peregrine Posted August 12, 2012 Report Share Posted August 12, 2012 Usually the symptoms that require me to sit abruptly are presyncope - lightheadedness, vision issues, severe sweating and nausea, speech issues, etc. My main other POTS issues are brainfog, fatigue, and the spaciness that makes it hard to navigate day-to-day life.Yesterday, though, I got a different one that I've had only a few times. It felt like my body was getting an adrenaline surge for five minutes straight. I got very short of breath and could barely stand, but no nausea or more sweat than normal for me. I also was very exhausted all of a sudden - it was all I could do just to stand up again at the end. No flushing or anything obvious that might indicate MCAS, though.My doctor diagnosed me as hyperPOTS (with pooling too) based on my TTT (no bloodwork for it specifically). Is this what other folks describe as an episode (for lack of a better term) of hyperPOTS? I do often have little adrenaline surges to normal stimuli - someone walking towards me, someone opening a door in the middle of the night, objects dropping.Edited to add: I took 5mg of propranolol to try and deal with it (my dose is 15mg twice daily) as suggested by the cardiac electrophysiologist. Not sure if it helped, since I had no way to test my blood pressure. Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted August 12, 2012 Report Share Posted August 12, 2012 Sorry your symptoms are changing!I'm not considered hyper, but I have very similar episodes. Tachy, SOB,sweaty, shakey.. Feels like a really inappropriate catacholamines release. Not sure what my BP does though. Frankly, they're miserable! I would consider them my worst symptom. Sorry you have them also Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 12, 2012 Author Report Share Posted August 12, 2012 Mmm, I forgot to add that when I say "adrenaline surge" it's that feeling of pressure? in the heart? not pain, but feeling kicked in the chest - the kind of thing that used to happen when I tripped and almost fell on something, or got really close to something dangerous. Quote Link to comment Share on other sites More sharing options...
Kor1212 Posted August 12, 2012 Report Share Posted August 12, 2012 Peregrine, I get those surgy feelings too. My BP and pulse remain constant during episodes...I've checked. Feels like when I'm about to crash on my bike, but I don't! I had that feeling every time they flushed my IV in hospital 2 months ago. It would cause my HR to go 40 to 140 and BP drop, and Id get really SOB, and would last 2 mins. None of the docs could explain it. Now I know it will go away so I just wait it out, it's a horrible feeling. It also happens when I get emotional...really bad. So I don't cry cuz I feel like that and have chest pain! Don't know if it's NE, cate, adrenalin or what. Seems like it happens less now with my meds,salt and fluids:)) Quote Link to comment Share on other sites More sharing options...
Guest headhunter030 Posted August 12, 2012 Report Share Posted August 12, 2012 I didnt get these until almost 10 years in. They are so horrible, if I touch my neck id flares up red like someone took a knife down it. Sometimes my BP is stable, but sometimes it goes up....not super high but like 150/102 high. Only we understand that feeling. Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted August 13, 2012 Report Share Posted August 13, 2012 I get severe catecholamine surges and mine cause a huge increase in bp, shakiness, chills, sweating, horrific nausea, and a terrible headache at the end. I cannot sit or lay down; I pace around the house, my pupils get huge, and I feel like I'm dying. I definitely get a tight feeling in my chest. I also flush, which can be associated with MCAS but isn't always (sometimes it's just the dilation of the vessels, according to the doctor). Basically, imagine how you feel right after something startles you (like a near-miss car accident) and multiply that by 1000 for whatever duration you experience the surge.The headache and nausea last for days, and I am completely exhausted afterward (not during). Oddly, it doesn't speed my heartrate up that much more than normal, though I do get palpitations while it's happening.The big indicator for me is the bp rise and the feeling of being unable to sit still, which is a common excessive NE symptom, I was told. Quote Link to comment Share on other sites More sharing options...
AdjustingMySails Posted August 13, 2012 Report Share Posted August 13, 2012 peregrine: You mention speech issues with hyper episodes?? Do you mind elaborating/sharing there? ..........Although I've been followed the DINET forum hit and miss for the last several years now, I'm newly registered to participate and contribute to the forum. So, if this has been addressed, pardon me, I've just missed it. BTW, I have hyper pots, thus my query....Does anyone else find the autonomic flushing of such hyper episodes itself to be very uncomfortable, akin to pain?? I get flushing on my face, ears, neck, chest, back--and even a time or two, but just a time or two in the last 12 years, on my abdomen and upper thighs. I have had flushing like this last anywhere for perhaps an hour or so to several hours, and I find it very uncomfortable. Does anyone else experience this? Sometimes, I'll experience such flushing on only one side of one my body, and it's not simply something that I feel, as it's observable--red and hot to the touch, and notably can be seen on just one side of of my chest, back, abdomen, and thigh. Has anyone ever had flushing like this?? Has anyone found anything that relieves the discomfort? Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 13, 2012 Author Report Share Posted August 13, 2012 Mmm, sorry if that was unclear - I get speech issues with presyncope and for several hours afterwards. I've never noticed them in conjunction with the adrenaline surge-like thing I described here - the surge-like thing had none of my typical presyncope issues (nausea, sudden severe sweating above normally high sweat, tunnel vision/greyouts), but I still couldn't keep standing because I suddenly didn't have the strength to do so because I could barely breathe. Quote Link to comment Share on other sites More sharing options...
issie Posted August 13, 2012 Report Share Posted August 13, 2012 The flushing and redness that you are describing that goes along with a "surge" is very indicative of a mast cell degranulation release. Have you tried an H1 and H2 when this happens to see if you improve and things get better? I'm also HyperPOTS and have MCAS that seems to go along with this for many of us. There has been a whole lot of talk on mast cell issues - you might do a back search and see what all has been talked about in regards to this.Issie Quote Link to comment Share on other sites More sharing options...
Guest headhunter030 Posted August 13, 2012 Report Share Posted August 13, 2012 H1 and H2? Quote Link to comment Share on other sites More sharing options...
issie Posted August 13, 2012 Report Share Posted August 13, 2012 Types of histamine blockers - H1 - Claritin, Zyrtec etc. H2- Zantac, Pepcid Also, I've had help by using Nasal Crom - which is a mast cell stabilizer. I use Claritin and Zantac. There are also some alternative supplements that are beneficial if this is the problem.Issie Quote Link to comment Share on other sites More sharing options...
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