MikeO

I have constant tinnitus in my left ear. have had it for years. can't say it's from "POTS" as i do not have it or from a autonomic dysfunction. It is suspected to be vascular in nature just from the fact when i have a skipped heart beat the tinnitus stops for the second or two it takes my heart to get back on track. Just like @MaineDougmentioned mine gets worse when i am in a flare but then so is my other vitals.

At one time i was ok with steroids like you mentioned my bp's went thru the roof as well as my BG's. they do help me breath better but at what cost.

I did have a kidney ultrasound and part of that they look for spray coming from the kidneys. well i was well fasted so nothing was noted. My Cardiologists nurse today did note that my weight is liable but then so is my BP's and blood sugars. not sure if they will do a diuretic but i know i am retaining fluid so for now i will back off the water. for some reason i am retaining it. i have stopped peeing like i normally do. go figure. @Pistolyou are right a water pill is not good for a nOH person but the weight gain is stressful.

well if this has not come back to haunt me. over the last few weeks or more i have seen my weight fluctuate from 178 to 189. today i went from 180 out of bed to 187 as i write this. not sure what is up but i did message my cardiologist as i have reported this already and continued to monitor. only thing i did was drink a liter of water. sure a water pill is coming.

@Sarah Teehave you been keeping an eye on your blood pressures especially when increasing meds doses. Also ACE inhibitor are effective but one side affect is the "lisinopril" cough which some folks get and some don't. personally i can't take either an ACE or ARB without a allergic reaction which are mild but annoying. As always never know how a drug will work for you unless one tries. Good Luck.

this statement is so true. even my Endo stated my DM is atypical. not sure what else to say.

@Sarah Teethere is help still in WI that much i know (contrary to what i was told). but i will never get why providers like the faint and fall clinic put their heads in the sand. drink more water and squeeze your butt when standing right? I will keep pushing to get help. what still gets me is some of the doc's write papers as to autonomic dysfunction and one in particular started the faint clinic yet they do not practice what they preach. Too Much. more coming

you are in good hands. one step at a time.

My PCP has one more gal working on this. she has been in contact with Froedtert and there is a process to be seen which is being pre diagnosed via tilt table which i have done twice and was revealing. she has been in contact with Dr Figueroa's office to get thru the process. All i can say is do not use the blind term dysautonomia and use autonomic dysfunction. sure there is more to my story coming.

well one more let down. finally got a call from Froedtert and again they cited they do not have a dysautonomic clinic and when i pressed the response the gal did say they do testing and referred me back to the referring clinic. Too much. so i fired back at my PCP. will see where this goes.

@Jason_X I have read that Tizepatide does come with fewer side effects as well. Do expect some weight loss with the drug. It's also advised to take on more fluid. I do the intermittent fasting and have been good with it. seems like every time i try the 6 meals a day or a normal 3 meal a day i just end up with higher glucose levels and start feeling sick. Stick with what works for you for sure.

Have not taken either of these but i can tell you that metformin was a no go for me. big show stopper was bad cramping. from what i have read it's a mixed bag for folks taking either of these drugs. some do ok with little side affects some with mild and others just can't tolerate the meds. my Endo takes Ozempic and only thing he deals with is a bit of burping. I am a diabetic as well. I can tell you for sure when my blood glucose levels get high or out of control i am very symptomatic orthostatic as well as mild tachycardia among other issues. can't say i have insomnia but i do get up multiple times in the night to relive myself when my BG has been high (diabetic pee). There is a pill form of Ozempic (Rybelsus) that maybe more tolerable. for the gastroparesis i would take to your doc. only reason i have not tried these drugs is that my Endo suspects some sort of pancreas/malabsorption issues so we are sorting that out first. Just a friendly reminder eating low carb helps. Good Luck! and keep us posted.

This should be helpful to find resources that maybe available in your area or at least for a provider to see or to avoid. Most folks with POTS take a low dose beta-blocker as it helps to take the edge off the tachardia. I don't have POTS but i also take Carvedilol and tolerate it well. What also helped me is over the last 2-1/2 years is i took the approach of only making or working on one change at a time. I have found when too many changes are made at one time (for me anyways) it's hard to identify what works and what does not. so my first focus was to do a complete med change. we started by stopping all my old meds and worked on the beta-blocker, then added the CCB and then the ranolazine. whole process took 6 mo before we got it right and me becoming stable with the drugs. i also have done the same with foods (still working on this one) and what affects my fatigue and every other stuff i deal with. What this has left me with is my transient drop in blood pressures (source of syncope) that can't be explained so my doc is working on getting me into a autonomic testing clinic (not hopeful but have my fingers crossed) What also speed up the process was me logging vitals and food eaten and activities. I actually spent two months taking bp's and heart rates almost every hour and looked what i was doing and it did show a pattern as to what was affecting me. Good luck with your sleep study (i think it's worth looking at) and finding a specialist.

@Pistolmy PCP office has been in contact. Again not sure why i am tossed around but my PCP did not request to do the referral. I know there is some animosity between providers. for sure Mayo will not take a direct referral from UWM citing they need to learn this stuff (and they know it) and the first time i did talk to Froedtert they pointed me right back to UW. While Froedtert does not have a dys clinic they do have a state of the art autonomic testing facility and two docs that work with autonomic dysfunctions. just hoping for some help. Best, Mike

Well i am going with one more let down for now. I waited a week to hear back from Cardiology's referral to froedtert so i reached out and got a simple message that my PCP will do the referral with no explanation. I soo feel like i keep getting passed around. Sure my primary will discuss next month when i go in. I did fire my faint clinic for not doing their job. if all they can offer is tell you that you are orthostatic (which i already knew for years) and to drink more water sigh, well so be it, not very helpful. i just need answers and some help if it can be done. @Pistol

Thanks @DADofPotsSonfor the tip. I see my PCP next month so i will add Singulair to the list of to discuss. I did take a few benadryls just to nuke my symptoms and have been taking Claritin since and has been helping.

sorry you have to go thru this @mehaller. i have been here with my lower back and my cervical spine. i don't know for sure if there is a known direct link to any flares but when my spine acts up i seem to have more GI issues with it. I can tell you for sure there that the pain is a direct link to me being crabby Haha. Hang in there. if that disc is going to shrink it's going to take some time.

Have been orthostatic with this as well. just asking what folks due for this. claritin or allegra?

I would see a eye doc. blurry vision can be caused by many issues. my eye physician gave me some yellow glasses for when i flare up. cheap pair of readers helps when needed. My vision for sure changes when my blood sugars get out of control (like clockwork) blood pressure can do it as well. he did look at my blood vessels which looked ok but my pupils are not the same size. upside they respond in a favorable manor.

Yeah this is a bit scary. Sure this is why food was making me feel ill for so long. I do see my endo next month.

well my Cardiologist did get stuck with this for sure. I know he is not happy with the faint team and did say it outright with last week's meeting. He does have pull at UWM. More to the story coming. Notes below. i just hope that froedtert still will see someone like me.

@Sarah Teehappy to hear you had a productive office visit. crossing my fingers that the diltiazem work out better for you.

Oh @Pistoli already said proceed. I have been turned away from a referral to froedtert before. I am just hoping my cardiologist has the pull to get me seen. Big hug BTW.

Hi Mike, After Dr. Deano has discussed this further with Tania and Dr. Goldberger, he would like to have you establish with the Autonomic Dysfunction Clinic at Froedhert. Please let us know if you would like to proceed with this option. Thanks, Taylor RN