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.

Thanks! I won't give up while I can still move and talk :)

Glad your wife figured it out.

Thanks.

It's totally cliché, but i was very happy to be there for her.

What was she diagnosed with?

Endometriosis

Ouch. That's one of the most painful and hard to diagnose disorders, I remember watching an educational video on it.

Indeed it is. Almost 50% of the women have it, but most of them don't even know it. It varies from painless to enormous pain.

My wife described the recurring pain as stomach full of slow moving very sharp knives.

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"!

We had similar experiences with some doctors.

We've had specialists telling us they flatly did not believe in Endometriosis. Fun times.

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.

> and it never harms anyone anyway.

the risk of harm is low, but some people experience increased distress after mindfulness.

https://www.theguardian.com/lifeandstyle/2016/jan/23/is-mind...

I was also going to reply there same. Meditation/Pranayam is far better than plain old pray to God.

There is definately some thing to gain and nothing to lose.

Thanks. I don't know why you're getting downvoted so much. Meditation definitely won't hurt, I've been wanting to try it.

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):

https://www.psychologytoday.com/blog/feeling-it/201309/20-sc...

Most of the research has serious flaws.

http://www.newsweek.com/mindfulness-meaningless-word-shoddy-...

https://www.scientificamerican.com/article/wheres-the-proof-...

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.

If you are looking for recommendations, I am finding the OAk app to be very useful.

Did you have your spine (esp cervical) examined, for the possibility of Vagus nerve compression?

No. But my PCP's theory is that the excess gas triggers the vagus nerve. Thanks for the idea, though. One more thing to eliminate by testing.

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.

And/or book an appointment with a (highly rated) physiotherapist/manual therapist for neck/vagus nerve treatment. It might just do the trick.

Thanks for the ideas!

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!

Yeah, my attacks are very random too, I got one during sleep even.

That prevents me from doing some regular things like driving, which is extremely inconvenient for my family.

You probably got told smoking is bad a billion times, but please, try and quit it.

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.

I was just reading about ME, which seems to fit your symptoms. IANAD and all that, but worth checking for if it hasn't already been ruled out.

hi. see my above comment re. toxic mold exposure.

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.

Actually we we're going to schedule the Epley maneuver, it was recommended to be done in a hospital setting in case there are blood pressure issues.

So there's a chance your diagnosis is spot on.

Please let me know if it worked!

Hi. Please look into toxic mold exposure.

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.

Interesting idea, will check

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.

Is the hormone decretin or gherlin or limostatin?

I believe I was thinking of GLP-1 https://www.ncbi.nlm.nih.gov/m/pubmed/29113813/

You can easily test your blood sugar, like diabetics do. I did this out of curiosity, and it was interesting to see it rise and fall after eating.

> panic attacks to more serious things

Anxiety disorders are in the top ten when we look at years lost to disability.

Many people (70%) who report attempting suicide have an anxiety disorder.

Psychiatric illnesses are severe illnesses.

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.

Just a suggestion.

Sorry homeopathy is complete nonsense from my perspective, so I don't think I will even get a placebo effect. Thanks for your opinion though!

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 doesn't fit the symptoms very well, though not completely out of the question.

Lactose intolerance is a possibility too, it's on our long list of the things to eliminate. I'm going to quit milk based products today.

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."

Dizziness. Is that 'room spinning' or 'funny feeling in the head'?

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.

Consider celiac, it covers basically everything you've described.

POTS?

Stress?

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.

Agreed. Many people overdo it when it comes to supplementation, or eating too much of some hype crazed antioxidant food.

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! :)

Random Internet Guess: Heavy metal poisoning?

Thought of that too, but I don't have the main symptoms like vomiting, diarrhea, abdominal pain. I'm not a doctor though, so who knows.

Which medical school did you attend?

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.

" dizziness, borderline fainting (but never faint),"

Vertigo? Diabetes? What are your sugar levels? Can you get ahold of anti-antibiotics that would cross out 1/2 of all possible diseases.

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.

Mono? https://www.healthline.com/health/mononucleosis

No fever, no headaches, no joint/muscle pains, no swollen lymph nodes. So probably not.

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!

Don't be sorry, most of the ideas here match what we have explored or were about to explore.