Hyper Pots Or Not Hyper Pots?

[Altruism]

I'm lost.

My TTT result is no significant BP change and my HR went up to 180 within 7 seconds (a record, I know lol) My Valsalva stage 4 overshoot was huge - BP increased to 190/120.

My 1st resting/standing NE was 290, then 7 min upright - 997.

My 2nd resting/standing NE in a controlled environment and on a beta blocker was 160, then 10 min upright - 599.

Do I have hyper POTS or not? My No 1 neurologist says it's POTS with hyperadrenergic component. My No2 neurologist says it's not hyper POTS because my standing NE should be ten (?) times higher than my resting NE.

I read that it should be above 600 to be considered hyper POTS and I'm confused. Any input will be appreciated. What are your NE levels and how did you get the Hyper POTS diagnosis?

Also, according to dr Grubb I think (can't find the link) hyperPOTS develops gradually and I got sick with POTS suddenly with childbirth.

My QSART test is negative, so no authonomic neuropathy.

I don't think I'm hypovolemic either. So what the **** is the root cause of my POTS and what subtype can I possibly be?!

[roxie]

Tbh, altruism I don't think there is enough research and a consensus to give you a definite answer. It's very frustrating. I know I have pots and eds. I'm also hypovolemic and saw dr Stewart in NYC who when had me on the TTT immediately labeled me low-flow pots but no other dr seems to use the "flow-types" and I think I also have hyper components or times but I'm not sure bc I haven't had catacholamines tested properly.

[arizona girl]

Oh my goodness. I'd go with the opinion of the 1st neurologist. I've never hear of the 10 xs, that would be more like what happens with a pheo. Vanderbilt and Grubb I believe use anything over 600. I'm not sure why your bp didn't rise on tilt, but if it does in real life, that is easy to document. The fact that it didn't rise above 600 with a beta blocker, just means that the blocker is helping you some what.

Fyi mine went from the 400's to the plus 1,100's. Grubb diagnosed me hyper even without that test. He recognize what he sees and only required the test to support his diagnosis.

[Altruism]

Arizona,

We cannot detect my BP upon standing. BP cuffs give me errors even in the ER, so I don't know what happens :S I still prefer to believe I have a hyperadrenergic component as it sounds easier to "treat" than hyper POTS. I stopped propranolol because I was not able to tolerate it. Now I'm trying another one - metoprolol.

I think the worst part for me is the anxiety that a beast (POTS) lives inside me and controls me. Can I lose my sanity with a SEVERE unocontrollable adrenaline surge? Or pass out? Or have a stroke? What is the worst that can happen? I still get these daily and I'm soooo miserable...

[arizona girl]

I wouldn't worry about not getting the bp reading. The machines error when your bp fluctuates rapidly which sounds like what is happening with you. Hyper pots and hyperandrenergic pots are the same thing. People just say hyper for short.

Please try not to feed into the mental fear about this, as you will make the reactions worse. Be grateful that your body is using it's norepi as a back up system, to you not being able to get blood to your brain. I suspect those who have the hypotension along with their pots, have lost or do not have the ability to produce norepi and they get no blood to the brain and can not be up right without fainting, nausea of dizzyness. Many are in wheelchairs.

I've found lying down and being quiet, some slow breathing really helps when I'm having an episode. If you check your bp/hr after resting quietly it should be normal and you should feel better. I make a point of making sure I get horizontal thru out the day. Because we swing high to low with hyper pots I don't think the risk of stroke is the same as some one who's bp never drops. If your bp and hr are not dropping once supine, your doctor needs to know that. There may be something else wrong that needs to be addressed.

If you didn't faint on ttt or in real life, you probably aren't going to at this point. I do get presyncopes in real life and a syncope on ttt. It really takes extra triggers to make me collapse and the symptoms go away as soon as I get down and stay down for about 10 minutes. This is the body's way of making sure your brain is getting the blood/oxegen it needs, your body resets once you are supine. If you start to feel dizzy or nausea then lay down as soon as you can. If you are driving pull the car over. These are just commons sense things to do.

If you swing from high to low bp wise, Dr. Grubb put me on labetalol which is an alpha beta and I think easier to handle the clonidine.

Since, it sounds like you are hyper, I'd take a look at other autonomic symptoms you might be having anything from sweating to digestion. If you have those kind of symptoms I'd consider looking into small fiber autonomic neuropathy and try and see if you have some other underlying illness as your cause.

For now try some calming techniques, as they will really help. I wish I could always feel as good as I do when I'm lying down being quiet.

[Altruism]

Ok, here is the big difference - I get these horrible surges while resting in quiet room, in bed, supine and relaxed! They come out of nowhere! Especially upon waking up...

My neurologist thinks it's not POTS since these episodes do not seem to be related to my position. Maybe I simply have developed severe anxiety?

I think I should stop avoiding real life. I don't drive because I'm afraid I might feel sick. And if I'm araid, it'll happen. I don't walk to avoid triggering episodes. I stay in bed and wait for SSRIs to kick in, so I can have a part of my life back.

Hyperadrenergic component is different than hyperadrenergic POTS (former is just high NE, latter includes high BP), that's what I was referring to in my previous post. I know it's the same as hyper ):

My sweating is normal. My QSART is negative, so it's not small fiber neuropathy either. My digestion is ok, except for a BM with every attack I get.

What could it be then if it's not autoimmune (ANA negative), not autoonomic neuropathy (QSART negative), not familial and not hyper POTS (no high BP)...

[arizona girl]

I agree with your neuro, if it is happening while supine that is not pots, but something else. Do you take your bp/hr when this happens while supine? Qsart alone does not rule out sfn. The gold standard is the skin biopsy and having both of them is best as it can be patchy. Does your doctor think there is a true anxiety component? There is nothing wrong with getting that diagnosis if that is truly what it is, there are lots of potential treatments for that.

I'm assuming you had a full cardiac workup to rule out issues there. A cardiologist would be able to do a holter monitor to catch what is happening when you have a surge. I don't really know what one of those feels like. I didn't even realize my heart was jumping 50 - 60 beats a minute until we monitored it. I just felt tired on standing. I also get what I call wound up in an animated environment.

No positive ana does not rule out autoimmune disease. There are only a few mostly rheumatic that have positive ana's. A postive one also doesn't prove an autoimmune disease. That make me think have they done a through thyroid work up, not just a tsh, but Free t3, ft4 and thyroid antibodies tpo/ab? I have hashimoto which can effect norepi as well.

If you can try to live your life and not live in fear, being afraid won't change anything for the better, and may make it more difficult.

I hope they get to the bottom of what's wrong, so you can improve.

[issie]

I have the symptoms that you do with the high bp's and high NE levels with standing. I also have the issues even while lying down. Most of us with MCAS find this to be true for us. Treating MCAS has been a big help to me with the swings that are very unpredictable and it doesn't matter what position your body is in. If you do have MCAS --then most of us can NOT use beta blockers as it will cause a mast cell degranulation and cause all the issues to be worse. When that happens there is a lot of surges, flushing and it affects the mood.

Issie

[arizona girl]

Thanks, issie that's a good call. I didn't know that happened with mcas when you are supine. I guess I'm lucky I don't get that. It is always smooth sailing once I lay down. I do get the waking issues with pain and stiffness, but my bp/hr aren't a factor with that, except maybe brady/hypo sometimes.

[AllAboutPeace]

I am not Hyperpots, but during the first few months of my illness, I had surges that would come on often while sitting and/or laying down. I actually feel that if I had been tested then I would have been diagnosed Hyper. They could be triggered by any kind of movement around me (even on a tv screen), by shifting positions, any kind of sudden noise or stimulation, etc.

But other times, especially at night they would just come on at random. For me, they were not associated with anxiety feelings at all - my sympathetic nervous system was just really mixed up. There have been many threads on here as well about getting these surges at night/ waking with them, etc., so I have always thought of it as a 'Pots thing'. After a few months these settled down for me and my sympathetic system for the most part seems to have worn itself out (as my baseline is more hypo and brady now). I do still get those surges sometimes now, but it's almost always during a crash/nap, so I think it is trying to compensate for for something else being too low (bp/hr) at the time.

[bebe127]

Altruism,

I'm so sorry you are having a rough go of it and I'm sure that's putting it mildly. I too used to live in a constant state of fear (can still happen if I don't keep it in check). I used to be obsessed with my vitals, taking them all the time. If my bp was up, I'd freak out, take my bp 5 minutes later and it would've climbed and I continued like this until I worried myself so much I'd go into a full blown panic-type attack and have to call the hubs home from work to babysit me. I felt as though I was going crazy! Finally, the dr. told me after looking at my bp log, to stop taking my vitals all the time, that the worry is only making my symptoms worse. He said I only need to check it twice a day, am and pm. If I get a worrisome read, go lie down and try to relax and take it again in about an hour. This, believe it or not helped so much. I began slowly to not take my vitals as much (of course I would always consult a dr. before making any decision as everyone is different) and pretty soon, I would go weeks without taking them. I didn't feel any better physically and it doesn't seem to matter what my vitals are, I still feel crappy most days, so I figured why waste my time and energy only to get totally freaked out and spaz?

I have extremely high anxiety. It doesn't take much for me to freak out. Mental and emotional stress get to me especially. I've often wondered if I just have an anxiety disorder or if it truly is POTS seeing as my original dx was "probably POTS" after I tested positive on the TTT. No dr. has told me what type I have, how I got it or if it will ever go away. I have, as of late, begun to question everything.

Back to the anxiety...I was seeing a therapist for a short while and while she did absolutely nothing to help me, she did refer me to a book (I might have already shared this with you) called The Anxiety and Phobia Workbook by Bourne. It has some really good information and tips on dealing with anxiety. I refer to it often. One of the tips is positive self talk. I do this quite frequently, especially if I have to drive somewhere. I tell myself everything is going to be ok, my kids can dial 911 if necessary, my husband will come running if I call, and I pray A LOT!!

Wish I had answers for you. I do so hope you get to feeling better real soon. {{Hugs}}

[ramakentesh]

Just call it hyper pots - most people do

http://www.ncbi.nlm.nih.gov/pubmed/20035362

The study above suggests that the same percentage of POTS with NE levels below and above 600 had signs of neuropathy - meaning the delineation on this basis is potentially equiovocal in terms of its etiological significance.

Some docs have tried to delineate via MSNA (nerve firing rate being increased or decreased Hyper v neuropathic).

Now that there is more evidence that some patients may have NET defiency delineation via MIBG reuptake might be plausible?

[Joann]

Ramakentesh,

What does that last sentence mean? NET defiency dlineation via MIBG reuptake?

Altrusim,

While most of my problems are when I stand, I do get these problems sometimes when I am just changing postions. Like turning over in bed, or getting up after sitting a while. When I was at my worst, just turning my head could set it off. Of course, I still do not have a definite diagnosis. The doctors that are near where I live have said POTs, some kind, doesn't really matter what kind. That is why I have gone to Cleveland Clinic for more answers. My area has many hospitals and they have all been disappointing.

[ramakentesh]

Hi mibg reuptake is a scan that measures how a radioisotope identical to noreponephrine is taken up by the norepineprine transporter. Its abnormal in 4 out of 20 pots patients or more and suggests net defiency or cardiac denervation.

[ramakentesh]

As for anxiety I've found licorice and florinef helpful for those sympath symptoms

[Altruism]

Rama,

I know you're a POTS expert, however, I cannot understand a single word from what you're saying. It could be because English is not my mother tongue or the abbreviations.. )

[ramakentesh]

believe me Im not an expert!

Sorry - NET defiency is norepinephrine transporter deficiency - MIBG reuptake is a scan conducted to assess the sympathetic nerves of the heart amoing other things - it checks uptake of norepinephrine which is the chief chemical messenger of the sympathetic nervous system.

[diamondcut]

Rama

Is this a test you are trying to have done? Do you know where this study was done? Will it be certain research centres in the world that do this MIBG scan.

[sisblostg]

My test results were similair to yours and I was dx hyper-pots. It did explain ALOT of my previous "odd panic attacks" so I believe the dx is correct. When they were doing the lying standing blood test for NE levels , I had them recreate one of these "odd panic attacks". Whenever I go to the full service groecry store I would be fine pushing the cart around but when I was standing still at the check out, I would get POTS symptoms but if any loud noise, anything startled me I would look like I had the flu, shaking(I can barley enter my debit pin in) sweating barley able to stand. When they recreated this my levels went close to 2000!

[ramakentesh]

Any patient with pots can experience postural anxiety. Anxiety can be caused by hypocapnia, reduced sodium to the brain, cerebral hypoperfusion, and adrenalin released to counter blood flow disregulation in pots.

mibg cardiac reuptake scan.