Be Honest. Do You Still Enjoy Life?

Oh wow! That's awful! How did they find out you had Lyme's in the end?

I also hate how quick they are to rule out anything being wrong, just from one test coming back normal.

Like you say, I would prefer them to just admit they don't know, rather than bullshit like you say.

 

My family lives in Florida. They have a farm out there. I've actually never been - was supposed to last year - but COVID-19 happened. I'm interested to see what it's like, as I've heard mixed reviews. My friend moved from Florida to England - she hates it. However, my family like it.

I think our swimming pools/spas are opening again soon. So as soon as they do, I'll get myself to a sauna or steam room. I could really do with a massage as well. Back is killing me, but that could be lung related too.

 

I asked for the test after months of getting the run around and my titers were sky high. My doctor's response? "Oh, well you didn't have the rash...". By then it was chronic though. I had chronic pain ever since (but I still lived a relatively normal life even traveling and exercising until my hearing issues).

 

I'm in for 16 years now. The first 8 years weren't an issue really. Just a mild ringing, all good. I got used to it after a few days.

Then bilateral SSNHL came, tinnitus got worse. SSNHL came again 2 times, tinnitus got worse again. Hearing never got better again.

The last 6 years the tinnitus has kept getting worse and worse, the last 2-3 years it's basically worsening every few months PERMANENTLY.

Now I have a shitload of sounds, all unmaskable, all really really loud, reactive, fluctuate all the time, it's nothing you can habituate to. You'll never now how it's going to be in the next minutes. Additionally a lot of spikes and fleeting tinnitus episodes.

I'm always angry when people say: it's going to be better if you don't expose yourself to loud noises bla bla bla. No, it gets worse, all the time and still does.

 

Nope. Wishing for death.

 

That's so frustrating. I'm sort of dealing with another potential health issue where they've not been very helpful. Essentially a chronic/embedded UTI. It's been established over the past few decades that the standard tests to measure urinary tract infection are extremely crude and miss the vast majority of embedded infections - they are relying on tests that have been in use since the 1950s. It's funny in a way because it's the exact same with hearing damage - we are still relying on the same outdated and primitive tests.

There's been a great deal of scientific literature on the urinary biome that's emerged in the past few decades and I corresponded with an expert researcher who informed me that the standard tests are often unreliable and that short term courses of antibiotic treatment are insufficient to clear it. Hence, many researchers now believe that a substantial number (perhaps even the majority) of patients who receive a diagnosis of interstitial cystitis/overactive bladder syndrome/painful bladder syndrome in fact have a chronic infection that is not being picked up by the standard tests. Not to mention that those diagnoses are essentially a diagnosis of exclusion. There are a handful of experts who can treat it effectively - thankfully, a number of them are in the UK (in London mostly) and there is a specialist NHS clinic that deals with this although the waiting list is incredibly long. The same clinicians have a private practice though where it's 'only' a 3-4 month wait.

It's so frustrating although I can't say it's too surprising unfortunately as women's health issues have traditionally been neglected. UTI can of course affect men too but it is predominantly a women's health issue. I mean, look at endometriosis - I read that it takes on average 7-8 years to receive a diagnosis because women tend to be fobbed off and dismissed.

I honestly can't deal with having another health issue, just as my hyperacusis has mostly recovered so I would be prepared to go private as soon as possible. I just need to find a grad job first ugh.

 

Come check it out lol. It’s not for everyone but some areas in Florida are really nice and lowkey. Nice place to relax. Definitely check it out when things get back to normal.

 

No. 2 years in and hating it more and more.

 

No, I don't enjoy life. But some of you are so much worse than me. My only problem is tinnitus. That doesn't help me though, since I am so sad for you with multiple issues, and I fear I am next in line to have other issues...

 

If you ever come down and decide to swing by Sarasota, let me know so that I can buy you a coffee or something. It's the least I can do.

You're one of the nicest people on here, Steph. Sorry to hear that you're suffering so badly.

 

This made my day. <3 Thanks @aot!
I would love to meet you for a coffee. I'm sure we could make it happen one day.

 

I had an X-ray done last year, when it first happened, but they didn’t find anything. I’m beginning to think it may be heart related.

Everyone on my father's side of the family, has heart issues - like major heart issues! All of which started when they were young. My heart has never been checked before. My chest (or lung pain) is right sided. I read that right sided chest pain, with leg swelling, can be a sign of the heart not functioning properly. I also have extreme exertion as soon as I move.

I did actually go to the doctors today. She put me on meds for acid reflux, and said wait a month and see if that helps. She saw the swelling in my legs, and decided to have my bloods done to check for a thyroid issue. However, they are always checking my thyroid - it always comes back fine.

 

@Steph1710

Glad you’re getting checked out. I had swelling in my ankles and hands a couple years ago and they did an echocardiogram and other tests. I think my swelling was caused by taking a couple medications for inflammation. It seemed that edema was listed as a side effect. My swelling went down eventually after discontinuing those meds and raising my BP drug dose (Hydrochlorothiazide).

I hope everything turns out okay for you and that nothing is wrong with your heart. Getting an echocardiogram, chest X-ray, and whatever other tests would be a good idea I suppose, especially if heart problems runs in your family. Everything related to health problems is worrisome I know. Tinnitus is bad enough by itself. I have static noise again today that is hard to bear.

 

I used to have swollen feet & after insisting it was worrisome I got an ECG. Tip: book in with the youngest doctor at your GP they tend to have more empathy. But either way INSIST & if they deny ask for that in writing. That usually makes them sit up.

 

Did you ever find out what caused your swelling?

 

Not really. It may have been some medication I was taking at the time but not sure. It went away on its own. Now it only happens if I fly.

They also referred me for a kidney scan.

So definitely push for all the tests. You are entitled.

 

I had an ECG, and blood analysis, then later an Echocardiogram. The doctor mentioned congestive heart failure which didn’t sound too good. Yeah a newer doctor could be more thorough and friendly.

 

Abnormal echocardiogram results help doctors determine if further testing is necessary or if you need to be placed on a treatment plan. When it comes to your heart, there is no room for taking risks. If you experience any symptoms associated with your heart, it's best to see a doctor and get tested.​

Source: https://www.mayoclinichealthcare.co.uk/

 

Yes, I need them to check my heart. My great grandfather died at 52 from a heart attack. My grandfather died at 49 from a heart attack. My uncle died at 54 from a heart attack last year. Two of my uncles have had triple heart bypasses, and another has had a quadruple heart bypass, and my dad is on medication for his heart. And all the women on my dad's side, suffer with angina...

Something tells me, they should really be checking my heart.

 

So sorry to hear that. Are they doing anything for you? <3

 

It was actually mentioned by a doctor after seeing my puffy ankles and hands on the first visit. It was not my regular doctor but someone on his team, a PA. After the echocardiogram, which I believed turn out pretty well, I’m not so concerned any more. I believe if there was a major problem I would have been sent to a cardiologist.

 

Given that you donate to this site and you always leave kind comments, we already know you have a perfect heart ❤️

 

I have the same issue, just with cancer. My grandfather died from cancer. Both uncles on my mother's side had cancer, one of them died from it in 2003. My cousin had testicular cancer twice. My mom had cancer in 2019 and so did my dad. I'm a little worried about cancer.

 

@musicblue

Your kind words just brought me to tears. I’m having such a rough time, and I can’t tell you how much that just meant to me. <3

Thank you, from the bottom of my dodgy heart.

 

I wish our NHS doctors gave a crap, but unfortunately they don’t. They haven’t even looked at my heart. So on Monday I’m ringing back to tell them about my family history of heart problems - which is fairly significant I would say.

And thank goodness that nothing really came of your heart issues! That’s brilliant news! Hopefully nothing ever will come of it. You’ve already got dodgy ears - the last thing you need is a dodgy heart too.

 

@guenguer, do you know what caused your SSNHL, especially since it has happened repeatedly?

I’ve had some recent hearing loss in my left ear. Two hearing shifts in 10 months. Tinnitus started last April, 2020. It was a seashell/echo sound only in my left ear and I got used to it fairly quickly after several months of masking. And then I think it’s sort of improved because most of the time I never heard it and pretty much all ambient noise covered it up. The seashell noise was tolerable. When I plugged my ear I could hear a faint pure tone ring but could not hear it otherwise.

Two weeks ago, the tinnitus worsened and the pure tone ring was dominant. Testing revealed more hearing loss. And it was only a mild shift! What the heck?

Because my condition is unilateral, they are doing $1 million work up to rule out acoustic neuroma and other scary conditions.

Since this new presentation two weeks ago, I have had two nights where it has spiked miserably. Waking up in the middle of the night with a ringing I could hear over everything. Last night it was so bad I ended up taking 1.5 mg of Klonopin to call myself down. I had completely weaned myself off of it months ago and was doing great I used it for sleep. And then when this started again, I was being very careful to keep my dose at .5 mg only per day only when I needed it but last night was awful. It seems to be back to baseline this morning.

Anyway, sorry for the long post. I was just wondering what your experience has been. I’m terrified that as my hearing continues to worsen, assuming it well, I’m just going to end up getting increasingly louder and louder tinnitus and I don’t know how I’m going to manage. All I could think last night while I was laying in bed listening to the ringing was how am I going to work like this? I have two kids to support.

I know my profile says I’ve had to the test since 2015 but that was after noise exposure and it went away. I haven’t been able to figure out how to update my profile.

Thanks.

 

Yeah, seems like incompetent doctors. If you could afford to see Mayo doctors in London that would be the best. Then if you came to Florida you would have Jacksonville, FL close by. They would be able to transfer your records electronically.

My left ear is really staticky sound. It sounds like a mosquito in my ear... drives me nuts. I can't shut it off and makes me real irritable.

Anyway, I hope you get checked out thoroughly wherever you go. I'm going to see a TMJ doctor and surgeon next Thursday at Mayo Rochester, a couple hours drive away.

 

I feel my life has been stolen from me. I have raging tinnitus that is reactive to noise and also hyperacusis. Unfortunately I get blasted by noise on a daily basis by my twin 3 year old boys. It is in no way their fault as they are just being 3 year olds. But I feel like I am being tortured and can’t escape the noise. What does one do in my situation. I can’t leave them and their mom. But I can’t live much longer with this torturous noise. I am pretty much fu@&ed!!!!

 

I had to put my 2 year old into day care. He is going through a stage where he squeals when he is happy, squeals when he is sad, and throwing some epic tantrums. I can't handle the sound so he has to go. Breaks my heart. He was so wanted and I tried 8 years to have him, and now I am unable to take care of him. Not only because of the noise, but because tinnitus & hyperacusis have brought me to my knees emotionally and psychologically. I can't even look after myself.

 

About six weeks ago I was doing some mild exercise and I figured that I hyperextended my c spine, but felt nothing. My neck did not hurt. My tinnitus has been a 10/10 since.

No real difference in C spine can be seen, but sixty-four-section CT scanning shows everything that caused both my physical and pulsatile tinnitus increase.

Very slight pressure from C spine to vertebral artery, but also sixty-four-section CTA from the aortic arch through the intracranial vessels was performed in 3-4 seconds at submillimeter isotropic resolution with superb-quality multiplanar reformats.

Shoulder movement from exercise was cause and also partly due to gaining weight.

Was also having right side chest pain so a trace recorded stress from aortic vessel to aortic arch and then to internal carotid arteries.

Subclavian vein, brachiocephalic vein, and superior vena cava was not obscuring.

I had expected all mention before testing and knew my risk before exercise with moving shoulders.

Besides dental trauma error causing pain and dental hyperextension of neck with mouth open, my other major trauma is an aortic vessel aneurysm. Fast movement of plaque from heart to internal carotids, Eye problems. All this caused from a single 5 second hypertension crisis ( high blood pressure event) due to excitement while moving shoulders.