Fed Up of Medical Appointments and Getting No Answers

[Philippa Graham]

Does anyone else get sick of attending appointment after appointment? This is my 7ish month anniversary with tinnitus & it's been a weird journey so far.

Been diagnosed with glue ear, also have a perforation scar on my bad ear ear drum (no idea if this has any bearing) and it's so full of fluid it looks ready to burst.

My tinnitus started as screeching and reactive - I was hearing all sounds in my right ear as whistles! Very annoying

Then for the past few months it's gone from unbearable level, full head, dizziness, feeling of fluid moving around, sinus/face headache and pain to bearable. It changes all the time and it seems to depend on how full my ear is which I guess points to something wrong in my tubes.

I also recently had micro suction (had to pay to go private as waiting list was too long) as I had a big wax buildup in my bad ear (only happened over the last 2 months not the initial cause of tinnitus) but it seems to have helped the volume level reduce but who knows if that's here to stay or the unbearable screeching will return.

I had two throat surgeries last year so they think maybe that has had something to with it? I'm just sick of people guessing and getting no real answers. Been waiting for ENT for 4 months :-(

 

[BobDigi]

My experience is the people conducting the examinations play a guessing game afterwards. They may as well throw a dart at the list of possibilities and choose one that way. I don't think it's lack of trying. They just don't have a clue what causes a lot of ear problems.

 

[Chinmoku]

Absolutely. I have tinnitus, balance problems and other neurological symptoms plus anxiety and depression. I have seen 3 otologists, 1 neurologist, and 2 psychiatrists. Had balance tests in 2 differenti places. 1 otologist said I had hydrops and wants to do steroid injections, 1 said no hydrops and injections could worsen tinnitus, and the third one is not sure. The recurring theme seems to be that my nervous system is sensitized, following possibly a virus attack, and needs to calm down but nobody tells me how to do that. I'm exhausted and scared and at my wits end and I saw too many doctors already. We would need a central doctor who coordinates the different medical interventions and keeps the different specialists in contact. That should be the GP in an ideal world. Tough luck.

 

[fishbone]

Absolutely. I have tinnitus, balance problems and other neurological symptoms plus anxiety and depression. I have seen 3 otologists, 1 neurologist, and 2 psychiatrists. Had balance tests in 2 differenti places. 1 otologist said I had hydrops and wants to do steroid injections, 1 said no hydrops and injections could worsen tinnitus, and the third one is not sure. The recurring theme seems to be that my nervous system is sensitized, following possibly a virus attack, and needs to calm down but nobody tells me how to do that. I'm exhausted and scared and at my wits end and I saw too many doctors already. We would need a central doctor who coordinates the different medical interventions and keeps the different specialists in contact. That should be the GP in an ideal world. Tough luck.

I truly feel your pain. I have been in your shoes myself and it can be quite frustrating. Just try to have faith and hold it together. I remember having mild dizziness for almost 2 months straight and It was beyond horrible. It would just come and go at random times and it made things a bit difficult. I just told myself that I will beat this and get back to being the old me. I pushed myself and it was very hard but eventually the dizziness went away and I was able to resume my normal routines.

I think having a healthy outlook and diet is very crucial to all of this. I was taking lots of unnecessary supplements, thinking they were helping me, but they were actually working against me. keep your faith my friend. I thought my dizziness would never go away, it was very hard but things can improve.....

You are in my thoughts

 

[Chinmoku]

I truly feel your pain. I have been in your shoes myself and it can be quite frustrating. Just try to have faith and hold it together. I remember having mild dizziness for almost 2 months straight and It was beyond horrible. I just told myself that I will beat this and get back to being the old me. I pushed myself and it was very hard but eventually the dizziness went away and I was able to resume my normal routines.

I think having a healthy outlook and diet is very crucial to all of this. I was taking lots of unnecessary supplements, thinking they were helping me, but they were actually working against me. keep your faith my friend. I thought my dizziness would never go away, it was very hard but things can improve.....

You are in my thoughts

Thank you, fishbone. It has been 9 months now, as you say this is horrible, especially when combined with tinnitus and the other symptoms. Thank you for your support, I am always inspired by your posts

 

[Contrast]

Does anyone else get sick of attending appointment after appointment? This is my 7ish month anniversary with tinnitus & it's been a weird journey so far.

I stopped after my third appointment in early 2018 when I realized no doctors, ENTs and specialists could help me. I learned quick by reading about others on tinnitus talk. I gave up and realized I was doomed.

Get in the mindset that the inner ear is a medical mystery, it isn't well understood and no one can medically treat tinnitus, hyperacusis and noise induced pain.

It's so pathetic how new comers make the same mistakes riding the same merry go round as ones before them.

 

[Candy]

In this case there are clear issues with fluid @Contrast so one had to get it sorted. Hopefully when it subsides the tinnitus also fade. Can they give you something to help get rid of the fluid? Are decongestants helping?
What country are you in?

 

[Philippa Graham]

Considering there are so many contributing factors @Contrast I'm not quite ready to give in trying just yet. I wouldn't call that pathetic, more hopeful ha ha! Tinnitus I can live with - it's the dizziness that is impairing my life (primary school teacher).

@Candy I'm in the UK decongestants helps massively but they aren't keen for me to take them long term :-( The specialist that I saw last week reckoned that it's linked to my throat/tubes. I had tonsil surgery last year that went very very wrong and have never been right since then!

 

[Candy]

Oh I see... If you go to A&E and it's an emergency tell the GP your symptoms are getting worse and ask for an emergency ENT appointment.

Given that your ears are still so delicate I would be mindful of certain hearing tests... however an ENT may be able to prescribe something stronger.

 

[Contrast]

I stopped after my third appointment in early 2018 when I realized no doctors, ENTs and specialists could help me. I learned quick by reading about others on tinnitus talk. I gave up and realized I was doomed.

Get in the mindset that the inner ear is a medical mystery, it isn't well understood and no one can medically treat tinnitus, hyperacusis and noise induced pain.

It's so pathetic how new comers make the same mistakes riding the same merry go round as ones before them.

*couldn't help me.