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Adjusting Meds - Do Any Of You Take This In Your Own Hands?


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As many of you know, I've had to juggle a lot of medicines (with setbacks here and there) to find a decent mix.

Anyway. It seems to get the 'best treatment' from my meds I have to somewhat self-manage them. I've got the 'ok' to do this with Midodrine (some days I need to take it twice, some days three times) and my EP says this is common.

When I try a new medicine I'll often try a lower dose than prescribed and work my way up. Sometimes I come clean about this, sometimes not, but I do not like jumping into something full-strength right away. (I'm not talking about things like allergy medicines or antibiotics, I'm talking about POTS-related meds).

Now I am back on Mestinon (was taking 2 X 60mg/day) and then tried the 180mg timed release which was pretty much an 'overdose' dose and I was terribly ill all day and twitching. Now I am taking 2 X 30mg/day for a week, working my way back to the 2 X 60mg/day that I was on...my EP said to 'get back on it' since it was helpful, but I'm doing it at my own pace.

My family sometimes gets irritated I do this...but I know it's easier on my body to work my way back into my old dosage (or to ramp up a new medicine). Is this terribly bad?

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I do the same, my cardio had me on 70 mg. of midodrine and I have slowly weaned myself to 40 mg. my doc has advised me to do what feels comfortable, as he is still learning about pots himself. I have also done the same with my beta blocker, due to be over tired. This has worked for me, though I have at times had to up back up to original doses due to my symptoms getting worse. It seems to work for me, but I have learned to do the weaning or adding slowly. Hope you find what works for you! :D

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Anyway. It seems to get the 'best treatment' from my meds I have to somewhat self-manage them.

I always do this, except for antibiotics. I'm sensitive to any changes. And my family does not know that I do this because I do not want to be explaining things to people who don't live in my body. I would have no problem telling any of my doctors. They haven't minded me doing this.

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My doctors actually encourage me to do this. They'll often start with baseline instructions such as "start out at this-or-that dosage" with the provision that I move it up to a point where it's helpful yet tolerable. I did this with mestinon and lasix. To a lesser extent, I did it with a beta blocker. I tried it years ago with Wellbutrin, but could never move it up enough and after a couple of years came off a very low dose that was doing absolutely NOTHING for me.

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Hi,

I also adjust and try medications in ways that my body can tolerate and I feel comfortable doing. I know this can be frustrating for physicians and family members, but remember that dysautonomia is not a "textbook" condition, and it can't be managed like one. There is no evidence that if we take this or that medication at this or that dose then we will have the best health outcomes and least amount of symptoms, the way there are in other conditions. Besides, many of us are exquisitly sensitive to meds, and only we know what we feel and how our bodies react to things. It's better to give something a modified try than to not try it at all. I feel comfortable self-managing and self-trying medications because my formal education is in pharmacy and medicine, but I think that it is best to be honest with your doctor and communicate your concerns. Maybe when you start a new medication, explain your sensitivity to medications, and ask them if it is safe for you to start at a lower dose or play around with the doses. If it's not going to harm you, then they should be willing to work with you to find something that you tolerate that will give you the best quality of life.

~ Broken_Shell

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I also go very slowly. When the physician recommends that I go on a med, I ask to get 1 month's worth AND I also ask "permission" to start low (cut the pill in half, etc) and work my way up. My doctors always endorses this protocol unless it is a capsule or enteric coated.

Just a few days ago the doctor wanted to give me an adult epi-pen prescription. I appealed and asked for a pediatric pen because of sensitivity to meds, and she agreed - writing the prescription for multiple pens so that if the first pen is ineffective, I can do it again right away because two ped pens equals one adult pen. That way, I'm covered. Start slow. Increase if necessary.

I have a great doctor!

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I do whatever works, with my doctor's blessing, he says I'm the only one that knows how I feel. The one exception would be my potassium, but I take a huge amount, so if I go up on it, I just need to go in and get my level drawn a couple days after I up it or lower it. But even that is a prn, so I don't need to call and let them know, they just get a lab with a note on it. morgan

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I'm so glad you asked this question. I have been so torn on this. My current EP doctor I don't think has ever treated a pt with POTS and I often feel like I'm treating myself but feel guilty if I adjust things without approval. I feel like I need to be on a different beta blocker and when I brought it up to him he said we could switch it if I want. I guess I would feel better if he could come up with some treatment suggestions based on his medical experience. He could at least attempt a little research for me to help figure out the best one for me. There was a stretch when I couldn't control my BP and felt like I needed some midodrine for an extra boost and the nurses couldn't give me any advice and the next available appt was 3 weeks away. I wanted to start my midodrine so badly but I felt I needed expert doctor approval to do so. I ended up just being miserable from something that seemed so easy to correct. I'm an ER nurse and have had POTS over a year now and I'm starting to figure out what meds help and don't help. It's good to know there are some who are adjusting their meds based on their symptoms and I'm looking forward to finding a good doctor who can help me with this.

Thanks to all for sharing!

Brye

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