Doc says that since midodrine didn't work, it therefore isn't dysautonomia

[amiascending]

I'm at a complete loss. I've been having this issue for over a decade. At least since 2009. It's just been getting worse and worse. I can't shower anymore, I need a walker to go out with my dog, my dining room is more like a rest stop between the living room and my bedroom. I can't stand long enough to rinse my dishes and bending over and backup to load the dishwasher has landed me in the ER with a concussion more than once. My resting heart rate is 120bpm and my blood pressure is usually lower than 90/60. I have been tracking my blood pressure with a cuff for years now. If I'm sitting for more than 20 minutes, and i stand up, my blood pressure plummets to 70/40 or lower and my heart rate skyrockets. I either faint or almost faint. My vision goes black, I get light headed, knees weak, tingling extremities. Relieved by sitting or laying down. 

I've seen so many doctors. So many. All of them refused to do anything more than an EKG and tell me to see a psychiatrist, that it's just anxiety. 

I DO struggle with mental illnesses, a lot of them. I had some seriously messed up things happen to me in childhood and it's left a nasty scar. I got 99 mental illnesses but anxiety ain't one! My most recent psychiatrist has been working very hard to make sure none of my meds lower my blood pressure and we have been actually looking to see if I can change to some meds that raise blood pressure. Last summer she spent like 3 weeks combing my medical charts and doing research and came back to me with "I believe this is some form of dysautonomia." We talked about salt, more water, compression garments, staying out of the heat, eating smaller but more frequent meals, tilting my bed, etc. Unfortunately the big dysautonomia specialist in my area does not take Medicare (I'm on disability for afore mentioned mental health issues). So I found a doc that at least knew what it was when I called and asked and took the next appointment... A year later. 

 

So I just had it last week. And I worked my behind off making sure none of my mental health records ended up in his system. I know I shouldn't hide stuff, and I did put down my psych meds so he could probably have pieced together that I got *something* going on. But he walked in and basically said "this is a cut and dry dysautonomia case. I don't even think we need to do a TTT, I don't want to torture you when the answer is already clear."

 

So I got put on midodrine and within an hour of taking it, I could hear my blood and my pulse in my head, it felt like my brain was being squeezed, my vision started going, and no pain relief methods worked. I do get migraines, and this was most definitely NOT a migraine. It finally subsided like 5 hours later... Just in time for the next dose. Two days of this and I for sure knew that it was the midodrine causing the issues. Meanwhile, there was no change to my blood pressure or heart rate and I was still getting pre-syncope. I emailed him, he told me to stop and that his PA would call me the next day to discuss next steps. 

 

PA started off asking a lot more detailed questions about my meds and I owned up to "having a trauma disorder" but emphasizing that my psych had done extensive testing and ruled out all psychiatric causes. PA kept prodding for exact diagnostics of my mental health and then managed to pull my records from a hospital that was affiliated and saw my exact diagnosis and she looked so smug, like she had just solved a puzzle, like she was Sherlock Holmes who had finally found the solution to a century old mystery. She told me that since the midodrine didn't work, and since I have this specific mental illness, it has to be a psychiatric thing. Why is it that the only doc who thinks it ISN'T a psychiatric issue the psychiatrist? 

 

So... Now I've had my diagnosis revoked? Because midodrine didn't work? Apparently midodrine works for everyone and if it doesn't work, it's because you don't have dysautonomia and I'm just... No longer willing to accept "it's all in your head". Are there no other treatments? Is there not other testing for this? I'm mid 30s and if the temp is over 80°F, I'm just bed ridden that day. I use paper plates and compostable silverware because I can't stand long enough to do the dishes. I use a shower chair and carry a collapsible stool with me everywhere in case I get winded and light headed. I have brain fog, GI issues, repro issues, I don't sweat, thyroid issues, migraines, the list is lengthy and I just can't believe I had an answer, a diagnosis!, last week and now it's being ripped out of my hands because 1 medication had bad side effects for me and the PA found out I have a severe mental illness caused by childhood abuse, which apparently precludes me from having physical health issues???? 

 

I don't know where else to go except traveling out of state. I checked the physicians list here and a few others and the closest one that accepts Medicare and new patients is hours away. I emailed the Mayo Clinic and Vanderbilt and asked to be put on the wait list at Hopkins POTS clinic, I have been combing through NIH and other research places for studies I could sign up for but don't meet the criteria of many of the ones currently recruiting. 

 

Where else do I go? What else do I do? Sorry for the wall of text, I'm angry and hurting and for a few wonderful days I had hope and now I've just been cast back into despair. 

[Jyoti]

This must be so disheartening!  Obviously you have a complex situation but the impact is very severe, regardless of the cause.  And the doctor's job, in my view, is to ascertain that cause.  The fact that midodrine didn't work has absolutely NO bearing on whether you have dysautonomia or not.  That is either ignorance or a red herring to distract your gaze from what it sounds like--the psych diagnosis is more convenient.  

Midodrine does not work for many of us!  And in my experience (as well as others' I am quite sure) there is a process of trying out different meds, discarding many along the way because the side effects are not sustainable, or because they don't improve our symptoms.  Hopefully, and as is the case for many, there is something that helps if you keep trialing what is out  there.  Which is only possible, of course, if you have a knowledgeable and cooperative physician.

I wonder--can you ask your psychiatrist to consult with this new doctor?  It sounds like you have a psychiatrist diagnosing a neurological/cardiac problem and whatever this new doctor is (you didn't say a specialty) diagnosing the symptoms of a psych issue.  It might help if they would put their heads together, especially now that the cat is out of the bag about your mental health history.

[MTRJ75]

5 hours ago, amiascending said:

Why is it that the only doc who thinks it ISN'T a psychiatric issue the psychiatrist? 

Ironically enough, this actually got me disability. The judge was convinced by independent doctors that it was a mental issue until they brought in a psychological specialist who actually knew a bit about the disorder and was able to state that this a very real and difficult physical disorder. 

I know traveling out of state can be very difficult. A lot of doctors have been more willing to do tele-health or video appointments since COVID. If you have to travel, perhaps it will only be for an initial consult or perhaps you can do a consult from home to see if it's even worth traveling. 

[Sarah Tee]

I’m very sorry that you had to deal with this.

I mean, you could feel the midodrine working – it was just doing the wrong thing for your body.

All that means is that vasoconstriction (or even just this type of vasoconstriction medication) isn’t right for you. It says nothing about whether or not you have dysautonomia.

As an example, there are people who have refractory dysautonomia, which means no drugs or treatments work for them. They’ve still got dysautonomia though.

Another possibility to find a specialist is to join a dysautonomia support group on Facebook. I know Facebook can be tiresome, but it is good for local knowledge.

Many of us here have to travel to get to a specialist, although telehealth may be possible after the initial consultation and testing.

As we say in Australia, don’t let the b******s get you down! Your psychiatrist believes in this, and she is the expert on mental health.