Overactive Autonomic Nervous System?

[shadesofgrey49]

My cardiologist is now calling my POTS an "overactive autonomic nervous system"? And that the treatment would be the same whether I'm diagnosed with POTS or not?

[firewatcher]

If your heart rate increases by 30 bpm or more by just standing and for no physical reason (a week of diarrhea, massive blood loss, addison's disease, someone with a gun to your head), then yes, you have POTS.

Hyperadrenergic POTS is an over-reactive ANS. The brain and heart sense a sudden shift of blood volume and kick it ALL into high gear and ends up overcompensating by releasing too much norepinephrine, cortisol and constricting your blood vessels too much among other things.

The treatment will probably be the same, CNS depressants (Klonopin, Valium, etc.) to calm down all the neural firings and beta blockers (Inderal, etc.) to slow the heart and lower BP, plus some sort of blood volume expansion if you show signs of hypovolemia.

Does your doc know what POTS is? Has he used that term at all? My first endo just called it orthostatic intolerance.

Good luck!

[shadesofgrey49]

Thanks for the response, firewatcher.

I see what you mean about the over-reactive ANS.

He seems to understand what POTS is, but he's been leery to call it that, and he's not very familiar with treatment options. He originally would have let the TTT slide by because it was negative for orthostatic intolerance. I had to point out the existence of POTS and the difference and such. He seemed to already know this, but said he doesn't like diagnosing it because it's not well understood and it's hard to treat. He sent me out to a neurologist, who (despite having no idea why I was sent there) ordered me an MRI. I'll also be getting general autonomic function testing, but I don't know if the person doing it will be familiar with what to look for. The cardio wrote me a script to take to an endo for norepinephrine supine and upright. The endo refused to do it upright. The cardio is OK with that. He says knowing that my norepinephrine jumps while standing won't affect the diagnosis or the treatment. This confuses me because I thought these extra tests were what he wanted to confirm a diagnosis.

Oh, just as background, my tilt results were: increased by 60 bpm, reached 130 bpm at 20 minutes. Blood pressure ranged from 105 to 128 systolic.

I'm trying to find specialists on the DINET list who can see me in the next few weeks. I'm discovering this is a difficult goal.

[firewatcher]

I'm trying to find specialists on the DINET list who can see me in the next few weeks. I'm discovering this is a difficult goal.

Good luck on that one! My endo, neuro and primary docs all thought it was POTS but refused to call it. They pushed hard and I got in to Vanderbilt's outpatient clinic...it took 6 months. I was dxed there with hyperadrenergic POTS and some of my docs are still arguing with the diagnosis.

Give us an idea where you are and maybe someone here can point you to a neuro or PCP who can treat you.

You will find that organization (start NOW and keep copies of every lab and test result!!!), education and persistence on your part are going to be your best treatment options. It will be YOU who teaches your doctor about POTS, and it will also be YOU who tells him what works and what doesn't. Treatment is so individualized that it will be trial and error for quite a while. Read and ask lots of questions here and you'll get a clearer idea of what med does what and why, and what may work for you. A PCP with an open mind and no box to think inside will be your best care option.

[momofsara]

I completely agree with firewatcher, keep ALL copies of your tests, etc. If they are not offered to you, ask for them. I cant tell you how many times they have been very helpful in Sara's care. Many times, doctors just simply are doubtful if you only TELL them your results, they are more receptive if its on paper. Also sometimes there is a time lag or even difficulty in getting reports sent from one place to another

( labs to doctor, one doctor to another, etc ) Anyways, best of luck to you and take care.... Susan

[shadesofgrey49]

It will be YOU who teaches your doctor about POTS, and it will also be YOU who tells him what works and what doesn't.

Yea, I've been noticing that.

I'm on Long Island, New York. The New York City area would be doable. I'm planning to go back to school in January (I'm on medical leave now)...I'll need a whole new set of specialists there. School is in Syracuse, New York.

I'm getting so tired of being organized and persistent. When do the doctors start educating me? When do I get to be treated instead of me treating them?

Does it ever end? Do you still have to go through this junk once you're diagnosed and mid-treatment?

[firewatcher]

Grey,

Unfortunately you are going to have to get used to it. Once you have a definite Dx and treatment, many competent docs will still say there is no such thing as what you have! So, unfortunately, YES you still have to do all this once you are being treated.

Just keep it all in an organized D-ring binder and put it in as you get it, that way it is ready to go to the next doctor when you are. I try to make sure that my PCP also gets a copy of all the specialists' test reports.

My Dad keeps telling me its the practice of medicine, and I can't wait to see the performance! With all this practice, the performance must be amazing!

Chin up! We are here for you!

Jennifer

[mkoven]

How is a 60pt increase not diagnostic of orthostatic intolerance??? I second others here-- you need to get to a center that treats ans problems. Some still think the ttt is only to trigger syncope, it seems, and if you don't go unconscious, it's "negative," not getting the range of orthostatic issues one can face, including pots. There were other issues I had at Cleveland, but they were great diagnostically and at making some better suggestions.

[EarthMother]

My cardiologist had a different explanation of the hyperadrenic cycle of POTS that I seemed to be since last spring. He said that in my case it wasn't that I had an "abnormal" level of ephinephrine but that my body was reacting to even normal levels with an inappropriate response. Which certainly made sense in my case since my labs were showing normal values but my system was seriously misbehaving.

I had TTT years ago (and yes get a copy of all your lab records -- the hospital LOST my TTT and now neither my physicians nor I have a copy of it) and the cardiologist just did a quick stand and deliver blood pressure check in his office to re-affirm what was going on. Oh, and we did another Holter test because I was complaining of skipped beats. Everything was textbook POTS.

Good luck finding someone and somethings that will help.

[mom4cem]

That is what my cardio says also, overactive nervous system and that my body responds innapropriately to normal levels of adrenaline-like EarthMother said.

Hmm, maybe it's a common term on long island since thats where I am also.

[ramakentesh]

I might just chip in here by saying that in some cases serum levels of norepinephrine/epinephrine may not appear elevated even if there is faulty reuptake (the faulty norepinephrine transporter scenario) but its metabolites that are produced once NE is reabsorbed into the synpatic cleft may be lower than normal.

That is how I got diagnosed anyway - normal NE but low metabolites plus excessive sympathetic activity on standing.

My doc says that each research institute has its own ideas about the cause(s) of POTS and that they are all rushing to sort of get to the bottom of it (they are very close now). They come down to two probable causes:

1. the nerves of the peripheral veins are being attacked by an autoimmune response - we stand, the veins do not constrict, our heart and autonomic systems go into overdrive to compensate for the massive blood loss to the head. This causes excessive norepinephrine activity which results in excessive venous constriction - which actually dilates the carotid arteries causing more dizziness, visual distubrances and brain fog.

2. The veins are fine - its the sympathetic overactivity that is the problem - the norepinephrine transporter is faulty because its gene has been silenced by an epigenetic mechanism (abherant hypermethylation of its promoter region), NET proteins are being attacked by an auto-immune response (could account again for the waxing and waning which is commin with auto immune disorders) or now less likely, our beta and alpha receptors are hyper sensative to norepinephrine.

In terms of pharma. intervensions in the future I assume they will probably be looking at either venous constriction or the faulty NET function. Perhaps if hypermethylation of the NET gene is proven we might actually see a cure - as there are currently a number of agents used in cancer that demethylate abherantly hypermethylated genes.

The now believe that this type of hypermethylation occurs because of an overexpression of the bodies natural DNA methylases - DNMT3 in particular.

[ramakentesh]

Oh and my advice is to find someone who understands POTS. A specialist in that field. otherwise you'll know more about it than they will and in my experience this is a situation most docs dont like.

[firewatcher]

ramakentesh,

How were you tested for this? Specifically what tests were done? My endo (#1) says I could not possibly have hyperadrenergic responses because my catecholamines were "low." However, he did not do the test like an ANS specialist would. Has this knowledge changed your treatment?

[shadesofgrey49]

Otherwise you'll know more about it than they will and in my experience this is a situation most docs dont like.

We don't like it much either. Funny sidenote: In the dictation to my cardiologist, my electrophysiologist noted that I had been doing a lot of research on the internet and I'm very conscientious about getting the diagnosis. As if to say, Look out! She's onto us!

To those who have responded thus far, thanks so much for all the advice. I have been collecting my files and I'll start making a binder. Good idea.

I'm trying to get an appointment with Dr. Stewart in Valhalla.

Ramakentesh, very interesting research and it leaves me feeling very hopeful that doctors may be onto something, and although we can't just go to any doctor and expect them to believe us or educate us, there are many who may to be able to offer relief.

[ramakentesh]

My favourite doc report I accidently read said:

'John is a pleasant young man with no obvious physical deformaties.'

Cracked me up!

[shadesofgrey49]

Haha!

And I love when they say it was a "pleasure" treating us and such. I don't consider it an "accident" to see those. We have every right to all our files. I hate that some places charge you for them.

[shadesofgrey49]

Update:

I saw another neurologist today and she did an RR interval and something else involving deep breathing. I was under the impression that more autonomic function tests would be done.

I'm getting a brain MRI on Thursday, and I made an appointment with someone on the DINET list in NYC. Let's hope they can diagnose and treat me!!

[ramakentesh]

ramakentesh,

How were you tested for this? Specifically what tests were done? My endo (#1) says I could not possibly have hyperadrenergic responses because my catecholamines were "low." However, he did not do the test like an ANS specialist would. Has this knowledge changed your treatment?

Sorry I missed your post. I was tested in a few ways. MIGB uptake scan of norepinephrine in the heart (a novel diagnostic tool), my NE and its metabolites were measured during my tilt table test as well as an ultrasound of my carotid arteries to determine the level of blood reduction to the head, and finally I had a vein biospy that demonstrated reduced amounts of norepineprhine transporter.

the strange thing is often patients with this still have excessive blood pooling in the lower veins which they arent sure about. Maybe it is a result of depleted levels of NE? Or an autoimmune thing?