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Everything posted by pink1975

  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.
  15. Oddly enough, when I am super tired like that I find that taking a xanax helps. It's the exact opposite of what you would think should happen.
  16. Every summer we attend a summer music festival in July. It is hot, hot, hot. Luckily I have a handicap placard for (third summer) my car and no longer have to walk the mile from the parking area and I am allowed to sit in the handicap area rather than standing in the grass in general. Lately, I have been wearing compression hose and that does help me walk longer distances (although there are still some days where it is a victory to walk down my driveway to get the mail). However in the July heat I am pretty sure they will just make me feel worse (it's only in the 60-70's here now and I have been skipping them already) Anyway, I am seriously considering getting a cane for this event even though most days I do ok. I am not nearly as POTSy as some people so I am feeling a little whiny and like a faker for even thinking of it. Thoughts? I thought it might be useful as I can usually walk a little further in the store if I am the one who pushes the cart, even though I still feel like crud.
  17. Before my POTS diagnosis I was first shown to have very low Vit D. My level was 5 which was the lowest my Dr. had ever seen. I am still low now but better since I took 50,000 vit d daily for months. I still take 2000 daily, when I remember, lol. I have never been one to sit in the sun as I feel crummy being in the heat. Also, I live in the north (46 lat.) where it is pretty hard to get sun or even be outside because its too cold in the winter. I also have an office job which really doesn't help.
  18. I am completely gluten free, but I was diagnosed with celiac two years before my pots diagnosis. I definitely have more brain fog with gluten, but I also get violently ill immediately after eating even a crumb. Then I get a couple days of severe muscle and joint pain with a week of brain fog to follow. I do notice that I have less brain fog with gobs of salt. I was told by a doctor that a lot of my weird stuff (like seeing stuff moving that isn't and trouble with saying the right word, like saying marshmallow when I mean mushroom is because of not enough blood reaching the brain) I assume the increase in blood volume from gobs of salt helps get more blood to the brain
  19. I thought I might be over reaching with the temp thing, but right now, that seems to be my worse symptom. I am freezing most of the time now, even completely bundled up in front of the heater. I am really struggling with the change from summer to winter, I assume this is the "October Slide" that Bigyskyfam mentioned. One good thing, yesterday, I was working on pulling out an old crocheted afghan and had taken it in the car with me to work on (hubs was driving). I had it on my lap as I worked and realized that I felt better in the car with a blankie on my lap so since it was already perfectly lap sized, I stopped ripping it apart and it is now my car blankie....lol. I think I will make some more lap sized blankets for use in my office and at home when watching tv.
  20. Today it was chilly outside (for me at least because I can't tolerate either cold or hot temps) and I had to walk from my office to the main building. For some reason, I went without putting on my shawl. I walked to the building which is just across a small parking lot. I felt fine, maybe a little winded but walked inside. I went about 50-100 feet and I suddenly got goosebumps and the feeling that I was going to faint. Luckily I didn't but, yuck! My question is does going from cold to warm (or from warm to cold) trigger symptoms? Could it have been a reaction to trying to adjust to the change in temperature or was it more likely from the walk? Thoughts?
  21. Just whining for a moment...lol. BRRR! I am freezing today. Been having a bit of a flare this week. Today I just literally cannot get warm. Feel cold right in my bones. Sitting here in layers (tights, knee socks, a skirt, a tank top, long sleeved shirt, jacket and boots and a scarf) in front of a space heater and I am still goosebumpy and cold. It is making me cranky, lol. I forgot my fingerless mitts today, or I would be wearing those too. LOL, that is all.
  22. I just asked for one since I have some days that are more difficult than others, especially when it is either too hot or too cold. My Dr. had the form at her office and then I took it to the DMV and they didn't even ask about it, I just paid the fee and got it. Mine is temporary for only six months (although this is the second one I have gotten) since my Dr. keeps saying I am going to get better...lol.
  23. My insurance actually didn't pay any of my TTT. Which I found odd, but didn't care because I was so tired of not having answers. It was really expensive too...
  24. I would try to do it again. My ttt lasted 60 seconds only because I failed so spectacularly in the first 30 (my heart rate shot up to 170 and I almost passed out, plus it felt like all of the blood in my whole body was trying to exit through my feet) but they needed an additional 30 seconds to get my blood pressure reading. But, I was not allowed any medication or caffeine for several days prior to the test and was not allowed to even drink water for the 12 hours prior. Drinking caffeine and water prior to your test may have affected yoru results. I also had a stress echocardiogram (sp?) right before the test and the nurse and I realized that I would probably fail the ttt test because as soon as they hooked me up to the monitors and then had me get up from lying down to walk over and sit in a chair my heart rate and blood pressure rose quite a bit. This was even before the test officially started.
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