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Everything posted by Brye

  1. I had my low HR's before I started the BB but when they did start it I was in the hospital on a heart monitor 24 hours a day. I would be careful too about starting with a HR that low when up walking around. Brye
  2. Toll Booth job ... really? HA, You''re not going to relocate for the perfect job in a toll booth? Mine took about 4 months for the approval. Must vary by state. I live in AR. Brye
  3. Sorry, hope the 2nd round will do it for you. Hopefully the disability lawyer can give you some good advice. I was approved based on POTS but I also have a fainting problem because if it. Good luck to all of you struggling with this! Brye
  4. I had brady and tach rhythms since being diagnosed. I had a pacemaker put in recently for rates in the 30's. I take atenolol which controls my tachy rhythms pretty well but was dropping my HR too low. Brye
  5. The papers I submitted that I had the doctor filled out had high risk for syncope written in numerous spots. That's the reason the doctor wouldn't write me a return to work clearance. Liability to let a fainter go back to work apparently. My main diagnosis is POTS. Brye
  6. That is so true, it's like a new normal that's never normal. It's so hard to figure out what not to worry about and what you need to see a doctor for. I feel blessed to have a doctor who has been helpful in treating my POTS. I Always better to err on the side of caution and see a doctor if you're worried about it. Glad she's recovered. Brye
  7. Not something I would ask the nurse (if it is a nurse) to do on an initial vital check for someone with strep symptoms. Maybe they would check if there were increased fainting or dizziness. I would hold off and discuss my concerns with the doctor so he/she could decide what vitals he needs. That's the person who's making the diagnosis and decides what data they need. I guess though it would depend on if you're confident the doctor your seeing will do a complete and thorough exam. A doctor has checked my sitting/standing vitals, never a nurse/tech when checking in. That's just what I would do. I've been sick before and it does definitely exacerbate the POTS so I would expect a faster HR. The treatment for strep is the same though whether my POTS is exacerbated or not. Oh, and as others have said a lot of times it is a tech/cna. Have they even been trained in orthostatic vitals. If you wait til you get to see the doctor the doctor may check or at least maybe a RN. Anyway. Hope all is better and she's on the road to recover. Brye
  8. Normally if sitting/standing BP/HR is needed it is requested by the doctor. For a patient presenting with symptoms of strep it would not be a part of the nurses initial evaluation for most patients. Brye
  9. I had that problem, they checked everything and finally the infectious disease doctor diagnosed mono. I was so thankful that was all it was! Brye
  10. My BP runs really low from my BB. I take atenolol, I've weaned off it as much as I can while still getting some HR control. I also take florinef to help support my BP and midodrine 3 times a day to help keep my BP high enough so I can take the BB. Brye
  11. Congrats! I've been attending a cardiac rehab maintenance class and that has been so helpful. I've been going over a year. It is a little discouraging when the average age is about 75 but they have all been really nice! Keep working at it, well worth it!! Brye
  12. I play the saxaphone and have similar problems. I have to sit for sure and don't have enough breath to hold the notes!! Brye
  13. I think it's up the the individual cardiologist.. My 1st echo my EF was 30%. I had a repeat that was a lot better in the 50's. They did one more after that because I was having some symptoms that had gotten worse and it was normal. I would think if you are getting worse they would consider another one. 55% is low end of normal but if you're feeling worse I would think they would re-check one. I would think maybe a stress test would be helpful if you're having trouble with activity. Brye
  14. My cardiologist filled out a form I gave him. I had a friend who is a lawyer write it up for me. He called it a Medical Source Statement - Physical. He had questions for the doctor to answer ... Ex "What the patient can do despite his/her impairment" and then it has options to check for him. "On average how often do you anticipate that your patients impairments of treatment would cause the pt to be absent from work" Then it gives him choices to check. He filled that out for me. I can snail mail a copy if you want to take a look at it. PM me your address. Not sure how much of a hurry you're in though, I live in Arkansas, may take up to a week depending on where you live. Brye
  15. I'm content with my plain old POTS diagnosis. I've never seen an autonomic specialist specifically. My primary doctor and my cardiologist have been helping with symptom control. I don't feel I need to dig deeper at this point. If my symptoms get worse I would be more inclined to want more details I guess. I have had enough pin cushion time and am content with just POTS!! Brye
  16. The whole not enough blood to the brain sums it up for me. I call it my anoxic brain moments! Does it cause memory problems, you may want to include that? Near fainting moments when you stand up? "I suffer from daily nausea that makes it impossible to function at work as well as causing frequent absences." My lawyer told me frequent absences and a sitting/standing total # of hours that is less than 8 hours is one of the things they look at. Hope that made sense. So if you can give causes for frequent missed days that's apparently helpful? You could mention the excessive fatigue it causes? Just some thoughts. Hope it goes well for you!! Brye
  17. So tough. I had an implanted loop recorder for almost 3 years before deciding on the pacemaker. Good to do the 30 day event monitor for sure. Hopefully those results will make it more clear for you. I have had mine in 3 months and I have noticed so far my ankle swelling has almost resolved and I dont' have any CP sitting around the house anymore. Still too early to tell if it's going to help with other symptoms yet. I had a stretch of bedrest due to a blood clot after surgery and I'm still trying to recover from that. I know POTS isn't caused by deconditioning but for me I regress quickly if I don't get up and move each day. Hope you find a clear answer soon! Brye
  18. It is that time of the year when all the runs are happening. Seems like there's one every weekend. I'm a little jealous. I have my own accomplishments though and I occasionally post them on my FB. I did the heart walk a couple weeks ago. I figured I could keep up with that one! Summers are hard for me. I can't take the heat and have to turn down lots of fun activities. I've decided this year to have an every other week yard day. I'm inviting all our friends over, kids can play in the yard, I can hang out with friends in the comfort of the shaded porch and air conditioning. That's all I've come up with so far for summer survival. Few more weeks of school left and then it begins! Welcome to the group! Brye
  19. Mine had dropped to 11. That supplement made a big difference in my energy level. I can tell when it's running low. Hope it helps. That's great news. I remember a couple years ago being thrilled I had mono. What a relief to know I may not be doomed to a life of such excessive fatigue!! Brye
  20. I am an RN. I applied for disability 3 years ago, I think I was able to apply in less than a year. Maybe it varies from state to state? I would apply as soon as possible. They do reimburse you from the date they determine your disability kicked in. For me the date was the last day I worked. Brye
  21. Sorry, I understand your frustration. It's so hard with kids to keep up. I also understand the guilt when you can't make their games or play in the yard with them. My oldest 2 are 9 and 8 and it's so hard to explain to them why!! I was approved for disability several years ago. That extra money has been so helpful with medical bills. That money however also goes toward my house cleaner who comes every other week and extra child care/programs for my kids so they can get out some of their energy and socialize with other kids. I feel like I did get the pacemaker that was best for me. I'm not pacer dependant and don't really need it to slow down my rates since the meds have been working. If my pacemaker does stop working fortunately my heart will take over until I can get in to see a doctor so not sure all those daily checks would be necessary for me. Hope you find something that helps soon! Hang in there. I feel your frustration. I'm the eternal optomist and really try to remind myself all I have to be thankful for. That tends to get me through some of my rougher times!! Take care, happy to answer any questions you may have best I can but I think I've shared it all now! Brye
  22. Bella Mia is so right. Everyones situation is different. My pacemaker was placed to control my bradycardia. My low rate is set at 60. I got the MRI compatible one. I don't have a high rate setting. My high rates are pretty well controlled with my atenolol. My problem was without my atenolol my heart would race, with my atenolol it would drop in the 30's. My syncope was from the tachycardia but now I think is more from the hypotension. The pacemaker won't necesarily help that unfortunately. My hope is it may help with my lightheaded moments and give me a little more energy. It will make adjusting my atenolol doses easier as well. Such a tough decision. I agonized over this one for a long time. I had 3 cardiologists recommend a pacemaker at various times. Hopefully it will help. I figure if there's any chance at all of it helping it's worth a try. I have 4 kids to keep up with. Good luck with your decision! Hope your cardiologist can give you some good advice. I was thankful to have a very thorough cardiologist who agonized over the decision as much as I did. Brye
  23. I'm typing one handed, sick child in the other ,,, pardon errors please. I had one placed about a month ago. It's really too soon to kno if it's going to make a big difference. I developed a blood clot in my leg and have been on bedrest so really haven't had a chance to be active with it. I did notice the resting chest pain i had has resolved. I also noticed my ankles have never been skinnier. I normally have swollen ankles. 'i figure that has to be a good sign.. My Hr was dropping into yhe 30's durung some of my most light headed moments. It was a decision i had been putting off for years hopin med adjustments would help. Brye
  24. Hope you have a safe move and enjoy your new location. I miss living up north, I'm a WI girl!! Love it there. Good luck finding a good doctor!! Brye
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