brand new device that helps with OI

[bobby]

at Vanderbilt university they developed an automated inflatable abdominal binder that is just as effective as Midodrine (the usual antihypotensive drug prescribed to patients). A combination of both the abdominal binder and the Midodrine is expected to give patients greater symptom relief.

not sure what this inflatable abdominal binder looks like. keep thinking of this:
[bimg=200|no-lightbox]http://g02.s.alicdn.com/kf/HTB1WhHoGFXXXXXfXVXXq6xXFXXX8/221742011/HTB1WhHoGFXXXXXfXVXXq6xXFXXX8.jpg[/bimg]

but now seriously
http://hyper.ahajournals.org/content/early/2016/06/06/HYPERTENSIONAHA.116.07199.abstract

Splanchnic venous pooling is a major hemodynamic determinant of orthostatic hypotension, but is not specifically targeted by pressor agents, the mainstay of treatment. We developed an automated inflatable abdominal binder that provides sustained servo-controlled venous compression (40 mm Hg) and can be activated only on standing. We tested the efficacy of this device against placebo and compared it to midodrine in 19 autonomic failure patients randomized to receive either placebo, midodrine (2.5–10 mg), or placebo combined with binder on separate days in a single-blind, crossover study.

In conclusion, servo-controlled abdominal venous compression with an automated inflatable binder is as effective as midodrine, the standard of care, in the management of orthostatic hypotension. Combining both therapies produces greater improvement in orthostatic tolerance.

 

[Cort]

at Vanderbilt university they developed an automated inflatable abdominal binder that is just as effective as Midodrine (the usual antihypotensive drug prescribed to patients). A combination of both the abdominal binder and the Midodrine is expected to give patients greater symptom relief.

not sure what this inflatable abdominal binder looks like. keep thinking of this:
[bimg=200|no-lightbox]http://g02.s.alicdn.com/kf/HTB1WhHoGFXXXXXfXVXXq6xXFXXX8/221742011/HTB1WhHoGFXXXXXfXVXXq6xXFXXX8.jpg[/bimg]

but now seriously
http://hyper.ahajournals.org/content/early/2016/06/06/HYPERTENSIONAHA.116.07199.abstract

That is so cool. So much better than taking a drug and abdominal blood pooling does occur in ME/CFS....Biaggoni, the senior author on the study, has done quite a bit of work on ME/CFS/POTS by the way...

 

[Who Me?]

Maybe it'll be like Spanx and we'll look skinny too!

 

[bobby]

Maybe it'll be like Spanx and we'll look skinny too!

oo! double win!

 

[HurricaneTexas]

Does anyone here with OI get a seizure-like response upon standing? I read somewhere online that this response is extremely rare, but I've never found anymore info on this. I have it quite often and it's scary to say the least. I am in the process of getting a tilt table test, etc to diagnose what kind of OI I have, but it will be several months before I can get into the Dr. These "episodes" are becoming more severe and more common as time goes on. More recently I've developed a new response where instead of the normal dizziness or the "seizures" I become very unbalanced (swaying) and quite confused. I'm really not happy about being confused like that, at all. And, I recommend to anyone that given the opportunity, don't go for the confusion option!!!! LOL

 

[bobby]

@HurricaneTexas I honestly don't think that it's very rare. I've heard many PWME who have POTS say that they have these seizure like states. They aren't regular seizures I think, cause they aren't measurable through standard procedures. But they are as real as it gets: I've heard people say they drop to the floor and get convulsions - is that how it is for you?

Have you been able to film these episodes when they happen (or have someone film them for you)? That could help a doctor understand how serious it is.

 

[HurricaneTexas]

@Bobby Ok, we'll that helps...kinda lol. No they're not like a typical epileptic seizure. They are similar to the clonic portion of a Grand Mal seizure. For me it comes on gradually and becomes more severe and then gradually goes away. I usually do not fall. It starts in my legs and goes into my abdominal muscles, arms and neck. It's like uncontrolled muscle movements, but much more than twitching. Like slow, severe jerks. I've noticed that my muscles are very tense, too. It's very hard to describe lol. I don't lose consciousness or have any hallucinations or anything, but it's kinda like I'm concentrating real hard on my body, or "in the zone" and I can answer yes/no questions, but with some difficulty. I have had them so severe that I have dropped to the floor, but it's been a conscious decision because I was afraid I'd fall. Once I do get to the floor and become horizontal it goes away almost immediately. Otherwise, it lasts 30-60 seconds, on average. Afterwards, comes the pounding headache and pulsatile tinnitus--big time. Once everything settles down, I'm absolutely drained and feel terrible, basically for the rest of the day. I've suffered through them for quite sometime because I hardly ever leave my house except for Dr appts and on weekends when my husband is with me. Lately they're becoming more frequent and after sitting for shorter periods of time, and they're happening in public! Talk about freaking people out!!! They want to call an ambulance and stick a wallet in my mouth all the while asking if I'm ok. You can't convince anyone that you're fine and to, please, just leave me alone, at that point! LOL
No, filming it never even crossed my mind. It's an idea though--it'd be entertaining at the very least! LOL

 

[bobby]

@HurricaneTexas what you are describing is exactly what I've heard from many other patients. I don't have it so I can't really give any advice, but I'm sure someone else will comment. It sounds rough, hope you can find something that helps!!

PS: could you please edit in some more white space in your text? most of us have difficulties reading big chunks of text. thank you

 

[San Diego]

@HurricaneTexas

PS: could you please edit in some more white space in your text? most of us have difficulties reading big chunks of text. thank you

Yes, please!

 

[HurricaneTexas]

@bobby and @San Diego I will do my best!

Sometimes I just get going on a tangent and forget!

 

[San Diego]

Thanks!

@bobby and @San Diego I will do my best!

Sometimes I just get going on a tangent and forget!

 

[bobby]

Sometimes I just get going on a tangent and forget!

after all your name is Hurricane!