MTRJ75

I've watched the exercise presentation twice, downloaded the CHOP exercise program from the link provided, read the entire thing, got to the actual workout calendar...and have no idea what they're talking about where it says "3 min Base Pace". I'm hoping this is mostly stuff I can do at home and don't need a gym or therapy center for. Two of the more interesting things from the lecture: How constant slouching can cause vision issues (which I mentioned in another thread) The therapist basically said that it's impossible to succeed with an exercise program if mast cell issues aren't under control.

The bolded part is my main concern with all of this. Otherwise I'm over even caring the hows and whys of it. Will it make it harder to convince future doctors I need more than psychological treatment?

I have blurred vision frequently, especially after being physically active, but I've also realized that my eyes will dilate slightly without cause. I'm now much more sensitive to light as well. I realized this when the eye doctor dilated them and I noticed it was an exaggerated version of what I'd been experiencing. I just finished the exercise presentation from the 2020 Dysautonomia Conference where the therapist mentions that posture and positioning in the neck can be a major cause of vision issues. Pretty mind blowing and (pardon the pun) eye opening stuff. I'm now wondering if it's something that can be rehabbed as I've never had any vision issues prior to autonomic dysfunction a few years back.

After speaking to my lawyer, it turns out I don't have to really worry about this because he's found out that the medical expert is a MENTAL health expert. It seems like the judge is unwilling to grant physical disability and wants to treat the dysautonomia as a potential mental disability. If I continue to try and push the physical aspect of the disability, I likely won't get anything. Perhaps my best shot is to say "Yes, I have anxiety when my heart rate is sitting at 200 with skipped beats at rest and yes, it's extremely depressing being trapped on the couch all day."

I guess...I hope @Pistol I'll report back in if I don't make it. She kept mentioning an EP too yesterday and it didn't hit me until I was lying in bed last night that she was talking about an electrophysiologist.

Not neuropathic POTs, my neurologist diagnosed autonomic neuropathy in addition to POTs (and CFS/ME). It's written that way in the disability paperwork or I wouldn't have even seen it and asked. I thought auto neuropathy was just another way of saying autonomic dysfunction, but it's apparently it's own thing. Cardio said that if SVT and only for a short while, it's not dangerous. If it goes on longer than 10 minutes or goes out of rhythm get to the ER. If it happens again, try to catch a recording. If not, we'll try to do a monitor, but will be tough to catch. May have to do a loop recorder. The thing she would worry about is ventricular tachycardia and without catching it on record, she can't tell. She did say, as I wrote above, that having a normally structured heart on MRI is good, but that tells us nothing about the electrical or nerves. She's hopeful that the new meds to stabilize mast cells might help with cardiac issues as well. She's also going to get me some samples of Ivabradine. It might help to get it insurance approved if I can show them I've already benefited from it. But right now, it's really just something else to worry about on top of everything else.

So while I've been waiting for the cardiologist to call later, I've been consulting Dr Google and reading some wonderful things about how autonomic dysfunction is correlated to cardiac sudden death by causing these arrhythmias, especially autonomic neuropathy which I've been diagnosed with. I've also read that the problem may be fixable by ablation, but those have a low success rate in people with dysautonomia and can even worsen POTs. On the other side, I've also read that SVT may not be dangerous or even need treatment, if that's what it is, but that's often when it happens in much younger people. My body doesn't seem to be satisfied unless I'm living my life in fear. Hopefully, I can avoid sudden death until my cardiologist appointment later. Edit: I did have a cardiac MRI just over a year ago (Dec 2019) that showed a structurally normal heart, but I don't know if that matters in these instances when the electrical system is all mixed up.

Luckily, I have a tele-med appointment with cardiologist tomorrow, but this is such an odd pattern. I have twitches all over the place all the time, so I wonder if this is a muscle or nerve twitch that's setting off the cardiac system. I wouldn't expect them to catch it on monitor. It hasn't happened every day and even when it has, it's gone before I can set up Kardia or a heartrate monitor to record it. The shortness in length is good news I guess, but you only have to lose once.

Some long time members know I've had a few threads about PVCs or skipped heartbeats. What I've experienced now a few times over the last week or so is a bit different. It's like a short 3-5 second stutter in the chest (maybe a PVC due to trapped gas?), but then a REALLY fast heartbeat for about 10-20 seconds. It's not usually long enough that I can catch it on a monitor before it goes back to normal, but it feels incredibly fast, like at least twice the normal rate and it's definitely a sensation I can physically feel. I often get the skipped beats, but the stutters (or maybe it's even a twitching) and especially the following super rapid following heartbeat is something new. Is this something I need to worry about or a common issue here?

I've been thinking about this whenever someone bumps an older thread. Some of them are five or ten years old and populated by posters I've never seen before. My assumption is that a lot of these people have improved to the point they don't even want to think about this place anymore. Is it possible to seek out recovery stories from some of these people? (I'm choosing to be positive and assume that is the case in most instances.)

TY. Looks to be about $80. Obviously, going to try the case manager with the Ins Co first. There must be an amazing appreciation for life to go from bed bound to freedom while still at a young age.

This type of reaction is certainly what everyone here fears. My neurologist had been on the fence, but just this week advised me that he hadn't been seeing many of these types of reactions. Here is a blog on some potential precautions to take for your second dose: https://www.healthrising.org/blog/2021/01/03/chronic-fatigue-fibromyalgia-experts-coronavirus-vaccine/ Hopefully this wears off quickly for you.

My lawyer had my neurologist fill out a form. This was done right in front of me. I thought that his answers would get me an easy decision. He basically said that I can't even sit up for very long on most days. Wasn't enough. I haven't gotten to the point of praying for death, but I've certainly reached the point where I don't care and want this to end one way or the other. On the one hand, I'm thankful I don't have a family that I wouldn't be able to support. On the other hand, I really only have help with meals (thank God!), which makes things a whole lot harder. If I can't drive, I don't get there. If I can't clean it, it doesn't get clean. If I can't do it, it doesn't get done.

NJ Does everyone have a case manager or do you have to request one? How does that work?

This little rant must have activated something in my brain because I temporarily felt a bit better afterward. I felt like having the hearing over the phone was a blessing because it meant I didn't have to travel. The downside was that the judge wasn't able to see me physically and I couldn't collapse right in front of her in the court room. I fail to see what additional information we can provide her. If the so called medical expert answers questions like most doctors I've encountered and undermines the physical seriousness of my condition, I may lose it in court. I'm going to request that my lawyer really attempts to discredit them via their likely lack of understanding regarding dysautonomia.

This is a rant post. No need to reply. Had a very bad physical day yesterday. My worst in a while. The good news is that I've been able to gently nudge the neuro in a direction I've been wanting to go with medications for awhile since nothing else we've done has worked to this point. Lots of physical cramping last night, but I was able to sleep eventually without excessively medicating myself. Minor victory. Woke up feeling tolerable today, which is as good as it gets. I spent 10 minutes outside with the dog on a nice day and now I can barely hold myself up to type. EVERY SINGLE TIME I feel like I can do something very minor and physically normal, I nearly end up in the ER. EVERY SINGLE TIME! I'm at the point (not even getting to anymore...AT the point) where I'm so sick of being stuck on this couch that either I'm going to overcome some of these challenges soon or this condition is going to have to kill me trying. There are things that need to be done and nobody else is going to do them. I'm depending on my mother (now entering her late 70s) for most of my needs including food preparation. There's a life outside the solitude of this couch that needs to be lived. Oh, and the insurance is denying Ivabradine and Clarinex prescriptions. That's another fight I'm going to have to store up energy for. Yet, with all of this, I can't even convince disability that I can't function normally. Second hearing scheduled for next month where they're going to call in a "medical expert" that very likely knows nothing about dysautonomia and I'll probably react in a way that will be detrimental to my case due to the frustration. Expert just doesn't mean what it used to anymore. Now days, anyone with an opinion is an "expert". What would happen if I just decided to keep pushing and refused to let this disease keep me on my back? I've never actually passed out yet. If I can no longer stand, I'll collapse on the floor and then get back up. My hands and arms are in agony just typing this. But what if I just choose to ignore it all and do until my body just stops doing? What's the worst that happens? My heart decides to stop and then nobody has to hear me complain anymore? That's it. End of rant. Feel free to add your own, ignore or respond with the secret cure to all ills.

I went in with all of the notes from the DI conference presentations and neuro is now agreeing to try to treat potential MCAS (with Clarinex) and also agreed to a trial of LDN as a possible next step.

I believe Innate/Adaptive is actually covered in the Autoimmunity in POTS presentation.

I've found that I do the same on a low dose (10-20 mg once per day) as I did on a normal dose (60 mg). I believe there's literature somewhere about low dose beta blockers being more beneficial in POTS too, but don't remember where. https://www.google.com/search?q=low+dose+beta+blocker+for+pots&oq=low+dose+beta+blocker+for+pots&aqs=chrome..69i57j33i22i29i30.5252j1j7&sourceid=chrome&ie=UTF-8

The encouragement that there are answers out there is one thing that keeps me going. The frustration of finding doctors who will listen keeps it a struggle. One thing I've noticed about some of the best presentations so far are that these "specialists" are multi-system oriented. Dr Pace is a neurogastrologist. Dr Goodman is a neurologist who commonly deals with autoimmune conditions and says he rarely even refers to rheumatologists anymore, if ever. This is certainly what dysautonomia sufferers. need, these multi-faceted specialists. Unfortunately, I don't have access to any of these doctor types.

I don't see why they wouldn't share if you e-mailed them. It was free after all and they eventually end up sharing most the videos on Vimeo most years anyway. You can see Dr. Goodman's 2019 lecture on Sjogren's + Dysautonomia with a simple google search (though I'm having some trouble posting here).

Just watched Dr Goodman's presentation on POTS workup and it was so good that I printed out half the slides and plan on showing them to my neuro next visit. It was so good, I went back and watched his 2019 presentation concerning Sjogren's and Dysautonomia. For those of us with autoimmune components or suspected AI, he really gets it. After listening to him, I feel greatly encouraged that there are people that understand the what I'm going through. I just have to figure out how to get in front of them. At the very least, I have more information (even overwhelmingly more) for my doctors going forward.

Bumping this older than I thought thread because I've really been having a lot of fun the last two days. Allergies have been bad with ears clogged and nose running constantly, but the worst is the constant need to clear the throat, which seems to be screwing up my cardiac nerves too. I've had a few instances of not only single PVCs or blips, but a stuttering feeling in my chest that coincides with a tug in my throat that takes my breath away for a couple of seconds. It's like my heart is trying to beat, but something is stuck in wires, preventing it. Haven't been able to catch this on Kardia, but of course the anxiety becomes what if the stuttering becomes prolonged and whatever is causing the disruption causes a stuttering or stoppage that's long enough to be considered an emergency situation. It sounds funny, but I can compare a lot of my symptoms to what it feels to drive a beat up, old car with all the stuttering and vibrating/shaking. Sometimes, when the wires stop working correctly, the car just stops. I don't know how many times I've been reassured that this can't happen to the human body, but it always feels like it can. This entire mess in my chest has just been terrible this week.

This is a certainly a loaded question because the answer always seems to depend on what I'm feeling in the moment. I'll start with maybe safe and proven exercise methods. If possible, maybe common questions about some of our worst (or most concerning symptoms) answered by experts in the field (since most of us don't have access to doctors who even understand the condition). Maybe also printable information about the condition that we can bring to our doctors that might explain things better than we can.

I've been watching these at a pace of about 2 per week and a lot of them more than once. Just fnished Dr Pace's talk on neuro-gastro issues in dysautonomia. It was fantastic, as most of them have been. There are a lot of questions I'm going to be be bringing to both my neuro and gastro stemming from this. She even talks about being able to discover mast cell activity from past endoscopies (if I understood it right).