my fibro started brutally in just one day. Has anyone experienced it this?

miamisunset

Member
Joined
Jul 28, 2022
Messages
13
Hi again ;-) - I do have many many ideas - after having identified and learnt to pretty much prevent at least 30 insomnia triggers, I take 13 supps, 2 especially, tried 8 further ones that didn't work and/or zombified me, various kinds of physio, various kinds of relaxation methods, incl. as sleep substitute.

Sweetkamie's already given some great experience advice on the 5 supps collagen, tryptophan, lithium oretate, GABA, melatonin... Of these collagen and lithium oretate aren't what I need, tryptophan and melatonin severely zombified me day and night, without improving, whilst GABA is my mainstay for almost everything including sleep. I'm similar to sweetkamie in many respects - I also have seizures.
But it's also good for relaxation, and Trudy Scott's anti-anxiety blog, website & book give brilliant insights into diet & supps, esp. GABA.

But as we're all different it'd be helpful for us/me to know exactly what happens at the moment when you try to sleep, to get a few toe-holds, see what you've tried & what you'd be most interested in...
How often is your arrhythmia now triggered by lying down?
How are your anxiety, stress, feeling alone & breathing problems now?
Which parts (thoughts, mind, body) of you feel sleepy, and which awake?
What have you tried for these aside from the alprazolam/Xanax:
meds, supps, diet, strategies, relaxation, breathing exercises, the vagal nerve exercises suggested?
Do you still take zolpidem/Ambien, but not alprazolam/Xanax? Anything else? The old medication that hadn't worked before?

do you take GABA alone before sleeping? or combined with any other supplement? I must give it a try.

the arrhythmia seems to be under control since i had the ablation. Also, because i developed fibromyalgia the vagus nerve stopped to be so active and has now a very low tone so the episodes drastically reduced after the onset of the syndrome. Fibro seems related to a very low vagus tone... and if you notice all the techniques for relaxation are aimed to increase the vagus nerve tone/parasympathetic system.

My anxiety is really bad in the morning, it gets better in the evening.

Zolpidem is the only thing i take for sleeping and the only way i can fall sleep but i am awake after few hours. I am tired of zolpidem, i have been taking it for months since the onset of the of this weird fibro and i really want to fall sleep naturally.

i really dont want to go back to Xanax, all my weird brain feelings before the onset of fibro started when i was taking this medication for sleeping.

i take 10mg of escitalopram for depression but i wonder if it is better to switch to another antidepressant which can help me to sleep better.

I really appreciate your advice, as i previously said i am really desperate.

thank you so much
 

miamisunset

Member
Joined
Jul 28, 2022
Messages
13
Hi again ;-) - I do have many many ideas - after having identified and learnt to pretty much prevent at least 30 insomnia triggers, I take 13 supps, 2 especially, tried 8 further ones that didn't work and/or zombified me, various kinds of physio, various kinds of relaxation methods, incl. as sleep substitute.

Sweetkamie's already given some great experience advice on the 5 supps collagen, tryptophan, lithium oretate, GABA, melatonin... Of these collagen and lithium oretate aren't what I need, tryptophan and melatonin severely zombified me day and night, without improving, whilst GABA is my mainstay for almost everything including sleep. I'm similar to sweetkamie in many respects - I also have seizures.
But it's also good for relaxation, and Trudy Scott's anti-anxiety blog, website & book give brilliant insights into diet & supps, esp. GABA.

But as we're all different it'd be helpful for us/me to know exactly what happens at the moment when you try to sleep, to get a few toe-holds, see what you've tried & what you'd be most interested in...
How often is your arrhythmia now triggered by lying down?
How are your anxiety, stress, feeling alone & breathing problems now?
Which parts (thoughts, mind, body) of you feel sleepy, and which awake?
What have you tried for these aside from the alprazolam/Xanax:
meds, supps, diet, strategies, relaxation, breathing exercises, the vagal nerve exercises suggested?
Do you still take zolpidem/Ambien, but not alprazolam/Xanax? Anything else? The old medication that hadn't worked before?
thank you so much

i take currently ambien which is the only thing which helps me to fall asleep for few hours. i have been taking ambien for months but i really need to find a way to fall asleep with pills. unfortunately i keep my hyper imsonia and i never manage to sleep any time of the day..

the arrhythmia seems to be under control since i had the ablation. Also since the onset of this "fibro" there were much less episodes since the vagal tone became very low. so definitely fibro is related to an unbalanced ANS.

I feel more anxious in the morning, it gets better in the evening but still cant fall asleep at all not matter the time of the day. Only by taking ambien i can manage it for few hours.

I have tried melatonin in high dose and CBD, they didnt make any difference.

I would not go for xanax again, all my strange brain sensations before the onset of fibro started when i was prescribed xanax for sleeping.

I am currently taking 10mg of escitalopram. Should i better switch to another antidepressant?

so much of GABA do you take ? do you take it alone or combined with any other medication or supplement?

thank you so much, i am really desperate to find a solution.
 

miamisunset

Member
Joined
Jul 28, 2022
Messages
13
Hi again ;-) - I do have many many ideas - after having identified and learnt to pretty much prevent at least 30 insomnia triggers, I take 13 supps, 2 especially, tried 8 further ones that didn't work and/or zombified me, various kinds of physio, various kinds of relaxation methods, incl. as sleep substitute.

Sweetkamie's already given some great experience advice on the 5 supps collagen, tryptophan, lithium oretate, GABA, melatonin... Of these collagen and lithium oretate aren't what I need, tryptophan and melatonin severely zombified me day and night, without improving, whilst GABA is my mainstay for almost everything including sleep. I'm similar to sweetkamie in many respects - I also have seizures.
But it's also good for relaxation, and Trudy Scott's anti-anxiety blog, website & book give brilliant insights into diet & supps, esp. GABA.

But as we're all different it'd be helpful for us/me to know exactly what happens at the moment when you try to sleep, to get a few toe-holds, see what you've tried & what you'd be most interested in...
How often is your arrhythmia now triggered by lying down?
How are your anxiety, stress, feeling alone & breathing problems now?
Which parts (thoughts, mind, body) of you feel sleepy, and which awake?
What have you tried for these aside from the alprazolam/Xanax:
meds, supps, diet, strategies, relaxation, breathing exercises, the vagal nerve exercises suggested?
Do you still take zolpidem/Ambien, but not alprazolam/Xanax? Anything else? The old medication that hadn't worked before?
thank you so much

i take currently ambien which is the only thing which helps me to fall asleep for few hours. i have been taking ambien for months but i really need to find a way to fall asleep with pills. unfortunately i keep my hyper imsonia and i never manage to sleep any time of the day..

the arrhythmia seems to be under control since i had the ablation. Also since the onset of this "fibro" there were much less episodes since the vagal tone became very low. so definitely fibro is related to an unbalanced ANS.

I feel more anxious in the morning, it gets better in the evening but still cant fall asleep at all not matter the time of the day. Only by taking ambien i can manage it for few hours.

I have tried melatonin in high dose and CBD, they didnt make any difference.

I would not go for xanax again, all my strange brain sensations before the onset of fibro started when i was prescribed xanax for sleeping.

I am currently taking 10mg of escitalopram. Should i better switch to another antidepressant?

so much of GABA do you take ? do you take it alone or combined with any other medication or supplement?

thank you so much, i am really desperate to find a solution.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,630
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi again again ;-) -
I've summarized all 3 of your last posts in here and'll try to give you some further orientation. :cool:
the arrhythmia seems to be under control since i had the ablation. Also, because i developed fibromyalgia the vagus nerve stopped to be so active and has now a very low tone so the episodes drastically reduced after the onset of the syndrome. Fibro seems related to a very low vagus tone... and if you notice all the techniques for relaxation are aimed to increase the vagus nerve tone/parasympathetic system.
since "fibro" vagal tone became very low. so definitely fibro is related to an unbalanced ANS.
Good to hear the arrhythmia is under control again, one worry less..
Could it be that your body overreacted to the vagus overreaction & caused the opposite?
I've been explaining the need for deep muscle relaxation etc. more with neurotransmitters like cortisol & serotonin rather than the nervous systems. I'll be taking your perspective more into consideration - whatever helps tho, and the neurotransmitters have helped me more than the nerve perspective.
But I should praps try finding a vagal nerve exercise (e.g. ear massaging) to add to my sleep toolbox, although I've long left all anxiety behind (usually...) - however sometimes hard to get blood pressure, heart thumping down etc. after having been up for a sleep break. Sukie Baxter (Stanley Rosenberg).
And I don't think there will ever be just one perspective / cause etc., even in one body, so I'm open.
zolpidem/Ambien is the only thing i take for sleeping and the only way i can fall sleep but i am awake after few hours. I am tired of zolpidem, ... taking it for months since the onset of the of this weird fibro .. really want to fall sleep naturally. ..... but i really need to find a way to fall asleep with[out?] pills.
I feel more anxious in the morning, it gets better in the evening but still cant fall asleep at all not matter the time
I have tried melatonin in high dose and CBD, they didnt make any difference.
I would not go for xanax again, all my strange brain sensations before the onset of fibro started
I am currently taking 10mg of escitalopram. Should i better switch to another antidepressant? /
I'm still curious if this anxiety is more mental or more physical....? Praps crucial for appropriate ideas.
If you don't feel up to tackling your depression without meds, then duloxetine/Cymbalta might be a better or worse option for that as well as other fibro symptoms - that'd be something you'd have to find out yourself. As long as I'm not suicidal I'd only use antidepressants for a few months and work on it myself instead.
Weaning from one antidepressant to the other is an art / challenge, there's been a recent thread on that.
so much of GABA do you take ? do you take it alone or combined with any other medication or supplement? do you take GABA alone before sleeping? or combined with any other supplement? I must give it a try.
@sweetkamie20: And where can i find the collagen with tryptophan powder ? I take 10 mg escitalopram so i wonder if it is okay to take it with it. Or should i switch better to another antidepressant for sleep?
Although some people do it, it's not recommended to combine either tryptophan, 5-HTP or GABA, which all increase (5-HT =) Serotonin with SSRI- antidepressants like escitalopram or (S)SNRI-antidepressants like duloxetine. It's an art to get serotonin balanced with GABA. The others I don't know as I didn't tolerate them. Too much serotonin gives you serotonin syndrome. Had it twice when trying to find my right dose, but could reduce the dose and tone it down after a few hours, exciting guinea pig challenge ;-).
I'm wary of saying how much GABA I take, because I need a very high dose, combined with high dose passiflora. Instead I recommend to follow Trudy Scott with de-capsulating it and increasing from 125mg sublingually while the symptoms get less (aside from a few interesting side effects in the first few days) and reduce again once they start getting more. Also look at Trudy Scott's anti-anxiety diet.
It's probably too difficult to get off escitalopram and zolpidem at the same time, if you'd decide to. Before doing that or while weaning off very slowly, I'd install a load of strategies to prevent & alleviate triggers for both.
I know my way around everything else, but as regards meds I had to stop most after 1-3 doses, longer only took amitriptyline for pain & sleep for 4 months, which was terrible, caused 8-9 side effects, didn't help pain at all and just zombified me, and I'm just so glad to be med-free, much better quality of life, despite increased hardships without the easy pill solution.
But of course I don't know if my insomnia is like yours and coped with depression, trauma & phobia long before fibro, it's a different balancing act if you have these all at the same time. Same as many I was so overwhelmed by fibro at the beginning that I tried all the doc/pill solutions until I realized they're doing more harm than good. Now I know my way around, MCAS couldn't shock me - others may need meds, me no chance....
I'm very careful about anything like "advice", since I can only imagine how your shoes feel like, not know.... 👐
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
267
thank you so much, such a good information. So which supplement you are currently using? And where can i find the collagen with tryptophan powder ? I take 10 mg escitalopram so i wonder if it is okay to take it with it. Or should i switch better to another antidepressant for sleep?

do you take the GABA alone? What is the best "combo" for sleeping? Thanks again, i am desperate, i cant really fall asleep

@JayCS questions are a great at way to unravel where your sleep process is vulnerable.

"But as we're all different it'd be helpful for us/me to know exactly what happens at the moment when you try to sleep, to get a few toe-holds, see what you've tried & what you'd be most interested in...
How often is your arrhythmia now triggered by lying down?
How are your anxiety, stress, feeling alone & breathing problems now?
Which parts (thoughts, mind, body) of you feel sleepy, and which awake?
What have you tried for these aside from the alprazolam/Xanax:
meds, supps, diet, strategies, relaxation, breathing exercises, the vagal nerve exercises suggested?
Do you still take zolpidem/Ambien, but not alprazolam/Xanax? Anything else? The old medication that hadn't worked before?"

Overall, the best course of action for each of us to pursue has to take into account some individualized things. If we are taking an anti-depressant, is it something we can safely wean off of and switch to something new? Are we drug-sensitive or tolerant? Also, could a medication we take be causing the insomnia (often, the answer is YES). Are other side effects of what we are taking outweighing the benefits of searching for something else? When should a change be made (should I wait until life isn't as busy or...)?

GABA is definitely strong enough all by itself for me. The dose we each need will likely be different so bear that in mind :) @JayCS really likes GABA and will be able to describe which parts of the sleep process it helps him with. For me, it helps me fall asleep and get restorative sleep.

Ageless Multi-Collagen by Bio Trust is what I use (vanilla is better if taste is important). I typically use 1/2 serving and it does the trick. Tryptophan is prescribed for depression, anxiety and insomnia in some places but other people will say it has limited effectiveness. It can interact with MAOI and SSRI drugs (it doesn't mean it will be positive or negative, just that it can).

The product page will promote its benefits for skin, hair, muscles and ligaments but if you keep reading the product page it will discuss the value of the amino acids and tryptophan. I'm not a big fan of Wikipedia but I attached a screenshot of a portion on tryptophan.

The only things I combine might be lithium oretate and the BioTrust collagen with tryptophan - I just play each day by ear. I would certainly consider lithium oretate an any time of day relaxer - probably take 30 minutes before you want it to take effect and then take the collagen. GABA is strong enough for me that I don't want to add anything more or it might be very hard for me to become alert and I hate that feeling...

Try to answer JayCS questions to see if someone has some more insight. Also, sorry I didn't get back with the other things I tried for sleep! We are a little tied up but will try to update my list today ❤️
 

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sweetkamie20

Senior member
Joined
May 16, 2022
Messages
267
thank you so much

i take currently ambien which is the only thing which helps me to fall asleep for few hours. i have been taking ambien for months but i really need to find a way to fall asleep with pills. unfortunately i keep my hyper imsonia and i never manage to sleep any time of the day..

the arrhythmia seems to be under control since i had the ablation. Also since the onset of this "fibro" there were much less episodes since the vagal tone became very low. so definitely fibro is related to an unbalanced ANS.

I feel more anxious in the morning, it gets better in the evening but still cant fall asleep at all not matter the time of the day. Only by taking ambien i can manage it for few hours.

I have tried melatonin in high dose and CBD, they didnt make any difference.

I would not go for xanax again, all my strange brain sensations before the onset of fibro started when i was prescribed xanax for sleeping.

I am currently taking 10mg of escitalopram. Should i better switch to another antidepressant?

so much of GABA do you take ? do you take it alone or combined with any other medication or supplement?

thank you so much, i am really desperate to find a solution.
I am trying to update my reply because I see that you answered a lot of questions with Jay. Unfortunately, my reply can't be edited right now 🙄. Disregard any duplicate advice
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,630
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I am trying to update my reply because I see that you answered a lot of questions with Jay.
Actually: Thanks for this, sweetkamie, I hadn't checked that. 😊 So...

Can you detect any triggers when you wake up after the zolpidem/Ambien has lost its effect?
Like local pains, bedclothes, air, itches, IBS, bladder etc. Waking you up or stopping you falling asleep.

How's your general sleep hygiene, do you do everything that's recommended?
E.g. what do you do when you're wide awake: what you're sposed to do is get up out of bed & bedroom.

Before or while weaning off it, I'd suggest trying various relaxation types once you've woken up:
My first suggestion would be Yoga Nidra - Ally Boothroyd's 1 hour insomnia video has loads of bits.
Aside from it being comforting and relaxing for me, I often find it a great sleep substitute, even better than shallow sleep.
Also as you've been talking "vagal" I worked thru a few of Suzie Baxter's video for you and me today, and like I thought found the ear massaging one best for lying in bed.
(This won't help you I don't think but my own aim & success btw has been learning to get deep restorative sleep despite having to get up 4-8x per night. So if I feel "wide awake" I have 2-3 strategies to get tired again and if they don't work I stay up and do stuff that doesn't activate me too much, but may tire me a little. Usually in my case after a 2 hour break I'm tired again. Yoga Nidra I use in emergencies, for instance an appointment etc.)

Edit: During my bedtime routine just now it occurred to me that passiflora = passionflower has proof for it to help sleep (my first psychiatrist was the first to recommend it) and won't interfere with the meds.
Secondly, another part of sleep hygiene is not to beat yourself up for not sleeping. I actually look for and use the positives, how much more I can get done / do on those days where I hardly sleep!
Thirdly, if you've been to a sleep lab to check for the whole variety of things.... (One of the sleep lab psychiatrists became a real help for rehab and guinea pig stuff. And I don't think that was just luck, I think it takes an interest people to choose that sort of speciality.)

How strange: When I try to save or edit with the blushing face in it, it goes "Oops, we've run into some problems". When I take it out I can save it. Then I put just that back in and I can save it again. Weird. 🤪
Same now went for a zany face. Workaround: just write the code in it similar to :zany face:
Why me? Praps my posts are too long to copy for emojis....!
 
Last edited:

JayCS

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Messages
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DX FIBRO
Diagnosis
02/2020
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Been realizing that I got side-tracked by you jumping on GABA, just cos sweetkamie and I use it. Once you've started trying things that others suggest, you'll find that it's not at first about what single people say, it's about what we think/recommend might most likely help.
And that as far as supps go would be for many magnesium (most'd say glycinate, but for some like me it wakes us up, so I prefer malate), CoQ10, rhodiola and passiflora, of the B-vitamins B6 (as P-5-P) most likely. Then it starts getting rarer: GABA , which I balance with glutamine and theanine, all of which can help for sleep (theanine personally wakes me up), NAC, resveratrol, PQQ, lastly honokiol and (expensive) luteolin.... Many say Epsom salts (magnesium sulphate) in a warm bath helps them, altho it's not proven that magnesium can pass the skin, but maybe they can, or it's the sulphate or the warm bath or placebo.
And of course the normal things to try for sleep are valerian and hops - didn't do anything for me though, and are generally not talked about much for fibro, not sure if people try it at all, but no reason not to.
And none of these should normally cause interactions with your meds, except as said the GABA.

Warm baths: What do warm baths or warm or very short cold showers do for your sleep? They help many,. My speciality is cold showers, even several times a night.

Another sleep hygiene thing most people don't realize altho it's proven: We sleep more than we think we do and we dream that we are awake. So I actually count dozing and Yoga Nidra as real sleep, altho dozing may appear to be shallow and Yoga Nidra may be deep, but not necessarily sleep, but something similar. Remember meditation esp. in the advanced case of Zen monks can replace sleep to a certain extent.

Getting your bloods checked for deficiencies is of course always a good idea, and B12 and D3 are first in line, which may help with pain, but then also praps sleep. But also minerals like iron (indirectly also for sleep), zinc and in my case copper (but both for other things than sleep).

Right, tonight I broke my record for the amount of sleep breaks:
8h13, up 12x (2h43), trying vagal ear exercises and >1h of Yoga Nidra.
Main cause may have been acupuncture yesterday. Main mistakes were bed too late and after getting a burning stomach at 5 forgetting to add 10 almonds to my few mouthfuls of muesli. Another slight mistake staying up unnecessarily long once 30' (other times long(er) 55', but necessary).
Main asset: It didn't annoy or irritate me, it was fun and actually kind of funny. I love making a tingly feeling in my toes doing Yoga Nidra, and I'm managing to increase it in my fingers too, kind of stim.
I could have stopped at 5h, but know that it's important for my energy/fatigue to break the 8h mark.


I learnt and practiced vagal ear exercises yesterday and adapted them tonight.
My main problem with them is that they strain my body, esp. if I try to do the full 2x30'' Sukie suggests.
I'm not sure if it's the fact that I have to hold my arms up that long and exert a little bit of pressure or whether it's just that the vagal nerve isn't my problem. It seemed to make me jittery. So after similar problems the first 3 times at night I decreased to 2x15''. Which was OK and did cause the "sigh" effect like Yoga Nidra and other relaxation, but didn't help sleep more. Again the strain on my arms made it necessary to develop positions where I don't have to hold them up, like if it's the ear I'm not lying on to "wedge" one arm supporting the other with it. I didn't detect any difference in breathing, heart thump etc. (Not like acupressure for immediately stopping panting does for instance.) But miamisunset, I'd still recommend you trying it, since you were emphasizing the vagal connection in your case.

Edit: One of the 2(?) videos on youtube about vagal nerve and fibromyalgia is a fibromite (In spite of F.) recommending a TENS unit for nerve problems, pain etc, and she . I get seizures from electrotherapy, so I forgot it. But that video and @Auriel talking about her nerve pain and wondering if she should .... take some exotic flower without any evidence.... ;-) has made me remember. @sunkacola uses it for all kinds of tingling and nerve pains. That youtuber also uses a cold wet washcloth on her forehead for vagal anxiety - sort of the baby version of my cold showers... :cool:. Also humming "Om" for a vocal chord stimulation, but also gargling with warm water etc.
The other one has "6 Easy Vagus Nerve Resets" is similar: 1) Deep belly breathing, 2) Humming, 3) Deep Belly Laughing, 4) Gargling with water, this time cold... 5) Massaging Sides of Neck 6) Prayer
 
Last edited:

JayCS

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Joined
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Messages
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DX FIBRO
Diagnosis
02/2020
Country
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i have ordered GABA from the shop and will take some time to arrive. I really hope it will help me
Will you be starting with 125mg sublingually? If you find you want to increase it, but it's going wrong, you might like to balance it out with glutamin, i.e. the serotonin with dopamine (I need the ratio 3:1 GABA to glutamine).

Of the 6 Easy Vagus Nerve Resets I've listed above, I'm thinking for night times 2) Humming (Om) 5) Massaging Sides of Neck & 6) Prayer would be some things I could do in addition to all the Yoga Nidra techniques.
 

miamisunset

Member
Joined
Jul 28, 2022
Messages
13
Been realizing that I got side-tracked by you jumping on GABA, just cos sweetkamie and I use it. Once you've started trying things that others suggest, you'll find that it's not at first about what single people say, it's about what we think/recommend might most likely help.
And that as far as supps go would be for many magnesium (most'd say glycinate, but for some like me it wakes us up, so I prefer malate), CoQ10, rhodiola and passiflora, of the B-vitamins B6 (as P-5-P) most likely. Then it starts getting rarer: GABA , which I balance with glutamine and theanine, all of which can help for sleep (theanine personally wakes me up), NAC, resveratrol, PQQ, lastly honokiol and (expensive) luteolin.... Many say Epsom salts (magnesium sulphate) in a warm bath helps them, altho it's not proven that magnesium can pass the skin, but maybe they can, or it's the sulphate or the warm bath or placebo.
And of course the normal things to try for sleep are valerian and hops - didn't do anything for me though, and are generally not talked about much for fibro, not sure if people try it at all, but no reason not to.
And none of these should normally cause interactions with your meds, except as said the GABA.

thank you, i have ordered GABA and i have already L-theanine.

Warm baths: What do warm baths or warm or very short cold showers do for your sleep? They help many,. My speciality is cold showers, even several times a night.

I tried everything. Cold shower, cold baths... i went for TMS therapy and this actually helped me few times to fall asleep but then i used to wake up few hours later feeling totally cold and with a fast heartbeat (but not because of the arrythmia but because of the cold body feeling). I have no idea what is this feeling about. I guess i should go to a sleep study to find out more. What do you think?

Another sleep hygiene thing most people don't realize altho it's proven: We sleep more than we think we do and we dream that we are awake. So I actually count dozing and Yoga Nidra as real sleep, altho dozing may appear to be shallow and Yoga Nidra may be deep, but not necessarily sleep, but something similar. Remember meditation esp. in the advanced case of Zen monks can replace sleep to a certain extent.

Getting your bloods checked for deficiencies is of course always a good idea, and B12 and D3 are first in line, which may help with pain, but then also praps sleep. But also minerals like iron (indirectly also for sleep), zinc and in my case copper (but both for other things than sleep).

B12 and D are fine for me. But i didnt check ferratine or copper.

Right, tonight I broke my record for the amount of sleep breaks:
8h13, up 12x (2h43), trying vagal ear exercises and >1h of Yoga Nidra.
Main cause may have been acupuncture yesterday. Main mistakes were bed too late and after getting a burning stomach at 5 forgetting to add 10 almonds to my few mouthfuls of muesli. Another slight mistake staying up unnecessarily long once 30' (other times long(er) 55', but necessary).
Main asset: It didn't annoy or irritate me, it was fun and actually kind of funny. I love making a tingly feeling in my toes doing Yoga Nidra, and I'm managing to increase it in my fingers too, kind of stim.
I could have stopped at 5h, but know that it's important for my energy/fatigue to break the 8h mark.


I learnt and practiced vagal ear exercises yesterday and adapted them tonight.
My main problem with them is that they strain my body, esp. if I try to do the full 2x30'' Sukie suggests.
I'm not sure if it's the fact that I have to hold my arms up that long and exert a little bit of pressure or whether it's just that the vagal nerve isn't my problem. It seemed to make me jittery. So after similar problems the first 3 times at night I decreased to 2x15''. Which was OK and did cause the "sigh" effect like Yoga Nidra and other relaxation, but didn't help sleep more. Again the strain on my arms made it necessary to develop positions where I don't have to hold them up, like if it's the ear I'm not lying on to "wedge" one arm supporting the other with it. I didn't detect any difference in breathing, heart thump etc. (Not like acupressure for immediately stopping panting does for instance.) But miamisunset, I'd still recommend you trying it, since you were emphasizing the vagal connection in your case.

never tried the vagal ear exercise but i saw you posted the video in the other forum so i would give it a try, thanks a lot

Edit: One of the 2(?) videos on youtube about vagal nerve and fibromyalgia is a fibromite (In spite of F.) recommending a TENS unit for nerve problems, pain etc, and she . I get seizures from electrotherapy, so I forgot it. But that video and @Auriel talking about her nerve pain and wondering if she should .... take some exotic flower without any evidence.... ;-) has made me remember. @sunkacola uses it for all kinds of tingling and nerve pains. That youtuber also uses a cold wet washcloth on her forehead for vagal anxiety - sort of the baby version of my cold showers... :cool:. Also humming "Om" for a vocal chord stimulation, but also gargling with warm water etc.
The other one has "6 Easy Vagus Nerve Resets" is similar: 1) Deep belly breathing, 2) Humming, 3) Deep Belly Laughing, 4) Gargling with water, this time cold... 5) Massaging Sides of Neck 6) Prayer

I tried most of those except the gargling. I also heard "jumping" is good for vagus nerve but i guess it is difficult for fibro people.

thanks a lot for all the information
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,630
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
thank you, i have ordered GABA and i have already L-theanine.
Ah, OK, not sure how far you can skip the glutamin tho. Theanine influences both serotonin and dopamine, so it's not easy to know what it does, it's trial, error and adjustmen.
I tried everything. Cold shower, cold baths... i went for TMS therapy and this actually helped me few times to fall asleep but then i used to wake up few hours later feeling totally cold and with a fast heartbeat (but not because of the arrythmia but because of the cold body feeling). I have no idea what is this feeling about. I guess i should go to a sleep study to find out more. What do you think?
Ah, I was wondering if you'd done TMS (for the others: Transcranial magnetic stimulation, sort of TENS for the brain, working from the brain down to the body, instead of like TENS and tVNS from the body up to the brain.)
But i didnt check ferratine or copper.
Not first in line, but next time you get bloods drawn anyway...
"jumping" is good for vagus nerve but i guess it is difficult for fibro people.
My acupressurist taught me a jolt jump technique that may be a good comprimise. From maybe a sitting position you jump up just once (or twice) and jolt yourself on your heels with straight knees as you normally would never do. Sends a jolt thru the whole body. Another exercise of hers was to loosen yourself like a jointed doll or something and bob up and down on your toes - just a little is enough. Quick relaxation of all muscles etc. Both even OK and good for me at night as both can be done in 5 seconds without stirring up your blood. And funny and silly, with your arms flailing around in all directions. Laughing welcomed. 😂 Sort of "laughing micro- or nano yoga". (BTW Why don't we fibromites talk micro yoga more? = Suksham Yoga/Vyayam, e.g. youtuber manoyogi, or for finger nerves problems etc. youtuber Stock Market Guru. I actually meant it in the sense I do yoga tho: Everything in 10-20 second stints, much shorter than usual.)
 
Last edited:

Caylee

New member
Joined
Aug 6, 2022
Messages
4
Reason
DX FIBRO
Diagnosis
09/2001
Country
CA
State
ON
I would respectfully like to give you some advice. But from the sounds of it, you may already be doing so.

In Canada our health care system is failing. I can't even tell you how without writing a book. But I have learned a very valuable lesson because of this.

When being diagnosed or for anything really, you are your best advocate!

I should note that prior to this, and growing up, I could depend on our health system to take care of anything. You asked, it happened. You were sick, you were cured. Short wait times or none at all.

But slowly things have changed. An example of this is that there is a 13-18 month wait for simple cataract surgery! It also took me months just to initially see a specialist in the first place!

But I have learned. Now if somethings wrong, and is known by my GP, I push. I will call every week looking for cancellations. If there is a test I think is pertinant, you have to almost drmand it, but professionally and politely. The medical profession knows the situation, make no mistake. But that brings me back to my point.

I can't imagine why all those doctors dropped the ball on not giving you the one test that would have made uour life so much easier. Poor you.

Was the test denied you or was it overlooked? Did you mention that test or fid you not know of it.

As for if you can get FM overnight, I have 2 friends that this happened to. Swept the feet right out from under them. But I think this is the exception rather than the rule.

My journey started with the Epstein Barr virus, moved to chronic fatique, and then because of pain I was sent to a Rheumatologist. Which at the time was the only person that could legally diagnose people with FM. That has changed over time. Thankfully.

I wish you the best regards in going forward. I'll keep my fingers crossed for you.
♥️✌️
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
267
But slowly things have changed. An example of this is that there is a 13-18 month wait for simple cataract surgery! It also took me months just to initially see a specialist in the first place!
Wanted to take a sec to say I love Canada/Canadians and lived there from 2002-2005 and was shocked by the quality of care 😢. 22 year old friend waited 4 months for a biopsy. Another had a 4 month wait for life threatening gall bladder infection. I had my own disturbing experiences, too. Heart goes out to you. You are a fibrowarriors!
 
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