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Faye

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Everything posted by Faye

  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.
  16. Thank you both, when I went to urgent care they told me to go to ER last time....and neither the urgent care or ER dr heard of POTS and didn't even bother to figure out what is was.....I do have a appt to see my cardio tomorrow maybe he can offer something to do next time but I am guessing there will be at some point...this is the 2nd espisode....and some how it just seems to go away...but my question is why is it happening....at least I have it all on video showing the espisode this time...not sure it will help, but something to show or explains... I filed two formal complaints....I don't know that anything will come out of it but hopefully at the least it will be addressed...I am glad I don't have a life threatening issue....but it sure is not fun as you know....today my HR has been low all day...which is good in case it decides to spike but i literally feel it...I am it sure how to explain it...it's almost like my brain can guess my pulse based on how clear I can think, the level of tightness in chest or lack of, and level,of dizziness....makes me sound weird I suppose.... But let's see what dr days tomorrow and go from there and will post a note next to my bed side don't go to ER unless knocked out....
  17. So MAD, finally broke down and went to ER for bouncing HR and high....just felt awful....they took me right away got vitals and eckg...seen the bouncing but was more questioning HR resting at 110 I tried to explain I had pots because they wanted me to stand for chest x Ray ....I know I am not having a HR...anyway...of coarse they have no clue ....asking me if I had coffee or what I was doing... Ummm no and laying down like I am here.... Then they leave me sitting for 2 hours nothing ask they say we don't have your results and no beds....ok ...the told to go back and wait in lobby.....ok....I decide after 3 hours if they don't have my results and at this point my HR finally settled then I a, going home... Once I say going home they chase me to come back cuz now they have a bed? And want to start an IV....why? Just told me you have no results...I might be dehydrated ...that I can tell you NOWAY after 90 oz nope try again....then I say well can you give me results you have they don't have any them why start an IV... I understand ER is a place to wait ....but the lack of communication and the I am going to leave and owned help....money hungry is how it feels to me...hopefully I will not make this mistake again...I been tempted so many times....this should stick with my be used it will be all out of pocket.....deductible has not been met....then then girl in front was so rude.......my 18 yr old was wow does she not know she is at work and not talking to her mom with attitude? Gives me hope bad attitude mistreat customers still keep job....I am beyond mad...
  18. Someone sent something simalar out on FB but I modified a bit... You know you have POTS...when you don't drink or do drugs and get the same effect by standing up too fast
  19. If my heart rate were confused enough, my mind is right there with it....my Dr has said for now no exercise...that word means so many different things to different people and where they are at in the spectrum of health, symptoms, and mobility... I miss my 5 mile walks week days and 8 Mike hikes weekends....I am lucky to do 10 minutes...and that is all over the place...I NEED to do something, but on those days that no matter what I do the HR is high or jumping like a frog....should I try to do anything ? Like just stretch on the floor? Should I just take rest? I know each persons body works different but would like feedback and try anything suggested... My mental health would feel better with yes try to do...or maybe just breath thru the bad days and don't...
  20. Thank you guys so much! I have a follow up in couple of weeks, I put it on my spouse and my daughter same thing just a few beats up and down, kept it on them for about 5 min just to see....so I am guessing this is just a part of POTS, the thing is I check because I FEEL it, like a squeeze in my chest...and can feel when it moves up big time....at least I know I am not the only one....makes me feel better...so hard when having good days I get excited and think maybe I am on the mend and BOOM, nope, nasty trick, something like this happens or different to find out it really is yes and no, and sometimes....
  21. No call back and didn't go in ...I am on a new dose of BB maybe my body is just trying to adjust today it dropped to 66-70 and then did 70-80 and then 80-90 and back all over again all in 15 min times....and now it is 110 laying on my back...who knows... I know it's not AFIB in true since but I can feel this as odd as that sounds, and it is not fun ;/ but maybe my body is trying to fight my POTS... Uff...
  22. My HR is moving every second from 80-97... On my chest strap and finger oxygen pulse. It is moving up about 2 beats till 97 and then back down...maybe only settling for a few second but not staying..feel a flutter in my throat, little short breath, and feels like a squeeze when jumps up by 5 beats....I am on BB ... Left messages for doc but no call back I don't feel like need ER but really want to know what to do to make it better. Help....
  23. My IBS is pretty bad and presented itself before POTS flare( tho I suspect had POTS since childhood), when I mentioned POTS to my GI dr(before diagnosed) he said it thought it was highly likely it was autonomic and would explain why i had two episodes of diverticulitis before presenting IBS with sever spasms, bloating, colic like a baby, both ends,that would not pass...that would land me in ER....nortriptyline has helped my greatly...still have issues but not in ER all the time... You may consider doing a little research into Sucrase-Isomaltase Deficiency/Congenital Sucrase-Isomaltase Deficiency....tho it is usually found in infant, my daughter was finally diagnosed when she was 16 and her symptoms didn't start presenting till when she was 12..and full blown at 15... They thought she had gluten intolerance or celiac, but tested negative... This was found during a colonoscopy biopsy...
  24. Anyone who wants to PM me to join are welcome to I know we are all in different places in terms of mobility ....but always good to have sowmthing to aim for no matter how high or low....any movement is progress
  25. I have GI issues, constipation....I was on propranolol of 10 mg 2 times a day....and I think it made it a tiny bit worse...but hard to tell. I just switched to metorpolol and it seems a bit better, but I had asked about the side of effect as I read all beta blockers have possible side effects of GI issues...Dr seem to think low dose should not impact, however I think my body sees to pick up on any dose and impact my HR and GI.... It is tough when family can not understand how you feel, tho my family is supportive sometimes they just don't get it, you look ok, your talking ok, and kinda like suck it up and push thru....I don't have immediate family in the medical field, but my spouse has renal failure last 19 years...and that comes with a whole host of issues, so we are honorary minus the degree you can say with all the exposure we have had....so since he has hear issues...sometime he thinks he knows what I am going thru...and he for sure understands it *****, but it's not just HR....it comes with a host of of other things that you can't just push thru.... I hope you find a way to worth thru this 'possible' side effect it is awful being constipated! If you need ideas on thing that MAY help I have a ton I use ( not guarantee but do help)...
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