Sufferer

14 hours ago, Random-Symptom Man said:

My numbers vary significantly from day to day. On the day of my TTT, I was feeling pretty good, so they only measured a 30 bpm increase in HR in 10 minutes. The doctor didn't want to give me a diagnosis of POTS, because it was at the cutoff.

I wear a smart watch that measures HR continuously. I often wear a finger pulse ox to make sure the watch is calibrated correctly (and because my O2 trends low). Sometimes I see only 25 bpm increases upon standing. Other times I see a 50-60 bpm increase. Heat makes mine worse. An active day usually results in worse POTS the next day. Eating too much for dinner will also make mine worse the next day. A bad night sleep, makes me more potsy. I'm new to this diagnosis, so I probably don't know all the things that make it worse.

Knowing your numbers before you go in, and having them written down (ideally a bunch of times on different days), may help. It did for me.

Sucks man.

Next time do a HIT workout and eat a large dinner day before, load up on alcohol, sleep short, oh yeah and visit a sauna

I feel you and hope you get something out of the TTT. I have been pondering going to my GP but am worried i'll get the standard "eat some more potato chips and some licorice" reply. "O yeah have you tried exercising?".

Its difficult enough to tell your partner you cant keep up with simple cleaning chores, but it would help if you can get a diagnosis.

There is a center here where i can get a TTT but i need to go through the GP to get basic vitamin markers excluded

Probably he will think i'm exxagerating.

Hope you find something!

I will do a couple reruns with the testing and update.

For a normal person, does the heart rate increase temporarily and then drops back to what it was before? Say after one minute?

My energy is always low.

Especially if i have to work in an airconditioned room, or in hot sun and then must bend through my knees, i get a lot of dizziness.

105/65 after 5 min lying down in rest
Hr 69

114/66 sitting up straight, then after 1 minute
Hr 76

110/68 sitting up straight, then after 3 minutes
Hr 80

106/72 stand up at 5 min, wait 2 minutes and measured at 7 minutes
Hr 96

116/76 standing measured at 9 minutes
Hr 97

I think i didn't do it quite accorddingly to the test. When i stood up i wanted to measure at 6 minutes, but the machine didn't detect it because i let my arm hang down, so i stretched it out again in front of me.

Normally it runs 100/60 and i have low vit D. If i go to higher levels i achieve ~120/80.

Ok i always thought POTS included low BP. Strange.

I tried to test myself with a pretty decent home BP meter if ny heart rate goes up 30 when standing but it didn't. Is such a meter good to use standing for testing HR?

My BP is good when i take vitamin D to fill up my low levels.

However, i still suffer from dizziness upon standing. Hence i still don't feel good.

Anyone know why this could be? Anyone have this? Is there a form of dysautonomia where BP is good but you still suffer orthostatic intolerance, if so what is is it called?

Hi,

I have posted earlier about wanting to train my legs with resistance training and got some great ideas.

However i thought "is there a way we can stimulate leg muscles without exercise?"

First thing that came to mind is a leg massaging device for leg circulation. Has anyone tried it, and what was the experience?

Second thing that came go mind is electrical stimulation of muscles. There used to be tv commercials for devices doing this with regards to the abs. Anyone have any experience with this regarding strengthening leg muscles?

On 6/5/2019 at 12:53 AM, Hhh16 said:

My doctor recommends a rowing machine.  I bought one from Walmart for $119. It works all of your muscles,  not just your legs.  The arms fold in for easy storage and major bonus it doesn't make a horrible sound. Also try compression leggings.  These seem to help. But for me, I can't wear them very long because my skin is sensitive to constriction on my skin for a long period of time.  I also am exercise intolerant.  So I'm still finding a happy medium for how long I should do it for so I'm not miserable for the next week.  Best wishes to you. 

I read this several times as alternative to recumbent bike. But what i remember from school/gym is that it feels way more intense of a workout.

In how far does this work out legs? As far as i can remember it feels like 10-20% leg muscle recruitment at most.

It also does not have leg resistance apart from via the rowing rope.

Any idea?

On 6/4/2019 at 11:25 PM, Pistol said:

@Sufferer - sorry, as far as I know knee-high is not even recommended, I assume socks are useless. To prevent blood pooling thigh-high or waist-high is best. Why don't you check with a medical supply store and have them advise you? 

I read conflicting reports. Understood that POTS sufferers can have abdominal compression, but for other forms of dysautonomia this does not work.

I am looking for something that like i said doesn't irritate my skin.

As i'm a guy i really dont want to be wearing from feet all the way to the abs, so any working alternative would be great.

I read that the calves are really important in that they provide a "calf pump". Anyone hear this?

What is better? Pure calf compression or will socks suffice as well?

You know as a hairy dude i am not looking forward to have too much wrapped the entire day, especially summer.

4 hours ago, Lily said:

The resistance band leg presses might feel wobbly because you are using small stabilizer muscles that you don't normally use much.  If this is the case, continuing to do them will result in improvements in stability as those small muscles strengthen.  You could also ask your girlfriend to push on your legs as you push back.  What about lying on your back and using your legs to push yourself backwards around the floor?  Or get one of those dollies that mechanics use to roll under a car and rig up something squats-like.  Maybe attach your resistance bands to it and to a wall, so you have to push against the resistance?

I think your last idea is brilliant! Didn't think of this myself. Pretty cheap too. Might try to attach it to my large bed, and take a low resistance band as to not move the bed too much but at least get some resistance for a small pump and do more reps.

Thanks Magalot!

Hello,

I am a male 36 years old who hasn't had a diagnosis of dysautonomia or pots. All my life i haven't felt really energetic or looked energetic in any kind of way. I have always craved salt as well, since i was was younger i would literally eat bouillon cubes out of my hand. Always had the feeling of fainting as well.

I've had treatment for low cortisol, thyroid and testosterone. One of the key findings was i was low in vitamin d. High dosing it made my BP normal again, but horribly constipated (which is one of my other main issues). It didn't however solve the issue that when i do physical work where i have to lower my body multiple times and raise it (i.e. squat many times) i will nearly pass out. The hot weather doesn't help either.

I have had some success with exercise, namely stationary bike. I ride this for 20 minutes without pushing myself. This gives me a lot more energy but it still isn't enough.

Do you have any suggestions on exercises i can do for the lower body which can be done horizontally? I would love to go to the gym but i know myself and i probably won't be able to keep up this type of schedule.

I have thought of buying a leg press or machine for leg curls/extensiona, but my girlfriens will probably laugh as she knows i won't stick to the schedule and waste space

Any ideas for equipment, which is not too heavy to transport or too spacy?

I have tried stuff like mini stepper (vertical and murder on ky knees), and mini treadmill (murder on my knees).

Stationary bike doesn't kill me (i am probably a mild case) but i don't want to overdo it, so i am just looking for a strength counterpart to the cardio, which is just minimun effort but helpful. I am thinking leg presses, calf raises at the minimum.

Have tried the resistance band leg press but it's too shaky/wobbly.

Also do compression socks (not stockings) help in any meaningful way and what compression works for you?

Guessing that i'm a mild case i might get away with the stationary bike and compression socks.

Thanks!!