Docs Said I May Need to Tolerate a Disease Forever, I Overcame (Story of Hope)

This is for all you who have T and believe it won't pass. I currently am not sure if I have T or not, quite new to all of this - but I had something else that is right up there with T when it comes to scariness.

One night, I was sitting at the computer, doing nothing out of the ordinary. I had a perfect health assessment, no worries - at all.

Then, all of a sudden, I felt my heart rate rocket up. I panicked, went to the bathroon and gave myself a splash of water to calm myself down, but it didn't work.

I measured the pulse at 130 beats per minute. It took a lot of stupidity on my part, but I tried to lay down and have it pass instead of running to the emergency room.

I laid down, and I felt my neck pulsate, heard the blood rushing in my ears, it wouldn't calm down. So I went to the emergency room and there they found nothing wrong.

They handed me some beta blockers and told me to sleep it off at home. I then pointed out that I am not going to do that, until I have a clearer picture of what is going on.

After some discussion, they told me that if it makes me feel better, they will send me to a hospital for more extensive tests. I agreed and so I went there directly.

At the hospital, they tested me extensively for the entire night and the whole next day. A doc came to the bed where I was hooked up and was like: "we found nothing."

So I did. The next few days, the pulse came down to like 100 beats per minute when I rested. It was an improvement, but it was still really really really scary to have it go quickly like bombombombom when you are doing nothing at all.

The moment I stood up to walk, it was 130 bpm. It was hopeless. I could not sleep because of it. I tried, but it just went on and on as if I was out and running in the field - and not laying in bed.

When I eventually managed to fall asleep, I had bad dreams and would regularly wake up in the middle of the night in a cold sweat, feeling weak, exhausted. I rarely went to school because of it.

My parents took me to a number of cardiologists, and other specialists, but none of them could figure it out. It was the most hopeless feeling in my life, I felt like there was no future.

Cut friendships, no more activity for me. Spent all my time researching on Google, and there I ended up diagnosing myself with IST, which stands for: Inapprooriate Sinus Tachycardia.

Docs I visited mostly didn't hear of it, and it is only by exclusion of symptoms that a diagnosis is made. One cardiologist told me he agrees it is IST and suggested it may be related to another thing called POTS - those two as one. Even worse.

It comes without warning in any person and lasts for a lifetime. No cure, except heart sugery with an extremely low percent of success.

Most people with IST say that drugs don't help them a lot, and the people who had the surgery often claim that IST returned relatively quickly, no actual cure, or cause, is known.

This terrified me. Sone times I felt like throwing up due to all the stress. But you would not believe it. After a year of this horrendeous torture it actually began to normalize.

I am now free from this illness. I still can not believe it. It was the worst part of my life, period. The night it began, I could never have imagined it, much less me having it.

Now I struggle with determining if I have T or if I am tricking myself. In any case, I was hopeless, and it passed. During my illness, I was constantly active on IST support groups and it was a small, small community.

 

???

 

I know someone who has this. There is now a procedure that corrects it with a high rate of success, and is minimally invasive. I believe it's a type of ablation that quiets down the nerve impulse that triggers the muscle. I don't know the specifics off the top of my head. A coworker's relative had the procedure.

 

Believe me if you have T you are sure you are not tricking yourself...mine blast away right now PT and normal T.... I only wished I was tricking myself

 

Thank you for sharing.

What are your symptoms as far as tinnitus is concerned? How loud is it?

 

During the day, I don't hear ringing. I only have a sort of piercing feeling, the same feeling you have when a really high frequency noise is played. I am not sure if I imagine this or not.

During the night, I hear a ringing when I lay in bed. What I don't know is if I am hearing silence, because most people if they listen carefully will hear the "sound" of silence.

I am particularly in doubt because it all began when I slightly hit my left ear, and the ringing afterwards may have given me a scare, anxiety. The IST thing definitely set me up as a health anxiety sufferer.

Also, now its the right, not left ear, that is bothering me. So kind of confusing, all of it. I always tend to get into confusing situations, I never seem to get a clear cut problem. Sucks.

 

It sounds like you have tinnitus. A number of people on this forum had their tinnitus as a result of a head trauma.

When tinnitus is minor, you hear it only in quiet rooms and at night. When it is very quiet, you stop hearing it in your ears, and start hearing it in your head - it is like a background that you don't hear in your ears, but you feel like it is there.

Tinnitus can switch ears and you can experience it in a healthy ear. Tinnitus is caused by brain neurons, so this is not surprising. It has happened to me - I know that I injured one ear, and sometimes I stop hearing T in that ear, and start hearing it in another ear.

The good news is that if it is already that quiet, the damage is minimal and it will get even quieter or disappear in a couple of weeks or months. The bad news is that now that your ears have been compromised, it will take noises that regular people would not even notice for tinnitus to start again. For example, I pressed an old phone set to max volume to my bad ear, and it gave me a second acoustic trauma and T that I am currently trying to get over. So you will have to try to protect your ears from now on.

 

I wish you weren't that certain

 

I am not sure if this piercing feeling is the same as the background noise that you don't hear with your ears, and yet feel like it is there.

This sounds exactly like minor tinnitus.

Most people hear their ears buzzing because most people attend loud concerts. I never attended loud concerts, and there is complete silence in my good ear most of the time. In any case, if yours is so minor, you will get used to it soon. But you will want to protect your ears, as it is easy to go from minor to mild to major....

 

I hope you are right that it will calm down, because I didn't eat today. I don't see myself eating tomorrow. Just hoping that this will pass like IST.

 

You want to stop exposing your ears to noises like that made by a vacuum cleaner, blender, or a lawn mower. You also want to minimize the stress your body is under. Fasting two days a week might actually be beneficial. But not eating for longer than a day sounds like unnecessary stress that might not be helpful as far as your T is concerned.

 

Similar to heart conditions, anxiety can impact tinnitus. I have a heart condition, too, and one that will not resolve with medication but will eventually require surgery. I know it's not easy when we are stressed out, but try to eat well and take care of your overall health.

 

I try to stay positive, but when I think about the fact that my life just began, I am about to start university, get a car license... and then have my life ruined just because I tried to rest my head on my hand. Its... no words.

I just feel a clump in my stomach every time this thought crosses my mind.

 

Have you seen an ENT? Or had your hearing checked?

 

No, I am on vacation in a place with only a basic clinic. I don't know what an ENT could say or do that would possibly make my days brighter.

"Its just an infection, it will pass in a week." My dream.

 

You are most likely going to be fine. This is especially true because you are young. But it may take months before it will go away.

 

They probably have damage to their ears. People are exposed to excessive sound levels all the time. There is "normal" and there is healthy. These are not always the same.

 

Thank you for the encouragement