MikeO

22 minutes ago, Pistol said:

So - what specialty a doctor chooses does not make them a better physician! 

Been here as well...

@JCO My BP is very liable. from what i have read it is not uncommon for dysautonomia folks to experience this. I have not done many poor man's tilt tests but have seen the elevated diastolic pressures and then see it come down substantially. One example was in the clinic when they did a 5 min supine measurement and i was something like 168/102 and the three measurements while standing. last reading was 120/80. i also routinely squeeze a 162/102 and the Docs office then when the nurse rechecks a bit later i will pull a 145/85.

The systolics look really good. if it were me i would spot check BP's for a week to establish a pattern and as always if you are concerned i would reach out to his clinic and ask a nurse

I agree throwing meds at orthostatics has its downside. While i am not a doc i can tell you med side effects are real but when needed do help. Post is too vague but i would talk to your health provider.

8 hours ago, Sarah Tee said:

Oh, I just remembered that the probable reason that CCBs cause insomnia is that they block calcium channels and researchers have found a calcium channel in the brain that is essential for one of the sleep stages. Block that, and you are staying awake, I guess.

By chance have you been tested for OSA?

3 hours ago, Pistol said:

That - I believe - is the reason many docs wont touch dysautonomia with a ten foot pole. 

Know this one first hand. I do give my primary and cardiologist credit for trying to help. both recognize dysautonomia or a better word autonomic dysfunction. both of my TTT showed disimular results. my cardiologists complaint is that the faint clinic i was engaged in should have been helping. at this point it is clear they want nothing to do with me. after his phone conference with them and he ended up taking a lead to get more testing done, is telling.   

20 minutes ago, Pistol said:

@MikeO have you ever tried cauliflower crust? You can look a recipe up online and it is sooooo good! You can also buy it in stores. 

I heard of it just have not seen it in the store by me. I will look it up online and see if i can make it at home.

2 hours ago, Water Lover said:

I also have tinnitus. It may not be quite constant—there are times when I do not notice it—but it is most of the time. My impression is that it has been worsening over time, though it is not at this point interfering with my hearing and I tolerate it. 
 

I’ve also noticed the connection with flares—in fact I’m experiencing worse than usual symptoms today, and I remember noticing last night that my tinnitus was worse than usual. Tinnitus as early alert system?

as @Pistolmentioned and from my experience hearing changes can be a heads up. here is what a young gal wrote in a POTS writeup. i can send the link in a message if anyone wants it.

• Hearing; heartbeat in ears, whooshing/ waterfall/rushing sound, ringing in ears, can’t quite hear or understand people talking to you or they sound far away, sounds are really muddled 

2 hours ago, Sarah Tee said:

Diltiazem seems to be causing me short but unpleasant bouts of nausea and diarrhoea, during which my systolic goes up, as does my heart rate. But the diarrhoea and feeling hot and sick is the worst bit.

If I’m going to resume everyday activities out and about, I don’t want to be worrying about running to the loo. Did enough of that when I had ulcerative colitis.

So, back to the doc for the next option.

Diltiazem can go in the maybe pile – if it turns out the diarrhoea was from something else, I can always give it another try down the track.

so sorry to hear this. I have had some not so good go with meds but not with a CCB or beta-blocker. I have been put on plavix and ranolazine that caused some nausea and diarrhea but passed a month later as i got use to the meds. systolic bp will go up when a bit stressed. if you were to look at my blood pressures you would be amazed. so a few bad squeezes may not be concerning.

Over the years i learned when to bail on a drug. "lisinopril cough" is one. breaking out in hives and tea like urine is one more (ARB meds). GI drugs like metformin (severe cramping) is one more. Pyridostigmine is one more but apparently i have a love hate relationship with the med so i am back on a low dose that i can handle.

It's not out of the norm for dysautonomia folks to take several weeks to adjust to meds (has been my experience as well) and GI disruptions are common also.

and to be honest i do not even ask or look up side effects with a new med or stress over them but just let them happen if they do occur (out of sight out of mind) and if i run into issues report them and then act 

Good luck   

Made a pizza. crust is a store bought one. pretty much can throw anything you want on it and still works.

The two pieces did raise my BG (160) not the worse i have seen.

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.

7 hours ago, Pistol said:

My autonomic specialist always warned me not to take any because they would send my BP through the roof.

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.

1 hour ago, Sarah Tee said:

did they do a bladder scan ultrasound and emptying study?

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.

25 minutes ago, GasconAlex said:

If you have rare (or really atypical) conditions then it becomes complicated and you need to find doctors who are willing to give you the extra mile

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   

40 minutes ago, Mary T. said:

Thank you all for the advice.  I'm glad that I found this group.  It's one thing to know in the abstract that there are other people going through similar difficulties, but another to actually join and participate in that community.  I wish I had joined sooner!

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.

50 minutes ago, Jason_X said:

and I’ve also noticed that my symptoms seem to get worse if I eat anything that causes my blood sugar levels to bounce.

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.  

On 8/18/2023 at 3:17 PM, Neomorph said:

I have joined a regional dysautonomia group! I will definitely ask around about specialists because I don't have any in my corner yet. 

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