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KiminOrlando

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  1. Does she actually lose consciousness? If she keeps standing will she hit the floor? If so, this could also introduce Neurocardiogenic Syncope. If not, that is relevant. Just for reference, I'm on 50 MG of Metoprolol ER 1x a day. They don't want to give me too much because it can cause OH. My cardiologist says prescribing that drug to POTS patients is an art, not a science. You want to control the heart rate, but not so much that it drops the BP. Not enough of that drug causes the heart to pump too fast so it doesn't have time to fill with blood, therefore pumping partially empty. Did a cardiologist write your script or is a general practitioner trying to figure this out? I think the fludrocortisone is really going to help. Maybe then the beta blocker will be more help.
  2. Yes. I have Gastroparesis. I get gastric dumping as well. When I have very bad episodes, it is like whatever I have ingested is quickly looking for the nearest exit. I end up vomiting until there is nothing but green liquid left. On the flip side, there is nothing but water. My BP drops because it dehydrated me. An episode of gastric dumping can trigger a downward spiral for me. On 'normal' days, I can hear all kinds of noises coming from my stomach. The pain can range from discomfort to the unimaginable. When the gastric dumping starts, it comes in waves and it almost feels like labor. I have been lucky enough to find a Gastroenterologist who trained in the UK, and he wrote me a script for Domperidone. It changed my life. This med isn't routinely used in the US. It isn't approved here, but it used to be OTC in the UK. You now need a script, but it is used. My other solution was to decrease the amount of food I put through my system. My stomach feels better empty, so I leave it that way as much as possible. There is an adjustment at first, but after that, it has been great. I only eat once a day now. Since I'm inactive from being sick, I don't need the calories of a normal active adult. I supplement with vitamins.
  3. Well then, you will either stop coughing or pass out. I think Grandma was on to something 🤔 😂
  4. @Looking_for_light This thread discusses hydration solutions. I remembered reading recipes a while back so I went searching. Hope it helps.
  5. @Looking_for_light More recipes and info for you to sort through.
  6. @Looking_for_light I found this thread with some homemade hydration recipes.
  7. My doctor did not give me anything because of this. He said I would have to stop some of my meds. I'm on immunosuppressive drugs, so we just stopped that. Sorry to hear that you are sick. It took me about 3 weeks to get back to 'normal'. My lungs never got too bad. Mine was mostly upper respiratory although I vomited the first 24 hours. I lost taste for about a week and smell is still not right. My fever went up to 102.4 which caused me to faint without my usual warnings. I drank alot of Liquid IV and chicken broth from bullion cubes (double cubes). Lots of liquids. Nothing made me stop coughing. I got desperate enough to try grandma's approach-- whiskey mixed with peppermint, but I had no peppermint, so I just did a sip of Fireball until I stopped coughing. I don't know what alcohol would do to you, so I'm not recommending it. I was just desperate. My whole body was sore from coughing. The headache went away after 3 days. Hang in there.
  8. I just remembered, Midodrine caused headaches in me. Any chance the headaches coincide with midodrine usage?
  9. Fludrocortisone was difficult for me to obtain initially as well. I am hypovolemic. When I got it and started salt pills, it changed my life in 24 hours. It tanked my potassium though.
  10. Was just coming here to discuss a Mast Cell disorder. Evidently it is a spectrum. Tryptase can be negative and you can still have mast cell issues to a degree. May also want to consider making an appointment with Vanderbilt Cardiology to see if they will refer you to their Autonomic Clinic and maybe their Mast Cell specialist. My Mast Cell doctor has me taking 2 OTC Xyzal, Quercetin, and 2 Pepcid AC per day. Also was told that meds can trigger 'leaky' Mast Cells. BETA blockers were one of those meds. This case is very complex. In my opinion you need to be at Mayo Rochester, Stanford, Vandy, Cleveland Clinic- some place like that. I believe my headaches are Mast Cell related as well. They get better with Mast Cell drugs and don't really get better with some migraine drugs. Keep advocating for her. She needs you.
  11. So, I have been chasing migraine relief for some time. Personally, I believe my migraines stem from my Mast Cell issues (lots of anecdotal reasons), but no medical doctors believe that, so we are trying everything else. I used Ubrelvy and it worked somewhat (maybe, I was also on good Mast Cell meds), but I was taking lots of it, so we moved to prevention with Nurtec. That did not work at all. Now my neurologist has switched to giving me a monthly shot. The new med is called Ajovy. Has anyone tried this? I got the shot a week ago. 5 days later I am fainting faster than normal. Something has changed significantly. The only change is this AJOVY drug. I looked it up and it doesn't have fainting as a side effect, but POTSIEs are different. I looked up how it works and found an article that it is a vasodilator. I'm thinking this new migraine med is the cause. Any experience with this? https://pubmed.ncbi.nlm.nih.gov/24960305/
  12. I was diagnosed with COVID last week. If I was normal, I would be coming out of it now, BUT, well, you all know. My BP is making 20 point swings in 3 minutes while I am seated. I have no idea what is going on. I go from 124/97 to 103/80. Standing up just drops like a rock. I'm drinking multiple Liquid IVs, cubes of beef bullion, and water daily. Taking salt pills. Sunday I went to the kitchen to get water and fainted. Unfortunately I somehow managed to break my left index finger in the fall. No idea how it happened because I was unconscious. When I woke up, my finger just hurt really bad. So did my hip, but thankfully, it wasn't broken. How long is it going to take to get back to my normal situation? I would consider going up on my FLUDROCORTISONE by half a pill but that bottom number is getting higher than I want. I don't currently have a Dysautonomia/POTS doctor because mine retired. I'm still waiting on a response from Vanderbilt. My primary is not comfortable advising me. How did your BP behave in the aftermath of COVID? How long? Did your doctors have you do anything different? Is there any research I can use to take to my current, timid cardio and challenge him to get involved in Dysautonomia? Any advice would be welcome. Thanks.
  13. Not sure if this topic is allowed here, so remove it if it isn't. I was on social media and saw a link which took me to a form that automatically sent an email to my US Senators and Representative stating that I am their constituent, I have POTS, and I am asking that they include specific wording in a specific bill to allocate a specific dollar amount earmarked for POTS research. There was also a link to send to friends and family to send to their Representatives. Is this something that this group has reviewed? Is it something we should cross promote? It was from Dysautonomia International. I'm not going to post the link because I'm pretty sure that isn't allowed. ***UPDATE*** Evidently they just added an ICD10 diagnostic code for POTS effective 10/1/22. It is supposed to be G90.A. If this is true, having an actual diagnosis code will change things considerably. Also, my email generated an auto-response from my 2 Senators, so they got it.
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