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Hyperadrenic Pots


dezyrae2
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Hi all I am just wondering if anyone could give me info on hyperadrenic pots. I had a tilt table test postitive for pots recently but they never said what kind. I have been doing research online myself and saw that this kind of pots has symptoms that are worse with isoprul injection which made me very sick when i got it during the test. The other thing i noticed was that i get alot of migraines and that was also one of the symptoms. If anyone else has this type of pots please let me know your main symptoms so maybe i could discuss this at my next appointment. I am also extremely medicine sensitive. It seems all the pots meds like florinef, midodrine, and beta blockers give me extreme headaches. I appreciate you time and help. Thank you. Desiree :)

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It may be good to know what type of POTS you have for your own information and knowledge, but in clinical practice, this piece of information really doesn't matter as treatment options are essentially the same for all forms of POTS. Also, there are many overlapping features in various forms of POTS that are common to all types, so none of the manifestations, like migraine, for example, are specific to one form or another.

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Guest tearose

dr guest, I am not under the same impression that all treatments are the same.

I do have the hyperadrenergic type of POTS and as documented through testing, the barroreceptor reflexes are not functioning adequately so I then trigger the dump of norepinepherine. It was explained to me that I am having a "Normal response to an abnormal condition".

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tearose, I don't know your specific situation, which may be unique to you, but in general, SSRIs are NOT contraindicated in hyperadrenergic POTS. Selective serotonin reuptake inhibitors (SSRIs) act on serotonin pathways, not norepinephrine/epinephrine, so would be one treatment option for patients, if one is able to tolerate these. Interestingly, regardless of whether your POTS is hyperadrenergic or not, some patients are not able to tolerate SSRIs, so in that case, other medications should be implemented because of the sensitivity and intolerance to SSRIs, not because these are contraindicated. Perhaps what you are referring to are SNRIs - selective norepinephrine reuptake inhibitors, such as Cymbalta or Effexor, which would probably not be the best choice in hyperadrenergic POTS because of their potential to increase blood pressure. This is where I would say that treatment for hyperadrenergic POTS does differ from the treatment of neuropathic POTS - because these patients are prone to BP spikes as well as hypertension, and thus, in those patients medications that further increase BP, such as Cymbalta, Effexor or even excessive salt intake, are best avoided or minimized (with respect to salt intake).

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Guest tearose

dr. guest, With respect, this is not what I was taught twice at Mayo clinic.

In the case, my case, of a "normal response to an abnormal condition"... The rising levels of norepinepherine are essential to raising my heart rate and getting blood to brain and organs. I do NOT have low or elevated seratonin. I have no trouble with seratonin. I need the elevated norepinepherine to stay alive.

It is not recommended for me to use SSRI or SSNI.

Desiree, can you tolerate increased sodium? this helps some. Also,have you tried compression garments? I use both an abdominal garment and 40mm compression pantyhose. If you need to stabilize quickly do you notice the moment you sit or lay down you lower your heartrate? You may want to get a heart rate monitor to train yourself to notice the little changes that warn you of an upcoming problem. I also find when feeling week and pre -headache, that by drinking water or electrolytes, I don't get headaches anymore. These are my "treatments" to manage.

best regards,

tearose

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Hi tea rose

Thanks for the advice of the compression stockings and salt. I have recently upped my salt intake and drink alot of gatorade and i just started using the stockings but my doctor only ordered 10-20compression for me to start. I do notice a big difference with these things but i stiil seem to get huge adrenaline rushes especially when i sleep. It wakes me up and then my heart rate is very high and i feel short of breath. When it passes i usually feel very tired and have headaches. Do you have any suggestions on how to stop these rushes or how to avoid them? Or is this just another thing to deal with with pots? Thank you for your time. Desiree

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Guest tearose

Desiree,

Sorry to say but yes, for some, the "rushes" are a part of what we have to adapt to and learn to manage. Unless of course your condition resolves and you get better!

Okay, so let me look back. The key for me was using a heart rate monitor. I learned the early warning signs so to speak. Try to figure out what brings on early changes in your body and what if anything breaks the cycle. For me, I ignore most heart symptoms like fast heart rate or palps and one type of chest pain. (I have only one kind of chest pain that is not good.) I do know for me, the early signs of a problem are the white spots I see or suddenly noticing shortness of breath. As soon as I sit down, I balance again. On bad occasions, I bring my legs up to my chest. By using my heart rate monitor I learned that I am okay to sit, walk and live in the heart rate zone of between 50-160. I do notice if I get near 160 I will trigger and "flip" into a super high high heart rate, so I don't go there. I have set my heart monitor to alarm at 145 so I can sit or break the rate lower and sooner. After wearing my monitor for a couple of years I felt "conditioned" enough to go without it if I am well rested, hydrated, and in familiar surroundings.

I use a seat cane when I am feeling more tired or susceptible to a surge. It gives me the freedom to sit immediately if I am out and about in unfamiliar places and may need to sit.

A miracle supplement for me was the slow-mag magnesium supplement my pcp recommended. I only take one tablet a day but is has helped me have less chest pain and less headaches. If I recall, magnesium helps us retain potassium and potassium gets burned up more when our heart rates are very high.

Sleep in another issue. I have to get up to use the bathroom so that interrupts my sleep. I did a sleep study and it does show non-restorative sleep due to many micro-bursts of awakening that I am not aware of. They still don't know how to interpret these. It is enough to wake me but not enough to show a change in heart rate. They question is whether there are micro early effects on our blood pressure that compensates before we get the heart rate rise.

I was using coffee/caffeine to raise my blood pressure for years until this past January. I am now off all caffeine. I am still feeling adjustments and have to work harder at keeping my bp up but I was getting sick on the caffeine.

No trouble with answering your questions, I am happy to offer what I learned. I suppose when I can, I come to learn, share and write here. Just remember, these are all our personal experiences and there is nothing more important than you developing a good relationship with you doctor. I have two wonderful doctors at Mayo Clinic that I trust with unwavering confidence. They helped me get my life back!

best regards,

tearose

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Tearose

Thank you once again. I also have interrupted sleep since i got pots. I will discuss this with my doctor. Also where do you find this kind of monitor? Do you get it from the doctor? Thank you for all your time and help. God bless. Desiree :rolleyes:

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Just in case anyone is taking SSRIs or SNRIs and have hyperadrenergic POTS and reading this, this is perfectly OK, as these medications ARE NOT contraindicated in hyperadrenergic POTS.

Tearose, I don't think you fully understand the issue of neurotransmitters and the use of SSRIs. Those who take SSRIs for POTS or other conditions do not necessarily have high or low serotonin levels, but are greatly helped by SSRIs for all kinds of conditions - from depression/anxiety to pain to GI motility disorders to low blood pressure and others. SSRIs may not have been recommended to you by your doctors because of your specific situation, but that does not mean that this is the case with all patients with hyperadrenergic POTS.

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Guest tearose

For sure, if anyone is being treated by their physician they must see what the situation is for them!!!

drguest, I am clear that regarding neurotransmitters, it is important to understand if one has:

1) an abnormal response to a normal condition

or

2) a normal response to an abnormal condition

thus to clarify, ssri's are okay in some but not all those with hyperadrenergic pots. One needs to know if they are in situation 1 or 2.

I was responding to your original general statement in your first post where you say the treatment is essentially basically the same for all.

If someone has pots that is aggravated by anxiety, depression or whatever the chemical is, perhaps ssri's may help.

In the case of damage to small nerve fibers or malfunctioning barroreceptors, ssri's as I was told, will not help.

I wanted to clarify this, since many people may be helped by ssri's. For that matter, there are some things that work for some and not others in all areas of medicine. Again, I was told these guidelines by my very specialized Mayo team, so naturally, I feel it is important to state this here. I appreciate the discussion. Thank you.

Diseree,

I discussed my wrist blood pressure cuff and my heart rate monitor with my Mayo physicians and they gave me the go ahead. The mayo clinic pharmacy or any pharmacy will have the bp cuff. The heart rate monitors can be purchased online or at any sports type store.

I have used the Polar brand for many years and have been pleased. Do a search on heart rate monitors and you will find a lot of information.

best regards,

tearose

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If you read my original post, you will see that I didn't say that treatment is the same for all patients with POTS. What I did say, based on the current research studies, clinical experience of the academic institutions that treat and research POTS and my own training and clinical experience with POTS patients, that treatment options available today are the same for all forms of POTS. In fact, you may be shocked to learn that the same treatment choices are also used in more aggressive forms of the autonomic disorders, like Multiple System Atrophy or Parkinson's Disease. What the term "treatment options" means is that the choices from which your doctor selects a treatment for you are the same, regardless of whether your POTS is post-viral, genetic, hyperadrenergic, neuropathic, low-flow, high-flow, etc. These distinctions in POTS forms are made by researchers and some clinicians in order to better classify the etiology of POTS and to understand its various mechanisms, and not for therapeutic purposes.

Of note, is that you talk about POTS being triggered by anxiety or depression in some people, a statement which has absolutely no basis or evidence, as POTS is not triggered by any of these factors. Rather, both anxiety or depression can either be one of the various manifestations of POTS or occur as co-morbidities, which often accompany many other chronic disorders.

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Guest tearose

drguest,

It may be good to know what type of POTS you have for your own information and knowledge, but in clinical practice, this piece of information really doesn't matter as treatment options are essentially the same for all forms of POTS. Also, there are many overlapping features in various forms of POTS that are common to all types, so none of the manifestations, like migraine, for example, are specific to one form or another.

My information is current. There is too much controversy in the field still. I just feel it is too risky to make a statement that makes it seem like ssri's are the way to go or the gold standard or without possible serious or long term side effects IN SOME. SSRI' in some types of Parkinson's Disease patients are dangerous because it is not clear how they effect dopamine in the brain and has caused people to hallucinate and accelerate their cognitive decline. I will gladly submit the research information to you via email if you would like and I would appreciate seeing the research you mention.

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doctorguest,

Would you say that NCS may be triggered by anxiety ? Because if my BP rises from anxiety it may encourage the vaso vagal

reaction?

In general, emotions would effect the sympathetic or para sympathetic (don't know which) nerves...no? Which in turn efffect HR and BP.........

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Tearose, on further recall, I remember having a similar debate on SSRI use in the past, where, if I remember correctly, you seemed to have a perception that SSRIs are dangerous medications. In any case, I will not discuss this issue any further because there is nothing to debate about. You seem to want to contradict my statements, first on what I posted about treatment options being the same in patients with various mechanisms or etiology of POTS, and then bringing up the issue of SSRIs which have been widely used in all fields of medicine, including in patients with autonomic disorders, with success in a good portion of these patients. Then you also seem to sway my carefully-phrased statements about SSRIs and other matters - I say "carefully-phrased" because research is still in progress on many issues pertaining to autonomic disorders and their treatment - to blatant statements of "SSRI's being the way to go, or the gold standard", phrases that I never used. Then you again attempt to question and contradict me further on my statements regarding Parkinson's disease and its treatment, somehow again including SSRIs in the discussion.

I have responded to the original poster with the information that explains that whether her POTS is hyperadrenergic or not makes little difference in clinical practice, especially pertaining to treatment, never mentioning SSRIs or any other class of medications. You seemed compelled to challenge me on my statement, bringing in the issue of SSRIs, which was not the point of my post to the woman who started this thread.

In brief, I understand you are against SSRIs, or perhaps, other or all medications and have not used these yourself, whether under advice of your physicians or because of your own personal reasons, but I think that you're doing a disservice by applying your personal experience - which is based on only your own case - to other patients with the same diagnosis. Let people discuss their own treatment plan with their treating physician, without skewing their views by making statements how SSRIs are contraindicated, risky, dangerous, contraversial, etc.

Pat57, emotions, including anxiety, can certainly trigger a syncope or a tachycardic spell in those who have NCS, POTS, etc., but in people without these disorders, it should not pose a major problem (this, of course, excludes those who faint only in specific situations, like at the sight of blood, for example).

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Tea, my reading of doctorguest's post is not that he is recommending SSRI's to anyone, but saying that it is an option of treatment for all types of POTS. In my non-medical opinion I don't think it's known exactly how SSRIs help POTS, but they are shown to help a good number of patients and I think the only way to actually know whether it would be helpful is to try. Your concerns about side effects are valid, but I think that would be true for taking any type of medication. I think it's a decision that each of us needs to make in consultation with our doctors.

This is an interesting and sensitive discussion to me because I just started Paxil three weeks ago. I don't know which type of POTS I have - I never bothered to find out because I wanted to concentrate my energy on exercise, treatment, etc. I don't have anxiety or depression and am taking Paxil only for my POTS symptoms. Fingers crossed, it really seems to be helping with my BP and energy level...so no second thoughts so far :rolleyes:

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Hi Doctoguest,

Would it possible to explain in medical terms why emotions can trigger syncope to NCS and POTS patients but not to a normal person. I would like to be able to explain it to my doctor?

Thank you in advance.

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I appreciate everyone's info on hyperadrenegic POTS. I am not officially DXed with this type, but do wonder as there has been shown to be a connection between mast cell disorders and this type of POTS. I recall reading somewhere that beta blockers should be used with extreme caution in patients with hyperadrenegic POTS. Indeed, I had my first few attacks of anaphylaxis while on BB's. I improved so much when I got off of them. If my information is correct, it does seem like it's important to know what type of POTS we have as the treatment options would be different.

I learn so much from everyone & appreciate a forum where we can share ideas. I also appreciate Doctorguest's openess & willingness to learn with us. I don't see alot of other docs here.

Ernie, my son has NCS/NMH and he passes out every time he has blood drawn. He obviously perceives this as a stressful event. Indeed, a drop in BP due to stress is a well-known symptom of NCS/NMH. The WHY is a different matter. Perhaps Doctorguest can enlighten us.

Julie

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Mack's mom, what you are referring to you is one study from Vanderbilt that showed that some patients have both mast cell disorder and hyperadrenergic POTS. http://www.ncbi.nlm.nih.gov/pubmed/1571078...Pubmed_RVDocSum In this case, because of the mast cell disorder, not hyperadrenergic POTS, the use of beta blockers is not recommended and can actually be dangerous (because beta blockers cause constriction of the airways, and because they also interfere with the effects of the Epi-pen, should there be a need to use one). Otherwise, if you don't have a mast cell disorder, beta blockers are perfectly safe and very useful in patients with POTS, including hyperadrenergic type.

If you reacted to beta-blockers with anaphylaxis, the simplest explanation may be that you're just allergic to that class of medications. Other possible explanations may be that you have an underlining asthma, an attack of which was precipitated by the beta-blocker, or that you, in fact, may have a mast cell activation disorder, but remember, that this has to be diagnosed via urine test positive for a specific substance, called methylhistamine. Otherwise, flushing by itself does not constitute a diagnosis of mast cell activation disorder because it is a common sign of POTS.

As to why emotions can result in syncope or tachycardic spell in patients with POTS or NCS, the general explanation that I can offer is that emotions, an internal stimuli, affect the autonomic nervous system in the same way as heat or gravity, external stimuli, do. Healthy people react to strong emotions by increasing heart rate and blood pressure, but in patients with POTS, there may be an exaggerated heart rate response, while in patients with NCS, the baroreceptors sense the increase in blood pressure and paradoxically over-react by causing a precipitous drop in blood pressure with a resultant syncope. Of course, the mechanism is more complicated than this, involving communication between the brain, the brainstem, the peripheral autonomic nervous system, various neurotransmitters, including norepinephrine and epinephrine, as well as the baroreceptors of the cardiovascular system and the peripheral blood vessels. If any of these components are abnormal, either in function or structure, the entire system will malfunction, and the response to common internal or external stimuli will no longer be normal, causing symptoms and signs of a disorder.

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Doctorguest,

Thank you very much for your explanation. From your description I now understand that emotion is a stimuli in the same category as gravity and heat. I also understand that for some of us, it's like we don't have a stop in the loop so when a stimuli activates our autonomic nervous system we are stuck for a while in a non stop viscious circle.

In my case, being supine stops the loop.

Thanks again.

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Doctorguest, Thanks for that clarification: BB's are safe for hyperadrenegic POTS, but not for patients with MCAD. Thanks also for the info on MCAD & your insight re. my reaction to BB's. Luckily, my epi-pen worked fine. Another was necessary in the ER. BB's for me, worsened my elevated HR and set off horrible allergy symptoms, including anaphylaxis.

Indeed, elevated methylhistamine is one possible laboratory marker for MCAD, as well as repeated attacks of anaphylaxis, intermitently elevated serum tryptase, etc. I'm learning all too well that the diagnostic criteria for MCAD is evolving and that the vast majority of physicians are not familiar with this disorder- in much the same way that many physicians aren't familiar with POTS, etc. (Why can't anything be easy???) I am extremely lucky to have an allergist, formerly of Mayo who studied under Dr. Joseph Butterfield, who is helping me sort this out.

Julie

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You know i have come to the conclusion that we are all like snowflakes, we all have similarities but are all different. What works for one doesnt always work for another. And our symptoms seem the same but are still a little different. But we are all in the same boat just like a bunch of snowflakes.

Just a little silly something. Hahahaha. :lol: Have a great day

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Can someone tell me,what the ear marks are for hyperadrenic POTS? I do have POTS,don't know what kind?

Thanks Pat

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  • 2 weeks later...

It's always wonderful to see people talking on the DINET forum about exactly what's on my mind! Deep bow of thanks to the Universe who always places me at the right place at the right time.

For the last few months I have been experiencing facial flushing ... at first I thought it was my perimenapausal symptoms, or my thyroid disease acting up ... but it seems to be more along the line of reactive hypoglycemia (also related to POTS) so I am beginning to think this fits more in my dysautonomia camp of icky stuff to live with.

And not that my two cents buys a bag of beans ... but the issue of SSRI's is controversial enough that I really appreciate anyone (bow to Sister Tearose) for standing up and helping us get all the facts so we can make our own informed decision along with our personal medical team who knows our unique situation. If I recall, the Italo Biaggioni, MD article on Hyperadrenergic POTS pretty much nixes beta blockers as a treatment option and in some cases the SSRIs can have the same side effect -- which is why at least ONE of my doctors said he would NEVER recommend SSRIs in my case unless I was hospitalized to monitor how my body would respond. We all know from experience, one size most certainly doesn't fit all.

If anyone has any practical tips on flushing ... I'd love to hear personal tricks of the trade.

Good thoughts for everyone on their healing journey.

~EM

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I'm having trouble getting the link in the second post to work. I, too, would like to know what are some signs/symptoms of hyperadrenic POTS, and what the other kind(s) are. I'm looking on this website but not finding it.

I'm curious because my doc put me on Effexor and I had a really, really bad reaction to it which surprised her. But if POTS is related to norepinephrine (sp?) then maybe that's why....

jump

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