- Joined
- Sep 5, 2020
- Messages
- 3,161
- Reason
- DX FIBRO
- Diagnosis
- 02/2020
- Country
- DE
Since this thread is surprisingly popular (by views, 2k to date), maybe I should summarize and update it.
To answer my thread question: Yes, in April my 2nd and 3rd trial with CBD oil as well as 2nd with melatonin zombified me to the extent that I was on sick leave for a month, until I found GABA. My best sleep help since then, even more than the GABA, was as mentioned above to considerably up the passiflora to 4x289 mg, 1 every 2 hours, starting at 19:00. Passiflora was something I hadn't felt any effect on at the normal recommended dose of 2, but testing GABA and other amino acids showed me that the dosage and time I take things very much influences effects. So I revisited 5-HTP, L-tryptophan and melatonin, with no success. Because of gastrointestinal side effects (GI-sfx) of tryptophan tablets I pulverized and encapsulated them and reduced the dose. Similarly I broke small pieces off the 2mg melatonin tablet, but even 1mcg morsels continued to zombify me. I had had similarly severe GI-sfx from ashwagandha and no help and wasn't prepared to expose my wife to that horse smell again.
The only positive thing about my ongoing severe jab-sfx is deeper longer sleep stints (of 3h), so I never get round to taking the 4th passiflora, as it would be too late to take it around 5:00.
Since a long old post of mine elsewhere (Better sleep: 30 wakers and stoppers) doesn't turn up in the search engines anymore, I'll put it here:
Update on the "30 wakers and stoppers", which I might now call "hunting & preventing/alleviating insomnia triggers":
I have very few local pains left due to the mattress topper & lambskin, the acupressure, yoga and stretching and know what to stretch and use my arnica cream when they occasionally do (e.g. lower back unrest, elbow, neck and plantar fasciiitis). I still have to cold shower before bed to stop my lower back unrest at night. (I seldom have distracting thoughts, but when I do the cold showering turns them off too.) Tough at the moment, cos the jab-sfx make any showering warm or cold hurt, but necessary. Under 2 minutes, now alternating and often making embarrassing silly noises, not as tough as I was pre-jab...
I still keep a sleep diary, noting in abbreviated form how long I'm up and how I'm feeling and praps what I'm doing, if not sleeping: dozing / autogenic training / yoga nidra, but I count that as sleep. Somehow I have to get up to usually 8, preferably 9h. At work I've arranged not to have to be there before 9:30, and even that's often too early, so better 11:30. One of the necessities of being able to work at all.
My computers are on night shift from 16:00 on. I still always use blackout blinds. I can leave my earplugs out a lot of the night now, but as soon as I hear something - people or birds, they're back in. Since I've found out from a recent study that dry air is better for congested or crusty nose, I air more and have less problems with it. I only seldom use nose strips now. I have to wear a 5th pair of socks for my Raynaud's this year and since the jab-sfx I need hot water bottles every night, that's my favourite heat. I still can't sleep on my back for long, as it severely increases lower back problems, but do so for about 5' every time I lie down, putting a hard cushion under my hunchback, and blankets under my backside in a way that it doesn't touch the mattress. My sleep lab psychiatrist thought this might be restless legs, but Restex didn't help at all - it's pressure on my tailbone that's the problem. My acupressurist hasn't been able to get much of a handle on it. Also the soft palate noise still comes when I drop off on my back, but that's a warning signal that I should turn (twist-stretched) to one of the pillows on either side. I've developed 6 sleep positions which I alternate as needed. My pee frequency at night is a bit better from GABA, but I have to drink a little at night due to dry mouth, for which I also successfully use GC dry mouth gel and a lipstick. My gut & stomach are better from perfected elimination diet & praps supps. As I now mainly (want to) rely on the supps, I no longer try to sleep when I can't, I just get up until I'm tired again. Or if nec. I now often use yoga nidra by Ally Boothroyd, not just to get to sleep, but as sleep substitute - I imagine it is even better sleep than my normal sleep, because I am then so relaaaxed. If I'm wide awake too early I use it to doze and praps sleep, until I've finished at least 8h. The longest of hers I've found so far is 3h, but usually I actually sleep the greater part of her 1 and 2h ones.
Despite my ongoing jaw inflammation I have no more jaw pain at night from any of the 6 or 8 causes I'd identified, so things like jaw relaxation have helped. Likewise seldom headaches. I can't sleep together, as I still need the freedom to move regularly.
If I get a hot flush/flash I turn over the quilts or air or get up.
As I say at the end of "30 wakers": It's important to remember that it's proven we sleep more than we believe we do, so even dozing is great and I count that as sleep.
Bloggy type:
OK, I was wide awake at 4:20 and now I've written this I think I'm tired enough to get to sleep again. If not, yoga nidra or something equally relaxing. Rare that all breaks together are more than an hour nowadays. I'd been going to bed later trying to prepare for the 31st, but we've decided it's not good for me and going back to earlier tonight seems a bit disruptive. It's grown important for me to feel free to be up if I'm wide awake and don't force myself. My test is open my eyelids and feel how easily that is possible. Sleep like love is brilliant when it works and gets horrid when forced. Yoga Nidra (like autogenic training) is a great way for me of not-sleeping being nice and restorative tho.
Edit: Then sleeping till 10:42 my sleep tally today is "9h34, up 4x (2h13)".- the last stint was 4h42! (I think the longest ever stint since fibro) (last supps at 1:30, except ALA & OPC at 3:35)!?!
I'd only read to take ALA away from meals, now I'm looking at the nitty-gritty and it's much more complicated..: Insomnia can be a side effect (that might explain the 1h40 break... but not the 4h40 deep sleep stint after that... but It can improve blood pressure and blood flow, maybe that was it? So in mornings better with meals if you didn't need that, also with L-carnitine it can improve alertness and brain fog, one study (by Mhadavi, 2021) shows dose dependency .... enhanced endurance & strength during exercise ... can make you tired with higher doses by increasing glucose uptake and decreasing blood sugar (maybe it's high for me, as 2nd time, last yesterday midday) ... that's all from the un-winder.com about ALA before bed, they say: praps.)
To answer my thread question: Yes, in April my 2nd and 3rd trial with CBD oil as well as 2nd with melatonin zombified me to the extent that I was on sick leave for a month, until I found GABA. My best sleep help since then, even more than the GABA, was as mentioned above to considerably up the passiflora to 4x289 mg, 1 every 2 hours, starting at 19:00. Passiflora was something I hadn't felt any effect on at the normal recommended dose of 2, but testing GABA and other amino acids showed me that the dosage and time I take things very much influences effects. So I revisited 5-HTP, L-tryptophan and melatonin, with no success. Because of gastrointestinal side effects (GI-sfx) of tryptophan tablets I pulverized and encapsulated them and reduced the dose. Similarly I broke small pieces off the 2mg melatonin tablet, but even 1mcg morsels continued to zombify me. I had had similarly severe GI-sfx from ashwagandha and no help and wasn't prepared to expose my wife to that horse smell again.
The only positive thing about my ongoing severe jab-sfx is deeper longer sleep stints (of 3h), so I never get round to taking the 4th passiflora, as it would be too late to take it around 5:00.
Since a long old post of mine elsewhere (Better sleep: 30 wakers and stoppers) doesn't turn up in the search engines anymore, I'll put it here:
Like many, I have to sleep more (+1h = 9h) than before fibro, with more waking up & trying to get to sleep again, 3-8x per night, 30'-4h. (Sleep lab said: reduced slow wave sleep phases, otherwise OK. They measured 78% snoring, but I don't (audio check), so it was my nose problem, see below.)
Some of the stuff I unsuccessfully tried was Willow bark, glutamine, valeriana, passiflora, tryptophan, 5 HTP, progesterone, lavender, Swiss pine. What helped getting me back to sleep for a few months, but too harmful (8 adverse effects): amitriptyline. 9mg of 10% CBD oil for a week made me tired in the daytime, but not at night. (Neither reduced pain.)
Aside from my pain diary, I started a sleep diary. Getting pains down (with osteopathy, acupressure, yoga) helped sleep a lot too. The Ache in the daytime is more of a problem and harder to keep down, but is strangely hardly a problem at night, only sometimes, when I overdo it, cold showering before going to bed helps me. These basics allowed to pinpoint, analyze and treat/trick the various sleep symptoms more and more. I make it a habit now to immediately do something about every little bit, never waiting for a small pain to increase.
Self-discipline with writing a sleep diary, even abbreviated, and using it, is necessary. It may cost 1' every time, if you have a lot of things one after the other, it may throw you out completely for one night, but it's worth it in the end. Keep it in balance.
Sleep hygiene
Ears-Nose-Throat:
Bladder / Urological: Peeing: Drink earlier in the day, only soy drink, only small sips at night.
Gut/Stomach / Gastrointestinal:
Muscles/Joints//Tendons/Fascies/"Bones" - (Orthopedic)/Physiotherapeutic (from bottom to top)
Lungs / Pneumatological: Lying on chest: Sometimes obstructs oxygen-need. Sometimes place pillow and blankets so it's less.
Teeth / Dental: Inflammations: Marigold Essence. If sipping necessary: not on that side.
Skin / Dermatological: Itchy: Less water on skin. Lotion. Wash hair in time. Bites: Plaster to prevent scratching.
Dunno / Everything / Misc.:
Some of the stuff I unsuccessfully tried was Willow bark, glutamine, valeriana, passiflora, tryptophan, 5 HTP, progesterone, lavender, Swiss pine. What helped getting me back to sleep for a few months, but too harmful (8 adverse effects): amitriptyline. 9mg of 10% CBD oil for a week made me tired in the daytime, but not at night. (Neither reduced pain.)
Aside from my pain diary, I started a sleep diary. Getting pains down (with osteopathy, acupressure, yoga) helped sleep a lot too. The Ache in the daytime is more of a problem and harder to keep down, but is strangely hardly a problem at night, only sometimes, when I overdo it, cold showering before going to bed helps me. These basics allowed to pinpoint, analyze and treat/trick the various sleep symptoms more and more. I make it a habit now to immediately do something about every little bit, never waiting for a small pain to increase.
Self-discipline with writing a sleep diary, even abbreviated, and using it, is necessary. It may cost 1' every time, if you have a lot of things one after the other, it may throw you out completely for one night, but it's worth it in the end. Keep it in balance.
Sleep hygiene
- Try changing sleeping time. I always tend to sleep better before 10pm, more like 9:30 or 9pm.
- Shut yourself down / go into sleep mode at least an hour before. Incl. anything that could trigger your thoughts, like computer (even if you have that in night shift mode, i.e. without the blue light.)
- Try not to sleep at daytime. Power nap under 20mins at most.
Ears-Nose-Throat:
- Light: blackout curtains or blinds till every single ray stays out.
- Noises: Ear plugs if you can (try all the various types). Noise reducing headphones. (Water-noises.) Change room/bed.
- Nose congested or crusty at about 4am: Sinupret (herb pills) works best (seems to liquefy), hot pad on !feet is very good too (sometimes sinuses or forehead, move it round), changing sleeping sides (sometimes the congestion is best on the upper nostril, sometimes on the lower). Nose strips help breathing, but careful if you have sensitive skin, take it off after 3 hours. If it's crusty (heating in winter): ointment (best before the night). Keep room air damp with wet towels on the heating (not above 60%, to prevent mold) (plants and other things don't help that much). Use various acupressure points. Pull tip of nose long for a few minutes. Breathe intensely a while thru the congested nostril. Breathing exercise. Cold shower. Hot/cold shower. One doc I know assumes it's a fibro thing, but I haven't heard this from fibromites online. My ENTs suggest a laser-operation, but I'd rather not (they say 5 weeks feeling like you have a cold; but that's not counting fibro-amplification...)
- Soft palate noisy after a few mins. lying on back: turn head.
Bladder / Urological: Peeing: Drink earlier in the day, only soy drink, only small sips at night.
Gut/Stomach / Gastrointestinal:
- Gut: Find Your Diet. Don't eat later than 7pm. Psyllium.
- Hyperacidic stomach burning: Find Your Diet. Sip of drink (in my case soy). Gastritol (herbs). If unaviodable eat something light and quickly/not "chewable", like yoghurt. Preferably with lights out/very dim and with no stimulating smells, suitable temperature.
Muscles/Joints//Tendons/Fascies/"Bones" - (Orthopedic)/Physiotherapeutic (from bottom to top)
- Everything: Try out different mattresses. I need a hard one for my middle back, but just putting a thin soft topper on it helped loads. Or a fur under sensitive part of the body (e.g. lower back) might. Hot pads / water bottle. Stretching by lying twisted/askew. Burning feeling: cold pad?
- Stabs: Hot water bottle, arnica cream, massage, trigger points, acupressure points.
- Thigh: Twisting leg outward at knee or foot (outside or in bed).
- (Calf-)Cramps: Stretching (turning) (early enough). Drinking enough? (For some: Magnesium)
- Lower back: Back exercises, Yoga back exercises. Daytime. At night: cold showering.
- Elbow / wrist etc.: When cocked: straighten. Tendons, not joints!?! Pins’n’needles.
- Middle back: Small hard cushion under it.
- Clavicle: Trigger pointing. Arnica cream.
- Neck: Wedge a small pillow/cushion under forehead & half of my face, so face-down. (Face-up is a problem because of my palate noise, but sometimes it's OK.) Even better might be a ring cushion with breath-holes... Something like a higher mattress next to yours.
- Thinking this/Notes: Pda (palm) next to bed if there is a lot happening.
- Dreams: Breathe, autogenic training, turn dreams round in a pleasant direction (practice while drowsing).
- Ideas: My ruminations are usually positive ones about my music or work, so I call them - positively - "ideas", but they still disturb my sleep. Either way: Sometimes I have to get up and just write things down/compose for a certain time. However long (I try to get it under 10mins.): Cold showering gets me tired again afterwards.
Lungs / Pneumatological: Lying on chest: Sometimes obstructs oxygen-need. Sometimes place pillow and blankets so it's less.
Teeth / Dental: Inflammations: Marigold Essence. If sipping necessary: not on that side.
Skin / Dermatological: Itchy: Less water on skin. Lotion. Wash hair in time. Bites: Plaster to prevent scratching.
Dunno / Everything / Misc.:
- Sleeping together: Don't be "considerate" ;-(, do what body needs, i.e. move. Not too long. More intense contact / quality time at day.
- Hot: Air room before/during/in between sleep, swap blankets & pyjamas earlier. Cold shower.
- Headache: Drink, eat, deep breathe. Mint oil. Massage, acupressure points (various possibilities)
- Awake / restless (you don't have to have restless legs/RLS to feel restless
): Enjoy drowsing if that feels right. Count it as sleep!!! Don't get uptight about it. And I keep plugging it: I sleep like a baby, for 2h-4h about 10' (seldom 20') after a COLD SHOWER (2x1', starting with legs)! It stops a part of my thoughts, the Ache and the pains. Or hot 1' then cold 2x1'. And keep hot pad etc. ready in case necessary.
Update on the "30 wakers and stoppers", which I might now call "hunting & preventing/alleviating insomnia triggers":
I have very few local pains left due to the mattress topper & lambskin, the acupressure, yoga and stretching and know what to stretch and use my arnica cream when they occasionally do (e.g. lower back unrest, elbow, neck and plantar fasciiitis). I still have to cold shower before bed to stop my lower back unrest at night. (I seldom have distracting thoughts, but when I do the cold showering turns them off too.) Tough at the moment, cos the jab-sfx make any showering warm or cold hurt, but necessary. Under 2 minutes, now alternating and often making embarrassing silly noises, not as tough as I was pre-jab...
I still keep a sleep diary, noting in abbreviated form how long I'm up and how I'm feeling and praps what I'm doing, if not sleeping: dozing / autogenic training / yoga nidra, but I count that as sleep. Somehow I have to get up to usually 8, preferably 9h. At work I've arranged not to have to be there before 9:30, and even that's often too early, so better 11:30. One of the necessities of being able to work at all.
My computers are on night shift from 16:00 on. I still always use blackout blinds. I can leave my earplugs out a lot of the night now, but as soon as I hear something - people or birds, they're back in. Since I've found out from a recent study that dry air is better for congested or crusty nose, I air more and have less problems with it. I only seldom use nose strips now. I have to wear a 5th pair of socks for my Raynaud's this year and since the jab-sfx I need hot water bottles every night, that's my favourite heat. I still can't sleep on my back for long, as it severely increases lower back problems, but do so for about 5' every time I lie down, putting a hard cushion under my hunchback, and blankets under my backside in a way that it doesn't touch the mattress. My sleep lab psychiatrist thought this might be restless legs, but Restex didn't help at all - it's pressure on my tailbone that's the problem. My acupressurist hasn't been able to get much of a handle on it. Also the soft palate noise still comes when I drop off on my back, but that's a warning signal that I should turn (twist-stretched) to one of the pillows on either side. I've developed 6 sleep positions which I alternate as needed. My pee frequency at night is a bit better from GABA, but I have to drink a little at night due to dry mouth, for which I also successfully use GC dry mouth gel and a lipstick. My gut & stomach are better from perfected elimination diet & praps supps. As I now mainly (want to) rely on the supps, I no longer try to sleep when I can't, I just get up until I'm tired again. Or if nec. I now often use yoga nidra by Ally Boothroyd, not just to get to sleep, but as sleep substitute - I imagine it is even better sleep than my normal sleep, because I am then so relaaaxed. If I'm wide awake too early I use it to doze and praps sleep, until I've finished at least 8h. The longest of hers I've found so far is 3h, but usually I actually sleep the greater part of her 1 and 2h ones.
Despite my ongoing jaw inflammation I have no more jaw pain at night from any of the 6 or 8 causes I'd identified, so things like jaw relaxation have helped. Likewise seldom headaches. I can't sleep together, as I still need the freedom to move regularly.
If I get a hot flush/flash I turn over the quilts or air or get up.
As I say at the end of "30 wakers": It's important to remember that it's proven we sleep more than we believe we do, so even dozing is great and I count that as sleep.
Bloggy type:
OK, I was wide awake at 4:20 and now I've written this I think I'm tired enough to get to sleep again. If not, yoga nidra or something equally relaxing. Rare that all breaks together are more than an hour nowadays. I'd been going to bed later trying to prepare for the 31st, but we've decided it's not good for me and going back to earlier tonight seems a bit disruptive. It's grown important for me to feel free to be up if I'm wide awake and don't force myself. My test is open my eyelids and feel how easily that is possible. Sleep like love is brilliant when it works and gets horrid when forced. Yoga Nidra (like autogenic training) is a great way for me of not-sleeping being nice and restorative tho.
Edit: Then sleeping till 10:42 my sleep tally today is "9h34, up 4x (2h13)".- the last stint was 4h42! (I think the longest ever stint since fibro) (last supps at 1:30, except ALA & OPC at 3:35)!?!
I'd only read to take ALA away from meals, now I'm looking at the nitty-gritty and it's much more complicated..: Insomnia can be a side effect (that might explain the 1h40 break... but not the 4h40 deep sleep stint after that... but It can improve blood pressure and blood flow, maybe that was it? So in mornings better with meals if you didn't need that, also with L-carnitine it can improve alertness and brain fog, one study (by Mhadavi, 2021) shows dose dependency .... enhanced endurance & strength during exercise ... can make you tired with higher doses by increasing glucose uptake and decreasing blood sugar (maybe it's high for me, as 2nd time, last yesterday midday) ... that's all from the un-winder.com about ALA before bed, they say: praps.)
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