Dr. Potato head, or Tater Tot

Photoshopped pic of doctor made out of tater tots

My neurologist.

Ah, well that is one neurologist I will not be seeing again.  He has the bedside manner of a potato.

I saw my primary care later that day.  He mentioned something about autism.  “Oh speaking of autism, saw a new neurologist today…definitely on the spectrum.”  He could not interact WITH me at all.  Could talk TO, but not WITH.  At one point, when talking about visual symptoms, he said “those blue flashes aren’t migraine.  what does your eye doctor say about it?”  I say “well, I had an eye doctor who I saw when I started seeing star bursts around light points last summer, and I was going to follow up with him but he died.”  Tater Tot shook his head.  I said “What’s the head shake for?  He was really old!”  Oh yes, I did.

At least he didn’t come across like someone who is looking for a fight.  And he came across as so globally socially non-normal, that while I left there saying over and over to my husband “my GOD!  I mean, just….my GOD!”, I did not take it personally.

Primary care:  “Did he have anything to say about the migraine meds?” “Oh yeah.  He could talk to me just fine then, when he was delivering what was basically a lecture after he took my history. He even was able to call up his ‘smile subroutine’ at that point.”

So, Zomig for abortive med, he wanted to do verapamil for prophylaxis but that has bowel implications and my primary care was like “no!”  and he wants me to switch back to amitriptyline from nortriptyline.  I was to ask the GI doc about that, but she was like “hi/bye” during our phone check in this week.

Primary care is at the end of his rope here.  “Is there anyone you can see who knows about this shit?  I’ll take directions, I really will.”  Since I am showing a good number more and more severe autonomic dysfunction symptoms, primary care is sending me to the Best Itty-B.A.T.H. (i.e. “BI-BATH”) in Big Northeastern City.  BI-BATH is not in the mega-hospital network up here, but it is affiliated with Ye Olde Ivy League University Across the River and they have a “Center for Autonomic and Peripheral Nerve Disorders”.  I think it’s just one neurologist and a handful of post-docs, med students, and RAs, but hey whatever.  I’ll take it.  They did my tilt table test in 2010.  Primary care really wants me to go to Baltimore too, for the EDS.  “Ok but what is that going to do, I mean, I’m not saying no but if it’s just ‘yep, you have EDS’ (again), then what?  Do these people actually talk to each other, talk to you?”

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  1. So sorry (but love the photo!). Healthcare is such a mess in this country. I really do think you will get way more than just another Dx of EDS if you go to Baltimore. I know I read somewhere that Dr. Francomano writes a huge report for your physicians and she’s an internist, not a geneticist–I read up on her for the hell of it. Well, you could always call to get the scoop. I used all my cell minutes up trying to figure out where I would go in LA for my surgery.

    I’m sure you’ve tried everything, but did Tomapax work for you prophylactically? I take it for my pain (works a teeny bit and I only take 25 mg) and no GI symptoms, and I get that from about every drug. I know it’s labeled for preventing migraine and seizures..

    Glad you’re going to the new clinic or whatever you call these places. So different from the SW. Maybe they’ll have a clue–super ANS-y in my mind.
    A 🙂

    • I think I did try that. Maybe not that one. I did try a seizure med for migraines in 2010. But either it or the fludrocortisone gave me nausea, I thought. Although I suppose that could have been early GP symptoms that everyone was ignoring.

      I should call probably and see what they’d charge. I get some coverage out of network on my insurance. They’ll fight paying any of it though. They’re like that.

      Gotta call the BI-BATH autonomic clinic. If it’s just another tilt test, well, I’m not sure I need that. A lifetime of passing out and a positive tilt table test from 2010 seem like enough to demonstrated that this does HAPPEN.

      • Topamax went generic about 4 or 5 yrs ago. It’s hugely popular with pain management docs, although doesn’t do loads for me as mentioned. The generic is called topiramate and I think it is pricey (if cash), but way less than Topamax. I get side-effects from everything and no nausea from it. I was on 100 mg for yrs (titrated up). It does cause some strange things that go away within a month (pins and needles in your feet and super spacey). Then, on more that 50 mg I would get lost mid-sentence, which is commonly reported, but didn’t feel totally spacey like at first. I do prefer under 50 mg for sure. It does cut your appetite, especially at the higher doses, so that’s not the best for Skinnie Minnies like us.

        Maybe that rings a bell… I think everyone gets that awful pins and needles thing at first (oww!).

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