RecipeForDisaster

Unfortunately, I have found that doctors get very defensive or arrogant when they are wrong or can't figure something out. It seems to make them very insecure. I have had several experiences like this. I'm in a similar boat. I seem to have dysautonomia but not POTS and it has yet to be nailed down.

I take 25mg extended release metoprolol at night. It helps, no doubt, with the pounding and tachycardia. If I take another 12.5mg, which helps more, my heart rate goes to about 50 and I get a lot more PVCs when that happens for some reason. It's strange but enough to keep me from doing that even if my cardiologists tell me to take extra if I need it. I just hate the feeling.

I just got some cooling UPF 50 arm sleeves-they are wonderful! They have that feature where you wet them and they feel very cool, plus they are compressive and protect against the sun.

I wonder if you see Dr. Novak because I am also treated in Boston and he told me he had another patient just like me (a woman from Hawaii) who he never did figure out. I appreciate his honesty but it was not inspiring! I also have a non-specific diagnosis and am not sure about it, but I am fairly certain it isn't POTS. I'm in my 30s too but have been sick for a long, long time. I passed out in my early teens "for no reason" and honestly thought it was normal. I have horrible sleep problems as well. I have had a lot of nights just like that, waking every hour, giving up at 2 or 3 am because getting back to sleep is just too hard to yield only another hour of sleep. Metoprolol has helped a bit because my pounding heart is the most difficult symptom to sleep through. You might look into sleep apnea testing-I have that and CPAP has helped somewhat.

It doesn't make me nervous at all, it just highly distracting and annoying, particularly if I'm trying to sleep. I think a lot of doctors assume you're mentioning it because you think it's dangerous... not in my case. So, to them, it's usually like "well just ignore it since you know it won't hurt you" and I want to say "there's going to be an elephant tapping on your chest from now on, just get used to it"

This is true for me also. I never had noticeable or forceful beats before I got sick. I have been kept up all night many times. The stress hormone theor sounds like a good one!

I don't believe you should be able to see your heartbeat through clothes, or even see it in your chest unless you're pretty thin. Of course you can feel it in any person but I think we are talking about heavy duty, attention getting thudding.

Now I always plan on getting a bag of saline after a big blood draw (my hematology visits usually cost 15-25 vials!) because it ruins me for days too. I just can't afford the volume loss. With me it's not the needle either, I'm good with needles and never have issues with IV starts. A few vials drawn is okay too.

I was doing worse in the office than my previous. My BP was actually lower too. To me not much is worse than going around with very low BP unsteady on my feet and not able to eat or sleep... I'd actually rather have some times where I'm on the floor than a solid five day period of this. I was miserable. Believe me, I celebrate being able to walk a quarter mile more than I could before... little wins! But this day was a fail.

My laptop screen bounces along with my heartbeat. I'm always told to just ignore it but if you are getting bumped hard all the time, apparently, it's not something you can get used to. It doesn't make sense that a hypotensive person has such a pounding heartbeat until you think about a heart that is mostly empty (which is how I feel, that I don't have any blood) smacking each beat out. I'm completely undiagnosed by the way. Interesting findings come up with vitamins, hormones, positive ANA, etc. but no answers, still. Two TTTs, one done totally wrong (painful biopsy during it!) and one at the beginning of my journey when I was doing a lot better I doubt I'll do a third, I'm getting dysautonomia treatment anyway and it sure sounds like that's part of it.

@WinterSown maybe my story was confusing-I don't mind at all celebrating with doctors when I'm having a good day-during this particular visit i was doing much worse than usual an drew having a very hard time getting through almost a week without being able to eat, with no help for that. If my baseline was a 5/10 I was at an 8/10. Yes, I wasn't on the floor, but suffering a ton and not able to do anything. So to say "glad you're doing better" when overall I was doing a lot worse...

This reminds me of several months ago when I was finally on all the meds I'm on now, minus the saline.... I had a 5 day time where I wasn't well enough to eat and was very weak, nauseous, and wobbly, BUT I hadn't completely passed out since starting all of the meds. I was having quite a bad day and tired of trying to force myself to eat when i wasn't up to it. The cardiologist said "glad you're doing better ". ??? Not passing out is not removing my whole issue, people!!

Anyone who felt worse on cyanocobalamin could always try sublingual methylcobalamin. It really can't hurt and might safely replenish your levels. I went from 120 to 1440 with just sublingual. That is really similar to direct into the bloodstream. I only have minor numbness and tingling now, and I don't know if that is my neck/shoulders or neuropathy or B12 but it's livable. The cyano part can't always be cleaved off for you to use the -cobalamin, which is more common than previously thought. Somehow that makes you feel like you have - no- B12 because the cyanocobalamin takes up a receptor without being useful-something along those lines. It was horrendous for me but many people tolerate it just fine. Whenever I'm out, I wear sunscreen, so I wasn't surprised my D was low. I was on 50,000 weekly for a while and am now taking 2000-3000 daily because I think this form of vitamin d is better. I have a very good diet, too. Just no meat. @dizzytizzy my tachycardia is always worst at 2-3am but I go to bed pretty early and normally get up at 5:30-6am, so maybe I'm a little off? The pounding is so awful that it doesn't matter what my rate is. I think that part is not understandable by my doctors. "Oh your heart rate is in the 80s, that's good"! But I can literally see my heartbeat through my clothes.... I had ACTH stimulation test but it was done at 4pm so who knows if that means anything. It was okay. My renin was high and my aldosterone was 7 sitting up in the morning. I'm waiting on my vasopressin results... the endocrinologist, years ago, sad I was all set on his end, but I'm worse now and he's mysteriously not practicing now. I'm not so sure.

I had that abnormally high for me overnight/sleeping heart rate before metoprolol too. No one thought it was a problem because it was only in the 90s but I normally run in the 60s when I'm not active... and it's hard to fall asleep otherwise! i think most people with seriously low B12 feel worse after starting to supplement because the nerves are waking up again. I learned about the inability to use cyanocobalamin online and then from a doctor because I only got worse and worse from cyanocobalamin. It was actually unbearable, pain, numbness, pins, and needles worse than ever, never letting up. My levels were coming up (that doesn't mean you can utilize that B12) and we found that the cyanocobalamin was blocking my body from being able to utilize the B12 it had, or something like that. I never had worsening symptoms with methylcobalamin.

It stunk for me because the shots and nasal spray made me so much worse. I definitely can't utilize cyanocobalamin (makes my deficiency make even more sense because food is fortified with that form) and it's very difficult to get another form as an injection or other route. My ferritin and vitamin D were also very low. It's interesting how many of us share these. With each discovery I hoped we found something treatable that would fix me, and I think increasing my levels did help, but they didn't give me more than 20% improvement if that. I wonder if I have other deficiencies-I don't think it's my absorption that's the issue because my iron saturation is easily maxed out with pills... I don't have trouble with food/protein and am not that thin. The iron and B12 might have been diet related since I haven't eaten meat in almost 30 years.

I knew about my severe B12 deficiency way before I went down the dysautonomia road. I was almost excited when they found it because I hoped it was the key to fixing my issues. I tried weekly shots but I got worse because not all of us can utilize cyanocobalamin. The same happened with the nasal spray. Sublingual methylcobalamin in high doses brought my levels up.... I got better in some respects (numbness and tingling, mostly) but a lot of my issues are just as bad now. I was low for many years, being vegetarian and probably also having a lack of intrinsic factor (hereditary, I have pernicious anemia in my family-that means you can't absorb B12 through your stomach). It took my primary way too many years to think to test my B12 i do think a potential cause of my dysautonomia is having low enough B12 to cause nerve damage. Of course no one can tell for sure.

Normally other labs are done, too, like iron binding capacity and saturation. That way they can tell if you have it on board, can absorb it, etc. In my case I can see that my saturation is high, so I am absorbing it okay... just not enough or I am losing it. Ferrous sulfate isn't the best (easily tolerated and absorbed) form but I tolerate it and absorb it okay, personally. i do think PPIs would make it harder to absorb iron (and a lot of other nutrients). i guess I will let the hematologist go for the infusions next time-good to know.

Not anemic but also had very low ferritin at 6... can't get the level above 40 no matter what (325mg ferrous sulfate 3 times daily with acidic foods and no coffee) and wonder if I should do the IV form. I hear the infusion makes you feel really sick... but I'm curious whether increasing my ferritin would help me feel better.

Interesting... I am also vegetarian and had very low vitamin d (11), b12, (120), and ferritin (6). I do think the extremely low b12 might have caused my potential autonomic neuropathy (I had horrible symptoms at first, paresthesias, etc.) but what does that change for me now? After heavy sublingual b12 replacement my levels are fine now. I did shots for awhile but the form I need (methyl, not cyano) is not available that way and sublingual works fine. Ferritin is still an issue... i got to 53 in 2016 after taking 325mg 3 times daily for a long time, but I'm stuck at 40 for the past 6 months and can't get it higher. My iron saturation is almost 100% so I might have to get iron IVs which are not supposed to be fun. i have not, honestly, seen much change after increasing my iron and vitamin D levels... maybe they aren't high enough yet. I am disappointed because I keep thinking I have found something that can be fixed and get me feeling better. I was suspected of malabsorption as a reason for these deficiencies but I don't think I have it. Pernicious anemia runs in our family (no intrinsic factor means I can't absorb b12 from food) , and I wasn't supplementing any of these. My diet is really good although I don't always feel like eating enough. I eat vegetables, whole grains, and clean protein most of the time. I wear sunscreen which would explain the low vitamin D.

That's interesting, I get this too. It's like I'm just too weak to talk. I never connected it, just thought it was one of my weren't features that sometimes I have no voice for no reason.

Yes this is one of my worst symptoms. Metoprolol dulls it somewhat, but I also have a lot of annoying PVCs that get worse if i take more than 25mg. My usual palpitations are continuous and very annoying when trying to sleep.

Yes, I have no diagnosis, but I almost always feel this way. Sometimes a cocktail of meds and compression will alleviate it to an extent, but most powerful is a liter of IV saline. I am pretty well used to it, but it IS distracting and it worries others when I collapse into a wall, am wobbly, etc. knock on wood, I haven't actually passed out since I have been using these meds and fluids. i used to be quite athletic-gymnastics, figure skating and hockey, basketball, horseback riding from a young age. Now I try to keep kayaking, horseback riding, and hiking as much as I can, but it's a whole lot harder to keep going even though I am still fit. I cannot develop any stamina whatsoever no matter how I train (and I should still have it from a lifetime of exercise). I have not been bedridden or anything, I have always pushed through and kept ant it even if it meant being passed out on some trail 6 miles from my the car (been there).

Yes, I'd be very curious about my blood volume. Hopefully I can get the testing done. I do have some clear dysautnomia symptoms but not a particular pattern for diagnosis. I have awful temperature regulation and sweating, for instance. Maybe that's just from being in shock? Hypovolemic shock would explain a lot, really.

Salt and water didn't help me enough, midodrine is somewhat helpful, and so are compression stockings and mestinon. IV fluids help more than anything but I haven't been able to feel OK in years despite all of this. I think that's true of me also, my BP is just baseline low for "no reason" and that's responsible for most of my problems. I used to be hypertensive as a teen and into my 20s so I don't naturally have a low BP and do okay with it, as some do.

I have very similar symptoms! Metoprolol does help me somewhat without lowering my BP. I hope you get it figured out-I would love to know how it goes! I haven't tried florinef either. My neurologist said he had a patient just like me, who came from Hawaii to Boston for treatment. He couldn't figure out what was wrong with her either