From my diary
26th Oct 2012 I'm exhausted it took me hours to fall asleep again I feel as if an elephant is sitting on top of the left side of my head, the noise is still here and I have a pressure within my ear and neck, I feel as if something is pushing from deep inside my head into my ear drum. I feel ill and want to lie down all the time.
30th Oct 2012 still struggling on, its strange I don't think I have an earache or infection as the pain and pressure is deep within the ear almost if you can imagine taking my ear off and the pressure is below the ear lobe deep within my neck. The headache is moving around sometimes at the side of the skull diagonally above the ear towards the back of the skull and sometimes on top of my head. I have a doctor appointment on 19th Nov. Its a nightmare to try and get an appointment with the same doctor.
19th Nov 2012 GP Appointment with Dr Sharma I explained to the doctor what has developed, I explain this horrible woosh noise in my head that I hear on the left side and that it started around the end of October but it seems to be getting worse the more I try and do, I went on to say I have this terrible headache, ear pressure and strange neck pressure. I mention I painted my ceiling a few days before all this started and think its some how connected. Dr S checked both ears and gave a prescription for Otomize ear spray "to clear up what ever is there" Diagnosis possible Ear Infection
25th Nov 2012 I'm really struggling the ear spray doesn't seem to be doing anything and the headache at times feels as if its travelling to the side of my eye socket I think its called the temple area and this woosh/swoosh noise actually reminds me of the times I had pre natal scans the woosh woosh woosh noise I am experiencing is very similar to a baby's heartbeat on an ultrasound.
28th Nov 2012 woke up with lots of pain and pressure like a constant ache deep in my ear. I don't know if the pain is deep inside my ear or within my head, its so difficult to explain. It feels like something is forcing on my ear drum. I'm thinking is it the headaches causing the ear and neck pain/pressure? or the ear/neck pain & pressure causing the headache?
30th Nov 2012 Emergency GP Appointment with Dr Kennedy had an emergency appointment with another doctor this morning. I went through the full story of what I was experiencing and how it all started while sitting watching tv one evening and that the noise I was hearing constantly sounded very like a baby's ultrasound. I explain the headache started the following day after the noise. I mention that I had painted my ceiling a few days previous to the symptoms starting but that my neck pain does not feel muscular, the doctor believes this is a coincidence. Dr K agrees with the previous doctor and looks at my notes from the 19th November and decides "it was probably an ear infection" Both my ears were checked and Dr K said they were clear, maybe one slightly red, I was given Amoxicillin and had to take 1500mg a day for 5 days and I was assured if there was an infection the antibiotics would clear it once and for all. Dr K asked how I was feeling and I had to be honest, I explained I felt awful like I had been hit by a bus and was feeling unbalanced with no energy and wasn't sleeping well since this all started, I also mentioned I had very little headaches over my life maybe one or two but I'd never had one for weeks. Dr K said hopefully the antibiotic would start working and wished me well. Diagnosis possible Ear Infection
2nd Dec 2012 woke with terrible pressure in my head, ear and neck with the woosh noise and electrical noise, feel as if my head is going to explode, maybe the antibiotics are working.
4th Dec 2012 still the same, oddly I keep getting a vibrating feeling deep in my ear and the bone behind my ear, its not on the bone its deeper inside than that. Its gone 11.15pm I'm lying in bed with the headache at its peak and feel the pressure in my neck building, it is also sore around the temple area.
5th Dec 2012 Today is a new day I get up and try to get on with some housework but end up sitting down feeling exhausted, I need to put music on so I can distract myself from the pain and this dreadful wooshing noise. I feel really unwell, maybe I have flu or something? I have never had flu before but if this is the start then I have empathy with others who have experienced it because this is hell.
10th Dec 2012 Hospital Accident & Emergency I tried unsuccessfully to get a doctor appointment from the 6th Dec so I called a taxi and went to A&E, things seem to be getting worse rather than better. It was a complete waste of time, the nurse decided it was really a GP problem even when I said I was there as a last resort because I couldn't get a GP appointment. I went through my symptoms of the wooshing in my head, the headache, ear pain and pressure and more recently the horrible pain and pressure in my neck. The nurse stated I would need to wait around 4 hours to be seen which I said I'd need to wait due to the pain I was in. After I had explained all my symptoms to her and my blood pressure was taken, I mentioned again that I couldn't wait another day to see a GP and because I had suffered the headache for so long which was becoming more intense that I thought I would be better off at A&E. I was repeating myself but I felt so ill and when I mentioned I thought it was related to painting my ceiling, she made a face. I went on to say my GP's had prescribed antibiotics in case of ear infection but there was nothing visible of actually having an ear infection. The nurse then said " if you are saying you have headaches then I can't send you home and you will be seen within 4 hours" At this point I wanted to go home I felt I wasn't being listened to and I wasn't happy with the attitude that my symptoms were "really a GP issue". I'd explained I'd come to A&E as a last resort, I felt ill. An hour later I was seen by two A&E doctors. I tried to explain to the first doctor that I couldn't get a GP appointment and I was suffering drastically and I apologised and expalined again that hopsital was my last resort to try and get relief. I explained all my symptoms in as much detail as I could without sounding like a complete idiot, I certainly felt like one. I also mentioned just in case that it was related that I had carried out painting of my ceiling before all of the symptoms started. I explained the sound I was hearing was very like a baby ultrasound, the headache started the following day along with ear pain and pressure and now more recently I was having deep pain and pressure in my neck. I showed the doctor that when I moved my head side to side I had a horrible sensation coming from the base of my head travelling up the back of my head, he asked if I had been sick which I replied no I hadn't. I explained that I had been treated for a possible ear infection but there was no evidence of an infection it was more of a precaution that Dr Kennedy had given me the antibiotic.
The A&E doctor then started to examine me and said I had the cleanest ears he had ever seen and there was no infection, he did mention he thought there might of been a previous slight ear perforation that had healed, he said he would check my eyes (this never happened) he felt my neck, then he asked if he could speak with a colleague whom he brought back with him. The second doctor was rude and asked why I was at A&E when its a GP problem? at this point I nearly burst out crying, my eyes filled and I felt so stupid but just managed to hold it together. He looked at both ears and said the same as the other doctor, clean ears and a healed perforation. They decided I had a muscular injury in my neck due to painting, I didn't agree and mentioned that I knew what muscle pain felt like and this was no muscle pain in my neck, I explained my neck was not sore to touch but it did have a deep pressure that I found hard to describe, it was more at the base of my skull but deeper and I felt something was pushing from the inside out. I said again its not my neck, I am more concerned about the headache, ear pressure and the constant baby ultrasound noise in my head, I feel there is something wrong in my head. The second doctor looked at me and repeated that it was a GP problem and to visit my own doctor. I was sent on my way with my tail between my legs. I phoned Mr Wanderer and burst into tears, wailing that no one beleives there is anything wrong with me. He calmed me down and told me I had to go back to the doctor and make it clear there is something wrong. I think Mr Wanderer believes I'm loosing my mind. Diagnosis Muscle Strain from overhead painting
11th Dec 2012 GP Appointment with Dr Sharma I managed to get an appointment this morning, Dr S now thinks I have a viral infection that is taking a toll on my body and could take a while to go. Dr S decided as I had antibiotics in the past that they could cause tinnitus and nothing could be done for tinnitus, I reminded him it was a baby ultrasound noise and I thought tinnitus was a ringing sound, I said I do have a lower pitch electrical noise but the main noise was the baby ultrasound noise. He said wait to see how we go. He decided to give me a prescription for Diclofenac and Paracetemol to use for the pain I was experiencing. The doctor went on to appologise for the way the new appointment system is being worked and told me if I needed an appointment I was to tell the reception to give me one, I was also offered a phone appointment where the doctor can call me instead of visiting him. Diagnosis Viral Infection
19th Dec 2012 GP Telephone Appointment with Dr Sharma I called the doctor for a telephone appointment as was previously suggested because I feel no better, the dicolfenac I feel is making me worse. The doctor called me back within a few hours. Apparently he now believes I have something called chronic headache, I was asked what I felt and what next steps I'd like to take!!! Was I hearing correctly? The doctor asking me what to do!!! I said I didn't agree that I had chronic headache and I explained that I felt something was terribly wrong. I also said I had started googling my symptoms and the only thing that I could find that had similar symptoms to mine was a Sphenoid Sinus infection going by the ear and neck pressure. Dr S agreed and wrote a prescription for a nasal steroid spray. Diagnosis Chronic Headache, my suggestion sinus related
24th Dec 2012 nothings changed, I am using the nasal spray but its doing nothing I'm miserable and its Christmas time.
25th Dec 2012 Home from Christmas Dinner, lovely meal with the family and I managed two glasses of wine but the headache and ear/neck pressure accompanied by the woosh and electrical noise was too much for me, I feel as if I'm on a slow rollercoaster and I can't get off, I feel whatever this is causing these symptoms is going to kill me. I have this sickly feeling that something is wrong. I have this image of Mr Wanderer waking up beside me and I'm gone and all I picture is Mr Wanderer and my little wanderers at my funeral.
8th Jan 2013 GP Appointment with Dr Chape I had to make another doctor's appointment as I can't go on like this. I can hardly do anything. The pressure within my head is worse, and the neck and ear pain/pressure is killing me. Dr C listens to everything I have to say about how it all started and what the other doctors have said bearing in mind this is the third doctor I have seen at the surgery not forgetting the two doctor's at A&E and now in total I have consulted with doctors on 6 occasions. Dr C admits that he has no idea what could be causing the headache, ear pain and pressure or the woosh noise and suggests a referral to ENT would be best. I also mention to the doctor that my pupil on the side of the headache is different and can be really small when the pressure is really bad, he suggests this can be normal when you have a headache. Dr C said he won't offer me any other painkillers as I already take Diclofenac with paracetamol even though I begged and said I need something stronger to take the pain away. I leave with the promise of a referral to a specialist at the Ear Nose & Throat dept. Diagnosis unsure and would like a consultant view
21st Jan 2013 I'm still suffering although I have noticed my woosh is slightly calmer its gone from a quick baby ultrasound noise to a bass drum noise almost like if you can imagine the drum beat noise in the distance of a orange lodge flute band (pow pow pow pow) I can even see the chap twirling his white pom pom like sticks (pow pow pow pow) I do like the sound of a bass drum but not in my bloody head!!! I'm hoping the headache and other symptoms will calm down too.
30th Jan 2013 GP Appointment with Dr Sharma Well I tried the doctor's surgery again only because Mr Wanderer is getting worried about me, I didn't want to go because I feel they don't believe me and I don't think any of the doctors are writing down what I am telling them, most of the time they don't type when I'm in the room. I explain about the noise AGAIN and that its a baby ultrasound noise and its not normal for me, nor is the headache and other symptoms, I also stated I was too young for tinnitus, I never did any of the nightclub thing or wore ear phones but he tells me millions of people have to live with tinnitus. He does a quick exam by getting me to clench my teeth and scrunch up my face. I explained I have started to get a bit off balance when I try to walk longer distances, I feel like I am getting pulled to the left side and I sometimes see blotches in the left eye. Dr S offers me Amitriptyline, I have lost count the amount of doctor's in the surgery that have offered me that over the years. I explain I don't have depression and I can not take it as I don't wake up in the morning but he tells me to take half a tablet as its a very low dose. Before my Ehler Danlos diagnosis every doctor I seen gave me it as they believed I was depressed. I leave with the Amitriptyline feeling bullied and as if I'm making the whole thing up. Diagnosis, unsure, he mentioned tinnitus but nothing of what is causing the rest of my symptoms
31st Jan 2013 I can barely see my mobile phone screen while trying to update my diary, I took one tablet last night and I feel like a zombie. I slept all night but I feel as if I've slept for weeks and can't get out of the sleepy state I'm in, I feel trapped in my body and I'm so slow and brain fogged. I struggled to make the little wanderers packed lunches for school. I actually can't believe people can take up to 75mg of this drug when it knocks me for six.
12th Feb 2013 I honestly can't be bothered updating my diary anymore but I have my ENT appointment through for the 25th March. Hoping they can help me. I've noticed over the last few weeks that I have started getting a strange sensation above and behind my ear that comes and goes, its like spiders crawling across my head and the other night I pressed the area that was sore and the electrical sound got louder.
25th Mar 2013 ENT Hospital Appointment Miss Shanks I had my appointment earlier with the ENT specialist.
The doctor introduced herself as Miss S and said she had my referral from my GP that stated I had a sore ear. I was a bit miffed by the sore ear referral so I went on to explain not just a sore ear, I also had pressure within the ear, a constant headache, a wooshing noise, pressure within my head, neck pain and pressure and new spiders crawling across my scalp feeling. I explained I could draw a line around the full area on the left. Dr S had a piece of paper in front of her A4 in size with a small outlined box at the top to write notes in. She wrote in the box the word “wooshing” and “buzz”. She asked me if I had any nerve pains or twitching going down any of my arms which I said I didn’t. She asked me if I had any dizzy spells and I explained that more recently I have a feeling of being off balance anf getting pulled to the left when walking and especially getting up in the morning where I would stand and feel this roar within my neck on the left, I also explained when I turned my head I felt a strange sensation almost like that side of my head was heavier, the Dr then said “so no dizziness then” I repeated not dizzy but off balance. I have no idea if there is a difference between dizzy and off balance but I explained what I am experiencing in my own words. I mention I can not exercise due to the head pressure. I mention the baby ultrasound noise again and how its recently changed to more of a distant bass drum & whirring noise. The doctor looked in both my ears to compare them and said they looked fine with no infection, I explained none of the doctors could find anything wrong with my ear and that the pain and pressure was deeper inside my ear/head, I explained if you can imagine taking my ear off the pain and pressure is in there, she said “ so if you don’t have pain in the ear where is the pain” I said it is in there but further in than the ear drum, I pointed to below my ear lobe and said if you drilled in there you would find the source of the pain, I know that sounds crazy but I find it hard to describe, Miss S ignored what I said. I decided to explain when it all started and went through the symptoms when they started that one night in October 2012 while watching tv, I felt pressure within my ear and heard a woosh noise, the next day I woke up with a terrible headache and it has stayed ever since, the only thing changing was that the wooshing has settled into more of a whirring/drum beat noise in the last few weeks and that it was like turbulence. I said the only thing I had done that was different that October was I'd painted my ceiling a few days before the wooshing and other than that I have no idea what had caused all of this, I also mention the GP's think it was a coincidence that I painted my ceiling. Dr S asked what treatments I'd had. I went through the list of ear spray, antibiotics, steroid nasal pump and painkillers that I had been given. I explained that I had been using Google to look up my symptoms and I know that I shouldn’t really but when you have had something so long you need to look for answers, the nurse smiled in agreement. The doctor then asked if any of the treatments has helped and I said nothing had and the medication I had been given was the usual things I was given for the pain in my joints and they didn’t help either, she asked if I had any nasal congestion etc. but I didn’t have any congestion although on occasion some mucous drainage down the back of my throat. She then used a metal clip like instrument to hold against my nose and said everything looked fine. She asked if I had my tonsils out, which I had and she mentioned the adenoids, I said I was unsure if they had been removed, she opened up a long instrument that looked like a mirror and she checked the back of my throat and she said it all looked good. The doctor asked me if I’d had my hearing checked and did I think there was a problem with my hearing, I told her there was no problem with my hearing, I could still hear normally over the constant noise in my head. I was then asked to wait out in the waiting room and someone would do a hearing check and pressure test. A few minutes later a nurse called me into the audiology room where I sat with headphones on and pressed a button every time I heard a beep then I had a bud type object placed in each ear where a shot of pressure was forced into the ear. Sitting back out in the waiting room I wondered what the doctor would tell me, I hoped she'd have a diagnosis for me or send for further tests. For once I started to feel positive but that was soon to change. The same smiling, very nice nurse called me back into the room. I sat down and the doctor said “there is nothing wrong with your ear I believe you have muscle pain from your overhead painting”. I repeated muscle pain for six months?, she continued to say I must have done something when I painted the ceiling, I said muscle pain for six months, would you expect muscle pain to last six months? she said “well you would expect it to have subsided by six months”. She continued “there is something called Neuralgia pain, do you know what I mean?”, I said I knew what it was but that’s not what I have. She was becoming stern and said “you don’t have anything serious wrong with you”, “you are doing enough things for it not to be serious”. I was slightly annoyed at her statement because earlier I had explained that I was struggling to exercise and could no longer run because as soon as I exert myself everything gets worse in my head with pressure and the wooshing gets louder too. I had to completely stop all exercise. I started moving my neck to show her, left to right and up and down whilst saying I don’t have muscle pain, my neck is not sore to touch, I have no stiffness and I know what muscle pain feels like I’ve suffered Hypermobility for years, she then noted the word “Hypermobility” down in another box below the notes. Miss Shanks then went on to say “sometimes when you worry about these type of things it can make the symptoms worse” I quickly interrupted her before she finished the sentence, I told her I was not worried about what was wrong with me, I just wanted to know what was causing it and to get to the bottom of it so I could get some treatment and have some quality of live that I had before. She said “what would you be looking for us to do?” I said I want to find out what is wrong with me I’ve suffered long enough. Her reply “sometimes we never get to the bottom of these things and we can only treat the symptoms” she said “there is a scan but that would only rule out anything serious and as you don’t have anything serious, your ear is fine, is a scan something you would be looking for?” She continued that tinnitus is a condition that is not very treatable and many people need to live with it as part of their daily lives. I decided I didn’t like her manner in the way she spoke to me when I asked questions, she wasn’t treating me fairly and had obviously not taken my symptoms seriously, she hadn’t listened to me properly nor had she taken down sufficient notes about what I was experiencing. I was too exhausted to fight my corner anymore and sat quiet as she explained that she would request a scan to be arranged. All I can do now is wait on my appointment for the MRI scan. Diagnosis Muscle Strain
2nd April Emergency GP Appointment Dr Dunne I felt awful at work today to the point I nearly fainted twice, I had made a minor mistake and my colleague would not let it drop and made me feel terrible and as soon as my heart rate rises so does the pressure in my neck and the headache intensifies, this is one of the reason's I don't exercise. I could hear her going over and over the mistake that I had made, this was from the woman who arranged a boiler install in the wrong house. I was choosing to ignore her because it causes the pressure to build up in my head and neck, eventually she got to me and the last thing I remember was her voice droning in the background, I came round and my hands were sweating, I managed to put my head on my desk, my work colleague said the colour had drained from my face and my eyes had rolled white. Eventually I was able to sit up and I started to feel a bit more normal. It happened again two hours later when I realised I had given a customer the wrong information. My colleague wanted to take me to hospital but I settled for a doctors appointment and telephoned the doctor's surgery s and left work early, driven by an engineer from work. At the surgery it was Dr Dunne who I hadn't seen in a few years. When you call my doctor surgery for an appointment that day you are given any one of six doctors. I went through the full saga of explaining what had happened since October and more concerning what had happened at my work, he said that the ENT doctor I had seen was the best in the field and as she had ordered the MRI I was to wait and see what the outcome of that would be, he didn't seem concerned at all and went along with the previous doctor's opinions without taking a doctor's approach of his own. I told him none of this was normal for me but he thought I was worrying too much about it and he said "the more you think about things the more likely the symptoms will become worse" I said I was not worrying at all but when I'm in pain constantly and coupled with several other symptoms I have a right to try and get to the bottom of my symptoms, there's something clearly wrong. He explained that sometimes we become aware of blood flow, normally caused by a blood vessel running close to the ear. He said he couldn't offer me anything but to continue to take Diclofenac x3 daily with paracetamol and if I didn't take it regularly then it wouldn't help with the pain. I asked him about the pins needles/spider crawling feeling that runs across my scalp behind my ear that was becoming more severe and that when I lean my hand on the area the noises I hear become louder, he laughed finding it amusing saying he had no idea what that could be. He said the tinnitus I was suffering from was a separate issue altogether. I was too exhausted to disagree. I leave feeling deflated. Diagnosis wait and see approach
10th Apr 2013 I got my MRI Scan appointment through for late evening of the 15th April. It says MRI Internal auditory meatus Both & Neck so I have googled it to find out more about the procedure and what I can make out is it scans the internal part of the ear canal that carries nerves from inside the head to the ear and that it is done generally with contrast.
15th April 2013 MRI Hospital Appointment Had my MRI this evening that took around an hour, it went ok but I'm a bit confused as I thought it would be done with contrast but this wasn't the case, obviously some doctors order this and others don't. Crossing my fingers that something shows on the scan, something just anything to show that I am not imagining all these symptoms.
6th May 2013 I received a letter today from the hospital stating "This young woman with left earache and neck pain had an MRI scan. (No mention of headache on the letter) I am pleased to inform you that no significant abnormality has been seen within the brain and the MRI of the neck is marked normal. No ENT follow up has been arranged"
I do not know what to do now I was convinced something would show on the scan, I don't know what but anything just something, something to show that the pain and symptoms I have is real. I am a little frustrated by the only symptoms on the letter earache and neck pain, it proves that not one doctor can note my symptoms consistently without getting them wrong , what hope have I got if no one can note my symptoms.
12th July 2013 GP Appointment with Dr Chape Still suffering so decided to see the doctor as I'm flying on holiday in the next few weeks and I'm unsure about the pressure in my neck and head, the woosh is most definitely more of a whirr now its almost like a motor running sound/turbulence in my head but it never leaves, it is a constant rhythm 24/7 its there even when I roll over in my bed. The electrical noise is now across both ears running through my head, I occasionally have the blur spot on my left eye, it almost reminds me of a spiders web and it mainly happens when I'm walking and some times it looks like a worm with a segmented body. Dr C was the doctor who referred me to ENT and my appointment is going well until I question why the MRI was done without contrast, he tells me there is nothing wrong with me and the scan would of picked up anything serious like a tumour, I said I wasn't suggesting anything like a tumour but there is something wrong and I really want to know what is causing all these symptoms. He went along with the ENT diagnosis of muscle pain. I said when since did muscle pain last 9 months and cause headache, head pressure, deep neck pressure, deep ear pain/pressure and tinnitus. His response was that "the ENT doctor should probably have worded it more of soft tissue damage" I asked where the so called soft tissue damage is, my head? my ear? or my neck? and he said that it was probably nerve damage in the head, he said "that was the most reasonable explanation as the MRI didn't show anything" I then asked how did the nerve damage happen and how do I know that its not going to continue and what happens if it develops on the opposite side of my head? he said he didn't know but there was no point in trying to find out what nerves were damaged, he told me that they would no longer investigate my symptoms as far as they are concerned they have had it fully investigated by ENT referral and nothing serious has been found. He told me to continue taking Diclofenac and that I must take it x3 a day to benefit from it, he used the exact same term as Dr Dunne had said a few weeks previous. I leave the surgery and call Mr Wanderer breaking down and struggling to get my words out. I eventually call him back in floods of tears explaining that they won't be investigating my symptoms anymore. Diagnosis soft tissue damage or nerve damage
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