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About Elegiamore

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  1. 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.
  2. 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.
  3. I got POTS when I was 20. I turned 60 this year and I have gotten progressively worse. All cases are different.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. Has anyone NOT been told they are nuts? Every POTS patient I know has been told this.
  9. "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.
  10. 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!
  11. 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.
  12. 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
  13. 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.
  14. 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!
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