MikeO

I get a quick sharp shooting pain from time to time but then i also get angina attacks that last a bit longer or should i say long enough to take a nitro tab.

If your pains have increased in frequency i would bring this up with your Dr. Last rash that i had we found a blockage.

@RexieI am so jealous your Camaro has AC  mine doesn't. I do get really chilled as well but saying that i can go to be really stinking hot (long johns are standard issue) nothing like walking into the local speed shop all bundled while the counter girl is half naked (explaining why i was wrapped was a bit awkward)

What i have been able to do is catch my temp swings while i am feeling cold vs hot. My normal temp hangs around 97.1 when i am cold it drops to 96.5 and when i am hot it is a normal 98.6. Might be helpful to check our temps?

So yes my faint and fall practitioner does take symptoms seriously guess i am lucky that way. We looked at the usual culprits (infection, thyroid etc...) came up empty. So what does that leave left? an offending drug side effect, broken (ANS) can't really fix that, poor circulation (Peripheral artery disease) can't fix that either. 

So we focus on what makes me feel better (and yes it sucks that i would even have to deal with this) on a really bad day a hot shower works, 15 mins on the treadmill also works.

I hope you can make some headway with your practitioner. 

Haha. have to chuckle at this thread. Just had this conversation with UW Madison today. 

10 minutes ago, Rexie said:

If I want to take my blood pressure and suddenly have the urge to pee, blood pressure will always jump higher, putting me into a temporary normal range of 120/80. After voiding, bp will then be its usual pitifully too low (below 90/60)

Interesting. I know my nurses keep telling me to pee first in the morning before taking my bp's. I think i am going to track this and get some readings before and after.

15 hours ago, Rexie said:

Mike, people who use atomoxetine in certain autonomic disorders take it twice a day. Doesn't interest me at all now for my case, but interesting anyway...

Yes this is interesting. I am sure some folks benefit from the drug.

Found a recipe for Chicken with Creamy Sun Dried Tomato Sauce. I can see using the sauce for more than chicken

https://www.recipetineats.com/chicken-with-creamy-sun-dried-tomato-sauce/?fbclid=IwAR3dMuzbdfNBEj3tsQbnN5fAGgcsM3LFbRvtXZOTq6cOwreBpfPnnWFkxk8

Hi,

Just reaching out to see if anyone has some experiences to share taking ezetimibe. For me so far we are battling the insurance company to get them to pay for it. My Doc had to submit a statement that it is medically necessary. Not sure if that is bad or not. 

Having to jump thru hoops i can't help to wonder if it will work or work too well and have to stop.

2 hours ago, cmep37 said:

Have you tried Midodrine? - it has a short half life (for me just less than 4 hours) and although it did give me rebound hypertension I don't think many people experience that.

No and i don't think my care team will even go here. My HR has been better since i got off the offending drugs (lisinopril and losartan) but my bp's have been all over the place. I do suspect we will end up with a short acting agent to handle (as needed) the spikes in blood pressure (nitro patch maybe?)  and yes the low (tanking bp's) do hurt (and to be honest sucks) but i know that living at a 198/100 is not helping. Big Hugs!

13 minutes ago, Rexie said:

Atomoxetine is metabolized in the liver; it has a half-life of 6 hours in most individuals (extensive metabolizers) but 19 hours in poor metabolizers.

Can't help but thinking the half life being a problem for us folks with nOH as most experience supine hypertension (i do) and the issues that we go thru with liable bp's (so my highs would get to high)

I have trial'd pyridostigmine as it does not affect the supine hypertension and has a short half life so you can take it a dinner time and it won't follow you into bed time. I do have to say it is effective for mild nOH symptoms but can't imagine it working with severe cases. we did track my bp changes and they went up 5 mm Hg both on the systolic and diastolic

Hi @Pistol- Good explanation, I am now smarter than i was this morning I did have a Central line in when i had my heart surgery. Nurses were constantly flushing it. I did run into a complication when they tried to remove it (it got stuck) i thought the nurse was going to faint.

I don't have POTS but issues with syncope or presyncope all the way back to my high school years. Always was dismissed until 2019 when i passed out going down the basement stairs and injured myself. at least now it is getting some attention

POP Slots on my cell phone.

Hi,

Just wondering if there is a difference between an IV port and Central line.  

4 hours ago, Scout said:

autonomic dysreflexia

This is usually associated will an injury or damage to the spinal cord. It also can be caused by Side effects of some medicines or other factors. Like you i am very sensitive to meds so controlling my liable bp has been problematic as well. I have done well with a Beta blocker but ACE and ARB's and channel blockers (causes swelling) are out of the question for me as i do not tolerate them well.

For now my care team just has me tracking my bp's and i have to notify them when i am over goal more than 50% of the time.

I did bring up guanfacine with my Doc's, they are not willing to even trial it. Hopefully you are seeing a neurologist that has experience with the drug. 

Copycat recipe for Wendy's Chilli.

https://topsecretrecipes.com/wendys-chili-copycat-recipe.html

On 8/26/2021 at 6:44 AM, Ashc said:

https://www.youtube.com/watch?v=6NXnxTNIWkc

What's Up - 4 Non Blondes 

@Ashcand @Pistol this is my favorite song. Thank You! 

1 hour ago, Dph said:

Have you ever figured it out or did it ever end up going away?

I do get this pain as well. not sure what the origin of it is but it does pop up more when i an dehydrated. doubt it is a dysautonomia issue. Cramps can be a bit intense. 

Day 3 of rehab. BP's still are bad. 198/100 to start but i did drop down to 148/88. strips did not look stellar.

53 minutes ago, Bergbrow said:

I’ve also been concerned with this mostly because I have a brain injury which led to my dysautonomia.  I’ve also read some articles on the connection to cognitive decline using certain classes of anticholinergic drugs of which diphenhydramine (ie Benadryl) is worrisome. Other classes of which Zyrtec and Claritin seem to belong are low risk and newest class of antihistamines like Allegra are supposed to be no risk.  Since I already have cognitive problems from my injury, I try not to intentionally do anything to make my brain worse. I take antihistamines daily so I can’t risk any further cognitive decline due to anticholinergic drugs.  

 

Thanks for queuing in! I also looked at the rxlist for the more seasoned folks in age. anticholinergic drugs are discouraged.

Made lasagna today. I don't handle carbs well but it is ok sure i will be grazing on this for a few days.

Update. The abnormal heartbeat that was caught on one of my tilt table tests really started bothering. So had the cardio rehab nurse look at it. She say's it looks like a junctional escape rhythm and not to worry unless i start getting a lot of them and become symptomatic (becoming Brady). Relief i feel much better now. 

4 hours ago, p8d said:

@MikeO Those are high BP readings. I can see why you had 3 nurses! Can you take your meds twice a day? That’s what I do with an extra beta blocker sweetener in the evening for supine hypertension. I do know that my BP goes up, sometimes scary high after walking around or exercising. I just stopped checking it then with the blessing of my former cardiologist. He said since mine drops while sitting and isn’t sustained it’s ok. 

@p8dreadings are totally high. Nurses did joke around that i may have been a bit excited to be be around them (Haha) but that is not the case i see these bp's at home as well. as i write this i am at 126/81  

Well Day 2 bp's changed a bit 198/96 to start. 145/83 at the end and i did not pass out or fall (Haha). I did change up when i take my meds to the evening. My diastolic pressures did go down. Not sure what to think. end of the day if the nurses don't see an improvement in the blood pressures they will get involved. Three nurses against one intake is not fair (lol) glad they are looking out for me.

Hi @PistolI am so Happy to hear that you and your family are doing well. I can't imagine what you have gone thru. I bet you are tickled pink that your POTS stayed under control

Rest up and get better.