Be Honest. Do You Still Enjoy Life?

I get waves of bad stuff (in 2020 I had a "regular" spike, a bout of pulsatile tinnitus and a bout of middle ear myoclonus AKA "clicking"). However, between the waves of crap, I also get good periods. Met a sweet girl, had some success with investments. Or just simpler stuff, like back-to-back nights of good sleep.

I'm kinda getting used to the ups and downs. The downs don't scare me all that much; and I don't expect the good stuff to last any more.

Overall I'd say I'm okay with life. There are lots of sweet moments. However, I'm also very aware of how fragile it is, and it has solidly cemented my decision not to bring a child into this world. I'll bear these burdens but I will not force another soul to bear them, too.

 

I think about this often. The amount of suffering I'm going through is inhumane. I had my children before this madness, and I had not been immune to health problems, but this surpasses anything I could imagine. I was given surgery with ineffective local anesthesia on my wrist, I had a painful appendectomy, I beat very painful IBS, I beat severe mood disorders, they sew my lips without anesthesia after a street aggression, but all this stuff was nothing compared to this inner ear torture. I was ok before this, illness is part of life and one can still find joy and meaning in pain, but this is too much and it does not kill you. A torturous condition that does not kill you.

This is where I draw the line and now I regret having brought two innocent souls into this horrid world where there are conditions they might experience that should be forbidden by cosmic laws.

After my plight I found out about other horrors like regional pain syndrome, ME/CFS and the likes.

So I agree with you, unfortunately, except that for me it's too late. I only hope my children will be luckier than me with their health.

 

You couldn't have known... you're absolutely not to blame. May you get better and may your children live in vibrant health.

 

For me, it's all torturous. Hearing loss tinnitus, vein and artery disease, organ diseases and other very painful physical conditions causing physical and pulsatile tinnitus. Cut nerves in mouth and pain in and behind eyes with losing vision as well.

 

I voted yes, because mostly I do. However, my breathing is terrible. The past two years I've suffered from extreme asthma. I'm on COPD medication and steroids.

Tinnitus was a walk in the park compared to not being able to breath/constant burning lung pain. That gets me down way more than my tinnitus and pulsatile tinnitus.
I have also developed a host of other problems that I can't be bothered to name, but they all make living an uncomfortable experience. I try and kid myself that I'm still fine - but I know I'm not.

Three years ago, I was so healthy, I could climb up a mountain with absolute ease... These days, I struggle to get up the stairs.

 

*big social distance hugs Greg*

It's awful to think how much you and others on here must be struggling. It seems for a lot of us, tinnitus is just another problem on top of a whole lot else.

 

I'm speechless, you are so valiant in helping so many of us despite all this. You are in my thoughts, Greg.

 

No, definitely not enjoying life like I was before my tinnitus got really loud. I'm not the same person at all. My family and hope for a cure are what keep me going but having been totally obsessed with this tinnitus has affected my relationships. It has been by far the toughest time in my life and the pandemic doesn't help. On the upside I took my first Melatonin last night and slept 5 hours straight. The best sleep I've had in months.

Please let Frequency Therapeutics' FX-322 be a success and please make it affordable for all.

 

Trust me. It doesn't matter. Suffering is suffering. I think you might suffer even more because you know a different time.

 

Sorry to hear about your breathing issues. I can relate having had asthma and allergies all my life and a COPD diagnosis last year. Symbicort and Spiriva have been extremely helpful for me. Hope you can find something that works for you.

 

I lost my life.

 

Yes, but presently I have few health problems besides tinnitus which I managed to get somewhat used to. 14 months ago when my tinnitus first increased and my body was still in pain from Lyme disease I had no idea how I was going to continue living.

 

Thank you Dirtyworks <3

I’m currently on Symbicort and Prednisone. However, neither work for me. I’m now about to go private so I can actually have a CT scan on my lungs. I need to know if there’s something else going on? I’m in England, and here the doctors won’t even see you, let alone refer you to a hospital. I’ve not even been to a respiratory clinic yet. They refuse to let me see anyone. Instead, they have done what our “oh so famous NHS” always does - stick me on meds without any investigations.

I’m so sorry to hear you have COPD. *hugs* My aunty had the same thing. She was a heavy smoker though. May I ask how they diagnosed you? And also, what are your symptoms? Do you have a lot of chest pain. Today right lung is killing me.

Steph <3

 

I'm ashamed to admit it but I smoked for several years as well, not the brightest thing for an asthmatic. However, I quit 6-7 months ago and am breathing much better every day.

I was using way too much of my rescue inhaler (Albuteral) so my doctor had me see a respiratory therapist. She asked me questions and performed a breathing test. I forget what it is called but you blow into a mouthpiece as hard as possible connected to a computer that measures lung capacity. Sorry to hear you're having chest pain but no I have never had any except when I used to get pneumonia. Working in electronics I did a bit of soldering and pretty sure that caused it. I could feel sharp pain when I breathed in deeply. Antibiotics always cleared it up within a few days.

My 96-year-old mother unfortunately has bad COPD. Mom smoked for many years but hasn't now for 20 years.

It's very hard with COVID-19 to get in to see some specialists here in Canada as well. 6 months wait, 2 more to go, to see ENT regarding my tinnitus. First place I was referred was 1-2 years.

Actually come to think of it she may have had me go in for a CT scan on my lungs as well before she made the diagnosis. It was a couple years ago.
In Canada's health care system “squeaky wheel gets the grease”, of course it always helps if you know someone. I hope you can get to the bottom of it sooner rather than later.

Best of luck.

 

Yes when I had tinnitus with minor hearing loss. No when I now have tinnitus with moderate hearing loss.

 

Chinmoku - you have ME/CFS?

Best,
Adam

 

No, but Pregabalin withdrawal and past mood disorders gave me symptoms similar to it for some time, so I learned about it. At some point I thought I even had MS during withdrawal.

Today is another horrible insane tinnitus torture day, like any other day. I'm planning to sell my motorcycle when I feel a little better, as I will probably never use it again and it has been unused for more than one year. Allan had to sell his piano. What a cruel world and horrid condition and useless medical establishment. I wish I still enjoyed life.

 

Not enjoying life. If I were to choose to be tinnitus free or win the lottery, I would choose silence.

 

Yep, 24/7.

 

You could give me the wealth of Elon Musk and I would still be miserable. No amount of money will replace the torture this brings 24/7. Companies like 3M should be forced to pay for research to treat tinnitus. Veterans use earplugs and have this after service.

 

Interesting hypothetical, I would choose the same. I’d prefer to wait and see how FX-322 trials succeed though.

 

We seem to have some similar issues going on. I think you mentioned something about ocular rosacea before, so we both have different eye issues but I believe our symptoms would be similar. I was also diagnosed with asthma back in June last year, just a few months before the tinnitus kicked into overdrive. My main symptom is coughing. I get out of breath pretty easily too. Singulair is what has been helping me the most. I've tried Trelegy and Symbicort but they both just make my cough worse.

 

Mmm... That's pretty interesting. Our symptoms are incredibly similar. I bet there was some trigger that set us off.

I developed ocular rosacea first (2019), then tinnitus, and my lungs worsened in 2020.

I've always had asthma, but this feels like something different. My lung physically hurts all the time. And feels like it's hot. My legs keep swelling up too.

Do you have any other symptoms, like chest pain at all?

I can't even see a doctor. I've been trying for nearly a year. COVID-19 means the NHS has come to a stop.

They said on the news the other day, that so far there's a backlog of ten million people who should have had treatment/operations in the past 10 months, but the hospital put them on hold - this includes young people needing transplants, and cancer patients. So them seeing me for a painful lung, probably is never going to happen.

I've now looked into private health care. It's going to cost a small fortune, but I really don't have a choice. I mean, I've been waiting for a stent in my head for over three years! They can't even get me the scan so they can do it.

I swear, if I hear one more person born before 1980, tell me the NHS is marvellous, I'm going to hurt them in ways unimaginable!

Sorry for the rant... You opened a whole can of worms there. I'm very stressed atm. Ha!

How are you getting on these days? Has the tinnitus settled down at all? Mine has been pretty well behaved for a while.

 

With the wealth of Elon Musk you could give promising research the kick in the pants it needs, then pay for all treatments out of pocket.

 

This is disgraceful. This is why Americans are so against socialized medicine. You should not have to wait more than a week or two to see any doctor.

 

I live in the US and I can never ever see a doctor in under 2 weeks. Probably depends on where you live.

 

Thank you for saying it's disgraceful, because that's exactly how I feel about it. It nice to hear someone else say it. <3

Yeah some people think the NHS is great because it's free - but what is the point if they won't do anything for you!

I would happily pay for health care if I knew I they would do the operations for me...

I've looked into private health insurance, but because my conditions are all preexisting, I'm not covered. So I'm now having to pay literally thousands just to get some help.

 

I guess. I live in metro Detroit and I've never had any problems getting into seeing a doctor.

Yeah I'm good on all that. There are Canadians who come to Detroit on droves to see doctors. I have been very disappointed in doctors in general being none of them actually want to do anything to help.

 

Socialized healthcare used to be good when... it was socialized. I do not know about the NHS (but I bet it's the same) but the Italian system used to be quite efficient before politicians started to slaughter it just to replace it with some private surrogate. Same for the Swedish one. 20 years of progressive underfunding and what we can admire now is the crippled outcome. In some regions you can still see a specialist in few weeks though, or if you are lucky even at the ER.

 

Overall I'm glad to live in a country with universal healthcare and think the US is a notable outlier in not providing this for its citizens - it's rather backwards and strange IMO. The NHS has probably saved my family tens, if not hundreds of thousands of pounds worth of medical costs and I am freely prescribed medications that would probably cost me hundreds of dollars a month if I were in the US...

On the other hand, the NHS is far from perfect and sometimes it feels like you can't criticise them without it being seen as 'hate' especially during COVID-19. It doesn't help that they've been chronically underfunded - it desperately needs more funding. I'm currently dealing with another medical issue for which the NHS is pretty useless so I am thinking about going private too. Another issue is postcode lotteries - sometimes there are only a few areas where you can access quality and specialist care for a particular condition. Just off the top of my head, I'm aware that care for conditions like ME/CFS is pretty lacking from what I have read (CBT is offered and GET) and there are conditions like endometriosis which affects 1/10 women yet it takes on average 7-8 years to get diagnosed here (although I think these issues can be pretty universal and not necessarily specific to the NHS as women's health has traditionally been pretty neglected).