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pink1975

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About pink1975

  • Rank
    Advanced Member
  • Birthday 03/15/1975

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  • Gender
    Female
  • Location
    Hayward, WI

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658 profile views
  1. My 17-year-old daughter has been having POTs like symptoms for the past few years and we finally got to the point where the doctor ordered a holter monitor and referred her to pediatric cardiology for an echocardiogram. We had that appointment today and were blown away by the fantastic pediatric cardiologist (Dr. Legg) at Essentia Health in Duluth, MN. He was super friendly and knowledgeable. He looked at her echo and confirmed that her heart is healthy so we have no worries there. He spent quite some time going over her symptoms, checking vitals multiple times and looking over her chart before telling us she definitely has POTs. Then after questioning me about my own POTs as well as asking about my symptoms and whether I'm hypermobile, etc, as well as how "bendy" my other two daughters are (they were in school though) as well as what skin symptoms, etc each of us has, how well we heal, and even things we never considered, he thinks we all have Ehlers Danlos. He said that as we learn more about it we will all be like, aha, that makes perfect sense! The older two aren't as bendy as myself and my youngest but have skin symptoms, multiple sprains and strains, and my middle daughter has scoliosis) He didn't put her on meds yet, just lifestyle, more hydration, salt, better diet. He didn't want to try meds right away because he said beta blockers make you gain weight (yep, I know, lol). She goes back in 6 months and he would like to meet the other two daughters and refer the family to a connective tissue specialist. He told us he hates how most doctors give you a bunch of unrelated diagnoses (like my celiac, fibro, pots, and asthma) and treat you for a bunch of things without finding out what the problem truly is. He thinks daughter's irritable bowel is from the Ehlers Danlos and also says that it's terrible how doctors tell people it's all in their head or throws medications at them and leave them to go. (Sorry if I'm rambling or not making sense, lol, it's been a VERY long week overall and today was a bit rugged).
  2. I feel better when I drink alcohol (I think it seems to calm everything down). I have to be careful because if I overdo it I am super tachy the next day and barely able to get out of bed, but if I remember to hydrate, hydrate, hydrate and take it easy it's usually ok. I drink Truly sparkling water because it's low carb and gluten free.
  3. Wow, this is interesting and makes sense.
  4. Two weeks ago after a little trip to the ER I ended up getting an increase in my dose of Metoprolol. This seems to be doing the trick as far as keeping my HR and blood pressure under control. However, I still feel like crud, pooling (I know, compression stockings, lol, I've tried them and usually end up taking them off), fatigue, coat hanger pain and shortness of breath, even with a normal heart rate. Is it possible that the medication lowering the heart rate is actually taking away the actual compensation of the heart to bring the blood back up to the brain? Sorry if my question doesn't make sense, I'm feeling a bit foggy today.
  5. Maybe a cane? I sometimes use a cane when I know I'm going to be upright or walking a lot. It helps me feel more steady and balanced and gives me something to lean on when I feel like I might be going down. Not sure why but I can walk so much more with it than I can without it.
  6. I got the works, blood work, cardiology workup, etc. It's "JUST" POTS.
  7. My dental chart says no epi for the same reason. I usually remind them again when I have an appointment but I didn't last time and accidentally got the numbing injection that had epi, whoo was that a ride. Make sure you remind them even if it is written at the top of your chart, circled and highlighted in bright yellow as mine was, lol.
  8. Just whining, lol. I have had POTS for years and I know all of us want to go back to before we had it, but I would gladly take going back even a couple of months to where even though I felt like crud most of the time I actually felt better and more functional than I do now. Spent Friday afternoon in ER getting IV trying to help this horrible, nearly constant coat hanger pain. Being upright (even sitting) has become difficult and therefore I am just feeling whiny lol. Meds keep my heart rate in check but I would even take tachycardia over the pain. That is all, haha. Rant over.
  9. I've always had anxiety, as long as I can remember but I think when I was first officially diagnosed with panic attacks in my 20s, well before my POTS diagnosis that it was actually POTS and not really panic attacks. I do feel anxious now but I honestly think the majority of it is actually POTS.
  10. I also have the issue with either feeling like I'm holding my breath or that I need to consciously tell myself to breathe in and out. It is weird. It's like my body forgot how to do it by itself sometimes. I have tried compression stockings but found them to be super uncomfortable although I am looking into the footless ones currently.
  11. Bladerunner, I was diagnosed with asthma before POTS. I take singulair daily and have xopenex for attacks. Xopenex is levalbuterol so it is kinder on the heart, doesn't make it race as much as plain albuterol. I went to a pulmonologist for diagnosis and I think the test was called a methacholine challenge.
  12. Lol, you are right everything here is in the middle of nowhere. I see Dr. Christina Hyser at Essentia Health in Hayward. I spent years seeing literally everyone it felt like. I would mostly get told it was anxiety or all in my head or stress, blah, blah, blah. Finally on one of the dozens of ER trips I got a Dr. (who unfortunately just retired) who felt that my heart rate issues were something electrical. Of course I googled and brought what I found to Dr. Hyser who agreed that it was likely. She referred me to a cardiologist who did a bunch of tests including a poor man's tilt (where you take your heart rate and blood pressure sitting and then standing) and felt that this warranted a closer look. I then got referred to cardiology at St. Mary's in Duluth. I got a battery of tests on my heart which showed a healthy heart and then I had a tilt table test which I failed spectacularly in 30 seconds and here I am. Dr. Hyser is awesome and has been one of the only doctors who hasn't blown me off. In the course of searching for why I felt so yucky all the time I found out I also have celiac, asthma and fibromyalgia as well as dozens of allergies along with my POTS and she is awesome with all of it. I have been all over including Marshfield Clinic, Mayo in Eau Claire, numerous in and out of network specialists and so far the best have been Dr. Hyser and everyone at St. Mary's/Essentia Health in Duluth/Hayward.
  13. Hi @BuffRockChick. Where are you located? North or south of Rice Lake? Thanks for the reply. I thought that it would make sense about putting the feet up but since I also have asthma I wondered a bit if it was just a fluke.
  14. The past several weeks I have been having a doozy of a flare but as it gets worse I have been noticing an increase in shortness of breath. Since it is spring and I have asthma and allergies I assumed that was flaring as well and have been taking my puffer like crazy. Yesterday I felt so bad that I was considering a trip to ER. I realized I was pooling more than usual so I put my feet up on my desk. It was almost immediate that my shortness of breath was relieved and I felt much better. I think I already know the answer, but wanted to run it by others, could the shortness of breath be POTS related and not asthma and has anyone else noticed this same type of relief simply by putting their feet up? Also suffering a lot of coat hanger pain and wondered if this too was caused by lack of blood due to it being all pooled in my extremities.
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