Relieved to Have Found You! :)

Hi, I am so happy to have come across this site as I really have been feeling so alone in this mess that begun almost 2 years ago. I don't know any person with tinnitus & no one in my life seems to understand how I or every aspect of my life has changed since this has literally crashed in to my life suddenly (or should I say head! ). Ok, so this is my introduction.. I will try my best to not write every tiny detail & will give an outline of scenario... so almost 2 years ago, I was really busy in work for 2 weeks leading up to this weekend, then at the weekend I had a late night, the following day everything appeared normal & I got to bed late that night, I had an episode of sleep paralysis almost instantly on falling asleep, I tried to get up but realised on moving I was moving extremely slow, I managed to stand up & suddenly I literally heard a noise filling my head slowly..so much so, I put my hand to my head and instantly thought something was going to happen in that moment, it reached a level slowly & just stayed there, I stood there for about 10 minutes with my hands to my head, completely confused by this uninvited sudden noise & was undoubtedly worried. That was the beginning. The next day arrived to the office feeling "off balance", woozy, nauseous, generally unwell", I was sent home from work to see a doctor as I began to have "lapses of daze", distant, disorientation, could not concentrate & could not make sense of it, my verbal was interrupted badly, words had disappeared from my mind literally. I left the office & took a fall, went straight to the doctor, I was diagnosed with "vertigo", 2 weeks later it was the same, I was put in hospital, then diagnosed with " a virus", I kept explaining what had happened that night, that I was of good health until then, fit, energetic, motivated etc. eventually I was put in hospital for a brain scan, an MRI.. all came back clear. I was told I had an "unlocated virus".. either in auditory or vestibular area - the noise was/ is 24/7 since then. I had to leave my job Over night, my life changed, Ihad to cut back on exercise, it stimulated the noise the noise, I had to stop drinking my social couple of glasses of wine as I would get "drunk" way too quickly, I could no longer read (cause the no longer read as the noise interrupted my concentration), certain foods began to make me very ill. I lived such a restricted life for 10 months & in it, I as a person changed, I became distant (naturally) I was too consumed by the noise.. I couldn't place external noises correctly for e.g I would hear a noise think it was at the back of the building to realise it was a car ticking over in the front of the building. My doctor told me it was a virus & could take up to 10-12 months before I feel 'ok' again. I began suffering from chronic fatigue, exhaustion, verbal confusion & when I walk I would feel I am not walking steadily. After 1 year, I was sent to an ENT, who diagnosed me with "chronic tinnitus" (it is a static sound constantly), After 1 year & a half, my symptoms would go from being "stable to worse" and back again, I could not "hear myself think" & would get exhausted quite quickly, I began to stay in more & more & do less & less.Just a month ago, I went back to my doctor & told her " this can not continue, I am too young, I want to go back to work, I want to live again, I want to have a drink, run in the fresh air like I used, walk the dog etc. etc.".. she told me she would have to send to a neurologist that she did not know why this is still existing and maybe a residual factot of the "virus", I had so many meds during this time nothing worked. I had anti-virals (the strongest on the market), I had anti-biotics, I had pills for nausea, vertigo, pain relief & many more - nothing worked!! & in it all my immune system is not the same, I have the chronic tinnitus (the biggest problem).. I have had blood test after blood test after blood test, all came back clear, iron levels good, blood pressure good, oxygen saturation levels good, everything good - yet feel so ill all the time & my life has changed, as have I so I am presently waiting to see neurologist but was told last week " it is possible nothing will show up as after virus you may have a residual functional problem, not mechanical (won't show on MRI or scans ), in it all, I now do not recognise some words/spellings when I am even writing, I have headaches, a constant static sound in my head (not ear) it is like surround sound that is with me every moment. I am trying so hard to live my life again, I have made changes to try "get back to work", get back to exercise", changed diet (even though it was already good), I have made changes but everytime I just crash with exhaustion & noise interferes with everything! Any input into any of this from anyone or any input with a similar type of tinnitus, I would be so grateful as I now have lost faith in the medical system & have changed doctor too as I got tired of hearing "well, unfortunately this is tinnitus & there's not much that can be done really".. but at the same time, the quality of my life has diminished & Every day is so difficult with on going symptoms & new ones, all the while the static swooshing sound in my head... (forgive me for sounding so depressing! but this is life for me at the moment) thankyou for taking the time to read

 

Hi Sophie, I'm sorry that you are having such a horrid time...I know how difficult it can be. I am in Edinburgh and if you would like to chat I would be happy to. I can identify with a lot you are going through....
Susi

 

Hi Sophie, sorry to hear all of your problems at a young age (you mentioned you are young).

First of all, don't give up, keep going to your doctors, if your symptoms include much more than Tinnitus, then there should be something else causing all of your problems.

I've had alot of physical problems also. In all this 7 years process, i have had chronic pain in neck, head temples, eyes
and joints, shortness of breath, dizziness, heart palpitations, chest pain, allergy-virus like symptoms, and 3 years ago my Tinnitus spiked to a new level ( I've had Tinnitus since highschool but wasnt a problem then).

For 1 full year, after that Tinnitus increased, my anxiety and depression came into the game. I was feeling it was the end of my life. I was blaming Tinnitus ( mine is a high frequency sound, like a dog whistle, loud enough to hear it over the T.V.).

But, i have a family so i started to figure out how to solve this. It took me more than a year to understand that anxiety and depressión was my biggest problem. I understood that, Tinnitus was loud, but all my other problems were exacerbating my reaction to it. Then i knew that handling my physical symptoms will help me to handle my Tinnitus, and it did.

I have been to more than 15 different doctors, trying to figure out what is wrong with me... and keep finding things in my body that help me to work on that areas, and once I attend those health problems, I improve my habituation to Tinnitus.

For me, Tinnitus is not a problem anymore right now, because i have done great improvements in my overall health. Recently i have found 2 new problems, diagnosed by a doctor a) TMJ and b) Obstructive Sleep Apnea, and it makes me feel good to know that I'm going to start treatment for both of them, and surely will improve my overall health
again.

Please please please, never give up, you are now going to the neurologist, have some faith that someday a doctor will find your physical problem, then you will get it treated, then your ability to handle Tinnitus will increase exponentially.

Hope is the key!

PD: For me, all this started at the age of 26, i also was so young.

 

Welcome to TT @Sophie :) I agree with Johnny above that you may have something else besides tinnitus, and T may be a result of it. You may want to read up on Lyme Disease and its symptoms. Singer Avril Lavigne took 10 months, skipping from incompetent doctors after doctors until she found someone who correctly diagnosed her condition. Now she is on her way back to health. You can google search on her and her struggle with this disease. You may not have the same illness but the journey to find the right cure and the mentality is similar. Good luck and God bless.

 

Thank you so much for your replies was so nice to wake up to this this morning.. @susi, yes be nice to chat sometime..thankyou. @johnny, thank you for sharing your story with me, sorry to hear you've been through that & interesting to read also about the breathlessness as this is a recent new symptom for me too & was in hospital last week for this alone.. if I exert myself too much then I can not breathe properly (bare in mind I was very active, fit etc, used to walk approx. 20 miles a week on average for years & weigh just 58kilos, so nothing would make sense to be so breathless from just walking up a staircase now it is so disheartening & it is true to not lose hope & not give up as I have had times where I thought am I going to be like this from now (& without diagnosis, hopefully not) I miss dancing, walking, running, loud music, reading, sitting in the fresh air & meeting friends (as now it can be embaressing to be in company with jumbled sentences, forgetting words & looking like I am on a permanent drug supply (with tears in eyes but smiling trying to make light of the situation!) so thank you johnny for your input. @Karen, thank you for your lovely msg.. yes Menieres has been mentioned but the ENT specialist told me that she would have diagnosed me with Meneries Disease but I am missing 1 of the most significant symptoms which is a 'continuous dizzy spell' so she ruled that out & wrote on my file "diagnosis - tinnitus", can you imagine ? I know it's more than that my self, will pm you sometime when I have more energy thank you so much.. @billie48, thank you for info of Avril lavigne I never knew this & might be interesting to learn more about her illness & look into this more about Lymes disease, god bless you too! hope you all have a wonderful day!