How Do You Know Your Medication Isn't Working?

[franziska]

Hi!

How do you personally decide when your meds just aren't living up to your expectations and that it's time to make yet another dr appointment to discuss changing meds/doses?

I've been on midodrine for almost a year now and still dont feel great. I get confused because: what is "great"? what is normal? I've been living with pots since puberty and honestly can't remember what 'normal' feels like. My biggest and most problematic symptom is shortness of breath when standing. I still feel like I can't breathe when I stand. My meds have been upped from 2.5mg 3xday to 10mg 3xday. Today at school I could barely work (I go to school for woodworking, was using chisels today, almost all work is done standing at a workbench) because my heart rate was so high. Clearly the midodrine hasn't cured me of my symptoms. But am I just expecting too much?

How do you decide when to talk to your dr and bring up the fact that maybe the meds you are on aren't working? I have a whole other host of symptoms still plaguing me, even though I've been on midodrine and florinef for a while.

Thanks for any responses.

[Raisin]

Yes, that is truly an excellent question! I don't really know the answer either. It seems that for alot of us, each day can be so different from the next re symptoms. I guess I just go by my general trends. If I notice that I am trending downward for awhile, I would be more apt to do a doctor check in. Or, if I am noticing ing something very different from my usual, I may check in as well. But, my appts. seem to be in 3 month increments so I usually wait it out. I also get out of breath alot more, lately, though, and I have been wondering when is the point where you maybe go to the ER for a possible IV fluid infusion? It is a quandary for me also and I hope others answer this post too!

[Katybug]

I didn't think midodrine was helping me so my pots neuro had me stop it for a week to see if I felt worse off of it. I didn't so I remained off of it. If I had felt my symptoms increase I would have resumed taking it. You can't test all meds that way of course but since midodrine is short acting he said it was an OK experiment. Please don't do this experiment yourself without consulting your doctor first.

[Tuesday]

I agree with katybug - talk to your doctor about how much you can adjust your own meds.

I've been on and off Midodrine and Florinef for years. My doctor and I have discussed how much I can adjust my dosages myself, and I've come to understand when and how to dose up or down. It's helped me manage my symptoms better.

Sometimes, for whatever reason, a particular medication stops being effective, or your body changes and you may need a higher or lower dosage to achieve the same effects. It's incredibly frustrating, but the more you can monitor and adjust your doses, I think the better you will feel overall.