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Everything posted by kalamazoo

  1. Hey guys, I've had arrythmias from my POTS for as long as I can remember and I'm just wondering if you guys have them too and what they feel like? How do you deal with them? Are you guys able to drink alcohol? Have you found any effective medicine? Does anything make it worse? Personally stress exaggerates my symptoms and so does exercise but I know everyone is different
  2. It depends on your POTS to be honest. I have hyper pots and when I was tilted upright I went into hypertensive crisis and couldn't speak. But I have really bad problems with blood pressure. I felt like poo for a few days but I recovered. My first TTT wasn't so bad. But my symptoms have gotten worse. I hope everything goes well!
  3. That BP is fine, mine goes up to 150/100 usually when i'm up lol.
  4. I have been semi happy about the doctors at UW, but today I did see the head of the endocrinology dept and did not have a good experience. Will not be going back.
  5. I will be seeing Dr So once a month, he's working with Dr Oakley on my case as well. Which is nice, he feels like he's actually trying to help although I'm not sure where it'll go. I'm about to start a new medication, it's called lebatalol. Dr So and Oakley are neuros, they don't think I need to go to a cardio but I'm also going to see a new primary care next week and will get referrals for a new cardio and ortho. I see an endo tomorrow morning at UW also. I'm hoping I can get some answers, but so far I don't have neuropathy and I have confirmed hyper POTS.
  6. Yes, the weather has been horrible! And my doctor, confirmed my POTS diagnosis. But doesn't seem to want to do any further digging. I have an apt with a endocrinologist on tuesday so I hope I can maybe get some more info from her.
  7. The pooling is an uncommon symptoms of pots, but it still considered a symptom. I have severe pooling in my extremities and was told it is not dangerous. Just to kind of give you a bit of comfort, if that's possible.
  8. My HR went up to 180 and I went into hypertensive crisis during my table tilt test so I can't really compare, I will say though that I would get a second opinion maybe. I would try lifestyles changes as well. Drink more water, watch your BP at home, try different foods/ maybe lose weight if you have to. But if your BP isn't insane and your HR isn't insane I would maybe see a cardio, maybe SVT or IT, which a cardio would have to test for. Which both are essentially high heard rate. Obviously I'm not a doctor, but those were ruled out with me first before they sent me for further testing. Could
  9. If you need more clotting, one thing that could help would be to eat vitamin K, leaf greans. But if you are having clotting factor issues have your sed rate and vitamin k levels checked. I wouldn't change anything without finding what exactly is wrong first.
  10. You know, I stopped taking propranolol, and once I did my blood pressure went down (after slowly going up for about 6 months) and I feel like I can breathe easier. I will say though, that a lot of the symptoms you have described sounds like stuff we POTsies deal with regardless. I am nauseous every day, and short of breath. I have vertigo and dizziness etc. I find I do feel better though OFF medication. Yes my HR is high, but overall I just feel more "normal"
  11. When i first got sick I was 17, I was really really sick. Horrible random health issues, and erythromelelgia on top of my POTS symptoms. They were all brushed off as me being clinically depressed. The brush off made me more depressed while I got sicker. I became suicidal and tried killing myself one night after about a year of being bedridden and not leaving my house. Was in the psych ward for a while afterwards. Now I am happy and live a semi normal but restricted life but my entire thought process has changed. But maaaaaaan it has been some work getting here. And when i say work, I
  12. yes! I feel horrible after eating but I also found out I have insulin resistance. I've found that eating small vegan low carb meals every 5/6 hrs works best for me, the smaller the meal the better I feel and I'm constantly hydrated. How I feel is relative to my blood sugar/insulin levels as well.
  13. odd that you mention the swallowing thing, I have issues too. It's like there's something in the back of my throat. Swallowing is frustrating and if I drink something I basically have to gulp. I also have hyper pots.
  14. So I just moved to Seattle to be able to see the specialists over at UW and had my autonomic work up. During the table tilt test I was so miserable and almost went into hypertensive crisis. Once I was put upright I could barely think or talk or function. I just felt really disoriented and felt that way the rest of the day. During my test my heart rate went up to 170 and my blood pressure went up to 175/110. It was actually horrible. The breathing tests were also very uncomfortable and made me extremely light headed. And the skin test left me with some kind of weird rash on my arm that still it
  15. I don't think is necessarily a judgement as I'm sure you're aware of the repercussions of smoking. But seriously consider what you're doing to your already struggling body. Cigarettes also affect your blood pressure and if you have regular pots that increase in blood pressure might help you alleviate your symptoms. But seriously, this is something you need to speak to your doctor about because no one here is going to condone smoking lol.
  16. gosh this is so scary, I have a pineal cyst, but it's not a tumor or cancerous but I still worry for stuff like this. I hope everything works out
  17. I have high levels of c reactive protein but my ANA came back negative so they are confused =/
  18. So I recently moved and have been painfully active. About 10k steps per day. Well my legs, back, hips etc all hurt from it and today I noticed the lower part of my knee is red and hot. I know blood clots are common in knees but are in the back usually. I have red hot knees only in the front in a small section and it isn't painful at all. Has anyone noticed anything like this, wondering if it's maybe arthritis or something.
  19. I was bulimic around the time when I first got really sick. I believe there's a correlation because now, any time I've ever been sick and thrown up I immediately feel HORRIBLE.
  20. Today I saw a woman with a fan attached to her neck, it constantly blew air up at her face which I'm sure helped her. I just moved to WA from AK so the weather has been a bit much. I can't be outside in direct sunlight or I flare immediately. I make my trips short outside and park as close as possible and also have handicap parking to help as well. I wear loose white clothing and flip flops and leave the house with my hair wet usually too. I carry around cold water too, really any bit helps.
  21. One odd way I cope with them is I tap on my collar bones so it drowns out how fast my pulse is going and I can't feel it and then I count the tapping and eventually I can calm down. That works for me anyways.
  22. adrenaline rushes were the start of my POTS symptoms years ago. Doctors told me I had anxiety and panic and that I was having panic attacks. Well little they did they find out that I had hyper POTS and it was something along the lines of excess adrenaline being released etc. I would look into it, don't believe it's just simply black and white. Adrenaline rushes aren't dangerous from what I have been told and I've had my heart checked out several times. I've been having them for about 15 years now.
  23. I feel a million times better when i eat small meals. I also fast a lot which helps too. I'm vegan and gluten free and still am which has also helped too. No meds yet but I'll need metoprolol if my diet isn't enough to help fix my insulin resistance. I eat a very low carb high fat diet. (Keto) i don't follow aany diet meticulously but this is kind of what has helped me make guidelines
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