SeattleRain

Thanks for the responses everyone. To answer some questions: I've had a ZIO patch, holter monitor and stress echo - all of which came back generally normal. I don't trust the first cardiologist at all so his interpretation of my stress echo is taken with a grain of salt. I'm unaware if my new cardiologist was able to give a second opinion based off of the ultrasound images or the "report" with estimates. If it's the latter, that's another reason I would like another stress echo (it's been 9 months anyways) or other imaging techniques that show my heart. One of the POTS causes on DINET's list is "Nutracker Syndrome" which I believe is diagnosed with an MRI? Anyways, there seems to be other heart related issues that are diagnosed with other imaging techniques - not with stress echo. The paranoia in me thinks I have some medical enigma where my valves or heart doesn't work right at certain times so they can't pick it up when I'm not having these "attacks". My symptoms aren't just tachy/brady/BP fluctuations. The most concerning is like this sliver/air bubble feeling in my heart, or like there's an infected cut somewhere on my heart that blood is leaking out of. Then when it gets really really bad I'll get a horrible STABBING palpitation thump that seems to try and correct whatever's happening. I have these attacks lying down mostly. Standing up I get tachy but often can be just the opposite. Another part of me thinks I could have ruptured something or bleeding internally, leading to low blood volume and my symptoms.

My doctors want to nudge me into this loose, suggestive diagnosis of autonomic dysfunction/POTS based on my TTT. The problem is, I'm convinced it's something else. Has anyone here had a chest MRI or CT scan to rule out heart problems? I'm convinced it's a problem with my heart. The only thing I've had done in this regard is a stress echo almost 9 months ago referenced by a cardiologist who I don't hold a very high opinion of. Can anyone suggest tests that would rule out heart issues (not electrical)? Thank you

I get muscle fasciculations all the time now. About a week ago I started getting them every day constantly in my left ring finger. I'll get them on my bottom right eyelid, my upper left back and under my right knee if I was really active during the day. It's really annoying and makes me wonder what's going on. I've read some things about bacteria that can cause it (like lyme disease) and that's a concern (I guess everything is when you have no idea what's wrong). Another common cause that seems to pop up is magnesium deficiency. I used to take a magnesium oil supplement regularly but after POTS I stopped every form of supplementation to see if it was something I was doing causing my problems... Anyways, let us know if you ever figure it out!

I quit in 2009. I feel like I would keel over and die if I smoked a cigarette right now. I find it amazing that anyone with debilitating POTS could continue that habit. That'd be the first thing I stopped doing. Not because of the nicotine but because of the plant combustion and all of the toxins they pack into them. I've read about non-smokers that use nicotine patches to help with lucid dreaming (causes extremely vivid dreams, apparently). That'd be really interesting to see someone with POTS have a positive result with nicotine supplementation.

What is your target heart rate supposed to be for your age/height/weight? For my stress echo my target heart rate was 185bpm. How strenuous does exercise have to be for you to get your HR up to that? You have an interesting story and I'll be curious to know what they find out and what other tests they do... keep us updated!

One ER visit showed I had low potassium levels. 2 days later I was back in and levels were normal. I eat several bananas a day now - they have a lot of potassium in them. Avocados and leafy greens also have a bit of potassium in them. You can look up the "Daily Value" for the foods you eat and see if you're technically getting enough.

I just use Himalayan crystal salt liberally on everything I eat. I'll make a salad with chicken, mixed greens, raspberries, avocado and carrots -- sometimes other stuff. I'll pour about a tablespoon of coconut oil on it then as much salt as I can without making it taste way too salty. One food I discovered recently for high salt/sodium is soup. I normally never eat soup but not only does it have a lot of sodium - you can add more salt to it and it still tastes great. So far, the soup has had the most notable difference for me. I can tell it's a bit more effective than just using my crystal table salt on stuff that I eat.

I get Muscle facculations with exercise. Like if I'm using my legs a lot, I'll get them in my calves. If I'm carrying something and using my back muscles, I'll get them a lot on my back...

How is sleep for you? Do you enjoy being asleep

You're definitely not crazy. I think a lot of us are going through issues like this so many here will be able to relate with you. There's a few people I know of here who are active and also have had neurological issues since childhood. If you don't like the path you end up going down with your cardiologist, find a new one. My first was horrible and a many of us here have been through multiple doctors. I also learned (at least in my case) that unless you have a "POTS" doctor, you'll want to do a lot of the research yourself and have a game plan for what you want to accomplish. The most important thing to my mind is knowing exactly what the problem is (and isn't) so you know what you're up against. Let us know how your follow up goes!

I read a lot of people here feel best at night and the mornings are the hardest for them. I seem to be the opposite and it's just another sign to me that I may not have POTS. Sleep is like a recovery period for me, the morning is alright and by noon (several hours after waking up) I feel at my peak for the day. Then, it's slow down hill from there. Within an hour of going to sleep I my symptoms become more prominent. My heart feels like there's a sliver in it or like not enough blood is going in. Just trying to figure out if any other POTS patients experience this and any ideas for what else I could try getting tested for beside the usual suspects.

Great to hear! What was the testing for the vascular EDS? Did your neurologist refer the test? What'd the test include?

Thanks for the responses. I just got a call from my cardiologist's nurse tonight. She left a voicemail saying their nuclear lab has stopped doing the blood volume test. They said they just used their last "kit" that's used for doing the tests, and that the company that makes them isn't shipping them out anymore. He said it's nation-wise. @#$@! I hope I can find another place that will do the test. I need it!

Also on the NE supine/standing - the Vandy research paper I read stated blood to be drawn 15 minutes supine, then 15 minutes standing. However, the nurse that scheduled the test must have read some other formal procedure for 30 minutes supine, then draw blood. I'm wondering if I should be adamant about the 15 minute time or let it go with 30 minutes. Any suggestions?

I followed up with my cardiologist yesterday and he awesomely agreed to do the tests I wanted. He/we suspect "Hyper" POTS because of my slight rise in BP. Has anyone else here had a standing/supine NE test, being suspected of having Hyper POTS, and have the test come back normal? Has anyone else here had a Total Blood Volume test? I'm really hoping the NE levels come back normal because I don't want a POTS diagnosis. I much rather this be something else that hasn't been caught yet in hopes of a real "fix" instead of just treatment.

I don't think anyone is going to tell you to cancel a trip to Europe! I'm sure as bad as the flight may be, the experience will make up for it. I know a nurse who can't handle flights very well because the reduced oxygen can trigger anxiety. If you struggle with that, it might be something to prepare for.

I'm from Minnesota/Wisconsin area and can sympathize. I live in the Western Washington area and love it. It's so beautiful and we don't get a ton of snow in the winter. Our summers aren't excruciatingly hot, either. I've considered moving to California - San Diego is perfect weather-wise but the cost of living is so high - especially with their income tax. Washington has no income tax.

Hope you feel better! 3 bags of fluid sounds so nice...

Thanks for the response, Issie. Where did you go to get tested for alopecia? Is that a visual diagnosis or do they do a biopsy of your scalp or what? Thank you

Sounds like the worst doctor ever. Wasting his time? Pfft. He's wasting YOUR time!

Has anyone here used this for hair loss? I had mild hair loss since 2010 but when my POTS onset came it became accelerated and is noticeable enough to wear I want to start treating it now. I'm using Norizal shampoo along with a HairMax lazer comb but I'm not sure how well they're going to work. I know quite a few people who use minoxidil based products and it works really well for them. I avoid chemicals like the plague but for vanity purposes I think I might have to be a little bit of a hypocrite. I am worried how it might effect my POTS symptoms, though. So, has anyone here used this? Had a bad reaction to it? Thank you

Another member here (I Hate Bananas) referenced this scholarly article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ I'm not sure if you've read it but it's a really great read that addresses the different types of POTS patients and the symptoms associated with them. My BP also rises when standing. You'll want to make sure to check out this pic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/figure/F2/ "One of the more striking physical features in the postural tachycardia syndrome (POTS) is the gross change in dependent skin color that can occur with standing." If you notice a big change in the color of your legs I think this would suggest pooling. To my mind all of your symptoms suggest pooling in the legs. Given that you have anxiety you may want to note: "The clinical picture of POTS can be confused with pheochromocytoma because of the paroxysms of hyperadrenergic symptoms."

After speaking to my cardiologist and his electrophysiologist, my chest pain is likely due to reduced blood volume/flow to my chest. I had significant chest pains towards the end of my TTT and can only speculate that it was due to the blood pooling in my lower half more and more as the test went by. I used to have chest pains while lying down which doesn't make as much sense but then again I'd get light headed while lying down, too.

Try going for 30 minutes standing still and see where you're at. If you can monitor blood pressure along with it, that may help. During my Tilt Table Test, I was normal at 5 minute mark. It wasn't until about 15 - 20 minutes where things started going down hill and at the 30 minute mark I was more than ready to be tilted back down.

Yes, my heart rate will decrease or stay the same when I'm moving. From what I've read, this is pretty common among people who have a problem with decreased venous return/blood pooling. When you keep moving, blood is forced to circulate, increasing the venous return and reducing the compensatory tachycardia response. As you stay still, blood pools, venous return decreases and tachycardia compensatory response increases. I'm pretty sure this is why my compression stocking helped my heart rate stay around 70 while standing still. You can get a pair for less than $10 on Amazon and if they help your heart rate, it could suggest that you do have a problem with pooling/blood volume/venous return. Have you stood up and stayed in the same position for any long duration of time? You could try a "poor man's" tilt table test where you basically just stand still and see how you feel after 5, 10, 15, 25 minutes, etc. I normally don't get light headed but if I stay upright for a long period of time then it sort of creeps in, like the blood from my upper body was very slowly drained into my lower half.