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

[kisekishiawase]

Hello..
Excuse me for making new thread.
I have read a thread about anesthesia but it seems not specifically for people who got pots, palpitation, tachycardia.

Im really desperate i always avoid getting drugs cause im sensitive but doctor order me for surgery

Can you please inform your experience on what drug is safe/safer for pots, tachycardia, people?(i got heart issues from 9 years old. Many times got attack in the middle of sleep. Got betablocker but only help at some degree. Also my blood pressure is low so its a dilema)

Doctor here dont know about pots, cfs, etc so im a mystery case

I also got sleep apnea sometimes which isnt get address. And autoimmune.

I really feel desperate.
Whats really sad is people look down on me and no one understands.

Thank you very much for whoever help.

 

[Sushi]

I have read a thread about anesthesia but it seems not specifically for people who got pots, palpitation, tachycardia.

I have had anesthesia several times for heart procedures. Most of us who have had propofol did fine with it. I have also had the combination of versed and fentanyl a number of times with no problems. I recently had a much more complicated anesthesia where many drugs were used. No problems but I had a good consult with the anesthesiologist beforehand to make sure that he understood my issues (he did) and he was very careful to use drugs that were safe for someone with autonomic dysfunction. I don’t have a list of what he used or I’d let you know but he rattled off quite a long list of what he would use. Bottom line: make sure that the anesthesiologist understands the issues.

 

[kisekishiawase]

Thank you for your post. And the drugs that i can list as a recommendation to ask to doctor.

Thats what im confused about propofol, i read the recommendation but many people post here they got bad reaction with it and. Theres even a thread that includes explanation about calcium channel being the issue with it.

Heres one of it
https://forums.phoenixrising.me/thr...on-transport-issues.77258/page-6#post-2230280


Also the issue with nitric oxide, i dont know what alternative to use.
I also read about histamine issue, vasoconstrictor(epinephrine),vasolidator, muscle relaxer, neurology effects. I still cant find a good options.

Also i read about regional anesthesia it seems good. But i read they usually use epinephrine?

I have had anesthesia several times for heart procedures. Most of us who have had propofol did fine with it. I have also had the combination of versed and fentanyl a number of times with no problems. I recently had a much more complicated anesthesia where many drugs were used. No problems but I had a good consult with the anesthesiologist beforehand to make sure that he understood my issues (he did) and he was very careful to use drugs that were safe for someone with autonomic dysfunction. I don’t have a list of what he used or I’d let you know but he rattled off quite a long list of what he would use. Bottom line: make sure that the anesthesiologist understands the issues.

 

[Sushi]

Thats what im confused about propofol, i read the recommendation but many people post here they got bad reaction with it and. Theres even a thread that includes explanation about calcium channel being the issue with it.

Heres one of it
https://forums.phoenixrising.me/thr...on-transport-issues.77258/page-6#post-2230280

Also the issue with nitric oxide, i dont know what alternative to use.
I also read about histamine issue, vasoconstrictor(epinephrine),vasolidator, muscle relaxer, neurology effects. I still cant find a good options.

Also i read about regional anesthesia it seems good. But i read they usually use epinephrine?

This is why you need to have a consult with the anesthesiologist. I raised some of those questions and from the discussion realized that he had taken my circumstances into consideration and knew what he was doing. Note: whenever I get a local I ask for lidocaine without epinephrine—it has always been available.

 

[Gingergrrl]

I have also had the combination of versed and fentanyl a number of times with no problems.

This is what I used for my recent colonoscopy (IV versed and fentanyl plus IV Benadryl in my case) and it worked great and I had absolutely no problems with it.

This is why you need to have a consult with the anesthesiologist.

I 100% agree with Sushi and the only way to know what is best in your personal circumstance is to do a consult with an anesthesiologist.

I avoided propofol b/c it is an L-type calcium channel blocker. It actually might have been okay for me (since I have autoantibodies that block the N-type channels) but to be completely safe, we decided to avoid it, especially b/c we had a completely viable alternative with versed & fentanyl and propofol was not necessary (in my case).

If you are having a cardiac procedure @kisekishiawase, then you might need a general anesthesia with intubation (vs. light sedation like I had for the colonoscopy). Is it possible for you to consult with the anesthesiologist who will be doing your procedure?

I also needed to avoid Epi, anything that was a known trigger of histamine or mast cell degranulation, anything with dyes, and calcium channel blockers. But we are all so different that I doubt anyone else has the exact same issues or restrictions as I do.

 

[kisekishiawase]

This is why you need to have a consult with the anesthesiologist. I raised some of those questions and from the discussion realized that he had taken my circumstances into consideration and knew what he was doing. Note: whenever I get a local I ask for lidocaine without epinephrine—it has always been available.

Hello, thank you for replying.

I see. So whats the cause for people who got bad reaction to propofol? I still couldnt find out

I couldnt consult with anesthesiologist untill time for surgery.
The problem is since they couldnt find cause of my heart&other issues doesnt get addressed. The doctor mostly/usually said im overreacting, doesnt listen to me. (Pots, cfs arent known here)

So far test i took for heart are ekg, 24hours holter, echo(supine)

Do you know if other test could be useful?
Such as ct, mri, etc?


Ive read you said a doctor found ASD which usually hard to find? May i ask how? Did you get surgery for it?
The reason i ask is 1 cardiologist here said he suspect ASD after i got echo but other cardiologist said no. So im kind of confused.

 

[kisekishiawase]

This is what I used for my recent colonoscopy (IV versed and fentanyl plus IV Benadryl in my case) and it worked great and I had absolutely no problems with it.



I 100% agree with Sushi and the only way to know what is best in your personal circumstance is to do a consult with an anesthesiologist.

I avoided propofol b/c it is an L-type calcium channel blocker. It actually might have been okay for me (since I have autoantibodies that block the N-type channels) but to be completely safe, we decided to avoid it, especially b/c we had a completely viable alternative with versed & fentanyl and propofol was not necessary (in my case).

If you are having a cardiac procedure @kisekishiawase, then you might need a general anesthesia with intubation (vs. light sedation like I had for the colonoscopy). Is it possible for you to consult with the anesthesiologist who will be doing your procedure?

I also needed to avoid Epi, anything that was a known trigger of histamine or mast cell degranulation, anything with dyes, and calcium channel blockers. But we are all so different that I doubt anyone else has the exact same issues or restrictions as I do.

Thank you for replying and hello again its been a while.. good to see you around i actually read your thread about the colonoscopy.

Intubation= gas?

i couldnt consult with anesthesiologist untill time for surgery.
The problem that making me worry is, since they couldnt find cause of my heart&other issues doesnt get addressed. The doctor mostly/usually said im overreacting, doesnt listen to me. (Pots, cfs arent known here)

Yes the issue for me is the cause of my heart issue hasnt been known so its confusing what should be avoided.

So far the test ive taken are ekg, holter, echo(supine).
Do you know if other test could be useful?
Such as ct, mri, etc?

Im still feel lost.

 

[Gingergrrl]

Thank you for replying and hello again its been a while.. good to see you around

It’s good to see you, too

Intubation= gas?

Intubation is when a tube is placed down your throat for surgery that requires general anesthesia. I think there are different types of general anesthesia and not just gas. But I am not an expert on this and would need to research further.

I have never been intubated or had general anesthesia and have always had IV sedation in which you are breathing on your own (even if not conscious for the surgery or procedure).

i couldnt consult with anesthesiologist untill time for surgery.

It was very challenging to find an anesthesiologist who would consult w/me in advance but when I met w/the GI doctor (who was going to do my colonoscopy), she arranged for me to do an anesthesiology consult b/c she felt my case was so complex and wanted to do it as safely as possible (the anesthesia not the colonoscopy).

The problem that making me worry is, since they couldnt find cause of my heart&other issues doesnt get addressed.

I am confused, are you having cardiac surgery or something else? You wrote in another post about possible ASD heart defect (a hole in the heart) unless I am misremembering?

So far the test ive taken are ekg, holter, echo(supine). Do you know if other test could be useful? Such as ct, mri, etc?

I think it would depend on the type of cardiac issue. A 24-hour holter monitor is often not long enough to catch an arrhythmia so you might want to wear a monitor for a longer period like a Zio Patch.

If they suspect a hole in the heart, I’d assume they would need other imaging studies (maybe a CT scan or MRI)? Versus if they suspect an autonomic issue, then a tilt table test (or the NASA Lean Test that doesn’t require a tilt table).

Did you ever have any follow up from that autoantibody they found?

 

[kisekishiawase]

It’s good to see you, too



Intubation is when a tube is placed down your throat for surgery that requires general anesthesia. I think there are different types of general anesthesia and not just gas. But I am not an expert on this and would need to research further.

I have never been intubated or had general anesthesia and have always had IV sedation in which you are breathing on your own (even if not conscious for the surgery or procedure).



It was very challenging to find an anesthesiologist who would consult w/me in advance but when I met w/the GI doctor (who was going to do my colonoscopy), she arranged for me to do an anesthesiology consult b/c she felt my case was so complex and wanted to do it as safely as possible (the anesthesia not the colonoscopy).



I am confused, are you having cardiac surgery or something else? You wrote in another post about possible ASD heart defect (a hole in the heart) unless I am misremembering?



I think it would depend on the type of cardiac issue. A 24-hour holter monitor is often not long enough to catch an arrhythmia so you might want to wear a monitor for a longer period like a Zio Patch.

If they suspect a hole in the heart, I’d assume they would need other imaging studies (maybe a CT scan or MRI)? Versus if they suspect an autonomic issue, then a tilt table test (or the NASA Lean Test that doesn’t require a tilt table).

Did you ever have any follow up from that autoantibody they found?

How are you now ? Are you doing well/better now?

Well i got many issues but most of it didnt get addressed. The surgery is from sudden new issue. Endometriosis cyst 8cm+ i want to search other option besides surgery that could help reduce like sclerotherapy, etc but havent found.

Years ago 1 cardiologist suspect ASD from echo but other cardiologists didnt found. So im confused.

The autoimmune is the jo1(order the lab myself from suspicion)got prescribed prednisolone.
But for the antibody connection with palpitation they dont test/find anything.

I see. I guess its different for surgery and colonoscopy. Glad you found a good doctor. I did ask for regional anesthesia(instead of general anesthesia) but 1 obgyn say it would be problematic. So i dont know...

In my place its really hard to find people who understand. But im really far from where pots, cfs community&specialists are. So i try to find information here. But im not so smart so its hard to figure out.

 

[Marylib]

@kisekishiawase

I had surgery to implant a port-a-cath in my chest for saline infusions because of POTS. I was nervous too!

I showed this anesthesiologist the following document. And he seemed to understand. And I was not intubated. I did not want that and he and the surgeon said it was not necessary.

https://drlapp.com/resources/advice-for-pwcs-anticipating-anesthesia-or-surgery/

The surgery went well. I wish I could remember what they gave me, but I woke up in the recovery room and they gave me plenty of IV saline (not through the port at that point) and I did fine. A friend showed up to drive me home. I took pain meds for a day or two, but the best thing was ice.

It was a mixture of things, I think. There was some fentanyl involved. Maybe propofol like for colonoscopies.

 

[Sushi]

Ive read you said a doctor found ASD which usually hard to find? May i ask how? Did you get surgery for it?
The reason i ask is 1 cardiologist here said he suspect ASD after i got echo but other cardiologist said no. So im kind of confused.

A cardiologist thought, from an echo, that I had an ASD, but a later transesophageal echo showed that I didn’t. Most small ASD defects apparently don’t require surgery. The recent valve repair I had requires the interventional cardiologist to actually creat an ASD by punching a hole to insert a MitraClip. It has healed now though. Echo is the usual way to detect an ASD.

i couldnt consult with anesthesiologist untill time for surgery.

So, did you have surgery?

So far the test ive taken are ekg, holter, echo(supine).
Do you know if other test could be useful?
Such as ct, mri, etc?

What tests would be useful depend entirely on what they are looking for—do you know what that is?

 

[Gingergrrl]

How are you now ? Are you doing well/better now?

Thanks for asking and I am doing well (all things considered)!

The autoimmune is the jo1(order the lab myself from suspicion)got prescribed prednisolone. But for the antibody connection with palpitation they dont test/find anything.

Here is a link from Mayo Clinic re: the Jo1 autoantibody in case it is helpful for you (and it does sound relevant to me from what you describe in different threads).

https://neurology.testcatalog.org/show/JO1

I see. I guess its different for surgery and colonoscopy. Glad you found a good doctor. I did ask for regional anesthesia(instead of general anesthesia) but 1 obgyn say it would be problematic. So i dont know...

It is not necessarily different in surgery vs. colonoscopy and there are all types of potential anesthesias that can be used for both (depending on the needs of the individual patient). I am not familiar with "regional anesthesia" but am thinking it might be what is known as IV sedation or "twilight sleep" in the US?

It was a mixture of things, I think. There was some fentanyl involved. Maybe propofol like for colonoscopies.

I had IV Versed, Fentanyl, and Benadryl for my colonoscopy (no propofol whatsoever). Many people do have it done with Propofol but there are definitely other options.

So, did you have surgery?

I was confused about this, too. Did you have another surgery in the past @kisekishiawase and if so, do you know what type of anesthesia you had for that one?

What tests would be useful depend entirely on what they are looking for—do you know what that is?

I agree with Sushi on this and which tests they order depend on what they are looking for. I had severe breathing problems that ultimately turned out to be from muscle weakness of my lungs & diaphragm (a neuromuscular issue due to autoimmunity), in addition to POTS, and then the grand finale of allergic reactions/anaphylaxis from MCAS. I never had an actual cardiac issue per se although it certainly seemed that way for many years prior to finding the right treatments.

 

[Sushi]

are all types of potential anesthesias that can be used for both (depending on the needs of the individual patient). I am not familiar with "regional anesthesia" but am thinking it might be what is known as IV sedation or "twilight sleep" in the US?

I’d guess that this is what we would call a local anesthetic as she mentioned epinephrine (I think she means lidocaine with epinephrine). We know that lidocaine is available without epinephrine and I have had it for a surgical procedure that took over an hour. It felt like a “horse dose” of epinephrine but the doctor wanted me awake to give feedback during the procedure so they didn’t give me anything IV other than a very small dose of versed and fentanyl to “chill me” a bit.

 

[Gingergrrl]

I’d guess that this is what we would call a local anesthetic as she mentioned epinephrine (I think she means lidocaine with epinephrine).

Thx for explaining and I didn't realize @kisekishiawase was talking about local anesthesia! It's usually used for dental and dermatology procedures and I'd thought she was talking about a major cardiac surgery (or removal of ovarian cyst... I'm still not sure)?

You can definitely get lidocaine without Epi like you said and in my case for some future dental work (not scheduled yet but another long-term project ), I will be getting Mepivocaine without Epi (and without dyes in my case). Although if you had an hour long surgery with just local anesthesia, I guess it is used for all kinds of things that I did not realize!

 

[Sushi]

It's usually used for dental and dermatology procedures and I'd thought she was talking about a major cardiac surgery (or removal of ovarian cyst... I'm still not sure)?

Yes it is, so I was surprised that this is what they used for minor cardiac surgery (a pacemaker implantation) but I realized that it made sense as they just had to numb one quadrant of the chest and she needed me awake. I was actually glad that she did’t say something lame like “you’ll just feel a little pinch” as the injection hurt like hell but by the time my brain had figured out that she was injecting me, it was over. Had she warned me, I would have tensed up and made it worse! Perhaps the use of lidocaine depends on how deep the incision is? Mine went into the pectoral muscle and boy did I feel it when the lidocaine wore off.

 

[kisekishiawase]

@Gingergrrl i havent got surgery since i got sick. (Last appendix surgery i was 6 y.o)
I didnt follow up the ASD suspicion cause other doctor said different thing so im confused.

I have apnea too(randomly)CNS, OSA, breathing issues air hunger, tightness, weakness, happened many times before, randomly but it didnt get addressed/analyzed.

I also didnt get test for mcas.(mcas isnt known here)aside from allergy skin test. My blood test shows high allergy. But thats it. doctor says its ok, nothing. Do you get episode from eating histamine food?

(It left me feeling really lost cause many of my issues dont get detected, addressed, now i have to do surgery which put risk to my issues)

I think local anesthesia and regional anesthesia are different? Since local is only for small portion but regional is wider area? I think its more complicated depends on wether the surgery is big or small?

@Sushi I didnt follow up with the TEE i cant decide if i should...?
i also read about bubble echo. Do you know about it?
i read you got heart surgery, so i thought its due to ASD.
Whats that valve surgery? And they used general anesthesia with propofol? Sorry, im still confused cause it seems you talking about different surgery(you also mention pacemaker)

Anyway, do you happened to know if theres pots, cfs, specialist in singaporr or malaysia? Im having hard time to find. Although i dont know if i can travel there cause i have a phobia

@Marylib Thanks for sharing.

 

[Sushi]

now i have to do surgery

What surgery do you need to have?

I think local anesthesia and regional anesthesia are different? Since local is only for small portion but regional is wider area? I think its more complicated depends on wether the surgery is big or small?

I had a local for a large area (about half my chest and upper arm. One of the differences is that with a local, you stay awake whereas with a general you are unconscious.

@Sushi I didnt follow up with the TEE i cant decide if i should...?
i also read about bubble echo. Do you know about it?
i read you got heart surgery, so i thought its due to ASD.
Whats that valve surgery? And they used general anesthesia with propofol? Sorry, im still confused cause it seems you talking about different surgery(you also mention pacemaker)

So are you considering ASD surgery? If so, what is the doctor’s rationale for doing it as small ASD’s are usually left alone and don’t cause symptoms. I had several TEEs but they were to get better images of mitral valve function and just happened to show that I didn’t have a PFO. Yes, I know about the bubble test and think that they would do that before considering surgery to close a PFO. I had minor surgery to implant a pacemaker and about a year later, surgery to fix severe mitral valve regurgitation. For that surgery I had to have a general anesthetic with many drugs though I don’t think propofol was one of them. This valve fix was a much more complicated procedure but had to be done to prevent cardiac damage.

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.

 

[kisekishiawase]

What surgery do you need to have?
I had a local for a large area (about half my chest and upper arm. One of the differences is that with a local, you stay awake whereas with a general you are unconscious.
So are you considering ASD surgery? If so, what is the doctor’s rationale for doing it as small ASD’s are usually left alone and don’t cause symptoms. I had several TEEs but they were to get better images of mitral valve function and just happened to show that I didn’t have a PFO. Yes, I know about the bubble test and think that they would do that before considering surgery to close a PFO. I had minor surgery to implant a pacemaker and about a year later, surgery to fix severe mitral valve regurgitation. For that surgery I had to have a general anesthetic with many drugs though I don’t think propofol was one of them. This valve fix was a much more complicated procedure but had to be done to prevent cardiac damage.

Hello thanks for replying again.
Its surgery for endometriosis cyst 8cm+. Its sudden.
I still wish theres other way to reduce it other than surgery.
So far what they say is 2 option:
Cut open stomach took the ovarium out or laparoscopy(use gas to fill stomach, tilt down head)Im still unsure which one is better.

Yes i thought it will be better if i stay awake+ light sedation cause im worried of my apnea, breathing weakness. But doctor say. If i choose laparoscopy the gas will pressure my upper area(diaphragms, nerve, breathing, etc)and my head will be tilt down. it will make me in pain so they want me unconscious so i cant get freak out.
I feel its weird and scary..?

I thought bubble echo to check for ASD?
I didnt wanna do surgery for ASD back then i just hope doctor that suspect ASD was wrong. Cause other doctor didnt say it.
But now i dont know if i should check.

 

[Sushi]

I thought bubble echo to check for ASD?

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.

 

[Gingergrrl]

@Gingergrrl i havent got surgery since i got sick. (Last appendix surgery i was 6 y.o) I didnt follow up the ASD suspicion cause other doctor said different thing so im confused.

Thanks for explaining and I understand now.

I have apnea too(randomly)CNS, OSA, breathing issues air hunger, tightness, weakness, happened many times before, randomly but it didnt get addressed/ analyzed.

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).

Do you get episode from eating histamine food?

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 think local anesthesia and regional anesthesia are different? Since local is only for small portion but regional is wider area? I think its more complicated depends on wether the surgery is big or small?

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)!

Yes i thought it will be better if i stay awake+ light sedation cause im worried of my apnea, breathing weakness.

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).