Sushi

Could you say more about what you would like the meds to do? A resting heart rate of 66-68 doesn’t really sound like a problem. If you took a med like a beta blocker during the day, it would probably lower both your HR and your BP, but you are not out of the normal range and many find that beta blockers also reduce their energy. I don’t understand how that heart rate itself would account for your symptoms. You mentioned that you had had a virus recently I believe? Perhaps that is involved. Good luck!

Thanks for telling us about this doctor. Could you please tell us more about what he treats and what methods he uses, and share his name and how to get in touch with him? Thanks!

Have you ever tried strategies to boost the sympathetic nervous system--sorry I don't know your history. Strattera helped me enormously by increasing norepinephrine in the synapses. Only a small percentage benefits from this but they are often overlooked.

It can also be diagnosed during a heart cath by a clever interventional cardiologist--that is if you are getting a heart cath anyway for other reasons.

I have low blood volume with Neurally Mediated Hypotension (non-POTS) and the low blood volume was verified with testing.

I asked that—likely from some injury. I did have a few blows to the head early in life.

I also have a host of problems that are just on the left side of my body. I am seeing an osteopath who has found misaligned bones in my skull on the left side that may be causing my problems. Fingers crossed!

I have a genetic variation that makes metoprolol unsuitable for me. It is a common one (CYP 2D6) and makes me a poor metabolizer of many drugs. I thus take propranolol instead. Can you ask you doctor I’d you could try other beta blockers or a calcium channel blocker like Diltiazem?

I’m not sure what the rationale is for starting with extended release. I would think that testing your response with immediate release dosing would make more sense, but of course I am not a doctor. I take 10 mg twice a day and, for me, it doesn’t affect my BP much, but everyone is different. You can take the immediate release tablets every few hours so that you don’t get a treatment gap. Then he could experience with different doses. Then, if propranolol suits you, he could switch you to extended release.

Here is the thing: when you get lidocaine as a local anesthetic by default it will contain epinephrine. You have to ask for lidocaine without epinephrine which they are usually happy to do though it requires a bit higher dosing. I also learned this the hard way but now and careful in requesting lidocaine without epinephrine. They put in epinephrine as it makes the lidocaine last longer and also reduces bruising but I have had major procedures like the surgical placement of a pacemaker with just lidocaine.

I saw it in February so it must’ve been in the final season.

Many of us watch this British TV show that is also broadcast on PBS in the States—a curmudgeon but a brilliant local doctor saves the day with diagnosis and treatment of puzzling cases. The patient was refreshingly male and of course I diagnosed him before the Doc! Doc Martin gets B + though as he explained it simply and immediately gave the fella electrolytes. His prognosis was a bit rosy though. Still, public education on POTS!

In my experience they are likely to use propofol. I discovered that while it takes me a few days to recover from a higher dose of propofol, I am fine with a low dose and I now ask the anesthesiologist to administer that lowest effective dose for procedures like a colonoscopy where they only need me to be “out” for a short period of time. I also ask that they start IV saline as soon as I arrive. Best wishes!

Yes, really huge effect in daily life as I no longer even think about how long I will need to stand to do things like make a meal or stand in line at a store. Evidently, ablating these ganglia promotes sympathetic function. I wish that more of us could have this treatment but there will need to be a lot more research for it to be available through insurance, as mine was. I do exercise most every day but with great care. I have learned to “snack” on exercise—5 or 10 minutes at a time and keeping my heart rate fairly low. This way I am able to avoid PEM yet keep some level of muscle strength. For instance a 10 minute bike ride about twice a week, some yoga poses here and there during the day, 3 or 4 minutes of resistance-type strength exercises scattered through the day. Were I to do it all at once, I think that I would get PEM. I do think that the ablation also gave me more stamina as well.

Like a few others, I can be upright all day, though mostly sitting. I only have to lie down if I have seriously pushed past my limits. I do need to wear compression knee socks all day though. The big change for me was having a cardiac ablation for Afib, as they also ablated the autonomic ganglia in the heart as they are a source of Afib. So the Afib ablation was also a cardioneuro ablation and afterwards I could stand up for 45 min to an hour. Before it was 5 - 15 minutes.