Tired But Wired progressive insomnia

Homina

Member
Hello All
I call it tired but wired because the tired makes the wired
It is a lifetime problem I believe caused by emotional stress , pollution, chronic infection,overexertion,
My analogy is I have a battery inside me that gets drained and does not have the energy to help me sleep
and it does not recharge fast

It messes up my sleep schedule can't get to sleep at desired time always later (progressive insomnia)

None of the sleep aids work consistently so far

What do you good folks do for this progressive insomnia?
 

Not dead yet!

Well-Known Member
Hello All
I call it tired but wired because the tired makes the wired
It is a lifetime problem I believe caused by emotional stress , pollution, chronic infection,overexertion,
My analogy is I have a battery inside me that gets drained and does not have the energy to help me sleep
and it does not recharge fast

It messes up my sleep schedule can't get to sleep at desired time always later (progressive insomnia)

None of the sleep aids work consistently so far

What do you good folks do for this progressive insomnia?
Yup me too. I'm pretty sure this is fairly common among us, but I can't say for sure. I'm awake tonight. I triggered a minor crash by being suddenly active for two days.

My doctor and I worked out a schedule that helps me sleep. I'll tell you about it, but it's not a recommendation. It's an illustration of how far I have to go to start healing my sleep cycle. I "failed" to sleep at night for over 4 years, so the healing process is very long. It consists of the following:

1. If you could possibly need 2-3 drugs to prevent migraines, then why not apply that logic to sleep? Result: I'm taking two drugs and swapping between them because my body just starts ignoring a drug as quickly as after 1 week of use.

2. Being relaxed through the day is the key to having the possibility of sleeping at the right time of night. So non-drowsy muscle relaxers are my choice. But... that's only because I can't take the -pam drugs... ie. diazepam, lorazepam, etc. Well I can take them, but they lose effectiveness in 2-3 weeks. I can feel the effectiveness ebbing after 10 days. So there's no point in that.

3. I reached out to the mental health community. There is a great forum for mental health support called "Crazy Meds" (they have a sense of humor). It isn't recommended by any doctors because it can be seen as offensive to laugh about mental health. They have an insomnia forum and I reached out to that. The overwhelming reply was Seroquel. In insomnia doses, that's 1/10th of the amount you'd use if you were having psychosis, however it is an official antipsychotic and thus very powerful. It is one of the two drugs I switch between for sleep. The other is a very strong prescription antihistamine. Both would become unusable after just a couple of weeks if I didn't do that.

4. f.lux on my computer - it takes out the "blue" in the computer screen without making it look too bad - so the screen affects me less.

5. I know that for some ME/CFS patients, even stretching can cause a relapse, but I'm lucky enough not to be that way. I must stretch my hamstrings and quads if I expect to sleep that night. I use many stretches I learned in Judo class. Like the pinwheel hip stretch (https://www.jasyoga.com/posts/pinwheelvspigeon), which is also used in yoga. My stress level comes way down after a stretch, and it lasts about two hours.

6. I discovered that dreaming (and remembering it) is restored to me with Choline supplements. I started taking them for Liver health, but the side benefit is that I sleep much more deeply and wake more refreshed, often remembering a dream. I haven't done that very often in the past 10 years. Now I have a reliable way to sleep well - usually.

7. I avoid all possible stresses for an hour before bed. My husband knows that, unless we have to flee a nuclear assault or a torrential flood, he is not to mention any news to me in the hour before bed. I take that further and avoid all news that is on the internet 90% of the time. I read in depth articles only, and only in mid-day.

8. I prefer to re-watch old TV shows on DVD than seek out the new shows. I'd rather have something predictable and I ration the over-supply of exciting dramas and new TV shows that I potentially could watch. I know it sounds boring, but I see it like mindfulness.

9. When I can't sleep I do something that requires total focus, a video game (I love mah jongg solitaire), calligraphy, advanced calculus. Don't laugh, math is great for mindfulness.

10. I've practiced and to some extent still do practice "sleep hygeine" but it's not effective for me with this illness. In fact the advice to "stay awake" if you're not tired is not helpful. It just makes my internal clock get more screwed up.

11. I go outside whenever it's sunny for at least 10 minutes during the period 10am - 2pm. This works unbelievably well. But only as part of an overall plan. It's not a one shot fix.

12. Swimming would work extremely well, but I haven't felt comfortable in any local pools. There are many I haven't tried though.

13. I use earplugs AND a blackout mask. I trim the earplugs so they don't hurt, they seem to bruise my ears otherwise.

14. I figured out how to use a CPAP on my own and bought one second hand after three doctors told me I was "borderline" for apnea. I couldn't even fall asleep in the sleep centers so how can they say that? I can't sleep like that. And I know the signs... the panic wake up, the feeling of unable to breathe, I can feel my throat closing, and the heartrate through the roof.

15. Some years ago I found a combination of OTC drugs that would stop my migraine after a 2 hour nap. It involves taking a lot of different antihistamines (no, I don't recommend you do that). It has the side benefit of making me chilly, though I usually feel sweaty. That chill will sometimes make me comfortable enough to sleep. I don't do it often anymore, maybe 5 times a year. But it's my last hope if I"m up at 1 am.

16. Prednisone or Valcyclovir can each (independent of each other) make it possible for me to sleep. I think this indicates a viral source and an overactive immune response.

17. Did you know that coffee has melatonin in it? A plant form of it anyway. It works better than melatonin pills for me. I drink a coffee, and I fall asleep. How weird is that?

Lately, I've been going to sleep around 11 PM which is the time I went to bed before I was ill.

Tonight is the exception. And there are many exceptions. This isn't going to be cured quick.

Things that didn't work:

* sleep hygiene is of limited use
* kava, valerian, sleepy tea varieties, homeopathic pills, etc.
* accupuncture, including energy balancing tea prepared just for me
* biofeedback (warm hands, etc) just makes me more sweaty and uses up precious mental energy
* single OTC antihistamines do nothing for it
* opiates (they make me sleepy on day 1, but after, it's back to alertness)
* Tricyclic antidepressants
* I've tried 7 antidepressants (not TCAs), none helped
* Even huge doses of melatonin do nothing or just make me more brain fogged but awake
* Alcohol, it just makes me ill
* Lying perfectly still and perfectly straight with deep breathing - this worked when I was a child

I've become so uncomfortable at night that I can't tolerate another person in the room. It caused a two bedroom situation with my husband. We are as happy together as we've always been, but I can't deal with the tiniest noise or bed movement when I'm trying to sleep. I often lock the door and keep the cats out too, especially if they insist on sleeping on top of me. The insomnia has caused a great deal of isolation in my life.
 

Homina

Member
Not Dead Yet
Thanks for the long response there are some things I can try in your list

In your list of things that don't work same for me except
Accupuncture Helps me with sleep (But not with severe insomnia)

Regular exercise helps (If I don't overdo it)
A supplement called Rena Food helps
Gaba helps
Ashwaganda helps
Magnesium helps
B12 Hydroxocobalamin helps
Some actual drugs help too but like you I develop a tolerance fast

Almost Nothing helps when it really hits I just have to rest a lot and not eat


Underlying infection I think is a fairly big piece of the puzzle but it takes a long time to get it out
so I don't know once it is gone how I will be doing
I have heard Hyperbaric oxygen has gotten great results in killing off infection so I am planning to try that for a year or more

What kind of non drowsy muscle relaxers do you use?
Have you tried PEM busters ?
http://forums.phoenixrising.me/index.php?threads/list-of-supplements-and-drugs-which-reduce-pem-post-exertional-malaise-crashes.48438/
 

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