MikeO

The County i live in provides shots. It has been an easy process to go thru.

Glad to hear this works for you but in WI we would get in trouble for it. To be honest i would pass regardless. especially with a bad flare, (today is bad) nothing will fix it but sleeping.

Just my opinion but i luv theses. Might be just as good as reading. My favorite is X-Minus One. (I am into Sci-Fy)

http://www.otr.net/

On 11/30/2018 at 9:33 PM, Derek1987 said:

I just started taking mestinon to slow the heart down which elevated my pressure to where I felt sick. So I was put on Lisinopril to counteract that. It seems the Lisinopril is cancelling out the mestinon because my heart rate is back to being in the 130 plus area when I'm standing up. When I took mestinon alone, it would go to about 110 or so. And my blood pressure is low now. So it seems like only the blood pressure medicine is working and I don't want it to go too low because I already have fainting episodes.

I have had issues with Lisinopril causing higher heart rates (thought i had super secret POTs at one point) was to the point i could not even move without palpitating all over the place. 20mg will definitely bring down the BP but, for me was way too much so i am now OFFICIALLY banned from it. IMO Lisinopril is a nasty little drug for some folks.

I am now only taking a beta-blocker and mestinon (pyridostigmine) HR's have been good so far, my low BP's are under control for the most part (not perfect) downside is i have issues with high BP spikes so we are working on that.

9 hours ago, MTRJ75 said:

https://www.nytimes.com/2021/08/16/us/vaccination-booster-shots.html?smtyp=cur&smid=tw-nytimes

So it seems the new recommendation is for another booster shot 8 months later. I got two shots and advocated for every adult to get their shots, but they kicked the crap out of me for at least a month. If this is going to be an ongoing thing twice a year, I don't know that I'll be able to keep up. This is just awful. 

Just heard this on the news this morning. Sure i have thoughts on this just can't get them out due to brain fog.

Waiting on the next thing to go bad with my body

This was aired on PBS. It is about the home town i grew up in. How awesome!

https://www.facebook.com/watch/?v=691400231611681

4 hours ago, p8d said:

Has anyone gotten the third vaccine yet?

No, not sure if i qualify for it at this time either. I know i did not have a problem with the first two doses so if my turn comes up i may go for the 3rd shot. Covid can be nasty IMO.

3 hours ago, Pistol said:

I wonder if this is because our adrenaline levels fluctuate during sleep?

Kinda wonder this as well. Thinking back i am sure i ran into this during the day pre-beta-blocker. So i do take meds first thing in the morning so am i not making the distance with the dosage? or seems the tail end is not making the distance. Cardiology wise i don't think there is a big concern.

Just Glad i am not not the only one that feels this.

@gertieI have passed outside as well. IMO was due to high heat. went full syncope with no recollection as to what happened prior to the event. as @Pistolhas mentioned has done better with the med changes as well.  Knowing when to get to the floor works.

Hi,

I get some rapid heart beats for a few seconds while sleeping from time to time. Have caught them on holter monitoring as well. Mostly i notice them in the early morning hours. They happen when i turn over in bed as well as laying on my back. are these common with folks that have dysautonomia or POTs? 

Pretty sure i am not in love right now or pregnant (lol) and can't imagine any anxiety while i am a sleep (or is there? a dream maybe) 

Just wondering if other folks experience these.

13 minutes ago, MarcoS108 said:

coffee enemas to improve their vagal tone

Too be honest outside of being really constipated i have never heard of this.

Well had to look this up ophthalmology and see that @brainchildedited this to  optometry. Most Doc's will advise to get an eye examine. They are a window into other health issues. I did pass to some degree my recent one (i had issues with one eye being a bit more dilated) Best i can do for now is to keep any eye on it (pun intended)

1 hour ago, CallieAndToby22 said:

It's just something they medically do for IC. You start to form patterns.

so do you do a log similar to this? I do spot check my bp's before i eat and about 45 min - ish afterwords and it does show a hypotensive drop in blood pressure which makes me feel ill. I do know carbs like pasta is harder on me for sure.

I don't get brain/zaps per say but i will experience body twitches/jerks and some involuntary need to take a deep breath while power napping on the recliner. Only seems to happen on this thing (get a feeling it is possessed since i have had more issues using it) never happens while i am in bed or should i say i am not aware of it.   

Heat is for the tight muscles in my neck.

Well i kinda looked at this from a perspective if you get stung by a bee you will avoid it next time you see one. I may try a diary just cause it makes sense and i can bring it into a Dr's visit if needed.

@MarcoS108Not sure about your system. All i can say is when my digestive system shuts down either while in a flare or otherwise eating is the last thing you want to do. Large meals also cause issues like low blood pressure, nausea and feeling full and bloated for a day or two. What i eat also makes a difference personally i would rather eat a small meal that does not make me feel sick than one that makes me have to take some down time to get over it..

Saying the above some folks that eat a small amount end up being in pain. Sure that would cause some fear of food as well as loss of weight  

17 minutes ago, Pistol said:

I am now an official grazer

OMG @Pistol i thought i was a lonely grazer in a field of dysautonomia . The smaller meals do help. 

Well starting to think that eating gets my BP down. Just not the fix i am looking forward to doing.

44 minutes ago, CallieAndToby22 said:

I don't like greek yogurt, it's really heavy and barely sweet. We can't put brands or anything on here. 

Get it thank You!

Well i can tell you that i do not like eating generally don't do well with it. It is said that folks with dysautonomia also develop IBS. I know when i have a flare or not i may not eat for two days. And yes i do fear eating eating but i know i need to. What has helped is playing around with foods that i can tolerate, takes time to figure this out. I am still working on it.

Rumour is to eat soft foods that are easy to digest and more smaller portions i.e...5 small meals instead of 2 or 3 larger ones.

@CallieAndToby22 @Pistol Now you two have me Hungry. Any particular yogurt better than other? I did try some Greek stuff seemed like dy sour cream. 

On 8/11/2021 at 4:19 PM, MTRJ75 said:

I even bought some kind of apparatus that you put around your neck and turn on and it's supposed to stimulate blood flow, but the benefits seem to be minimal so far. 

I took my PT's advice yesterday and applied some heat to the back of my neck. Surprisingly made a difference in how it feels. 

4 minutes ago, MarcoS108 said:

@MikeOThat can also happen if you eat a meal without adequate fat and protein to slow the release other carbohydrates into the bloodstream as well. Same goes for snacks

Thanks! Yes i have noticed that i do better with eating protein.