Some More Questions For Those Diagnosed.

[Statix]

Hey everyone, I hope everyone is having a great day! I haven't been able to make it to my doctor yet, but I have some more questions if you don't mind answering them.

First, does your heart rate decrease as you start moving? I find that when I first initially stand up, my heart rate will increase between 30-40 bpm, but while I am still feeling my heart, I will notice it slows down a little bit (maybe 5-10 bpm) when I start pacing or walking around. Is this typical for someone with OI?

Also, this is a little hard to explain, but I have had anxieties since I can remember. I am now agoraphobic, so it's hard for me to get to the doctor, especially now that my anxieties have increased significantly since experiencing these new symptoms (I have been dealing with the increase in HR with standing for a little under a month now). If you have read my other posts, I mentioned that as the day progresses, my RHH and standing HR will decline, but will still have the same 30-40 BPM on standing. The weird part comes with my anxieties. As I have already said, it seems my anxieties have increased since having these symptoms, but I have noticed that when the increase in HR standing is a higher jump than usual, I actually DON'T have anxieties during the attacks. This seems weird to me. Today, my standing HR was 141, which is higher than it usually is (120-130 in the AM, 100-110 in the PM), but I noticed I wasn't freaking out from it. I was surprisingly calm in fact.

I am still questioning if I have POTS, and I know I won't know for sure until I get to the doctor (I don't really have any other symptoms other than HR increase on standing, and sometimes palpitations with it). Other than the questions above, I am wondering what other things can cause my symptoms. I am thinking there is something chemically wrong since it seems to have a direct correlation with my anxieties, but when I look online, I only find things about POTS when I type my symptoms. Again, I don't even get headaches or lightheaded.

Any help or opinions would be appreciated.

[Statix]

Anyone have any opinions on this?

[misstraci]

Hi, hope you're doing ok.

1. I haven't officially checked my HR after I've been moving but it may reach a point and then level out or drop a bit after that initial transition from sit to stand and especially when the blood is flowing allowing more to the heart, the HR may come down a bit.

2. Sorry it's hard to find a doctor and about the anxieties. Whenever something "abnormal" happens to my body, be it whatever, I notice heightened anxiety. Especially dealing with my heart and HR. OR for example, if my arm feels numb or hurt all of sudden, more than likely its that i layed on it funny but in my mind, it automatically means heart attack or something terrible so, then kicks in my anxiety and then the HR goes up more, etc ,etc.

3. Definitely sounds like it could be POTS. Lots of things cause it. It could very well be a chemical imbalance of some sort.

Are you currently taking any meds at all? I know a lot of people swear by SSRIS (antidepressants/anxiety med) and that may help both your POTS and anxiety symptoms. It would be worth askign about once you find you a doctor. Sorry you aren't feeling the best.

[Statix]

Thanks for the reply. I have tried SSRI's in the past with little to no relief. The side effects would make me get off them because I felt the negative out weighed the positive. I am going to ask about Zoloft since I have not tried that one yet.

I keep trying to think about other things that might could cause a faster heart rate upon standing, but all I seem to find from searching the net is POTS that explains the same increase I am having. Could a thyroid problem mimic the same HR increase? Could anything else mimic a faster heart rate upon standing other than POTS?

I feel like I am going insane sometimes because I can't seem to find anything other than POTS that describes this, yet I don't seem to have any other symptoms of POTS.

Also, from what I have gathered, they couldn't diagnose me with POTS if my symptoms have not persisted for longer than 6 months. I have only been dealing with this for a little over three weeks.

[SeattleRain]

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.

[Statix]

I have done it for 5 mins, and I couldn't really tell a difference in my heart rate as my heart rate increases pretty much immediately upon standing. when I stand still, it would go up a bit, but would eventually level out, but still in or near tachy range.

[SeattleRain]

I have done it for 5 mins, and I couldn't really tell a difference in my heart rate as my heart rate increases pretty much immediately upon standing. when I stand still, it would go up a bit, but would eventually level out, but still in or near tachy range.

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.

[Statix]

What should I be looking for? I think I have actually done it for 10 mins now that I think of it. What would happen if it is POTS? Do I need to remain completely still or do I just need to be standing for 30 mins? (I stand for 30 mins every day, but walking around, too)

[jknh9]

You'll need to be completely still. For me, I can walk and move around just fine, but on bad days I have a lot of trouble standing perfectly still. Also, during an actual TTT you're strapped in so that you literally can't move, so try to be as still as possible. I think for it to be POTS your HR has to increase 30+ BPM within 5-10 mins of standing/being upright (someone check my numbers please, I'm not sure). You should probably try to do it several hours after a meal so you're not getting any side effects of digestion, which can affect your HR. For my TTT when I was initially diagnosed, my HR jumped over 60 BPM within 2 minutes and I was unconscious between 3-4 mins.

One thing that would help you measure is a heart monitor. You can get decent ones pretty cheap on Amazon--I got mine for about $30 and it's pretty reliable. I use it when I exercise, but I think it would also give you a clearer picture about what's going on if you try it with a poor man's tilt.

[Statix]

I get a 30 beats or more jump directly after standing, and it will stay that way until I sit down (even if moving around). I don't have any other symptoms consistent with POTS, though. This is what has me confused.

[Statix]

Well I just did it for about 7 mins, I quit because I started becoming anxious after looking at my legs. They became purplish and had a little tingle to them. My HR did increase from a 60 resting to 93 standing. This could have been because I was anxious or concentrating on my HR, or because of course POTS. I am going to try again tomorrow when I have someone with me lol. I didn't get lightheaded or anything, and I think my BP actually went higher (I was looking at HR more than the actual BP).

[SeattleRain]

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."

Central Hyperadrenergic POTS

As a part of the definition, POTS is associated with a hyperadrenergic state (Table 1). In many such cases, the hyperadrenergic state is secondary to a partial dysautonomia or hypovolemia. There are some cases, however, in which the primary underlying problem seems to be excessive sympathetic discharge. These patients often have extremely high levels of upright norepinephrine. While we require the upright norepinephrine level to be >600 pg/ml for the diagnosis of POTS, the hyperadrenergic subgroup often has upright norepinephrine level >1000 pg/ml and it is occasionally >2000 pg/ml. These patients sometimes have large increases in blood pressure on standing, indicating that baroreflex buffering is somehow impaired.

[Statix]

Yeah, I have seen that picture, and it also seems it's quite common for people to have blood pooling when standing still. I have also had anxieties for as long as I can remember, it's nothing new that has started since I have noticed the increase in standing HR. I am just very tuned with my body and the slightest change can make me feel some anxiety. But, from what I have gathered so far, it sounds like I do have POTS, or some sort of dysautonomia. It's just strange that it happened all of a sudden following my chest pain episode I talked about in my intro.