Jump to content


  • Posts

  • Joined

  • Last visited

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 hypertensive events from aspirin and are unable to clear enough tyramine from their system (from fermented foods and old proteins sitting in the frig and more). I have a hypertensive crisis (220-120 and more) from alcohol because of the tyramines. Your reaction to alcohol reads typical for a patient with POTS and mast cell activation disorder, which you might want to look into. Mast cell reactions, which again might be what's happening to you when you exercise (causes high BP in some and low in others) can cause HEART ATTACKS. I've had two so far. But most importantly, you need to see a POTS doctor - you might be having a mast cell event ONLY. MAST CELL ACTIVATION DISORDERS: can cause hypertension or a reaction FROM EXERCISE. And from ALCOHOL. Best of luck. Most of us have had to drop the huge dollars and effort and go to a POTS center. I've been to Mayo Jax, Mayo Rochester, Vanderbilt and Cleveland Clinic. Good luck!
  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 mast cell activation disorder and very high norepinephrine and have had two documented MIs and probably many more that I ignored and I have damage from those. Not even mentioning gastroparesis and inability to eat or take in vitamins. I have constant herpes and shingles. My last shingles cases caused 12 arteries to burst throughout my body and by luck, none damaged major organs, the last time - triggered by POTS events. But POTS will not shorten your lifespan.
  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 think, because I have an extremely high norepinephrine standing level.
  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 have a list of antibiotics that react to mast cell for the future. Nitro made me WAY WORSE as it just had me pooling constantly. I take it as a last resort for this condition, but I am instructed to NOT STAND UP for six hours afterwards (to avoid POTS symptoms). I have had two heart attacks from this, with no blockages at all. Hope this helps somebody in this situation. I'm a patient at Mayo Rochester, Cleveland Clinic and Vandy.
  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 some local friends 20 years ago - lol) told me I needed to give him up. I found him a wonderful home. My days have been silent since then until I got the blessing of being in an infusion center with real people three days a week. Today I went to a therapist for folks with cognitive failure. All she suggested was a POTS service dog and asked me if I knew how to request one. I enjoyed reading this.
  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 you started! A shame. And then there are many of us who cannot handle being put under or even local to have the surgery done. The main cause of death and morbidity in doing this ablation is that patients had coronary spasms and heart attacks when they pulled the device's sheath OUT. Way too dangerous for many/most (?) hyper-POTS patients. OTOH, clonidine has saved my life. Wearing the patches instead of using the pills gives you uniform release and control, when it works for hyper-POTS patients.
  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 sick that particular day that the dr. called an ambulance for me!). My adjudicator told me if you can stay alive, out of the hospital and sit up long enough to do a dr visit...WITHOUT THE EXPENSIVE TESTING to SAVE YOUR LIFE (viral, immune, cardiac, neurological, tilts, etc.), then you probably are not sick enough to be declared disabled from POTs/dysautonomia by Uncle Sam. Also if you THINK you can handle a part time job from home, you might want to think again about whether you are disabled because unfortunately, you probably aren't. For instance, it has taken me almost an hour just to type these short bit in a thoughtful manner. If you've been turned down twice, you can get an attorney to look at your case for free (he just gets paid from your proceeds when approved). No way that could hurt and might help. We will keep you in our prayers.
  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. For me, a positive attitude doesn't hurt! Keeping you in my prayers, Elegiamore
  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 out that they do NOT work and are not safe for all POTs patients or ME/CFS patients for that matter.
  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. Without saline I might add. I agree that most likely dehydration/low blood volume could contribute/cause the spikes. And most logically, your increase in activity. Keeping a journal and noting how much water you've drunk, your salt intake, if you've stood up too long that week, etc. to find triggers to bp spikes. Again, I can't imagine your nurse or doctor sending you to the ER with bp of 162/115. They sound clueless about the ER. Your doctor should have SEEN YOU instead. Good luck but no stroke worries! Keep us informed.
  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 figure out it was an infected port (again, infected since put in) and the 5th time he was flushed it started all over again. THEN they admitted it was the port. They pulled it out and he was fine in three days. After another ICU stay. I would go back to the surgeon ASAP. Again, note that they MISSED the port as this guy's cause of infection and pain up front. BellaMia, that is my experience: if you don't get a flush/draw, ask the nurse to pull the needle forward a tiny tad and you will get excellent flushing and blood drawing. They tried to get me to flush it also but it was baloney; just bad hospital infusion nurses. What is port education? I mean, you just keep a bandaid on for 24 hours after entry, keep yourself clean and that's it. The nurses do it all. Would you tell us what you learn, please? Good luck and I hope things improve soon. Sorry you are going through so much.
  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 result in them being being one-sided. i find it difficult to even get the support i need from my spouse, much less." And now, that I see this clearly, I absolutely despise most of my family and friends; immature losers afraid of their own shadow; "church-going" people who have told me they were too busy with Bible Studies to take me to the doctor! I've lost my faith in people now that I see that most of them are self-centered, cry-babies who couldn't walk a mile in OUR shoes with a gun to their heads! MY BEST FRIEND lives out of town and has for the last ten years. She hasn't come home (4 hour drive) to see me in any of my hospital stays, even heart attacks, ICUs, etc. This week she committed to visit me on Saturday before Mother's Day. Then she emailed me that she had made "other plans" so Saturday was out. And that she was penciling me in for Friday afternoon between 4:30 and 5:00 p.m. IF she could get here before traffic and ;not miss dinner at her mom's. No calling to ask if it would inconvenience me. Just ASSUMING THAT I DON'T COUNT as a real person and I can just **** well fit HER SCHEDULE. Even worse, I had asked very nicely for her to come see me, just this once. I have gone to see her even though the trip led to three months of illness and hospitalization. But she won't do it for me. What to do? I've stood this for ages. Yes, I have about five close friends that are NOT afraid and don't get the actions of the others. But finally, this week I too have flipped. I simply cannot stand being a sub-human any longer, to my friends, family and of COURSE to my so-called doctors. After all this time, I HAVE LOST THE WILL TO LIVE. I feel TOO SICK to stand being dumped on any longer. So thanks, dinet friends and pals, for listening up to now. And for the support throughout the years. This post is helpful in that at least I know that maybe, just maybe, it isn't that I became uninteresting or unlikable. It because I have POTS, etc. And because people in today's world are heartless and cruel.
  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 for hotels for many weeks; over a seven year period, I "lived" in Cleveland for about five months while getting treatment. That, with room service, was VERY EXPENSIVE; I'm still paying that down on ccards since 1996. (You cannot be sued for non-payment for medical bills (at least in the state of Georgia) if you make at least a $50 a month payment.) Next I went through my IRA and my husband's IRA last. I ran up over $50,000 of credit card bills until I got approved for SSDI disability and paid them down. For that matter, you could get a tilt table anywhere your insurance pays for it and then send all your medical records to the Syncope Dept. at the Cleveland Clinic; they will give you a paper consultation for $600 cash. My point: THERE HAS TO BE A WAY. You MAY be wasting more money getting useless treatment from regular doctors with your insurance than paying out of pocket for the right care. Good luck.
  23. Cold is the worst for me. I get Raynaud's just if a fan is blowing on me in an 80 degree room. SO embarrassing. My BP immediately goes up. And starting two years ago, the next step is coronary spasms and adrenal rushes. Just from the cold. We had three cold "spells" my SEastern area this year - one after Thanksgiving - had to be hospitalized. One a week or so later - THREE days in the hospital. And then in February - once I got cold when my ride didn't show up to take me to my saline IV and I drove/walked in the cold myself, my bp was 225/130 and I lost my vision. For every degree the temp lowers, there are hundreds and hundreds of extra heart attacks (read in it Reuters) because of vasoconstriction in the cold. And most of us don't exactly have correctly working arterial vasoconstriction in our bods. Yes Vandy stated in a newsletter on this website that there is no reason cold weather should bother any POTS patients. He should have asked me!
  • Create New...