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

[miamisunset]

Hello

This is my sad story and i would like to know if it makes sense as a new fibro

In June 2021 I caught covid (delta variant) and a few days later I had symptoms of thrombosis because I had a high d-dimer. At the end of June I had symptoms of syncope (caused by a very strong arrhythmia that was triggered by covid) and I went to the hospital (ParkView) in Dubai. Since my D-dimer was still high, they did all kinds of tests, including lung MRI to see if I had blood clots (they thought it was something related to covid). Everything except the ECG that could have detected that everything was caused by an arrhythmia. Funny enough any ambulance in Dubai would perform first an ECG as part of the protocol to take a patient. But they don’t follow this protocol at the hospital.

In July 2021, suspecting that it could be something from the heart, I went to two different cardiologists in Dubai (one German at Mediclinic and one Indian) who practically did the same tests, echocardiography of the heart, resistance test, etc. All very well. But none of them thought of putting me on a Holter monitor to check my heart 24 hours a day, which could have perfectly discovered the arrhythmia. Back then I didn't know what a Holter was so it didn't even came to my mind to ask them for this test.

At the end of July 2021 I was still dizzy and went to another doctor. He told me my problem was that I had insulin resistance/prediabetes so I became convinced that my dizziness was caused by high blood sugar. Thus, from August to December I continued to have sporadic episodes of arrhythmia but I always attributed them to my metabolism. I exercised a lot and lost a lot of weight.

The episodes became more and more recurrent as occurs with arrhythmias, they were almost always at night but I still didn’t know it was my heart. They were also triggered after coffee so I stopped drinking it.

At the end of December 2021, the maid brought the covid home and I was the last to get it. Unfortunately, I was very ill and very weak for almost a month, and of course it was because the arrhythmia was very active during the illness.

At the end of January 2022 and when I was already recovered, I had an episode in the morning with a very high heart rate that almost made me faint, so I went to the emergency room of Zahra hospital They did all kinds of tests except again the echocardiogram/ECG that would have detected the arrhythmia. As a follow-up to this episode, I had tests with different doctors at the hospital but none of them discovered anything except that they confirmed that I did not have any type of prediabetes.

The arrhythmia became more and more frequent and I sometimes woke up with it. So searching the internet I discovered that I could do an echocardiogram/ECG with the apple watch. So I found out on the night of Feb 5th in February 2022 that I had vagal-type atrial fibrillation. At this time the arrhythmia was very symptomatic and every night I had afib in my deep sleep (which is what happens when it is of vagal origin and when my heart beats slowly). All the medicines that they gave me in the hospital did not work since the arrhythmia was very strong and was triggered by the vagus nerve (for which I had in a very high tone). I tried different medicines but nothing worked. Every night I slept only 2-3 hours and the arrhythmia lasted for hours until it went away. I developed insomnia. I had a lot of tension and high stress.

At the beginning of March 2022, I looked for doctors to do a heart ablation for me and I confirmed that by mid-April I was going to have the ablation

Meanwhile I couldn't sleep, the arrythmia was brutal and the only thing they prescribed me in the hospital to sleep was xanax (alprazolam) which gave me very strong secondary symptoms since I felt very strange sensations in my brain. All I wanted was to sleep and not a drug for anxiety to sleep. The arrythmia continued to be triggered quiet often, every time I was lying down or after meals, as it is typical of vagal afib.

The months of Feb and March were of extremely exhaustion, I slept sometimes only 2 hours in 48 hours. I was extremely anxious and the arrythmia was absolutely hellish. I felt very alone with almost no help from anybody.

At the end of March I received from Spain some new heart pills (disopyramide) that the cardiologist in Dubai told me I could take. So I started taking a new medication that seemed to be effective because it has very strong anticholinergic effects against the vagal nerve and is the medication recommended for vagal-type atrial fibrillation. I didn't have much choice at that time to take medication as I started having atrial ectopics during the day that were also triggering the arrhythmia (I usually only had afib at night after lying down or after drinking coffee/eating, which is typical of vagal atrial fibrillation). I had a lot of anxiety and stress because I was afraid that the arrhythmia was going to become permanent and every time I had it I couldn't breathe well so I was very afraid.

Unfortunately a week before my ablation I suddenly began to experience widespread pain in my body, in the back, in the chest, in the belly... and very strong in the legs. I was in so much pain that it was impossible for me to travel anywhere.

I went to the hospital and they told me that these effects must be from the last pills because they had no other explanation. So I spent several days in the hospital and switched to an old medication that hadn't worked for me before (which was starting to look suspicious because it meant something had changed in the body). Back home the pain continued and remained for days.

I went to a rheumatologist and a neurologist. The rheumatologist had no explanation at first for these pains and a burning sensation in the back. He did all kinds of blood tests and there was no trace of immune disease. He agreed that it could be fibromyalgia but he had never seen such an acute case of fibromyalgia to develop in such a short time. However, he said that a post-traumatic stress event could trigger something like this like it happened in war veterans. The neurologist did different tests and through a qEEG he can see that there is a dysfunction since the brain has overactivated the neural pathways of pain as it happens with fibromyalgia patients. The neurologist thinks that it might be still possible to get out of this condition but that it will take time and I will need to do many treatments.

At the moment and unfortunately the pain and the immense daily fatigue is still there. I haven't slept naturally for months, only with sleeping pills (zolpidem). I have tried many treatments but at the moment my body seems to be stuck in sympathetic mode.

In May 31st I had the surgery (ablation) for the atrial fibrillation.

At the moment I am trying to recover from the ablation and also trying to seek help from doctors to treat this fibromyalgia what is causing me daily pain and feeling so unwell.

Have anybody experienced such onset of this illness? From one day to another? Does it make sense?

Thank you and regards

Jos

 

[JayCS]

Hi Jos, and welcome in!
I hope it's OK that I'm trying to divert further posts to the more dramatically titled more recent thread.... to not confuse everybody. You could delete the other one (I'm not sure how long newbies can though).

Wow, that's a vehement course. Sorry to hear that. I can understand you thinking it may become fibromyalgia .... however you've only had this major pain since 24th May = for 2 months, whilst a necessary criterion is 3. Also heart problems as cause and as you say such a severe onset are a bit unusual, whilst over-activated neural pathways of pain aren't specific to fibro. So I still think you've got a good chance of the pain being a severe "side effect". But that doesn't mean it isn't going to become (secondary?) fibromyalgia. Also according the 2016 ACR criteria you can have both, according to them fibromyalgia is no longer a diagnosis of exclusion.

For anyone not able to read/get the whole post:
The sudden onset of pain came on around the 24th of May, one week before the ablation (heart scarring with heat or cold) for the atrial fibrillation (= A-fib). Conditions that lead up to it were
a) Covid-triggered heart problems June/July 2021,
b) worsening of the arrhythmia,
c) the 2nd Covid Dec 2021,
d) adding anxiety and stress.
What we don't know is if maybe you had a physically or mentally tough life before that. That would be more in accordance with most of our experiences than a sudden heart condition.

Whether it is fibro or just very similar, everyone does well to read and implement @sunkacola's Big Advice Post at the top of the General forum as well as all the other ideas we keep throwing around here.

I had many conditions before fibro (stomach/gut/skin/back/nerves/anxiety/seizures...), a tough life, got my health, fitness and life well under control though. But then, praps after swine flu, I got gradually more Ache waves and stiffness ending in also a "fairly brutal" & sudden onset of a full constant flare of severe fibro, immediately taking me off work. My wife could see this coming, I couldn't, so a sudden onset may be a matter of being distracted by too many other things going on before, in your case the heart problems and stress, which via cortisol may have overridden the pain - does mine. The last straw (if it was necessary) will have been doc treatments like Western acupuncture and meds. Once I'd left their various mills completely behind me, I could start getting a grip on everything and a bit of work again, until jab-triggered MCAS smashed me down again - more via additional fatigue, but also additional pain, and it took about 2 weeks for each jab to fully unfold its effect, the 2nd "better" than the first, but again a very clear onset. (OK, just looked it up on my fibro blog, the 1st jab took 4 days, but I did have some good days after that and it gradually seemed to get better after 2 months (of supps), similar the 2nd jab 4, 5 days, bottom level at day 10 and haven't really recovered from there almost 6 months later, as activities hardly possible despite many treatments.)

 

[miamisunset]

thank you Jay so much for your answer

My life was fairly ok before the covid in June 2021. I was very happy and had not stress and no other medical condition.

After I got covid in June 2021 my d-dimer was very high and i had to rush to emergency. They did all kind of tests except to run the ECG. I followed up with two cardiologists and they didnt find any problem. But they never ran a holter for me so they were not able to find the atrial fibrillation. I kept having episodes and having anxiety. But my anxiety got better in November/December 2021 until i got covid again.

I am facing lots of anxiety/depression because i dont understand this onset of "fibro". I dont have most of the fibro points but i have widespread pain and the insomnia typical of fibro.

I did the ablation in 31st May but the first planned one was mid of April as i mentioned in the post. So my pain started at beginning of April and was brutal. Now the pain is not so strong as the beginning but it has been always there since the first day.

MRI, nerve tests, blood tests, etc all kind fine. No sign of problem in the body.

I am really puzzled by this onset of the "fibro" but also as i mentioned i was under huge stress/anxiety/imsonia the days before it started because the arrythmia kept waking me at night. i dont know if it could be related to long-covid but i had no pain before it started.

Any other suggestion is welcome. Not sure if there is fibro perso who ever experienced such onset.

By the way during the days i had the arrythmia I used a device for transcutaneous vagus nerve stimulation (tVNS) which was supposed to reduce the afib episodes. With very low intensity i could feel already the stimulation of my ear and vagus nerve. When i use now the same tVNS i need to apply the highest intensity to feel stimulus from my vagus nerve while before the onset of the fibro i only needed a low intensity to achieve the same. So definitely the parasympathetic system is in very low tone after this "fibro". It would be interesting if other fibro members could try the same device and need also high intensity to achieve stimulation. This would point to the fact the fibro people have low paraysympathetic activity.

 

[JayCS]

Ah, I missed that it was meant to happen in April and didn't - I presume due to the severe pain:

I confirmed that by mid-April I was going to have the ablation .... Unfortunately a week before my ablation

dont have most of the fibro points but i have widespread pain and the insomnia typical of fibro.

The tender points have been ditched by researchers and it's getting thru to most docs, so that doesn't count. Widespread pain in most limb and spine areas is a prerequisite. Insomnia alone couldn't be a severe enough further symptom, but you'll be full scoring 3 on it, and also on fatigue, and that alone puts you on 6, which is enough if 7 or more body parts are in pain.

i dont know if it could be related to long-covid but i had no pain before it started.

Long Covid is of course an option as well. If we take the 2016 criteria seriously it can be both.

Not quite sure before what started. But I guess you mean between June 2021, 1st bout / Dec 2021, 2nd bout of Covid and the onset of the pain in April 2022.

Not sure if there is fibro perso who ever experienced such onset.

Nor am I, but we're all different - no one's experienced an onset like me either.

When i use now the same tVNS i need to apply the highest intensity to feel stimulus from my vagus nerve while before the onset of the fibro i only needed a low intensity to achieve the same. So definitely the parasympathetic system is in very low tone after this "fibro". It would be interesting if other fibro members could try the same device and need also high intensity to achieve stimulation. This would point to the fact the fibro people have low paraysympathetic activity.

Usually researchers say our total nervous system is overactivated, the central sensitisation syndrome theory as 'cause' of fibromyalgia. I don't buy this for my form of fibromyalgia however.
I doubt anyone will try the tVNS. But actually there are a few preliminary studies on pubmed showing that maybe it is the case:
Parasympathetic Reactivity in Fibromyalgia and Temporomandibular Disorder: Associations With Sleep Problems, Symptom Severity, and Functional Impairment, 2015.
However they relate this to the TMD, no people are examined without it, and they relate it to psychosocial factors. On the other hand they are looking at CVD problems, which again fits to you. The respiratory sinus arrhythmia they refer to is of course fairly normal, and nothing like yours.
This article from 2020
Reduced activity, reactivity and functionality of the sympathetic nervous system in fibromyalgia: An electrodermal study
despite concentrating on the sympathetic nervous system (using sweating as an indicator symptom) at the beginning mentions "Previous studies found reduced parasympathetic activity and sympathetic reactivity to physical and stress manipulations." and
"This evidence suggests reduced parasympathetic and sympathetic autonomic activity and reactivity in FMS." (and another more similar but more complicated quote, if you're interested)

No idea if this thread's of any help: Has anyone had Vagus nerve therapy?

What is beautiful about the 2020 study is that we can follow how it has been peer-reviewed. That means at the end, criticism has been taken up and the article changed accordingly and all this is documented at the end. I'm definitely gonna save this article before they praps delete that bit. Whoops, that's got my proxy blocked by pubmed...

 

[miamisunset]

Ah, I missed that it was meant to happen in April and didn't - I presume due to the severe pain:


The tender points have been ditched by researchers and it's getting thru to most docs, so that doesn't count. Widespread pain in most limb and spine areas is a prerequisite. Insomnia alone couldn't be a severe enough further symptom, but you'll be full scoring 3 on it, and also on fatigue, and that alone puts you on 6, which is enough if 7 or more body parts are in pain.

Long Covid is of course an option as well. If we take the 2016 criteria seriously it can be both.

ok i see

Not quite sure before what started. But I guess you mean between June 2021, 1st bout / Dec 2021, 2nd bout of Covid and the onset of the pain in April 2022.

i meant the pain

Nor am I, but we're all different - no one's experienced an onset like me either.

But i am having a hard time to find someone who experienced it like me.

Usually researchers say our total nervous system is overactivated, the central sensitisation syndrome theory as 'cause' of fibromyalgia. I don't buy this for my form of fibromyalgia however.
I doubt anyone will try the tVNS. But actually there are a few preliminary studies on pubmed showing that maybe it is the case:
Parasympathetic Reactivity in Fibromyalgia and Temporomandibular Disorder: Associations With Sleep Problems, Symptom Severity, and Functional Impairment, 2015.
However they relate this to the TMD, no people are examined without it, and they relate it to psychosocial factors. On the other hand they are looking at CVD problems, which again fits to you. The respiratory sinus arrhythmia they refer to is of course fairly normal, and nothing like yours.
This article from 2020
Reduced activity, reactivity and functionality of the sympathetic nervous system in fibromyalgia: An electrodermal study
despite concentrating on the sympathetic nervous system (using sweating as an indicator symptom) at the beginning mentions "Previous studies found reduced parasympathetic activity and sympathetic reactivity to physical and stress manipulations." and
"This evidence suggests reduced parasympathetic and sympathetic autonomic activity and reactivity in FMS." (and another more similar but more complicated quote, if you're interested)

No idea if this thread's of any help: Has anyone had Vagus nerve therapy?

What is beautiful about the 2020 study is that we can follow how it has been peer-reviewed. That means at the end, criticism has been taken up and the article changed accordingly and all this is documented at the end. I'm definitely gonna save this article before they praps delete that bit. Whoops, that's got my proxy blocked by pubmed...

what is very interesting is that this tVNS device stimulates the vagus nerve but after the onset of the pain i had to apply a much higher intensity in order to feel the stimulation (the scale of intensity goes from 0 to 45, now i need to set it at 45 in order to feel the stimulation, before only 28). If i give it to someone who is healthy then the person needs only a value below 30 in order to "feel" the stimulation of the vagus nerve. So it is like a scientific proof that the parasympathetic system is at much lower tone than it used to be. So i believe if there is a cure for this syndrome is probably with something which will stimulate the vagus nerve to its normal degree and re-balance the ANS. Does it make sense?

 

[JayCS]

But i am having a hard time to find someone who experienced it like me.

I'm not any more - I've given up...
I remember desperately looking for people with esophagus blocks like me, believing it might be due to muscular cramps. In the fibro clinic I met someone, but it didn't do anything for me. Then it got worse after a gastritis and I got it looked at (again) and it turned out it had become am impressively visible stricture, probably caused by decades of GERD/reflux/heartburn....
So I think we can use individual ideas of others and our own, but essentially we're in most of it alone - together...

So it is like a scientific proof that the parasympathetic system is at much lower tone than it used to be. So i believe if there is a cure for this syndrome is probably with something which will stimulate the vagus nerve to its normal degree and re-balance the ANS. Does it make sense?

Well, yes, it's an idea, but one of many, and as yet it only proves it for your form of pain/fibro. There are about 8-10 ideas about causes of fibro plus about 10 sets of biomarkers. From these ideas we can infer many potential cure ideas, but in all these areas we are so far away from any real scientific proof, esp. as fibro may be an umbrella condition of many subgroups. That's the only way I can see an explanation for the huge variety and overlaps with other conditions like CFS and MCAS.
I have several reactions which seemed to prove that I have no CNS/CSS involvement, altho this is the main hypothesis. And others like feverishness when I overdo it which to me suggested that I may have an autoimmune condition, also it reacting to cryotherapy and cold showering, which improves cytokines, which again might be autoimmune or immune. But quite apart from this only being me, I then realized it is a type of tiredness probably coupled with cortisol, also it may come from my other main condition, MCAS.
More important I think is to use these ideas of ours regarding our symptoms and reactions to develop our own strategies and treatments now, way before the researchers manage to get a better handle on the complexity and individuality of it all ... in a few decades is my guess....unless machine learning accelerates that.

 

[miamisunset]

I'm not any more - I've given up...
I remember desperately looking for people with esophagus blocks like me, believing it might be due to muscular cramps. In the fibro clinic I met someone, but it didn't do anything for me. Then it got worse after a gastritis and I got it looked at (again) and it turned out it had become am impressively visible stricture, probably caused by decades of GERD/reflux/heartburn....
So I think we can use individual ideas of others and our own, but essentially we're in most of it alone - together...

But see the GERD has a direct impact on the vagus nerve so we are not far from each other.

Well, yes, it's an idea, but one of many, and as yet it only proves it for your form of pain/fibro. There are about 8-10 ideas about causes of fibro plus about 10 sets of biomarkers. From these ideas we can infer many potential cure ideas, but in all these areas we are so far away from any real scientific proof, esp. as fibro may be an umbrella condition of many subgroups. That's the only way I can see an explanation for the huge variety and overlaps with other conditions like CFS and MCAS.
I have several reactions which seemed to prove that I have no CNS/CSS involvement, altho this is the main hypothesis. And others like feverishness when I overdo it which to me suggested that I may have an autoimmune condition, also it reacting to cryotherapy and cold showering, which improves cytokines, which again might be autoimmune or immune. But quite apart from this only being me, I then realized it is a type of tiredness probably coupled with cortisol, also it may come from my other main condition, MCAS.
More important I think is to use these ideas of ours regarding our symptoms and reactions to develop our own strategies and treatments now, way before the researchers manage to get a better handle on the complexity and individuality of it all ... in a few decades is my guess....unless machine learning accelerates that.

Yes i a gree. Fibro is an umbrella for many subgroups which commonly share symtoms but nothing more... sigh :-(

 

[JayCS]

GERD has a direct impact on the vagus nerve

Now you've got me curious. From reading it up, it seems it's all very hypothetical, not well proven, a hunch.
I'm also not sure which way round it might be, or if it is a vicious circle/cycle.
Two pages say it's the vagus that impacts the stomach motility, building acid up. Interesting take on it.
The 3rd says that too, but that the acid again stimulates the vagus nerve, which can cause problems in sinuses, larynx & pharynx.
However the 1st page by a DO says reducing carbs will help, which I've done for decades.
Also I doubt GERD / all hyperacidity is caused by the vagus nerve.
But I'll have a go at the vagus nerve exercises for this I was actually recommending to you....

Spoiler: Sources & citations

your-heartburn-is-actually-a-neurological-problem by a US internist(?) called Nemechek DO,
"It seems the sequence of events surrounding carbohydrate toxicity unfolds as follows:

1. Consume excessive amounts of carbohydrates for many months to years.
2. Carbohydrates cause your autonomic nervous system to operate erratically.
3. Insulin resistance develops with continued excessive carbohydrate consumption.
4. Diseases such as diabetes, high blood pressure, gout, heart attacks or strokes follow after progressive worsening of insulin resistance.

Lower Your Carbohydrate Intake to Reverse Heartburn
It strikes some patients as overly simplistic to say that if you reduce your carbohydrate intake, your heartburn will be greatly reduced within a few weeks and you probably won’t need any more antacids within 1 month.
Fortunately for you, it is this simple.
I have my patient reduce their carbohydrate intake (all sugars and starches) intake to less than 100 grams per day to reverse their heart burn.
Not only does their heart burn get better but so does their diabetes, high blood pressure, gout, sleep apnea, bladder irritability, lightheadedness and erectile dysfunction.
Give it a try for a month and I know you’ll feel better than you have in a long time and you won’t be needing to take that expensive Prilosec, Protonix or Nexium any longer."
Vagus Nerve by Cleveland Clinic
Vagus Nerve And Neurogenic Inflammation: Their Role In GERD by Kurt Barret, DO:
"Thus regurgitation of digestive/intestinal contents into the lower esophagus can trigger vagal nerve response that results in tissues swelling, injury, scarring and mucus production in the paranasal sinuses as well as the larynx and pharynx without the affected tissues ever having come in direct contact with regurgitated digestive secretions. Artificial placement of acid into the lower esophagus is proven to result in inflammatory reaction of the paranasal sinuses.

Well... I actually found one preliminary study to support the GERD - sinus connection Gastroesophageal reflux disease and chronic sinusitis: in search of an esophageal-nasal reflex"

 

[sunkacola]

Now you've got me curious. From reading it up, it seems it's all very hypothetical, not well proven, a hunch.

This is the case with pretty much everything a person can find to read that claims to be effective with fibromyalgia, and 100% of the time if something claims to be a "cure".

As always, my advice is caveat emptor.

 

[JayCS]

Thus regurgitation of digestive/intestinal contents into the lower esophagus can trigger vagal nerve response that results in tissues swelling, injury, scarring and mucus production in the paranasal sinuses as well as the larynx and pharynx without the affected tissues ever having come in direct contact with regurgitated digestive secretions. Artificial placement of acid into the lower esophagus is proven to result in inflammatory reaction of the paranasal sinuses.

Well... I actually found one preliminary study to support the GERD - sinus connection Gastroesophageal reflux disease and chronic sinusitis: in search of an esophageal-nasal reflex"

Well, thinking further down this route, it is 'of course' the case that I have an esophagus stricture called Schatzki ring, which may have been caused by decades of heartburn/GERD. But it seems too far fetched that my intermittent nostril / sinus problems come from that. My nostrils often but not close up, mostly in the second half of the night. My sinuses often burn since the jabs, which I can alleviate with more GABA, i.e. it's much easier to attribute it to lowered serotonin caused probably by higher histamine (or cortisol from stress).
Association doesn't mean causation. But interesting all the same. As I said, I'll be keeping it in mind further....

 

[sweetkamie20]

Hello

This is my sad story and i would like to know if it makes sense as a new fibro

Edit: Apologies if this is redundant in some ways. I missed the other responses.

Yes, your story makes total sense to me and mirrors my own experience.

The word hellish sounds very appropriate for your arduous and unfinished journey . You've tried to get to the root of things from many directions and are still searching for answers. I have found this forum to be full of help emotionally and physiologically and I expect that you will as well

He agreed that it could be fibromyalgia but he had never seen such an acute case of fibromyalgia to develop in such a short time.

My onset was severe and immediate. It developed from a staph infection that quickly turned into sepsis. The 2 conditions were so simultaneous that for 18 years I assumed that the fibro flares were actually just a recurrence of sepsis. To this day, I am not sure what sepsis feels like because the two occurred together...

At the moment and unfortunately the pain and the immense daily fatigue is still there. I haven't slept naturally for months, only with sleeping pills (zolpidem). I have tried many treatments but at the moment my body seems to be stuck in sympathetic mode.

The sleeping part is really tough. A lot of us have found ways to promote sleep and sleep quality aside from medications. (I am not suggesting that you abandon a medication that is helping you sleep. It's just that a significant number of people here that are managing fibro don't tolerate medications well or find natural alternatives to be the best all around choice so you might find advice caters to natural alternatives.). JayCS has a lot of insight into potential aids.

Have anybody experienced such onset of this illness? From one day to another? Does it make sense?

It makes total sense. Regardless of the cause, it sounds like you are on the same path towards managing a mysterious problem. Even if you don't classify it as fibro, you have stumbled upon a group of people very in tune with what you're going through.

Welcome to the forum You might find some reassurance on our meme thread at Memes: A Touch of Humor for Us Fibromites.

 

[miamisunset]

thank you so much. Which advice you have for sleeping? I am really suffering from hyper insomnia, i never feel sleeping since the symptoms started

 

[sweetkamie20]

thank you so much. Which advice you have for sleeping? I am really suffering from hyper insomnia, i never feel sleeping since the symptoms started

I lived with what I consider hyper insomnia for 10 years - the kind where your brain feels like a mad scientist willing to stay awake though the brain is so tired it barely can make a decision. In that mode, I finally fall asleep when everyone in the world is waking up.

My hyper insomnia sleep was just 3 hours maybe 4 but it was non-restorative. I'd wake up in a loopy state similar to what you would expect from 1.5-2 hours sleep. 4 hours of non-restorative sleep was what I grew to expect.

I have tried many supplements to facilitate sleeping. I will share my experiences but just know they are unique to me. I am a lot more sensitive to everything (supplements included) and I have a seizure disorder.

Supplements and medications often push me into a bad flare (intense feeling of a fever/burning inside of my upper back/shoulders, neck and head, profuse sweating, and unusual pounding headaches similar to migraines in severity but not effects.) I end up abandoning most aids or restricting their use to times when I really want an extra boost to sleep. There are two aids I prefer.

collagen with tryptophan in it (I use a powder version that I mix with whatever I am drinking): this is my favorite. It has a gentle onset of sleepiness and a very, very small "hangover" or no hangover in the morning. It's not a sedative for me.

lithium oretate: this calms my nerves without making me sleepy at all. However, because it relaxes me it helps me fall asleep. There is literally no hangover for me nor a sudden onset of calm. It's a very smooth transition from one phase to the next. This is why I use it whenever I start feeling anxious whether I want to stay awake or fall asleep.

GABA (not medication, but supplement): GABA does give me the deepest, most restorative sleep which is usually 5 hours and it seems to have stimulated my need for sleep during the day as it does my mother in law. Whereas I used to have some bad dreams, GABA dreams are actually not bad. Maybe a little unusual, but not bad. Sleep onset is so sudden that I don't even realize I am getting sleepy. One second awake, the next second asleep. Midday naps that would usually last 30 minutes turned into 2-3 hour midday naps. Personally, results in a very, very slow wakeup process (2 hours plus) but a relatively mild sleep hangover. The wakeup process is the longest aside for prescription Tramadol (which was absolutely horrible-a heavy sedative-like hangover).

melatonin: I never use anymore. It sometimes helped me fall asleep but not when I had insomnia due to nerves. When it did help me sleep I always woke up even more awake than hyper insomnia alertness exactly 4 hours later. I tried the extended release version to see if it would work but no luck.

There are some others but I can't think of them right now . When I see my husband today, I will let you know

 

[JayCS]

Which advice you have for sleeping? I am really suffering from hyper insomnia, i never feel sleeping since the symptoms started

JayCS has a lot of insight into potential aids.

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?

 

[miamisunset]

I lived with what I consider hyper insomnia for 10 years - the kind where your brain feels like a mad scientist willing to stay awake though the brain is so tired it barely can make a decision. In that mode, I finally fall asleep when everyone in the world is waking up.

My hyper insomnia sleep was just 3 hours maybe 4 but it was non-restorative. I'd wake up in a loopy state similar to what you would expect from 1.5-2 hours sleep. 4 hours of non-restorative sleep was what I grew to expect.

I have tried many supplements to facilitate sleeping. I will share my experiences but just know they are unique to me. I am a lot more sensitive to everything (supplements included) and I have a seizure disorder.

Supplements and medications often push me into a bad flare (intense feeling of a fever/burning inside of my upper back/shoulders, neck and head, profuse sweating, and unusual pounding headaches similar to migraines in severity but not effects.) I end up abandoning most aids or restricting their use to times when I really want an extra boost to sleep. There are two aids I prefer.

collagen with tryptophan in it (I use a powder version that I mix with whatever I am drinking): this is my favorite. It has a gentle onset of sleepiness and a very, very small "hangover" or no hangover in the morning. It's not a sedative for me.

lithium oretate: this calms my nerves without making me sleepy at all. However, because it relaxes me it helps me fall asleep. There is literally no hangover for me nor a sudden onset of calm. It's a very smooth transition from one phase to the next. This is why I use it whenever I start feeling anxious whether I want to stay awake or fall asleep.

GABA (not medication, but supplement): GABA does give me the deepest, most restorative sleep which is usually 5 hours and it seems to have stimulated my need for sleep during the day as it does my mother in law. Whereas I used to have some bad dreams, GABA dreams are actually not bad. Maybe a little unusual, but not bad. Sleep onset is so sudden that I don't even realize I am getting sleepy. One second awake, the next second asleep. Midday naps that would usually last 30 minutes turned into 2-3 hour midday naps. Personally, results in a very, very slow wakeup process (2 hours plus) but a relatively mild sleep hangover. The wakeup process is the longest aside for prescription Tramadol (which was absolutely horrible-a heavy sedative-like hangover).

melatonin: I never use anymore. It sometimes helped me fall asleep but not when I had insomnia due to nerves. When it did help me sleep I always woke up even more awake than hyper insomnia alertness exactly 4 hours later. I tried the extended release version to see if it would work but no luck.

There are some others but I can't think of them right now . When I see my husband today, I will let you know

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