Posted 10/21/2017 2:33 AM (GMT -6)
This all really started almost two years ago, and it's only gotten so much worse ever since. I have an extremely pressure-like feeling in my head, as well as the kind of dizziness that feels like I'm drunk or in a boat, all of the time. Mostly, the dizziness is a feeling, but sometimes - especially recently - it is accompanied by a visual shaking, which I have noticed is usually in time with my heart beat.
Around when this started, I have also suffered hearing loss and tinnitus. I have been diagnosed with several ear infections since about a year ago, the first one around this time last year, and the most recent about two months ago. I have, however, been to an ear doctor, and he said he could see nothing wrong with my ears. He did a hearing test on me, and I apparently didn't do well - I have hearing loss in my right ear in low frequencies. My ears hurt most of the time, and there is often clear fluid coming out of them, even when I have no ear infection. Mostly the pain is as if a sharp icicle has been jabbed into my ear, and mostly only my right ear, but I also feel bad pressure in both. I often close my hands tightly over them in an attempt to make the pressure stop. It rarely works at all but it's the only thing I can do. Sound often comes through "fuzzy", and my ears do an odd, vibrating/clenching thing in response to sound.
My eyesight has been getting worse. I got glasses about a year ago, and by March this year they were no longer good enough - better than with no glasses, but still not good. It has only gotten even worse since March, I used to only have poor long distance vision only last year - now I have to squint or even put my glasses on just to use my phone.
My blood pressure often goes too high or too low, usually by about 10, so around 150 or 90, give or take. I also have a high heartrate - over 90 resting, up from over 80 resting last year - and it often goes up to and beyond 150 and beats so hard that I can hear it. Sometimes it hurts really bad and feels like it stops for a few seconds. However, I have had both a heart ultrasound and a 24 hour heart monitor and they said there is nothing wrong with my heart. I also have occasional hot flushes and have been in bed red-faced and dripping with sweat even on the coldest winters night.
My symptoms worsen when I am anything but lying down - within less than a minute of even just sitting up a little bit, my heart races and I feel so, so dizzy, with insane head pressure and an almost immediate headache. I often refuse to go to hospital as I know they will make me wait, sitting up in a wheelchair for hours and I cannot handle that. It's so bad that I'd honestly rather die than sit in a wheelchair for hours. Most days I can't even make it to the bathroom without help. I have had "drop attacks" - like passing out but without losing consciousness - several times this year, and whenever I stand up I feel like I am going to faint. Because of this, I am stuck in bed basically 24/7.
I have terrible neck and back pain, to the point that I have hired someone to come to my house to massage me. I also have lung problems that have not yet been diagnosed, my breathing is wheezy most of the time and my lungs hurt. I also have a bad cough, since early 2016. I have been tested for whooping cough and meningococcal and I don't have them. I also had a chest X-ray that came up with nothing abnormal. My nose also hurts quite often, with the same cold pain I get in my ears.
I have been to a neurologist as well as the cardiologist and ear doctor. I have stayed in hospital for over a week getting tests - the heart ultrasound, 24 hour heart moniter, and two MRIs - one for the brain and one for the ears. I also had another MRI last year - nothing showed up.
I have been to so many doctors, but nobody has any clue what this could be - if they even try to find out at all. I unfortunately was diagnosed with anxiety over a decade ago, and because of this, and that nothing else has been found, most doctors are convinced this is only anxiety. It is not. I know my own body - I've only lived in it for more than half a century - and I know something isn't right. I can tell the difference between an anxiety attack and whatever this is, and besides, I have taken a Valium when I have felt bad and it has done nothing but make me not care what's happening. I can still feel the symptoms. My most recent hospital trip was very unfortunate, the doctor immediately stopped taking notes as soon as I mentioned I was on anxiety medication, and when I refused to agree that this is only anxiety, he actually looked like he was going to physically lash out at me. His last words to me before I was wheeled out of the room to go home (where I violently threw up from a migraine) were that I had to accept this was anxiety. He had me speak to a psych doctor while I was there, and as we spoke she seemed to believe there was something physical, telling me I need to get a regular psych team organised because only then would doctors like him would have to listen to the physical symptoms. But when the doctor came back he said the psych doctor agreed this was just anxiety - I don't know if he was lying or if he'd convinced her it was just anxiety or if she was lying when she said she agreed with me, but I felt so utterly betrayed. Since then I haven't dared to go back to the hospital, not even when Health Direct (on-the-phone health advice) said they wanted to call an ambulance for me when my heartrate was over 150. I begged them not to as I could not sit up in a wheelchair for hours and get even sicker, only to have to go through that humilation and being condescended to like that doctor did.
I have had several suggestions as to what this could be. The two that seem most likely, to me, are Intracranial Hypertension and Spontaneous Cerebrospinal Fluid Leak... however, it has been an uphill battle to try to get tested for these, I first found out about them several months ago and have suggested it to several different doctors and have come no closer to getting tested. I suggested a CSF leak to the horrid doctor at the hospital and he insisted that it cannot happen without a serious trauma, like a car accident.
I will be seeing another neurologist on the upcoming Friday, but I have no faith in getting any results. I don't know what kind of a person this neurologist will be - if he will listen to me and get the tests I want, or if he will immediately give up on me the second he finds out I have anxiety.
I have absolutely no quality of life at all. I haven't seen any of my friends in years, most days I can't even sit up to watch tv, or even use my phone to watch YouTube as the head pressure, headaches, dizziness and eye pain become unbearable. It has taken me several days to write this post in my memos app as I cannot stand being on my phone for long. My laptop has been used less than ten times in all of 2017 as I feel terrible using it, and I have seen only four movies at home this whole year - I am counting a Titanic documentary as a movie due to it's length. I can't even just listen to music or podcasts because of my headaches, earaches, and the fuzziness and vibrating/clenching. All I can do is lay there in the dark with my eyes closed, clutching my head and wishing I could finally die and escape this. I find myself thinking "I don't want to be alive any more" at least once a day. I have so much wasted potential, all I want is to do my part to help the world by offering the skills I have, but now I can barely even text my friends. My best friends have had weddings I have been unable to attend, and had children I have not met yet. I have had no love life since this started, I have never been so lonely for so long. I need my life back! I am not even thirty yet, too young to have my life stopped like this.
Please, if you have any suggestions or advice, let me know. I live on the Central Coast of New South Wales, Australia - if anyone knows of anyone around there that will take my case seriously and will try to help, please please tell me! I am willing to travel to Sydney if needed. Recently I found out about an Undiagnosed Diseases Program in Western Australia, and briefly allowed myself to have a bit of hope that they would take me in and help me, however after many goose-chase phone calls and unanswered emails, I found out this program is only for young children who are in the Western Australian health system. I was willing to travel that far just for the possibility that they can help me. This is obviously a difficult case and it's not going to be solved with a blood test or an MRI, but nobody is willing to look hard enough, or even look past my anxiety! I just don't know what to do. Every day is an unbearable hell and it's only getting worse and worse. Please help...