So glad you went ahead with the muscle biopsy. No matter the results, at least you'll know where you stand in this regard. Please update us when you get results.

The cardio tests for POTS is important. there are many treatment options for POTS, so again, good you have this coming up...as you are in need of some relief for your symptoms. Can you describe what is going on (cardio)? Do you have drops in BP upon standing? Did the cardio do any orthostatic testing (BP while laying down, sitting up and standing)? What about heart rate...any increases (racing with exertion)? And what about the opposite...slow heart rate?

Did they give you any idea of what tests they will be running...like tilt table, 24 hour BP monitor, holter monitor, etc?

Sorry for all the questions...just trying to get an idea of what you're dealing with, so I can offer suggestions. I have numerous (and severe) autonomic dysfunction and have learned over last 20 years how to deal with many of the symptoms.

Hi en bloc, thank you for all the info you have given me ref muscle biopsy, it did encourage me to go ahead. I fear I've made a mistake in that my tricep was biopsied. My legs are significantly worse but as I have developed strong weakness in the arms the surgeon said let's just go there. My symptoms are systemic so hopefully this isn't a bad choice. I was so worried about the pain and my leg pain is worse that I just went along with it. Will see what the results say.

Suggested cardiologist tests are tilt table, ecg, 7 day holter, cardiopulmonary exercise test. Think that's all. I can't tell what my hearts doing but it feels horrible. It's more than palpitations. I often feel it has missed beats and can feel electrical impulses almost setting it totally out of rhythm. Sometimes it's so severe I will jolt upright in fright and take a huge breath. My breathing pattern changes and I feel I cannot get oxygen in sometimes. This can keep me sat up awake all night. I get severe adrenaline rushes randomly which initiate feelings of overwhelming fear and impending death. It was so bad once I was sat with a relative begging to go to hospital and crying last week, I feel quite embarrassed about it all but it felt like I was dying literally. I laid down and focused on breathing and it calmed then. I don't know if my blood pressure is shifting on standing. It's always quite low and didn't seem to vary too much. I get chest pains and tightness and sometimes I can't lie down or on my side as I feel my heart can't cope in that position. It feels like my heart is struggling and not getting enough oxygen in. I worry that it's more than POTS to be honest. The cardiologist guy was at least fantastic in that he said docs underestimate how severe the symptoms can feel for those suffering autonomic issues. I really do hope for some meds to help this. I feel that my heart does actually go from beating way too fast to beating way too slow. I can't always tell what's going on. But I'm sure it alternates between the two.
My worst attacks which go on all night are if I do too much exercise like walking all day or if I ran somewhere. That would set things off for about 24 hours. Eating can also set things off. If I ate a lot in one go for example.

Because I am having fasciculations everywhere, even my neck, I fear this is what's happening to my heart,this is after all a muscle and all muscles are affected by something going on in my body. Sometimes when I'm twitching everywhere my heart jumps and jolts me upright. I try hard to just accept and not get frightened when it happens.

There are two horrid life limiting diseases that I think about and I want to know for sure I don't have them so I really hope I get some answers soon.

Thanks en bloc, it's great to hear you have managed autonomic issues for so long. Not that I'd wish that on anyone x

I completely understand that your heart FEELS like it is in bad shape...but I'd be willing to bet that it really is just POTS and other aspects of autonomic dysfunction. Most of the autonomic symptoms come from the heart...whether it be BP related, racing heart rates, slow heart rate, or cardiac vasospasms. These few things that can go wrong WILL have a huge impact on how you feel. Literally, you are lacking in oxygen (as you said) when your BP drops...because not enough blood is getting to your brain. This will make you feel lightheaded, dizzy, and can even make you pass out. it can also cause chest pain (even in the center of your back). The racing heart rate will feel like palpitations gone crazy...as it is not uncommon for those with POTS to have a heart rate over 200 at times. Slow heart rates are just as problematic as fast rates...just in a different way. You may feel run down, without energy, and also lightheaded. And lastly (but NOT least), the cardiac vasospasms feel just like a heart attack...because it literally can cut off blood supply when a large artery clamps shut in a spasm. this can last from a few seconds, up to a minute. It is an unbelievable feeling as the spasms can (and often will) repeat over and over so you feel as if it will never end. The symtpoms can be just like a heart attack with chest pain, left arm pain, neck pain, lightheadedness, sudden sweat, and shortness of breath. The symptoms are brief, but again, they can repeat over and over.

Thankfully, there are medications that can help all of these symptoms/problems (except slow heart rate), and get your heart working in better unison with the rest of your body. Slow heart rates cannot be fixed with medication...only a pace maker (IF they are slow enough to warrant such a device). The tests you will undergo will help determine what is happening.

I'm so glad you are having all these things addressed. Stay positive that they will find out exactly what is going on and fix it for you.

Thanks en bloc. You describe it really well. It's of some comfort to know that the symptoms aren't reflecting heart failure, even though it feels that way. You mirror what the cardiologist said in that the symptoms are extremely dramatic. It's of comfort to know that there are options for slow heart rate too. I recall you have a pace maker. It sounds frightening to have that. Does it give you comfort to have it? I would love to know how you have managed with this for so long.

I'm so grateful to have this group. The mental and emotional loneliness of this sort of thing is excruciating at times.