Sushi

On 11/24/2021 at 10:25 AM, cmep37 said:

In terms of my cardiologist, I finally saw him yesterday and to say the appointment was not a success would be an understatement! (I won't an you with all the details but you can read about it in the thread Want to Scream if you are interested).

I have a pacemaker and one of a couple reasons my electrophysiologist recommended it was tachy-brady syndrome and pauses. I know that in the UK you need a referral to see an electrophysiologist but they are SO much better with rhythm/rate problems.

1 hour ago, MTRJ75 said:

That's another concerning theory I'd read before. Are ablations still contraindicated for the Afib if the person also has dysautonomia? 

Well, it is hard to predict the outcome of ablations for people with dysautonomia and Afib as they often ablate autonomic ganglia in the heart and they don’t seem to really understand what effect would be for someone with dysautonomia—so I am hesitant. Ablations for POTS are, I believe, not usually helpful.

1 hour ago, MikeO said:

can i ask what other drugs you are trialing?

A new primary care doc insisted on weaning me off clonazepam for sleep. That was a long disaster and they were trialing me on non-Z drugs that had drowsiness as a side-effect—first generation antihistamines and tricyclics antidepressants. Of course they all had awful side-effects. After I consulted a chronic disease specialist on Zoom, he put me back on clonazepam! So I had assumed that the side-effects I was getting were from these drugs rather than Flecainide.

58 minutes ago, MTRJ75 said:

That is really scary. This can happen w/ dysautonomia or was it just specifically a medication that caused it? This is obviously the biggest fear with PVCs is that the entire signal gets stopped. 

It was the antiarrythmic drug Flecainide that I was taking to prevent Afib. I had taken it for about 5 years with no problem. The heart block symptoms came on over a few weeks but I did not connect them with Flecainide as I had been trialing a couple other drugs. I started noting the pattern of the symptoms in relation to the other things I was doing and it became clear that it had to be Flecainide. Flecainide is a tricky drug and its  effect on you can change. 
 

The strange thing is that my electrophysiologist thinks (and I agree) that my Afib was caused by dysautonomia. My hope has been that if my dysautonomia could be controlled/healed, the Afib would go away. But, they say that this won’t happen as the process of Afib itself seems to ‘train’ errant electrical patterns in the heart.

30 minutes ago, MTRJ75 said:

What if the problem is autoimmune in nature. If autoantibodies are attacking your neuroreceptors and not just destroying them, but causing them to act erroneously, as theorized, don't you have to stop that before you can truly heal? 

I don’t think that the ‘good’ brain training programs are suggesting that you ignore symptoms and not take any medical action possible to deal with them, but rather to reframe your response to troubling symptoms as they arise, moving your response from ‘OMG I am in real trouble here—once again,’ to ‘okay, this is happening, what is the best way to deal with it?’ The idea seems to not set off the alarm bells in the sympathetic NS. So, say I start to pass out—rather than reacting with ‘ Yikes, I am in big trouble!’ I might rather go with, ‘Oops, I stood up too long again. I’ll just sit/lie down and drink electrolytes/take a med (or whatever) and try to remember not stand up so long and be more aware when subtle symptoms arise.’

It is weird but I seem to have tamped down my response to what feels like (and may be) medical emergencies to a sort of pragmatic response. Last week I had complete heart block (the signal for the heart to beat was completely blocked). I sent my electrophysiologist a Kardia Mobile generated ECG and she emailed back immediately asking me to come right in. I was really dizzy and short of breath so a friend brought me in—but amazingly, though I recognized that this was a very serious symptom, panic didn’t kick in. Luckily I have a pacemaker that MY EP could read and see what was happening. It had been caused by a drug that I had taken for years. Even when I was told what was happening my response was still surprisingly pragmatic: ‘What are we going to do about this.’ I was actually surprised that  the OMG response never arose.

18 hours ago, MTRJ75 said:

To add: It really messes with your mind too because you're always on the lookout for something I think. 

May have had this discussion somewhere else recently and I think it may have been Pistol, but sometimes, when there's an actual sickness or event, some of the other symptoms recede into the background because your brain is focused on something else at the moment and forgets to mess some other stuff up. 

This raises another aspect: neural pathways. I don’t know if anyone here has worked with neural plasticity and brain training, but I find that there is something to it. For me, there is a difference between routinely scanning my body for autonomic problems, and simply recognizing them and responding to them when they occur.  The routine scanning is, for me, like greasing the neural pathway. Our experience of ANS symptoms sometimes receding into the background when we are having some other type of medical event, is interesting.

After long experience, I have pretty good sensitivity to triggers and try to avoid them. This makes scanning much less necessary for me. 

I’m wondering if you tapered off the beta blockers or stopped all at once? I have been told to taper so that the body can slowly adjust. Adrenaline is tricky!

2 hours ago, Castorp said:

I have a diagnosis of autoimmune POTS and my blood tests persistently show low levels of norepinephrine. However, my doctors do not attach any importance to this finding. I wonder if these low levels of norepinephrine are usual in  POTS patients. How can I increase norepinephrine?

Many thanks for your help.

I was not diagnosed with POTS as my HR doesn’t rise while standing, rather my BP plummets toward fainting, but I did have low norepinephrine in the synapses  and responded really well to Strattera. Our diagnoses are different but that might be something to ask about.

On 2/5/2022 at 9:43 PM, Clueingforlooks said:

Don’t know what else I can take to stop this happening as the flecainide used to help with my adrenaline as well. 

Did your doctor explain why they took you off flecainide? It is an antiarrythmic medication—I take if to prevent Afib.

On 1/20/2022 at 1:39 PM, Nin said:

If it is PEM that is making you feel so terrible from exercise is it safe to keep going? Or will it cause more harm. I get so exhausted from walking and now have a mobility scooter for long distances. Im just worried I've given up on myself and have a big problem with what other people think of me. Like they might think does she really need a scooter and then I'm back to questioning myself again. I'm just thinking what if pushing myself is making me worse.

For me, if I get PEM, that is a signal to back off to a level where I don’t get it. I was lucky that I had an autonomic specialist who told me to immediately sit down if I felt symptoms—even if it met sitting down on the floor of a store. It felt weird at first but I found it to be good advice.

1 hour ago, CallieAndToby said:

Thanks for responding. Yea they told me the solution was physical therapy but there must be more to it than that. I'm sorry you haven't found something concrete to help. What are the symptoms you attribute to vertigo? 

I do go to physical therapy and after a session my vertigo is gone, but it returns the next day. For me, it is jumpy vision—if I turn my head, for instance, my vision jumps around and I lose my balance. This makes walking very unsteady.

6 hours ago, CallieAndToby said:

I have vertigo, anybody else have this diagnosis? I found a study that showed 46% of its POTS participants had vertigo. 

Yes, I have vertigo. I haven’t figured out how to manage it though. Antihistamines do seem to help but it is a big problem for me. I have NMH rather than POTS.

9 hours ago, SCOOBY said:

The real problem is that after the exercise (often not until several hours later), my heart rate is extremely high, I feel anxious, and I develop terrible fatigue.  These symptoms will gradually resolve over the next several days.  Is this typical?

Yes, that sounds like post exertional malaise, commonly known as PEM. It is typical for many. So the trick is to learn your body’s signals as to when you are crossing your line. It took me a long time, but now I recognize my signals, though they are subtle—a feeling in my chest is one of them, sort of a hollowness, but it is probably quite individual. I also did cardiac rehab and was able to double my exercise capacity over three months. They had me exercise on equipment for 3 - 5 minutes, then rest for 5 minutes. after each segment they measured my vitals. They increased the time and level VERY slowly, and I think that is key.

On 1/4/2022 at 9:36 AM, Heartbroken said:

Happy new year to each one of you.

Just wondering if you guys have Hypermobility, EDS or any other type of connective tissue disorder.

Recently I have been diagnosed with Hypermobility (after six decades) and my geneticist is testing me for Loeys-Dietz syndrome (LDS).

Good luck to all.

Yes, I have hEDS. They are looking for the immune signature right now I believe this is one of the few types of EDS where they haven’t discovered it yet. Off to the physical therapist today to get relieve from EDS based pain. I had a mitral valve prolapse which is more common in EDS patients and it was fine with only trace regurgitation for decades…then the regurgitation increased to severe and I had to have it repaired—minor procedure done though a vein. Just a possibility to be aware of.

19 hours ago, mehaller said:

found a tilt table a few hours away.  

That is promising! But, it isn’t the tilt table that is important but rather the person who designs the tilt table test, administers it, and interprets it. You can get totally different diagnoses from different doctors depending on their experience and skill in using a tilt table. When I had a comprehensive test it took about 1  1/2 to 2 hours. Hope you find someone who skilled and experienced with this test. Sorry that compression socks have not worked for you.

23 hours ago, mehaller said:

Compression socks were a joke and started some weird tingling.

Welcome to the forum.

A couple of things: the drop in BP after eating, for me, indicated splanchnic blood pooling (abdomen). I am wondering about your experience with compression socks as, if properly fitted, they shouldn’t cause tingling. If mine are too tight I get symptoms like that, but otherwise they are my best defense against BP drops while standing. I can’t even stand long enough to brush my teeth without knee-high compression socks. An abdominal binder also helps me (for splanchnic pooling) though I don’t use it as much. Hope you find some help soon.

21 hours ago, Picklesquish said:

I’m taking Cozaar to treat BP spikes and Clonidine patch to control adrenaline. Seems to be working. Beta blockers and calcium channel blockers made the ectopics worse,

How often do you get Afib and do you get a high HR during the episodes? I just had an episode that was probably triggered by the medical cannabis I took for sleep! Frustrating.

20 hours ago, Chasel8 said:

 I am screaming that it's being caused by autonomic instability but it's falling on deaf ears.

Though my Electrophysiologist agrees that I developed Afib because of Dysautonomia, that doesn’t seem to change the treatment once the pattern of Afib has been established. I wish we could treat the Dysautonomia and thus get to the root of Afib, but research into Dysautonomia doesn’t seem to be there yet.

2 hours ago, Picklesquish said:

Does anyone else experience afib caused by dysautonomia? I was incorrectly diagnosed with paroxysmal afib until my doctor connected the dots and referred me to a dysautonomia cardiac doc. Wondering if I’m the exception?

Yes, I have Afib that my Electrophysiologist thinks is triggered by my dysautonomia. Still, it is paroxysmal Afib even though it wasn't caused by the usual things. What treatment are you having? I am taking the antiarrhythmic flecainide and that pretty much controls it so far. 

Best wishes!

6 hours ago, SCOOBY said:

Has anyone else had problems with rehydration solutions that contain sugar?  

Can anyone recommend a rehydration product that is sugar free?

I can’t tolerate sugar either. I have been using Ultima Replenisher—0 carbs, 0 sugar. Sweetened with stevia. 

7 hours ago, Ms. Susan said:

Trying to find pediatric specialist dysautonomia 

You might want to check “Syncope in Pediatrics with Julian M. Stewart, MD, PhD.”

1 hour ago, JennKay said:

@Sushi- Got it on the tagging! I am new to posting, but am getting the hang of it now.

Great, thanks!

1 hour ago, JennKay said:

Did you figure out you had afib b/c you sensed something was off or was it found on a monitor? I

Well, I didn’t figure it out! I just knew that I felt absolutely ghastly and that my pulse was 180 and irregular that and my BP about 170 over 130. I called my PCP and she told me to call an ambulance or go right to Urgent Care. Being a wimp about ERs, I managed to drive to a nearby Urgent Care. They put me on a monitor, started an IV and called an ambulance. The ER was great. I told them I had Dysautonomia and they knew the basics about it and gave me an antiarrythmic. By the way, my Electrophysiologist asked a well-known cardiologist who knew a great deal about Dysautonomia and she also agreed that, in my case, Afib was most likely caused by Dysautonomia. 

I now have Kardia monitor that I keep in my handbag (it is about the size of a credit card) so I can take an ECG in a minute. It tells you Normal, Possible Afib, Tachycardia, Bradycardia or unclassified. They are about $75 and let you email the reading to your Cardiologist or PCP. My Electrophysiologist has always responded within minutes which is really reassuring.

On 10/16/2021 at 11:04 AM, Saskia said:

VAERS is just a reporting system and they do not reach out to help.

I enrolled in V-Safe after my vaccination and they texted me at least once a day and then regularly but less often to check. They say that they will phone if you report adverse symptoms but since I didn’t have them I don’t know if it is true. They were still checking on me months later.

So sorry to hear of the awful reactions that some are getting. I had a much stronger reaction to the booster than the first two (Pfizer). I have been tested by an immunologist and that was helpful as I clearly have some screwy stuff going on there.

15 hours ago, Jyoti said:

And an upright MRI in both flexion and extension as well.  

Agree as there is a growing amount of data on cranial cervical instability and Dysautonomia. There are only a few neurosurgeons, however, who have the expertise to recognize and deal with it.

On 11/20/2021 at 6:37 PM, JennKay said:

Thanks, Sushi! Did the Strattera help with the ectopic beats, or was it mainly improving the symptoms associated with your elevated vagal tone? I have also wondered if something like this would be helpful for my symptoms. 

And yes, I agree about the ablation and antiarrhythmic being big hammers for ectopic beats. The first cardiologist I saw when all of this started said the same thing and that no treatment is necessary but I decided to try metoprolol anyway. I wish I would have passed on that b/c it definitely caused more issues. I now suspect the issues I had on beta blockers were due to my elevated vagal tone - the beta blockers essentially left my vagal activity fully unopposed! Bad idea...

Do you think you developed afib b/c of your elevated vagal tone?

Hi JennKay,

Sorry, I missed your reply. I you tag me or quote me, I’ll get an alert.

Strattera helped with all my symptoms but since it increases norepinephrine levels could be a problem for those who already have high levels. 
 

Another thing about metropolol is that it is contraindicated for those who have the CYP2D6 genetic polymorphism. It is relatively common and I have it, so I was given other beta blockers.

Re. developing Afib, my electrophysiologist thinks it was because of dysautonomia and that makes sense to me too. Another thing to be alert for!

On 11/21/2021 at 1:23 PM, MikeO said:

Just like the afib folks only way you will get a ablation while on the table is if you are presenting. If not the procedure will be aborted. I have seen this many times.

With Afib, an experienced electrophysiologist will provoke it while you are on the table and then ablate it. I really hope I can avoid an ablation though as some with Dysautonomia report that it can create other problems.
 

45 minutes ago, MikeO said:

Using a bar stool is a good idea.

Yep, I also use a bar stool.

Hi JennKay,

I also have problems with very high vagal tone—all my episodes of arrhythmias happen at rest and autonomic testing showed very high vagal tone. I did respond well to Strattera which increases norepinephrine in the synapses. I now need to take an antiarrythmic medication because I have also developed Afib, and of course this also stops the ectopics but is a very big hammer for just ectopics. You could discuss ablation with your cardiologist though this is also a fairly big hammer. Best wishes!

I am in the same boat—surprise, surprise! I’ve found one supplement that is particularly aimed at reducing cortisol at night—Seriphos. I do think it is helping though it doesn’t do the whole job.

My doc tried me on a low dose of gabapentin and it actually kept me awake so now I am taking it in the morning and it makes me more alert during the day. Good luck with this and let us know if you discover something.