Help wanted (Score so far related)

[Jersey Girl]

Oatmilk is yum! I got the kind that apparently Starbucks uses. Oatly or something like that? Made a cuppa right away when I got home and put it in. Liking it!

[Imwashingmypirate]

My kids had testing.

So, if you are having blood tests done, you actually need to eat the suspects so that your blood work shows up antibodies for the suspects... But probably best to discuss that with your health professional.

Phoebe had CMPA. Her bloods and skin testing showed as normal but only on removing the dairy did her symptoms improve. There are iGE and non IGE allergies. Non IGE are hard to work out and can be done by elimination.

When Phoebe was a baby, her tummy was like a balloon, she had purple streaks on her tummy, she was sick, reflux, screaming, mucus poo. For months I was told it's colic, reflux, I asked if it could be milk related and they said no because I was breast feeding. Eventually I was so desperate that I decided to go dairy free. Within a week my baby was smiling for the first time. She stopped screaming. Her tummy deflated and she didn't have diarrhoea anymore. She was a totally different kid. It is still evident that milk causes issues but we worked up the milk ladder. Oli had similar symptoms but we kept him going with gaviscon. Didn't realise he has dairy issues til we realised Phoebe did and then saw the similarities.

I have allergy symptoms. I am waiting for metal testing. I have "spontaneous and induced urticaria and erythema". I react to latex, banana, kiwi, milk, (I think gluten), garlic, msg, (I think sugar), some spices. My total iGE is zero. Which apparently means I might be allergic but my body isn't producing allergy antibodies. I do have other antibodies. I also have eosinophilic oesophagitis which is caused by eating something I'm allergic to. So even if testing shows no allergy, you could still have allergies. When I did the skim prick test they were all negative even though they initially started reacting for mould and wheat but then the reaction at the prick disappeared and my entire body was itchy on fire, I had red patches appear in random places, I had a red line where the tape was, I reacted to the plastic pillow my arm was resting on. Basically everywhere but the test sites started reacting. The latex glove test was recorded as positive but was inconclusive because I had patches of red rather than my full hands becoming red. Lol.

[Jersey Girl]

My kids had testing.

So, if you are having blood tests done, you actually need to eat the suspects so that your blood work shows up antibodies for the suspects... But probably best to discuss that with your health professional.

Phoebe had CMPA. Her bloods and skin testing showed as normal but only on removing the dairy did her symptoms improve. There are iGE and non IGE allergies. Non IGE are hard to work out and can be done by elimination.

When Phoebe was a baby, her tummy was like a balloon, she had purple streaks on her tummy, she was sick, reflux, screaming, mucus poo. For months I was told it's colic, reflux, I asked if it could be milk related and they said no because I was breast feeding. Eventually I was so desperate that I decided to go dairy free. Within a week my baby was smiling for the first time. She stopped screaming. Her tummy deflated and she didn't have diarrhoea anymore. She was a totally different kid. It is still evident that milk causes issues but we worked up the milk ladder. Oli had similar symptoms but we kept him going with gaviscon. Didn't realise he has dairy issues til we realised Phoebe did and then saw the similarities.

I have allergy symptoms. I am waiting for metal testing. I have "spontaneous and induced urticaria and erythema". I react to latex, banana, kiwi, milk, (I think gluten), garlic, msg, (I think sugar), some spices. My total iGE is zero. Which apparently means I might be allergic but my body isn't producing allergy antibodies. I do have other antibodies. I also have eosinophilic oesophagitis which is caused by eating something I'm allergic to. So even if testing shows no allergy, you could still have allergies. When I did the skim prick test they were all negative even though they initially started reacting for mould and wheat but then the reaction at the prick disappeared and my entire body was itchy on fire, I had red patches appear in random places, I had a red line where the tape was, I reacted to the plastic pillow my arm was resting on. Basically everywhere but the test sites started reacting. The latex glove test was recorded as positive but was inconclusive because I had patches of red rather than my full hands becoming red. Lol.

Holy cats what a journey you've all had! Oh my gosh the breast feeding and Phoebe, and for it to go on and on and on like that! How stressful!

Do you think this stuff has an autoimmune connection?

I actually have an allergy place and I'll check with them. The only testing I've had there was plants and animals. Turned out exactly as I thought it would, too. I'll do the food because I'm sick of this mess now. Done. with. it.

Tonight I got so ticked off. I wanted to eat 2 Walker Shortbread biscuits after dinner. Stomach started bubbling and I said heck with it, and ate 2 more. No more problems after 4 of them.

So huh?

I put more Walker's and low salt chips (crisps) on my grocery list to pick up tomorrow. I just don't freaking care right now. I'm in rebellion. I'm sick of thinking about food all the time and will it mess up my stomach or not. And what food messes it up or am I actually starving because I didn't eat enough and that's what I feel? I need to EAT. I'm going to get a Margherita pizza too from my favorite place to get it. It's pricey but I want it and I can get 2-3 meals out of it, maybe add a salad or veg. If I end up in the ER with my heart off beat and running crazy, at least I won't go there hungry.

Stuff I think messes up my stomach: Lactose, almonds, maybe whey protein and oats.

And right now...I. don't. freaking. care.

I keep asking myself how I got to this point and all I can say is that it was a slow slide into total misery starting in April...starting with brown rice that did the total bicycle pump thing on my stomach. I'm sure it was the brown rice. Never experienced anything like that in my entire life and it'd been a while since I had brown rice. I don't know what happened to me. I only know it happened and it lasted for 6 months over and over and over again. Every day of my life for 6 months.

And a few days after the CT scan it all went away.

It took 3-4 days after the almond fiasco the other day for my stomach to return to normal. Whatever normal is. Don't ask me because I don't know.

All I do know is that I've got a big back of pricey almonds that I've eaten every day of my life for several years that I can't eat any more and I'm DONE.

The best thing that happened was I fit in my wedding dress and got my pic taken!

by the way, I still didn't get my molar crown replaced. I'll probably be entirely toothless before it's all over!

[Imwashingmypirate]

My kids had testing.

So, if you are having blood tests done, you actually need to eat the suspects so that your blood work shows up antibodies for the suspects... But probably best to discuss that with your health professional.

Phoebe had CMPA. Her bloods and skin testing showed as normal but only on removing the dairy did her symptoms improve. There are iGE and non IGE allergies. Non IGE are hard to work out and can be done by elimination.

When Phoebe was a baby, her tummy was like a balloon, she had purple streaks on her tummy, she was sick, reflux, screaming, mucus poo. For months I was told it's colic, reflux, I asked if it could be milk related and they said no because I was breast feeding. Eventually I was so desperate that I decided to go dairy free. Within a week my baby was smiling for the first time. She stopped screaming. Her tummy deflated and she didn't have diarrhoea anymore. She was a totally different kid. It is still evident that milk causes issues but we worked up the milk ladder. Oli had similar symptoms but we kept him going with gaviscon. Didn't realise he has dairy issues til we realised Phoebe did and then saw the similarities.

I have allergy symptoms. I am waiting for metal testing. I have "spontaneous and induced urticaria and erythema". I react to latex, banana, kiwi, milk, (I think gluten), garlic, msg, (I think sugar), some spices. My total iGE is zero. Which apparently means I might be allergic but my body isn't producing allergy antibodies. I do have other antibodies. I also have eosinophilic oesophagitis which is caused by eating something I'm allergic to. So even if testing shows no allergy, you could still have allergies. When I did the skim prick test they were all negative even though they initially started reacting for mould and wheat but then the reaction at the prick disappeared and my entire body was itchy on fire, I had red patches appear in random places, I had a red line where the tape was, I reacted to the plastic pillow my arm was resting on. Basically everywhere but the test sites started reacting. The latex glove test was recorded as positive but was inconclusive because I had patches of red rather than my full hands becoming red. Lol.

Holy cats what a journey you've all had! Oh my gosh the breast feeding and Phoebe, and for it to go on and on and on like that! How stressful!

Do you think this stuff has an autoimmune connection?

I actually have an allergy place and I'll check with them. The only testing I've had there was plants and animals. Turned out exactly as I thought it would, too. I'll do the food because I'm sick of this mess now. Done. with. it.

Tonight I got so ticked off. I wanted to eat 2 Walker Shortbread biscuits after dinner. Stomach started bubbling and I said heck with it, and ate 2 more. No more problems after 4 of them.

So huh?

I put more Walker's and low salt chips (crisps) on my grocery list to pick up tomorrow. I just don't freaking care right now. I'm in rebellion. I'm sick of thinking about food all the time and will it mess up my stomach or not. And what food messes it up or am I actually starving because I didn't eat enough and that's what I feel? I need to EAT. I'm going to get a Margherita pizza too from my favorite place to get it. It's pricey but I want it and I can get 2-3 meals out of it, maybe add a salad or veg. If I end up in the ER with my heart off beat and running crazy, at least I won't go there hungry.

Stuff I think messes up my stomach: Lactose, almonds, maybe whey protein and oats.

And right now...I. don't. freaking. care.

I keep asking myself how I got to this point and all I can say is that it was a slow slide into total misery starting in April...starting with brown rice that did the total bicycle pump thing on my stomach. I'm sure it was the brown rice. Never experienced anything like that in my entire life and it'd been a while since I had brown rice. I don't know what happened to me. I only know it happened and it lasted for 6 months over and over and over again. Every day of my life for 6 months.

And a few days after the CT scan it all went away.

It took 3-4 days after the almond fiasco the other day for my stomach to return to normal. Whatever normal is. Don't ask me because I don't know.

All I do know is that I've got a big back of pricey almonds that I've eaten every day of my life for several years that I can't eat any more and I'm DONE.

The best thing that happened was I fit in my wedding dress and got my pic taken!

by the way, I still didn't get my molar crown replaced. I'll probably be entirely toothless before it's all over!

Awww...

Sending love.

Do you take any antihistamines? I have fexofenadine which helps with the itchiness.

I think the allergy stuff might cause the autoimmune stuff. And immune system might cause allergies. Like a double edged sword. There's definitely a relationship. I believe the things I have going on might relate to ehlers danlos syndrome. Which seems to involve a lot of autoimmune issues and allergy type issues.

Low fodmap diet cleared up my psoriasis and reduced bloating and swelling.

But it also made me feel low because like you describe, the constant worry of food and constantly not feeling satisfied with food and the drop in sugar just gets to you.
And I gave up. My psoriasis and swelling came back. It's hard to fight the urge to eat what we know isn't good because we crave it and I suspect you have a bit up a screw you food feeling going on.

Did your CT involve any medication?

Celtic salt is supposed to be good for us. I have hydration tablets for the dysautonomia (palpitations/dizziness) which serve to increase heart rate. I have shotted a spoonful of salt before when I felt like I was going to pass out. It worked.

You looked stunning in your dress. Do you have any goals or plans you can focus on? Is there anything similar to almonds that you can eat? Is it the nut or the oil or both? Would putting artificial almond flavour on a different type of nut satisfy that nomminess?

Thank you for your beautiful reply to my post. I feel a little better. Not so low. Not crying now lol

Your words might also be helpful for you to hear. You are a hell of a strong woman. You'll get through this and you are beginning to understand what's going on with your body so you will find more clues about what will work for you. I get the feeling worrying about food might make it worse. I know when I worry about my health my symptoms get worse. What happened in April? Is April significant?

Did the CT reassure you so your symptoms improved? Did you change something around that time?

Might be worth trying a strong antihistamine. Do you take any PPIs? I should be but get all worried about medication


Are you having tummy spasms that are affecting your heart?

Hope you can relax and have a nice evening and I hope you enjoy the pizza and it isn't too trying on your system. Takeaway pizza does us multiple meals too. I made a jacket potato tonight.

[Jersey Girl]

I just had the craziest thing happen today!

So I went to my rug hooking group and stayed after chatting with the host and got on the topic of medical stuff and my heart rhythm disorder and how it's triggered by digestion and then....she rattles off a list of symptoms that she had until she figured out SOMETHING and her symptoms were EXACTLY like mine and I think we may have cracked the code on something or at least one part of my issues and it's pretty simple.

I am missing part of my digestive system.

She and I both had our gallbladders removed over 20 years ago. She went through a couple of doctors, tests, making food trade offs like I have for years until this one doctor raised the issue of gallbladder removal and how you might not have any symptoms at all at first but you could have symptoms YEARS later as you age.

And I think I have just seen the light on at least one problem and on a related issue...she said that the problem with the almonds might not have been the almonds...it could be the caffeine in the chocolate part that messed up my digestion. And how she had to give up chocolate and COFFEE and suggested that I should try giving up tea which I have been drinking almost since the day I was born and I said how could it be THAT??

And she said...

What's the one thing you haven't given up?
What's the one thing THAT'S BEEN THERE THE WHOLE TIME?



That discussion was better than any doctor's appointment I ever had and MIND BLOWN.

And now I have some reflection I need to do. I've been drinking tea forever and ever. I think instead of stopping it right away, I'm going to phase in herbal teas as I phase out the regular tea and...see what happens.

Welcome to another chapter in the continuing saga of "I am my own science experiment."

Pirate I will answer your post soon!

[Imwashingmypirate]

I hope it helps. That's exciting that you've got a possible answer to some of the things going on. Don't worry about responding. I don't remember what I wrote lol.

[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!!

[Jersey Girl]

Folks like I said this thread is a journal for me. Before I go to a doctor's visit it helps me to look a back at an easy form of documentation.

But I think I want to say this. If something is screwing up your life and you keep trying to get it resolved with barely any results or improvement. If you feel like you are always hitting a brick wall. If you feel like no one gets it. If you feel like you are going out of your flipping mind. If you feel reluctant to tell people just how bad it's really getting in your head. If you feel like something is stealing your life.

Do NOT give up hope. And do NOT give up trying.

MAKE yourself keep going at it.

Just go at it and KEEP at it.

[Imwashingmypirate]

Gosh. That sounds like a complete and utter rollercoaster ride. My nervous system was off just reading this but that is so exciting that you found like a secret button to help you relax. Would you mind sharing the video that helped with this? I find it nigh on impossible to relax. Even right now I'm laying in bed but my leg muscles are rigid.

Have you managed to do anything for yourself these past few weeks?

Xx

Edit: you did add the video. My brain blanked that. Sorry. I did read everything. It's just I skipped over the blue text.

I'll have a watch.

[msnobody]

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!!

You’ve got me wondering if the activity involves something with 1.25 or 1.5 in the equation. Before my mind begins to wander too far out, I’ll watch the video.