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Pistol

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Everything posted by Pistol

  1. @MikeO two thumbs up! Enjoy! I sometimes make a burger by using veggie burgers a "buns" and put cheese, lettuce, tomato and onions in the middle.
  2. Hello @Krys, wow, you really have been through the wringer! I remember how relieved I was when I got my official diagnosis - it was almost like FINALLY its real! You mention your cardiologist ( btw I am so glad you have a doc you can trust! ) has you on metoprolol as needed, but you also mention your tachycardia is very bad. I am not questioning his orders but want to point out that generally in dysautonomia beta blockers are more effective when taken regularly, on a daily or twice daily basis. POTS is an imbalance of the ANS, so taking medications the same time every day can help the body regulate. Having said that - many people take an additional dose as needed when symptoms flare.
  3. @VerdantPikmin my family has a history of HPOTS in three generations, and many of them have tinnitus as well as intermittent hearing loss when the BP drops and the HR increases. We were told by autonomic specialists as well as ENTs that this is most likely due to a loss of cerebral circulation.
  4. @rondo I was on midodrine for NCS at the beginning of my dysautonomia journey, and I can tell you that the effects last only for a few hours because of its short half life. Personally it was not the right med for me simply because of the type of dysautonomia I have, but I would like to encourage you to talk to your doctor about the good and bad effects when you take it, so they can advise you on any dosage or schedule changes that might be helpful. If it improves your symptoms that is wonderful news!
  5. @MikeO referrals take time, unfortunately. I would call the nurse that takes care of referrals at your PCP's office and check if she is already working on it. In this process it is all about communication, so I hope your cardiologist that mentioned the referral has also let your PCP know!
  6. @mehaller I am so sorry you have to endure all of this! Hang in there! -- As to your question about pain and dysautonomia symptoms - I have learned that anything that stresses our bodies can trigger symptoms - and pain is a big stressor. The ANS responds to everything that is going on, inside and outside of our bodies.
  7. @MikeO I use claritin in the morning when allergies show up. I too have worse dysautonomia symptoms with allergies, I think that is because histamine is a vasodilator.
  8. @Neomorph I have not noticed any interactions with caffeine. A lot of people on this forum do not tolerate caffeine, so if it causes you issues decaf may be worth a try.
  9. From all of the beta blockers I tried Carvelidol is the one I tolerate the most. Other beta blockers caused slow HR or other unwanted side effects, such as sleepiness, or they did not affect me at all. Of course we are all different, and we respond differently to medications. You mention that you take a beta blocker as needed - I have found that this is not the best solution for POTS patients. Dysautonomia is an IMBALANCE of the ANS, so in my experience taking medications on a regular schedule is more effective, as well as following a daily rest-and-activity routine.
  10. @Neomorph Unfortunately this was one of the biggest steps I had to take to improve my quality of life - after - POTS - diagnosis.I am glad you realized that taking this drastic step was necessary - I pushed through work for years and therefore made things a lot worse. When looking for a new job I would like to suggest that even a desk job can be stressful, and it may be a good idea to consider being able to get up and move frequently - sitting for long periods of time triggers symptoms for me just like standing or walking does. What med do you take right now? Most doctors start out by prescribing beta blockers. Each person is different and we all respond differently to meds but I have tried several beta blockers and found the greatest relief of PVC's and tachycardia from Carvelidol, which has both beta-and-alpha blocking properties.
  11. OMG @MikeO - WATCH OUT! That is way too high. I am worried about you!
  12. @PCT_SAV It depends. I was wheelchairbound at some time, but that was when I was not medically controlled, and I kept passing out and having autonomic seizures. If you have syncope when upright AND you have been refractory to all other measures ( salt and water intake, compression hose, targeted exercise, medications, IV fluids ) then you may have to look at a wheel chair or walker as an option. However - if you have just recently been diagnosed you probably have a lot more medications and treatments to check out before you go to such drastic measures. Remember - exercise is absolutely beneficial for us, we just have to do it within our limits. Also - you may want to increase your upright walking time gradually, instead of stopping it all togehter.
  13. IMO good news. Means they realize they are at the end of their abilities. I would go for it.
  14. 🙏 Wish you the very best and applaud you for trying!!!!!!! If you check under the physicians tab you can get physician brochures- it may be helpful to give one to every doctor you go to.
  15. @Pattie I actually think that compression underwear could be superior to abdominal binders because they also cover the pelvic area as well as the buttock muscles. If you think of gravity - this area would serve as a "cup" to hold all the volume. So if we compress the entire lower trunk it should also prevent more of the pooling.
  16. @Sarah Tee I "suffer" from all of the above also, but in my case I am able to maintain a healthy weight because I do not eat three meals a day but rather eat six small meals/snacks. I cook extra on good days and freeze in small portions. I also avoid carbs with meals and eat protein and veggies for meals. I do the carbs as my snacks - especially pretzels and crackers. Nuts, cheese, whole grains, fruit etc are good snacks for me also. AND - a big one - I avoid sugar. Also - I buy healthy low fat frozen meals for days I cannot get off the couch, that is an easy go-to. I hope this will help you achieve your goal - keep at it! You may find that your upcoming surgery may help you also. Maybe you could ask to consult with a nutritionist while in hospital?
  17. @Sarah Tee I am really not sure how they have been tracking cases of POTS. But I know that now - here in the US - POTS has a ICD code, that means that anytime someone gets that code as their diagnosis they can "count" that person. But then there are always the many people that dont have a diagnosis, or don't even know they have POTS! There are so many people that have mild to moderate symptoms and just cope. Therefore I DO believe POTS ( and other dysautonomias ) are much more prevalent then we think.
  18. i would like to mention that according to the NIH there are 500,000 to 1,000,000 people diagnosed with POTS in the US. that is 0.2 % of the population. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7046364/#:~:text=The prevalence of POTS is,United States have the disorder.
  19. @MikeO Well, I guess I should just stop all my meds and find out ... if you dont hear from me in a while you will know why ...
  20. Well, I achieved SOMETHING - yesterday I had a "bad" day, with pounding heart, tachycardia etc. Went about my business. This morning I realized that I had forgotten my am meds ... well, I did WAAYY better than I thought I would have ! I have not went a day without meds in many years!
  21. @Derek1987 Was this physician aware of your history? The faintings, the fatigue. the exercise intolerance? Does she expect you to stop all of your other meds and add those new ones, or does she want you to stop your other meds? I am not in a position to question any physician - but IMO this is a bit bold of a statement, even for a specialist.
  22. Have you looked into NCS - neurocardiogenic syncope? It is a dysautonomic dysfunction. If you check under the information tab on the top of our homepage you can find some info on this.
  23. Dear @kmichaelson here is an article and a excerpt from it explaining that there are very typical changes in a EKG related to hyperkalemia ( high potassium ). https://emedicine.medscape.com/article/240903-workup#:~:text=ECG changes have a sequential,%3B and ST-segment depression. ECG changes have a sequential progression, which roughly correlate with the potassium level. Early changes of hyperkalemia include tall, peaked T waves with a narrow base, best seen in precordial leads ; shortened QT interval; and ST-segment depression. With the fact that you had a syncopal event, EKG changes and low BP it would have been realistic to take you to the ER for evaluation, blood work and yes - IV fluids.
  24. @Sea otter from what explained to me is that POTS is actually quite common, but you have to understand that there are different types of it. Often it can show up in teenagers or young students in college and eventually they get it under control, or it even goes away for years. Then there is POTS triggered by certain events, like pregnacy, illness or surgery. POTS that is triggered by EDS obviously would be relatively common, since EDS is also common. HPOTS is a rare type of POTS because - in addition to typical POTS symptoms - it has additional characteristics, such as elevated BP and cold hands and feet, tremors etc from excessive vasoconstriction, as well as elevated norepinephrine levels. As per literature only 20 % of patietns have this type of POTS. And - in my case - HPOTS seems to be genetic, since three generations of women in my family have it. There is also POTS caused by SFN, where the autonomic nerve fibers do not work properly or are even missing. That is rare. And then there are all the people that have all of the POTS symptoms but lack the tell-all symptoms pf tachycardia. They suffer everything POTS patients experience except the tell-all symptoms of tachycardia. So they usually just get a vague diagnosis, such as autonomic dysfunction. No doubt this is just the tip of the iceberg, and there are more categories for POTS-type dysautonomia. I will have some digging and find out about all the sub-types!
  25. THAT is NOT a small achievement! 👌
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