Sushi

Dr. Blitshteyn is following this on Twitter: 

https://twitter.com/fudimmarat/status/1668631897747103749?s=12

There is a lot iPod interesting information there.

2 hours ago, Sarah Tee said:

, did you see any indication of the cost?

I don’t think it has been set yet, but they were thinking about $50 per month—which is a lot!

Quote

“STAT Health on Tuesday announced its new in-ear wearable, the STAT, which measures blood flow to the head. When users stand up, the earpiece automatically tracks changes in their heart rate, blood pressure trend and blood flow, which are useful insights for patients who commonly experience dizziness and fainting spells as a result of illnesses like long Covid and postural orthostatic tachycardia syndrome (POTS), among others.”

Sounds interesting though it looks like it will require a subscription. They say it will give advanced warning of fainting. 

43 minutes ago, MikeO said:

are boys allowed to wear these?

If you dare!

I’ve tried a lot of different binders and the ones that worked best were “panty girdle” types that either had hooks and eyes or zippers allowing you to get them quite tight. Anything that you can pull over your hips is probably not tight enough.

1 hour ago, dkd said:

I was mainly wondering if it needed to be higher or was wearing it lower okay.

It needs to compress the splanchnic area so my doc said lower is better.

3 minutes ago, Sarah Tee said:

@Sushi, that is so interesting. I am glad you got to see someone so knowledgeable and skilled. And it’s always a bit of a thrill to meet someone who is at the top of their profession.

It is interesting how the medical model is changing. With this doctor, you don’t go for a diagnosis—you already have it and either your cardiologist or you yourself have done the research to discover that he is at the top of the field. I did my own research (through a patient forum) and self-referred. Probably the majority of his patients have had failed treatment in the past so are seeking a doctor with proven expertise. I find it sad that many patients are in systems where they can’t choose their doctor because, for those of us with Dysautonomia, we really need our medical care to factor in all the wild cards that Dysautonomia brings. 

15 minutes ago, Sarah Tee said:

I can understand your EP would not want to be overwhelmed with dysautonomia patients. Forgive me for being so overenthusiastic. I get carried away sometimes.

There is so much unmet need in all medical areas, not just dysautonomia. I imagine many many people with heart disorders are waiting for ablations

It is a good idea, and I’d like to support it too, it is just that in some fields doctors have become micro-specialized to meet a certain critical need. My EP only does research and practice with arrhythmias and does not see patients for medical management of them—only procedures in the EP lab. He is an Interventional Electrophysiologist and his waiting list is long as people come to him from all over the world for ablations—I waited six months. He is totally dedicated and caring, though due to need, he only sees patients who can be helped with procedures like ablation or implantation of a Watchman. He heads an arrhythmia institute with about 15 EPs, 6 EP labs and 24 patient beds. Excellent, excellent care but limited to certain conditions.

He readily adapts to research and clinical experience though and was well aware that my history of Dysautonomia and mitral valve prolapse and regurgitation made my treatment more complicated. I went to him because he did have experience treating patients with this history and I knew that it was an important consideration for an ablation. So I am sure that he will be very interested in my improvement in OI, though I doubt that he could expand his practice to include Dysautonomia patients who don’t have conditions like Afib.

2 hours ago, Kyser420 said:

Does anyone else have a pounding heart? Or find lying flat to be difficult? 

I’d bet that a lot of us do—I certainly used to until I had effective treatment. I also have the diagnosis of neurocardiogentic syncope, though there are various terms for what is basically the same condition. Have you considered seeing a doctor who specializes in Dysautonomia? Most cardiologists are not experts in it, though Electrophysiologists often know more about it than general cardiologists as they specialize in heart rhythms. Did your cardiologist evaluate you for POTS? Unfortunately the symptoms you describe are typical of Dysautonomia and all of us here are working with our docs to find answers and effective treatments. So you are in the right place though I wish that we could offer more solutions.

7 hours ago, Sarah Tee said:

So it’s winderful to hear you are able to cook without taking lots of breaks.

It is huge! I am not even thinking about strategies for meal prep now—I just do it. I do wear compression knee socks and after a hot bath I have limited standing ability but it is so much better. There isn’t yet data on whether this boon will wear off but I am hopeful. My EP is a world leader in ablation for arrhythmias and that is his focus, so I am not sure he would be able to open up his time and energy to Dysautonomia patients, though he is very aware of the problem—particularly since so many post-Covid patients develop POTS and he is seeing this in his patient population. I have a followup with him in about a month and will tell him how much this ablation has helped my OI. When I talked him about it beforehand, he was dubious that it would make much difference as I have a pacemaker which prevents the vasovagal syncope that is usually goes together with bradycardia, so my improvement may cause him to rethink.

If he did get involved it would have an impact as he is one of a handful of elite level ablationists and has a significant voice in the EP community. But, he is already overcommitted and his expertise is in the clinical and research aspects of ablation for patients with really complex arrhythmias who have failed earlier treatments. 

22 hours ago, Fernfairy said:

My heart rate does go up when I stand greater than 40 beats, but it’s inconsistent when I’m up it bounces around.

This does sound like an area where an electrophysiologist might have some helpful input. When you say "bounces around," is it a regular rhythm or an irregular one? (like an arrhythmia?) You can usually feel an irregular rhythm by simply holding your fingers on the pulse in your wrist. 

4 hours ago, Pistol said:

I would pee my pants having to even enter a home depot without a wheel chair or walker, and would not dream about standing ANYWHERE for 45 minutes!

Yes, it is awesome. My hope is that the research on this becomes more widely known among the specialists who treat dysautonomia. I don't think that many know about it now. It has been a topic for the last two years at the annual Heart Rhythm Society conference each May and was apparently one of the hot topics this year. The Heart Rhythm Society is the professional organization for electrophysiologists but dysautonomia doctors in other specialties may not be aware of it, and many electrophysiologists don't keep up with research. So it might be interesting to mention it to your doctors as a topic to watch. 

Update after 7 months: I passed a milestone yesterday! Big box stores have always been my nemesis—just couldn’t walk from one end to the other without needing to sit down due to OI. I am working on a landscaping project in my yard and went to Home Depot with the contractor yesterday, with an attitude of “Let’s give it a try!” To my surprise I was able to walk the store and even stand around for about 45 minutes with no problem. Also, I haven’t had to stop meal prep and sit down in ages. So far so good! I wish this treatment option were more widely available. They are talking about clinical trials though.

9 hours ago, Fernfairy said:

Hi Sushi.

You’re the first person I’ve found with a similar situation - thank you for sharing your experience and suggestions! 

 I was diagnosed after an echo with low ejection fraction and orthostatic hypotension via a tilt table test, and also paroxysmal tachycardia - but I’m not even sure exactly what that means yet. I‘m pretty scared about the heart failure issue and am feeling overwhelmed by all of it. I’m in Alaska so I feel lucky to have found a cardiologist who specializes in autonomic dysfunction but I’ve already been thinking that a second opinion out of state would probably be a good idea so I’ll look for an electrophysiologist. Thanks again! 
 

Hi again,

Paroxysmal tachycardia means that it comes and goes. If you have had a tilt table test I guess they would have ruled out POTS which is tachycardia while standing or being upright. Has your cardiologist mentioned the possibility of sick sinus syndrome? That is characterized by having bradycardia sometimes and tachycardia sometimes. That is why I was given a pacemaker. Very good that you have a cardiologist who specializes in autonomic dysfunction but with the added question of heart failure, a second opinion sounds like an excellent idea. Also, “heart failure” can improve and/or disappear with the right treatment so learning more would be to your advantage.

23 hours ago, Fernfairy said:

I was told by my cardiologist that because my autonomic dysfunction had gone on for so long without treatment I was now in beginning stage heart failure. My blood pressure has always been low but I’ve been experiencing significant orthostatic hypotension which is made much worse by the heart failure drug they put me on. I also have a resting heart rate around 50-55, which dropped down in the 40s with the med, although it does shoot up when I stand up. They put me on a very low dose of Entresto, but it lowered my blood pressure and heart rate too much and they had me stop until I can check in with the cardio next week.

I have some of the same problems with EDS, orthostatic hypotension, and I had bradycardia. Are they diagnosing beginning stages of heart failure due to a low ejection fraction and bradycardia? I got a pacemaker a few years ago which deals with the bradycardia but the orthostatic hypertension remained a problem. I find that knee-high or higher compression garments are an absolute must as is hydration with electrolytes and LOTS of salt. I also developed Afib and recently had an extensive ablation where they also ablated the autonomic ganglia in the heart and this has about tripled my ability to stand up without presyncope. Are you seeing a general cardiologist or an electropysiologist? A consult with a good electropysiologist might give you some new perspectives as heart rate and rhythm are their specialties and some of them actually treat Dysautonomia. Very best wishes.

I just got out of the hospital yesterday after a followup procedure after my cardiac ablation last November. They placed a Watchman device in the heart to lower stroke risk and of course I was on a cardiac telemetry unit afterwards and the heart-healthy” food was no salt. Predictably my BP tanked and I educated the nurses on Dysautonomia…and they believed me and gave me a salt feast and were impressed when my BP started creeping back up. No one at that hospital ever questioned Dysautonomia or EhlersDanlos and and took they them into consideration in my treatment…except for the salt factor! Gotta say that the anesthesiologist was really great and took these diagnoses very seriously.

6 hours ago, Ginger_ said:

(my new average is closer to 140).

For how long does your HR stay over 100? High heart rates for prolonged periods is something you might want to consult your doctor about?

This is very interesting. I have been tested for all the various forms of folate and have extremely high levels of the unmetabolized form and extremely low levels of active folate. And though I do have hEDS, I don’t have the MTHFR variations in question. After reading this I took a tiny dose of active folate as I have had trouble with normal doses in the past. 

I wear a mask anytime I am indoors outside of my home. Yes, people are still getting Covid and long Covid is real and is ruining lives. For me, masking is a small price to pay for a good measure of protection. I wear an N95 as those are supposed to give the most protection. In many parts of Asia people wore masks in public long before Covid and still do. There it is the norm.

23 hours ago, Jyoti said:

I'd be curious to hear from anyone who has been ill for more than five years and has had real improvement from SGB. 

One of my friends, who has had ME/CFS and Dysautonomia for many, many years, had many SGB treatments and her results were about the same as reported here--maybe a little short term benefit but nothing that lasted.

Also, some of us have reverse cortisol curves with low levels in the morning and high in the evening, which can feel like a boost in the evening.

I agree with others that while Dysautonomia is not caused by the mind, stress can make the symptoms worse. Here is my anecdotal response to such docs: I recently had a cardiac ablation for Afib and part of the protocol involved ablating the autonomic ganglia in the heart. After this procedure, I am able to stand up for about 3 times as long before starting to faint. So...they didn't do anything to my mind, just my heart!

38 minutes ago, MikeO said:

Malaise is a big word for me Haha...Does take me a few minutes to recover. Hope that helps!

PEM is delayed (a day or two later) and more like “being sick” than being tired. It is a real bugaboo for those of us who get it as it is so hard to know if you have gone over your limit when you are actually exercising or exerting in other ways. You find out the next morning when the freight train hits!

3 hours ago, Ranga said:

@Sushi @Sea otter I am on a reddit dysautonomia group that also a thread about many people with a similar pattern.. the reason suggested by the doctor in the link above makes sense. It is related to blood flow. I think in our case, it maybe due to a malfunctioning nervous system rather than actual structural issues causing the compression.

Thank you, very interesting, though I wish there were solutions (she writes as the left side of her head throbs!).

Most of my symptoms are on the left side as well—particularly in the head. Everything from sinus, Eustachian tube, ear, glands, swollen gums and migraine. This has puzzled me all my life.