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About Pistol

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    gardening, my family, reading

    " And I think to myself - what a wonderful world!"
    Louis Armstrong

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  1. @MTRJ75 no breakthrough infections, we never got the shots. Doing OK, taking things slow.
  2. @MikeO - yes, a central line stays in only for about 6 weeks, and is more geared towards temporary IV medications. A PICC line is like a central line that gets threaded into the heart via the elbow, and can be used for several months. A port is an implanted device that can stay in for 5 years and can be used daily, weekly or monthly. Many people here that get IV fluids for their POTS simply go to an infusion center, ambulatory care center, urgent care center etc and with a prescription can get an infusion with a regular needlestick in the arm that then gets removed when they are ready to leave. I have a port, since I am in need of IV fluids several times a week in order to stay upright and conscious. But i used to get them as an outpatient, just needed them so often that it was no longer realistic to go somewhere several times a week. There are risks with infusions, the access being the main one. PICClines and central lines of course have a high risk of infection, so do ports, as well as blood clots. Many specialists do not like to use IV fluids unless as emergency treatment for a flare. i used to have to be admitted every 6 weeks for 24 hour fluids with severe POTS flare. I realize I am answering much more here than you asked, so I apologize. Just thought it might be helpful!
  3. Hello @Hippopotsamus - yes, I fainted frequently as a teenager ( diagnosed back then with teenage angst!!!! ) and also developed tachycardia and palpitations as well as sweating and hypoglycemia, even into my 20's. I became ill with full-blown HPOTS and NCS at 42, I believe it was triggered by childbirth 5 years before that. Since the birth anyway I was wired, hyper, nervous, nonstoppable. Extremely high adrenaline, all the time, never slept. Ended up passing out and having autonomic seizures, which lead to my HPOTS diagnosis conformed by neurotransmitters and TTT. Autonomic neuropathy as well as HPOTS runs in 3 generations of females in my family, so we are definitely genetically predisposed. Some of us have EDS, one sister also has SFN.
  4. @Scout - from what i have read on this forum most people did relatively well with the shot. Some flared a bit, but most seemed to have overcome the side effects after a few days. Even here where I live most people did well with the shot. I know of two people who were made to get the shot right after getting COVID naturally and they got a bit worse symptoms from it.
  5. @Scout - has your doc ever considered a calcium channel blocker? Or guanfacine ( Tenex? ). These meds have been helpful in controlling my labile BP's.
  6. @Bergbrow - I have HPOTS and get these tremor/chills attacks when my adrenaline goes up. I will be shaking uncontrollably, yawning excessiveley ( an attempt by the ANS to provide more o2 to the brain ), hands and feet and lips blue. If I dont lie down I go down, and even take seizures from absent brain circulation. The one thing that has stopped these for the most part are calcium channel blocker ( to provide adequate vasodilation ), avoiding triggers and IV fluids. I get them 3 times a week vie port at home and have not had too many episodes since. Actually NO seizures or syncope this year!
  7. @targs66 - ironically my husband now seems to have some mild POTS symptoms! He seems to get very tachycardic ( 130's ) when he does anything. He had this problem bofore and took Verapamil but stopped it during COVID. I have him drink a lot and eat salt, hopefully he will improve. Thank god no fatigue! Thanks so much for the well wishes!!!!!!
  8. So sorry @dancer65! I know how miserable these things can be! Take it easy, try to rest and follow the diet. Hopefully the Turmeric helps! Keeping you in my thoughts, well wishes from across the pond - Pistol
  9. Hi! Just wanted to share my COVID story. 3 weeks ago my family and I came down with COVID. My husband was bad and had to get the Antibody infusion right away, he got better fast after that. My symptoms lingered: high fevers every day, fatigue, cough, shortness of breath ... went to ER 3 times, once for antibody infusion, always was sent home. Until finally on day 14 I could no longer breathe, fever 103.8. PO2 in ER was only 83. They admitted me for 4 days on O2, steroids and many other meds. Finally got to come home Saturday on home O2 and am slowly improving, although it will take weeks to get back to normal. What I wanted to point out is that despite the severity of the illness my POTS symptoms have been under control! Yes, BP is up a bit from the steroid, but no syncope, seizures or even BP surges! That is something unheard of for me, since I normally become severely unstable from even the slightest sniffles. I am hopeful to owe this good fortune to the Plaquenil my specialist put me on in December 2020. It really seems to have helped the inflammatory condition that was a definite underlying trigger for the dysautonomia symptoms. I hope this info will be helpful to someone. Be well, everyone!
  10. @POTSie78 - oh, I sympathize! I went from multi-tasking mother/wife/nurse at 42 to complete cripple! Couldnt stand without fainting or having seizures at work or anywhere, always in ER or hospital, seeing specialists all over the states, eventually becoming fully disabled and home bound ... it was a tour-de-force of fighting my life, my body, my faith. But eventually I gained acceptance, which is the very most important step for us to come to terms with our new reality. Today I live a good life again - yes, with extreme limitations but what matters on life is still here, everyday. And I have a newfound appreciation for my bodies ability to adapt and to "outsmart" the dysfunction! Wishing you peace of mind and the realization that many of us have found ways to live good lives despite our illnesses. Hugs!
  11. @CallieAndToby22 Hi - your post reminds me of something that ended up being essential in helping to improve my dysautonomia. When I first became severely ill with HPOTS I also developed generalized joint pains and IC as well as severe GI inflammation and acne at the same time. Over the years we were able to improve one by one. Today I have mild GERD, IC and clear skin. I saw a rheumatologist twice who ruled out AI disease and started me on steroids, which shot up my BP and landed me in the hospital ( 2 years ago ). Thankfully my wonderful autonomic specialist does research on the current leading findings of POTS being an inflammatory condition: meaning that chronic inflammation - may ot be neurological or otherwise caused - can and will cause dysautonomia in predisposed individuals. Back in December 2020 he started me on Plaquenil and I have sooo much improved! No more acne, all jointpains are completely gone ( I even had a constantly swollen knee and triggerfinger, all gone ), my IC is very bareable and my stomach is very well controlled. In addition my HR and BP are mostly in the normal range ( that is with IV fluids 3 times a week at home. I also used to take turmeric supplement for the inflammation with great results, since I cannot take NSAIDS. It is a powerful and effective little herb, and even used and known in the modern medicine world. Low histamine diet may be helpful too. Good luck!
  12. @MTRJ75 - the needlestick episode you described does sound exactly like a vaso-vagal event. I have - in addition to POTS - vasovagal syncope, or neuro-cardiogenic syncooe. Thei gets triggered by a certain event and causes sudden and severe vasodilation, leading to drops in BP, increase in HR, sweating, weakness, excitement, paleness and eventually syncope. Public speaking for example is a common trigger to many people, so are blood draws or shots. The best non-medication strategy to prevent these episodes known to me are ample fluid and salt intake and compression garments. I know of a lawyer that used to pass out in court all of the time and now wears very tight pantyhose, never passed out again. I also really would recommend to have someone take you to any lab draws from now on!
  13. I get them during times of high adrenaline from triggers, and what has seemed to help me best is a low dose Ativan ( 0.5 mg ) right before bed time.
  14. Hi @docpots - I have HPOTS and NCS and in the first few years, when my symptoms were hardly controlled, I would have many hypoglycemia episodes. It would start feeling hungry and weak and had to lie down, then I would start to sweat profusely. If I did not eat I would become unconscious. I have been disabled for 8 years and am well controlled on meds, IV fluids at home and I am homebound, since I need to be able to lie down when things get too much for me ( and that almost anything on a bad day ). Since I am better controlled I no longer experience these hypoglycemia episodes. I definitely found them more frequent when I was in a flare. I too eat every 2 hours and avoid concentrated sweets, since they cause these attacks for me. I am not sure if this is helpful since I am not diabetic.
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