Posted , 9 users are following.
Apologies if this is a little all-over-the-place, I had to write this over the course of a few days as using my phone for too long makes me feel extremely sick. It's also going to be quite long too, I'm sorry... tried to cut it down as best as I could - there's also a summary at the end if that's easier to follow!
Starting a little more than a year and a half ago, in December 2015, I've been getting very intense dizzy spells, head pressure, nose pain, earaches and hearing loss, along with several other symptoms, that leave me curled up in the fetal position clutching my head and crying a majority of the time. The dizzy spells feel more like I'm in a boat in the middle of a storm, and come along with strange, sudden "falling" sensations. The head pressure is a little more difficult to describe, the best I can do is that it feels like there's a metal thing wrapped as tightly as possible around my head, along with a feeling like my head is filled with water and weights, and pain all around the back of my head that feels like I've been bashed by bricks over and over - it feels bruised and hurts to touch. The pain in my nose is something between being punched from the outside and stung on the inside. The earaches are a stabbing sort of feeling, and come with occasional clear fluid coming out. The hearing loss is worse in my right ear, and I have tinitus, which is worse in my left ear.
A little less than a month after this started, in January 2016, I got Doctor On Call to come to my house as I was afraid to leave my house in case I would faint. He looked into my ears and said that there was fluid that was most likely causing the dizziness. He prescribed me with Stemetil and said that should help with the dizziness, but it didn't. And it still doesn't.
A while later, I got Doctor On Call to come over again. A different guy came this time, he checked me over and said everything was fine - including my ears, no fluid - and left abruptly, saying I need to go out and see a GP.
In about August, I finally left my house for the first time that year to see a new GP. I had a very hard time sitting up in a chair and had to lay down after a short while. She was a very good doctor - she did the usual checks, finding no ear fluid, doing my blood pressure etc. Then, she did my blood pressure again, sitting down first and then again standing - finding that my blood pressure went from normal, to very low, very suddenly. She said this might have something to do with it, and then when I mentioned my eyesight had gotten very poor over the past five years or so, she said that could also have something to do with it, recommending I get glasses. She also did a vertigo test - sit up, then fall into a laying position and quickly turn my head, then sitting up looking in that direction, then look the other way and repeat. I did not experience any trouble with this test.
I got my eyes tested and got glasses in October, however they do not relieve my dizziness at all, and only make my head and nose pain much much worse, so I rarely wear them even though my eyesight is really bad.
This new GP promised to find out what was wrong with me and seemed very dedicated to my case, however, shortly after my second appointment when she referred me for an MRI appointment, she was unfortunately deported from the country. I am now seeing two doctors - the GP who replaced her, and a new doctor who specialises in women's health.
The MRI I got in October came back showing absolutely nothing wrong with my brain. A couple weeks later I had Doctor On Call come over on a particularly bad weekend. He checked my ears and diagnosed me with an ear infection in the right ear, and prescribed antibiotics. This first ear infection cleared up within a week.
I saw a Neurologist in February this year after my GP taking several visits before he would refer me. I had a very bad day that day, needing to walk a few hundred metres from the parking lot to his office, longer than I'd walked since the whole thing started in December 2015. By the time I got to his office with assistance from family, I was very pale and sweating, on the verge of passing out. The doctor only spoke to me for a few minutes before deciding I would be admitted into hospital. I stayed at hospital for a little over a week - I had two more MRIs done, another brain one and one for the ears, as well as a heart scan and a 24 hour heart moniter. All four tests showed nothing wrong. I was also taken on short walks around the hospital to get my strength up as I had been almost completely bedridden and housebound for a year aside from appointments. And that was all that was done, before I was signed out and went back home.
About a week after I went home, I had a very bad day and had to get Doctor On Call in again. He checked my ears and diagnosed me with ear infections in both ears - while I was in hospital I had my ears checked several times and they were totally fine then, not even fluid. I was given antibiotics, however a few weeks later when I went to see the women's health doctor for the first time, she checked my ears and informed me that I still had the ear infections (these would take an extra three rounds of antibiotics to clear up). She also checked my blood pressure and heartrate and told me they were high. I told her that was "normal" for me and I'd had my heart checked and she said that's not normal and needs to be investigated further. I also told her I had a barking cough since not long after the dizziness started and showed her a recording of one of my coughing fits and she referred me to get a chest X-ray the next day. However, I was far too sick to get out of bed the next day and wasn't able to get it done until the end of the week, by that time the women's health doctor had gone on a lengthy holiday.
I did, however, get my results during a visit to the emergency room in June - I had collapsed in the bathroom at 4am and was taken in an ambulance. You guessed it - nothing wrong with the X-ray. Just recently she recommended I get a throat swab to check for whooping cough, which I got last week and will get the results when I see her on Tuesday. I do not think I have whooping cough, for one I have had the injection and for two nobody around me has caught it from me and it is highly contagious. But I do appreciate her being thorough and making suggestions, which is more than I can say for some of the people I have seen.
I had an appointment to see an ENT specialist a few weeks ago. He blew something in my ear and checked them, saying they were perfectly fine - no infections, no fluid, nothing. Then I had a hearing test done, which he says I didn't do well on at all. He then put a camera up my nose and down my throat, saying they were fine too, no sinus infection like one of the Doctors On Call diagnosed me with. He did, however, mention a "slight bend" in my right nostril, though he sort of seemed brushed it off as unimportant, so I don't know what to make of that... He said there wasn't much else to check from there, saying I have had pretty much all the tests done. He referred me for a CT scan of my sinus, but said pretty much every other test has been done for me and he doesn't think there's really anything else that can be done.
I don't know what else to do from here. I still have the CT scan, and a 24 hour blood pressure moniter - but nobody seems to know where to go from there. Like I said, I will also be getting the results of the throat swab on Tuesday, but I'm 99 percent sure I do not have whooping cough, and even if I did it does not explain the pain and dizziness. Please, please, if anyone has any suggestions, what it could be or what other tests I could ask about, please tell me.
Most days I can't even sit up and watch a half hour of television without winding up curled in the fetal position clutching my head - I have seen three movies today, not even movies at the cinema, I'm talking movies on TV and Netflix. Those three movies were watched with multiple long breaks, one took a whole week to fully watch! I have cut down the amount of TV shows I currently watch from almost twenty in 2015 to exactly two now - new season of Doctor Who, and repeats ofMalcolm In The Middle, and I am behind on those, seventeen episodes behind on Malcolm and five episodes behind on Doctor Who. I am at a standstill in my life, unable to go out and attend school, meet people, have a family and a job - I'm bilingual and I have a lot of other skills to offer the world and I dream of using them to open the English speaking world to many non-English films and series they probably haven't even heard of. Yet I can't even sit up to use my own laptop! I am losing touch with most of my friends except for my four closest, as I am unable to hang out - I have not seen any of my friends, not even those four closest, since before this whole thing started in December 2015. Of those four, one has married and I couldn't attend the wedding, and two have children I have not been able to meet. I truly am at the end of my rope, I cannot live like this any more.
- Dizziness, feels like I'm extremely drunk or in a violently rocking boat. Comes with sudden "falling" sensations.
- Head pressure, feels like a metal rod twisted around my head, feels like head is filled with water and waits and about to burst like an overloaded water balloon.
- Head pain, feels like I've been bashed over the head with a bag of bricks over and over again. It hurts to touch and feels like I have been bruised, however there is no visible bruising.
- Nose pain, feels like I have been punched directly in the nose, also feels like I have been stung from the inside.
- Earaches, feels like somebody keeps jabbing a cold, sharp metal stick in my ear. Clear fluid occasionally comes out.
- Hearing loss and tinitus.
- Barking cough, wheezing. I occasionally cough up blood, not a lot but enough to worry even though I have been told the blood is most likely because of the coughing.
- High and low blood pressure. I forgot to mention that the sitting-and-standing test hasn't shown blood pressure drops since the first time it was tried. Also, blood pressure problems are inconsistent with symptoms, I can be feeling awful with perfect blood pressure and feeling relatively okay with a bad blood pressure reading.
- Poor eyesight. It is rapidly getting worse, I got my glasses in October last year and they are now no longer good enough. Wearing glasses does not help dizziness, and it makes my nose and head hurt a lot.
- Extremely sore eyes.
- "Drop attacks", a new symptom that started in June, where I am standing one second and on the floor the next. I do not think I go unconscious when this happens, and it has only happened three times, but it is extremely concerning.
- Exhaustion, I have to take naps most days.
- Muscle and joint pain, particularly in the legs and back, almost certainly due to being bedridden and curled up and tense in the fetal position so much. (Probably not helpful as the cause is pretty clear but wanted to give every detail just in case.)
- Nausea and stomach pain - had for a very long time, diagnosed as IBS and Cyclic Vomiting Syndrome. I mostly have a handle on these illnesses with medication and diet. (As above, probably not relevant as it is something I have had since childhood and I know what it is and how to treat it but added just in case.)
Tests done, came back with nothing:
- MRIs, two on the brain and one on the ears.
- Heart scan
- 24 hour heart moniter.
- Chest X-ray.
Tests yet to be done:
- CT scan of sinus.
- 24 hour blood pressure moniter.
- Results to whooping cough throat swab.
(I have been told there are no further steps that can be taken other than the above. Would appreciate any suggestions for tests I can have done so I can suggest them to my doctor on Tuesday.)
- Occasional "ear fluid".
- Two ear infections, one that took four rounds of antibiotics to get rid of.
- Occasional low or high blood pressure.
- Hearing loss, with no reason for it. Need hearing aids but I do not like the way they feel.
- Poor eyesight with need of glasses, gotten much worse since October last year.
- "Slight bend" in my left nostril, brushed off as unimportant and not the reason why I feel so bad.
0 likes, 14 replies