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Default Nov 18, 2022 at 07:48 AM
  #1
I have had HA my entire life. I think the only time it let up (ironically) was during the pandemic. I think this is because 1. You weren't supposed to be going to the doctor then anyway and 2. I was working from home.. so, if some emergency came up... I could easily handle it (my workplace didn't need me in).

But since going back it has come back with a Vengeance. Even though I don't have to come in all the time, since I am tasked with going in on short notice.. it feels like i am in the same trap as when I was in every day... and because so many people are not in, it is difficult to get coverage.

So sometime around August it seemed like I was having difficulty swallowing. At first I brushed it off because that is odd. But later I posted some where and everyone told me to get to the doctor ASAP. But guess what... it is excessively hard to get to a doctor and I ended up with a PA (no doctor was available) about 30 days later. (wouldn't you think this was an urgent symptom?).

The PA imho was horrible she didn't listen and wanted me to go for a Endoscopy at the end of December. But to me it felt like she was going to order that no matter what. I was ok to do it but I called the hospital to ask about directions and the lady there was super rude. This left me thinking maybe this wasn't the right place to have it done. So I made an appointment with a gastro I trust for February. I hate that I can't get in any sooner but I am on a waiting list.

In my heart I think this is nothing... but that HA part of my head keeps torturing me.

I feel like maybe I should call the place back and get set up again. Just get it over with.

I also thought of doing this... there is a liquid biopsy blood test called Galleri that will test for cancer. It is pretty accurate for late stage - stage 3. And I figured I could get that and if it came back negative do things at my own pace. It is 1K out of my own pocket.

I am in therapy for this but my therapist isn't helping. I mean... she suggest CBT but I am way ahead of her. The basic problem with HA is that it is rooted in reality. It isn't crazy to be worrying in this situation. In fact sometimes I wonder if I just have a more sensitive body than most.
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Default Nov 18, 2022 at 09:58 AM
  #2
Just a side note - there are google map directions. Why would you ask a human if they are so easily and readily universally available?

Do you have your own GP? I would get a complete checkup, or just ask for a visit to assess your symptoms.
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Default Nov 19, 2022 at 07:25 AM
  #3
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Just a side note - there are google map directions. Why would you ask a human if they are so easily and readily universally available?
Perhaps I wasn't clear, I was asking directions for what I needed to do on the day of the procedure. Ie.. does the person I bring have to stay the entire time. etc. The forms they gave me were unclear and I didn't want to show up with a "ride" and have them tell me I couldn't have the procedure, because they needed someone to wait around for me.

I have been to my GP and ENT. GP said, talk to the gastro... ENT did a scope and the area down to my Voice box (all they can see) is fine. She did see some inflammation but she said that could be a zillion minor things. She also said I should talk to the Gastro.

So I ended up calling back and getting an appointment. In someways this is better because it is a better day for me... but I have concerns about doing it on the week after xmas. I remembered when I had a colonoscopy (at a different place) the woman at the desk was crazy rude but everyone in the back was excellent. So I reconsidered. I know I will just continue to torture myself until I get this procedure. And ultimately this will give me insight into if I have GERD or anything else wrong.

I just don't know about the therapy because I am not getting a lot out of it. My stress at the moment is the swallowing and I know the moment I get the test it will all go away. The problem is that about every 3 months I have a 'scary symptom'. I don't know that therapy will stop that.
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Default Nov 19, 2022 at 09:44 AM
  #4
Oh, sorry re directions.

Ive been finding that the body is pretty tough. "Problems swallowing" must have been in a lot of tv commercials, its kinda burned into our brains. It doesnt sound like you are having pain, though, which i think is a positive sign. I occasionally choke up myself, and im like oh no what is that?! But i think it is just me eating too much and or too fast, not being careful. I just recently went thru believinv i had pancreatitis, but two drs said nah probably a muscle strain.

Hope you find your way in this.
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Default Nov 27, 2022 at 07:39 AM
  #5
So, I went back to work this week and that helped. I have come to the conclusion that maybe I need to stop it with the computer on the weekends. But, yesterday in my searching I found that I might not need to have the upper ENT.

I found out that you can have a Trans-nasal esophagoscopy (TNE). That basically is exactly what I had before (via the nose) but it goes all the way to your stomach. You don't have to be put out and it won't trigger the gag reflex.

The only tricky part is that for them to get the thing down your throat you have to drink water so they can get it down there as you are swallowing... but I am willing to try it to avoid the upper ENT.

Got to admit I am annoyed that no one mentioned this. Because it is done in the doctor's office you can get it done ASAP and it can detect almost every problem an upper ENT can (just can't take a biopsy).

I found a you tube video of it and a lot of the comments said it wasn't bad. I have no problem with the smaller scope so I think I could handle this one.
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Default Dec 03, 2022 at 08:20 AM
  #6
So I asked the ENT for the test and her NP told me I had already had it. I nicely told her I had not and included the link because she obviously doesn't know what she is talking about... and they didn't respond to me for a week. So I went to another ENT.

So apparently ENTs are just rude. This new one was rude too and was 30 minutes late to the appointment. I included the information from the other ENT and she didn't even read it and was going to give me a scope -- again. I told her no.

So I am set up for the test I wanted but I have a feeling she is going to make it as nasty as possible for me. She told me she would have to pack my nose with medication to numb my nose. That irritates me. The video didn't have that. I feel like that is something she is doing to make me pay for daring to question an ENT. They also use a nebulizer to put the medication down my throat.

And after she did her own exam she wanted to do something different... a barium swallow x ray. I told her no. A barium swallow xray won't turn up Esophegal Cancer and the entire reason I am here is because everyone told me I MUST get checked up for EC when I have trouble swallowing. So I don't see the point in another test that will not rule EC out.

Once I rule EC out, who really cares why I am having trouble swallowing. I mean I think personally it is related to menopause and less saliva in my mouth. I would prefer not to put barium in me to find out nothing. This is another reason I want Trans-nasal esophagoscopy (TNE) - because it involves zero toxins.

Last edited by NatalieJastrow; Dec 03, 2022 at 08:32 AM..
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Default Dec 09, 2022 at 04:24 PM
  #7
Just a question, how long have you suffered from HA? When was the earliest age you had these triggers? Any thoughts on where they originated?
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Default Dec 11, 2022 at 02:08 PM
  #8
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Just a question, how long have you suffered from HA? When was the earliest age you had these triggers? Any thoughts on where they originated?
20+ years on and off.

30 years old was my first memory of an issue.

I think employment triggers it. Not only that it is so difficult to get time off to go to a doctor but also, I will only get my "pension" if I don't die. So I am on a hair trigger.
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Default Dec 12, 2022 at 06:23 AM
  #9
So I spent the weekend working on this. At the moment I am hopeful I am making progress. I think there are two avenues to pursue.

1. Face and get specific about my personal liklihood of cancer. Over these months I have done a lot of research and I have found a lot of things that make me think my likelyhood of cancer is low. There are several things that I don't have / do that others do that shockingly are responsible for a lot of cancer. And frankly I suspect a lot of the information out there about cancer is not right... such as... that we get it as we get old. Turns out, a LOT of prescription drugs are known to cause cancer but it is kept quiet. Is it that we get cancer as we age or, is it that we take prescription drugs when we age. Anyway I am putting together a cancer fact sheet. I do have one major likelyhood issue, I am 40 lbs overweight.

2. I read two books that have always helped me and they did last night... one called 1. The power of now and the other 2. Brain over Binge. They are two plays on the same thing. The power of now has three points I need to remember - there is no future -- that is a made up illusion. We only have the now. Your brain is diseased and it constantly wants to talk at you - but you don't have to listen to it. Suffering comes from denial of what is. Stop trying to change the world when you can't really. Accept what you can't change or suffer. Brain over bing has a similar idea... basically she suggests the "mind vrs. brain" thing too but suggests your "mad" brain is that was because it is a survival mechanism... something we needed thousands of years ago, but now, not so much.

So the goal would seem to stop wasting my present worrying about the future... but doing that I am almost making the future happen that I don't want. I need to stop listening to the "mad" brain -- and focus on the present. I can change the present... I can't change a made up future. And by focusing on my present I will change the future.

Stay in the present and focus on doing healthy things like -- getting tests, losing weight, but never let your mind take off with you.... keep it in the present.
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Default Dec 28, 2022 at 05:24 PM
  #10
Ok so I finally got a diagnostic test to rule out serious issues with EC. I do not have Esophageal Cancer or Gerd or LPR.

That is a big relief.

The test however, was HORRIBLE. I got the Trans-nasal esophagoscopy (TNE), which puts a slightly larger scope up your nose and down into the esophagus. I had a scope that just went as far as the voice box... so I thought this would be pretty easy.

Noooo.

1. First they had to pack my nose with medication to decongest and numb my nose. That involved sticking cotton up my nose-- FAR... and it was extremely painful and uncomfortable. I had thought at most they would do one nostril but they did both and later chose which nostril to go up.

2. Then they gave me a nebulizer with the packing still in. That was ok but I didn't feel like it really numbed me. Just really uncomfortable.

3. They sprayed this thing down my throat and had to gag me to do it.

This all took about 30 minutes and I only got through it by making me think this would make it so the scope wouldn't hurt... *spoiler alert* it did.

4. It wasn't bad going up the nose but getting into the esophagus was like having a piece of metal smash down into your throat and then, and I didn't think of this, the covering for your esophagus was trying to close the entire time. But the scope kept it open. This caused me to feel the need to swallow.

5. it seemed to take forever and it hurt but once it was over I thought I was done. Nope.

6. My throat hurt like a strep throat. On my drive home I was hacking so bad that I had to pull over. The pain in the throat was so bad I couldn't eat. It has, however, gone down today and I am hopeful it will be totally gone by tomorrow.

I will really have to think long and hard about doing this again if I need to have it done.

Of course she did find something to make me worry about but, overall I don't think it is a big thing. I had some food in my esophagus after 18 hours of fasting and that makes her wonder about my motility. So she wants to get that checked out with another test... personally I don't agree and I think it is due to fasting. This lack of motility could be a reason for the trouble swallowing in the first place so this is helping me get closer to figuring things out.
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Crazy Jan 07, 2023 at 04:32 PM
  #11
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Originally Posted by unaluna View Post
Just a side note - there are google map directions. Why would you ask a human if they are so easily and readily universally available?
They are not easily and readily available to everyone, as not everyone has a smartphone or knows how to use these things well. That being said, these types of maps have bugs in them, as they can give wrong directions. They also don't tell you things like if parking is validated or what street you enter the garage from. Or parking fees if any.

Asking for directions from a human can be one of the few ways we can still connect, especially after the last 3 years. This week a lady stopped me while walking and asked for directions, saying isn't there a grocery store here in this center and she couldn't find it. I was glad to talk to her for a few minutes. I don't know if she had a smartphone or not; I was glad for the interaction and to be able to help someone. An app will not do that.

I miss the days of talking to a business when a person would give you directions. Sometimes it evolved into an actual conversation. Now it's all automated. Press 1 for English, press 2 for directions.

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Really falling down a Health Anxiety Hole

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Really falling down a Health Anxiety Hole

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Unhappy Jan 07, 2023 at 04:35 PM
  #12
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Originally Posted by NatalieJastrow View Post
Ok so I finally got a diagnostic test to rule out serious issues with EC. I do not have Esophageal Cancer or Gerd or LPR.

That is a big relief.

The test however, was HORRIBLE. I got the Trans-nasal esophagoscopy (TNE), which puts a slightly larger scope up your nose and down into the esophagus. I had a scope that just went as far as the voice box... so I thought this would be pretty easy.

Noooo.

1. First they had to pack my nose with medication to decongest and numb my nose. That involved sticking cotton up my nose-- FAR... and it was extremely painful and uncomfortable. I had thought at most they would do one nostril but they did both and later chose which nostril to go up.

2. Then they gave me a nebulizer with the packing still in. That was ok but I didn't feel like it really numbed me. Just really uncomfortable.

3. They sprayed this thing down my throat and had to gag me to do it.

This all took about 30 minutes and I only got through it by making me think this would make it so the scope wouldn't hurt... *spoiler alert* it did.

4. It wasn't bad going up the nose but getting into the esophagus was like having a piece of metal smash down into your throat and then, and I didn't think of this, the covering for your esophagus was trying to close the entire time. But the scope kept it open. This caused me to feel the need to swallow.

5. it seemed to take forever and it hurt but once it was over I thought I was done. Nope.

6. My throat hurt like a strep throat. On my drive home I was hacking so bad that I had to pull over. The pain in the throat was so bad I couldn't eat. It has, however, gone down today and I am hopeful it will be totally gone by tomorrow.

I will really have to think long and hard about doing this again if I need to have it done.

Of course she did find something to make me worry about but, overall I don't think it is a big thing. I had some food in my esophagus after 18 hours of fasting and that makes her wonder about my motility. So she wants to get that checked out with another test... personally I don't agree and I think it is due to fasting. This lack of motility could be a reason for the trouble swallowing in the first place so this is helping me get closer to figuring things out.
That throat thing sounds similar to something I had many years ago. It did hurt to have stuff shoved down my throat, and I also HATE having anything up my nose.

Sigh....some people shouldn't be in the medical profession is they give patients things to worry about, in addition to what they are already worried about.

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Really falling down a Health Anxiety Hole

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Default Jan 07, 2023 at 05:42 PM
  #13
Thanks, as Is typical with my health anxiety my "episode" with trouble swallowing ended followed by new worries.

At my last check up my kidney function looked impaired on the labs. I didn't stress out because I know sometimes eating heavy can cause it and with the holidays I was eating heavy. But I got another test and it was WAYYY worse. My kidney function is "just" at the normal level. Even my doctor is concerned and asked me to get it retested and added a urine. Because I know that eating poorly can cause issues I am waiting a bit to get it done and eating better. But what the HECK. I get tested frequently for a condition I have and my kidney function is always excellent... how could it have fallen so far and so fast? My last perfect test was in October.

And then, my doctor told me to drink water, and I did, and I didn't drink that much... but my eye has gotten red... like a hemmorage. I have seen this kind of thing happen before but it is infrequent... so it went away last night, or so I thought... by 2 PM it is back.. what the HECK. I think it was from too much water -- I am only putting it togther now that it has happened before when I was fasting and when I fast I have more water. In any event I did have my eyes checked last year but when I went to the doctor for another hemmorage they said it was pink eye... but I don't think it was... I have to get into see a doctor but no one is available for this for 2 months - of course. I swear all doctors now have a base 2 month wait.

So two more things to worry about and another 3 month "episode".
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Default Jan 07, 2023 at 05:57 PM
  #14
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..., I will only get my "pension" if I don't die.
Not to be funny, but if you do die, it wont matter about your pension, will it?

And worrying like this probably raises your cortisol level, which isnt good for your health or longevity.

Im not a people person. And i know you dont like therapy. But i think you are looking in the wrong place for the source of your unease / disease.
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Default Jan 07, 2023 at 06:54 PM
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Over the last 18 months I've had 3 different health anxiety situations. The latest is somewhat resolving. I'll likely have another shortly. That's my MO.

With all of them I felt "this is really the one," "this time I really am dying," "this isn't like the other times, this time I really am in trouble." It's exhausting. I've had this off and on for 20 years, maybe more. Every time I felt like I was going to die and every one eventually resolved and I am still here. My parents died relatively young and I'm now in that same age range. I'm not in great health, but I'm not bad either. They had many issues in the decade or so before they died. I think I feel like I'm just fated to have the same outcome as them, so I live a very small life mostly just waiting to die.

Anyway, you didn't want to hear about me. I do understand how very hard health anxiety is. If you're interested I've been watching a channel on YT called Cherelle Thinks. It's a young woman from Wales who's been through a lot of this and has made some videos that have really helped me feel better. Some of them are triggering, but know that she speaks from experience. I wish I had her fortitude.

Good luck with everything.
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Default Jan 09, 2023 at 08:39 AM
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With all of them I felt "this is really the one," "this time I really am dying," "this isn't like the other times, this time I really am in trouble." It's exhausting. I've had this off and on for 20 years, maybe more. Every time I felt like I was going to die and every one eventually resolved and I am still here.
Thanks for the link,
Yes this is exactly what is happening to me. Spell after spell of health issues... and they all come to nothing.

So get this... I got my follow up Kidney blood and urine yesterday, and it was perfect. PERFECT. I am happy but I don't understand. It was only 5 days out from the other test which was enough to make my doctor concerned!

I don't think my therapist understands health anxiety. She is all about CBT, and changing my irrational thinking. But I think the issue with health anxiety is that it isn't irrational thinking. For me it is just that I am more sensitive than most to my body. How do you change that? Ignore it? You can't. Once you know of a symptom it is illogical not to get it checked out. I would argue other people who don't pay attention to their symptoms are the irrational ones.

On my own I have practiced CBT so if I am having an irrational spell I will be able to calm myself but still the 4 month or so trek to get an appointment, get it checked out, and deal with the after effects is tiring.

I feel like the better solution to calm myself is something where I have the power to deal with anything that comes up... such as the law of attraction -- that basically says you can direct the world with your mind thus you can control anything that happens to you...but I have a hard time really embracing that.

My eyes have somewhat returned to normal. My theory is dry eye. I forgot that I took a fatty acid supplement during the fall that I ran out of and I got it to potentially get rid of dry eye. So I reordered it.
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