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Shannoncr

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Everything posted by Shannoncr

  1. hi i had some medical records from 2011 sent to my primary care on May 15 for her to review & summarize to send to Dr Blitshteyn. she was also going to send summaries from my cardiologist & psych team (they all wrote their own summaries, she was just going to forward them all together) ... my question is, how long should I give her before I call/email to see if she’s reviewed them yet? i had asked her to email me when she sent them & I have yet to hear from her. my other question is, do I need to ask my primary care for a referral to a rheumatologist & neurologist/neurosurgeon? I have a diagnosis for neuro. I don’t have anything concrete for rheumatologist (except my ANA tests positive) but I do have a lot of the symptoms of an autoimmune disorder as well as a long family history of random autoimmune disorders. thanks in advance shannon
  2. i’m a weirdo & have tried quite a few beta blockers. my first one was propranolol (I forgot the dosage but it was the lowest dose) but after a few months of taking it, my heart rate dropped in the 30s & I had to come off it. (This was back when I had low blood pressure) i was also prescribed this for anxiety. the next one was atenolol (12.5) i did well on it but the same thing happened. i couldn’t take it if my heart rate was less than 60 & eventually they took me off it altogether. (also back when I had low blood pressure) then I went on losinopril (2.5) & carvedilol (3.25 twice a day) - I was now diagnosed with hypertension - it worked for a month & the PVCs came back with a vengeance. so they bumped losinopril up to (5) & carvedilol (6.25 twice a day) which worked for a month, then the PVCs got worse & all the while I was still having tachycardia. (my bp was controlled on these meds but heart rate/PVCs weren’t) now i am on metoprolol succinate ER (25) after the 12.5 was unsuccessful but i also have metoprolol tartrate for breakthrough PVCs. still have tachycardia & often my bp is still high but i am so sensitive to meds my cardiologist didn’t feel comfortable raising it until i see neuro/getting second opinion.
  3. My mom uses Walmart. I don’t know if they deliver but she does the pick up service. She loves it
  4. i know laying on your left side helps aid in digestion, maybe that’s why your heart beats slower because the energy is going somewhere else?
  5. @sheal hi, I too have joint pain in my fingers. Lately it’s been my two pointer fingers but I think I have dislocated them at the middle knuckle, lol. My thumbs hurt too. I do get random pains in my fingers, usually more towards the tips of my fingers. Sometimes my fingers will lock up. I don’t know if it’s a POTS thing or just a weird random thing. sorry I can’t be more help, but you’re not alone in finger pain!
  6. @Delta i live alone so I can relate to the anxiety you feel. I am lucky & have family close by, if need be. I have fallen (fainted) or come close to many times home alone, it is super scary. My best advice would be to try & listen to your body. If you’re feeling yucky, then you’re feeling yucky & shouldn’t push yourself. I’m sure your mom & your husband know you’re not feeling well & need a little extra help until you start feeling better. It’s okay to ask for some help when you need it! 😁 hope it gets better for you soon!
  7. not sure how far you are from Palo Alto but Stanford university has an autonomic disorders clinic. https://stanfordhealthcare.org/medical-clinics/autonomic-disorders-program.html
  8. @ANCY I am so sorry you’re going through all of this! I hope you get better soon! None of my meds have side effect of slowing respiratory rate. @KiminOrlando I’ve never added any pulmonary function tests. I also don’t know if I have an autoimmune disease, I am assuming I might because my ANA tests positive always & my dad’s side of the family, his siblings have random ones (One has Crohns & a congenital spine disease, the other has this weird skin one I can’t remember the name, it looks like he has little tiny burns all over but it’s not painful or anything) & his mom had type 1 brittle diabetes (which I have been tested for) & my dad has uveitis (he was tested for the Bernie Mac disease & it’s negative). I also haven’t been diagnosed with Dysautonomia, I am waiting for an appt with Dr Blitshteyn. The acid reflux is tough for me to answer. I do get it sometimes, but not all the time. It’s gotten better over the years. Is the pulmonary lung test something I can ask my primary care to set up or refer me to? Same with the autoimmune testing? I think a huge problem of mine is that when I am in the doctor office, I might not be having any symptoms or I’m having symptoms that seem normal to me because I’ve had them so long so I don’t bring it up. I minimize everything. If I complain about things, like how I might not be feeling or why i can’t do something, I’m often made fun of by family (they call me Barb, which is my dads mom’s name. She was ill all the time - but everything was invisible until her bones started breaking) I also get afraid of offending the doctor when I ask for things. Like I asked my cardiologist if she thought I had POTS but she told me no because it would’ve shown on my TTT in 2005. My symptoms have changed since 2005 (diagnosed with neurocardiogenic syncope) & have progressively gotten worse in the last year. She wants me to get a second opinion & see neuro. @blizzard2014 Are the blood clots in your lungs painful? Aside from having trouble breathing, like does it hurt to try to take in deep breaths?
  9. @WinterSown my brother had severe asthma as a kid, thank goodness it’s gotten better as he’s gotten older. My dad doesn’t have asthma but when he gets colds, it goes right to his lungs. My papa (my dads dad) said my dad was in an incubator for a bit because his lungs weren’t fully developed. I don’t wheeze or anything. No mucus. The cough is def associated with the palpitations -which knock on wood, haven’t been as bad lately. It’s just a really strange feeling. I wish I could describe it better.
  10. hi, I could be totally alone in this, but does anyone else feel like you’re not getting enough air? I get out of breath doing almost anything but even when I am just sitting here, I feel like I just can’t get a good enough breath of air. I often sigh a lot (& loudly, almost like a panicked sigh) but it’s involuntary. I noticed on my discharge paperwork from the hospital a couple months ago, my breaths per min were 16 when I was triaged & upon discharge it was only 10. The breathlessness is way worse when I have palpitations because they take my breath away & I cough involuntarily, it feels like a way to restart my heart or something. I dunno. I could be totally crazy. Even when I yawn, I feel like it’s not a good yawn.
  11. I have no answers but my fingers are crossed for you that it lasts & you continue to improve!
  12. Neurocardiogenic syncope is a sudden drop in HR & BP causing you to faint. it’s weird. sometimes stress does it to people. sometimes it’s just standing too long. it happens to me when I see blood lol I’m such a baby. i don’t want to freak you out anymore than you already are, but have they done any MRIs? i hope you find some relief soon.
  13. @Bluebonnet08 I’m not sure what my heart rate was, they had trouble finding a pulse. It’s only happened three times & they didn’t happen close together or for any particular reason. I know the first time it happened, when they were finally able to get a BP it was 54/45 but when I came to, I was fine. Just exhausted, sweaty, & cold lol. It was weird & very unpleasant but I still got the warnings I was going to pass out, just didn’t make it in time to stop it. My cardiologist has always said as long as I still get the warning signs, I’m fine. It’s when they stop that it’s time to worry. 🤷🏼‍♀️ Hope you get some answers!
  14. Congrats on the baby! ive never had a baby, but for years I’ve had bradycardia & tachycardia. My cardiologists never seem so concerned with the bradycardia as they are with the tachycardia. I’ve had quite a few episodes where my heart rate got so low I lost consciousness. My ferritin wasn’t only at 2 when the worst episode happened & doctors think it may have been because of that. When I’d go to doctors or have tests done (like stress tests) they’d always ask if I wasn’t trained athlete because my BP & HR were so low. They had trouble getting me to my target heart rate so after a half hour, they gave up. More recently, I’ve had a huge spike in my blood pressure (it used to be like 90/70) but it’s now like 160/100 (I’m on medication for it now, it’s now around 125/80). Cardiologist said it’s probably genetics (my mom, her mom, & my sister have high BP & were diagnosed in their early 30s... I just turned 34) but who knows. Its frustrating, I know. Sorry I don’t have any answers but I hope you find some.
  15. oh, I forgot. Last year I added two tree peonies! I was afraid the one died but it’s just leafing out now. Here’s the other one (I can’t remember if it’s a yellow or a pink one)
  16. @WinterSown nothing is really in bloom for me right now! My spring bulbs are all done. Stuff is budding and leafing out. The pictures will be better when everything is in bloom. Now, the garden along the fence (chain & stockade) is only two years old. so, forgive the empty spaces. I’m going to fill it with some low growing annuals & zinnias &cosmos again this year until it starts to fill in with perennials. There are a few more perennials/shrubs I’d like to stick in there though. The Lillie’s are from last year. They seem to get bigger every year. The pink and white ones multiply but for whatever reason the yellow one just gets taller and has more blossoms on it each year. I love the smell of them. The garden with the white fence behind it -a before and after. That bed used to be filled with weeds. Then I tore them all out and planted coral bells, black lace elderberry, and those cute little trees. That was four years ago. The today picture, that black lace elderberry will be getting a major trim once it blooms! And the last picture, it’s one of my favorite things about where I live. I get visits from all kinds of wildlife. I live on an incredibly busy street but animals always find their way to me 😂
  17. I love gardening as well. Are we able to post pictures of our gardens on here? I could use some inspiration. 😀
  18. I was at the San Diego zoo by the hyenas when I fainted. When I came to, i was on a security golf cart with my sister holding my feet up and laughing. They gave me potato chips and Gatorade when I got to the “infirmary” lol.
  19. Hi, i haven’t been diagnosed with POTS or OI (pretty sure I have one or the other though) & I do have balance issues. I walk into walls, door frames, countertops, almost anything a lot. I find it’s much worse when I have headaches (which has been pretty frequent lately, going on day 9) I’ve also found my depth perception seems to be slightly off sometimes too. I miss steps or trip a lot. I drop things I am trying to put down on a counter or table etc. full disclosure: I’ve always been known as a clumsy person. I hope you find some relief soon!
  20. @niftyusername & @Pistol this site has definitely helped me to feel less alone & less crazy. it’s not that my parents aren’t supportive (my mom is a nurse so she’s always been the type like, if you’re not bleeding to death, you’re still breathing, you’re fine type) it’s just that with my lengthy history of anxiety & depression, everyone thinks whatever I am feeling is a manifestation of that anxiety & depression (& it may be but it still feels pretty awful). but lately she’s been more concerned, mostly because the fainting & the near fainting where everything goes black but I can still hear all around me but I am like paralyzed... (has this ever happened to anyone? Is it possible I can’t really hear what’s going on around me & i am just remembering it wrong??) & the chest pains but it’s not heart pains, it’s like my actual chest bones & it feels sometimes like there’s a dagger going right thru my chest to my back, & the shortness of breath. I made her watch that “changes” video & the part where Dr. Blitshteyn says “patients with Dysautonomia are very sensitive to medications” my mom was like, this is you - this all sounds like you. I just broke down crying the other because I just want to be normal again but I can’t even remember what my normal feels like. Everyone teases me because I plan everything. My trips to the grocery stores, any errands I have to run, etc. it’s always been attributed to my OCD. but I realize why I do it because I had to sit down on the floor in Walmart the other day picking up cat litter. It was an extra trip, I hadn’t planned on taking. & it was one trip too many. as much as it pains to to see you guys have tried things & it worked, only to have it stop working later, it also comforts me because again, it makes me feel less alone & less crazy. It’s hard to explain to people that yeah, I tried magnesium to help with the PVCs & it worked for about two weeks & they came back with a vengeance. I see a few people on here say they’re on a low sugar diet &I was wondering how that factors in with dysautonomia. I’ve never really been a big sweets eater but if I eat candy, I get the worst kind of stomach ache. It’s like a painful bloated, nausea. Baked goods are a little easier but they have to be homemade or from a bakery - like I can’t really eat Oreos or Girl Scout cookies. This could just be weird eating disorder things (they told me a lot of my food issues/stomach issues are) but I’m not totally convinced. Thank you again - so much.
  21. for whatever it’s worth, when I was hospitalized & trying to get my ferritin up, they used to give me vitamin C & iron supplements (oral) together. they said it helps enhance absorption. (It didn’t work for me, but I’m a weirdo) I know calcium blocks the absorption of iron.
  22. @KiminOrlando hi Kim, I haven’t seen a rheumatologist. my aunt was also concerned about MS because for whatever reason, the area I live in MS diagnosis is double the national average. I’ll have to see if I can get an appt with a rheumatologist (I honestly thought they only dealt with rheumatoid arthritis. shows you how not smart I am lol) if I may, how much testing did you have to go through to be diagnosed properly? Were you able to find treatment to help improve your symptoms? thanks for the suggestions, it’s been incredibly helpful.
  23. @Pistol yes, I can exercise & do. I ride my stationary bike (it says for 21 mins but I have to stop each mile for about a minute to catch my breath) I also do yoga & Pilates. Id really like to try rowing. I will admit, my symptoms have gotten worse over the last year, particularly the last six months. I do generally try to listen to my body but I am often guilty of pushing a little too hard. I realize that my original post was kind of doom & gloom, but I’m not always having symptoms that effect me so much it disrupts my life. Most of my symptoms are just things I’ve learned to live with & are just normal for me. I’ve just learned to do things a little differently & I feel like as long as I’m still upright & conscious, then so be it. I also want to make it clear I have been in recovery for the last seven years with only a few slips & lapses but no relapses. Most of my slips & lapses are because my stomach bothers me & it’s physically hard for me to eat, not my eating disorder thoughts. (I know that sounds weird to people who don’t have an eating disorder, just think of it as like an evil twin who points out ALL of your flaws 24/7 & exaggerates them to the extreme) The salt thing has been weird for me. I know I’m supposed to increase my salt intake but I never know if I’m actually getting the amount I need? I love salt, I crave it often. My sodium (bloodwork) is always one point away from being considered low (I think it’s 132 or something) & I don’t even know if bloodwork is the most accurate test for sodium. Thanks for the tips & encouragement! It is greatly appreciated
  24. @MomtoGiuliana I will definitely look into it. Thank you for the suggestions, I sincerely appreciate it. Any & all suggestions are welcomed.
  25. @whoami thank you for your kindness. please don’t ever think you’re complaining too much. sometimes it feels good to just get it all out. & I know that post I wrote made it sound bad, not all my days are bad. I do have some really good days & I’m grateful for every single one of them. @MomtoGiuliana hi, I don’t think any of my drs specialize in autonomic dysfunctions - both my primary care & cardiologist had heard of POTS but my primary care said “there’s very little known about it” (i love her though because she is a DO & literally treats the patient as a whole instead of just treats symptoms - she said she is willing to work with Dr. Blitshteyn if I can get a consult) & my cardiologist said she is no there equipped to diagnose for POTS but that the EP would know more. That’s why I am hoping & praying I can do a consult with Dr. Blitshteyn because she does specialize in autonomic dysfunction. As for deficiencies, I do take B12 (the sublingual) at the request of my primary care. I’m not sure about vitamin D but I live in buffalo, NY so I’d assume it’s low. (That’s the vitamin you get from sun, right?) I had basic blood work done a few weeks ago & it was all normal except my thyroid was off a little. My lymphocytes (I think?) were high but it must not have been a big deal because it wasn’t addressed. I do test ANA positive (& have for years) & I honestly don’t know if I’ve ever been tested for any of the major autoimmune disorders. Honestly, I stumbled across this site while doing my own research on POTS when my sister brought it up again a few weeks ago so I am still learning about how to be my own advocate & what tests & things I should be asking for. Thanks for the response, I really appreciate it.
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