Just over two months ago I got myself a mysterious sickness, and it's puzzling doctors. I've been in bed most of the time, between visiting hospitals.
I have constant dizziness, borderline fainting (but never faint), weakness/fatigue, lots of gas (burping), ringing in my ears, dry skin, I'm losing weight despite moving very little, slow metabolism probably. I randomly get better when I can walk around for a few hours. I also get bad "attacks" when my mouth gets dry, heart races, I can't get up, and I generally feel like I'm dying, but it passes in ~10 minutes.
I had multiple blood tests, which are nearly perfect, except glycated hemoglobin, which is slightly elevated, but not at the diabetes level. I had gastroscopy, X-rays, and head MRI, two EKGs, echocardiogram, all normal. I'm finishing some heavy antibiotic treatment, which seems to have done nothing.
It's all very frustrating, my symptoms fall under so many diseases/conditions, it's extremely hard to pinpoint even with modern medicine. It can be anything from sleep deprivation, dehydration, panic attacks to more serious things like heart infection, arythmia, tumor, cancer, vestibular apparatus disorder, etc.
It's horrible, but sadly it happens.
The only stupid advice i can give you is: Do not give up. Ever.
For my wife it took about 20 years to get her constant pain acknowledged. After that it took more than 10 gyneacologists to even get her diagnosed. We still needed a 2nd opinion to get a decent operation done.
For more than half her life she believed the problem was 'in her head and she should shut up about it'.
Her pain treshold is so high that i feel like a total wimp whenever i complain about pain.
My daughter has this. And PCOS. It also took years for it to be diagnosed correctly. She even had doctors tell her to get psychotherapy because it was "all in your head"!
Moving will have very little affect on your weight loss compared to the amount of calories you are eating. Also, it’d be a high metabolism that’ll cause weight loss, not a slow/low one. Not that this helps, but it’s worth having the basics straight, on the off chance it helps in any way :)
Another unwanted random suggestion, but along with all the medical tests and treatments you're undergoing, you might want to try regular Meditation and Pranayama (Breathing exercises) on the side. Sometimes it has great effects, and it never harms anyone anyway.
I've been through a similar experience to what you've described, starting a bit over 10 years ago. It took till about 5-6 years ago to find useful answers and beneficial treatments. It's taken till the past 2-3 years for real recovery to happen, and it's still ongoing. Meditation has been one item in my tool kit, but several other practices have beneficial too (some mainstream, some heterodox, some physical/medicinal/nutritional, some emotional).
After 10+ years of working with this stuff in myself and others, I've learned to be very careful about what practices to undertake and what advice to offer others, so I won't share anything more here, but feel free to email me (address in profile) if you want some pointers.
Though it's 'net upvotes' right now, I can understand people's apprehensions about this. A lot of people still think it's some sort of a quackery or just plain useless, but a considerable amount of actual research has gone into it by some of the top universities and most have found only benefits.
This article is from a famous and long time Stanford Researcher on the same (who's also studying the effects of meditation on war veterans for quite some time along with other studies):
There are many meditation techniques and you should try different ones. If I may suggest a starting point, take a look at Vipassana. I am not sure if you’re up for a 10 day retreat but look at dhamma.org and check if there are any local chapters around you who might help you in this specific case.
I have done two 10 day courses and served in one over the last four years and my first one almost 7 years ago. It was an experience of a lifetime. But be warned though, it is not for the casual lets-check-this-out minded. Do it if and when you’re serious about it.
Yeah gas might worsen this.. gas might even be caused by dysfunctional vagus though because this would prevent proper peristalsis. Try massaging your neck and see if that does anything, for better or worse.. won‘t cure it of course, but might hint in a direction.
Oh hey, I got almost the same issues here, except for being in bed and constantly dizzy.
random dizziness - check
borderline fainting - check
lots of gas - check
ringing in the ears - check
"attacks" - check, including racing heart, death anxiety
No results in any medical checks as well but for what it's worth I have a lot of the triggers figured out and can mostly avoid them but sometimes it all hits out of the blue and can tie me down to whereever I am for up to 2,5 hours.
What helps me the most is to actually accept these symptoms and work through them when they occur. I have learned over the years that none of those are actually dangerous although it still is hard to use this knowledge when an attack hits.
For me the most common triggers are sleep deprivation, alcohol, cigarettes, fat food and stress but, as I said, I can be on my best for a whole week, sleeping well, eating properly, not drinking or smoking and still get the symptoms randomly out of the blue while working or just walking around town.
Anyhow, it was interesting to read about someone with a seemingly similar condition and all the best for your future!
I used to have horrible panic attacks, waking up out of a seemingly sound sleep. Turns out I have central sleep apnea. Took ~28 years to figure that out. Completely gone with SA treatment.
Lot's of "I am not a doctor" suggestions. I do the same thing myself. My wife (surgeon), often points out that my diagnoses are missing basic things. Even though I studied with her and read all the flash cards.
Just because a doctor hasn't solved your problem yet, doesn't mean you should give up. You don't want to take advice, and self diagnose with web advice.
Now pretend I didn't say all that, and check out BPPV. If it is BPPV, then you can have someone do the Epley maneuver on you and you'll be fine. Dizziness is incredibly stressful, and the rest of your symptoms can be associated with stress. The fact that it comes in waves makes me think that it could be the crystals in your ears moving around.
But seriously. Don't take medical advice from someone who isn't a doctor.
It's a neurotoxin, it's virtually invisible, and has little mainstream awareness.
I had a pretty serious bout with this over the past 2 years, and was similarly frustrated with the vagueness of the symptoms (and correspondingly useless diagnoses from doctors.)
The symptoms are broad, systemic, varied, and hard to pin down, and most doctors aren't familiar with it, much less able to treat. My symptoms didn't exactly match up entirely to yours, but enough overlap to make me raise my eyebrows.
Several of my friends who (same as me) spent time in China had the same. (It's a high-mold environment.)
Please tweet/DM me @fieldse if this turns out to be helpful.
If you have low levels of insulin you might have trouble getting that glucose where it needs to go. If there’s nothing wrong with the production of insulin as such it might be over suppressed. There’s a hormone responsible for suppressing insuline connected to the stomach, forgot what its called, but it’s known that gastric bypass patients can have trouble with this. There is thing called “dumping” which they experience, similar to an anxiety attack, connected to this. Might be an area to look into.
The insulin levels are normal. Though tested only once.
I wish there were cheap and easy tests that you could do at home for the most common things, it would be great to test myself during one of the attacks. Guess we'll have to wait till one of the lab-on-a-chip projects to take off.
I had a friend who lived next to me with similar conditions, he was about 15 years old. He had a lot of weakness, stomach problems. Bloating in his stomach would cause headache. He would have bad itching in his body and his head (probably from the dryness), his hair were falling, and whenever he tried to stand up for a moment he said his vision and hearing would go away and he would see stars in front of him. Then they would come back. And his stomach problems would cause him headaches. The doctor in the government hospital here in India (who provide free treatment) did some blood tests and gave him some antibiotics. When it didn't work he just scolded his parents and told them to go away and just feed him well. Free health care can be like this in my country - there are just too many patients.
His parents could not afford private healthcare. So they decided to go to a local homeopathic doctor who used to charge half a dollar for a visit (compared to ten dollars for private doctors at that time which they couldn't afford).
Amazingly, it worked. It made him feel like going to sleep and the next day he was feeling maybe 50% better. Then he gradually became normal.
But placebo can be powerful. I have seen so many people cured by homeopathy - most of the times from problems that would need antibiotics or pain killers to cure, but sometimes other things too. Homeopathy is very popular in my country and there's a doctor or chemist selling homeopathy on every street.
Now I am not saying that it would work in your case, specially if you consider it to be a placebo and then that you already know it's a placebo. But it might be worth trying out.
You can do some research on the internet for the best homeopathic medicine for your symptoms. I just searched a bit for these symptoms and came across something called carbo veg. Maybe you can read about it and others, find one that you (and hopefully your subconscious mind) are convinced matches your symptoms and then take it. Order it in 30c, not even a single atom of the original substance is left at that point so what you chemically would have would be a drop of pure alcohol in water (hence it would not have any side effect). Ofcourse a homeopath would say that the water has magical properties , but all that doesn't have to matter. All you have to lose is maybe a few minutes of research to pick something that convinces your subconscious mind, and a couple of dollars for the medicine.
Super random, not a doctor -- lyme disease is one test. Another is unidentified food allergy. Close friend had similar symptoms for almost a year. Thought he was dying. Turned out to be lactose intolerance :(
Lyme is very hard to diagnose, often misdiagnosed. "The difficulty in diagnosing Lyme disease is made even more challenging when you consider that the possible number of symptoms totals around 100."
It ranges from lightheadedness to being completely unstable when I have to sit on the floor and crawl. I don't think it's vertigo, the room isn't spinning.
We thought of stress, but my life is actually quite great by most metrics - I don't have to work, great family, I was doing sports, eating decently well.
I would suggest investigating more the "eating well" part, you might eating something that you believe it's good for you but it's actually killing you.
I've been through a rough patch (approx one year) with many similar symptoms. At the end it turned out to just be basically stress-induced Hypochondria. I was manifesting all of these myself, and what got me healthy again was to focus on other things, and basically letting go of those anxieties. Easier said than done, but that was all there was to it. Anyways all the best, hope you get it sorted! :)
The suggestion that somebody sleeps consistently, achieves a normal weight, and reduces caffeine intake, is probably the least contentious advice in the thread. And he's receiving plenty of medical treatment, there's no need to be concerned.
> I had multiple blood tests, which are nearly perfect, except glycated hemoglobin, which is slightly elevated, but not at the diabetes level. I had gastroscopy, X-rays, and head MRI, two EKGs, echocardiogram, all normal. I'm finishing some heavy antibiotic treatment, which seems to have done nothing.
Sorry if I wasn't clear. I feel like I'm dying only during those 10-minute attacks. Other than this sickness my life is as stress free as it gets: enough money, live in a house, no neighbors to irritate me, beautiful area with a lake, great climate, I work on my own programming projects, I play with my kids. I'm also a very zen guy in general, almost nothing sets me off. Think Sam Harris level calm.
I did stop drinking caffeine as soon as I got this sickness. I did have bad sleep patterns, but am fixing them now.
I suppose it's possible that you do have some illness that no doctor has been able to diagnose.
I'm also a pretty calm guy and don't often get "stressed" in the typical sense, but also had similar symptoms to you which also couldn't be diagnosed or observed by doctors.
Impression of me then: "I've stayed up late for months now, drinking coffee alone, working, and trying to figure out what could possibly be causing these anxiety-like problems. I've checked the symptoms for cancer, AIDS, Lyme disease, and general death repeatedly and nothing quite fits. What...could...be....causing 'attacks' of 'anxiety'....hmmm sips coffee" :)
If you're sleeping well, a normal weight, not intaking alcohol and caffeine, it'll at least rule a few things out.
Vertigo and dizziness are different things, as far as I understand, and I don't have vertigo.
Diabetes is practically eliminated, that was one of the main suspects, we did all kinds of blood tests. My sugar and insulin levels are normal, glycated hemoglobin slightly elevated.
Sorry for the „internet diagnosis“, but I had a lot of the same symptoms in the last three months - maybe it helps: did they check your thyroid thoroughly? Best of luck to you!
Reminds me of the recent recommendation to not use metal barbecue brushes as the bristles can get on the food and lodge in one's throat, leading to debilitating disease and death.
This story reminds me of the dangers of metal grill brushes. Public service announcement, don't use a metal brush to clean your grill. The metal strands can breakoff and if they get lodged in your food and accidentally swallowed it causes serious health issues and surgeons have a very difficult time removing them. These brushes are actually outlawed in Canada but not in the USA.
It seems like a needle piercing the skin between two ribs to a distance of at least 2-3 cm could become lodged in tissue inside and be pulled in completely when the rib cage expands on the next breath. Once the needle is inside the body, anything goes. The heart is only approximately 3-4 cm from the skin. The heart's beating could grab the needle and pull it even farther in.
A web search brings up several instances. This one [1] at least seems to somewhat confirm my intuition.
I feel immensely grateful for being alive at a time when something like this could have been diagnosed (if I may be allowed a pun) in a heartbeat, but at the same time I cannot help but wonder about the ailments that our machines cannot see and our knowledge cannot diagnose yet.
Creepy! It makes me wonder what other ailments people may currently have for which their isn't yet technology to discover. Had they done an Xray of Nellis they surely would have seen the needle, I'd imagine.
> for which their isn't yet technology to discover
Without a doubt there will be a ton of DNA based issues. Right now we know just a tiny number of them, and usually only when the issue is a single change.
At some point we'll have the computing power to detect issues caused by two mutations at once, then 3, and so on.
We would need massive quantities of data: Full genome analysis, and a full medical description in a computer readable format.
So expect a DNA drive at some point in your future: Hopefully anonymized, and even more hopefully optional. (Anonymized is pretty likely - but optional, well, that one we'll see - I suspect at some point you will be required to submit data in order to receive health insurance, so technically optional, but not practically.)
2: Chemically induced issues. (What chemical specifically I obviously can not say.) I suspect we more or less know all the single-chemical issues. But issues caused by chemicals that act synergistically are much less likely to be known.
3: Various parasites and other types of mutualism (Commensalism, Amensalism).
In terms of finding issues caused by multiple mutations, it isn't so much a case of not having enough computing power - instead, it is about having enough patients with the same condition that gives enough statistical power to say for sure that these variants are the cause.
Humans are extremely variable. If I do whole-genome sequencing on a random person, I'll find probably 3 million places in their DNA where they differ from the average Joe. 90% of those are common variants, and we can filter those out because we know they are common, but that still leaves on the order of 300,000 variants that are rare, the vast majority of which cause absolutely nothing.
We already diagnose conditions caused by two mutations - they are called compound heterozygous, because there are two heterozygous mutations, one on each copy of a particular gene, therefore clobbering both copies and causing disease. We have very very few conditions where we know that mutations on multiple genes are required for disease - they are simply too hard to look for, as we don't have enough people in the world to get the statistical power.
We’re having such a drive in the UK, and my wife is working on the project. It’s called 100,000 genomes and aims to sequence the whole genome of 70,000 patients with rare disease or cancer (the other 30,000 genomes are from tumors), and their families. The ethics of consent and the possibility of incidental findings are all being taken into account.
I have been to more than a dozen doctors over the past 4 years and nobody has been able to diagnose what's wrong with me.
I have the following symptoms:
- Constant phlegm in throat and upper airways (This is the most annoying).
- Fatigue
- Low-quality sleep
- Phlegm increases after eating and during exercise and causes me a runny nose
I am in my mid 20s, used to smoke, quit ~5 years ago, I have a deviated septum.
I have been through the following treatments and diagnoses:
- H.Pylori diagnosis – Negative.
- Treatment for GERD – No improvement.
- Treatment for LPR and Chronic Bronchitis – Caused me breathing problems.
- Treatment for anxiety – No improvement.
I feel hopeless of ever living normally again, I can't exercise because phlegm keeps running up my nose and throat, I can't eat outside because I have to use an obscene amount of tissues.
I've seen multiple ENTs, gastroenterologists, and respiratory system physicians. Once I looked closely at "modern" medicine, it seems to me that it's not very modern per se.
One of the gastros (my favorite) was a woman who methodically went step-by-step diagnosing, asking for tests, and giving preventative treatment (when applicable) for everything below the esophagus, she didn't suspect Crohn's at all.
Early on, crohn's was a hypothesis I had but I quickly moved on because there's very little evidence to support it in my case; and a colonoscopy isn't something I'd accept based on very little evidence.
The ENT told me "If you don't get better with the gastroenterologist, we can consider a septoplasty" but he was kinda skeptical that a deviated septum alone would cause this amount of phlegm.
Regarding allergies, the respiratory specialist rejected it. And over the course of these treatments, I self-prescribed Claritin (which didn't do anything), followed by Zyrtec (nothing either) to rule out allergies. Also, this is consistent, not seasonal, and not food-related, the latter which I have controlled for.
I have constant dizziness, borderline fainting (but never faint), weakness/fatigue, lots of gas (burping), ringing in my ears, dry skin, I'm losing weight despite moving very little, slow metabolism probably. I randomly get better when I can walk around for a few hours. I also get bad "attacks" when my mouth gets dry, heart races, I can't get up, and I generally feel like I'm dying, but it passes in ~10 minutes.
I had multiple blood tests, which are nearly perfect, except glycated hemoglobin, which is slightly elevated, but not at the diabetes level. I had gastroscopy, X-rays, and head MRI, two EKGs, echocardiogram, all normal. I'm finishing some heavy antibiotic treatment, which seems to have done nothing.
It's all very frustrating, my symptoms fall under so many diseases/conditions, it's extremely hard to pinpoint even with modern medicine. It can be anything from sleep deprivation, dehydration, panic attacks to more serious things like heart infection, arythmia, tumor, cancer, vestibular apparatus disorder, etc.
Diagnostics is still very very hard.