Hyperadrenergic

[Dystasysta]

When first finally diagnosed they said it was done form of Pots  possibly progressive and thst hyoer word which explained to them why I had more dudes with very high bp but swings to low at anytime so walk fine line with meds etc. question while it’s Neuro yet my neurologist I see less than I do all my other specialist like my cardio my G.I. and my Mast Cell and that’s always confounded me. The explanation is though it’s my autonomic nervous system the only way to treat it is the symptoms as they affect each organ. Has anyone had issues that as the day goes on my legs become like spaghetti and I can’t walk properly and I need to put the compression hose on yet my blood pressure is not super low. It’s like I’m getting some type of electrical current rushes throughout my body same time usually my eyes get very blurry and I know it’s time for meTo set myself up in my bedroom for the rest of the day or night. No one has really explains so many things to me and this is going on 10 plus years now. When I do have these major autonomic type events it doesn’t seem like anything particular will trigger it more than something else I could just be standing in my kitchen and suddenly from my head down to my feet I get these weird sensations like my body wants to explode and my blood pressure is either going very high or dropping I get a rash all over my body usually just on one side though and my vision blurryAnd I need to use the ladies room right then and there or else not much control does this sound familiar to any of you.

[Pistol]

 

hello @Dystasysta - yes, what you describe is very typical for HPOTS, I have experienced it a lot. In HPOTS our sympathetic NS overcompensates for standing up and being stimulated, so we are essentially in a constant fight-or-flight mode. The symptoms of this response are what you describe: blurred vision due to pupil dilation, elevated BP that can suddenly drop, need to urinate ( bladder emptying is a common symptom, that is why we pee ourselves when scared ) and sensations like electricity in our legs ( the urge to "flee" ). So, as you see, this is what happens when the ANS triggers the dumping of adrenaline. Here is an article that explains it

 What Happens to Your Body During the Fight or Flight Response? – Health Essentials from Cleveland Clinic

For me this used to get so bad that I actually had autonomic seizures! But I have conquered this for the most part. Of course proper medication is essential but even with that I can still get these spells. What has helped me the most is STOPPING whatever I am doing as soon as I notice the first symptom - for me that is usually a pain in my chest and a weird feeling in my legs, like fullness or heaviness. As soon as I feel this I stop doing what I am doing and lie down, no matter where I am. I also prevent anything that I know will trigger it - prolonged standing ( I use a bar stool at the kitchen counter, a wheel chair in stores etc ), exercise ( I only exercise when I am well rested and know that I can rest afterwards ) and stimulation like phone calls or computer time. 

Over the years I have learned to listen to my body and follow it's prompts, and with this I have overcome many of the most dramatic and disabling symptoms. Of course it is not ALL up to us - a carefully and painstakingly tested medication regime was needed in addition to the lifestyle changes and adjustments, so simply doing the steps mentioned is not enough. 

They have recorded these attacks many times on me on both Telemetry as well as EEG - they are caused by excessive constriction of the blood vessels due to too much adrenaline. This would cause tremors, chills, cold hands and feet, racing heart, blurred vision ... beta blockers were not enough to stop them. So what has helped me were calcium channel blockers - vasodilators that can prevent the severe constriction. However - I am not sure how vasodilators would affect MCAS, since histamine is a vasodilator. Are you on H1/H2 blockers for the mast cell issues? 

[Dystasysta]

First I just want to thank you so much for reading what I post let alone responding I’d say you have no idea but I’m sure you do that it means so much to me. Yes I am on very high amounts of beta blockers 80 mg of Korra rag with a calcium channel blocker I think Norvasc. The problem seems to be like you mentioned that I have combination things going so some of the medication can make other things worse. I really related to what she said about stopping what you’re doing and laying down getting away from stimulation even if it’s something as simple as a phone call our music that was soothing two minutes ago. I think by now 10+ years later I would except that I don’t have control in regard to when do you see the text happen but there’s part of me that still keeps on thinking what did I do wrong eat wrong touch wrong etc. etc. Right now I just want them to give me a date for the admit two get the scopes done. I think being in an environment I’m not familiar with as it’s a different hospital and the unknown of how this will be handled versus 12 years ago in my own home in my own bathroom and set up as comfortable as I could be is unnerving me. I am i embarrassed to be like this at this age. I live in the north east there is no lack of medical facilities and it’s still boggles my mind how little they seem to know about the autonomic system. Pistol I want to thank you again and please know you’re in my prayers you youngster with a 🙂