Help wanted (Score so far related)

[msnobody]

I went back and read from the opening post page. I didn’t realize that you posted much of the problem in the opening post, but it’s right there. I guess I had just forgotten. It is ashamed that you were wanting scoping procedures in August and it will come to fruition in January. Seems like a long wait time.

It's been about 5 months wait time. One good thing* about the long wait is that I've had ample time to knock myself out thinking over every single outcome scenario under the sun to finally reach the point of accepting that it's out of my hands. It's in His hands. And so am I.

Recap:

1. Full adult blood panel (normal)
2. CT scan (nothing of concern)

The scopes is mid-Jan.

*I always find the "one good thing".

As someone’s username once read, “Strikingly human.”

[Jersey Girl]

It's been about 5 months wait time. One good thing* about the long wait is that I've had ample time to knock myself out thinking over every single outcome scenario under the sun to finally reach the point of accepting that it's out of my hands. It's in His hands. And so am I.

Recap:

1. Full adult blood panel (normal)
2. CT scan (nothing of concern)

The scopes is mid-Jan.

*I always find the "one good thing".

As someone’s username once read, “Strikingly human.”

Incredibly and utterly human.

[Jersey Girl]

Update. Check it out! I'm going bare bones truth here. Show you just how bad everything got. PLEASE read through this. It's important to me if you have the time that you read through the whole entire thing.

Last week I was NUTS. I went into Afib/RVR and couldn't get myself back into NSR so off to the ER. Everything went fine and I had such a nice and thoughtful nurse. One of those rare professionals who knows how to employ after entire skillset including thoughtfulness toward the patient. Example: The last time I went the nurse felt like she was trying to shove me out the door. I'll just leave it at that because if I do details it makes me angry. So all went well.

TWO DAYS later...my heart tripped out again at home. I got myself back into NSR in 45 minutes. Thank goodness because the ER folks (depending on staffing) recognize me and I feel like a total freak.

Just a note: I'm sick and tired of explaining my situation to the ER folks. They do NOT know what I am talking about when I talk about gastric/cardiac syndrome (Look up freaking Roemheld Syndrome which I found within the first year of having episodes.) Is there any intellectual curiosity in the U.S. medical community? I end up telling them the reason it's not well understood in the US is because the competition for research dollars is so fierce in the US but not in the UK on account of the different health care systems and the way they are funded. What am I? Their professor now? I get SO sick of it all.

If you are reading this post, search on that syndrome and WATCH the hits that come up from the UK. When you get to Dr. Sanjay Gupta...HE'S MY GO-TO GUY who basically saved my sanity and gave me the tools to advocate for myself.

Okay back to the update.

So I was NUTS. I mean anxiety through the roof for the past week. Christmas Day we had family come and they must've thought I was on speed. Like hyper. Like racing thoughts. Like totally nuts. Like off the charts anxiety. Like wound up tighter than a school house clock. Like pinging off the walls on the verge of hyperventilating stomach spasming level N.U.T.S.

Here comes the good part...last night I was searching for a guided meditation to use on youtube. I've done them before as part of yoga practice. I tried 2 but I couldn't concentrate because some of the guidance is so bloody vague you have to insert your own situation into it and nothing fit. So I go on to vagus nerve stuff. I've done four types of exercises to stimulate the vagus nerve and they DO work. That's what you want. You want your vagus nerve to KICK IN and do what it's supposed to do in your nervous system and not sit there and slack off because when it slacks off that's what messes you up...remember vagus nerve is the mission control pilot for:

Respiratory
Heart
Stomach

See me there? Yeah, so I found something new. It involved sort of slapping your stomach around and man handling your navel area. I figured hey, if my stomach is going to give me fits why not give it a good beating...it's beating ME up isn't it?

Here it is:

Vagus Nerve Activation | 10 Minute Daily Routines
https://www.youtube.com/watch?v=zUx5kLF ... 9G&index=2

Before I got to the end of this practice, about half way through, EVERY PART OF MY BODY RELAXED. I have NOT experienced this in well over a year. Probably much longer than that. Why? Because the sniper on the roof that is Afib/RVR is always ready to start shooting and It's ALWAYS in the back of my mind playing like a reel on repeat. Is that a palpitation? Should I eat that? What should I eat? Should I eat before we go to the restaurant? Will I mess up the meal/holiday/special occasion and have to leave? Should I take a antacid? What about an enzyme? Does that have dairy? Should I try a lactase tablet? Should I get up and move around? Stay still? What if I have to go to the ER? It's snowing what if I have to call EMT? What if...what if...what if...WHAT. FREAKING. IF.

By the time I got to the end of the 10 minute practice I was SO RELAXED I was YAWNING. I can't remember the last time I was so comfortably tired and relaxed that I actually YAWNED.

Do you yawn when you're tired? I don't. I stay wake most of the night and ruminate...should I try to sleep sitting up? What if I lay down now? What side should I lay on? This goes on until the wee hours. I've gone to sleep at 7 a.m. when I've finally exhausted myself.

I'm not joking here.

So I was relaxed and yawing. Stretching from head to toe, relaxed, and yawning. About ready to fall asleep and I did.

I SLEPT LIKE A BABY LAST NIGHT and... I WOKE UP FEELING LIKE ME.

Clarity.
Focus.
Energy.
Strength.
Enthusiasm.

Not even a hint of anxiety.
Not one little peep out of my heart...ALL DAY LONG.



Have I found a way to whip my actual vagus nerve back into service? I won't know until I do this for an extended period of time. All I DO know is that it WORKED.

Something worked! Something finally freaking worked!!

I finally found this post/rant I made...

That video up there ^^^^^ I've been doing that 10 minute vagus activation thing every single day(a week) since I posted about it.

I've been sleeping like a baby every single night since I started doing it .

About 3/4 of the way through or in the last 1/4 I continue to start yawning every time I do it.
And I haven't felt anxious for a single second.
No signs whatsoever of heart palpitations or arrhythmia.

None. Nada. Nothing. Zero. Zilch.

I haven't felt like this in at least a year. If I'm to be perfectly honest, probably longer.

All of the stuff I reported about clarity, focus, energy, etc. It's all the same. I feel like ME again.

I think that the pinging off the walls I reported on C'mas day was because my parasympathetic nervous system was completely unresponsive. I'm right back at the beginning of my journey where I pinpointed a faulty vagus nerve as the main issue. In that video I heard her explain something that I've never heard before.

When I got into vagal maneuvers and looking for ways to act on the vagus nerve, at first it was the valsalva maneuver. Then I added on other things like drinking cold water during an episode or other breathing techniques. When I searched up more techniques on youtube they were always the same thing...breathing techniques, ear stretching (sounds weird but it's a thing), learning to vibrate the vocal chords, In other words it always involved locations from the chest to the neck/head area. You can put your head in ice water but I've never done that. I did use ice packs one time and they didn't help stop an episode.

What's different about the new video is that she explains how the vagus nerve starts at the base of your spine, goes down your body and then it spreads out like a net. Her deal was to explain that there is no good place on your body to access the nerve until you travel down to your abdomen where it's uh...soft, your belly.

She also mentions (as I have many times) that if your vagus nerve is messed up it can mess with your gut and cause digestive problems. See what I mean?

I don't know if this is a magic bullet or anything. All I know is that it's worked for a solid week and I feel better. And I'm eating without fear or any sort of malfunction regarding digestion. NONE.

So today I'm going to say that the whole mess during April and ongoing has something to do with my vagus nerve sort of crashing entirely. For what reason I don't know. That's my working theory.

All I know is that I'm better and eating. Going to keep eating and enjoying it, and weigh once a week. I even look better than I have in months. Probably the good sleep.

I'm planning to do my pre-registration for the Jan 16 procedures tomorrow. On with it, I say!

Oh and that last episode of afib that I self cardioverted...I drank ice cold water throughout the ordeal and did the valsalva maneuver differently that time. When I held my breath, I didn't "bear down". Instead I contracted my abdominal muscles. Coincidence? I have no idea.

If anyone is still reading here...thank you so much! I was totally out of my mind and down on my knees when I started this thread out of sheer desperation. I don't know. Maybe putting my stuff here and journaling how I work through things might encourage someone else to persevere and not give up hope. I don't know why I always think I can be okay but I do. Anyway, do not lose hope!

Thanks again and I'll keep writing.

[Jersey Girl]

My BMI at this writing.

Your BMI is 21.6, indicating your weight is in the Healthy Weight category for adults of your height.

Thought I'd throw that in.

[Dr. Shades]

My BMI at this writing.

. . . is what?

Your BMI is 21.6, indicating your weight is in the Healthy Weight category for adults of your height.

How the Hell can you possibly know my BMI?

Thought I'd throw that in.

Umm, . . . thanks?

[Jersey Girl]

My BMI at this writing.

. . . is what?

Your BMI is 21.6, indicating your weight is in the Healthy Weight category for adults of your height.

How the Hell can you possibly know my BMI?

Thought I'd throw that in.

Umm, . . . thanks?

What are you suffering from? Do you need to start a thread of your own here?

[Imwashingmypirate]

What are you suffering from? Do you need to start a thread of your own here?

That's a fine BMI. But are you happy with that BMI. I thought I was overweight when my BMI was 25. Now I wish that was my BMI lol.

[Jersey Girl]

That's a fine BMI. But are you happy with that BMI. I thought I was overweight when my BMI was 25. Now I wish that was my BMI lol.

Yes it's a perfectly normal BMI but I would like to gain 10 pounds back.

[Jersey Girl]

So...back on the horse here. Tomorrow begins my preparation for the upcoming scopes procedures with regard to modifying what foods I eat. I have three days of soft/low fiber/mushy diet prior to the preparation stuff and I go in on Tuesday. Did a nice little grocery pick up this evening to get all the foods I need and it looks pretty good! Picking up a few extra practical needs tomorrow.

When I did my pre-registration at the stand alone clinic on the hospital campus it was confirmed that I'm being admitted to the hospital just like I wanted and needed. I'm so grateful for this!

Everything is done except for one portal message I need to send.

My worst thing is thinking about being exhausted when I go in.

My best thing is thinking that I'm doing a good job of soldiering my way through all this having waited 6 months for the procedures to actually happen even though I get scared about the results. I remind myself that I overall feel good now and pray. I'm human and it's natural to be scared as to the outcome. I'm learning to give myself the same encouragement I'd give to someone else.

That vagus nerve activation practice I posted about? I've been doing it every day for over 2 weeks now. All I can say is that it WORKS. I can hardly believe that I found something that actually works. I'm still stunned by the results every time I do it.

I stopped weighing myself. I don't think I've gained any more weight so I'd say maybe I'm at 94 pounds? It fluctuates and I just got tired of doing it even once a week. It's pretty useless especially when dehydration is so common at this altitude. I'm drinking lots of water, eating three meals and snacking on decent food supplemented by total junk food.

[Jersey Girl]

Day before procedure...liquid diet and later the preparation part. Tomorrow is the procedure.

I'm all set. Got all my questions answered and after waiting 6 months, I'm so glad it's finally getting done.

Putting a few things here in case it could help someone else with an idea especially with medication workarounds. The instructions are super easy to understand with a chart on the side that tells you what and when to start or stop something. That includes both medications and preparation. There's a separate set of instructions for folks with diabetes.

I've got Suflave which is a two step brand new product. Supposed to be a really good performer in clinical trials for it's taste and outcomes such as reduction in tummy issues. We'll see if it lives up to it's claims. If I do a review, I promise I won't do gory details!

So what I've got gathered for today.

Clear liquids:

• Tea, Sweetner/sugar, no milk
• Chicken stock and bone broth
• Pedialyte packets, Apple only
• Water

Meds Permissions:

• I had to stop the anticoagulant I take for Afib (to protect against stroke) I have permission to take 1 low dose baby aspirin today
• Permission to take acetaminophen (paracetamol-UK) if I get a dehydration headache
• Permission to take simethicone if I get too much bloating--triggers Afib

preparation self-care for the bathroom:

• Alexa
• Fairly lights on the mirror and LED flickering candles
• Tilted lap top stand for computer and dozing off
• Pink basket of various hygiene products

If I'm going to hang out there, it's gotta be nice.

The procedures all total should only be 45 minutes under the sedation so I feel pretty confident that all will go well. I look forward to the propofol and a warming blanket!

My doc is a BYU grad,

Jersey