Davidinaz Posted May 8, 2017 Report Share Posted May 8, 2017 Hello I recently was diagnosed with autonomic dysfunction it sounds like pots from what I read here I get fluctuations of heart rate from 69 to 90 while resting Standing my heart goes anywhere from 110 to 150 Is this normal for you guys as well, I feel horrible like my life is falling apart. Can't take beta blockers because make heart rate to low. Just can't function well has anyone gotten on ssi benefits for this? And is your heart rate always bouncing too? My doctor says it won't kill me but it is really scary I am 47 yr old male had surgery in December they think that is where it came from. Quote Link to comment Share on other sites More sharing options...
Weyland Posted May 8, 2017 Report Share Posted May 8, 2017 My hr is 70-80 at rest and goes up to 150 standing . Pots is a terrible thing . I havent been able to take beta blockers either, lowers my bp too much. I need to look into ssi also . Are you in Arizona ? Where are you being treated ? Quote Link to comment Share on other sites More sharing options...
Davidinaz Posted May 8, 2017 Author Report Share Posted May 8, 2017 Nowhere yet cardiologist did EKG, stress test, ct with iodine, electrocardiogram, holter monitor for 14 days all good just pvc' s and pac's said they were Benin Heart rate went up to 125 while standing said I had autonomic dysfunction gave me paxil and sent me home. Quote Link to comment Share on other sites More sharing options...
Weyland Posted May 8, 2017 Report Share Posted May 8, 2017 I'm in AZ also ,sent you a pm. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted May 8, 2017 Report Share Posted May 8, 2017 Hey. Don't have time to give you a full answer in getting disability, but short answer, you are going to need a lawyer most likely. Use the search function to look up this issue and read what has already been posted. If you have more questions, we will do our best to help. Your doctor needs to give you an actual diagnosis. You would be surprised when your records are pulled that many doctors won't give a dysautonomia diagnosis. Do you know what your medical coding is? Some doctors won't even do a Tilt Table Test for you to have metrics to show Social Security. Maybe your docs did. I don't know what you guys have to work with. Read up on here, see if you can get copies from your docs, then hit us with questions. If you have private disability insurance, they may assist with attorney fees. Good luck! Kim Quote Link to comment Share on other sites More sharing options...
Davidinaz Posted May 8, 2017 Author Report Share Posted May 8, 2017 Tell me Kim does your heart rate fluctuate even at rest and do you get blood pressure fluctuations as well Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted May 8, 2017 Report Share Posted May 8, 2017 Yes. My resting can dip to 49, but my O2 takes a dive when that happens, and can go up to around 103. I tend to pass out in the 150s. I don't really check my BP much at rest any more because my problem is standing. That is a good question. I'm a big mess. I have autoimmune diseases that aided in my Social Security Disability claim, and I passed out at various doctor appointments which were all documented and it was STILL a very hard fought battle. And they have a clock ticking on you from your last day of work until you win. Check out some articles on this site about it. I got SO lucky because I didn't know any of this and it was before I found this site. I got denied multiple times with an attorney, but I think other people's claims went more smoothly. Life like this is a big adjustment. For some people it is a temporary condition, so you may be one of the lucky ones. Kim Quote Link to comment Share on other sites More sharing options...
Davidinaz Posted May 9, 2017 Author Report Share Posted May 9, 2017 How long have you had this? Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted May 9, 2017 Report Share Posted May 9, 2017 I got it when I was 13. I'm turning 47 in a couple of weeks. I was WAY more functional when it first happened and I was a very active teenager, so it wasn't deconditioning. Once I started working and going to college, I had less time spent being active and things got worse. Once I got a desk job, things quickly spiraled out of control. I think I was told most people recover after about 3 years. Mine keeps getting progressively worse so they called it Pure Autonomic Failure instead of just POTS. There are all different types and to be honest, my diagnosis keeps 'evolving'. I hope yours ends up being the short term version. I missed out on a lot of things 'normal' people get to do because of this illness. Kim Quote Link to comment Share on other sites More sharing options...
corina Posted May 9, 2017 Report Share Posted May 9, 2017 Welcome Davidinaz! I'm on Paxil too, not that I'm anxious at ll but it does help with my POTS. Keeps hr kind of in control and helps against my body overreacting! Hope it will help you too! Quote Link to comment Share on other sites More sharing options...
Davidinaz Posted May 10, 2017 Author Report Share Posted May 10, 2017 I guess it somewhat helps at least cuts the edge off of being stressed about my symptoms Quote Link to comment Share on other sites More sharing options...
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