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Sudafed?


katcanny
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Hi everyone,

so the midodrine is a no go for me and after seeing my specialist and waiting for a drug to be government approved which is four weeks away! I have been told to take sudafed PE? Has anyone else had any experience with sudafed PE? This new med I am waiting for was used for migraines but didn't catch the name but it starts with droxy something or other? 

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Droxy dopa? I don't think it is used for migraines though. Unless they think your headaches are BP related?

Sudafed makes me jittery. I can't take it. 

Maybe it is something else. I'm not on migraine meds, so maybe it is something else. 

But you could be getting Northera. Either way, I am eager to hear how it works for you. 

Kim

 

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Hi Katcanny

The new drug is likely to be Dihydroergotamine - a real mouthful to pronounce! It's primarily a migraine drug but can also be used for POTS. 

I've tried sudafed PE (pseudoephedrine) and found it to be really good for POTS, improved my ability to stand and reduced fatigue dramatically.  There are some earlier posts on other people's experience as well: 

 

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My daughters use Sudafed a lot.  It helps tremendously with their migraines and their vertigo.  We have always treated their vertigo like a migraine because, for some reason, some of the things that we used for the migraines we had noticed helped with the vertigo.  Sudafed being one of them.  Years ago I learned that Sudafed was the key drug in bringing my migraines under control.  I use Fioracet and one Sudafed tablet.  If I don't used the Sudafed with it, the Fioracet doesn't work as well.  Are you using the Sudafed for bp, migraines,  vertigo, etc? Oddly enough, my oldest daughter was prescribed a low dose of Midodrine, but it made her real gloomy (not her at all), and it was actually triggering migraines.  It also wasn't helping much with the blood pooling in her legs.  We just went back to the Sudafed.  The girls only use one tablet at a time, and it's the regular kind, not the PE.  I've found that it doesn't work as well.  Hope this helps!

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Thanks for the input everyone!

my specialist said that the sudafed is a Vaso constrictor too so since I reacted to the midodrine so badly we will try the sudafed to help with that until I get this next drug for me to try which is in the approval stage. It makes me more alert but that's about it but I'm still upping my dosage at this point. I ended up in ER on a couple of bags of fluid as my adrenaline rush I had left me with a headache for four days and really dizzy so home now and back on the sudafed today! Dizzy girls that midodrine made me so angry at everyone and I was irritated by anything and anyone is was horrible I was not myself either. 

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  • 3 months later...

I tried the sudafed and WOW! what a difference in ability to stand longer and do more! Instead of 30-40 minutes tolerance of standing, I can last an hour and a half!!! Big change for me.  I am able to feel at least a bit more productive

Thanks for the info!

Debbie

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