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Everything posted by MikeO

  1. @PistolI can watch the birds for hours on end. My fondest encounter was with a hummingbird. One day it was raining fairly steady and a hummingbird was hanging out on the feeder. Another one flew up and tried to pull the poor little one off the feeder (was a sight to see) well the little one became exhausted resisting and fell to the ground. So i ran outside and it let me pick it up and set it onto a tree. It was Assume!
  2. Beta-blockers have there intended uses as Dr Raj mentioned. I know from personal experience that i.e. taking 100 mg of metoprolol intensifies my symptoms to the 10x power vs only taking 50 mg and having manageable symptoms. the beta-blockers are also good at limiting how high most folks hr's will go up to. the last three stress tests that i have done was while on metoprolol and i came up just short of my target hr so we are good that i am on the right dosage of the drug.
  3. Been a while since i have seen one of these.
  4. I would send the Cardiologist and have them clarify any questions that you may have. I do have a Lipomatous hypertrophy of the interatrial septum that is noted each time i have an echo done on my heart, it never gets mentioned when i get the results and as usual i do send a message inquiring about. The Cardio team has always responded.
  5. Thanks for the support @PistolI really don't understand what is going on. Even with the med changes that were done not too long ago they should have made a change with in a few weeks. I went from the 170's that persisted the whole time down to 115/80 (best i could get today) in a couple of days. i should be asstastic about that but for me is problematic and is causing more symptoms when standing just sucks but, i have been here before. I am not sure what i have done different to help the lower bp's only thing i have done recently was cleaned the house and added oregano (and no not the good stuff Lol) to my turkey and tomato sandwich. For now Tania's #3 rule comes into play (wait 30 secs before moving after standing) and yes @edriscollI run into door jams when this happens as well. As you suggested i will record my symptoms while being monitored. I do plan on reaching out to Tania once all the changes and data has been collected.
  6. Thanks @cmep37I am chomping at the bit to get this done. As of just recently i started whooshing again (bad omen) and have been getting very lightheaded when standing. My bp highs at home have only hit 135/88. I am known to have my blood pressure drop 40-50 points when standing. Just hope i am not going into a flare up.
  7. @RecipeForDisasterThanks for bringing this up. I did google sarcoidodosis and the skin rashes look eerily familiar. @toomanyproblemsgood call on the request a test i did find one fairly close to where i live.
  8. Had this conversation with my PCP recently and he agreed that my allergies have aggravated my nOH. We did also talk about the rough go i have with the ACE and ARB drugs. He is onboard that i had an immune response to the ACE at least just by my symptoms. He thinks i was releasing histamine and got the double whammy from the bradykinin which will also acts as a vasodilator. I personally suspect that the combination of the beta-blocker + ACE + allergy flare sparked a MCAS activation. @MTRJ75Any exercise that you can tolerate is better than becoming deconditioned.
  9. @BirdladyI am sure with a ejection fraction of 55% you are ok. Get your mojo on you can improve it
  10. So i was hoping that the recent uptick in hot flashes may have been aggravated by my recent med changes but i am not on board with that. I have inquired about them when i first joined the forum as i have been having them for years. even queued in to some self help relief which works. With @Pistol I did joke with being male menopause Haha. I know others go thru this as well but it seems to be getting out of hand dang it. @Pistolcan we get this on the list to discuss with the DR's?
  11. I did look up my past echo's not sure what the LAVi means. I did see references that looked close but can't figure out what the results are. i did recently have a stress test the notable items were Left ventricular ejection fraction (LVEF) post stress attenuation corrected is 62% and is visually normal without regional wall motion abnormalities. The post-stress left ventricular end systolic volume (ESV) is 29 mL. Did you have a good LVEF number? If your Doc is ok with it i would get exercising it will help with heart issues and only help in the long run.
  12. @edriscollyou are absolutely correct there are two sides to this discussion and not everything can be blamed on dysautonomia. What i react to is as @Pistolmentioned is when the healthcare professionals do not listen or react to what they should be. Like you i have had a serious issue that came up in 2017. I had a stress test that was high risk and my PCP did not take it seriously and would not refer me to a cardiologist I have seen these dismissals numerous times with other PCP. Might be because i would complain about so many issues it just overwhelms them. Instead She wanted to put me on an antidepressant. So i did the next best thing and called in to get my test results (that was so i could talk to a RN) The nurse took it seriously and had the oncall DR do the referral. I ended up needing a CABG 4 bypass.. I will almost guarantee most of the PCP in the health system that i am stuck in are totally clueless about dysautonomia or even POTS so even having this conversation would not have gone anywhere. And to be honest i did not know what dysautonomia was until the beginning of this year. I am thankful that when i reached out to UWM i got a DR that does her job and could sift thru my issues and get me the help i needed. She did get my PCP up to speed (he even acknowledged that i am unique) and is now aware what nOH is and that there are components that fall under dysautonomia. She also helped with getting my PVD diagnosed as it was also being dismissed and at least i am getting help with that as well. And she did reach out to my Cardiologist and he has made changes to meds that have helped greatly. I do have to say sorting thru serious issues vs a dysautonomia symptom and even a normal age related ache and pain for me is difficult. But as I learn thru your organization this is getting easier.
  13. @pistol I agree it is not a show stopper for sure.
  14. This has to be the worst part of my journey in trying to find help. I have been tossed around to numerous Doctors and at best one would just attempt to treat one or two symptoms and then just give up. I do feel blessed that i drew the girl that i did at UWM Madison she went the extra mile for sure. we did go over symptoms and i just unloaded all of them (there are many) she took them seriously. She also went into my chart and looked at all the data i have accumulated over the years (no other doc has ever done that) and concluded the finding of nOH. What really has helped is she agreed that i have some components that fall under dysautonomia and even spoke with my GP and Cardiologist. Since then i have made some progress.
  15. @KnellieI don't know for sure if a lower dose would help but i would ask your Dr to trial it and see what you get. You can always go back. My Daughter is suspected of having POTS and was put on a low dose beta-blocker. I have also read that not all beta-blockers are equally effective. I have tried a few of them and none of them have prevented palpitations 100% of the time especially during a flare. I did have good luck with Metoprolol Succinate extended release but it would not last the entire 24hrs so timing in taking was helpful to reduce symptoms. Recently i was switched to Carvelidol like @Pistolis taking. My only complaint is that i have to take it twice daily and there are times when i feel stronger contractions of the heart even though i have a normal hr when they happen.
  16. I have had Transient ischemic dilatation of the left ventricle but that ia a different animal. I would think that your Dr is saying that the echo looks good based on other parts of the test being normal. I know high blood pressure, age, and weight can affect the left atrium size. As to POTS or a component of POTS being the cause I do not know.
  17. Not sure who you are quoting. Personally i do shift from hot to cold. The memory foam willow helps with the hot flashes gives some relief. as far as i have seen it does not induce me getting too cold. When that happens i will just move the pillow. Yes this does interrupt my sleep. Like @Pistolmentioned a cooling fan can help during the day especially during the hot summer months. Like you this summer i went very symptomatic. Only advice is to take things one day at a time.
  18. @jillmaeI did buy a memory foam pillow that was advertised to have a cooling effect to it. I use it as a hugger pillow when i start getting too warm in bed.
  19. Hi, This was a very informative lecture. it is obvious that Dr Svetlana Blitshteyn looked ahead to this session. She did answer a number of questions that has been on my mind. It is starting to be more clear that POTS is just that going tacky when standing. The dysautonomia portion seems to have many contributing factors and symptoms. While i am not vested as to the cause of the POTS I am sure there is external factors that will trigger it.
  20. After reading the comments in this thread i almost feel a bit relieved that i am not the only one that has to endure High BP spikes. This has to be the hardest issue for me to get a handle on. While i have made great progress with the OH only have had a few episodes since we changed up meds, my old bp's went from anywhere from 80/55 to 160/98 but now the lows changed to 114/73 ish but the highs have drastically went up 198/110 and are not uncommon readings anymore. I'm sure the higher bp's attribute to my better response to orthostatic changes. I am assuming that the liable fluctuations are due to a component that falls under dysautonomia? I am getting a 24hr bp test. I hope it will shed some light so the Cardiologist can help stabilize the blood pressures.
  21. Well stress test for the most part went well. BP's not so well so an order was put in for a 24hr ambulatory blood pressure monitoring test. I did make some headway on the diastolic side but the systolic is still high. What gets me is that the providers in north eastern wisconsin do not offer and the nurses are unaware of the test. I am sure there's a reason for the spikes in blood pressure but have a feeling it is not vascular related as it is neurogenic. I did tank at cardio rehab.
  22. Hi @Ninnot sure i can answer your question directly. What i do know is that i know several nurses that wear compression stockings they help with leg fatigue most have to work 12 hr shifts. I have worn these just after my bypass surgery but was due to the edema. I have seen relief leg wise but is contradicted due to my health conditions. Hopefully a site admin can answer your question to the hyperadrenergic pots constriction. I did not get my question answered regarding nOH and POTS Regardless take your health care into your own hands and due what makes a difference. I would also consult your DR before making changes.
  23. I have noticed that my temps are lower when i get up in the morning and go up a bit during the day. My average temp hangs around 97.1 to 97.6. I know stress can influence temps as well back in spring of 2019 i was not feeling well and went into the walkin clinic my temperature was 102.3 and a hr of 120 and tested positive for the flu. Nurses took my vitals a second time and my temperature went down to 99 and the hr dropped to 62. I may have calmed down a bit while waiting for the test results. I know i was feeling pretty stressed when i first walked in.
  24. Not sure to answer back but i have seen many folks dealing with dysautonomia taking BP meds and it is not because of a cardiovascular disease. I just went thru ruling out a heart issue being my problem. If you do have a vascular issue the link i posted suggests a better out come. for me timing of meds makes a diff especially the BP medication my body does not due well with controlling blood pressure. I would rather ride out the highs from the bp meds while i am sleeping than having a pseudoseizure during the day when the meds kick in i have been severely hurt from doing so.. Hyperperfusion of the brain is just as good as a stroke IMO and does initiate pseudoseizures and i can not tell you how much they suck. Just my 2 cents worth. I still love you Hugs Mike
  25. I have had issues with producing too much histamine over long periods of time. Long story short this can wreak havoc on your body and will trigger symptoms. Once the DR's figured it out and got it under control I have had less episodes of presyncope (not perfect but better) By no means am i well vested in all that histamine does but in my case it did act as a strong vasodilator.
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