Urkittenme

Members
  • Content count

    27
  • Joined

  • Last visited

Community Reputation

0 Neutral

About Urkittenme

  • Rank
    Member
  • Birthday 06/17/1992

Profile Information

  • Gender
    Female
  • Location
    CA
  1. @Buzzbev gosh I feel your frustration. That is exactly what I'm worried about. I can't believe it's been *this* hard for me to even get a referral to a cardiologist. @MomtoGiuliana do the specialists take patients without referrals? I don't think anyone is taking me seriously because I look so healthy. Ugh.
  2. Thanks for the summary. I got an event monitor that only records when I press *sigh* so much for figuring out what's going on, I'm sure all that will come up is normal rythymn tachy. Hoping that will be enough to get me to a cardiologist for am echo.
  3. Kalamazoo Do you have a doctor or team of doctors handling your care? It sounds like you're experiencing a lot of pain that isn't being taken seriously Did you have your levels tested during a ttt to determine hyperpots?
  4. I don't have anything very helpful to say other than I definitely experience this. It does not happen all the time, though, and I haven't been able to pinpoint a trigger (other than every time I drink alcohol) but I almost feel as if it comes in "waves" (a few days or a week..then goes away for weeks..) The only things I've found to be helpful are yoga and a heavy dose of benadryl. It definitely happened more often when I worked retail and got off late and had so much adrenaline that I couldn't get to that point of sleeping soundly before I had to be up in the morning. Sorry you're going through this. Doesn't help at all with the fatigue we already have to deal with. I hope it gets better for you.
  5. @haugr oh I missed your reply I'm sorry! I'm stressing a bit about having to press the button. It seems that my symptoms of dizziness, lightheadedness, pre-syncope, and palpitations are so frequent, pretty much every time I stand. The chest pain is way too frequent to press the button..and too minor, I think? I wish that my doctor would have started with a 24hr moniter, but I plan to voice these concerns when I go to the cardiology office. (I was pushed back until this Wednesday, so yay...more sitting around worrying.) My doctor believes I may have svt and I have no idea what this feels like, so hopefully the moniter will catch it on its own. I just know my chest feels wacky 100% of the time and I'm pretty sure they won't want me to hold that button down 100% of the time. Lol! @htberg bummer you didn't learn much from the heart moniter. I'm not sure I've ever had issues with bradycardia but it will be interesting to see what my lowest resting rate is when sleeping (or if I will be given that information)? Luckily the cardiology office informed me that I will be pre-paying so hopefully I don't get charged for extra button presses! I am thinking I may not press the button at all (if that is the type of moniter I recieve) and just keep a VERY detailed log of my activities and symptoms, so that when I review with my doctor, I can reference the diary. I don't want to be brushed off for pressing the button often because I have a feeling most of my chest pain is nothing to worry about. A heart rate in the 40s is very low, isn't it? Was your doctor worried at all about your results? Thank you for your input!! If anyone has ever requested the report, how detailed is it exactly? I'm assuming it's a one page report with highlights of any abnormalities? Does it include ecg of the abnormal parts (if you had any)? I'm thinking that I'll try experiments throughout the month. For example, maybe one day I'll have an extra cup of coffee or two (usually have one 8oz cup). Another day I'll have a glass of wine at night to see if that has any effect on my heart. I don't do much other than yoga but I'll do some cardio one day. Although, Saturday I climbed 4 flights of stairs, and boy did I pay that night (pounding heart & insomnia) and spent Sunday recovering! Unfortunately I am hoping the moniter shows SOMETHING other than sinus tachycardia so that I can get a referral to a cardiologist for an echo, perhaps a ttt from there..even if it's just for peace of mind! A couple hr moniter apps show mild arrythmia but I'm not sure how accurate those are.
  6. So sorry you're going through this. I don't have exactly the same issues, however I do get sensory overload from lights and smells, and when I worked in retail I would go home every day with a migraine. One thing that helped me get through the day was bringing along peppermint essential oil. I kept a small bottle in my pocket so I could take a whiff to get rid of awful lingering perfume smells, or put a bit on my temples for instant headache relief. Sorry I don't have more to add. I know it's stressful trying to manage your health on top of work. Hang in there!
  7. @statesof glad to hear your heart is healthy overall. It can be so difficult to know when we should worry with all the different symptoms we tend to experience. Hoping my issues are nothing to worry about as well. I just learned that tachycardia itself can cause cardiomyopathy which I find interesting as many of us are told pots isn't dangerous. I appreciate you getting back to me!
  8. @DizzyGirls thank you for the thoughtful response. I ended up having to stop the metoprolol I had been taking for about 3 weeks because I was having difficulty breathing, an extreme increase of constant chest pain, and overall breathlessness no matter what I was doing. My doctor says I have no signs of asthma so I can only assume it's mast cell related (many other symptoms). It's such a bummer because it helped my heart rate so much! I am SO glad your daughter doesn't experience any serious side effects from the beta blocker because of the mast cell issues, is this because of her mcad regimen? I am a homemaker for the time being, (will hopefully begin my pregnancy journey soon) so writing out my daily activities will just be somewhat daunting for 30 days. It's so silly that we HAVE to know as much (and in most cases, more) than the doctors treating. Thank God for this blessed forum and all of the helpful insight I have learned. Thanks for the well wishes. @statesof hi there, thanks for taking time to respond! I have scoured the internet for someone who has had the 30 day to get an insight. I really hope I don't have to press a button every time I have symptoms...because that would be every time I stand up, and ohh my gosh with all the water I drink I have to use the bathroom soo much..I'm definitely going to clarify with them if I need to write down my mild pains as well. As far as physical activity...lmao. "yes well, you see...I was watering my plants, some very strenuous stuff obviously, that's why my heart was 165+" hahaha. Did anything beneficial come from your report? My grandfather and uncle have a-fib, and both parents have had heart attacks in their 40's so I'm guessing this is just the first of many tests to come.
  9. Hi everyone, I saw a 2nd doctor on Monday, she's an absolute gem. I feel so lucky to have been paired up with her, I feel that we got along very well and she took me seriously! Even more exciting, she's HEARD OF pots/eds/mcad although she somewhat dismissed this based on no family history (my entire family has a multitude of health problems but no diagnosis of EDS) The first doctor I saw performed an ECG, my HR didn't seem to slow much, and my ecg showed: Sinus tachycardia Right atrial overload Probable myocardial infarct Right bundle branch block Cardiomyopathy My new doctor decided to perform her own ecg, and upon returning to the room she told me the results were normal (interesting..but I'll take it), and that she suspected svt (supraventricular tachycardia). She ordered a 30 day Holter moniter, which I will pick up on Monday at the local hospital's cardiology dept. She also noted while she was manually listening to my heart that she could hear my heart speed up with every breath, I'm assuming this is related to EDS. I'm curious if anyone has experience with a 30 day holter moniter?? All of the info I'm gathering online is about 24-48 hr monitoring, and the 30 day event moniter. It's my understanding that she has ordered the continuous moniter for 30 days. 30 days!! I know that my symptoms are related to standing up. Am I going to have to record every time I stand up and sit down for 30 days? My heart rate instantly goes up to 115-130 from the 70's and instantly drops when I sit. I have to take so many breaks throughout my day!! (It kinda reminds me of that parody song of stand up, drank [water]..anyone?? Here's the link if you need a laugh ) My other question is about chest pain. Do I record EVERY incident of chest pain, no matter how mild? I really think that most of my chest pain is because of the pots and not the heart issue(s). I explained that, usually, the pain is very mild [1-3 on pain scale] about 6-10x daily. After having to give this answer in her office I started paying close attention and it seems like the chest pain is all over the place. Throughout the day I'll have bouts of general left chest pain, specific left, general right, specific right, right with back pain, left with arm pain yadayadayada! Sometimes only a few seconds, but after exertion it lasts longer, no longer than a minute. Oh my gosh how am I going to write all of this down for 30 days? Is it necessary to write down every bout of pain? I write it all OFF in my mind so I think when I am wearing the moniter, I will be less inclined to record incidents because I don't want to overwhelm my doctor. I think I might fill up half a page just cooking dinner. Stand up. Turn on burner. Sit down. Get up to cook. Nausea. Crouch down on kitchen floor 1 min. Stand up continue cooking. Sit on couch. Back to cooking. Stretch. Cook. Sit. I'm also wondering if there will be someone checking the results periodically, or will my doctor get one lump sum of information at the end of 30 days? I can't imagine it taking 30 days for them to get the results they need. If you've had a 24-48 hour test and have any advice as to what I should expect, I would love to hear it. Also if you've had a 30 day holter OR event moniter, I would be so so great full if you could private message me about what your bill came out to! I am definitely not looking forward to the bill although I do have decent insurance. Stay salty, lovely potsies!
  10. Lily's suggestion just reminded me of my own tactic..I do the weirdest thing to fall asleep sometimes, but it works surprisingly well. I squeeze my eyelids shut super hard until they get tired, maybe 10-15 seconds? Then I relax the tension, and focus on imagining blackness. I try to imagine darker and darker blackness until I (usually) drift off. That was super weird to explain but oh well. Hopefully that makes sense. It usually does the trick. If not I resort to a benadryl or some tea.
  11. Angelloz- thank you so much, I am definitely trying to take it easy. It's such a relief to finally somewhat understand what is going on with my body. DizzyGirls- Hi there! I hope you and your girls are feeling well (relatively, of course..) thank you so much for telling me about Sudafed I will definitely try it!! As for EDS, I'm quite certain I have the hypermobility type. I hit all points on the Beighton scale minus one wrist that I have pain in. Apparently everybody's joints don't click clack?? Haha. Every joint pops when I stretch and I have to be careful how I move my shoulders. Other signs are translucent skin, bruising easily, scar easily, and most cuts get infected. The only testing I've had done so far is an ECG which shows my heart is enlarged, a right bundle branch block, and signs of a past heart attack (yikes, I'm 24). My brother also shows symptoms of pots and eds, and I definitely believe there is a genetic component in my case. I wouldn't be surprised to learn I have mcad, as I sometimes get hives immediately after consuming alcohol and certain foods (fruits mostly) make my mouth and throat itch like crazy. I also had shingles at a young age, I don't know if that's related. My parents always said I was a "bulimic baby" and I'm definitely nauseated all the time. Anywho. Sorry that was long. I swear I was just trying to thank you for your advice and well wishes
  12. Debbie Rose, I appreciate that you took the time to reply. It's so great that we have this outlet to talk to others who truly understand. It's hard to lose friends but I commend you for getting rid of those "friends" that didn't support you. Wishing you wellness!
  13. Momtoguiliana, I'm sorry to hear you've been sick! Definitely does not help in the slightest. I'm actually hoping I am sick, and that it's not a reaction to the beta blocker from mast cell activation (especially the increase in shortness of breath, holy cow!!) Which would make sense to me since I am definitely hypermobile with loose joints prone to dislocation and pulled muscles. I plan to discuss it all with the doctor, and hopefully not scare her away at the same time. Thanks for listening to me rant. I truly hate to complain but sometimes I gotta get it off my chest (even though I wish I could LITERALLY get it off my chest, haha.) I am thankful to be able to be home and not working. I hope to get this figured out soon as we would like to start a family.
  14. This has been my worst fear, hearing these words coming from my boyfriend. He knows I am trying to figure out what's wrong with me, and says he is glad I am doing so. We have been together for 7 years now. It's so frustrating, there is literally always SOMETHING wrong with me. I've always assumed I have a weak immune system. Strep throats, UTIs, multiple pink eyes, bartholin cysts, back pain, falling arches, catching a cold if I come within 100 feet of someone who has been around someone with a cold.. I'm a basket case usually. I've learned to stop complaining. Everything I deal with on a daily basis is invisible, what point is there to complain? The only thing he sees is me getting dizzy and lightheaded when I stand up because it usually stops me in my tracks. I guess he thinks I'm sitting all the time because, well, plain laziness. He works full time, makes enough for the both of us and I hadon't quit my job about a year and a half ago when we moved into a new rental (his dad's property, needs work.) This was based on the frequent bartholin cysts which were preventing me from working almost a week every few months. My retail management position wasn't very understanding. He has been mostly supportive, but when he said to me the other day "I'm beginning to think you're just lazy" (I hadnt done something he asked me to) it about broke me. He had such a long day at work and his boots were soaking wet, I know he was exhausted and took it out on me. He apologized later. I wish he knew how I felt. I wish he could understand what it's like having to take a break every time you do anything that requires minor exertion. I wish he knew how it felt to get exhausted getting up and going to the restroom. To have his heart rate jump to 165 picking up an object off the floor. I feel like I do a pretty good job of keeping the house in check, having dinner prepared, bills and whatnot. I try to suffer in silence but I just can't take it anymore. It's such a relief to see that so many people are feeling the way I feel, and I'm no longer going to let anyone tell me it's all in my head. So far, with family and friends (mom and dad especially, since they both have their own crazy health issues) the general concensus is "everybody has problems." IF ONLY THEY COULD FEEL WHAT I FEEL FOR ONE DAY. I'm having a particularly bad week with shortness of breath, brain fog (anyone want to know how many kitchen fires/ car accidents I've caused in my life?? Haha) and pre-syncope. The metoprolol seems to be keeping the heart rate at bay for a few hours but my SOB seems insane. On top of all this, I've had swollen lymph nodes in my throat and throat tightness for weeks now. Just can't seem to catch a break. Going to see a new pcp on Monday, armed with info from this blessing of a site. I've stalked through hundreds of pages in the forum now and I love and feel for you all.
  15. Hello, I experience this at times. What helps me most is a bedtime yoga routine that can be done laying in bed. Mainly hip opening exercises tend to be most useful when I am suffering. If I need to fall asleep quickly then I will cheat and take 2 benadryl and that will usually put me to sleep. What I have also found to be helpful is drawing a bath with essential oils, for restless legs I use lavender and rosemary. I also have a "nighttime aches and pains" bath oil blend of lavender, chamomile, and menthol. Sometimes this helps to relieve my symptoms. If you have a partner maybe you can ask for a leg massage when you are suffering? I hope you find something that works for you.