Please share your story..
I'll try.
First the 'good news'. It would be impossible to have POTS (Dysautonomia) and
not suffer from increased anxiety or symptoms presenting as anxiety. This will be experienced as:
A)
Involuntary: Random bursts of anxiety or panic attacks for no reason including in your sleep. This plagues me. I'll wake up and for about 5 second think I'm going to totally freak out and get a bounding uncontrollable heart rate and go racing off to hospital, think every bad thought imaginable due to this 'feeling' and then it totally passes, and I got straight back to sleep! Or I get these sudden bursts such as typing this now, like feel I'll run out the door when totally chilled out. It's very nasty.
B)
Reactive: Stressor and anxiety or panic response to this. E.g in POTS if there is wild weather, a sudden knock on the door by the mailman, the phone rings and makes you 'jump', this can trip me over the edge and I'll freak out.
What puts me in hospital is if I see or witness a stress that I cannot get away from. E.g If the neighbor starts karate kicking the parking attendant (visual stress) and yelling, it sets my anxiety of. I rationalize that it's their issue and nothing to do with me, but seeing two people beat each other up, will give me chest pain even if I shut the curtains, too late it's set me off and then I have to deal with that emergency of my own.
Reactive stress arouses your CNS and dials up the the flight or fight response even if you aren't ''scared'' at the time. In someone without a CNS disorder, who cares if two guys are beating each other up. But in Dysautonomia this 'alerts' your brain to either join in the scrap or run away into the forest. Being able to do neither as you're disabled, in a billionth of second your brain has calculated all this and instead feels stressed and thus the symptoms cascade into anxiety or worse.
Same goes with driving a car, e.g. I remember driving with undiagnosed POTS and if someone cuts me up, I'd get immediate chest pain and have to stop the vehicle and pull over for a minor near miss. As it got worse I'd get beg my passenger to drive me to hospital it was so bad. From then on I had to not drive or drive nice and calm not like a 'young person', as I had been.
C)
Severity of anxiety for what is happening to you Vs 'how you used to be' and frequency how you may feel nervous and subsequently freak out. As explained above, the level your body can freak out, becomes totally deranged
I've ended up having convulsions from just choking on food, when other people would just go a bit red in the face and get slapped on the back, drama over and the meal continues after a few raised eyebrows.
So I would probably in this respect alter the word anxiety to severity of
arousal. Imagine your brain in POTS is like a primed hand grenade wired into your sympathetic nervous system, ready to pull the pin at any time, without your consent, or if you did consent, it was a marginal reaction not a demand for a full air-strike which then occurs.
The bad news is there's little you can do about it as the same part of your brain involved in these horrible symptoms are caused by your autonomic nervous system being dysfunctional and your sympathetic nervous system becoming hyper reactive and 'over aroused' by consious and unconcious triggers - hence you now suffer
from symptoms doctors would mistake for an anxiety disorder/panic attack. That doesn't mean patients
cannot develop both of course, e.g. a psychological overlay in addition to POTS.
If your anxiety/panic events keep happening and your doctor cannot explain them though, or you can't get to a doctor or don't have one even, here's a few things to consider may be causes other than POTS alone:
*Nutritional status. Low B vitamins, especially B6 will impair your CNS function in a neurological condition more noticably than someone with 'just' low B6 who is otherwise healthy. I would also test for the much neglected Vitamin E. If your diet is fantastic and you eat lots of fresh fruit, vegetables, nuts etc then it's probably pointless however. Still, mayy PWME/POTS have poor diets due to the fact they're either allergic to so many foods, or feel too sick to eat a wide balanced diet. I would also add in Essential Fatty Acids. In PWME these seems to be terribly low for lots of people, so if your Omega 3 level is spectacularly low you may well start suffering from some weird neuropsychiatric symptoms that you think is 'just POTS' which is actually caused by some form of nutritional problem.
*Allergy. Allergy and POTS go hand in hand, as they do with ME. If you have chronic allergies it usually shows up with an unspecific test called Immunoglobulin E. If transient and you don't eat an allergic food or other trigger (house dust) it won't show up, also consider not all reactions elevate IgE and can instead be a T-Cell reaction which to my knowledge isn't tested for so will be missed. Since I developed so many food reactions, I had no idea that not only can food allergies can not only give you allergic asthma,
but they can also make you very dizzy (confused for POTS) and also nervous (also confused for POTS). So chomping down on grannies brownies and consistently getting vertigo afterwards isn't necessarily an autonomic dysfunction from eating food, but may also be an allergic response if you then have other symptoms such as sneezing and burning lungs, itching, watering eyes, splitting headache, migraine etc. So if the anxiety is maybe linked to that, you could always try and IgE blood test, preferably a finger prick one you get from a lab and send in via 24hr mail. I say that as then you can store them in your home (coldest room) and then when you've recovered from a reaction you can hopefully send your blood off to get tested rather than get a doctor to test it 4 days later and it's normal.
*
Partial seizures can cause you to suddenly feel a sense of impending doom, or anxious for
no reason although that wouldn't be the whole day obviously.
*
Caffeine loaded drinks. I've got palpitations and tachycardia with some nasty subsequent chest pain before when I drank 2L of Coca Cola as I was too weak to eat, won't be doing that again.
* Eating lots of carbs and then crashing your blood sugar after an insulin spike - reactive hypo. In my view, a perfect recipie for someone with a wonky ANS to freak out or feel nervous between meals or at night time if you're eating jam donuts in bed.
*Side effects of medications especially those that affect brain function. It's not uncommon for
CNS supressing drugs, as a side effect, to cause anxiety. E.G. Lyrica. You can also get rebound anxiety after take a short acting sedative as it wears off, e.g. Vallium.
*Check your pituitary hormones are at the levels they should be. Low or high hormones can cause anxiety, sob, palpitations,dizzyness masquerading as something else.
*If you randomly get mega huge surges in BP and Pulse that put you in ER/A&E and are unexplained although this is 99.9% likely to be POTS you can get a condition called
Pheochromocytoma which is what all 'old school' (well trained) doctors will know about, and I'm sure you've had that done for POTS was diagnosed anyway. It's a 24hr urine test and extremely rare but worth remembering.
*The basics if it keeps happening and hasn't been done, a
24hr ECG and ideally a
echocardiogram if a doctor thinks this is necessary.
Hope you get some answers or if there are no clues to solve, learn to 'adapt' to this horrible symptom/set of symptoms.
