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Pistol

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Everything posted by Pistol

  1. @MaineDoug a good friend of mine had a hip replacement in November. 6 weeks later she is back to completely normal except she is sooo much better! She feels like a young woman again! Its amazing how much more energy she has without all that pain, I am sure it will go the same for you. Just do what the PT tells you ( not more, not less ) and hopefully you can take your wife dancing soon!
  2. 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
  3. @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.
  4. @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!
  5. @Brian no, unfortunately I dont know. Medication changes possibly. Staying active and hydrating definitely, but activity only as tolerated.
  6. @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.
  7. @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?
  8. 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!
  9. @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!
  10. @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.
  11. @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.
  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!
  14. @Sea otter Sadly many of us here have been in your shoes. IMO some docs dont "believe" in POTS - or other dysautonomias - because it challenges all science they were taught. My first diagnosis was NCS - and even after passing out during my firstt TTT the cardiologists were very dismissive. " Its called the common faint" is what I was told. Drink more. Despite me having tons of witnessed ( at work in a hospital ) syncopal episodes and even seizures I was sometimes told that I am "making it up to get attention". Even after some of these were caught on halter monitors and my HR and BP were taken right away, often both sky-high. When they caught an event on EEG and telemetry while hospitalized in an Epilepsy monitoring Unit and it showed seizure from decreased cerebral perfusion due to vaso-constriction still some docs said that they do not believe in POTS. I was eventually diagnosed by an autonomic Specialist who even did blood work to check Norepinephrine levels and proved the diagnosis of HPOTS. Still - there are sceptics. So what I learned is - fire the ones that do not know what they are talking about, and the ones that don't know how to help - and keep the ones that understand your symptoms and are willing to take on the frustrating ordeal of finding the right treatment. Just because it is called an invisible illness does not mean it is not real.
  15. @KristieL Welcome to this forum! I am reading your post and am wondering about you mentioning low BP and high HR - in order to meet POTS criteria there has to be a sustained increase in HR WITHOUT a drop in BP. Here is an excerpt from this article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8920526/#:~:text=To diagnose excessive orthostatic tachycardia,the readings taken when standing. To diagnose excessive orthostatic tachycardia (required for POTS), patients should have a sustained heart rate increase of at least 30 beats/min (for adults) or at least 40 beats/min (for patients aged 12–19 yr) on at least 2 of the readings taken when standing. The systolic blood pressure should not fall by more than 20 mm Hg. If your BP falls more than 20 mmHg upon standing you may be affected by orthostatic hypotension instead of POTS. Have you had a TTT?
  16. Research, venting and good self care!
  17. @Sarah Tee No, I started on 200 mg and did very well with it. I never had any issues with it at all. I did suffer from joint pains ( but Plaquenil was not prescribed for these, it was ordered for POTS ) and I noticed improvement of those after about three months. Which is supposedly the time it takes for it to take effect anyway. I think we need to build up a therapeutic level of it before it starts working. Strangely - I stopped the Plaquenil a year ago and the joint pains never returned!
  18. @MaineDoug That is medical negligence, for sure! Even if the finding was incidental ( since they did not really test for it ) - any abnormal result or new diagnosis MUST be addressed in the discharge instructions, whether it is a follow-up with your PCP, a referral to a specialist or further testing. The doctor also HAS to make you aware of the result. I am furious that you were so badly treated, and that your health suffered from it. Gladly the new med may give you some improvement.
  19. @Sarah Tee Reduced cerebral circulation can be caused by several reasons: it can be that the blood flow to the brain slows due to vaso-constriction, too low BP from vaso-dilation or low blood volume. IV fluids usually help in all of these scenarios, albeit sometimes only temporarily. For me HPOTS causes the blood vessels to constrict and more pressure is needed to pump the blood to the brain. IV fluids help in that by creating an even pressure within the vessels and this reduces the ANS to produce Norepinephrine to constrict. For example: if I go into a crisis with high HR, high BP and tremors it is caused from adrenaline. IV fluids counteract by creating an even pressure which in turn reduces the sympathetic over-compensation and things calm down. If the blood vessels are too dilated ( often in EDS ) then the ANS tries to counteract by increasing HR to pump more blood to the vital organs, and may dump adrenaline to constrict the vessels. IV fluids will help by creating an increase in the pressure within the vessels. And if there is low blood volume of course the ANS will need to increase constriction of the vessels and increase HR and pressure to pump enough to the organs. IV fluids here can help simply by increasing the volume within the vessels.
  20. @Caterpilly I have heard that sooo many times! I even had an EP once tell me ( after he did my second TTT ) he thinks POTS is a fashion diagnosis and because it is so new and the symptoms so vague everyone wants to have it now. Another Doc told me he does not believe in IV fluids for POTS because POTS is a psychological condition. I think that some doctors simply dont want to admit that with dysautonomia they have to rethink everything they learned in med school!
  21. @MaineDoug I am glad everyone was watching out for you, and I hope the new med will finally bring you some improvement!
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