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hholmes13

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Everything posted by hholmes13

  1. That's so great that you're doing so well! I hope it continues to go well and get even better.
  2. Thanks for the ideas everyone! While I'm not excited about being diagosed with POTS and EDS, at least it confirms what I've suspected and gives me affirmation I'm not nuts! Looking forward now and going to try and stay positive and pull out of this bad spell. Now I know for sure what I've been fighting with for the past year and can hopefully start to improve again.
  3. When I had my gallbladder removed I broke out into hives every time I pushed the button on my morphine pump. I'm apparently allergic to it, but I didn't get any burning and luckily no respiratory reactions. My IV did infiltrate later that night and when they put the benadryl in it, it burned like crazy.
  4. I met with an awesome medical geneticist this morning. He was so kind and understanding. It was great to have someone take me seriously and really listen. He actually diagnosed me with EDS-Hypermobility (type III I think?). I scored a 9 of 9 on the Beighton scale. Even though EDS and POTS can't be cured or anything, it feels good to actually have a name for some of the stuff that's been going on with me. It's good because my blood work isn't showing any inflammation and my ANA was normal so it doesn't look to be anything autoimmune right now. Because the joint pain has really started to get bad over the past month and is affecting my life more he's actually going to have me start physical therapy to strengthen my muscles and protect my joints. I'm hoping that the exercise (if I can tolerate it) will maybe improve my circulation and hopefully help with this awful dizzy feeling as well. So even though I didn't get answers as to why I feel crappy with better bp and hr, I at least feel like I've got some confirmation as to what I'm really dealing with. Now if I can just get out of this awful flare and get back to feeling better...
  5. I finally got to see the neuro doc today. Big surprise, I've got POTS. It was funny because he seemed almost surprised at how different this 2nd TTT went. I was like seriously? Why on earth do you think I harassed you for a beta-blocker so much?? I couldn't stand having my hr jump up over 150 every time I walked up some stairs!! Anyway, it does feel nice to have an actual diagnosis even though I feel like I've known for quite awhile already. I'm actually seeing a medical geneticist tomorrow to talk about possible EDS or other connective tissue disorders. I've got quite a few of the symptoms (especially hypermobility) and have started having a lot of issues with joint pain. He told me to start taking Aleve and if that doesn't control the pain then we can send me to a rheumatologist. I think we may try to rule out any auto immune stuff as well. Hoping to maybe get some more answers. Only frustrating part of today's appointment...neuro doc had no suggestions for things to try to make me feel better. The tachycardia and syncope are pretty well controlled with the nadolol and midodrine. I'm also still drinking lots of fluids and salt loading. However, I am dizzy 24/7 unless I am laying down. (It doesn't go away sitting anymore.) It's making me so nauseous that I've lost 20 lbs in the past year. He is baffled as to why I feel just as light-headed with normal bp readings as I did when I was really hypotensive. (Reminds me of a thread that was just on here where we talked about bp readings not necessarily measuring perfusion to the brain.) He didn't really have any ideas for meds to fix being dizzy. So...here's the million dollar question: any one find anything that works for them to take away this awful dizzy/foggy feeling? (Meds or supplements...I'm open minded. )
  6. Yes I have it too and it drives me nuts! If I start feeling cold and the tips of my fingers turn white and my nail beds turn blue (so do my toes but they're usually covered). My lips also turn purple. I've also noticed that when I take my temp it usually reads around 97 or so. I almost never see it at 98.6. No matter how much I layer, I can't seem to stay warm. Just the other weekend, it was sunny and 75 outside and I had two long sleeved sweaters on and was drinking hot tea with my family and was still cold. I made my husband leave the flannel sheets on our bed all last summer (which he did not appreciate!) I joke that my thermostat is broken.
  7. Thanks for the thoughts! Well, I feel miserable now. I actually had to skip work today. I didn't pass out (it was only a 10 min ttt) but definitely felt symptomatic. My bp stayed pretty high for me through the whole time I was upright (around 130/96). At home I usually get readings of 110/70 standing and that's with meds. My heart felt like it was going to pound out of my chest. I think weird stuff was happening because the tech kept looking at the other one and seemed confused. Then at the end she had me raise my arm over my head and then did another bp reading and then shot a glance at the girl. After leaving I was so disoriented I thought I was going to throw up and had to sit down a few times just to get out of Mayo. I just hope something actually shows up this time. I have been so miserable the past 2 months, I really just want to get some answers and an official diagnosis!
  8. So I go tomorrow to get my autonomic screening done again. (I think it's a QSART, valsalva maneuver, and a short TTT). I really want my body to act as goofy as it has been lately and really show what is going on now! I think there's a good chance of it since I can't take my meds. I also stayed away from salt today and am planning on not eating or drinking anything before the test. Please send some POTsy thoughts my way so my body shows what happens when I'm home and I can finally get a proper diagnosis!! I know I won't be appreciating how I feel afterward if that happens, but I know it will make things better in the long run. On a related note...thankful that I thought to double check about medications and the test. The secretary that scheduled the appointment told me I should keep taking my meds for it. I thought that was strange since a beta blocker and midodrine will definitely alter the TTT results. Sure enough when the nurse checked with my doc today, he said I should skip the doses for tomorrow morning. I'm so glad I checked because it would've been a huge waste of time! That was a good reminder of how we really need to advocate for ourselves.
  9. Honestly I haven't noticed too much of a difference with anything. Although the thermotabs made my nausea way worse so now I try to get my salt through food and gatorade.
  10. I've never had issues with tremors. I did have extreme fatigue at first from it, but it seemed to get better. I never upped my dose to the full 20mg/day because it already makes my resting hr get down to 40 at times. I figured that was low enough! I am really fatigued all the time again now, but I attribute that more to my symptoms flaring rather than the medicine. I hope it works for you. Good luck!
  11. I've got the same thing. My vitals usually don't reflect how I feel. I've come to be pretty much dizzy/light-headed 24/7 lately. My bp has been really normal (around 110/70 - which is higher for me) lately. My hr jumps around a little but usually things read fine and I still feel terrible. I'm wondering if it's a volume issue as well. I try to eat around 2g of sodium each day and take in 2-3 liters of fluid but I don't really notice much difference. I definitely notice when bp is too low....that feels worse, but even with normal readings I don't necessarily feel a whole lot better.
  12. I've been on it for almost a year now. I've stuck with a dose of 10mg once a day. The first week or so I felt like a zombie and could barely get up I was so tired. It definitely helped with my tachycardia right away. The bad side effects wore off after about a week. I still have a lot of other symptoms but at least during the day I can walk up the stairs in my home without getting a hr of 150!
  13. So sorry you're going through this with your family/friends! This illness is tough enough without taking flack from those that are supposed to be close to you. Just wanted to let you know I'm sending positive thoughts your way. I hope things get better soon! Heather
  14. That is so cool! I have always wanted a big bearded dragon. I think they are soo cute!! I love his name too.
  15. Such a fun collection of symptoms we get! It's strange because I never really used to experience this. Oh well at least it's not dangerous, just annoying.
  16. So things have been progressively getting more frustrating over the last 5-6 weeks. I've started getting short of breath often, even when I'm just sitting down. I've noticed it happens a lot when I'm eating/drinking. I try to eat slowly and eat small meals. I also keep getting these feelings where I feel surges of something...it makes me feel almost shaky and as if my hr is high. I'll check my vitals and things are usually pretty normal. I'm wondering what on earth could be causing this. I'm not anxious at the times it happens. I can be sitting down relaxing and all of a sudden I feel like I'm on edge and shaky and short of breath. Any ideas of what this could be?
  17. I've got an Omron upper arm cuff as well. It seems to work relatively well but I also have issues with getting error messages when I'm standing. I've wondered if my bp was dropping and it couldn't keep up. I was trying to do a poor man's tilt the other week and after about 5 minutes of standing my hr was around 150 and my bp was like 95/50. I started feeling really nauseous and dizzy and kept getting error messages. I had to stop the test and run to the bathroom because I thought I was going to be sick. I was annoyed because I wanted to see what was happening with my bp/hr! I've also gotten the message where it said it detected an abnormal heart rhythm. I'm wondering what that was too...
  18. Thanks for the input ladies. Glad I'm not the only one! Thanks, Jen. It was freaky. I was just glad it went away. I've been feeling some more palpitations than usual again but no more crazy bp spikes. I finally heard back from the doctor's office today. I had been calling for over a week trying to find out if I could get an appointment since I've been on a really rough patch for the past month. My neuro doc is having me do the autonomic screens again but this time with my meds and then I'll see him afterward. Unfortunately, I can't get in for 3 weeks but oh well. I'm worried the screening is going to be a bit of a waste of time. I guess we'll see what happens!
  19. Wow good for her! Haha even before this stuff came on and I was in great shape I don't know if I could've done something like that. Amazing!
  20. So I had a weird experience today. I've been on the same meds for almost a year now (midodrine 10mg 2-3x a day and Nadolol 10mg/day) and have never had this happen before. I got home and was trying to sit down and rest because I was exhausted. All of a sudden I got really short of breath and felt like my heart was pounding out of my chest. I assumed I was getting really tachy so I checked my bp/hr with my cuff. My hr was 40 and my bp was like 149/89. My normal bp is around 100/60. I've never seen it get that high before. And I usually thought when people got surges where their bp spiked, their hr usually increased too. This lasted for like an hour and was starting to weird me out...then it slowly went away. My bp is back down to normal and my hr is back to around 52. Has anyone ever had anything like this happen before? Any input would be much appreciated! Thanks! Heather
  21. Jen, So sorry you're going through this! It's tough to deal with even when it's expected. I don't like to admit that I can't do something, and it's so frustrating to realize how limiting this illness can be. It sounds like you've been going through an especially horrible patch...I hope things look up for you soon. Sending positive vibes your way!! Heather
  22. Thanks for the responses! I don't think my boss is planning on firing me. He's been really awesome to me for the last 5 1/2 years I've worked for him. I'm worried about pushing too hard also...but hopefully he'll if I do "crash" he'll understand. I'm still waiting to hear from my doc to see if I get an appointment. I want to try to find some kind of cause for this stuff so I can maybe treat it more effectively. Your situation sounds tough too Anoj. Hopefully yours works out well also.
  23. So I've posted recently about how things have been going downhill lately in terms of symptoms for me. I've been working full time since I went off STD last summer. Even though I had improved I was definitely not functioning at 100%. Luckily my job hasn't been too intense so I was able to take it easier and take my time getting things done. On the bad days I would scale back or head out early. On really bad days I would stay home since I know pushing too much makes me pay for it for days. Fast forward to the past few months...funding in our lab is in rough shape. We're doing more work with less personnel and I've been struggling to keep up. Well my boss called me into his office yesterday and had a talk with me about how things are going and how he can tell I'm not functioning at a normal level. He told me others have mentioned they can tell I'm not the same. He also said things have been "slipping through the cracks". He's now checking in with me each day and expecting all these things to get done. He knows I'm trying to get my doc to respond to me and maybe give me an appointment. He also knows I'm feeling awful. He was nice about the whole thing but it still made me feel horrible. I've been so frustrated lately I ended up crying while we were talking. Basically he was like you need to get this addressed by a doctor but now I'm expected to keep up with all this extra stuff. I pushed through everything today and am paying for it already. I fell asleep as soon as I got home. My nausea has been so bad that I've hardly eaten in the last 4 days. I let our employee health services know what's going on but they just said to tell them if I need to reduce my FTE. Well I definitely can't do my job right but we really can't afford to have me cut back. (Hubby already cut back because he's in school full time.) Even if I could it would really mess up things in my lab. It's not an option now. I've been trying to get a hold of my doctor for almost a week now and keep getting blown off. I'm just scared as to what to do next. I don't really have a choice but to suck it up at work and push through but I'm afraid of what kind of crash I'm in for if this keeps up too long. I'm also worried if I can't find some relief for this stuff or if it gets worse...I don't know what we'd do. Sorry this was so long. It's just been a rough few days. Thanks for listening if you made it this far. Heather
  24. Hi Sonyasmith12, I'm on Nadolol too. When I first started it, I was the same way. I was so tired, I could barely function. It did get easier after about a week. I was supposed to go up to 20mg but just 10mg seemed to work fine. It lowers my resting hr to about 45 and that seemed low enough. I didn't want to bring it down in the 30's. I was just so excited to have something control the tachycardia. Glad to hear that cutting the dosage in half is working for you! Good luck with everything! Heather
  25. I wasn't sure how to answer the poll questions so I thought I'd post down here. My symptoms literally came on overnight. At the time, I was training for a half marathon and working out 5-6 days a week. I did have a weird spell of dizziness/nausea a year before my symptoms come on that lasted for 2 weeks then subsided. I had also had occasional syncope in my teen years. Anyway, last April 4th was when it really started. I woke up in the middle of the night so dizzy that I threw up every 15 minutes for about 5 hours. I could barely walk between the bathroom and couch. After that it just continued to progress. I started fainting and having pre-syncope episodes. I had constant nausea and could barely eat. I was completely exhausted no matter how much I slept. Over the course of the next month or so, I started getting chest pain/palpitations. A few weeks later I started getting tachycardia that would only go away with lying down. I have no clue what brought this on. I've always been prone to fainting/dizzy spells, but I would feel sick and then after a few hours recover. Thinking back I did donate blood about 6 weeks before my symptoms came on (almost fainted during that!)...wonder if that pushed me over the edge? I'm just still completely baffled how I could go from in great shape and totally healthy to where I went overnight. I didn't have any viruses or anything near that time. Heather
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