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kalamazoo

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Everything posted by kalamazoo

  1. I've been on propranolol 30mg a day for about 3 years. But was recently prescribed ivabradine. My heart races so much and my blood pressure has been high lately but i am paranoid about medications and am scared to take it. I'm wondering how other people felt on it and what side effects are expected as well.
  2. I'm in the same boat, minus the asthma but I never feel like I can breathe in fully it's so irritating.
  3. I have breathing issues as well with my hyper pots. They're currently checking me for mast cell activation syndrome bevause my protein levels are high. I have had pots for about 10 years now. I think it was made way worse and brought to light when i was bulimic in my teens sadly since that's when my symptoms were the absolute worst.
  4. Obviously I'm not a doctor but you sound like you have pretty standard POTs symptoms. I have hyper pots so my symptoms are different, but still similar. Good luck!
  5. Sadly mine has only gotten worse over the years and so has my memory. If you find anything let me know!
  6. Anyone know what the IV is for anyways? I have hyper pots and was being tested for that but didn't receive any type of IV or even a mention of it.
  7. Curious about any alternative things people use. For example doterra oils, magnesium drinks, apple cider vinegar etc. I know there's a ton of alternative healing options these days so curious if anyone uses any or have found some that work? Personally Ihaven't found any worth trying but I was going to try these magnesium based drink called calm or something.
  8. Im hyper pots. I eat little to no salt and drink a ton of water. My bp is usually 125/90. But i also eat a gluten free vegan diet as well per doctor recommendation. Of course every is different but i feel so much better. Talk to your doctor more for sure.
  9. Yes i waa diagnosed by a doctor in washington, but since then my symptoms have changed and they're finding different things. But I've been sick for about 10 years now. My first 4 were doctors telling me i was crazy and depressed. So i very much understand. I had to bring the paperwork on a table tilt test to a cardiologist and inform him of it to get it lol. Basically diagnosed myself because of this site. A lot of doctors just don't know because it is fairly rare. Find a good doctor who is oj your side and do your own research. My eoctor basically gives me whatever test or referrals i want because she knows how much research i do before hand. No one knows your body like you. Good luck! And seriously almost all of us here have had TTT done and we are all still here so don't worry. It'll be fine and over before you know it!
  10. When I first got sick, 10 years ago, I was having symptoms of erythromelelgia, and my nail were coming apart. They were literally coming unlayers like some kind of flakey dough, it was so weird and no doctor ever could find out why. Oddly enough my nails are fine now.
  11. I take propranolol, not extended release. So for it to be effective all day I have to take it 3x, which is 9 pills a day lol. I've heard a lot of different stories and reactions to medications and was recently prescribed ibdredine? I'm paranoid about medications and I'm hesitant to take it. Also I find it interesting what people say about sunlight because I avoid the sunlight like I'm a vampire. It makes my skin hurt and my veins swell and I get pooling in my extremities, I do take a vitamin D supplement though.
  12. You sound like me, I'm 27, a woman and have all the symptoms you have except I get high blood pressure now instead of low. And let me tell you, the tilt table test is ezpz. If you tense up too much it might change your results so try and relax (I know that's hard to do) my table tilt felt basically the way I do every day. Except I was surround by doctors and people who could help if anything happened. That's probably why I like hospitals so much. You're going to feel the same as you usually do, in my experience anyways, since they're just recreating the same effects of your every day life. So really don't worry about it. I didn't get any medical injections or anything, they just monitored me and it was over pretty quickly. I don't know why they'd give you any type of IV since I didn't have one so I would assume it's the same for you. Good luck!
  13. I take propranolol when i feel worse than usual. I often just ignore my symptoms as much as possible as I've had them for 10 years now. Been on propranolol for 3. But when I'm feeling abnormally symptomatic sometimes ill take it twice in a day (30mg) at a time.i actually used to have perfect or low bp but over the years my symptoms have changed and so has my blood pressure and ever since i had kidney stone surgery mine has been high. I also have a cyst in my pineal gland that they think might be attributing to my insomnia. Im always tired i could fall asleep doing just about anything... except trying to fall asleep. I lay here for hours, haven't noticed if propranolol helps or makes it worse because it's already been so bad for so long lol
  14. Propranolol kind of saved me. But i have hyper pots. High blood pressure and heart rate. Usually just my diastolic is high. Around 90. But my propranolol helps me not feel like a tense rubber band.
  15. Does anyone have any pineal cysts? I've had one for a while I guess and over the past 5 years it's grown about 10mm, reaching 13mm currently. After googling a ton and trying to learn as much as possible I did read a connection between POTS, dysautonomia and the possibility of it being connected to pineal cysts. It seems like a long shot but I'm curious if anyone has one as well?
  16. Yes, I have high bp and high hr. I changed to a vegan extremely low sodium diet which helped. I also drink a ton of water. Am extreme amount. That also helps. My hyper pots gives me issues in the day and the morning but I'm okay at night. My symptoms are all over the place but my diastolic is high. My BP is usually 130/95. It's been all over the place lately too. I have propranolol, it kind of held but doesn't lower my BP too much. Just makes me feel more stable as far as hr spikes
  17. Honestly and this is just me, but for years I had severe panic attacks that felt exactly like that. Thought I was having a heart attack too, the impending doom is the big indicator because I genuinely thought I was going to die. I was having adrenaline surges with my hyper pots which I now take propranolol for. Works wonders
  18. I have a huuuge array of symptoms, but lately I've been getting high Diastolic HP. My systolic is some times elevated but it's mostly my diastolic. My BP was just 130/95. I'm kind of worried. I don't have typical POTS where my BP drops when I stand or am upright but I have adrenal POTS, I can't remember the official name but my BP usually is normal, but for about 6 months, it's been high like this. Anyone experience something similar?
  19. Do your veins hurt as much as mine do? When they swell it throbs so bad. I cant do dishes or use my hands for very long
  20. Wow I havent heard of anyone with the same symptoms. That makes me feel better no offense. Its sadly comforting to know my symptom is truly related to the disease. I hope you can survive through the summer too! Also I havr a question when you sleep do your hands swell?
  21. Im hyper pots and get these. Theyre horrible I know. My heart rate has gotten up to 200 before. But my doc says they're not dangerous they're just really uncomfortable and theres no point in calling an ambulance or freaking out. She said if your heart is healthy this wont harm it. Ive had stress tests and echocardiograms and my heart is fine so now I try to ignore them. They really suck though. If I get nervous this happens also.
  22. I have severea heat intolerance but my vains vasodilate and swell pretty bad. Its my my uncomfortable symptom besides tachycardia. I get red and blotchy and swell. Its horrible my legs hands and knees swell and eventually if I get too hot I can't walk. My doc recommended a cooling vest.
  23. I had such bad pain in my arm that it radiated all the way up my chin and down my arm, it was so bad. I went to the ER and they said I had pericarditis. (which I didn't) Because I went for a follow up and they said that I couldn't have ever had pericarditis because there was no apparent swelling or anything of the sort. I don't understand the technicalities of pericarditis but I thought I was having a heart attack and it was horrible. But I have chest pain almost every single day. Standing up, breathing deeply, eating too much are a few things that trigger it.
  24. I wikl for sure contact her on monday so I can hopedully get in to see her. Ill be there next week and want to hopwfully get on some kind of medication before I start school in the fall. Thanks everyone. Also I thini it would be neat to have a meet up. I dont know anyone else who goes through this so it would be nice to have someone relatable. .
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