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Pistol

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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. I am thinking of you and wish you an successful surgery, a speedy recovery and uneventful hospital stay! in a few weeks you will be a new man! Best of luck, @MaineDoug
  2. @MikeO As a result of HPOTS I ended up with Barrett's and duodenitis years ago. It was successfully treated with Carafate, Protonix and - most helpful - a medicine compounded by pharmacy called GI cocktail It contains mylanta, Viscous lidocaine and Phenobarbital. This mix healed my GI tract up in just a few weeks and the GERD has been controlled with just Pantoprazole and diet changes.
  3. @Sea otter My autonomic specialist tried many meds on me although he was very aware of my medication hypersensitivity. Some worked for a while then stopped, others were not effective, some had side effects in the beginning and then I tolerated them better after a while, and then a few I had to stop cold turkey because I had terrible side effects from them, Clonidine and Wellbutrin being some examples. All of these were started at a dose much less than the lowest dose available then slowly increased in small increments. Every time I had to start a new medication it was like going down into a dark cave - I was afraid of what might happen. But in the end through all this trial and error we found the combination of meds that is perfect for me. Be brave - without trying we cannot tell if it works, and every new med could be the ONE!
  4. @Brian no, unfortunately I dont know. Medication changes possibly. Staying active and hydrating definitely, but activity only as tolerated.
  5. @Marabi I have had many procedures that required NPO and anesthesia. I used to have problems with anesthesia including high and low BPs and even seizures. They now run fluids before and during them and I no longer have problems. A knowledgeable anesthesiologist would be aware of the special considerations for POTS patients, so it is important you tell them beforehand.
  6. @Brian Welcome to the forum! It is common for POTS symptoms to be affected by seasons. Do you live in a climate that has changing seasons? Colder temperatures can trigger the ANS to constrict the blood vessels, and that can worsen symptoms. Hot summer weather can DILATE blood vessels, which of course also affects POTS symptoms. Barometric pressure changes can trigger symptoms. There are many posts addressing POTS and seasonal changes, you may want to use our search feature to do some more digging?
  7. Hello @Pineapple I am sorry that you are that ill! I have HPOTS and know the feeling of running a fever but temperature is normal. When I had COVID and other viruses or colds I was able to make secretions and cough, so I am not sure if it would be a typical symptom if you cannot make mucus. But if you cannot sweat it would make sense to me that dysautonomia could affect you like that. Sorry I cannot be of more help. Of course hydration is important. You mention you have been in bed for a month - please remember that it is very important to do leg and abs exercises while lying down, and to sit up or stand up even briefly often. One of the things that make dysautonomia worse is prolonged bedrest! Wishing you improvement and recovery soon!
  8. @MaineDoug @MikeO Last month I had a colonoscopy and EGD the next day. NPO for both procedures. Since I have a port I could run fluids while doing the prep the day before the colonoscopy. I had problems with preps and npo before but they know this now. They ran fluids before each procedure. I did super well, no problems this time. Mike, I did a lot of broth and jello for the clear liquid diet part. But the jug of stuff you need to take will fill you up!
  9. @Jyoti I only lie down for sleep, otherwise I can sit all day. I can walk for about 15 minutes but then I have to sit a spell. If I walk too far I wont be able to get back. What I cannot tolerate at all is standing. A PT did three counts once - I had to stand at a counter until I had to sit down. Each times it was a bit over 2 minutes. I become symptomatic before that - heaviness in the legs, nausea, shortness of breath, dizziness and tachycardia with palpitations. As long as I sit immediately it takes about ten minutes and it usually subsides. If I dont sit down I will pass out. I can be active doing something most of the day, but I have to do things in spurts. I can do dishes but then rest, or I can shower but then rest. And I have the most stability in the mornings, that is when I schedule all appointments or do my chores. The rest of the day I sit around doing relaxing things. Exercise is pretty much impossible for me. I can do a bit on the rowing machine but nothing upright.
  10. @Machair Yup, this happens to me. I believe your theory about blood rushing to the gut is correct, this would be the parasympathetic branch kicking in doing its job. And with dysautonomia ( especially HPOTS ) there can be an abnormal overcompensation of the sympathetic ANS, causing the Rush-feeling from an norepinephrine dump. I also experience the stress from standing while prepping and cooking meals. I have to do it in stages or I dont have the energy to eat after cooking.
  11. AAWWWW! 🥰 Thank You!
  12. After a few years of stability today I was hit with a flare because I missed one of my weekly infusions. Everything was fine until .. well, until I hit a brick wall. Palpitations, shortness-of-breath, no energy, can't get off the couch and can't even read or watch TV. I had to cancel a dinner. The friend asked "Well, what is wrong?" I answered "It is my chronic illness". You can imagine the response. So I am trying to put it simple but just could not. Is it the brain? Then I am crazy. Is is the heart? Then I should see a better cardiologist. Is it a BP problem? Then I need to eat less salt. Is it my nerves? Then I should see a therapist. UUUGGGH! Even after soooo many years of dealing with this, and having conquered a lot, I am still hitting a wall when I have to tell people why I cannot function when in a flare.
  13. @Tdg4 welcome to the forum! You have an interesting question about PTSD, Trauma and dysautonomia. I have HPOTS ( thought to be genetic since it affects women in three generations in my family ) as well as PTSD and ADHD. I have underwent extensive neuro-psychologic testing, am currently and have been in counseling for the PTSD. I also was positively diagnosed for POTS with lab tests and TTT. The neuro-psychologist states that my symptoms are NOT related to anxiety or trauma. I went through a rough time emotionally a year and a half ago but it has not affected my POTS, or worsened the symptoms in any way, neither has the therapy. However - therapy for PTSD can be very scary and stressful since the goal is to have you come to terms with the trauma and learn healthy ways to deal with it. This will trigger the trauma recall and the pure stress of this can potentially trigger an abnormal autonomic response, as ANY stress can. What is always best when going through a flare is ample rest, mild exercise and lots of fluids, as well as good self care and diet. To most breathing exercises can be helpful, your therapist may be able to teach you some. Be gentle with yourself, and talk to your therapist about your symptoms as well as your doctor. Let us know how you are getting along - be well!
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