Sushi

I also find that exercising is very important, BUT, I think it is important to do so little that you don’t get symptoms afterward. Even starting with two minutes a day of some simple type of exercise and then building up perhaps a minute a week or whatever you can tolerate, can I help you build up very slowly overtime and strengthen your muscles. It has taken me over six months but now I can do simple exercises for 25 minutes a day. But, if I have to do physical chores that same day I do skip the exercise as it then becomes too much.

I also have these swings and am very often high in a doctor’s office. For me, yes some level of white coat syndrome, but also, I always drive myself to appointments through city traffic and have a caffeinated drink before driving to help with concentration. I think both the stress of driving and the caffeine play a role. 

On 10/14/2022 at 5:05 AM, MikeO said:

Not sure if this is going to be a patient responsibly to screen my drugs first or do better at educating my healthcare folks in my neck of the woods (no one has ever heard of Ranolazine) i know it is not a typical drug prescribed but i have to say it is very effective.

Well, it shouldn’t be the patient’s responsibility but, I my experience, it often is. I always check interactions and metabolic pathways when I start a new drug as the doctors never do! Kinda shocking. Twice I’ve found life-threatening contraindications. And what about the majority of patients who would never think to check or not know how? 

I had the Moderna bivalent booster a few weeks ago. I had about two days of high fever and extreme chills but then by the third day felt relatively normal with the help of Tylenol. Looking back I was more tired for about two weeks after the booster but then returned to my baseline. I had previously taken only Pfizer. I hope everyone recovers well from what ever reactions they get from the boosters.

@Abe You won’t know unless you try it unfortunately. It is great for some but for me it was the worst I ever tried—turned me into a zombie. But then I am higher in parasympathetic response than sympathetic and were at the reverse it might have been helpful.

On 9/30/2022 at 4:27 AM, RecipeForDisaster said:

I would really like to get this one done! I will try my PCP - I think she said she was not familiar with ordering it, while everyone else said I didn’t need it. I think I am an ultra rapid metabolizer of metoprolol, for instance. Which test did you have?

How did you respond to metoprolol? It came up under the ‘never take’ list for me because I am a poor metabolizer of CYP2D6. I took a test from Asperio Labs, but it is no longer available. Had I not had that test, I would have been prescribed metoprolol. Because of it I was prescribed propranolol instead.

3 hours ago, MikeO said:

There is an outfit in Milwaukee that does the pharmacogenomics testing as well. My Doc is aware of it and did confirm it is used to get psych meds dialed in. For now i have put this on the back burner. my cardiac meds have been stable for now. @Sushihas had the testing as well.

I find that pharmacogenetics testing is extremely valuable. The test I had covers a huge number of drugs and even if a drug isn’t covered, once they test your metabolic pathways, you can look up any drug you are considering to see if it is metabolized through a compromised pathway. For me, CYP2D6 is is very compromised and a lot of drugs use this pathway. I am now convinced that many of what we call drug reactions happen because they are metabolized through pathways that are genetically compromised.

3 hours ago, Ana said:

I have a heart arrythmia, PACs, that gives me palpitations and I used to take medication for that, Flecainide, but I stopped it a few months ago because my husband and I want to try to get pregnant later this year and my cardiologist told me I can't take it because it's not safe and she wanted to make sure I stopped it a few months we started trying to be extra safe. So I'm just riding out the heart palpitations and arrythmia when they happen. 

I have Afib and took Flecainide for years until it caused a very serious side-effect and I switched to Multaq. But all the antiarrhythmic medications have side effects and some of them are serious so your doctor is certainly right to have you stop Flecainide  before trying to get pregnant. Another option for PACs is triple magnesium—Magnesium Taurate, Magnesium Malate, and Magnesium Glycerinate. Some find this really helps with PACs.

5 hours ago, Ana said:

Lately I have been noticing that I will stand and walk and I will feel foggy and lightheaded but when I check my fitbit, it says my HR is not even over 100? 

Have you checked your BP? My heart rate does not rise when I am upright but my blood pressure falls giving me pre-syncope. This is quite common for some patients. For me, it isn’t POTS but rather neurally mediated hypotension. Some have both I believe.

18 hours ago, penguin2 said:

Does anyone else notice the valsalva  maneuver increases or causes symptoms?

This maneuver is likely to help with arrhythmia-type symptoms if they are triggered by a hypersympathetic nervous system, but likely to worsen symptoms if your triggers come from the parasympathetic system. This is my experience and others when dealing with arrhythmia but may extend to other dysautonomia symptoms. 

@MikeO Have you tried an abdominal binder? It helps me with post-meal hypotension as it prevents (to a degree) splanchnic pooling.

2 hours ago, Julesie said:

have a GP appointment on the 15th of September for a review of my HRT.

You could ask your GP to do a “poor man’s tilt table test” to check for POTS or neurally mediated hypotension. You can find the instructions online but basically your BP & pulse are first taken after you have been lying down for a few minutes, then after you have been sitting for a minute or so and then standing—every minute for at least 5 minutes, preferably 10. If your systolic BP drops 30 points or more or if your HR rises 30 beats or more, that is evidence to order a proper Tilt Table Test with a doctor who has knowledge of the autonomic nervous system and actually knows the proper way to do a TTT. Unfortunately many TTTs are not done properly and thus don’t reveal the problems. I had several upright tilts during my test, one of about 20 minutes and one that was aiming for 45 minutes but my autonomic nervous system went nuts after about 30 minutes with my blood pressure at 88/80 so the test was stopped as it was getting dangerous. You need that long upright tilt to uncover some of the basic problems. You also need several other autonomic tests along with the upright tilt. Did your daughter have a comprehensive tilt table test?

Then there is tachy-brady syndrome otherwise known as sick sinus syndrome. I was diagnosed with that and now have a pacemaker.

I always ask for an anesthetic agent without epinephrine and they have always had it at hand and been happy to use it. It just takes a bit larger dose and you may need more frequent injections if it is a long procedure. I even had a pacemaker put in using lidocaine without epinephrine. If a doctor or dentist is unwilling to give you a non-epinephrine injection, become an insistent patient! It is not only POTS patients who don't tolerate epinephrine, many others don't as well. I just tell them from the get-go that I don't tolerate it and to please use a preparation without it. Your experience is shocking!

5 hours ago, JennieHJO said:

Has someone successfully weaned him/herself from Klonopin? If so, how??

I've successfully reduced my dose by 3/4 but my doctor and I decided to keep me on a very low dose as it is beneficial to me. The secret? Tiny reductions in dose over a period of many months.

19 hours ago, mehaller said:

Does anyone have any reports on Paxlovid and the path to knocking this beast back?

It has a good record. Just check your meds for interactions as Paxlovid does interfere with a lot of meds. Good luck!

5 hours ago, MikeO said:

 I think @Sushiposted how to make it

Yes, InstantPot is great for grains—I particularly like it for steel cut oats: 3 times water to oats, 5 minutes depending on the texture you like. The instant pot is very forgiving and that you can put your oats or whatever on and forget about them as when the timer is finished it will keep them hot until you were ready to eat them. Steel cut oats are supposed to have the edge over regular oatmeal when dealing with cholesterol And no pot watching! 🙂

3 hours ago, DysautonmiaMatt said:

What is helping is the Tri-Mg supplement. No palps/PVCs so far. 

That is great! Hope this continues. 👍

5 hours ago, JennKay said:

Now I wear compression tights or knee highs at all times, except when sleeping.

This and electrolytes-fluids-salt is the most important factor for me. I could not function at all without compression knee-highs. On bad day, I’ll add an abdominal binder and wear higher compression knee socks. Gotta squeeze that blood back into the brain — and manufacture more of it with the fluids, electrolytes and salt.

I am further researching cardio neural ablation (ablation of the gangionated plexi in the heart) as I have a FaceTime appointment (Aug 4th) with the EP who will be doing my ablation. The research is very interesting: 

Quote

Although the extent of GP ablation required to treat vasovagal syncope remains to be determined, collectively, these results indicate that GP ablation is an effective and safe treatment option for patients with refractory vasovagal syncope and call for further randomised controlled trials to confirm the efficacy of this novel treatment. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5739885/

They are reporting about 80% success rates after 30 months. They also say that they are getting the same results for pre-syncope. I'll be very interested to hear more from my EP. My impression so far is that he won't mess with "experimental" approaches to this, but will only use approaches that have shown positive results in clinical trials. 

And:

Quote

Given that many other arrhythmias are related to autonomic imbalance, including inappropriate sinus tachycardia and outflow tract ventricular premature complexes and/or tachycardia, GP ablation may offer an alternative way to target these diseases with fewer side effects. Further studies are warranted to investigate the utility of GP ablation in these conditions. (same source)

1 hour ago, DysautonmiaMatt said:

I have not bothered with a GI doc as I do not think it would be worth my time

Like most of us with Dysautonomia, I have GI issues. I did consult with a gastroenterologist as I was getting a colonoscopy anyway. Pretty useless—Miralax and psyllium! An automatic specialist might offer more GI help.

2 hours ago, Alexandre said:

The thing is, I went to a buuunch of Drs. and none of them thought it was withdrawal happening, they all thought that Klonopin was simply working as a good treatment to something else.

 

When a doctor put me on a Klonopin taper (it wasn’t my idea, the doc just didn’t want to prescribe it—I was taking a low dose for sleep), my Afib episodes increased exponentially. Another doctor (integrative) said that he understood why this happened as Klonopin affected catacholamine levels—and he put me back on my low dose and the Afib episodes were greatly reduced.

2 hours ago, DysautonmiaMatt said:

@Sushi  If you could ask him how many mg he takes of the 3 different forms that would be awesome!! I ordered a brand that has all 3 combined in 1 cap to try but probably cheaper to buy each separately. 

He said that he uses the KAL brand, taking 1/4 of each 400 mg or a total of 300 mg of magnesium in the morning, and then does the same at bedtime. He also sometimes takes 1 Natural Rhythm Triple Calm Magnesium in the evening instead of the 1/4 tablets. He doesn’t say why he sometimes take the KAL brand twice a day and sometimes takes the Natural Rhythm brand in the evening. Hope it helps you too! Many people do say that the type of magnesium makes a big difference.

18 minutes ago, DysautonmiaMatt said:

Did this person say its all in one combo formula or is it taken separately?

He takes them separately and just any decent brand that he buys on Amazon. He takes all three in divided doses two or three times per day. 

@DysautonmiaMatt Someone on an Afib forum I follow says that taking a combo of magnesium glycinate, malate and taurate completely stopped his PVCs and PACs. He said that it is combo that is so important. I just read this now so thought I’d share it.