Recently dx w/ ETD, looking into POTS and lupus, but unsure... v. distressed, getting worse quickly

I've been dealing with a lot of very distressing symptoms for almost three years now. Mainly, and most severely, a strange and unbearable head pressure (next to my eyes, above the ears, painful to touch) and a disgusting and uncomfortable feeling of my nose, ears, brain and tongue being sucked very harshly back down into my throat. And an intense dizziness that feels like I'm in a small boat during a thunderstorm, or like I'm forever falling down a bottomless pit.

I have a lot of pain in my nose (an icy sort of sting), particularly on the left side, which the nostril is slightly smaller than the left, and every day it swells up just to the side and underneath my eye, for at least a few hours. However, I have been diagnosed with a deviated septum, with the bend being in the less painful right side. Recently, a few weeks ago probably less, I was diagnosed with Eustachian Tube Dysfunction, and a sinus infection with bleeding on my right side. Again, this is the LESS painful side. I just don't know if this is the right answer, and I don't know what to do about it. I don't know if my doctor was right, he just looked up my nose with a flashlight and a magnifier and saw the infection and bleeding and came to that conclusion. The antibiotics and cream he gave me haven't helped at all. Nor do any ETD home remedies or things like chewing gum or yawning. I feel worse today than I did before the diagnosis. I don't know what to do, I have offered all sorts of solutions to ETD but doctors say they won't do it, and I have been told that probably isn't even the right diagnosis. I don't know any more, the day I got diagnosed I felt so relieved, now I'm just lost again.

I also have redness in my throat, and it hurts like icy dryness to breathe through my mouth, which makes for a very distressing situation when my nose blocks up and I can't breathe through it. The back of my throat also closes up and my tongue feels painfully suctioned to the roof of my mouth at the back. Also, sometimes it hurts to touch my throat and under my chin, but I have been told my glands are okay, just a bit "palpable".

I have had nosebleeds several times a day for over a month, it started out only occasionally, then once a week, then almost daily. I also spit up blood, but I have had my lungs checked and the conclusion the doctor gave was that the blood is most likely coming DOWN into my mouth, rather than up.

I began to lose my hearing a few years ago, which came with tinnitus. Both have gotten progressively worse. It started out with worse hearing in the right ear and worse tinnitus in my left, but now it's pretty much equally bad on both sides, I can only notice slightly louder tinnitus in my left ear. My ears hurt and feel plugged up, as well as an icy pain similar to the nose pain.

My eyesight is also getting progressively much worse, as of recently my glasses make an almost unnoticeable difference, I have to check several times to see there is a tiny difference. My last eye check was about two years ago, but surely it's not normal for them to be THIS bad... My eyes are also very painful and watery, and I see white lines and spots, with occasional white "thunder" that lasts a second. Sometimes I cannot even keep them open for more than a second because they feel like they're burning! Oh, also I recently found out that I got diagnosed with "vertical micro saccades" over a year ago, but I can't figure out what that means, if anything. Most likely not, because my doctor was so unconcerned he didn't even tell me, I read it from an old recommendation letter that I had lost.

It is agonising to breathe, and has been getting worse for over two months, and quickly even worse over the past week. It feels like my lungs have shriveled up and filled up with ice. However, my lung x-rays and scans have come back clear. I wheeze a lot, especially recently, except 90% of the time when doctors are listening to my lungs, which is just my luck!!! They make me feel like an absolute fool and even accuse me of making it up but I'm not the only one who hears it at home. I also have a harsh, painful, "barking" cough.

I get tachycardia, which is almost always accompanied by difficulty breathing through my nose due to blockage. It goes up to 200bpm, and it gets worse if I sit up or stand up. I also have slightly high or slightly low blood pressure, mostly low, especially when standing. I just recently had a scan, the doctor said I was experiencing "sinus tachycardia" at the time. I have tried to look that up but I have difficulty processing these days and I still don't understand what it means, but it looks like it's not a sinus issue despite it's name... I don't know, I can't understand anything any more, I used to be intelligent but now I can't think. I experience a very uncomfortable and distressing feeling of my heart "fluttering" and like it's flipping over but have been told the only problem with my heart is that it's beating hard and fast and they can't figure out why. I am currently seeing a new cardiologist who believes what I have is most likely Postural Orthostatic Tachycardia Syndrome... but I can't help but get the feeling my head, heart and lung problems might not be separate illnesses. I don't think it's that simple. I do occasionally pass out or have "drop attacks" (without passing out), if I stand up, but rarely immediately - somebody told me that with POTS, the passing out is pretty much immediate, but for me it can take a minute or more. Sometimes I will get up to go to the bathroom and pass out halfway back to my bed.

I had a slight stutter as a child, but as recently it's come back, far worse than it was back then. I can barely get a sentence out half of the time, "t t t t t t t t tal tal tal sp sp spea sp t tal tal talking li li li li li like this" and I can tell people are getting frustrated with me, they keep trying to finish my sentences and that just throws me off even more and worsens my anxiety. I don't know why this is happening, I didn't even have anywhere near this much trouble as a child. I've been told it's likely an emotional thing due to the anxiety from being so sick, but I worry that something is wrong with my brain. I used to be intelligent, now I can barely think most days, let alone study like I used to. I'm worried I'll just get less and less intelligent and more behind, and my stutter will get so bad I won't be able to say anything.

Recent blood tests have shown that I have a low white blood cell count and low iron. The iron is very slowly coming back up with an iron powder drink, but I haven't had any improvement in the way I feel, the opposite in fact, I feel worse/weaker. The white blood cells are not coming back up, but they are apparently not accompanied by any results that hint at any sort of cancer or anything similarly bad. I was told it's most likely because my body has been fighting infections, which I get a lot particularly in the ear.

My new neurologist thinks it sounds like I have lupus, but I disagree... I think it's gotta be more complicated than that. But my mum and nan are completely convinced this is what I have... they're far too optimistic that we've finally found the answer but I just don't think it's that simple. But they keep focusing on the symptoms I have that fit with lupus, while ignoring the things that don't.

I am also having what feels like fevers, but only occasionally come up with fever temperatures when checked. But it feels like my body is burning, particularly my face, which is red under the eyes and on the cheeks, or red and burning all over my nose. I also get drenched with sweat, but still it rarely is a real fever. Currently I have a red patch on the right side of my head, which is very hot and pressured - this is the first day I have had a patch there, like that, and it is extremely painful.

I do not know what to do. I am in agony with the pressure and dizziness. I read that cortisone injections can help, but I asked my doctor and he said he can't put an injection so close to my brain. I have an upcoming nerve test, cardiologist appointment, and neurologist appointment but everything is happening so slowly. Nobody seems to understand that I can't do this any more. I am to the point where I am self harming during anxiety attacks, and every morning when I wake up properly (after difficulty breathing all through the night, I keep waking up gasping for breath), I have an anxiety attack thinking of how much I don't want to go through another day of this. I don't want to be alive any more. I need to find a way out of this but I don't know what to ask for... I can't keep waiting for specialist appointments, I am getting worse too quickly and am extremely depressed, to the point that I have considered ending my life rather than starting the next year like this. I need a hint as to what I can do, at least just for the dizziness and the pressure. Nothing works... I've tried everything, from strong (codeine) painkillers, to marijuana (hurt my lungs too much and made dizziness and anxiety worse), I even tried getting drunk earlier this year, in a desperate attempt to try and see if SOMETHING would work. But obviously that was an extremely idiotic idea and I just ended up feeling sicker, and I felt so ashamed and foolish.

I should add here, that I am from Australia, and am several hours from the city. Due to my orthostatic intolerance I cannot even handle a trip to the city, let alone a flight overseas, even if I could afford it...

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