking over. I feel as if i am walking on Jupiter. Physically, I look as if I am above average shape as compared to others my age. Muscle atrophy is not an issue. I do manage to be physically active…aerobic workouts at a wellness facility and long hours gardening. Inflammation is severe in knees, back, and hands. I manage this inflammation with what I have learned in physical therapy and diet. Sugar and too much rice or bread has a strong connection to inflammation and pain. Lyrica does not manage this area of pain, at all. Lyrica, though, does abate dental pain…about 50%.
After ten years, I have resigned myself to self-treatment. I strongly believe that if I could get better sleep that I could better manage ATN and have a more activel/social life style.

Other co-morbid disorders:
–GERD (treated with 40 mg Nexium)
–Hashimoto’s thyroiditis (treated with natural thyroid)

My analysis for underlying contributors to sleep disturbance:
-Lyrica
-ATN
-social isolation
-benzodiazepine withdrawal
-brain chemistry

By brain chemistry I am loosely referring to neurotransmitters. My response to Lorazepam suggests,not only an underlying anxiety, but also a problem with Gaba receptors. Subjectively, I feel as if there is a fight or flight response that surfaces upon awakening. This is only a subtle response but one I feel that should not be ignored. I took a course in meditation, followed by daily application. Sleep quality never improved and abandoned this practice. No matter, a little voice, wonders about stress as being a major factor. I have tried many anti depressant medications. GI side effects were immediate and severe.

Going forward, I would like to find a practitioner that is well versed on all the factors that impact my lack of sleep. My fears: seduced into a procedure that could cause harm (the ATN clinical population has a litany of examples of malpractice by the medical system) and/or seduced into ineffective treatment that is extremely costly in both money and time. The Mayo clinic comes to mind as a starting place. Yet, I fear that I will throwing away a lot of money with nothing to show for it. Irrational? Maybe.

No matter, I need to get out of what i consider a rut.

Regarding sleep aids, ambien et al, too many side effects of brain fog the next day.
One that I have not tried: Belsomra.

Hello there, Bill

Welcome to one of Ben’s Friends newest communities. In case you didn’t realize it, Ben’s Friends is a network of over thirty communities for people coping with rare diseases and conditions, as well as for people close to them. Here’s our impressive list of communities.

You haven’t had any responses to your post yet, mostly because there aren’t very many members here yet. It’s kind of like being the first to arrive at a party: things are a bit quiet until a few more people arrive. The hosts are here though! (That’s TJ, our chief of Moderator Support, Christina, Merl and me, Seenie.)

Here’s a suggestion for you: because you have ATN, join our Facial Pain community. I’m pretty sure that you will find that disordered sleep is pretty common amongst that population. Using that community as a platform, ask about sleep and encourage those with an interest in sleep disorders to join us here. We have lots of people who join more than one of our groups.

On a more personal note, my husband has a very serious sleep disorder. He has PLMD(S), and Sleep Apnea. I know first hand the toll that a sleep disorder can take on both the patient and on their family members.

I hope that we can manage to get this community “movin’ and shakin’” really soon. Yikes, that sounds a bit like a sleep disorder right there!

All the best to you

Seenie

PS The best way to get people to respond to posts is to ask questions. Referring to the question(s) in the subject line helps too.

Seenie,

I’ve been active at the facial pain forum, but actually sleep does not get much attention.
Hence, this is why I’m here. When it comes to improving sleep, the medical community,too, is limited. At least, that’s my perception. It’s been about 6-7 years since I had a sleep study and I wonder if data collection has improved. Do they have data that speaks more to quality of sleep? I was told that rem awakening frequency is the only metric. And, regarding the impact of lyrica and/or lorazepam on sleep the medical prescriber has nothing to say of value. My experience of the medical community is that curiosity is not a prominent in their practice of medicine,nor is there a clearing house that tallies individual experiences as an aid for collaborating with their patients. Sleep is the very best medicine as an adjunct to almost any disorder. Makes plenty sense to have this as a forum, though I suppose it was intended for sleep disorders as a primary diagnosis.