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About Pistol

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    gardening, my family, reading

    " And I think to myself - what a wonderful world!"
    Louis Armstrong

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  1. @p8d - Yep. In my case it is due to photosensitivity ( bright sunlight ) and heal intolerance, both caused by my POTS. I cannot go outside in the summer unless it is early morning or after sunset..Even with sun glasses on.
  2. Again - for your POTS related symptoms I would suggest an AUTONOMIC specialist, not an autoimmune specialist. Be well!
  3. @Scout - I used to be the same way. At Dr appointments the BP would be 90/50 and minutes later the doc would take it and it would be 148/98. Once I kept an hourly journal for 2 days and my doctor said that he could not even treat me because the BP would change so erratically and fast! Every hour it was a completely different reading. But my specialist started to treat me with BB and calcium channel blocker ( in addition to other meds ) and the BP switched to being more even. Today I am well controlled on weekly IV fluids in addition to meds.
  4. I second what @MomtoGiuliana states. For me extra BB is the first choice - if that does not help IV fluids ALWAYS fix it.
  5. @Outaker - thanks, that might be what is going on. Her BP normally runs 150/90 on a good day ( with meds ) but used to get as high as 240/120 and higher prior to meds. She used to be in hypertensive crisis often. @Stark - that might be what is going on. I took her BP this morning and it was 150/90 sitting but her pulse was 50. So when she gets up and her HR goes to 80 - I guess that would be still POTS. Man - we people act weird!
  6. @dannyg - I agree with @bombsh3ll. It sounds like you only ever tried the one medication. an autonomic specialist could help you control your POTS symptoms.
  7. I currently have my sister visiting. She also has hyperadrenergic POTS like me and is going to see my autonomic specialist. As we are preparing for her appointment she told me that she NEVER has tachycardia, only bradycardia. But she has every single symptom that I have, including hypertension upon standing, orthostatic and exercise intolerance, brain fog, fatigue, palpitations … you name it. And she has POTS. I have never heard of someone who has POTS with bradycardia - only that sometimes we can get bradycardic but mostly have the tachycardia. Anyone else here have POTS without tachycardia?
  8. @Derek1987 - my PCP and I have been wondering for years if there is a connection between the immune system and POTS. I used to hardly ever be sick, despite working in a hospital and having a school aged child ( you know - they bring home all the goodies ). Since onset of POTS not only do I get sick more often but also become more ill and often I need 2 rounds of antibiotics. And I am homebound - so I don't go anywhere to get germs. But I have not yet been able to find ant evidence or research that would explain that. Regarding the tonsils - it sounds like a tonsillectomy would definitely fix that for you. Frequent infections like that can wreak havoc even on healthy people - let alone a dysautonomiac! But I personally - through experience - would wait with that surgery until your POTS is more stabilized, simply because it is not an easy to recover from surgery. Do you see an ENT doctor?
  9. @dannyg - I actually was asking if you ever saw an AUTONOMIC specialist and if so - how did they diagnose your POTS?
  10. @dancer65 - thank you for your response - that is powerful testimony and I am sure it is familiar territory to many of us! Again - thank you for your honesty and sharing your story!!!!
  11. @Derek1987 - I have hyperPOTS and did not do well with Midodrine. In my case it definitely would make my symptoms worse if I took it in a hyperadrenergic flare. What symptoms did your doctor prescribe it for? I would clarify this with your doctor. It is difficult to say if your symptoms are from POTS or anxiety, they can mimick each other. Since you have a diagnosis of anxiety it is possible that you should check with your psychiatrist to see what else you could take. Also - if what you are prescribed to take is not working and the anxiety is uncontrollable you can go to the ER - they can give you something to ease the symptoms and since it is the weekend and you already took more than your daily dose of Xanax the ER is probably your best choice. Don't feel that you have to endure - anxiety ( whether from POTS or not ) is real and should be treated right away.
  12. @Derek1987 - I get those looks too. Once I went to the ER b/c I could not walk without fainting. When I told them they said they wanted to see if I can walk b/c they thought I meant there was something wrong with my legs. I tried to explain but they insisted. So I got up, took a few steps and promptly fainted. I got hurt in that fall too - apparently they did not even catch me. Derek - I am really sorry about all that is going on. I think that maybe your wife might think that you can do more than you say but we here know that you cannot. It is the nature of the beast - that is why they call it the invisible illness. And she probably has been leaning on you a lot due to her illness that now it is hard to understand that she no longer can, at least not at the moment. And since you have been doing so much for your family that now it is frustrating and downright depressing that you cannot do the simplest things. I understand - I have been there. Both of you need to be patient and understanding of each other - I have learned that I cannot expect others to know what is going on inside me. She is always invited to ask questions here on the forum - we my be able to explain what it is like. In the beginning of my illness it was difficult for my family to "get it". But once I showed them a video about POTS and thy heard testimony from others it got better. I also had my husband read the dysautonomia project. It is one thing for your wife to know that you are ill ( as she knows from doctor's appointments ) and another to know what it is like or to accept the reality of you not being able to function. Hang in there - it is a strain on any relationship - you are not alone.
  13. @bombsh3ll - although you lost me with a lot of the medical lingo ( most here are not in the medical field ) I do believe your theory has a point. Once we get symptomatic we become inactive due to our symptoms, which then lands us in bed or at least stationary. So by the time we go to see a physician we already are deconditioned - but the reason for this is our symptoms. In other words: the symptoms cause us to decondition - not the other way around. The same with anxiety: our symptoms are scary - so we become anxious when we get them, not the other way around. Unfortunately the medical community still thinks that the mind controls the body - many docs have not yet discovered that with the discovery of ANS dysfunction we now have proof that it is not always that way.
  14. Have you considered changing your eating habits or diet? Are you allowing yourself to retreat when overexcited?
  15. Dear @Derek1987 - I totally get it! My husband - thank god - is a pro in living with a Potsie, so he does not ask things of me that I cannot - or should not - do. Hanging a curtain is too much to do for you for several reasons: standing and lifting your arms above your head. that activity could easily result in syncope, it would for me. I am sure it is difficult for your wife to understand why a "simple" activity such as hanging a curtain is so hard for us and she might blame this on laziness or procrastination when in reality it is simply not something that is good for you to do. Have you asked her to read our family guide? You can find it here: I understand that you have been referred to a specialist nd be hopeful that you CAN get better with proper treatment. Until then try to ask a friend or neighbor to do tasks that are not wise for you to do. And regarding a date: how about getting the kids out of the house and ordering take-out and a movie? I used to rest up all day for a "date night" like that. And although I would fall asleep half-way through the movie it was till some "Us"-time and counted for a date. --- 2 years ago we celebrated our 25th anniversary and went out to a restaurant ( hven't done that forever ). We ate, had one drink and he practically had to carry me back to the car. It took me 3 days to get over it. So - being together, having a nice talk or sharing a joke or meal in good spirit is like a date for us now. And it is cheap, too!
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