I'm A Little Confused...

[DizzyGirls]

It wouldn't be the first time, but I'm a little confused. My daughters have been battling Dysautonomia for a very long time, and POTS since their first onset of puberty. During this time we have been told many things by many doctors (sound familiar!). But, now that we are finally with some doctors that seem to have a clue about this illness, they won't prescribe anything to help it. Their opinion is that they are on so many meds already that they don't want to prescribe anything new. My response to them was that if we finally found something that actually worked, rather than my just patching them together, maybe they could get off some of these other ones that they don't like. I don't like them either! Maybe I'm presenting their illness wrong...I don't think so, but maybe. As with most of us, we have a better handle on this than the doctors do. I thought it was sort of a trial and error thing. If one doesn't work, you try something else. What does it take to get some of the right meds? Any helpful ideas would be much appreciated!

[statesof]

I think that many doctors find POTS/ dysautonomia to be a difficult thing to treat since it is so varied from one person to the next. I know that my POTS I went to three different doctors before they wanted to prescribe anything (prior to that my migraine specialist tried me on a beta blocker which was not a good fit for me). I think a lot of it has to do with symptoms, for example I don't pass out or have low bp so things like midodrine haven't come up, and my hr isn't on the high high end and with the beta blocker not helping that sort of took out that option. So I think you do have to work with your doctor and explain that maybe the current medication protocol isn't working well, and if they think there should be adjustments made? I know some of my doctors were very hesitant to try meds just because they felt like they didn't really know what was actually going on in my body, so it's like dropping medications into the unknown.

[Katybug]

I find that it takes a little while with doctors. I don't ask to try things I have in mind until I've seen a doctor for a little while and have developed a relationship. I also find that clearly explaining what my goals are, in general, and when I ask about a specific treatment is an important piece of communication with my docs.

[DizzyGirls]

Thank you for your replies! I'm still trying to figure out what their goals are, and keep trying to "nicely" explain what our goals are. I feel like I will have to stick with these doctors as there are no other doctors in our area (SF) that I have found that know what to do with all of the symptoms. I see my bright daughter's health dwindling down by the day and get so frustrated that they can't see it too. We have been going there for over a year. This road is always a difficult one, as there are never enough doctors of this sort to go around to the patients that so desperately need them.

[Katybug]

DG,

At one point, I was very frustrated with where I was with my health. I started a document that listed the things that were working and going right and a separate section of what wasn't working, what things I was struggling with the most. I then prioritized the 2nd section in order of what made my quality of life the worst. When I went to my docs, I gave then a copy and told them my priority was to improve the top 3 bad things. (Now that I'm saying this, I may need to redo this exercise myself! Lol!)

I worked on this document whenever I had a thought, not right before I went to the doc. I probably added to it for 3 weeks prior to giving it to any docs. It helped me gather and organize my thoughts and really focus on what was causing me the most problems. I also found some of my docs seemed to find it easier to understand/hear my concerns easier by reading it. (This isn't totally shocking as a lot of docs are good at reading and absorbing information. It was almost like they could read the "conclusion" to a research paper I wrote on myself. They can relate to that.)

Maybe this is something each of your girls can do and you can do one for each girl and then combine them to give to the docs.

[yogini]

That question is so personal for each patient. Our bodies are unique and each person's POTS is caused by something else. If your daughters have specific symptoms that are untreated, you might want to post about those to ask what others are doing to help with those symptoms.

If your daughters are on many medications already, you may want to meet with your doctor to discuss each one and whether it is actually helping. Though I am surprised that the sheer number of medications would be a reason not to prescribe a new one, if the doctor thought it would help.

Some people need lots of medications to treat their POTS, but often just one right med (or the right combination, like beta blockers and florinef) is enough to do the trick. Medications can have side effects and that could also be part of the problem.

In addition to medication, there are other treatments - like compression hose and exercise - that may be appropriate.

Good luck to you.

[looneymom]

If you think a medication is not helping, I would ask the doctor if you could wean your daughter off the medication and see if you notice anything better or worse. If something gets worse, you will have your answer if the medication is helping. Or if the doctor thinks she is on too many medication, what would his suggestion be.

[abizzle229]

I found that it took me to find the right doctor who fully understood me. My first doctor, after not tolerating a few medications we tried, straight out told me, "I really don't know how to fix you or help you anymore. You will have good days and bad days. I will see you in 6 months!" I left devastated. But that only pushed me to go find ANOTHER doctor, who believes me. I work in healthcare, and it is all about finding the right doctor. Finding the right doctor who will help you and be patient with you, makes a world of a difference with treating any illness.. especially any dysautonomia!!

[DizzyGirls]

Thank you all for your help! I appreciate all of the words of wisdom from people who know.

Katybug, That is an excellent idea about keeping a log of the most concerning things. Sounds like a good place to start.

Since I started this post, I did receive a call from my daughter's cardiologist. He has some good areas and some areas that I think he is maybe not up on the autonomic part of this, but he could be a possibility. He increased my daughter's Florinef to 0.2 and she is not passing out in the shower any more. Still gets lightheaded some, but not as bad. I guess I was focusing on her heart rate too much and thought that it coincided with the blood pooling in her feet. Evidently it does not, and he was concerned with the fact that her feet were turning purple. That's when he increased the Florinef for 2 weeks and said that he might throw in a trial of midodrine if the Florinef alone does not work. Our cardiologist seems to be a little more proactive than the neurologist. Nothing is working great, but without the Florinef, it was a lot worse. So, baby steps. It's hard to watch your children feel so ill. Oh, and I have to give the cardiologist credit....he actually called himself. Not the nurse, but him! That has never happened at any of the universities that we have been too. Definitely a positive. So, we will keep doing what we do and hope this helps. The journal, though, that will keep me focused.

Thank you all for your continued support. You people are the only ones who truly do understand. Best wishes!