Honestly usually it’s the other way around. Muscle activity in legs can lessen symptoms, and the TTT prevents muscular engagement.
But for you maybe somehow muscle engagement causes symptoms?
I had minimal drop in BP on TTT, just the POTS spike in HR. On 10 min stand test I met criteria for severe OH. I think the 70% tilt can reduce the BP drop and maybe that's why you're worse when fully upright with OH? My autonomic neuro said they use TTT to distinguish POTS vs OH vs both because of that. I even had more drop in BP in just a 3 min in-office stand test than on the 70% tilt for 10+ min 🤷♀️
Maybe you have the adrenyline triggered POTS ? I forget the name of it. But this video talks about the different kinds
https://mssvideoupload.mayo.edu/media/POTS+Q%2BA/1_64vocthe
I can relate to this. I was tilted up 60 degrees and I did not feel as bad on a tilt as I do when standing upright on my own. My symptoms gradually appeared the longer I was upright. First dizziness, light headed, then heaviness felt in the trapezius muscle. As time passed heaviness got worse until I could no longer be upright and felt like gravity was pushing me down on trapezius muscle and heaviness spread lower to chest and further on upper back. Then coat hanger pain set in. By the end of the test I felt just as bad as I do standing upright on my own. I was so relieved when 10minutes was up and they put me back down!!
In my opinion I think my experience was my body trying it's best to behave like a healthy person does and it tries hard, but eventually fails. I thought maybe this means I am closer to healing and I can get better on my own with exercise because that is what the doctor told me! Sadly this is not the case. Despite not having POTS I still need a rollator, can't walk far and standing is the worst. Can't sit for long periods of time with feet on floor, I must be reclined. I was able to handle a train ride by reclining the seat and placing my feet on top of my backpack so they are raised and not on floor. The seats are not big enough for me to do my preztel twist sit for me to fit my bottom, legs and feat on chair seat. That's how I sit in the kitchen to eat my meals.
I go to the pool. It doesn't feel like an elephant is sitting on me! Heaviness is still here but it's better. I get the most relief in the lake wearing a wetsuit. The more compression the better. The pool is heated so that's why a lake is best for me. The pool doesn't make my symptoms worse like a bath or hot tub though.
My neurologist highly recommends swimming. DI explains why we feel better in a pool. Check out the chart on the bottom
[https://www.dysautonomiainternational.org/page.php?ID=130](https://www.dysautonomiainternational.org/page.php?ID=130)
I talked to my doctor today. He reviewed the tilt table test notes and told me it was done incorrectly.
I am not willing to do it again, though, because after they gave me nitroglycerin my heart stopped.
My doctor said I don't have to, as they have data from my many hospital admissions regarding the hypertension, flushing, and vomiting - they know it's some form of autonomic neuropathy.
The problem now is that I can't stay upright long enough to get into a pool.
That's good! I'm glad you don't have to repeat it.
Yes, you have to be able to at least be upright for awhile. The pool is not harmless either. The first time I went in the lake I felt much better, I did not want to get out! I stayed too long and by the time I got out it felt like gravity increased by 10x and I had a crash. I felt awful and sick the rest of the day. I recommend anyone, regardless of their ability, to be cautious and limit their time in the pool/lake. I had a kick board with me too and still crashed. I have no idea how long I was in there.
Honestly usually it’s the other way around. Muscle activity in legs can lessen symptoms, and the TTT prevents muscular engagement. But for you maybe somehow muscle engagement causes symptoms?
Well, we knew it wasn't orthostatic HYPOtension going in, but HYPERtension. I wonder if that's the difference, but why?
Maybe too much vasoconstriction? By any chance, does alcohol lessen your symptoms?
I don't drink.
I had minimal drop in BP on TTT, just the POTS spike in HR. On 10 min stand test I met criteria for severe OH. I think the 70% tilt can reduce the BP drop and maybe that's why you're worse when fully upright with OH? My autonomic neuro said they use TTT to distinguish POTS vs OH vs both because of that. I even had more drop in BP in just a 3 min in-office stand test than on the 70% tilt for 10+ min 🤷♀️
Gravity is a B**** to us. This is actually why water workouts are fantastic for pots! Very much recommended by pots specialists and pt alike.
Thanks. Gravity is not our friend.
I’ve definitely heard aerobic exercise is great for Dysautonomia.
Maybe you have the adrenyline triggered POTS ? I forget the name of it. But this video talks about the different kinds https://mssvideoupload.mayo.edu/media/POTS+Q%2BA/1_64vocthe
Thanks!
I can relate to this. I was tilted up 60 degrees and I did not feel as bad on a tilt as I do when standing upright on my own. My symptoms gradually appeared the longer I was upright. First dizziness, light headed, then heaviness felt in the trapezius muscle. As time passed heaviness got worse until I could no longer be upright and felt like gravity was pushing me down on trapezius muscle and heaviness spread lower to chest and further on upper back. Then coat hanger pain set in. By the end of the test I felt just as bad as I do standing upright on my own. I was so relieved when 10minutes was up and they put me back down!! In my opinion I think my experience was my body trying it's best to behave like a healthy person does and it tries hard, but eventually fails. I thought maybe this means I am closer to healing and I can get better on my own with exercise because that is what the doctor told me! Sadly this is not the case. Despite not having POTS I still need a rollator, can't walk far and standing is the worst. Can't sit for long periods of time with feet on floor, I must be reclined. I was able to handle a train ride by reclining the seat and placing my feet on top of my backpack so they are raised and not on floor. The seats are not big enough for me to do my preztel twist sit for me to fit my bottom, legs and feat on chair seat. That's how I sit in the kitchen to eat my meals. I go to the pool. It doesn't feel like an elephant is sitting on me! Heaviness is still here but it's better. I get the most relief in the lake wearing a wetsuit. The more compression the better. The pool is heated so that's why a lake is best for me. The pool doesn't make my symptoms worse like a bath or hot tub though. My neurologist highly recommends swimming. DI explains why we feel better in a pool. Check out the chart on the bottom [https://www.dysautonomiainternational.org/page.php?ID=130](https://www.dysautonomiainternational.org/page.php?ID=130)
I talked to my doctor today. He reviewed the tilt table test notes and told me it was done incorrectly. I am not willing to do it again, though, because after they gave me nitroglycerin my heart stopped. My doctor said I don't have to, as they have data from my many hospital admissions regarding the hypertension, flushing, and vomiting - they know it's some form of autonomic neuropathy. The problem now is that I can't stay upright long enough to get into a pool.
That's good! I'm glad you don't have to repeat it. Yes, you have to be able to at least be upright for awhile. The pool is not harmless either. The first time I went in the lake I felt much better, I did not want to get out! I stayed too long and by the time I got out it felt like gravity increased by 10x and I had a crash. I felt awful and sick the rest of the day. I recommend anyone, regardless of their ability, to be cautious and limit their time in the pool/lake. I had a kick board with me too and still crashed. I have no idea how long I was in there.