It's a Long Story, So I'll Try and Keep It Short (But It Won't Be)...

Discussion in 'Introduce Yourself' started by Owen, Dec 11, 2015.

    1. Owen

      Owen Member

      Tinnitus Since:
      Cause of Tinnitus:
      Unclear. Inflammatory allergic reaction/AIED
      Hello everyone. After trying to go it alone for so long, I have decided to put my story out there to see whether or not anyone else can offer me anything, as the medical profession have all but admitted that they don't really know what they are doing when it come to my case.

      As far as I have been told by an ENT and an audiologist, my case is somewhat unique (or at least very rare as neither have heard of a similar patient), so it is difficult for any professional to offer support or guidance.

      The exact start date of my tinnitus isn't exactly clear, so I don't really know where to start, but I suppose it makes sense to start from where it first bothered me.

      BACKGROUND (you may wish to skip this bit, but it gives context):
      Following repeated visits to the GP with symptoms of extreme fatigue, in 2011, I was first diagnosed with an underactive thyroid. For a further 2 years, this was just a wait and see, with blood tests every 4 months. With little improvement and a TSH constantly over 5, I was put on Levo-thyroxine in April 2013. After a week or so and for around 6 weeks following that, I felt better and better - more like my old self. Sadly, this didn't endure and in June 2013, I was signed off work with the worst sore throat I have ever had in my life (to give a scale of the pain, the NHS removed a wisdom tooth following 5 repeated infections which also resulted in dry socket and this pain was far worse - prescription opioids barely touched it).

      Following the sore throat, I started to suffer with repeated mouth dryness, mouth ulcers (as one healed, the next started, very sore skin, itching and severe allergies - terrible sneezing, nasal drip, congestion etc.)

      Over the next year, I was back and forth to the GP, to hospital appointments, to a Macular-facial specialist at the hospital and dentists to try and determine the cause. I was screened for everything and anything and the conclusion was that I was a bit low on iron and low on zinc and should take supplements. Oral steroids were offered, but were advised against. Another observation which I later found out when I requested a copy of my notes was that my IgA was elevated. In the end, it was decided that it was some sort of auto-immune problem and they couldn't offer anything else to help - as will become a common theme here.

      In around May 2014, I started to notice that whenever I would go from long term exposure in a slightly noisy environment to a very quiet one, my ears would start to ring - and when I say noisy, I mean general office environment levels of noise, so around 70-75dBspl (and this was measured using a calibrated meter, so not really noisy at all). It would take around 10-15 minutes to start and would last for around 30 minutes and then my hearing would return to a completely normal state with no ringing at all. This would happen every single day without fail, but because I was in a quieter environment over the weekend, I would not have it at all on Saturday or Sunday. I had all my thyroid levels checked and they were really good.

      I spoke to my GP regarding this and was told what appears to be a standard line and that there is nothing that could be done. I suggested that all these things could be related to the Levo-thyroxine as they all started after starting it, but was told that it was impossible.

      In early August 2014, this progressed to include a slight Morse code like sound in my left ear. This was very distressing as this was the first time that I had a permanent noise that didn't seem to go. I returned to the GP, but was again told there was nothing that could be done. As they had nothing to offer me, I insisted that my dosage was reduced to see if it led to any improvement in any of my symptoms. In short, it made a slight improvement, with a reduction in the skin itching, but most other symptoms were the same. Having seen some improvement, over the course of the next 4 months, I reduced all the way down to the lowest dose. Many of the symptoms did improve, but there was no change to the mouth soreness or tinnitus - this takes us all the way to December 2014.

      During this time, and odd observation was that when lying down the Morse code tinnitus would switch sides, seemingly related to which side of my head was lower. Not instantly, but almost like a ball bearing slowly falling through thick oil. In Late January, it seemed to fix in my right ear, with no ringing/tinkling in the left.

      At this point, when upright, it was reasonably quiet, just tinkling away in the background, but when lying down, it took about 20 minutes before it got louder and louder. This was and still is measurable, as I can place a sound source nearby and see the need to keep turning it up and up to mask the tinnitus. This gets worse and worse until eventually, if I fall asleep, this is screaming in my right ear when I wake in the morning.

      I take a business flight in February and when descending on the return flight, despite chewing gum, my right ET is so blocked, it will not equalise at all and is excruciatingly painful, failing to equalise until I perform the Vasalva maneuver once on the ground. My ear pops loudly and the pressure is relieved. There does not appear to be any change in the volume of the tinnitus as a consequence of this.

      Eventually, against the advice of the GP, I stopped Levo-thyroxine altogether in April of this year. My expectation was that the oral soreness would improve. To my amazement, 48 hours after stopping, the ringing stopped. The other symptoms eventually started to subside, so from here on in, I shall focus on the tinnitus. For 3 days, I thought the nightmare was over. Then, on day 4, all hell broke loose. I was sitting on the sofa and it sounded like a jet engine was taking off in my head. The roaring was so loud that I could not hear anything else at all unless it was extremely loud. Terrified and having previously read that tinnitus is sometimes associated with Thyroid problems, I took a single Levo-thyroxine tablet. 24 hours later, the roaring stopped. I only took the one and then 2 days later it returned. I did this several times and it formed a highly repeatable pattern. Eventually I decided to just go for it and go cold turkey and see what happened.

      Over the months since, I have lived a nightmare, I have had blood tests for the thyroid and although a little low, they are just about holding in the range that would be borderline not treated in the UK (TSH of 3) - a dietician has suggested that my attempts to really support my thyroid with foods very rich in nutrients could be affording it enough to just about keep it at a reasonable level. The roaring went from being continuous to intermittent and new noises developed. The noises have been nothing short of horrific. I have had bilateral sounds like space invaders being played inside my head, sometimes gas leaks, sometimes roars, rings, screams - you name it, I've heard it.

      In addition, some days when I woke up, my ear would be full of liquid - not imagined, I could press the tissue around my ear and I could hear it squelching inside. My ear was completely sealed shut on the inside of the eardrum when lying down and I would need to sit up for about half an hour and I would slowly hear and feel it drain away. By the time I saw my GP, or ENT though, the fluid had completely drained.

      Also of note is that I took a flight again in October and during the ascent in both directions, I heard a continual series of bubbles in my right ear and right hand side of my skull, as the cabin pressure reduced, forcing air out of my sinuses and ear.

      By and large though, but at a glacial pace, my hearing has improved. The bilateral tinnitus noises are a lot less than they were, with the "jet engine" roaring having not appeared now for 2 or more months. I still get the gas leak noises on and off, but they are not as loud as they were. Sometimes I still get the 30 minutes of ringing when I get back from work, but not every day and sometimes, for no apparent reason at all, it just goes silent, with no tinnitus at all. So for up to about an hour or so, in a totally silent room, my hearing has been perfect...

      However, over the past week, the severity of the ringing in my right ear has started to get worse. Whilst all the other issues seem to be improving, albeit slowly, this is getting worse again.

      My right ear is quiet and mostly tolerable whilst upright, but when I lie down, it goes mad again. What is strange is that there does seem to be a really strong link between the severity of the ringing and the level of blockage in my ear. People often talk about a fullness sensation in the ear on tinnitus sites, but do they mean it feels full, or it is full? In my case, I'm sure there is a genuine anatomical anomaly. If I have been lying down for an hour or more, when I swallow, there is a deep thud that occurs deep inside my right ear. It isn't the same as the noise from normal ETs cracking, a sound I have become very familiar with, it is a deep noise that I can feel ricocheting all the way to my eardrum that occurs right the way through the whole right side of my auditory system and yawning produces a lot of really squelchy sounds in that ear that are not present in the left, or when upright.

      I know that I have suffered some form of allergic reaction to Levo-thyroxine. I am well aware that many people would be prepared to argue that you can't be allergic to Levo-thyroxine, but I am (and not the fillers either as I have tested against all the listed fillers since and none of them showed an allergy). I'm not looking to start a debate about that.

      I have hypothesised that what I have encountered is some form of inflammatory response that has affected multiple systems, including my sinuses, ETs, skin, mouth etc, but that the very narrow drainage areas and mucous membranes within the sinuses and ETs take longer to recover due to blockages and the inability to effectively clear.

      As a couple of final observations, if I place my smallest finger on my right hand into my right ear canal and very gently pull, creating a minute vacuum - and it only has to be minute, probably only a millimeter of sealing - the tinnitus goes. Equally, if I pop my ears with the Vasalva maneuver, it goes - but if I yawn, or internally hiccup, hence pulling up the soft palate, it starts the noise again. Back when it all started, I was unable to get enough pressure into my ear to pop them. However, when lying down for more than an hour, I am neither able to pop my ears, nor does creating the tiny vacuum in my ear make a difference.

      What I am hopeful for is that someone has suffered tinnitus from some form of allergy. Did it continue to improve in time? Do you suffer terribly when lying down and physically feel liquid pooling in and around the sinuses and ears, waking up with terrible pressure built up? Has anyone had ET problems that once they resolve, the tinnitus gets a lot better. I could reasonably cope with the quiet tinkling, but the terrible sounds I hear when lying down can be truly horrifying - not least because suffering from under medicated thyroid problems makes me more tired anyway, so I really need the sleep.
    2. billie48

      billie48 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      Cause of Tinnitus:
      not sure
      Welcome Owen. Sorry about your struggle with T. Yes, when T is new, it seems to morph with varying symptoms which can also depend on what triggers the T, such as drug reaction, acoustic trauma, ETD, infections with ear pressure and fluid buildup, hearing loss, allergy & sinus problems, etc. etc. Here we have members who may have similar symptoms you are having and they do get better and write their success stories. For ETD or other symptoms of yours, you may search the Success Stories forum with each symptom to see how those members have overcome those symptoms. Usually the ears and ringing may take 6 months or more to stabilize. So it is best to not freak out too much while waiting for the condition to settle. Get the doctors/ENTs to check out to make sure there are no underlying medical causes of the T. If things are ok, then you can do the following to see if they can help you:

      When T is new and the ringing is causing much anxiety and panic, it is advisable to get masking ASAP so you won’t be so anxious and fearful. Stress and anxiety are toxic to T. So try masking if you haven’t done so. Here is a TT thread with an audio player for many good masking sounds. It also comes with nice tips for new sufferers . There are also links to ATA & BTA with loads of more info. The more you understand tinnitus and how it works, the less fearful and stressful you are and which is good for T.
      If you need more masking sounds, here is free ‘aire freshener’:
      Rain sounds are soothing indeed. How about making your own rain sounds with this rain generator:
      And if you need DIY notched Acoustic Coordinated Reset Neuromodulation (ACRN):

      Supplements, diets change and sleeping alternatives:
      Members here often recommend some good supplements, such as NAC, Magnesium, Zinc, B12, D3, etc., and reduce intake of salt, sugar, MSG, caffeine, alcohol etc. You may also want to help yourself to get more sleep. Sleep deprivation is one sure way to fire up T. Get some bed time masking such as a sound machine or a sound pillow etc., so you can fall asleep better. Instead of sleep meds from the doctor, you can try natural alternatives such as Camomile tea, Hops, Valerian tablets, Melatonin etc. Check out this site on using natural herbs for sleep problem:

      Prednisone treatment:
      Since your tinnitus is so new and may be related to acoustic trauma, you may want to get your doctor/ENT to prescribe a course of prednisone or other corticosteroids. Members here often recommend new T patients to get this treatment as soon as possible. Here is a discussion thread on this treatment:

      Read success stories:
      Try to read as many success stories as you can. They can help lift your spirit and reduce your anxiety. They also contain insights and wisdom from those who have gotten better. I was in a mess a few years back afflicted with ultra high pitched dog whistle T and severe hyperacusis which turned all normal sounds unbearably loud and piercingly hurtful. I also had relentless anxiety and panic attacks. I never thought I could recover and have a good life again. But here I am living a normal and absolutely enjoyable life. I list some pointers which have helped me greatly. If you wish to read it, here is the link:

      You may want also to read the most read success story ‘Back to Silence’ with a simple effective strategy by IWLM:

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