Ehlers Danlos And Midodrine

[andybonse]

Hi All!

I've finally got my Midodrine 2.5mg, at last my first treatmtent!

Yesterday I had 1 quarter of 2.5mg tablet as I'm nervous of new drugs, but then I had a flare up the same morning so waited that out until today, I tried 1 quarter this morning and another quarter 2 hours after, so far I felt a few little tingles but that's(gave me a quick woah and excitement moment) it, now I expect nothing from these tiny doses of course but to feel safe taking more I personally have to take little. So tomorrow i'll take half and then a quater etc until i'm up to 1 tablet.

My question is, is it still ok to take them if you have a headache? Say you've been on the PC all day or listening to loud music and you get a headache, can you still take your Midodrine?

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Ehlers Danlos type 3, is my cause of POTS, I've come to terms, I've got this and will hopefully get some decent treatment to feel more reasonable.

What other drugs used in combination with Midodrine would help with this subtype?

I think if we use Midodrine say up to 10mg, and it helps as it should tightening the vessles which are more stretchy in EDS, and then add a drug such as florinef to increase blood volume, this should have a decent affect on orthostatic tolerance.

Of course, I dont want to be on steroids at 22, but if needs be needs be.

I'm just trying to figure out a decent set of drugs I can talk to my doctor about, he will know of them and only talk about them if he wanted me on them, but I like to learn, I like to know whats out there what I can question him about trying in the future.

As I see it, there must be some way to get relief from these symptoms of course not 100% but a life more easy to go through.

[Becia]

As one who's been suffering horrible migraines and having seizures a lot lately, if I feel like I need to lay down, I do not take my Mido... But I also take a 10 mg compared to your 2.5, so maybe the effects are a bit stronger? I hate missing doses, but I don't sleep at night lately, and if I need to take something to knock me out with the migraine, I can't risk hypertensive crisis, so I will skip, and my doctors are aware I do this on occasion.

[Noonoo]

Hi Andy,

I'm at the same stage as you-it's a long story so I've sent you a message!

Nuala

[Chaos]

I too have EDS hypermobility as a component of my POTS. When I was talking to my POTS neuro at Mayo at my last appt. he was saying that he's learned over the years of treating "us" that he thinks to some degree that tachycardia is a normal compensatory mechanism for our stretchy vessels so he finds that he doesn't have good success if he's too aggressive with trying to decrease the HR.

As a general rule he said he avoids things like clonadine etc and sticks more with midodrine and either beta blockers or florinef for this type of patient.

Of course every patient is different and needs the individual tweeking of meds based on their individual complement of symptoms. Ffor example, in my case, I have EDS as a component, but also have MCAS and had a post-surgical (neuropathy) onset along with a post-op infection (immune system) trigger, so there are multiple factors involved that need to be addressed.