Sushi

Greg had to retire due to dysautonomia but reunited with the Wiggles for a benefit concert for fire relief in Australia.  He was admitted to a hospital having suffered cardiac arrest. A media statement said that “a procedure had been performed.” https://people.com/music/the-wiggles-greg-page-medical-incident/
 

Greg was a member of another dysautonomia forum I participated in years ago. He has been a spokesman for those with dysautonomia over the years. Wishing him well.

@Pistol That is brilliant! I haven’t seen a video of it before—thanks!

39 minutes ago, Pharmgirl said:

I'm wondering if anyone has ever used a BP cuff at home and done their own version of a tilt table? I don't have a diagnosis, but it seems like it would be fairly easy to recreate a laying to standing scenario at home while measuring BP and heartrate?  Am I missing something that they do that I wouldn't be able to see? A specialist will be a wait I'm sure, and I'm just trying to rule things out in the meantime on my own!

Thanks. 

I do this regularly and when I was seeing an autonomic specialist he did it at the end of every appointment. And yes it does give you some basic information but a full tilt table test in a clinic gives you much more. I had my current EP’s nurse do this in her office just to get my drop in blood pressure on my current records. I always drop 30 or more points systolic. To do this it is good to go from lying to sitting and then from sitting to standing. Also it is good to have a blood pressure machine with a memory so that you can show it to your doctor.

13 hours ago, Scout said:

I have mitral valve prolapse and regurgitation which we monitor (it is not severe enough for me to have surgery, but he said I may need it in the future)

I had mild prolapse and regurgitation most of my life and had figured it would stay that way. But I am no longer young and it did change and require surgery so it is just something to keep an eye on and it looks like your cardiologist is doing that.

18 hours ago, Scout said:

My cardiologist is never worried when I mention this. He says it is most likely muscle pain, or, some short lived pain from my heart mitral valve, which is prolapsed. It still takes me off guard, however.

Is your cardiologist open to further investigation? If it were me I'd want to find out the cause--even though it is most likely totally benign. Having just had a mitral valve repair for severe regurgitation (discovered in a routine echocardiogram) I am alert for any symptoms that are unexplained. 

On 1/11/2020 at 1:00 PM, Sushi said:

I want to gather more information--like would the EP performing the ablation be able to selectively ablate either the parasymathetic or sympathetic parts of GPs (autonomic ganglia, known as ganglionated plexi (GP)? or is is sort of Russian roulette if they ablate these ganglia? I believe that many EPs do ablate the ganglia. 

Sorry for quoting myself but I really want to learn more about this and realized that the one doctor who might be able to clarify it is Dr. Blair Grubb. I am not his patient but have followed his work for many years. He is an EP, does ablations in very specific circumstances and would know the risks or benefits of ablating the autonomimic ganglia in the heart when doing an ablation for Afib. The best EPs who do many, many ablations for Afib would not have his knowledge of how it might affect the ANS of a dysautonomia patient. If anyone has an idea of how to contact him with, what for him would be a simple question like this, could you please send me a private message? For me this is a critical question as the drugs I am taking now to prevent Afib will stop working (they always do eventually) and then ablation is the only known treatment.

12 hours ago, Alice Jean said:

I too have had horrible symptoms since my cardiac ablation (12/2018)  i went from working full time for 36 years to a needing a wheelchair / cart to go grocery shopping.  My life is over as I’m just existing now.

This is really tough Alice Jean--I totally feel for you. 

5 minutes ago, CallieAndToby22 said:

I've tried tinctures, vaping, and cream.

I use a very small dose of edible indica (dark chocolate that is very clearly dosage marked) and it is extremely helpful for "extremis" symptoms like the "I feel like I am about to die" feeling. An indica salve helps me with arthritis type aches and pains, but I don't have experience with deeper pain. So sorry!

On 1/9/2020 at 5:11 PM, Super_tachy_1 said:

 From what I have read, I think AFib ablations usually are in the left atrium around the pulmonary veins, so maybe you might be relatively ok if you eventually decide to do it?

Yes, Afib ablations are in the left atrium, but: 

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It should be noted that although the epicardial surface of both atria is covered by a dense neural plexus, the highest density of neurons is found at the posterior wall of the left atrium (5). Several studies have demonstrated that the GP contain both sympathetic and parasympathetic elements https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4540352/

So, I want to gather more information--like would the EP performing the ablation be able to selectively ablate either the parasymathetic or sympathetic parts of GPs (autonomic ganglia, known as ganglionated plexi (GP)? or is is sort of Russian roulette if they ablate these ganglia? I believe that many EPs do ablate the ganglia. 

Quote

I asked the EP who did the ablation and the tilt test about this twice, and both times he seemed to dismiss the idea.  I actually have an appt for a second opinion with another ER tomorrow morning, so we'll see what that brings.

Good idea! I'll be very interested to hear the second opinion. If you want to read research material before your appointment, the reference above is very interesting, as is: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4321068/#__ffn_sectitle

I really hope all this resolves for you. 

18 hours ago, Super_tachy_1 said:

After the ablation, I developed an overall much faster and more reactive heart rate, and started getting bad reactions to things like heat, certain foods, moderate exertion, and alcohol - none of which I had a major problem with before.  

First off, really sorry that you went through all this. My TTT was similar except I didn't get so much of a rise in HR. My diagnosis was Neurally mediated hypotension. I also had to stop the test and felt really bad afterwards. It was the hardest test I have ever done. I have Afib and read a lot of Afib forums so I know that ablations usually raise your HR for a year or more. They can also irritate the c**p out of the heart and make it more reactive. There are also autonomic ganglia in the heart--I wonder if they ablated any of them? Having heard that this could potentially cause or exacerbate autonomic problems, I have held off on getting an ablation for Afib. 

While your test "looks" positive for POTS (definitely positive for dyautonomia) the fact of your fairly recent ablation makes it less certain as tachy is quite common for many months afterward. Many have said that the tachy was worse on exertion--so you may need to wait some more months to know whether you are officially potsy. 

19 hours ago, Super_tachy_1 said:

In any case, he did prescribe midodrine and I am supposed to start taking it tomorrow, although now I am scared knowing that my BP can actually get so sky-high under stress.

Midodrine can be a tricky drug. It should work like magic for me (and did for 2 weeks), then I got really scary high BP after a dose. My autonomic doc discontinued it for me. I tried it again recently (prescribed by my EP) but couldn't find a low enough dose to actually work while not rocketing my BP. So I'd just monitor your BP closely while trying it and perhaps ask to start with a low dose. Good luck with all this. It can be an alarming journey but most of us find ways to stabilize. 

6 hours ago, Scout said:

Do many of you have issues with walking straight and keeping yourself upright easily?

Yep, and it can lead to falls. Aside from the known balance disturbances of dysautonomia, I've discovered that strengthening my leg muscles is making a difference. There is an active thread on this: 

1 hour ago, Pistol said:

@Sushi - I did not know there was such a thing! I tried so many meds over so many years - I wish I had known that a test like that exists! 

@Pistol Yes, they took a cheek swab and tested my genetic pathways and correlated that with common pharmaceuticals. Then they sent me a document detailing how I would respond to different medications. It was interesting as some I would need about 4 times a normal dose, some I would need a half or quarter the normal dose and some I should never take at all. They also sent a wallet card listing the drugs I should never be given. These were entered into my medical records so that if I get treatment at my local hospital or with my EP or PCP, they will not give me those drugs.

3 hours ago, MeganMN said:

He wanted me to try Corlanor

Did you check the price and insurance coverage for the generic of Corlanor, Ivabradine?

3 hours ago, MeganMN said:

The Propranolol made it MUCH worse at a low dose, and at high dose made me Brady/Low BP. 

There are a lot of different beta blockers--each with specific actions, so when you see the new cardiologist, maybe you could discuss that. I had pharmacogenetic testing (ordered by my EP) and it ruled out one of the most prescribed beta blockers--so glad that I had that test or I could have been in trouble.

Have you tried taking enough magnesium so that there is no straining?

1 hour ago, MeganMN said:

I have at times Atrial Bigeminy and some Atrial tachycardia, all 'normal' according to docs. 

Not "normal!" But usually not dangerous either--just makes life difficult! These can be treated--ask to see an electrophysiologist. Since "rhythm" is their speciality, they tend to respect patterns like that more than general cardiologists. 

6 hours ago, racingheart77 said:

. Something I noticed in the past year is that if some one scares me or if I get excited too quickly I get a sudden pain go down my whole left( sometimes right) arm.

Just a note—not saying that this is causing your problem—but a doctor explained, at a dysautonomia support group, that the path that adrenaline takes is through the left arm.

2 hours ago, WanderWonder said:

The recommended is about 1,500 - 2,300. For people with POTS it's about 3,000 and up. I'm wondering if I can "cure" my POTS simply by getting in the recommended amount. Has anyone experienced that?

I doubt if you could “cure” yourself, but taking in extra salt generally helps dysautonomia patients. When you say “recommended “ amount, it would need to be the amount recommended for dysautonomia patients, not the general public. For individual recommendations it would be good to ask your doctor. I find that my orthostatic symptoms are much worse if I don’t load salt. Both my cardiologists have told me to do so as I have low blood volume that was documented through a procedure.

3 hours ago, p8d said:

@Pistol I completely agree on the fact that some increase energy and some drain it. I find that any, as long as it isn’t too intense/resistance/lengthy, helps. It took me years to find the balance between aerobics days (1) and rest days (2) or I would crash terribly.  I also had to back off on recommended duration and resistance.  I can’t seem to increase beyond 20-30 minutes of aerobic exercise 3 times/week no matter what.  I am now adding in 10 minutes of aerobics, treadmill, most days but if I wake up fatigued I take a day to just do strength training.  I still overdo it and pay big time, probably once a week but I am absolutely terrified of losing the ground that I fought so hard for.  I am supposedly doing a modified Levine protocol but that’s way too intense for me.  I started with it but had to find my own balance with my PT.  We are such fragile but amazingly strong people. Getting on the bike etc was/is so hard.

I also agree. Increasing my aerobic time by about 1 minute per week seems to be my limit now—but when I increase I don’t go from say a five minute session to a six minute session—rather a five minute session followed by five minutes of rest, and then a one minute session followed by five minutes of rest. Yes, can get tedious but I take a book! At the moment I am up to a total aerobic time of 24 minutes plus about 3 minutes on a leg press machine, stretching and a lap around the gym before and after the session. I am only able to handle two sessions per week as I need a lot of recovery time in between. I also use hand weights at home. I am also determined not to lose the ground I have gained. It has helped with overall stamina.

1 hour ago, p8d said:

It’s been, and still is, *extremely hard work* but I will never let myself get so debilitated again and exercise is key.

You said it! And not only is it extremely hard work but it is such a delicate balance between too much and too little. If we try this we are bound to miscalculate sometimes and “pay,” but I discovered the hard way how much I both need a reasonable degree of muscle strength and how much muscle strength helps with OI and general stamina. We are also going against the tide as the misapplication of “Graded Exercise” has created a common belief among many patients that ALL approaches to exercise are detrimental. Graded Exercise tries to lump us in with people who are simply deconditioned and pushes us too fast and with the wrong types of exercise with damaging results for those with dysautonomia. Leg muscles are vital to pushing venous blood back up but we have to be oh so careful in how we try to strengthen those muscles. Cardiac Rehab is 36 sessions in the States but that is just the beginning. I will need to continue working at this at a local community center gym and make it part of my life.

1 hour ago, lieze said:

Came across this article indicating the importance of load bearing exercise.

i hope it helps someone and I don’t mean to stress anyone. If you cannot get up I understand maybe you could try leg exercises seated or lying. 

I am doing a cardiac rehab program at a very good medical facility. They recognize and accept that I have NMH and that any standing exercises are not suitable for me. So I am doing only recumbent leg exercises, alternating between 3-5 minutes of exercise and 5 minutes of resting. With this routine I have been able to very slowly build up my leg muscles. The therapists add no more than a minute a week to my routine and monitor HR and oxygen after each few minutes of exercise. I'm thrilled that this is working as it is increasing my overall stamina and ability to stand. The key here is “slow” and that is something that most exercise programs don’t respect.

14 hours ago, Always_anastasia said:

I'm scheduled to wear a holter monitor

How long will you be wearing the monitor? The trick is to catch an episode on the monitor—then your doctor (are they an electrophysiologist?) can see what it is. And yes, an ECG an show a lot. I have a tiny ECG device (a Kardia) that I always have with me so that I can record anything weird and email it to my EP.

14 hours ago, Always_anastasia said:

Last weekend I was short of breath my heart felt like it stopped and I passed out

This is the sort of thing it is great to catch but of course it may not happen again during your time on the monitor. There are many things that could cause this though one I hadn’t known about was a “pause” of a few seconds. The first time I noticed one it really was frightening. I was wearing a Polar HR monitor at the time and it clearly showed something happening but I didn’t know what it was until it was caught on a monitor. When my EP “caught” she treated it appropriately and it was a huge relief.

And, as @Pistol said, the next test would often be a TTT which can also give a lot of important information. Sometimes, if the monitor points to it, an echocardiogram may be ordered. It sounds like you have taken good steps and hopefully you will have a much better understanding of what is happening. Best wishes—the uncertainty and fear that can accompany these symptoms are difficult.

I see two kinds of cardiologists—an electrophysiologist and an interventional cardiologist. The interventional cardiologist measured my blood volume (during a necessary invasive procedure)—it was low. I have neurally mediated hypotension and go into pre-syncope when standing. Both cardiologists told me to load salt and yes, it helps.

Can you tell us more specifics? What has your doctor prescribed? I have Afib and the difficult thing with natural remedies is that you don’t know how much of the active ingredients you are getting. For preventing or stopping an episode of Afib, this is not as important as it is with anticoagulants as it either prevents or stops the Afib...or it doesn’t. But the primary danger of Afib is stroke and with a natural remedy you don’t know if it is doing the job until it is too late. The seriousness of stroke has me taking one of the new generation anticoagulants (Eliquis) simply because there are many studies on their effectiveness and exactly how many mg are needed.

There are two types of remedies loosely referred to as blood thinners—anti platelets and anticoagulants. For Afib you want an anticoagulant (aspirin, for instance, is an antiplatelet). For preventing or stopping an Afib episode you need to know the properties of the remedy and also it’s effect on BP and HR. It is tricky! 

I have a medical cannabis card and find, for me, it is really helpful for certain things—Indica salve for pain and an Indica edible for “rescue”—those times when you overdo and feel like you might not make it. The rescue aspect works for me like nothing else. I only take a very small amount—never enough to feel high. But, we are all individuals so what works for me may not work for others. Saliva is probably the strain to be careful of as it is stimulating for most.

19 minutes ago, kisekis said:

So are you saying they arent telling the truth? Cause in their website they said they experienced in it and can/have helped many patient, also from online consultation and give record review and detailed report.

She says on her site that she would need to review your medical records and work with a local doctor—so it looks like you would need to find a doctor who is willing to work with her. Telemedicine is great but requires a local doctor to carry out the specialist’s recommendations—that is why I was suggesting ways to get a local doctor to help with this.

25 minutes ago, kisekis said:

For more than 16 years im struggling to find doctor who can help, still no 1 acknowledge pots, mcas, eds, etc in my country and also hard to find around my country. And ive been tortured and lost my life since 11 years old. And now im almost at dead end. So im desperate. I lost ideas and things are getting worse&worse eventhough i tried everything, my best.

You are not alone in this. No matter what country patients live in, they usually have similar stories. It was my story too for many decades until I found a dysautonomia specialist. But even then, he could only deal with symptoms, not the root of them. I still have most all of the dysautonomia problems—though, from forums like this (as well as the doctor I had) I have learned practical tips that help to deal with them. Sadly, we are still a long way from cures.

I don’t know if this is possible with a clinic in the US as, legally, doctors have to see you in person for the first visit. And, they would want to do testing. Can you tell us what your specific goals would be for an online consultation? As most treatments for dysautonomia involve medications, that is also likely to be a problem as doctors, at least in the US,  cannot prescribe medications without seeing you in person—except in some very specific circumstances.
 

My guess is that many if not most of us here work with our local doctors who are not specialists in dysautonomia—this is because there are very few specialists. But many of us do research online, print out research articles and take them to our local doctor as evidence for them to give us testing and/or prescribe the medications that have helped others. For instance, it might be possible for a local doctor to do a “poor man’s tilt table test” in their office to get a basic assessment on whether you have POTS, neurally mediated hypotension etc. This takes no equipment but a blood pressure machine. I had my local doctor do this and it is now in my medical records and provides a justification for prescribing medication.

Just to say, you are not alone in the problem of not having a dysautonomia specialist—there are very few in the world and many of us find ways to work around this, as described above.