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Everything posted by Elegiamore

  1. I went to three acupuncture doctors. Each one of them told me that with my extremely high norepinephrine readings with hyper A POTS, that they wouldn't touch me because they could cause a malignant hypertensive crisis. My experience. I was very disappointed.
  2. After several decades of POTS, I do not remember what "normal" is at all.
  3. It's easy to get a hyper A POTs diagnosis compared to the past, when it had no name and wasn't believed, even by existing autonomic doctors. You just need to go to a POTS center and get tested on a tilt. You are asking for suggestions for running to keep your BP down - YOU NEED TO KNOW IF THIS IS POTS OR NOT. Guessing doesn't work. Alcohol causes high BP in those of us with hyper A POTS USUALLY because we are reacting to the high histamine in the fermented part of booze. Per Dr. Raj (white papers) patients with hyper A POTS, for real, are salicylate sensitive and have severe hypert
  4. I have had many life threatening events with POTS - just got out of cardiac ICU for six days. Weekly I have hypertension so high that AMA standards say I should go to the ER. I have been referred to hospice but refused to go. I sometimes have 90 point swings in my blood pressure, which is very dangerous. I've syncoped at the top of stairs. I get saline x three a week or I get coronary spasms but I'm allergic to heparin, so eventually I will get a clot. I have mild diastolic heart failure which varies between mild and moderate depending on if I've gotten saline. I have coronary spasms from
  5. I got that specific diagnosis when I had a heart attack from Kounis Syndrome - mast cell activation disorder that can come with hyperadrenegic POTS. After the heart attack, I had a heart cath which showed no blockages but spasms were triggered by a drug used to test for prinzmetal angina. As the prinzmetal angina was triggered by mast cell foods and standard MCAS triggers, as well as sulfites, I was diagnosed by Emory and Vanderbilt with Kounis Syndrome/prinzmetal angina or coronary spasms from allergic causes. Very high norepinephrine is also a factor in these coronary spasms events, they t
  6. I got POTS when I was 20. I turned 60 this year and I have gotten progressively worse. All cases are different.
  7. Got POTS at 19 in 1973. I turned 60 last week. Just got out of the ICU cardiac after six days from making a very minor mistake. I only get worse. I think it's best to face the truth that nobody can tell if you get over POTS or not; it depends on your cause of the illness and endless other factors.
  8. I'm on 15 mg remeron and it saved my life, as I simply didn't sleep, even on four drugs, before it. Now I can sleep 5-6 hours a night - HUGE improvement. Also, I have mast cell activation disorder with my hyper A POTS and remeron is a VERY strong antihistamine. Taking it at night allowed me to lower my histamine, part of why I stayed awake. And lowered my BP. I've gained 60 pounds. Even so, and even being hungry every second of every day, remeron has been one of the most important GOOD moves I've made in the last 30 years of POTS. For me, it has been a wonderful blessing.
  9. My coronary spasms have been caused by mast cell activation disorder and my hyper A POTS. It is basically an allergic cardiac event. Kounis Syndrome is the correct name. Again, it is part of hyper A POTS with MCAD and EDS III, not standard POTS, in my case. I now take zyrtec, zantac, atarax, remeron and have constant saline - this has stopped the coronary spasms. Unless I got cold, eat the wrong thing, exercise (cleaning a bathroom, for instance) and it comes back as part of POTS. I just had a six day ICU stay from coronary spasms/very high BP because I reacted to an antibiotic - now I
  10. I'm so glad you can all have companionship and support. The hours alone of silence could be broken by talking to your pets - and not being nuts! lol! I am so jealous of you all. There is NO WAY I could take care of a pet. I had a lovely cockatiel that I loved so much 20 years ago when I had my first year that I was unable to work. As there wasn't an Internet, he was a Godsend. Then I had to admit that I could not take optimum care of him. Syncoped to clean his cage; wasn't able to clean up after him properly; trouble getting his supplies that he liked, etc. Eventually my friends (I had
  11. Has anyone NOT been told they are nuts? Every POTS patient I know has been told this.
  12. "ablating the nerves at the ganglia for excessive sympathoexcitatory responses in hyper pots" - I've researched this extensively, as a bp of 250/140 is not unusual for me, unfortunately. This won't work for Hyper-Pots BECAUSE...they believe that the procedure itself will affect the body's ability to control BLOOD VOLUME! They are already telling those that have had this ablation to be super-careful the rest of their life to stay over-hydrated. Something most of us can't do. So you ablate yourself and then have trouble maintaining blood volume - your NE goes up and you are right back where
  13. Same problem here, but I have hyper-POTS so my BP usually errors out when it is too high as WELL as too low. I called a manufacturer who told me that the problem is low blood volume - the machines cannot pick up the sound of blood rushing as it is so little going through it. So I would NOT assume that you have real low bp when you error out - that might not be the case. The bad part is that during the times we are most ill and need a bp measurement, the dang thing isn't working!
  14. Michelle, so sorry about your challenges; my heart goes out to you. Yes, the Catch 22 of having bucks to get tested for disability is tough. With me, I HAD TO GO get the expensive tests, go to Cleveland Clinic and both Mayos, because I WAS repeatedly in CRITICAL condition. So the money had to be spent, the tilts and other junk had to be done, whether I was broke or not; no hospital in my city of 5.5 million could help me. But those tests helped me get approved first time through without a "no," along with extensive documentation, letters and failing the SSDI physical (thank goodness I was so
  15. In the same age boat with blue but I'm thinking that it's just because there are more boomers than any other age group; a coincidence. SO SORRY about the relapse. I relapsed over and over until I just stayed down and never came back. But I kept trying to work and hitting a wall, so that was my bad, for my entire adult life. Maybe you can learn from me and quit while you are ahead. You can be assured that you will have a unique dysautonomia journey; maybe this is your last relapse and you'll be back on your feet (literally) soon...or not. It's an individualized disease. There is no telling
  16. And I had a terrible, terrible effect from the SSRIs. I was on Cymbalta and Paxil with negative results. Then I couldn't quit taking them: severe headaches and muscle pain. I then got on Effexor. It really helped the brain fog and fatigue. But within six months or so, I developed severe hyponatremia from the Effexor. I was hospitalized at the Cleveland Clinic for nine weeks to no avail. About seven months later, I began to hold salt again (I always had had low salt anyway). I have hyper-adrenaline POTS so that may be a factor in my failure to tolerate these meds. Just wanted to point o
  17. I would wonder if she was using a chemical on her hair or had a reaction to the chemical soup and stink in most hair salons? People with MCS reach a limit to their ability to handle toxic chemicals suddenly some times; I know people who have had seizures from these situations. If she was actually using a chemical on her scalp, which absorbs so well it is sometimes used to absorb medications, then you might have a clue. You are a great sister and I commend you. Good luck to your sister and don't stop searching!
  18. Hi - GENERAL anesthesia, which you had in your surgery, is NOTHING like the twilight stuff they sedate you with for a conoloscopy. General Anesthesia affects ADRENALINE. For me, it was so dangerous that I was hospitalized for nine weeks just to have my tubes tied from the anesthesia. But the colonoscopy stuff is NOT the same and didn't phase my POTS or ME. So go for it! Good luck.
  19. I'm so sorry you have something "new" to deal with but frankly, a bp of 162/115 is NOT DANGEROUS and doesn't cause a stroke. I know it is scary as it is a new complications, but it is really not a biggie short-term at all. Normally my bp is it 170/100, even taking overdoses of bp meds and clonidine, on a good day (hyper-POTS). I don't worry. I have had spikes of 250/142 yet was sent home from the ER when lowered to 190/110. An ER will laugh at a woman (not a man) who enters with bp of 162/115 and thinks they had a stroke. They've laughed at me with much higher bp and sent me home. Witho
  20. I've had my port for 18 mos. and no pain whatsoever. Except, of course, it gets sore from the needles as I get saline three times a week now. But no pain. I don't want to worry you, but this is how infections start per my infusion center; usually right after the port is put in with pain. You may not have a temp for some time with an infection. By chance, I met a guy in the infusion center last week that had NO FEVER until the port was flushed the 4th time - then he had pain and a temp of 104 within an hour and almost died; was in intensive care for two weeks. The infusion dr. STILL didn't
  21. OMG, my heart goes out big-time to all of you re: this subject. Because it is the worst part of this all, short of dying. I wish I had a positive answer on this one, but after decades of POTs and more, moving into shut in territory and conversations about going to hospice, my last friends (from childhood, no less) finally left. Dana has it right, unfortunately; and this nails it: "i just think some people don't have the maturity to handle things when it hits the fan. and, as issie said earlier, that is NOT my personality at all. i tend to extend myself greatly in relationships, which usually
  22. I'm so sorry it didn't work out for you. It's so sad...for all of us without Cadillac insurance. In my case, I have paid out of my pocket for a majority of my autonomic clinic treatment. Here's what I did: I got the treatment I needed. I waited for the bill. I then called the financial depts. and asked for: 1. a big discount if I paid in full that day (only worked if I only owed $1000-2000, of course). 2. Usually I worked out a payment plan. It took me eons to pay the Cleveland Clinic and Mayo off. But without the Cleveland Clinic, I would have been long gone by now. I had to pay fo
  23. I got this goodie from my nurse sister-in-law inside of a get well card today. I want to share: "These are actual notes from Doctors' patients charts... 1. Patient has chest pain if she lies on her left side for over a year. 2. Patient has two teenage children, but no other abnormalities. 3. The patient has been depressed ever since she began seeing me in 1993. 4. Discharge status: Alive but without permission. 5. Healthy appearing decrepit 69 year old male. Mentally alert but forgetful. 6. The patient refused an autopsy. 7. Patient has left his white blood cells at another hospital.
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