On 6/23/2020 at 12:19 PM, MTRJ75 said:

I didn't have enough funds to go back for a second shot last summer. 

That is an interesting article. I wish that it were less expensive and that you could try a second shot. Do you mind telling us how much this therapy costs? 
 

18 hours ago, Lisa C said:

I was diagnosed SVT and even had a cardiac ablation. I had POTS misdiagnosed and SVT misdiagnosed for years thinking it was anxiety. 

A cardiac ablation could possibly have added to the problem. This is a question for me as well as I have Afib as well as dysautonomia and have been looking for information on how ablations affect the autonomic nervous system in the heart. I posted here about this recently. There are autonomic ganglia in the heart and these cannot be avoided during an ablation and this may be why some patients are prone to tachycardia after an ablation. This is just one thought.

23 minutes ago, p8d said:

On the advice of my dysautonomia neurologist I have found that drinking 8-16 ounces of water about 15 minutes before getting out of bed helps with morning dizziness and everything else that follows—tachycardia, shaking, tremulous etc. When I was at my worst I drank a liter of water and took a few salt capsules. The theory is that it increases the blood volume which you have lost overnight.

My autonomic specialist told me the same thing except that he advised drinking about 650 ml of an electrolyte solution before ever getting out of bed. This has been helpful to me.

14 hours ago, autonomicreg said:

Haven't noticed much of a difference yet, but I know I need to stay consistent and give them time to work. However, I am curious, wouldn't compression stockings hamper the possibility of recovering from dysautonomia?

If they are going to work, they should work immediately but it is best to put them on first thing in the morning before you get upright. You might not have strong enough compression for your needs. Many of us have had to experiment with different levels of compression to find the one that works best for us. And, as @Pistol said, you don’t become dependent on them. I have worn them for years and a few times when my OI improved for some reason, I was able to go without stockings with no problem. Unfortunately this never lasted.

Just now, RobinB said:

I saw Dr. Barboi at Northshore in 2016 and he was the one who diagnosed me. He ran a few tests that same day and said it’s probably caused by hyper mobility and that was that. I never went back. And now I have different insurance and can’t see him.

Well, many of us do have hypermobile EDS, but there is usually a lot more going on. I had comprehensive autonomic testing and it revealed a number of problems. Does your insurance cover any of the other autonomic specialists?

5 minutes ago, RobinB said:

I gave up and got tired of them not taking me seriously. Now I want to find my cause again and that’s why I want to go to Mayo. As long as I’m not going to have a heart attack or something I will try the medication.

Yes, good to follow your cardiologist's direction, as as he/she thought it would help. At a low dose, you should be fine. And if it doesn't suit you, there are many other beta blockers. As for finding the root cause at Mayo, it doesn't have a great reputation amongst Dysautonomia patients--maybe it has improved? Have you considered going to one of the autonomic specialists listed on this site?

31 minutes ago, RobinB said:

When you say we shouldn’t take it do you mean it’s dangerous?

I was given a wallet card with a list of medications that could be dangerous for someone with my genetic errors--metoprolol was one of them. These medications are now listed in my medical records. When I had a cardiac procedure a year ago, the hospital took this list very seriously. Here is what it said about metoprolol: "Significantly increased sensitivity to metroprolol--poor metabolizer. Based on the genotrype result, this patient is at risk of excessive beta-blockade when taking metoprolol at standard dosage.  Consider alternative beta-blockers such as bisoprolol or carvediol, or prescribe metoprolol a a lower dose. When compared to a normal metabolizer, a poor metabolizer may require a 75% dose reduction...If metrprolol is prescribed, be alert to adverse events (e.g. bradycardia or cold extremities)."

This testing alerted me to the role of genetics in processing drugs. Some of the other medications on my "don't go there" list were also quite common. So our usual practice of starting with low doses really makes sense if you haven't had genetic testing. Pharmacogenetics is a very specific type of genetic test that focuses on what genetic errors you have (SNPs--single neucleotide polymorphisms--and how they affect metabolisation of drugs. Another drug on my list--Amitriptyline) is one that I had been given in the past and had had a bad reaction to--now I know why.

23 hours ago, RobinB said:

Thanks for sharing your experience.  My concern is that my resting pulse is usually mid 50s to mid 60s.  I'm guessing this medication lowers your pulse consistently and not just when you're upright.  I think my dosage is the same as yours actually.  I just want to be able to cook dinner and grocery shop again .  

Yes, it will lower your pulse “across the board” so you and your doc may have to experiment to find your sweet spot. One note about metropolol—it is metabolized through CRP2D6 and some of us have a genetic error in that pathway which makes that a problematic choice for a beta blocker for those affected. Have you ever had any genetic tests? This came to my notice when my cardiologist did a Pharmacogenetics test and I did have an error in this pathway. She was just about to prescribe a beta blocker so she chose propranolol instead of metropolol. I am glad that I have had this testing as it pointed to certain drugs that I should never take and I began to wonder if some of our intolerance of medications has to do with genetic errors like this.

20 hours ago, RobinB said:

I do have a question though....forgive me I'm not very informed on most of this stuff.  If it's dangerous to be over 100 then why is it okay for people to exercise?  Or is it the fact that I'm not exercising that makes the elevated heart rate dangerous?

As Pistol said, it is fine while exercising because it is necessary to the physiology of exercise and it is not sustained--it returns to normal after exercise. Sustained rates over 100 that go on for protracted periods are what causes damage. I don't remember what the cut off for "protracted" is, but your cardiologist should be able to help get your upright HR down. Note: professional athletes or people who train intensely many times per week (and thus have a high HR for protracted periods) are much more at risk for Afib.

23 hours ago, RobinB said:

My pulse was normal when standing 100ish (usual is 140).

7 hours ago, RobinB said:

I’m not medicated at all.

I don't know how long your HR stays above 100, but I learned on an Afib forum (lots of really knowledgeable people there) that having a pulse over 100 for a protracted period can damage the heart. So, while I totally understand your response to medications, a good cardiologist or electrophysiologist should be able to find a way to keep your HR down. There are many ways to approach this, so sending best wishes to get to the bottom of this. 

1 minute ago, KiminOrlando said:

I know what you mean. I had a friend move in with me because it didn't seem smart to be alone. There is a home ekg device that pairs with your phone so you can get a quick medical grade ekg during these episodes and email them to your doctor. Maybe your doctor would think that is a good idea for you? I think they are typically about $100. I haven't done that, but I thought about it.

I have one--it is called Kardia or AliveCor. It is FDA approved and you can buy it on their site or on Amazon--no prescription needed. If I have something weird like that happen I take a quick EKG and email it to my electrophysiologist. It also does a computer readout that says "normal," "tachycardia," "bradycardia," "unclassified," or "possible Afib." You can also pay a small fee and get a doctor to read it. They usually get back to you within an hour. But my marvelous electrophysiologist gets back to me in minutes!

23 hours ago, MTRJ75 said:

I'm not sure how this can help us, but it seems important and was recently posted on the Dys Int FB page. 

https://au.finance.yahoo.com/news/first-3d-map-heart-neurons-153000974.html

Maybe it will lead to a better understanding of PVCs? 

Ah ha! This is information I have been looking for. I have Afib as well as Dysautonomia and the recommended treatment (if antiarrythmic drugs fail) is cardiac ablation. For those not familiar with this procedure, an electrophysiologist goes into the left atrium with a catheter that either freezes or burns lesions into the heart—these form scar lines that prevent errant electrical signals from disrupting normal sinus rhythm. But, when creating these lesions, autonomic ganglia are also damaged and this often effects the heart rate—occasionally creating POTS or the need for a pacemaker. These autonomic ganglia must be part of the “heart’s brain.” My EP says that you can’t avoid damaging this system when you do an ablation. This especially true as the first target of ablation is the tissue around the openings to the pulmonary veins.

Quote

The 3D map showed that ICN neurons are located in clusters at the top of the heart where the veins and arteries attach.

To me, it would seem that an ablation would be particularly risky fora Dysautonomia patient. I have read on this forum of several members who developed HR disturbances after an ablation.

5 hours ago, Shelly said:

Hope you have made a good recovery. I have mild regurgitation too. It’s unlikely that it will progress but there is always that small chance. That’s great you lived in he same city as Lyn Fredrickson and there was a support group. I live in England and none of the doctors here seem to know anything about it. 

I had a minimally invasive fix—a MitraClip which was place via catheter—so far so good. I am due for another echo whenever Covid makes that possible. The post MitraClip echoes have so far shown only “trivial regurgitation.” 

12 hours ago, Hadders said:

I know this is a very old post but has anyone found help to this problem as I am suffering with close to same problem here for past 3/4 years. 

I have a medical cannabis card and find that a tiny dose of edible Indica helps more than anything else. Of course you would have to be in a state that has quality controlled medical cannabis and have a permit.

5 hours ago, Shelly said:

Apparently 40 percent of people with mitral valve prolapse have dysautonomia. I have mitral valve prolapse and I know I have dysautonomia due to various symptoms. There is a book called ‘confronting mitral valve prolapse syndrome’ by Lyn Fredrickson which explains it all. It was a life saver finding this book as I thought I was going mad having all these symptoms and not getting any answers from the doctors.  The book also explains that although you were born with mitral valve prolapse the symptoms can be brought on later in life by a stressful life event like childbirth, bad virus etc. 

Yes, that book was a real eye opener for me! I happened to live in the same city as Lyn Fredrickson and participated in a support group offered by her hospital. Reading that book gave me the first clues as to what was wrong with me. That was a long time ago and I never expected my prolapse and regurgitation to progress—but they did this past year and I had to have it fixed. But for most, it doesn’t progress—still, good to have regular echoes.

21 hours ago, Clairebun said:

Ive ordered Licorice root - is this ok to take.

There are two types of licorice—one may be helpful and the other not. Sorry I can’t remember which is which but others here may know,

A specialist in Dysautonomia is be very helpful to most of us.

5 hours ago, Pistol said:

I do not see any real serious or drastic changes in your BP or HR, except that on May 16th your BP was in the systolic hypertensive range ( 135/102 ).

I agree with @Pistol. Most all of us see changes like this. The other thing to consider when considering seeking emergency treatment (other than Covid), is what they would do with you if you showed up at the ER or Urgent Care? From many of our experience--not much or nothing at all. Probably the best you could hope for would be a saline IV--which can temporarily help with symptoms but is not a day-to-day solution. Hopefully, when you can resume the diagnostic process, you will be prescribed some medications and strategies that help day-to-day.

8 hours ago, hnn21 said:

Is there someone who get through a surgical procedure like that with POTS?

I have had a couple too, though I have Neurally mediated hypotension rather than POTS. The risks are about the same and yes, anesthesia and recovery both need to be closely monitored. It is important to have a discussion with the anesthesiologist before surgery and give him medical records like a copy of your tilt table test. Certain anesthesia meds are preferred for Dysautonomia patients and others could be a problem. A good anesthesiologist should know this. 

23 hours ago, yogini said:

There are many studies which talk about the negative impact of salt but unless these are done specifically  on dysautonomia patients, I don’t worry about them at all.  Weare a totally different group that don’t get enough blood to our brains and other organs.  Many of us find that salt intake improves our bodily function and brings it closer to normal.  The longstanding advice from medical doctors who specialize in dysautonomia is that increase salt can be an effective treatment with minimal risks. 

And, I have seen 3 different cardiologists (an electrophysiologist, a cardiac surgeon and an interventional cardiologist) in the last year (for a mitral valve issue), and all three told me to go "high salt" as they understood that this was necessary for dysautonomia patients. 

5 hours ago, Pistol said:

These beats may result from heightened sympathetic

I believe that they can also result from any imbalance in the ANS as I have heightened parasympathetic activity rather that sympathetic activity, and I also get them. My EP says that, when using med students as controls, even this supposedly normal control group got lots of PACs--but ours seem to be more in the "thumping" category and thus bother us more.

Personally, I now have a pacemaker with an algorithm that over-rides PACs and this does seem to largely work, though obviously it is not a solution for everyone. 

3 hours ago, Pistol said:

Well - he told me that in the community of his peers ( it is a University Medical Center ) a vast majority of physicians actually refuse to treat POTS patients.

I think that Electrophysiologists have a slightly better record in that they specialize in heart rhythm disorders and we fit that diagnosis a bit better. I see a local EP and she is great, knows about and treats POTS, NMH etc., though she readily admits that she is not an expert.

16 hours ago, Hippopotsamus said:

 Has anyone else been able to find a PCP that believes in autonomic disorders? How did you find them?

I have had better experience with nurse practitioners then with M D’s. Of course it depends on the person but I have found nurse practitioners to be more open minded and willing to listen and look at research.

On 4/29/2020 at 11:05 AM, judyinthesky said:

Okay! How much do you take?

Quote

Elimination of cardiac arrhythmias using oral taurine with l-arginine with case histories: Hypothesis for nitric oxide stabilization of the sinus node.  Case histories of people with very frequent arrhythmias are presented showing 10-20g taurine per day reduced PACs by 50% and prevented all PVCs but did not prevent pauses. 

I don’t take that higher dose myself though, I take about 2550 mg.

33 minutes ago, judyinthesky said:

Ah, I am not too familiar with the autonomic testing, I went to two neurologists and they both did not consider. But it is good to know that there is that option. Yes, smaller meals seem to help me, but sometimes I just eat a little baby food and it's still a drama.

Most neurologists would not do autonomic testing. There’s actually no one field in medicine that specializes in the autonomic nervous system. Sometimes it will be a cardiologist or an electrophysiologist, sometimes a neurologist, sometimes an internist—you name it. My autonomic specialist had started as an internist until he got POTS himself and went back to medical school to specialize.

Hm, thanks. I eat already a collection of amino acids I will see whether it is in there.

You generally need a larger dose than what would be found in an amino acid supplement—the research cites very large doses to affect palpitations.

7 hours ago, RecipeForDisaster said:

I use taurine, and I find it helpful although I haven’t pushed the dose yet. It sure hasn’t lowered BP for me - that would be bad.

My mom found it a life changer!! She was going crazy from high HR and palpitations, PVCs, etc. and couldn’t tolerate a beta blocker or calcium channel blocker. She is thrilled with this stuff.

I take 2550 mg of taurine daily (that is considered a medium dose in the arrhythmia world). It doesn’t affect my BP and it is hard to assess its effect on palpitations as I also take an antiarrythmic. I take it because of studies and with the hope of not needing to increase my antiarrythmic.

4 hours ago, judyinthesky said:

I wonder what I could do to calm my vagus.

There are different types of vagus nerve involvement. It could be simple pressure on it--for this, my Autonomic specialist suggested smaller and more frequent meals. Then there is too high vagal tone (which my autonomic testing showed). This could mean that the parasympathetic nervous system is too active. There are more medications that increase vagal tone than those that reduce it. My Autonomic doc told me that the only specific drug he knew for reducing vagal tone was phenobarbital--I tried a very low dose but didn't notice much.