Ugh, I've Been "dumped"

[Zap]

Well, I'm not surprised that this has happened yet again, but I'm sure many of you can relate. I've basically been dumped by my autonomic neuro. Maybe I should just say he is giving up on trying to figure me out. I also suppose it would be more accurate to say I've been thrown back over the fence to my migraine neuro, but regardless she isn't the one who should be treating my autonomic symptoms.

We had discussed other drug options at a recent appointment, and I called to ask about trying something else (a beta blocker), as the tricyclic is giving me symptoms I didn't have before, and the overall net is as bad or worse than what I was dealing with previously. So, when I get a call back the nurse tells me that I should talk about that with my other doctor.

So, that said... I guess I'm also supposed to ask my migraine specialist about the sleep/wake cycle problems, digestive disregulation, the weird aches and pains, and the overactive sweating. She has stuck with me through everything so far, but I know she isn't going to want to / be able to treat me for all these things. That is why she sent me for dysautonomia testing and consultation.

I'm also still left wondering if my symptoms are being caused by something else like inappropriate sinus tachycardia, since that is a dysautonomia distinct from but similar to POTS.

It's times like this that I am very inclined to go back to just treating myself - I've been tempted to see if the Eucommia bark (a natural beta blocker) would keep my migraines at bay instead of the tricyclic. It just seems like I can't find anyone that studies the details as much as I do, so I'm always left disappointed.

Add to this the problem of trying to fight the evil (private) disability insurance to actually pay me something (I've been off work a year now) since the migraines were/are most definitely disabling, not to mention other symptoms. Also, add in the fear of having to actually go back to work at a stressful job where I feel marginalized and unappreciated, while still a hot mess, with no understanding or support. UGH.

A while back now I asked my migraine specialist if I would have to end up going to Mayo to get an answer. She said no, but I'm starting to think it might be the only way to get a comprehensive answer with doctors that work together instead of just trying to throw me over the fence and make me someone else's problem.

If adversity builds character, I think I have enough character for a few lifetimes. *sigh*

[issie]

Don't give up the fight. You are starting to understand things and you won't be the first one to treat themselves. I was able to stay away from medicines for years - with my own treatments. Just in the last 5 years have I resorted to meds and trying to treat things that way.

Mayo is a diagnostic place mostly - then they prefer for you to use your local doc. I, however, live in the city where Mayo is and my neuro is there. He is not knowing which direction to go with me either. I'm trialing something that seems really contrary to what one would think would work for POTS . . . .we will see. Just started it today.

Issie