Milliesgirl

This is what happened to my niece. Doc afyer doc missed it until he ,just happened" to be in her hospital room and saw it occur. She has lupus. But she also had some bad habits that contributed to her immediately having a quintile bypass. I'm sure its pro ably rare though. So don't freak out!

This happens to me too. My laying down bp is higher than sitting with a brafy hr. and then standing hr jumps 50pts and is hard to feel. Can't get a np reading. Headache too. Earlier my np wad 149\120 and while diastolic is down, systolic is all over the place.

What causes sudden hypertensive crisis climbs up to 200+/115, (sometimes while in the hospital!) with worsening of brady 40-43 (normal now is 55-60) It happens with serious pain from injuries from syncope (why I went in usually) or stress (happy kind more than unhappy). . I've scared the heck out of docs and nurses with this phenomenon. How to get bp down without stopping heart? Carefully, lol! Taking 5mgs of amlodipine and a little Toprol xl because I can get very tachy sometimes too. Cardio PA says, "its just how POTS is. See ya in a year!"

The only time I felt great was after I delivered my second baby. Had nothing but nitris but a tough delivery after I sailed through labor. After I came off the high, I kept getting faint. I think that's when my POTS actually started. They (nurses anyway) thought I was hypoglycemic. I couldn't eat enough food! Doc poo-pooed it. It seems to happen alot with strong drugs too. I'm super sensitive.

Kim, thanks for the support! Ive asked the PA if I need a further testing to determine whats causing it but she said no bev3ause and shes worked with POTS for 20 years. Ive had lots of imaging tests but not the norepinephrine test. Though I had a MRi to rule out adrenal tumors several years ago when I had an episode in my former GP's office. I'll never forget it. He kept telling me that what was happening was Real and not in my head. But my (late)hubby was ticked because it was supposed to be HIS appt. Maybe its memories like this that anger me. , But probably, the adrenaline from being furious with him during an episode has saved me many times too. Literally experienced abusive neglect so many times, so take my complaints with a grain of salt...oh, no pun intended lol! I will seek out someone else (doc not husband ?)

Went to ER to have my knee examined 1 day after I fell during a sudden bad faint with vomiting and bowel loosening. I'd never had the nausea like that before. And the whole episode came on so fast!But I'd been outside for several hours. Not doing anything strenuous but potting flowers. While @ ER my hr was in 40,s and bp steadily rose to 225/115. Just laying there! Why? They finally gave me 2 doses of hydralazine and sent me home, upping my amlodipine from 2.5 to 10mg and stopping metaprolol. When I asked why I fainted (bp or hr) they said my hr probably dropped suddenly. My cardiac PA said POTS is like that and said she didnt like taking me off the bb, but that only during the ttt did my hr jump severely so just watch and see. And see you in a year! I guess I'll just be my own doc.I found that 10 mg of amlodipine (Norvasc) was too much and am back to taking 5 mg as I've done for years. I've felt quite depressed since then. Thats 2 serious injuries in 1 year from fainting. The first broke my back. The knee is better. The **** with docs. Other than getting refills, and only because not doing anything would leave me feeling hopeless, I dont believe them and could care less about wasting my time going to them. Whats the point if they just don't even try something else?

Well, My appointment went pretty well. The PA was very nice. We did do a sitting and standing BP and it was relevant. Dropped 23 points in 30 seconds. She took me off the amlodipine (Norvasc) and started me on Metoprolol (long acting) beta blocker. My BP is too high all the time except during a crash when it goes to something in the healthy range lol. But still big (40+) swings which isn't good. After all the research I've done I still didn't understand what bb's do. She explained that it helped block the erratic signal between my brain and heart. (found out later she was talking about epinephrine) which is why she didn't need to do those tests, I guess. I asked about blood volume tests and she said She didn't need it at this time. Just drink fluids and in Any Form except alcohol or much caffiene. Not just water. Water dries my mouth out. Sounds stupid but it washes all my saliva out and I feel like cotton mouth. She's worked with POTS for 30 yrs! I was stunned, as we so often read here that so many docs don't know what it is! I mentioned my EDS as a possible explanation but still got that brush off. Said to go back to the rhumatologist for that. That's a bit frustrating. Not that I expect her to do something except chart it Maybe? Be a little interested? Typical specialists . I think she was surprised that the heart clinic I went to 5 years ago did everything EXCEPT a tilt table test though. She didn't think I had to worry much about compression hose unless I wanted to just get a cheap pair for those hot days. I don't pool badly. Yay! She's hoping we can stabilize my BP to 130-140 but she knew it might be tricky. I took her the database of my vitals which she thought was amazing, but then cautioned me about overwhelming myself with too much reading and charting because of all the confusion about the many concomitant conditions. (I felt a little foolish) but her colleague told me to go Google it . (She was like, " he said What? That doesn't sound like him. He must Be had a bad day.") So yes, I probably went overboard, but mostly I'm just fascinated by it all and I think my research helped! She understood though because after 39 years (post delivery of my daughter), I finally know what this is and tips to help myself. But, I think I will now redirect my energy to more fun things for awhile and hope this settles down. Hoping you all find good help too! Wish me luck and chime in if anything sounds familiar. I'll check in on ya!

Thanks Dizzygirls. Kinda what I thought too. Shut up for a bit and then use info for questions maybe? Sounds like you have your hands full! Good luck at your appointment to! Bless that Fibro doc of yours for her caring!

..Seeing cardio physicians assistant tomorrow. I have been taking my BP w heart rate regularly since my tilt test (borderline pots) several weeks ago. I learned about poor mans tilt here and was curious. I will take my readings along to show him. Wondering at what point to bring up those findings; after he tells me what THEY think or are going to do? What if I disagree because of my findings (I want to determine if I think they are really knowledgeable about dysautonomia or not?) Trying to tell docs about stuff is usually NOT appreciated my experience here.When I try, I often get shut down. Cardiologist wouldn't even listen to me when I told him I had Eds on first consult and wondered if it was relevant. He dismissively and almost angrily said "we don't deal with that here!" We outsource to Mayo for that" He didn't even chart it! But, I have not met this PA but can you see why I'm anxious to talk now? This is what's happening. I think I need some volume tests and the epinephrine test at least (if I understand protocols). Think I have PAF or NOH with supine hypertension. BP Readings are always high laying down with hrate 50-60. Last night while watching tv in bed BP jumped to 182/91. HR of 60. I was very thirsty, so I was probably just dehydrated. Got up and jumped around to get blood moving and got more to drink. BP came down immediately to 139/84 w/hr of 80. Took a bit of Xanax. Slept good! Better today. Sound familiar to anyone?

katybug, have you ever asked your doc, while lightly touching say, your elbow area or outside of ankle, "should this hurt? And they just say , "No" and dismiss it? I have bursitis in lots of areas too. Interesting what your doc said about pain too. I think some of us (me anyway) don't even KNOW where all we hurt! No wonder were tired, huh?

I have EDS and some sort of dyauto (still figuring it out). I know I can't have MSG at least. Its so embarrassing to get those horrible diarrhea attacks before you get out of a restaurant! Even if they didnt use MSG. Have wondered if its oils they use? Soy maybe? It happens at home too. Last time I was trying to rest on floor during it as I get so faint from extreme pain, and I bonked my head, before I got down.Nice gooseegg! I thought my bowel was going to rupture! I've also vomited from extreme spasms during those times. Very sore for a few days after. Mainly I have constipation so these attacks are something else! (sorry to be graphic) I (internally) laugh when friends complain about getting ready for colonoscopies. Welcome to my (normal) world, I think.

I passed on a trip this week with my k7ds to Puerta Vallarta because I was afraid of heat/humidity. Are the vests worn under clothes? Are they bulky? I'm getting so heat intolerant!Hot then cold then hot.... Do they come in bathing suits? Lol!

Í believe I was bitten by a brown recluse spider several years ago. The symptoms fit as it was extremely painful and my ankle turned deep purple. From what I was reading it looked like spiders can carry Lymes? At least there were link outs to Lymes but no mention direcrtly. Anyone know for sure?I think they did a Lymes test but after I was given antibiotics. So test was negative. Since you had so many bite born illnesses, can you tell me (or anyone) if they can retest now? Thats when my symptoms got worse! Now I have positive but borderline POTS per ttt (but Im hypertensive with drifting bp) so dont know what doc will do. Dont see them for 2 weeks. Sounds kinda like you. Drifting bp I've discovered by careful home bp monitoring. Will follow this thread to learn more. Hope you find answers! Gentle hugs! do salt. Never heard of salt and vitamin C!