Ok...so I Understand Why They Always Think Anxiety

[erikainorlando]

The last couple of days...well..today I feel awful. If I didn't know it was POTS, I would be running to the hospital. For sure! My chest hurts, difficulty breathing, dizzy, feel like I am dying....can feel heart going crazy.

Now, I know if I was a doctor at the ER I would say anxiety....it is funny isn't it...afraid to even say how awful I feel because even I know it sound like anxiety...without the anxiety feeling..

Just seeing if anyone relates. Erika

[MamaTrain]

When mine first started last December I just remember everyone saying "oh it's anxiety" and sending me on my way! I wanted to scream at the top of my lungs "this is NOT anxiety you MORONS!" Somedays I wonder if my body senses something is wrong (like a high HR) and then reacts like it's anxious...that's just biology as far as I'm concerned! LOL!

[Elenapap11]

Erika last year i went to the ER 5 times in a month.I thought that i was either having a stroke or a heart attack...or something that is killing me.In the hospital the doctors kept telling me that i am alright and that i was having panic attacks.I tried to explain that i have no other stress than my deteriorating health but it was obvious that they weren't listening.The last time i went back home feeling humiliated and angry.I couldn't stop crying.I told my boyfriend that it's the last time i go there and that i'd rather die than face these ignorant, short-sighted people.And indeed it was the last time.Since then i have had some really bad crises and even fainted twice but i prefered to stay at home and deal with it on my own.Thank God my family and partner support me and that has made the bad days-the ones that i feel like i'm dying-a lot easier.Love and support on all levels is the best medicine.

Lately i have seen improvement but during september and october i felt exactly as you feel now-and that was every day,throughout the day.

Hang in there.Try to remain calm and things will get better.And avoid negative thoughts and feelings because it makes the crisis worse

Hope you'll soon feel better

[delphicdragon]

The reason it feel like anxiety is because the POTS reaction we go through exactly mimics a panic attack.

Standing too long causes a rush of adrenaline. This rush is meant to prevent us from passing out because our blood pressure is too low or we're hypoxic. When you have a panic attack, you get a rush of adrenaline too. This was meant to allow us to escape if we were being chased by a lion or something. With panic attacks the trigger could be a thought or a smell. With POTS it's our brain's craving oxygen. Once the adrenaline is released, we get tachycardia, nausea, pain, difficultly breathing, etc. The adrenaline rush was meant to allow us to run away - so we feel like we're running, but nothing is chasing us!

It's an evil system. What's awful though is if Doctor's see us with panic attack symptoms, they assume that's what we're having, not an adrenaline rush. They assume a psychological cause, not a physical cause.

I had a seizure due to my blood pressure being 0. I was diagnosed with anxiety because they must have "read the reading wrong" and when my position was changed (feet up in the air, my BP came up) It's ignorance on the part of the doctors. If you go to the ER, have someone who supports you go with you so they can explain what's happening. When the cardiac symptoms get bad, I go to the hospital that has my endocrinologist (who treats my POTS). Though she usually brings the entire cardiology wing down to "learn" about POTS, she makes sure I am treated with respect. Having an advocate helps.

Sara

[extern14]

I can totally relate. I spent three years going from doctor to doctor and all them telling me that I was depressed and was stressed and that was all. It was so frustrating. I have not gone to the ER so I have not had the experience of them telling me that it was a panic attack but having a POTS diagnosis now may change that. However, I can just tell you that you know different and everyone on here knows different so don't think twice about it. Although, I think most of us are a little depressed but that is because of the POTS not the other way around. It may get better. Hang in there.

[ramakentesh]

Yeah its frustrating - not that the average doctor at the ER would be aware, but in panic attacks there are measureable changes in serotonin levels and turnover in the brain that are not present in POTS patients suffering postural anxiety.

Also this symptom can be reversed very quickly with the introduction of large amounts of IV saline - I doubt it would have the same effect on a panic patient LOL.

[ramakentesh]

My concern with POTS is that we may be predisposed to depression; patients that experience constant anxiety or stress apparent eventually exhaust or deplete their serotonin levels and can experience transiant 'burn out' or depression from low cerebral serotonin. i wonder if the constant sympathetic activity in POTS could result in a similar scenario??

[lissy]

I have posted before about being DX with Generalized Anxiety Disorder which was 6 years ago, I use to always go to the ER for I'd say the past 13 years with these anxiety feelings along with other symptoms they couldn't find a cause for they not once checked my heart rate upon standing they just said it was anxiety and told me to take an xanax which made me feel like I couldn't move talk or breathe and that was 1/2 a pill. They always gave me fluids and send me home until the next time I think they thought I was crazy and I thought they were clueless.

Ram its pretty interesting about the serotonin depletion when my anxiety(feelings started) they were severe shaking and everything but after having them for so many years they are mild compared to that and maybe if it was something getting burnt out that would make complete sense . And if thats what affects your mood and general sense of well being that would be a big clue for me. I feel numb and lack of emotions.

Lissy

[ramakentesh]

Yeah there are some interesting articles on it:

http://www.mental-health-matters.com/index...icle&id=173

[erik]

It seems like the list of potential (probable?) psychological mis-diagnoses is pretty long for dysautonomias: anxiety, depression (or uni or bipolar), dissociative disorders... since hypoglycemia can mimic schizophrenia it seems a severe autonomic disruption could even put one in that ballpark. Plus seizure/migraine mimicking & crossover. If electrolytes go wild, compounded with "extra sensitivity" to electrolytes, dehydration & glucose flux, some crazy things can happen in the mind! Kind of sad/scary prospects.

+++ Oh yeah, ADHD is associated too! Plus this study claims to distinguish "anxiety" by the Beck score (a question & rating system I guess) as opposed to focus on physical signs of anxiety perhaps? +++

I also heartily agree it is really important to consider concurrent conditions and physiological crossover issues (some rather theoretical but some pretty solid). The NET (norepinephrine reuptake) discovery (correlation with both POTS & panic disorder) is hard to ignore along with physiological responses being so similar. The general direction of mental health is away from considering almost anything to be "neurosis" and toward everything having as yet pinned down multiple physiological causes... at least within reason and after making best efforts with behavioral factors. I don't really like saying "my anxiety is physiological, unlike those other folks" or "I've got POTS, not CFS... so I've got a physical sign... ne ner ne ner!"

Bottom line though, even for pure physiological problems, there is almost always something a patient can do behaviorally to better their prospects. That's what it is about in the end, IMHO. For example, with POTS I don't personally care all that much if my heart rate doubles or triples (for me it still isn't into a painful or scary rate) but I care greatly about how it makes me "feel" and how it somehow translates to persistent symptoms that really interfere with my life... most of which basically cross psychological bounds (like central fatigue, feeling panic at times, etc.) or otherwise cascade to real downers! So for what I care about in life, first and foremost, I can't escape psychological things. If my heart rate changed oddly but didn't make me feel lousy... who gives a hoot! If there is some silly behavioral change I can make, even if my problem is "just physiological"... I'm going to do it! I don't really care about the science even... except that it *might* help me manage the results better (or give me a helpful "illusion of control" .

Not to be too "contrarian" but the theories on depression are still rather unresolved. Tianeptine is a working clinical example that counters a simplistic "seratonin" or "monoamine shortage hypothesis" to depression. It's a serotonin reuptake *enhancer*, exact opposite of an SSRI... yet is an anti-depressant. Some opioids and even NMDA-antagonists also end up being anti-depressants. There apparently are even theories that NOS (yes, Rama, nitric oxide! is important to the disorder... as well as BNDF stimulation... etc. Despite how much research goes in to it, and how successful monoamine therapies are, there is more to the story (maybe even future treatments that will work out better and more direct). This doesn't discredit current best therapies, just acknowledges extra complexity behind their workings.

Edited December 9, 2009 by Erik

[avidita]

It is because the physical symptoms of POTS overlap with those for anxiety. This article explains it (see page 8 on Psychological profile of POTS) http://www.ncbi.nlm.nih.gov/pmc/articles/P...?tool=pmcentrez

I, personally, tested high on the purely mental test, so I have anxiety for sure But notice that the norm is that POTS patients rank lower than the general population on anxiety tests that do not consider physical symptoms

[kayjay]

My concern with POTS is that we may be predisposed to depression; patients that experience constant anxiety or stress apparent eventually exhaust or deplete their serotonin levels and can experience transiant 'burn out' or depression from low cerebral serotonin. i wonder if the constant sympathetic activity in POTS could result in a similar scenario??

I think Ram has a point here. For me I think my body/brain has learned to have regular old panic attacks. A few nights ago... I had that old feeling that I was going to die. I took my blood pressure and pulse, both were fine. Finally I fell asleep and was not as sick the next day like I would have been if it were "real".

Your brain is so powerful and mine has now "learned" how to panic-

[avidita]

My concern with POTS is that we may be predisposed to depression; patients that experience constant anxiety or stress apparent eventually exhaust or deplete their serotonin levels and can experience transiant 'burn out' or depression from low cerebral serotonin. i wonder if the constant sympathetic activity in POTS could result in a similar scenario??

That is probably true. Long term anxiety, if left unchecked, is linked to depression. However POTS patients normally have physical anxiety symptoms and rank lower on mental anxiety tests. So, I am not sure how the mechanism of having a high pulse, etc. leads to serotonin depletion, unless it's the H-POTS where stress hormones are circulating in the blood stream at higher levels. At any rate, the mind is a powerful thing and shouldn't be ignored. Not that I can wish my POTS away or anything like that, but I think it is possible to counter the anxiety by products in very productive ways. There are studies on Budist monks during meditation and their serotonin levels are so high that they can literally ignore severe pain stimuli. If you do things like that on a regular basis - CBT, meditation, etc. you may be able to counter any future possible depletion. Some studies show CBT to be more effective than SSRI's like Prozac in the long run.

[erikainorlando]

thanks guys!

I really haven't had that many anxiety feelings...nor have I had too many doc's tell me it is anxiety...but all the same..when I hear my own complaints I would point to anxiety if I didn't know better. But having had anxiety in the past..one can certainly tell the difference of a heart problem and anxiety ...

I guess we just have to fight to be heard at times..which is really a shame as many many times I feel way too sick to fight to be heard......and believed.

Thanks for you all!

Erika

[ramakentesh]

Erikainorlando pretty much hit it on the head.

It is because the physical symptoms of POTS overlap with those for anxiety. This article explains it (see page 8 on Psychological profile of POTS) http://www.ncbi.nlm.nih.gov/pmc/articles/P...?tool=pmcentrez

I, personally, tested high on the purely mental test, so I have anxiety for sure But notice that the norm is that POTS patients rank lower than the general population on anxiety tests that do not consider physical symptoms

One study from one research entity might have been peer reviewed but it doesnt automatically make it correct. There are a number of studies that suggest the opposite which ill reference below. Your convinced that because you rate highly on a mental anxiety test you have anxiety. That may be the case. My point - which I dont think Im getting across well - is that in some patients the brain interprets the sympathetic excessive of POTS (THE physical anxiety symptoms) as something to be anxious about and as a result the patient experiences MENTAL anxiety as a result of excessive epinephrine/norepinephrine.

You cant state that the findings or conclusions of one study represent the 'norm' for all patients.

That is probably true. Long term anxiety, if left unchecked, is linked to depression. However POTS patients normally have physical anxiety symptoms and rank lower on mental anxiety tests. So, I am not sure how the mechanism of having a high pulse, etc. leads to serotonin depletion, unless it's the H-POTS where stress hormones are circulating in the blood stream at higher levels. At any rate, the mind is a powerful thing and shouldn't be ignored. Not that I can wish my POTS away or anything like that, but I think it is possible to counter the anxiety by products in very productive ways. There are studies on Budist monks during meditation and their serotonin levels are so high that they can literally ignore severe pain stimuli. If you do things like that on a regular basis - CBT, meditation, etc. you may be able to counter any future possible depletion. Some studies show CBT to be more effective than SSRI's like Prozac in the long run.

Stress hormones are elevated in nearly all cases of POTS - all forms of POTS ultimately result in sympathetic excess. Again your basing your comments about 'physical' and 'mental' anxiety symptoms on the findings of one study. In either case sympathetic overactivity of any kind may have the potential to deplete serotonin levels according to some articles ive read.

Now Ill pull out some references:

From:

http://en.wikipedia.org/wiki/Postural_orth...cardia_syndrome

'Inappropriate levels of epinephrine and norepinephrine lead to anxiety-like symptoms:

chills

feelings of fear

flushing

overheating

nervousness

over-stimulation

Symptoms of POTS overlap considerably with those of generalized anxiety disorder, and a misdiagnosis of an anxiety disorder is not uncommon.'

From:

http://emedicine.medscape.com/article/902155-overview

Doctor Julian Stewart, an authority on POTS:

'Hyperadrenergic neuropathy

Measurements of plasma norepinephrine in patients with POTS show that supine levels are often "high-normal," whereas values obtained when patients with POTS are upright can be elevated above 600 ng/mL. Accordingly, they show intact or exaggerated autonomic reflex responses. This is manifested in vigorous pressor response to the Valsalva maneuver with preservation of vagal function. These patients often complain about extreme anxiety when upright and having cold, sweaty extremities. Most patients also have true migraine headaches that include prodromes of photophobia and nausea.'

From:

http://knol.google.com/k/postural-tachycardia-syndrome

A KNol by Dr Blair Grubb - another authority on the condition:

'The hyperadrenergic form of POTS is far less common and accounts for around 10% of POTS patients. As opposed to patients with the PD form of POTS, patients with the hyperadrenergic form tend to report a slower, more gradual onset of symptoms. Many of these patients tend to complain of anxiety, shakiness, and cold sweaty arms and legs while standing. About one half of hyperadrenergic POTS patients complain of migraine headaches. Some of these patients will display high blood pressure while standing and most will have blood serum levels of norepinephrine while standing. Hyperadrenergic POTS tends to run in families. There is evidence to suggest that hyperadrenergic POTS is a genetic disorder involving a mutation in a protein that recycles norepinephrine in the spaces between nerves (the intersynaptic cleft). '

And from MAYO:

http://www.medscape.com/viewarticle/705183_8

'Anxiety, somatic vigilance, and catastrophic cognitions were significantly higher in the patients (P < 0.05), but not related to the HR responses during LBNP or mental stress (P > 0.1). We concluded that although anxiety is commonly present in POTS, the HR response to orthostatic stress in POTS patients is not caused by anxiety, but is a physiological response that maintains arterial pressure during venous pooling. Masuki et al.[15] studied 13 patients with mild POTS and 10 matched controls.'

There was something else from Dr Julian Stewart that I cannot find now.

So from all those articles you can conclude that anxiety - both mental or physical - is considered by authorities on the condition who see thousands of patients as symptoms of POTS.

Having now established the anxiety is associated with POTS I again draw your attention to Hyperthyroidism and Pheo. whateveritscalled where hyper metabolisms results in increased sympathetic drive or in Pheo increased stress hormones - both have the prominent symptom of 'anxiety' listed as one of their top three symptoms.

[erik]

"Just anxiety" has a physiology too... and just the "psyche" can do some amazing things (such as exert influence on autonomic processeeees):

http://www.psychosomaticmedicine.org/cgi/c...t/full/63/3/476

I guess the part about the rat's experiencing a rise in temperature from the use of a rectal thermometer (rather than it being caused by the condition trying to be measured in the experiment), is an example of the Tachy's topic of Quantum Entanglement... a case of high level abstract physics. Or maybe the heisendorfer uncertainty principle? I don't know.

Some things are more thoroughly understood experientially than objectively. It is similar when physiological processes impinge upon the psyche (and vice versa) is it not?

No, no, no... I'm not recommending a novel method of helping doctors understand the distinction yet crossover nuances of conditions that blur psychic & physic... I'm just citing science here. Purely objective.

[ramakentesh]

brings me back to the argument that NET gene hypermethylation is the result of a methylase that is related to chronic elevation of stress hormones - cause and effect or chicken and egg?

You are stressed, your body has elevated epinephrine, it releases an associated methylase that eventually causes promoter hypermethylation of the NET GENE promoter and POTS which makes a person more aware of the physiological ramifications of stress which in turn releases more stress hormones... perhaps the key is that tibetan monastry after all...

[erik]

Nasty "resonance". Things hit just the right pitch and the wine glass shatters. Ouch!

He he. I was thinking the identical thing about methylation Rama... almost word for word! It's seems to be the case that, while the "methylation" thing is apparently also part of the body's normal scheme of things to some extent (perhaps even allowing pathology). It is like "self modifying code"... a programmer analogy for those in that field!

In POTS research, "precipitating events" are not solely viral, bacterial, physical. There are cases where psychological circumstances are correlated with onset or sudden exacerbation of POTS. I don't like to leave those folks out of the club as having something to say about POTS as a syndrome. Different ways to interpret such fuzzy concepts.

That NET study that found identical physiological marker, coincidentally in both POTS and anxiety disorder sufferers is fascinating to ponder. In one way, that specific study taken in isolation (which one shouldn't do, but is an interesting intellectual exercise) can interpreted as suggesting:

"POTS and anxiety disorders could just be two variant 'presentations' of the same underlying disorder"

Or "...two somewhat similar pathologies having a common 'presentation adjuster'"

The NET commonality is kind of improper to ignore, as with all the other phsyiological similarities. The "varied presentation" stuff is handy... we all project an illness through different "stained glass mosaics" since were all different in so many ways.

[ramakentesh]

Yeah although the NET thing was also found commonly in essential hypertension along with elevated MSNA responses to standing.

[erik]

Do people often get essential hypertension and POTS simultaneously... as in, enjoy both clinical diagnoses?

[ramakentesh]

I think POTS and panic can coexist but Im not sure. I know that my doctor suggested that POTS and essential hypertension are connected but other doctors suggest otherwise.

Nitric oxide, endothelial disfunction, norepinephrine increases and increases MSNA firing rates are implicated in both. Id prefer essential hypertension ANY DAY... At least its got treatment options that work comprehensively.

I think I read somewhere that hypertension treatments report 90% success rates in control symptoms and elevations in blood pressure - the best reported in POTS is usually a 20-60% reductions in symptoms.

[MommytoSJEA]

I have had them tell me I was having a panic attack at the ER before. It was before I was diagnosed with anything. And it was becasue the only way I could describe what was happening to me was by saying " I feel like you get when you get scared. Like an almost car accident or something. When your heart jumps in your throat and you pulse is racing and you get crazy dizzy" They are like yup...that's an anxiety attack, or thats a panic attack. No its not!!! Not when its happening when I'm sitting on the couch reading or something. Stupid idiots.

~Kelli