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What's Next?


Lukkychrm42
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Hey everyone,

I'm back in school with 3 months until graduation! I'm also tutoring, and although I'm busy and a bit worn out, I'm mostly anxious to get through the semester.

Now, of course, my meds are really not working. In the past week I've been taken off the labetalol, upped my proamatine to every 3 hours, and since Wednesday was back to labetalol just once a day. But It's pretty much... lousy. I do what I have to, but I use my seat cane a lot more than I'd like, and if I don't have it I need it. My cardiologist, Dr. A. in Virginia wants me to fly back to see him- and he knows I'm 2000 miles away. I know many of you travel quite far to see the doctors, but he's talking about in the next couple weeks, and while I know it's technically feasible, it's so much to miss with 6 classes including my thesis. Of course I don't want to imagine the alternative, either! I WILL finish this semester!

So anybody have any clues what might be next on the list to try? I've done and failed toprol, florinef, propranolol, midodrine, betaxolol, and labetalol. The healthcare plan I'm on means that it's cheap to see the doctors, but medicine is limited coverage, and I'm already paying $650 for a month of proamatine, so i know procrit is not going to happen at the moment.

I'm so stressed out right now- sorry I didn't mean for this to be a rant... of course, I was sexually assaulted last Saturday by a supposed friend.. but my wonderful guy came here from the UK yesterday. ;) Just more things not to have the energy for, I suppose. :)

Anyway, I know I'm not the only one here not doing wonderfully, but what other things HAVE worked for you guys?

Thanks

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I am assuming some of these drugs are to help keep your HR down? I failed Toprol and other such drugs many times also. They would work for a while and then I would have breakthrough Tachy. I am now on Coreg 12.5 mg BID and it has been working for over a year. I hope that was what you were talking about.

Good luck. Susan

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when midodrine (proamatine)and florinef no longer worked for me, my cardio( who was a resident with dr. grubb by the way and co-wrote papers with him) put me on ritalin LA.

i have not been unconsious in 3 months on it.

according to him, midodrine is a derivitive of ritalin. i have not found any confiramation on that, but that is what he said.

it cant hurt to ask.

So anybody have any clues what might be next on the list to try? I've done and failed toprol, florinef, propranolol, midodrine, betaxolol, and labetalol. The healthcare plan I'm on means that it's cheap to see the doctors, but medicine is limited coverage, and I'm already paying $650 for a month of proamatine, so i know procrit is not going to happen at the moment.
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Oh Dear-

I am so sorry about the assault. Of course, the stress, fear and vulnerability of that situation must add to your physical symptoms. Have you spoken to a professional about what happened? Do you have the energy to press charges, etc?

I'm so glad your guy came to support you. Please talk about this to anyone you trust to work through your feelings. What happened was awful and not your fault.

Rest and heal, my friend. Working out your meds is important, but working on your feelings/fears may do just as much good. Our minds can definately cause our bodies to go haywire.

Hugs-

Julie

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Hi. It sounds like you're dealing with a lot. Any type of stress makes my symptoms act up. Are there things that you can take off of your plate to ease your burden through graduation? I also agree with Mack's Mom that getting rid of stress can be just as effective, if not more, than tinkering with meds.

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Hi Lukkychrm,

You certainly are facing a lot right now. And I'm so sorry about the assault.

Like others said, stress can make POTS worse. If there is any way to relieve some of the stress, that could be just as beneficial as new meds.

Wish I had a suggestion for a great med to try, but unfortunately I don't. I've never had much success with meds. Salt, Gatorade, water, and compression stockings work the best for me. But keep looking into new meds - there's bound to be one for you! I'm still trying to find my magic med too!

Would it be possible to have a phone consultation with your doc so that you don't have to fly down to VA? Maybe he would have a suggestion for a new med and could order a new prescription for you.

Hang in there,

Rachel

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