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Faye

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About Faye

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  1. Thanks for your responses. I have a kardia device that does ekg and said normal. But I think I recall my dr said something about being more self aware than most about little skips or doubles. Sometimes when you don't feel to grand these things slip you mind.
  2. I feel like my heart is going to jump out of my throat, as if my HR was high, but I checked my vitals and they are actually really good. I am not having a anxiety or panic attack. Anyone else get this sensation? Or ideas of what it could be? Not had this experience with POTS before, if I feel this way it has always been accompanied by high HR or BP that was really low or high...hmmmmm
  3. Thanks Sylvie, My Dr switched me to Bactrim and it seems to be working which is good. This is for sure something I am going to need to recall this experience.... Our bodies are just a bit complicated and almost a guessing game of what will happen. It would be nice if we all fell into the most common responses, rather than the something you don't expect.
  4. I have a UTI and started cipro 3 days back but it doesn't seem to be getting better, not worse either, left a message with pcp and they are going to change to a sulfur base...just wondered if anyone found one antibiotic works better than another with UTI for patines with autonimia issues....I also just started taking. Cranberry d mannose....just figure can't hurt. I have had UTI before but usually by day 3 I am much better....but this first time while being Ina flare do POTs...any thoughts or things that worked or didn't would be appericTed
  5. Oh wow, this makes so much sense, my family has noted they notice the same thing with me...I thought it was pre menopausal, but now maybe something else to consider.... Hmmmmm
  6. If life wasn't uncertain enough with POTS,sometime yes and sometimes no, or maybe both....found a few formulas tho not a guarantee, may be a little hint of the outcome... But seriously can the Tachy and Gi ever both be UNpresent at the same time...it seems it's most often one or the other, and not quite a break of both, tho I suppose not having the combo in full force is good...but would really like to have a few days where I could have some full relief...asking to be the old norm I suppose is asking a lot, but I genuinely do miss that... In general am better and have found I can return to some funny activities tho not the way I want or use to..no matter what my mind still goes back to the thinking of I still want more and miss my old body... I have many things I realize how blessed I am in what I can accomplish, but it doesn't take away the feelings of missing if what was...suppose the grief process is a constant with a chronic condition.. Trying to realize,accept in the moment, this a chronic condition, and tho it is not seen by others, even our close family and friends it is very much present in all I do... Proud, stubborn, foolish, not wanting to express how challenging this is for me, even if it more my mental state than in body....
  7. Metorpolol so far has help the most with my tacky, not draining me, and helping with brain fog. ( other one listed above I have tried as well didn't do a lot in a positive way)
  8. Large meals, And if not healthy, is a promise of higher HR for me....I started off on 10mg twice a day propanolo, but it didn't really help enough... I told my cardio dr about how just rolling side causes high HR and he said this is normal to occur in POTS ( he said everyone's HR and BP changes for everyone- just we get more pumps) I switched to metorpolol about 6 weeks ago, and slowing been increasing dose, and so far it has helped with the HR not pounding as high in general, not sure if that is an option for you. Hope your tacky comes down, no fun. I notice at work if put a stool under my desk I stared down on the floor it helps take the edge off High HR.
  9. Of the many challenges with POTS....the one that now says if there is no place to sit have to pass..really stinks missing out on a few drinks and fun...I really miss dancing....maybe you can find a club where you can rent a spot for 8 to 10 ppl and ensure you can sit. At least once in a while...I am missing out, but been lucky with every once in a while getting a reserved sitting. Going out means for me, that day I have to spend a good part resting, if I want a drink, it means water chasers... And next day all day bed and pedalyte...but at least every once in a while can go... I can not do my hikes which I use to do every weekend either...so I understand the challenge of fun stuff use to do...but I am lucky to have a few buddies are willing to find ways to include me from time to time.m I hope you can find ppl that you are friends with or can befriend. Sometimes family and friends think I look fine and can't always understand why I have a long list of cants or am way too tired or not feeling well...
  10. Wow thank you so much for sharing!
  11. Interesting perspective and good points to do small things and do what you feel like you can do and not forcing yourself into a routine but listen to your body to help keep active.
  12. Basking in your joy! Many congrats!!
  13. I am not in your situation in terms of work...but wanted to reach out...found that many ppl do not understand what we face with POTS/dysautonomia, even if you try to explain...some will say you want to get better so take the meds but do not understand how sometimes our bodies just don't tolerate them, it is something you necessarily can just suck it up and get over or thru most of the time. It's more of just getting thru another set of rough minutes, hours, days... There are not a lot of answers out there and even having a shared condition/illness we all still respond differently and are at various degrees. Sometimes all we can do is baby step thru life, and see where it lands. I am not sure where you are located or if you have been able to get state support for not being able to work. In the states they have a program where you are on perm state disability, and then feel like you may want to return, they give you a program that allows you to try and have up to I think 5 years if you need to go back to full state disability you can without going thru the whole nasty process to qualify...just a thought ....
  14. I do understand why the medical industry has values to describe our elements, but I also understand that the values are not indicate of what is happening in our bodies. My temp is in the same low range and at 98.6 I feel the aches as tho pre low grade temp was 100. I had a server Gi infection, that was eating thru my Gi tract, went to the ER due to the pain and 'feeling' feverish. My temp never spiked above 99. My white blood count was 22. Although our body tempature should tell us if a virus or bacteria it should be fighting causing the spike, it doesn't alway work that way. I value the medical world, however if one thing I have learned is that they don't know it all and are always learning things they never knew or thought to be true. Just like my POTS, even tho it has a name many Dr today just point to it being a mental disorder. Who know what they will say later...I think having numeric values obviously have a great value but it doesn't mean because mine don't match that I don't feel it. I think we can all agree to that
  15. I was on the propanolo 10mg am and pm and it did the same thing with me...bp and HR all over the place...was taken off to do TTT...and still had high HR but BP went back to being closer to the old low pressures....just been on metoprolol and was doing well, but since last week my HR is has been bouncing and bp at times is running like your which is high for me...and then dips down to 80/70. I can't make any sense out of any of it. I am seeing my cardiologist tomorrow hope to get some answers...also my GI issues are flaring more than normal with spasm...I have noticed when BP high pulse has been low like 65 which is low for me but then jumps back up...no idea ....if this is just a part of pots... I posted about it a few days back and got responses that others have HR that all over the place at times as well...best of luck to you.
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