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

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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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  • Posted

    I might not be able to check this thread for a while, I get so sick sometimes that I can't even check my phone for days, which has caused some friends and family to give up on me as they are frustrated and offended with my delay in responding to them. Mainly due to a combination of headache, difficulty breathing, dizziness, and the eye burning sensation.

    I just want to be able to watch my shows and movies and play video games when I want to - but even that is too much even when I have less pain and I can keep my eyes open. Particularly, action scenes can send me into terrible dizzy spells that take hours to recover from, and I haven't played any video games that have more than a little movement in over a year... Games like Mario Kart are the worst, instantly affecting me, I can't even watch someone else play games like that.

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  • Posted

    Things have taken a turn for the worse, very quickly. Last Thursday I fainted and was taken to hospital by ambulance. I was sat up in a wheelchair for between 20 to 30 mins, and felt very unwell by the time I sat back down, with a migraine that took days to get rid of. The pressure in my nose, head, and eyes has been unbearable since then.

    Yesterday I had the worst dizzy spell I've ever had in my life, followed by several more of the same severity since then. I have a temperature and am very sweaty.

    I started on blood pressure and heart tablets on Thursday afternoon, and my family think this is why I feel so bad but they forget I fainted and got a migraine from sitting up, hours before I was even prescribed these tablets.

    Last night, when trying to sleep, my tongue stuck to the roof of my mouth and I couldn't breathe through my nose, at the same time. I couldn't breathe and this totally woke me up. I got almost no sleep last night despite taking strong sleeping tablets.

    The pressure in my nose, ears, and head today is insane. I can barely keep my eyes open just to write this. They are swollen, and the swelling from my nose is pressing against them, and light hurts really bad. I'm sweating so bad I have to keep wiping my phone every minute or so. Yesterday I was prescribed steroid nose spray from my doctor after begging for it, and have been extremely disappointed to find out it doesn't work for me. It might clear my nose for like a minute, but it doesn't stop the pressure, and it burns a little.

    My nose has been bleeding A LOT since yesterday, and the first thing I did this morning was spit up (or down, rather, as the doctor said) blood.

    I am not in a good way. I cannot go to the emergency room, as in my country (or at least my area) I have been scolded for doing so, even after going there when I fainted. I am considering committing myself to a psych ward as I am having bad panic attacks and honestly questioning if this is real or if I am in a torture simulation. I fear there is only one way out of this, and that is to end my life before I feel worse.

    If there are any Australian doctors reading this who will be willing to take me in as soon as possible, who like a challenge such as that which my situation is... or if you know one who will do so, PLEASE help. I don't think I can handle this much longer, and this is all having a terrible affect on my family too. They are no longer well mentally due to what they are seeing happening to me. Yesterday my nan broke down and told me she could "smell the infection" on me. I don't know what that means or how it smells as I can no longer smell anything. My hearing and eyesight are also getting worse, very quickly.

    Please help. If you can take me in, even for a study or trials or anything... Please help. If you have any suggestions too, please...

    I want to ask, has anyone else tried steroid nose sprays with ETD and they have not helped? At least that would help reassure me that I don't have anything worse, if somebody else has tried the same thing.

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    • Posted

      Hello Brittabee

      I see that no one has replied to you in your great distress. I am sorry that I cannot help you either but I suffer from Sjogren's Syndrome (dryness everywhere including eyes, nose, mouth, throat as moisture producing glands are destroyed), patulous Eustachian Tube (stuck in open position) which adds to the misery (can't sing, sound to myself like I have my head in a bucket when I talk etc. etc.), numerous digestive problems, scoliosis (curved, twisted back) and other back issues... The list goes on. So why I am writing is to say I know what it feels like to have multiple things wrong, to be in pain and severe discomfort and I know how miserable it can make you feel and how you can dread the new day but I am much older than you and it must be so much more terrifying when you are young Thus you have my great sympathy. I also live in Australia (Melbourne) and though I can see a lot of specialists they can do virtually nothing to help me. It is a while since you wrote and I do hope you have found some answers and are feeling better. It is Christmas. I hope you can find some joy and some hope in the season and may 2019 be a better year for you.

      Go gently into the new year.

      Maureen

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