Possible Pots, Exercise Intolerance + Broken Fight/flight

[KevInChester1]

Hi everyone.

I have a lot of the symptoms of POTS

• Feeling faint after standing from supine position (heart pounding, low blood pressure?)
  

• Fatigued all of the time
  

• Exercise intolerance - I can walk for miles upon miles, I have never been able to jog, most I've managed is around 1 mile. Oddly enough when I was younger I always tried to jog with a friend. I'd make it around 300 metres or so, day in, day out. One day I managed to jog for a mile, I even sprinted at the end and felt great. The next day I was back to how I always am! Also never really been able to do push/press ups, no matter how strong I get, feels like all the blood rushes to the wrong places.
  

• Excessive thirst, salt craving, abnormal dilation of pupils, depression, anxiety, touch/light/sound sensitivity, brain fog
  

Though a couple of things have always bothered me, and I'm wondering if they could be related to POTS, perhaps Norepinephrine related or something. I've always felt like I was stuck in 'flight' mode. Whenever a situation calls for adrenaline to be present, perhaps a fight when I was younger, I just couldn't do anything but run, even if I knew I could win. Now certain people would take advantage of this to bully etc, though if I was pushed just enough I would lash out. I would then instantly be back in flight, I would get one flash of anger and that's it. Nowadays I don't get into those situations often, but again if pushed enough I will lash out - not really at people but at things. I then instantly regret it, there is no residual anger, no follow through, just complete regret and despair. Anybody recognise this?

I've taken 2 drugs that have affected Norepinephrine before, and both made me crazy - Nortriptyline and Strattera. Both were taken for ADHD, and both did virtually nothing but make me feel angry and more liable to lash out. The former did something with my blood pressure/vestibular system too. Currently on Dexedrine which seems to help me very slightly, but then leaves me even more tired and lethargic straight after. I plan to bring POTS up with the specialist on my next visit.

Edit, sounds odd but may as well add this: When I was coming up to my first birthday I got badly burned on my chest (10% or so I believe), was in hospital for quite a while. I'm now 32, but wonder if that could have set something in motion, very unlikely but might as well put it out there just in case.

[lumpchp]

Hi there, I'm kind of new to this also but I have done tons of research on the whole dysautonomia subject. When you mentioned that you were burned, it got me thinking... And it is definitely possible that it could have tweaked your nervous system. Burns are one thing that affects your nervous system in soo many ways. And I can relate to that feeling of adrenaline, it seems to always be lurking , I get startled easily, sometimes all it takes is a loud noise, or someone saying my name a certain way. I'm still in the process of getting a more specific diagnosis, all that I know for now is that my nervous system is malfunctioning. I get very dizzy upon standing, my heart rate gets really fast, bp drops, but when i sit down, the opposit happens, bp shoots up, and heart rate drops. I have temperature control issues, hands/feet get ice cold and numb, in 80 degree weather , i sweat too much at inappropriate times, and other times not at all, lotd of intestinal and bladder issues, everything is all **** up.

Pots may be just one part of a bigger picture, so you should definitely bring this up to your doc, just make sure that that the whole nervous system is looked at. From my experience, unless all your symptoms are looked at as a whole, there is a tendency for docs to address each thing as a separate entity, rather than linking them with dysautonomia. Good luck, and I'm glad you found this place, I have only recently found it, and its been a great place for knowledge and support. Keep us posted

Edited October 7, 2012 by corina

[KevInChester1]

Yeah I get startled easily too, well in a way it varies. I always used to get startled and scared by dogs coming up to me and barking (if they were larger dogs), now I'm fine and don't mind it at all. Or if I was walking past a garden and a dog barked loudly at me without me noticing it, again I seldom become startled by that. I however startle easily at other times, certain noises or sensations are worse than others - I can recognise the one about your name being said in a certain way.

I have always tended to be on the warmer side rather than being cold. I can wear shorts in the winter with short sleeved tops and not be that bothered, whereas others are wearing jumpers and coats. If it rains I seldom put a coat on as it's often a choice between getting wet or sweating so much it looks as if I've been rained on anyway (and smells worse I'm sure!) Though just recently I've noticed my temperature isn't quite as bad, still not great though, I'm always wearing shorts unless I have to wear trousers (work etc)

Going to bring this up in the week - my heart definitely starts beating very hard if I get up from a supine position, or if I need to put in a certain amount of effort (walking up hill, cycling on a bike, jogging). I go to Aqua Aerobics and find I can tolerate that pretty well as the water cools me as I'm heating up, and also the water I guess has a slight compression effect. Though anything whereby I have to tilt my head up and move my arms tends to make me feel light headed and uncomfortable.

Thanks for the reply, and I'll keep this up to date

[Valentijn]

POTS + exercise intolerance + the other symptoms also sounds like it might be Myalgic Encephalomyelitis (Chronic Fatigue Syndrome). ME/CFS has all of the symptoms you mentioned, though neurally mediated hypotension is probably more common than POTS, though POTS is definitely also common in ME.

If that's the case, your POTS symptoms might be due to low blood volume.

[KevInChester1]

I do have a lot of the symptoms of ME, however I've felt this way most of my life rather than being a new thing. I remember in school when we had choir practice, I found it nearly impossible to tolerate as I just couldn't stand for that long (in one place). Think in a way this then led to the ADHD style behaviours - acting up etc, so I could get out of doing it.

Low blood volume sounds very possible - especially as it can then lead to increased Norepinephrine. I've always craved salt, and always drank the water from pickle jars etc My fatigue is often really bad, but it can mostly be overcome. It also doesn't stop me from walking vast distances (did 18 miles in a day a few weeks back).

[KevInChester1]

Just bumping this as I have additional information. I've been taking blood pressure readings for a while and have noticed that my BP is too high (145/90 72) sitting, much too high after standing and walking into the kitchen (165/110). My pulse rate nigh on doubles with gentle exercise.

With more intense exercise my blood pressure plummets, last 2 times I took a reading after feeling faint were: 75/50 110 pulse and 109/90 153 pulse.

I'm guessing this is low blood volume? I also have symptoms of EDS (hyper-flexible elbows, shoulders and fingers - and stretchy skin).

I've had 2 ECGs done which seemed fine, a heart scan (echo) and am due to have a 24/7 BP monitor done on Tuesday.