Help wanted (Score so far related)

[Jersey Girl]

Hello Folks,

I don't usually ask for help for myself here but I need some information if you have it. This is going to be all over the place so bear with me. I'll do the best I can here. I tend to be very private so this is hard for me which is why I'm posting this in this particular forum.

If you have read the Score so Far thread (that I started years ago) fairly recently, you will see that I've lost weight. My last weight at the doctors about 2 weeks ago was 93 pounds. The BMI calculators/charts put me at "normal" weight. I've averaged about 2 pounds a month weight loss and I know you're going to say that's great, good for you!, how'd you do it, etc.

I did it because I'm a mess and here is why. I'll make a little list.

1. I get AFIB/RVR which is a heart rhythm disorder that comes and goes. Without detailing the whole nine yards journey, I now average about 1-2 times per year (could be a 3rd one in there somewhere) which is a vast improvement from where I started. Sometimes I can cardiovert myself. Sometimes I can't. When I can't I have to go to the ER to have my heart shocked back into rhythm. I'm not afraid of it except for the fact that if I had to have my heart shocked, sometimes I get post traumatic stress symptoms that last 1-2 weekis...except for the last 2 times wherein I was perfectly fine.

2. The type of AFIB I get is related to digestion and vagus nerve stimulation. When it happens, it's always after a meal. Always.

3. Because it happens after a meal, I began eating smaller portions and for the past 10 years I've eaten heart healthy. In other words, I eat the type of foods that we're all supposed to eat only over the past couple of years I started reducing the portions. I try to eat healthy snacks inbetween meals.

4. I can't recall how long I have had AFIB but the result is that I'm often afraid to eat. Even the small portions, but I do eat them.

5. The fear is related to reality and it's mainly about developing PTS symptoms. It kind of paralyzes me for 1-2 weeks. I fly in the face of it, but I hate it. Be clear. I am not afraid that AFIB is going to kill me. I'm not afraid of the heart shock. And Lord knows I love the propofol they knock me out with.

6. I'm not depressed. It's about anxiety. Food anxiety that is based on the reality of my circumstances. And the fear associated with post traumatic stress symptoms.

That's how I lost weight. I'd like to gain some weight back but I have no idea how to do that when I'm stuck like this.

In the past couple of days I've become totally fed up with it all. Sick of it. Sick of it all. Sick of being afraid to eat. Sick of waiting for the other shoe to drop that sends me to an ER. Sick of walking on eggshells. Sick of worrying that I'm going to wreck a special gathering with family. Sick. Of. It. All. I hate this. I hate it so much. I can't eat right. I can't sleep right. I'm hyper aware of my heartbeat. I can tell you what my heart rate is without using an app within 1-2 bpm accuracy. I'm basically a mess but you'd never know it if you were face to face with me. You'd think I was a happy camper all peaceful and calm, interested in what you have to say, be bopping through a store with a smile on my face, but inside I'm usually stuffing down misery unless I am super immersed in something or dancing, and then I have real peace. I'm so tired of it I can't even tell you. This isn't me. It's nothing like me.

I've got an appointment with my primary coming up soon to address this and what I think is going on with me.

Which leads me to how you can help if you have the information.

I've googled my entire behind off by now. I think I have an idea about something. I have many of the symptoms of hiatal hernia. Not all of them. Yes, I know what the tests are. That's not the thing. Here is the thing and I know I'm putting the whole cart before the horse here. Still, I need real information from real people.

Have any of you had laproscopic hernia repair surgery? If so, how was your recovery? If so, was it worth it to you in resolving whatever symptoms you had?

I don't need to know about your symptoms unless you feel you want to say. I am most interested in recovery and outcomes from surgery. Years ago, I had gall bladder removal and I assume the recovery is something like that. I don't mind the idea of recovery or even more weight loss in the process (I've read about the post op dietary needs) if it will help me recover from these disturbing symptoms in the long term.

I thought hiatal hernia was something that only obsese persons developed. Apparently that is not so. When I read through the list of symptoms and got to the "feeling that food is stuck" in a certain area...ALL my alarms went off. Also, hiatal hernia is associated with AFIB. I've known that part for years now but never suspected I might have been developing this.

I know I don't know what is wrong with me. I know I'm getting ahead of my skis. I know I might be wrong and something else could be the culprit and that it could be something really terrible but I feel pretty well convinced that this could be the problem. I have a good track record of sorting symptoms where it turns out that I'm exactly right.

Sorry about the rambling. Here are the questions again.

Have any of you had laproscopic hernia repair surgery? If so, how was your recovery? If so, was it worth it to you in resolving whatever symptoms you had?

Thanks for wading through this. It's really hard for me to put myself out here on some issues. Others not hard at all. I've probably posted most of my life story on this board. But, this one is hard for me because I'm in a sensitive place about it, so please be kind. I count my blessings every single day. There is a whole list of things that aren't wrong with me. There are a whole list of things that are right with me. And believe it nor not my heart is healthy. I take pleasure in simple things and thank my God every day for the experiences and people that bring me joy, for the hope I always seem to have, the glass that is always half full, and for the important lessons I've learned along the way.

I just need some help here and if you've got it, please post it here. If you aren't comfortable with that, you can talk to me in messages. If I don't get back to you right away, it's only because I'm distracted by anxious feelings. But I will get back to you, I promise.

Thank you so much for reading this,

Jersey

p.s. It's almost quarter to 4 a.m. See what I mean?

[Doctor CamNC4Me]

I don’t have experience with that, but I’m posting in solidarity. I won’t post platitudes because I dunno, they seem cheap. I’m curious, though. Are you seeing a specialist, and if so, what is their diagnosis?

- Doc

[Chap]

Have any of you had laproscopic hernia repair surgery? If so, how was your recovery? If so, was it worth it to you in resolving whatever symptoms you had?

I don't need to know about your symptoms unless you feel you want to say. I am most interested in recovery and outcomes from surgery. Years ago, I had gall bladder removal and I assume the recovery is something like that. I don't mind the idea of recovery or even more weight loss in the process (I've read about the post op dietary needs) if it will help me recover from these disturbing symptoms in the long term.

Laparoscopic gall bladder removal is not difficult to recover from, and not really very painful, although since there is some damage to the liver as the gall bladder is removed you will have a week or so of dark urine as your white cells clear up the dead tissue and dump the residue in the blood for the kidneys to filter out into the urine.

The Laparoscopic repair of an inguinal hernia is a three-hole job just like the gall bladder removal, and (according to a surgeon) it is likely to be a quicker recovery than gall bladder removal because it just involves blocking the gap in the abdominal muscle wall with a piece of special gauze.

The website I have consulted says of hiatus hernia treatment by laparoscopy:

After surgery, it usually takes:

2 to 3 days to go home
3 to 6 weeks to go back to work
6 weeks before you can eat what you want
a few months to recover from side effects like bloating, burping, farting and difficulty swallowing
There's a small risk (about 1 in 100) that your side effects will not go away and you'll need more surgery.

But as you will see, surgery need not be the first resort in this case.

Hope this helps.

[Gadianton]

I have many of the symptoms of hiatal hernia. Not all of them.

How do those symptoms compare with acid reflux?

[Marcus]

Have any of you had laproscopic hernia repair surgery? If so, how was your recovery? If so, was it worth it to you in resolving whatever symptoms you had?

Has your doctor diagnosed you with a hiatal hernia? If so, are they recommending this surgery?

[Jersey Girl]

I don’t have experience with that, but I’m posting in solidarity. I won’t post platitudes because I dunno, they seem cheap. I’m curious, though. Are you seeing a specialist, and if so, what is their diagnosis?

- Doc

Thank you. You don't know how much it means to me that you didn't post platitudes because, quite frankly, they are useless words though I know people mean well. Not seeing a specialist yet. Starting with my primary in an upcoming appointment on Sept 11th. She is incredibly smart, I love her, and have full confidence that she'll point me in the right direction. Testing first, I am sure. All this time I've tried to cope as best I can, doing things I know that are helpful to me.

But as I indicated in the OP...I feel like I'm stuck in a cycle, losing ground, and completely fed up with my circumstances and that is the attitude always leads me to launch into pursuit with a vengeance.

I want out of this mess.

[Jersey Girl]

Have any of you had laproscopic hernia repair surgery? If so, how was your recovery? If so, was it worth it to you in resolving whatever symptoms you had?

I don't need to know about your symptoms unless you feel you want to say. I am most interested in recovery and outcomes from surgery. Years ago, I had gall bladder removal and I assume the recovery is something like that. I don't mind the idea of recovery or even more weight loss in the process (I've read about the post op dietary needs) if it will help me recover from these disturbing symptoms in the long term.

Laparoscopic gall bladder removal is not difficult to recover from, and not really very painful, although since there is some damage to the liver as the gall bladder is removed you will have a week or so of dark urine as your white cells clear up the dead tissue and dump the residue in the blood for the kidneys to filter out into the urine.

The Laparoscopic repair of an inguinal hernia is a three-hole job just like the gall bladder removal, and (according to a surgeon) it is likely to be a quicker recovery than gall bladder removal because it just involves blocking the gap in the abdominal muscle wall with a piece of special gauze.

The website I have consulted says of hiatus hernia treatment by laparoscopy:

After surgery, it usually takes:

2 to 3 days to go home
3 to 6 weeks to go back to work
6 weeks before you can eat what you want
a few months to recover from side effects like bloating, burping, farting and difficulty swallowing
There's a small risk (about 1 in 100) that your side effects will not go away and you'll need more surgery.

But as you will see, surgery need not be the first resort in this case.

Hope this helps.

Thanks, Chap. I've read about the surgery and was kind of hopeful that someone might have firsthand experience with the recovery. From your link, here are the options short of surgery. I will bold what I've already done (what is applicable to me) so you can see where I'm at and why I've got an appointment in the works as a next step.

Broadly, treatment follows these steps:

Change your eating habits, for example, eat smaller, more frequent meals and do other things to help with the symptoms of GORD.

If you smoke, try to give up, as it can irritate your digestive system and make your symptoms worse.

Buy medicines from the pharmacy (ask the pharmacist what you should take to help with the symptoms of GORD).

If medicines from the pharmacy and changing your eating habits do not help, see a GP, who can prescribe stronger medicines. **I went from using simple antacid tablets (like TUMS) to being prescribed famotodine which is a.k.a. Pepcid here in the US. There could be a stronger aid that I could use as a next step. I refuse what are called PPI's because they are associated with fairly rapid bone loss. I'm at an age where I don't want to risk that possibility.

I am here:
v
v
v

If stronger medicines do not work, a GP can send you for further tests to find out if your symptoms are caused by a hiatus hernia. They might also prescribe medicines for long-term GORD.

A GP might refer you to a specialist to check if you need surgery. This usually only happens if other treatments have not worked and you keep having very bad symptoms.

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So I know what the tests are and I see that as my next step.

Chap...I have to tell you this. I owe a debt of gratitude to the UK researchers for my success in identifying the type of AFIB that I get. Vagally mediated AFIB like I have is NOT recognized in the US because it hasn't been researched, though I did find ONE paper on it at the NIH website a year or so ago. Just. one. paper.

So at one point in this miserable journey, I got fed up with being on the Beta Blocker I was given because with an increase in frequency of dosage---afib also increased going from once a month, to about once a week. And at that time, I already knew what type of afib I had and that Beta Blockers are contraindicated for it because they exacerbate the problem and I was living proof of that. I ended up seeing an electrophysiologist who is also a cardiologist. He nailed the diagnosis in 5 minutes of me telling me about my history. How could he do that?

He was educated in the UK.

Got me off the medication and 6-8 weeks of withdrawals, the episodes went right down to 1-2 times a year. Because I ate stupid.

Returned to one of my cardio providers who thanked me for sending him the NIH paper and during our discussion he explained the difference between NHS and NIH methods of pursuing research and how it's related to the difference in how we fund research.

So thankful for the NHS!!!

[Jersey Girl]

Have any of you had laproscopic hernia repair surgery? If so, how was your recovery? If so, was it worth it to you in resolving whatever symptoms you had?

Has your doctor diagnosed you with a hiatal hernia? If so, are they recommending this surgery?

No, Marcus. I'm putting the cart before the horse as I said in the OP. I've got an appointment with my primary on Sep 11th. I am sure I'll be sent for testing following that.

[Jersey Girl]

I have many of the symptoms of hiatal hernia. Not all of them.

How do those symptoms compare with acid reflux?

Gad they kind of symptomatically overlap. Acid reflux is a symptom of hiatal hernia. Both are associated with the type of AFIB I get. I am sure I have acid reflux but I am not aware of it until I am in AFIB/RVR where I have a red hot poker burning in the chest. I don't know exactly why I would get acid reflux because I eat so healthy, am physically active, and have never been horribly obsese. I know that 93 pounds probably sounds unimaginable to you, but it's a "normal" weight for me because I am small to start with.

The very first episode of AFIB I got I immediately suspected reflux. The Boy was in town and I called him in complete pain/horror and asked him where his Nexium was. I instinctively knew my espophagus was burned and felt on fire as if I had swallowed something corrosive. Then it occured to me that I could possibly be having a heart attack and called EMS...and learned I was in AFIB/RVR. That was the beginning of all of this.

Both acid reflux and hiatal hernia can act on the vagus nerve which is the bain of my existence. The vagus nerve interacts with all your organs from the base of your neck to your tail bone. The vagus nerve is the major player in this story.

Anyway, I started using tablets like TUMS, now I take Famotidine (Pepcid) twice a day. I'm allowed to combine those if I feel I need to. I can't think of much of anything that I eat that should cause reflux. If I do have reflux, my sense is also that if I eat too much (which I eat small portions to start with) or too close together, that is part of it. That is why I feel like something more is happening and I need to discover what it is.

[Jersey Girl]

So today is one of my good days. A good day is when I've slept soundly through the night (or morning as the case may be since I was up until the wee hours), have normal energy, and I can't feel my heart beating. This is the very best type of day that I ever have even though my sleep cycle is turned upside down. The problem is that it can spiral into misery but usually I'll be fine throughout a day like this.

Thank you all for the replies so far. I don't forget the times when I reached out here that some of you caught my hand in response. I was sinking into the depths last night. You helped me come back up today!

Carpe diem