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castronovo112587

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Everything posted by castronovo112587

  1. And just to add I do not have asthma or any lung problem so that's not why propranolol was having me these symptoms I only ever seen a pulmonologist while on this med.
  2. Propranolol was not a good drug for me. I could not breathe on it I kept getting coughing attacks and waking up in the middle of the night short of breath with my heart racing as my pulmonologist said beta blockers are known to contract the vessels in your lungs. It made me more out of breath and all my symptoms worse and gave me this constant burning feeling in my chest. It is also a pain to ween off of I was on it for about 2months and took me 6 weeks to wean off as it has to be done slow as your bp and heart rate can sky rocket (my bp did to 160/110 and heart rate wacky. Glad it helps some people but it was nothing but misery for me.
  3. Anyone else get headaches that will hurt their whole head and face and teeth as well and neck. My headaches will sometimes be one sided and sometimes not and sometimes my face near my cheeks and teeth will hurt. It's so hard to tell if its migraines or sinuses or what it is. And the headaches will often fluctuate greatly in intensity throughout the day.
  4. Yes any idea that doesn't involve meds is a plus as i am not a big fan of meds I like to look for more natural ways to combat symptoms if possible.
  5. I think that is a very interesting idea. I too do not notice my symptoms as much if I have a lot of distraction that day (unless it is a reallyyyy bad day) and I do think that something like that could help and is worth a try. I mean why not? with all the meds that everyone takes this is something simple to try without crazy unwanted side effects
  6. Yeah I haven't researched it as much from a pots stand point but know it helps with diarrhea and flushing from the carcinoid standpoint. It didn't do anything to lower my heartrate and didn't affect my blood pressure at all either way. Like SarahA33 they use it alot when trying to detect and treat neuroendocrine tumors, which is what carcinoid is. Hope you get in touch with a doctor that can try it out for you.
  7. Hello I am not in the NY area but have taken octreotide before but for carcinoid. It helps with diarrhea and flushing. Do not believe it would do anything for tachycardia or blood pressure but it should help abdominal issues. From my understanding it's a relatively safe medicine and the best place to go to see about taking it would be some sort of dysautonomia specialist or an oncologist/hematologist. Maybe have your current doctor write a referral to a oncologist? As they often prescribe octreotide for cancer patients.
  8. I'm 25 and yes I am lucky enough to live about an hr away from the Jacksonville one
  9. Yes I thought it was unusual. He never had to do a diagnosis for pots before so I guess he didn't know the proper way lol
  10. I get numbness and tingling on and off in random spots.Not sure of the cause
  11. He said was going to dictate a report saying borderine pots
  12. No blood and no IV fluids. They must seemed to not know how to do it for pots. Thanks all.
  13. Thanks Chaos. Hopefully between that and a letter from my carcinoid specialist I should be good. He is the one who suggested to me that I have pots.
  14. Thank you Chaos, yes I definitely have good days and bad days. 2 days ago my heartrate was in the 130s while standing the whole time. The cardiologist who I seen definitely does not know much about POTS at all. He was there during the test. I am definitely going to go to mayo clinic I just figured if I waited I would be able to present them with these tilt table results and have a better chance of getting in. There are days where my blood pressure is extra low (gone to 80/50) and my heart rate extra high and it seems like those days I'm like that all day no matter what I do to help and then other days my bp will be great 120/80 and heartrate not as bad. But yes I definitely do have all the symptoms like flushing, diarrhea, palpitations, sensitivites, chest pain, bladder abnormalities, dizzyness and sweating when standing for a while and so many more. The cardiologist does believe I have some sort of autonomic dysfunction and he said he rarely orders tilt table tests and hasn't dealt with pots patients. My old cardiologist refused to even do a tilt table which is why I went with this guy. I will be calling mayo next week.
  15. I don't take any meds so I'm puzzled I know it's definitely not normal to have your heart rate raise that high from standing. All my friends and family heart rate doesn't goes up 10 beats or less when standing. Does heart rare have to be sustained for it to be pots or does the initial 40beat increase mean I have it even when it dropped it would still hover around the 25-30 beat range. I did not faint. Test made me dizzy, warm and gave me a headache and heavy feeling in chest.
  16. I don't take any meds so I'm puzzled I know it's definitely not normal to have your heart rate raise that high from standing. All my friends and family heart rate doesn't goes up 10 beats or less when standing. Does heart rare have to be sustained for it to be pots or does the initial 40beat increase mean I have it even when it dropped it would still hover around the 25-30 beat range. I did not faint. Test made me dizzy, warm and gave me a headache and heavy feeling in chest.
  17. Have had MRI and mra of brain and spine. In the past as a child they picked up on slight chiari malformation which has corrected itself over time. The only other thing was that apparently I have some sort of nominally I was born with where the circle of Willis gets all of its blood supply from one major artery instead of 2 smaller ones which showed up on both MRIs I had years apart as it is somthing I was born with
  18. Thanks guys confused about my results I posted a topic about it today. Didn't faint, got dizzy and warm and a headache
  19. Had tilt table test today and I am now allll the way confused. So my resting heart rate while laying there about 20 min was 70-75. Once they tilted me to the upright position my heart rate instantly jumped up to about 116-118 within 10seconds. However afterward it dropped, not to normal level but it dropped to about the 90s to maybe 105 and kept fluctuating from then on somtimes dipping back into high 80s for a second but basically hovered around high 90s to 100 and then after 10 minutes I got lowered down and it went back down to 70s lifted again and instantly 110 but did the same thing again dropped down to high 90s to 100. Confused because is this pots or not since it wasn't a sustained heartrate? So confused because I have every symptom of pots down to the pupillary dysfunction and bladder issues. My blood pressure was 115/73 laying down and upon first tilt went up to 140/90 immediately but then stabled out and didn't change much after. The tilt was done 3 times and for 10 min each time and each one same thing initial 40beat rise immediately and then a drop and fluctuating heartrate.
  20. Thanks everyone for your helpful info. Yes there is a mayo clinic an hr away from me in Jacksonville. I am lucky to live close to one
  21. Thanks lulu soccer. Yeah my heart rate instantly jumps 40 beats within 5 seconds of standing lol so I hope it will only be 10 minutes
  22. I'm not understanding why they would try to get you to faint because I thought pots was diagnosed on a 40beat increase in heart rate upon standing by 10minutes or sustained at 120. I can see them wanting to provoke fainting if you are known to faint but if you never have fainted before shouldn't they just stop the test after the first 10 minutes?
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