Anesthesia for heart issue(palpitation, tachycardia, pots, etc)

[kisekishiawase]

Thanks for explaining and I understand now.



Are the apnea episodes when you are sleeping or also when you are awake? Have you had a sleep study (if they are happening when you sleep, they might be able to capture what is going on).



I don't any more and my allergic reactions and anaphylaxis to food went into remission at the end of 2016 from IVIG and my other mast cell treatments. But for about 1.5 years prior to the remission, I had severe histamine reactions from food. The only thing that I continue to avoid are food dyes and contrast dye (b/c it was my most severe reaction and not worth the risk).



I am not familiar with "regional anesthesia". Is it more of a nerve block like an epidural? Usually local anesthesia (in the US) is for dental or dermatology procedures where they only need to numb a small area (although Sushi had it for a major procedure so there are definitely exceptions)!



I am so curious if your breathing weakness is like what I experienced for about four years (prior to it going into remission from IVIG & Rituximab). Can you remind me if you have had any pulmonary testing (spirometry or PFT)? I had a pulmonary restriction and my lungs were not able to inhale a normal breath due to neuromuscular weakness which also affected my diaphragm. (I also had POTS which made it all worse but was a separate issue).

mostly when i asleep many times but randomly.
but i notice i sometimes hold my breath even when awake/if i focus on something. My teacher used to say that to me too. I dont know if it means something?

I have 1 sleep study but i didnt sleep/hard to sleep cause its not comfortable and im nervous.

i see it seems the ivig is really a success for treating heart issue and mcas? And autoimmune?
When you say food dye does it mean you cant take ice cream/food with coloring? And what about iv contrast?

Yes i thought its the nerve block different than local.

So you the breathing issue got better due to ivig too?
I just remember when you say spirometry. Therea 3 test of it and the second test it shows some obstruction. But the doctor said it may only an error due to me not perform it right. Although i felt fine during the test. But i notice from back then i couldnt expand my breath fully and people say it too(from test and teacher)And when i went to hyperbaric therapy i couldnt breathe. Also when swimming. Feels so heavy.

Untill now i still dont know whats the problem.

Anyway i wanna thank you and @Sushi and the other who reply here for all the inputs because you guys have more experience and knowledge.

 

[kisekishiawase]

P.S. My electrophysiologist might know if there is a cardiologist who treats POTS in Singapore or Malaysia as she is from that area, but she wouldn’t know of ME/CFS specialists as she does not have connections in the ME/CFS world.

I just read this.
I see.. its great if she would know if theres a specialist who treat pots in singapore/malaysia?anyway it seems cfs still unknown in singapore too it seems?
I dont know how to find.

I actually still confused what i have since i have this many symptoms but its still a mystery which im alone have to be the detective
I wonder where/who should i ask(besides the doctor here). I even think about crowdmed website. But i dont really know about it.

Yes, that is what it is for. My question is why are they considering surgery for and ASD/PFO? Do they have some evidence that it is causing problems?

For abdominal surgery I would think that you would need to be unconscious. Just make sure that your anesthesiologist understands your problems. I had no problems with any of the times I’ve been under anesthesia but my anesthesiologist and I spoke beforehand and they always understood my problems and took them seriously. For me, it just meant that I was groggy for a few days afterwards.

It just 1 electrophysiologist referred me to TEE.(but 1 other electrophysiologist said no, so im confused) My symptoms is heart palpitation(mostly heart thumping so hard out of chest(even when under 110bpm), exercise intolerance, heart acting out from minimal exertion, increase 30-40bpm standing, food, tired/lack sleep, episode when sleeping, morning, etc&extrasystoles/pac/pvcs, tachycardia(i recorded 170bpm supine when i got attack). doctor said pattern is ok but its fast dont know whats the cause.

For the asd he said the asd usually dont really have symptoms so im confused. And i just let it go.

 

[Sushi]

I see.. its great if she would know if theres a specialist who treat pots in singapore/malaysia?

Do you want me to ask her? In other words, would you be willing to travel there if there were a doctor who treated POTS?

It just 1 electrophysiologist referred me to TEE.(but 1 other electrophysiologist said no, so im confused) My symptoms is heart palpitation(mostly heart thumping so hard out of chest(even when under 110bpm), exercise intolerance, heart acting out from minimal exertion, increase 30-40bpm standing, food, tired/lack sleep, episode when sleeping, morning, etc&extrasystoles/pac/pvcs, tachycardia(i recorded 170bpm supine when i got attack). doctor said pattern is ok but its fast dont know whats the cause.

Usually they do a TEE only if a transthoracic echocardiogram doesn’t show something clearly. It is not a routine screening test and also involves sedation.

For the asd he said the asd usually dont really have symptoms so im confused. And i just let it go.

From what I have read, PFOs don’t usually have symptoms or create problems unless they are large.

 

[kisekishiawase]

Do you want me to ask her? In other words, would you be willing to travel there if there were a doctor who treated POTS?
Usually they do a TEE only if a transthoracic echocardiogram doesn’t show something clearly. It is not a routine screening test and also involves sedation.
From what I have read, PFOs don’t usually have symptoms or create problems unless they are large.

Yes and thank you. i have been trying to find if theres a specialist there who can help me identified the culprit of my issues

Yes he said the 2d echo isnt really clear only 1 side.

 

[Sushi]

Yes and thank you. i have been trying to find if theres a specialist there who can help me identified the culprit of my issues

Yes he said the 2d echo isnt really clear only 1 side.

I see her next week but I would only ask her if you are sure that you would be willing to travel there as she is very busy with emergencies and she would have to spend some time looking it up.

The usual thing if the echo isn’t clear would be to do another transthoracic echocardiogram. A TEE is invasive and expensive, and involves IV sedation. You have a very sore throat afterward!

 

[Gingergrrl]

I have 1 sleep study but i didnt sleep/hard to sleep cause its not comfortable and im nervous.

I had a sleep study in 2013 when I first got ill but it was useless like yours b/c I really never fell asleep. They also had me take the beta blocker during the study which masked some of the tachycardia. Mine was very poorly conducted overall.

i see it seems the ivig is really a success for treating heart issue and mcas? And autoimmune?

The IVIG and Rituximab were a huge success for me but I always have to put a disclaimer that it was really tailored to my specific situation and autoantibodies.

When you say food dye does it mean you cant take ice cream/food with coloring? And what about iv contrast?

I am allergic to FD&C food dyes and the one that caused me anaphylaxis was Yellow #5 (Tartrazine). It is often in butter and I have to see the labels of certain products or I cannot eat them. I am also allergic to contrast dyes.

Yes i thought its the nerve block different than local.

A nerve block is different than a local anesthesia. Do you know which one they wanted you to have?

So you the breathing issue got better due to ivig too?

The breathing issue (that was due to muscle weakness) 100% resolved from IVIG & Rituximab. I am hoping and praying that it never returns b/c it was torture and was the reason that I could not walk without a wheelchair.

I just remember when you say spirometry. There 3 test of it and the second test it shows some obstruction. But the doctor said it may only an error due to me not perform it right. Although i felt fine during the test. But i notice from back then i couldnt expand my breath fully and people say it too(from test and teacher)And when i went to hyperbaric therapy i couldnt breathe. Also when swimming. Feels so heavy.

My spirometry tests (prior to treatment) always showed pulmonary restriction (and never obstruction in my case). It was not until much later that we realized it was due to muscle weakness of my lungs & diaphragm from autoimmunity. I had many pulmonologists try to tell me that the results were an error or were due to "poor effort" on my part -- neither of which was remotely true.

i wanna thank you and @Sushi and the other who reply here for all the inputs because you guys have more experience and knowledge.

I have a lot of experience and knowledge re: my own case but I know that it may not apply to others.

Yes and thank you. i have been trying to find if theres a specialist there who can help me identified the culprit of my issues

It would be amazing if Sushi's doctor can refer you to a cardiac/POTS specialist in Singapore or Malaysia and I will pray that this happens for you.

 

[Sushi]

Yes and thank you. i have been trying to find if theres a specialist there who can help me identified the culprit of my issues

My electrophysiologist said that if there is a POTS specialist in that region they would be found at the National Heart Centre in Singapore—one of the top heart hospitals in the world. https://www.nhcs.com.sg/ Good luck!

 

[kisekishiawase]

@Sushi
Hello and thank you for asking your doctor i really appreciate it.
I think i have tried email them before but they said they dont know about POTS specialist. I might have to check that again or ask again.
Hopefully there is.

Sorry again and thank you for both of you that stick with me? @Gingergrrl

Most of the time i want to give up cause i cant find a way but i cant run away so im stuck.

@Gingergrrl
So any food with coloring you take, you get symptoms right away? And its due to mcas? (If i eat food with coloring like cake, icecream, i dont get allergy that means i dont have mcas? Because mcas isnt known here so i cant ask doctor)

Im still curious about the connection of autoimmune&heart. I have read your post that you have pots, heart, autonomic issues but i still have missing puzzle.
May i know more about the heart symptoms? And other symptoms that may related to the beta adrenergic, muscarinic antibody. I read about it but i dont fully understand. Such as, do all symptoms have to happen and constantly.

do your heart issues and pots go nonstop or theres ups and downs? Did it get affected by triggers, avoidance?

Yes hope the issue has resolved and things will go great. Also you finally manage to find the culprits and got treatments. It was really such blessings. hope you finally beat the issue and put it behind in the past.

 

[Sushi]

Hello and thank you for asking your doctor i really appreciate it.
I think i have tried email them before but they said they dont know about POTS specialist. I might have to check that again or ask again.
Hopefully there is.

There is a good chance that it wouldn’t be called POTS in Singapore. You might try asking about autonomic dysfunction that affects heart function. POTS is only one type of autonomic dysfunction (dysautonomia). Many of us (including me) have other types of dysautonomia that affect heart function and many other physiological functions. Though people use the term POTS a lot, your problem could be another type of dysautonomia. Have you done a “poor man’s tilt table test at home? If not, that could tell you a lot.

 

[Gingergrrl]

Sorry again and thank you for both of you that stick with me? @Gingergrrl

No worries and I wish I knew how to get you the help that you need

@Gingergrrl So any food with coloring you take, you get symptoms right away? And its due to mcas? (If i eat food with coloring like cake, icecream, i dont get allergy that means i dont have mcas? Because mcas isnt known here so i cant ask doctor)

I my case, the anaphylaxis started in early 2015 with yellow food dye #5 also known as "Tartrazine". Then the second episode was w/a red food dye. In my case they turned out to be FD&C or Azo Dyes. But everyone with MCAS is completely different and not all are allergic to dyes. Everyone has different triggers and mine were mostly to food and smells. My MCAS has been in remission since end of 2016 but I continue to avoid certain dyes to be safe (including in meds and contrast dyes). If something is colored with a natural dye, this is fine for me and not an issue.

Im still curious about the connection of autoimmune&heart. I have read your post that you have pots, heart, autonomic issues but i still have missing puzzle. May i know more about the heart symptoms? And other symptoms that may related to the beta adrenergic, muscarinic antibody. I read about it but i dont fully understand. Such as, do all symptoms have to happen and constantly.

Autoimmunity turned out to be at the core of my issues but this is not the case for everyone. I had Autoimmune POTS and my doctor believes that all POTS may turn out to be autoimmune but if not, there is definitely a large subset.

But there are of course many heart issues that are not due to Dysautonomia or Autoimmunity. They just were in my own case. I'm not an expert in the autoantibodies but my understanding is that the alpha & beta adrenergic autoantibodies relate to Autoimmune POTS and the Anti-Muscarinic & Cholinergic relate to the muscle weakness and breathing weakness that were my other major problems before I went into remission.

do your heart issues and pots go nonstop or theres ups and downs? Did it get affected by triggers, avoidance?

Do you mean prior to my treatments or now? Prior to treatment, the POTS was intractable and I had only minimal symptom relief from beta blocker and minimal from Midodrine trying to raise my BP. Now it is in remission with the exception that I cannot climb more than about 5-6 stairs without triggering symptoms. We are trying to determine why but it seems to be common both in POTS and the other neuromuscular issues that I had.

Yes hope the issue has resolved and things will go great. Also you finally manage to find the culprits and got treatments. It was really such blessings. hope you finally beat the issue and put it behind in the past.

Thank you so much. I feel like most of it is in remission from treatment yet I say that very humbly knowing that it could all go away at any time and do not take any of it for granted.

 

[manasi12]

@kisekishiawase.. Did electrophysiologist diagnosed you with inappropriate sinus tachycardia ? Some of them may not call it POTS but if you have tachycardia at rest also , they may prescribe ivabradine. At least they offer it here in India. But unfortunately I couldn't tolerate it but it is a very good drug.