It feels like it has been another über long week between writing blog entries, yet it has only been 7 days. It is amazing how many “events” can take place in such a small period of time, yet they do, unrelentingly so.
This week I had another hospital appointment, ENT or Ear, Nose and Throat to the uninitiated. It has been years since I have been seen in this department. I was here again, for the same investigations for the same condition Menieres Disease.
I have been suffering with severe bouts of vertigo since I was a teenager. The bouts were far enough apart not to raise any red flags and were diagnosed as Labyrinthitis, a viral ear infection that causes symptoms of vertigo. The attacks at the time would come on with no warning at all. I remember one attack came on when I was sat on the toilet. I must have been about 17 or 18 at the time, because I had to call in sick to work. My memories of this event are crystal clear, the whole bathroom was spinning in front of my yes and all I could do was grip onto the toilet, terrified that I was going to be flung off. Embarrassingly I had to shout for my dad to come and rescue me, as I knew that there was absolutely no way I could walk unaided from the bathroom back to my bedroom. It must have been really awful because at 17/18 there is no way I would have wanted my dad to come into the bathroom whilst I was using it.
The attacks went away as quickly as they had arrived and I thought no more of it. Then in the early 2000’s they came back, at the time I put it down to all sorts of different things such as forgetting to take my antidepressant that morning, stress etc. I never went anywhere without a packet of Stugeron a travel sickness medication. I would take it at the first sign of an attack and it seemed to work. At some point in the 2000’s the dizziness must have got worse and I had a referral to ENT. This was due to my family history of meniere’s disease, my maternal grandfather suffered from it. The appointment at the hospital sticks in my mind due to the dismissive attitude of the doctor I saw. At the time there was no problem with my hearing (I had audiology tests conducted) and my balance was ok (I was asked to walk across the room with my eyes shut). I left the appointment feeling disbelieved and belittled. I never raised the issue again until 2012, my first blog post which gives it a brief mention was in 2013.
I visited the doctor in the summer of 2012 as I had horrific dizziness which was causing me to fall over. The doctor I saw diagnosed me with Eustachian Tube dysfunction. The attacks of vertigo came and went but I noticed that I now had an increase in Tinnitus that I had developed in 2011. The gp suggested that if the attacks didn’t die down I would need grommets. Luckily the attacks went away again and left me alone until February 2015.
From 2015 onwards I have been battling regular attacks, which came 2-3 times a week. They left me totally drained and exhausted, although the vertigo would last just a few hours the after effects would knock me out for 24 hours. By June I had, had enough. My own doctor was away so I could only get an appointment with a locum doctor. Feeling confident that I was speaking to a doctor with no preconceived ideas about my inner ear woes, I raised the spectre of Meniere’s disease. Having done some research before the appointment I knew my symptoms fit with the condition completely. The locum was receptive to this idea and she was the one who told me I needed to take the Betahistine regularly to reduce the excess fluid in my ear. Initially it seemed to work and my ears lost the feeling of fullness they had been having for months. I started to feel a lot better than I done for a while. Then within a matter of weeks the attacks became worse again, occurring every few days.
When you have so many things wrong with you already it can be hard for people to accept that you have yet another part of your body deciding to do its own thing, even those closest to you. It can make things really hard when you are already facing disbelief from the medical profession. So when the day came for the ENT appointment I was filled with dread and was prepared to have a fight on my hands.
Hubby took me to the appointment at the local hospital, it was in a different part of the hospital and it was so completely different from any other area in there, we felt like were on another planet. The staff were friendly and helpful, patients were not treated like a major inconvenience to the staffs social lives. You know where you wait patiently at the reception desk whilst the staff finish their non-work related conversations before dealing with you. Everyone introduced themselves by name and shook your hand!!! We have never been treated like that in this hospital.
My only complaint would be that the waiting room was less than wheelchair friendly, over filled with chairs making parking up and waiting difficult to do without causing a major obstruction. It is a problem I have found in most departments in the hospital, which seems a little illogical as you would have thought a hospital would be the best place to accommodate those with disabilities.
Before seeing the consultant I had to have a hearing test conducted by an audiologist. I was expecting it to be like the ones I have had before where you tap the desk when you hear the sound. Hearing tests have evolved over the last 10-15 years, you now get to push a button. The test had only just begun when my stomach started to rumble the loudest it has done in years. Of course being the audiology suite it is the quietest place in the hospital. I wanted the ground to swallow me up, I was so embarrassed.
The first test was done with headphones on, each ear was tested with noises over a variety of frequencies. You can sort of guess when the noises were coming as they come in sets of three. So you can imagine my consternation when I knew I should be hearing something and I couldn’t. I wanted to press the button, pretending that I had heard it. However I knew in my heart of hearts my hearing wasn’t as good as it had been this time last year. The volume of the radio that I listen to at night had been increased from level one to three. It is now so loud that my neighbours next door have claimed to have heard it. The tinnitus has increased to such a volume that it is becoming difficult to hear things over the constant ringing and I can no longer stand being in complete silence because for me silence doesn’t exist anymore.
I am constantly trying to tune out the tinnitus, it is very difficult of those of you who do not have tinnitus to understand what it is like. Many of you will remember a time where you have stumbled out of a nightclub or rock concert and had ringing ears because of the loud volume you have been exposed to. You know that the following morning the ringing will be gone. For me it is never gone it just goes on and on and on. The only time I don’t hear it now is when I am asleep. It is like a kind of psychological torture and I am well aware of the fact that tinnitus has driven people to suicide. Although mine is irritating, I don’t feel that the only way I can escape it is to end my life. However if it increases in volume much more I know it is going to be difficult to live with.
With the second test they place a small speaker type device behind your ear, so it is vibrating on the bones of your ear rather than the noise transmitting through the ear canal. The third test is the same except on the opposite ear they place a headphone playing white noise. To me it sounded like a babbling stream and quite pleasant. The same noises were played again but you actively have to ignore the babbling stream noise to hear them. I had to close my eyes for this part of the test to be able to concentrate on the noise in my right ear. It was bloody difficult!
At the end of the test the audiologist told me that my hearing although normal in both ears was vastly different in my right to my left ear. The left ear was at the top end of normal, really good hearing. My right ear however on the low-frequency noises was bumping along the bottom end of normal. He asked me lots of questions about why I had been referred to the ENT department, so I explained about the vertigo attacks, immediately he asked if I felt dizzy getting up / standing up. I explained that as I have low blood pressure, yes I did but the vertigo attacks were very different. When I have low blood pressure I feel giddy but the room doesn’t move (like when you get the spins from having one too many glasses of wine). With the vertigo attacks the room spins, I can’t move because I have no balance and I feel hideously sick. I told him I knew the difference between the two. He accepted that and then moved onto the subject of tinnitus.
He told me although my hearing in my right ear was still considered normal, he could issue me with a hearing aid. The hearing aid would be used to increase the volume of the ambient noise around me to drown out the tinnitus. I didn’t realise how dead against a hearing aid I was until the words spilled from my mouth. I told him I already had too much going on with me, I didn’t want to draw attention to the fact that yet another part of my body was defective. He understood where I was coming from and said it was something we could revisit in the future should the volume of the tinnitus continue to rise.
We then went back to the waiting room as I would see the consultant once the audiologist had been through the results with him. I didn’t know at the time that my audiogram was showing the classic signs of meniere’s disease, a reduction in the low-frequency range of hearing. Despite my hearing essentially being normal there was a marked difference between the two. Having since googled Meniere’s I have seen the audiograms of someone with Meniere’s and can see that mine was a textbook example. I wish I had known this at the time because I was very anxious waiting for the consultant, however I have known tests show abnormalities only for them to be ignored by someone higher up. I knew that nothing would guarantee that the consultant would agree with the audiologist.
My ENT consultant was a very lovely man, it was clear from the outset (looking back) that he had all he needed for a diagnosis from the hearing test. He did however go through the same questions with regards to feeling dizzy “was it when I stood up, did it rely on a position, what were the attacks like” etc. He then did his first test which was to poke me in the eye with a small piece of cotton wool. I was glad I had used waterproof mascara after that one because my usually painfully dry eyes ran and ran. This was to test my responses / the function of the cranial nerves. They were all normal, which was what I was expecting. He then got out a tuning fork and tested that I could hear it in various places, including the top of my head. The last test was whether the pitch of the tuning fork was the same in each ear. In my right ear the pitch was just ever so slightly different, which left me confused. It was also louder in my left ear than my right ear. I had no idea what the results would mean and whether there would be more tests to follow.
Having given him the history of how long I had been suffering with bouts of vertigo at the start of the appointment, he gave no preamble and just came out with the fact that I was suffering from meniere’s disease and that I had probably had it since I was a teenager. I sat in shock not because of the diagnosis but due to the lack of hoops I had, had to jump through to arrive at it. I had fully expected to be fobbed off with that it was part of my autonomic nervous system dysfunction or that it was Eustachian tube dysfunction. I hadn’t expected to be taken seriously because lately the doctor’s I have been seeing seem to have reverted back to disbelieving what I am saying, telling me that there is nothing additionally wrong. It made me quite angry as you can imagine but not nearly as angry as finding out that I had been put on the wrong dose of betahistine, it should have been at least double what I was taking. It acts as a preventer of Meniere’s attacks, I could have avoided those months of misery if someone had just treated me seriously.
It makes me sad that despite having what I thought was a good relationship with my gp and my hospital consultant that they had only been too happy to ignore my concerns when I had told them I had become much sicker this year. In August my gp had told me he wanted to take me off the betahistine because it would mess with my ability to balance naturally the longer I took them. At the time I told him I would wait and see what the ENT consultant had to say in September. I am glad I stood my ground because I was told to immediately double the dose I had been taking. He also wanted the gp to prescribe me Buccastem for when the nausea was bad during an attack. The one thing I had been begging for since February was an anti- nausea medication. He went through a whole list of medications which he would be writing to my gp about. He wants me to have them at home so that I can play around with them and work out what combination has the best results.
The consultant told me that Meniere’s can burn itself out but as I had been suffering with it for over 20 years this was unlikely. The main triggers for attacks are Stress (that is a big yes from me) and if you are ill (or for me sicker than normal, that is another yes). He told me that the hospital I attend has a specialist Meniere’s surgeon who if needed would operate on me should the medication route not be effective. I have to be honest after receiving confirmation that I did indeed have the condition the rest of the appointment was a bit of a blur.
When we left the room the healthcare assistant who had been in the room with us pulled us to one side. She asked me if I had ever filled out this form – the form she showed me I had never seen before. She explained it was for patients with “special needs” such as physical, visual, hearing, learning difficulties or if you were at risk from falls. Once completed it meant that your notes were marked with a sticker that let those treating you know that you could need help. I explained that I had been using a wheelchair since 2008 and not once had anyone shown me this form. She was visibly shocked that no one had ever thought to get me to fill in the form. It would hopefully in the future mean that doctors / other healthcare professionals wouldn’t be surprised by me turning up in a wheelchair and that should I need assistance I would get it. Like I said this ENT department was run like it was on another planet and should be congratulated for being so on the ball with everything. I am no longer surprised that the walls were filled with positive thank you cards / letters. The staff really made an effort with everyone and treated them respectfully.
I was exhausted after my trip to hospital and ended up fast asleep well before 17:30. I am still in a daze about the diagnosis and still very angry that my dizziness had been so easily dismissed by all but the locum doctor I saw in June. It seems that despite fighting so hard for a diagnosis from 2007 until 2011, that I have to continue to fight to be heard and validated. Obviously I had no clue that my prolactin was raised I just knew that my system (body) felt out of kilter, I did know however that my dizziness was much more than just the giddiness you can get with dysautonomia. I am not searching for new labels to apply to myself, just decent treatment. What makes me more angry is that my hearing could have been seriously damaged by my doctors sitting on their hands and not referring me. I have said before in blog posts I am becoming increasingly concerned that patients are being ignored more than ever when they tell a doctor they know that something is wrong with them. How many patients will end up having serious conditions missed because doctors are unwilling to have new labels applied to them?
Currently still no MRI results.