Compression Stockings Making Symptoms Worse!?

[Lenna]

He came pretty close to passing out during the tilt table test. He's never passed out before.

[issie]

That's what I would have expected. Does he have issues with nausea too?

[HopeSprings]

Wow interesting. So producing too much NO or not having enough can both cause OI? What the heck - why aren't we all being tested for this? The research on POTS seems so scattered all over the place.

[issie]

Wow interesting. So producing too much NO or not having enough can both cause OI? What the heck - why aren't we all being tested for this? The research on POTS seems so scattered all over the place.

Not enough doctors doing research. So few know about POTS, much less that there are different subsets and some have to be treated one way others the complete opposite. That's why we can sit here and talk about this and that, but what will be good for one will be horrible for another. If we try the traditional stuff and it makes us worse - there has to be another answer. It will take time for it to all get sorted out. We are our best advocate. Keep searching and keep pushing for answers.

Issie

[Lenna]

That's what I would have expected. Does he have issues with nausea too?

When he first got sick 4 years ago, the dizziness and nausea were very bad. About 8 months into it, he started taking Domperidone for nausea and he still takes it 3 times/day. I think that nausea and dizziness are minor problems for him now although they occasionally flare up; his biggest problem now is fatigue and lack of energy. He's seen improvements since starting Losarten but the fatigue still plagues him, especially in the morning hours.

[issie]

I'd never heard of that med for nausea. What I read about it is that is surpresses dopamine D2 and D3 and also increases salt. It wouldn't work well for me because I always seem to have too high salt issues. But, I remember reading a connection with dopamine and POTS. Can't remember what it was about - will go back and see if I can find that. I'm using a homeopathic product by Hylands called Motion Sickness. It works really fast. I have times when my nausea is awful. Never throw-up - just want to. I have real bad dizziness too. (These two things usually come at the same time.) I think part of it is the lack of oxygen to the brain probably because of lack of blood flow or low blood volume.

Since dopamine is the feel good hormone. Wonder if the drug is depressing his too much and that could be causing some of the fatigue.

[issie]

I just looked up about the dopamine. Noriepi is the next step in the chain of breakdown from dopamine. Maybe they think by surpressing the dopamine levels it will supress the noriepi levels. So that that might help the HyperPOTS and the release of too much noriepi.

But, the warnings on the drug says it can cause tachy and other heart issues. It has caused high salt levels and some other serious issues. Does it help his nausea a whole lot? Does it seem that his noriepi has decreased, has it been tested again?

Issie

[Lenna]

Issie, it really is a balancing act, isn't it! Dan is very underweight and lost a lot more weight when he developed POTS. He tried everything else for the nausea (except Reglan...I heard too many horror stories about that). Domperidone was the only thing that helped. A while back he tried cutting back from 3 pills to 2 in the hopes of relieving some of his fatigue, but the nausea returned. However, you've got me thinking about this again...he hasn't tried to cut back on Domperidone since starting Losarten. Now may be a good time to experiment a bit.