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If Pots Is An Orthostatic Issue, Then


sue1234
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It just dawned on me yesterday, that yes, I have orthostatic issues and that is why I am on this forum. When I stand, the whole cascade of autonomic things begin to happen--faster heart rate, higher b/p, sweating, shortness of breath.

However, if I am sitting, things are pretty much normal. BUT, along with developing POTS, I have developed no tolerance for ANY stress. So, even if I'm sitting, if I am in even a barely stressful situation, I get all of the symptoms that I get while standing! This can happen for what most people think are not much of a reason. I did NOT have this before POTS hit four years ago, but now I can be sitting and get stressed, then feel like I'm going to pass out.

Twenty or so years ago, I had some panic attacks and that felt different. I never felt like I was going to pass out, so this is not a panic attack.

It just feels like overactive adrenal glands to me, in an adrenaline way, not in a cortisol way.

Anyone else?

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My body malfunctions in all positions. If I am lying down, I can feel dead like I have no energy, and no pulse pressure. I am like this every morning.

Sitting can make me symptomatic and standing can evoke symptoms.

Any stressor probably stimulates secretion of stress hormones, and I suppose I react to that as well.

Even if this syndrome is called postural "othostatic" tachycardia, that does not mean that symptoms are present ONLY when standing.

Like I said, I malfunction in any position. My body no longer works normally. Sorry, if I cannot give you a better explanation. Once I figure this all out, I'll let you know..... :blink:

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See I was kinda wondering about the same thing. I have all the same orthostatic issues no matter what position I am in. Even if its laying down in bed. Because of this I was starting to wonder if I was diagnosed wrong. Actually kinda in denial and refusing to believe the dx. But the more I read about POTS and all the "wonderful" things that it does to the body, I decided that its all "just the POTS". SOrry I can't be of help. Just that I have the same issues.

~Kelli

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Good question - people that fit the hyperadrenergic form of POTS seem to have an overexaggerated 'pressor response' to stress and orthostatic challenge. But it could also just be the increased norepinephrine and epinephrine in the system making us more sensitive.

Many POTS patients report the same thing. Scary movies arent as fun as they used to be LOL

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YES! It doesn't matter what position I'm in if I'm exposed to stress. Yesterday I went to a family Christmas party where several relatives were wanting to know how I was feeling. I usually just say "fine" and change the subject, but I know these folks really care and wanted to know. As I was trying to explain to them my recent hospital stay, why medications aren't helping much, etc., I felt the familiar tightening in my chest (I stayed seated the whole 2 hours of the party). Then my upper body felt so hot and my thoughts got jumbled, then my chest really hurt. In the past, my BP during these episodes is usually over 150/100 and my pulse is often over 100 (standing, lying down BP and pulse will be a bit lower).

I think the crowded, noisy atmostphere of the party also contributed to my worsening symptoms. I was recently prescribed nitro for the chest pain and it helped a bit. But I ended up taking 6 pills over the 2 hours. During the car ride home, I reclined the seat all the way and put my feet on the dash (I was a passenger). Once home, I took a coreg which is a beta/alpha blocker. Within 15 minutes, the episode was 75% gone. Normally I'd have to lie in bed for hours or days before I improved.

I really think that in my case, it's the alpha blocking effect of the coreg that helps me. I've explained to my doctors that my sensitivity to stress is my most debilitating issue. During my catecholamine test, my norepi level went from 250 to 1089 standing. The Mayo doctor couldn't tell me if my elevated norepi level was the primary cause of my POTS, or if it was secondary as a response to abnormal pooling. But after trying everything to address to pooling (compression, salt, fluids, tilting bed, exercise, etc), I'm convinced that at least part of my primary problem is excessive catecholamine release.

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O.k. If there are other people with the "symptoms" that can occur regardless of being upright or not, then what is the factor that makes us vulnerable to increased norepinephrine, no matter what? This phenomenon makes POTS just sound like it is another "symptom" of the real issue underlying this. So, what is the underlying issue for people like us? I am still being investigated for having a pheochromocytoma, as my right adrenal has an adenoma that grew from 7mm last year to 1 cm this year.

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I also suspect an underlying disorder, but have been tested for everything and nothing comes up (rheumatology workup, neurology workup, endocrine, cancer, etc.). My mom came down with carcinoid syndrome at my age which is associated with excess catecholamines (among other things) and labile BP in response to stress. I'm negative for that so far.

I have an angiolipoma on my left kidney, nothing on my adrenal glands.

I hope they can figure out what might be underlying your POTS. As for me, I'm convinced that one day we'll know what's underlying my POTS. It will take time, and in the meanwhile I just have to be patient and try to manage my symptoms enough so that I can enjoy life.

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Its all POTS - most of the doctors now realise that the problems behind POTS in either norepinephrine reuptake, reduced neuronal nitric oxide or neurovascular circulatory control in POTS are present at all times and are only more obvious with orthostatic challenge.

There is only one subgroup that appears to have a totally normal circulatory presentation when supine - the parasympathetic withdrawal catagory - for the rest of us and the vast majority its present always.

This doesnt mean that there is an underlying disorder, it just means that the causes of POTS dont stop working when you lie down - lying down just allows the blood to flow to your brain with the influence of gravity.

Reduced norepinephrine uptake would explain all these symptoms.

think the crowded, noisy atmostphere of the party also contributed to my worsening symptoms. I was recently prescribed nitro for the chest pain and it helped a bit. But I ended up taking 6 pills over the 2 hours. During the car ride home, I reclined the seat all the way and put my feet on the dash (I was a passenger). Once home, I took a coreg which is a beta/alpha blocker. Within 15 minutes, the episode was 75% gone. Normally I'd have to lie in bed for hours or days before I improved.

Some POTS patients - such as myself - have used small amounts of alcohol in this situation to reduce the norepinephrine surge and pressor response. Next time you have one of these over stim episodes check your blood pressure.

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Next time you have one of these over stim episodes check your blood pressure.

My BP is usually higher than 150/100 during these episodes. I read your recent post on NET deficiency. I didn't understand some of it, but agree that I totally fit that clinical picture. I couldn't figure out what treatment was recommended for this type of POTS presentation, though. Would it just be an alpha blocker?

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The level of your norepinephrine would probably be suggestive of NET deficiency although ofcourse Im no medico!

Well the treatment is a bit weird - I think at Mayo they use phenobarbitol, at Vandy they use clonidine and Dr Grubb uses labatelol, coreg, clonidine or methyldopa.

Does the alpha/beta blocker actually help with your dizziness??

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I have the same problem but I have too much adrenaline in my body so I just assume that is why I still get some of the symptoms while I am sitting or standing. I can no longer watch close sports programs or scary intense movies, tv shows, etc. You just have to limit what you do and figure out what prompts your symptoms and stay away from those! Good luck.

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Does the alpha/beta blocker actually help with your dizziness??

I don't think it helps much with the constant OI symptoms (dizziness, fatigue (makes this a bit worse maybe), aches, etc). It does reduce palpitations. Mostly, I really like the decrease in chest pain and flushing that I normally get when I talk, the phone rings, the dog barks, or any stress. It's not gone, and it feels like even on the coreg CR (long lasting) I only get this benefit for about 5 hours then it wanes. I'll take a bit more fatigue in exchange for this benefit anyday. I have the same purple arms and legs when lowered.

I'm on the lowest dose, 10mg/day. My cardio knows I often have odd reactions to meds and wants me on this dose for a couple weeks and then we'll increase bit by bit.

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