hippychic258 Posted August 8, 2012 Report Share Posted August 8, 2012 JUst curious as to what are some of everyones strangest scariest symptom so far? I have many and will post mine soon, having visual symptoms right now ugh!!! Quote Link to comment Share on other sites More sharing options...
puppylove Posted August 8, 2012 Report Share Posted August 8, 2012 Probably either shortness of breath or purple legs. My dad was with me when I had a really bad shortness of breath/ tachy episode and I think it really freaked him out. Also, before I knew I had POTS when I would go in the locker room after gym my legs were so purple from two hours of standing and everyone would be like "ewww what's wrong with your legs?!". I obviously didn't know so it was kind of scary. Quote Link to comment Share on other sites More sharing options...
Kor1212 Posted August 8, 2012 Report Share Posted August 8, 2012 Mine was this June when I was hospitalized and finally diagnosed with dysautonomia. After starting my IV the nurse flushed it with 3cc NS. This sent me into full blown "fight or flight" response: HR went from 60 to 140, BP dropped to 80/40, SOB, Chest pain, impending sence of doom....I thought I was coding! Of course being a nurse myself and being in my ward ( ICU) I as well as my colleagues didn't believe it, so when it was due the nurse flushed the IV again, this time .2 cc caused the same response! Long story short, I was transferred to a teaching facility and during the week there I did the same thing 10 more times with NS flushes! Now how can that be? Your blood is made of NS. Why such a huge response? Is this a NE surge caused by a change in pressures? Anyway it was scary and a weird response. Don't know if I still do it, haven't had an IV since. Blood draws we're just fine. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted August 8, 2012 Report Share Posted August 8, 2012 Bar none the scariest was the episode I posted about last week after my saline infusion I hope to never experience an episode to that degree ever again. It is a week later and my muscles are still sore. I have yet to find an answer to what caused it........ it was actually similar to yours KOR1212....except I had massive full body muscle contraction.....on the masto site many patients are telling me if you have mast cell issues IV can release histamine.....nasty combo I found out the hard way.....Bren Quote Link to comment Share on other sites More sharing options...
SeattlePotsy Posted August 9, 2012 Report Share Posted August 9, 2012 seizure like episodes that start with dizziness, tachycardia, surges in my chest, facial flushing, cold extremitites, involuntary muscle contractions/myoclonus, can't talk, blurred vision, ...usually ends with vomiting Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 9, 2012 Report Share Posted August 9, 2012 I don't suppose any of mine are strange; strange to others but normal to us. The scariest to me is the lightheaded/seizury head feeling that I get. It just never feels like my head is right, don't know if it's a dimished blood flow up there or what but I can't stand the feeling. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted August 9, 2012 Report Share Posted August 9, 2012 Wow, there are so many scary symptoms that we experience all the time - it's hard to narrow it down... - When my hr goes into the 40's when I'm upright and it makes me cough. I would prefer tachy anyday compared with this feeling. - Once I was sitting at the computer and started to swallow (just saliva), but the flap that closes over allowing you to swallow or breathe, closed right over and locked up so I couldn't swallow or breathe. After the initial terror feeling of the moment, I forced a cough which opened things up again. The funny thing though, is that as soon as it was over, I went right back to the computer to whatever I was doing. It's amazing how unfazed we can be with such a mixed up ANS. - When I wake up with my heart in a 'spasm'. I've not been able to capture this on a monitor, so I don't know exactly what's happening, but I wake up and my heart is stuck in a crazy vibration. It's not a tachy episode (because I get those at night too). It feels like it's not actually beating at all, just in a spasm and it causes me and the whole bed to shake/vibrate. My regular hr monitor can't read it at all. So, I try to take notice of everything that is going on so I can later describe it better to the docs and at the same time try to figure out how to slowly bring my heart back to a normal rhythm because it feels like an abrupt change would not be good at all...scary. Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 9, 2012 Report Share Posted August 9, 2012 Severe spaciness, where I lose the ability to really process my surroundings and just walking down the street avoiding people and garbage cans and cars is an exercise in mixed luck/terror. The others (presyncope, sweatiness, nausea, shortness of breath, palpitations) I feel like I either have some control over, understand why they happen, or have accepted them, but the spaciness (especially when really severe like above) is just a disaster. Quote Link to comment Share on other sites More sharing options...
corina Posted August 9, 2012 Report Share Posted August 9, 2012 For me the most scary thing is my bad memory. It made me get lost twice (luckily I was found by my husband), I have had times where I didn't know how to use appliances (washingmachine/ clockradio/ tubledryer and probably more that I forgot ), there were a few times that I didn't know the person next to me in bed, what day it was/could be and should the kids go to school or might it be weekend? And I've had several times where my fridge was full of food but I didn't have a clue what to do with it.Most of the things have settled down or I've found solutions (when I make my grocery list I write down what to eat and when), I'm not in charge of our finances anymore (I could pay people/bills several times) and we bought a great navigation systen so that I'll always be guided home now that I've re started driving. I never go out without my cellphone. But there still is a lot that I don't know (anymore) and knowing that I don't know is quite scary to me. Quote Link to comment Share on other sites More sharing options...
gertie Posted August 10, 2012 Report Share Posted August 10, 2012 BP drop & fainting or suddenly not being able to swallow or breathe. It's hard to narrow it down to only 1 symptom. Quote Link to comment Share on other sites More sharing options...
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