MikeO

Get the word out...

well the only thing that happened today was the eye doc. had nothing left, dang.... it did go well but not stellar and he does acknowledge issues so more work on my part.

Have a big day planned today. Do laundry, take a shower, go to the eye doc, stop in at pharmacy, go food shopping, clean out the fridge (badly needed) and do dishes. Hopefully nothing bad happens!

I get a kinda zap feeling or some sort of surge when i am sick or my allergies kick in or am in a flare, not sure what to call it or even what the triggers really are. That's all i know.

@Macho319please let the community the results. all i can say is preload is like blowing air into a balloon (venous refill) and afterload is the air rushing out. If you have heart failure you would know it as shortness of breath and fatigue is the most relevant symptom. I have and still have to deal with this. Hopefully your doc can give you some insight.

well @Jyotii stopped my pyridostigmine and sure it's for good. i am so sad cause it does help but the side effects (bad stomach cramps and nausea and aggravated GI) finally kicked in and just is not tolerable.. not sure if there was some other trigger but i stopped yesterday and i feel better. I hope you do better than i have. Edit: whatever you, do not eat popcorn

@Macho319been reading more into NAFLD and the effects to the body. is very interesting. I already have some of the cardiometabolic risk factors, hypertension, dyslipidemia, CAD, Type 2 diabetes but only slightly overweight. Reading that about a 1/4 of the bodies blood (don't quote me on this) gets pushed threw the liver kinda makes sense to me that heavy or even light meals makes me symptomatic (very orthostatic) as a lot of blood is pooled to the GI so a dysfunctional liver is just another roadblock not leaving enough blood for the heart and pulmonary system (venous return). also makes sense that my HR goes tachycardia after the meals as the sympathetic portion of the NS is activated to try and maintain homeostasis. I do see my cardiologist next month and will bring this up. Not sure what medical discipline would even care about NAFLD sure my PCP won't but i also have upcoming appointments with my endo and a new scope with a gastro.

well second look at this post. i feel bad you found out the hard way. Looking back i found out that i was in heart failure from a surgeon visit for a hernia just after a stress test. I totally sank to the floor. so i waited a couple of days and never heard from my then PCP so i called in to find out what was up. Dang nurse had some smart comment as to the surgeon should have not read the report but when she tried to find my PCP she had no luck finding her so the oncall doc was called and he did not want to mess around and put a referal into cardio. I went into failure again about a year or so and that's when i was put on ranolazine and it's very effective. helps with the preload (diastolic stretch of the heart) and rumour helps with the PNS tone as well as the microvascular. Not pitching a drug here but heart failure is beatable. Look up and not down. https://www.ecrjournal.com/articles/efficacy-ranolazine-improve-diastolic-performance-heart-failure-preserved-ejection

So sorry to hear this. I have had a cabg 4 bypass and my ejection fraction is actually good but was put on ranolazine to help with the heart. it's not a common drug but has been effective for me and a game changer. Just sharing what is working for me.

I cleaned out the garage and of all days it was 92 degrees and humid. woke up later sitting on the garage floor and can't recall how i ended up there. so i went to bed. day and a life of Mike.

Totally! get this. Good luck with the move! we used to be able to get ANS testing in wisconsin but as of late has gone to the wayside. UWM won't do it even though they write useless NIH papers on it. Aurora lost their dysautonomia doc and could not find a replacement for her so they closed the clinic and froedtert in milwaukee closed their clinic as well albeit they still can test but are picky as to who they take in and tests are minimal. sure some of this is because they are losing money and if my provider does merge with them and take over, well froedtert is going to lose a whole bunch of doctors.

@Macho319food can be quite the stressor for various reasons. can't count how many times i have done a food reset (back to my known safe food). when i don't get it right i will know it within the first 15 minutes and will feel ill for the next 4 hours or so. eating smaller portions and low carbs is what helps me.

so sorry you are having issues. I can't diagnose you but when i feel GI issues (flare ups) i get SOB and yes nitro does not help. One drug for me that does work for the (unknown pains) is ranolazine but seeing you are in a pinch i am just not sure what to say.

@Pistolmy German mom always thru a ton of covers on me as well. I would give you one more smoochy kiss for sharing but we may be related Lol. Bird i am sure will give you a peck...

my Cardiologist says i can take claritin or allegra for the allergies and mucinex for the expectorant. can't remember the last time i took a OTC cold med sure there is a reason why i don't. If you can handle alcohol (grandma's recipe) is a bit of brandy and honey in your tea.

yes! For some reason not feeling like the med will be easily available in the future. I know i am like you as well if i mis a dose i know it.

Well what upsets me is that this NIH paper was written by the director and a DO from my faint clinic and the director of Nero yet they do no testing outside of tilt table tests and only screen for cardiac issues i.e arrhythmias. They don't even test for the plasma norepinephrine which is telling for HPOTS folks. I had always questioned them and my Endo even mentioned that OH is symptom of what? My Endo did go on to cite that a transient dysfunctional ANS can really mess with organs and may have a hand in my DM and GI issues so in my mind it would be relevant to at least know what part of my ANS is mis firing. For now both the Endo and my PCP both agree insulin would be better suited for me but won't prescribe it cause of my transient vitals as they worry it will cause low BG at times. So for now i have to go down another rabbit hole and see a Gastro (sure it won't hurt) just in case there is an issue with the liver or pancreas but i doubt find a whole lot.

Figured out my Docs understand being short of breath and the generalized term fatigue. My endo gets the term pumping like molasses but that's because he has diabetes as well. we often gauge how i am feeling to how well i can go up and down the basement stairs. bad day i will be SOB quickly and very nauseous .

https://pubmed.ncbi.nlm.nih.gov/31753129/

My clinic said they don't care about the OH subtypes as knowing won't change the treatment. My argument has always been knowing what portion of the ANS is not working well is telling for other issues that most of us experience.

well @Jyotipharmacy called today and wanted to know if i was still taking pyridostigmine even tho i have a active prescription. i just hope this drug is not going to the wayside. did see there is a newer myasthenia gravis drug coming out in the market.

be honest no. Dr. Blitshteyn has already noted that side effects from SSRI can cause symptoms. while a SSRI maybe a lifeline for some folks if is also a stressor for others.

i can't diagnose you but i am pretty sure that the criteria for hyperandrogenic POTS is a increase in systolic BP >10, substantial increase in HR (tachycardia) or norepinephrine levels > than 600 pg/ml upon standing. Grubb’s 2011 study described hyperadrenergic POTS as having an increase in systolic blood pressure of ≥ 10 mm Hg during a tilt table test with rapid heart beat (tachycardia) or serum norepinephnrine levels that were greater than 600 pg/mL upon standing. (The mean standing norepinephrine levels in Grubb’s hyperadrenergic study were 828 ± 200 pg/mL; normal range: 520 pg/mL.)

Good job! on advocating for yourself but Sorry to hear that your test results were positive. hopefully lifestyle changes will make a difference for you.

best i can tell you i do present at times then not other times. I don't have POTS but the outcome is the same.