new neuro

My old neurologist left his practice in a huff (he couldn’t even wait a minute and a huff) last Fall (post “run away“).  He sent a kind of rambly letter which left me very little time to get in there and get my record (they weren’t mailing because that would be expensive).  It was a very busy time of year for me at work, so while each day or two I’d remember after getting home from work “crap, I need to call that guy tomorrow and get my record!”, by the next morning I’d forget….or I’d get so blisteringly busy at work that by the time I called (4:30) they were gone for the day.

The recent gastroparesis symptoms have made it clear that I need a different migraine med.  The symptoms get markedly worse after I’ve had a migraine and after I’ve taken the tizanidine this guy prescribed for my (supposedly migraine related) neck pain.  I am not sure how much of the GP- exacerbation is due to the migraine and how much is due to the fioricet I take for them, I think a sizable amount.  Time to look into something else, especially since the fioricet really doesn’t help a ton anyhow.  I do not love the idea of seeing a new doc right now, and filling out the questionnaire for things like “how many days in the last 3 months did you limit your (work, housework, leisure) activities because of a headache?” makes me want to, well scream kind of.  Because for someone like me (and like most of you reading this), (a) I have no fricking social life right now and migraine is only one part of that (b) I get up and going with a BP of 80s over 40s.  Unless I can’t see and am literally so dizzy I can’t walk, I get up and I do things if things need doing.  So unless I am having a massive aura-filled migraine, I do not limit any further than I already do.  But I have a lot of limits.  So how the hell do I fill out this survey, which is not made for someone like this?

Eh.  I guess I’ll leave it blank and ask him.  I kept a headache journal by iPhone app for about a week.  6 days of headaches, several per day on some days.  But how much of that is from low blood pressure, dehydration, over-exertion?

I suspect I am overthinking this.  One thing my former neurologist said to me was “you’re a minimizer.  you minimize your symptoms”.  I’d never have classified myself as that but I thought about how I probably come across in my day to day and I think that this is correct, sort of.  I don’t present to a doc’s office saying “oh my god my migraines are destroying my life!” partly because well so many other things are at this point, and partly because I don’t know which symptom is a migraine symptom and which headache is a migraine headache.  So I’m not a minimizer as much as I am a contextualizer.  If people aren’t willing to consider my context (how many times did you visit the ER in the last three months because of a headache?”  none, because I’ve been in a lot of ERs, they tend to be unhelpful, expensive, and sometimes downright horrible), then yes, I will come across as under-reporting or minimizing.  The same thing happens with pain.  Pain scale, one to 10.  I have stopped contextualizing on this, because I find that it is not how they expect you to report.  If I report pain on MY pain scale, it’d hardly ever get over 4.  But, after being around people who are reporting pain at a 9 and are not fainting, sweating, speaking through gritted teeth, and are able to breath normally, I realized that MY pain scale is perhaps a bit skewed.  Mine is like “ok, if 10 is passing out…” and I don’t think that this is what most people report on, because most of them do not have intimate, recent, recurring knowledge of lots of pain.

In other news, I spoke to my boss yesterday about not being happy about how my accommodation request is being handled, and about communication with her.  That was NOT an easy conversation to have and I am really proud of myself for managing to have it.  Also went for an appointment for a referral for mental health/therapy, which went pretty well.  And later today, I see my primary care, who is going to freak the hell out since I’ve lost another three pounds since I saw him last week.

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  1. Hey D,
    Well, I don’t get migraines, but I can relate to minimizing symptoms. It’s like when someone gets the flu and can’t get out of bed. Oh, the flu–minus EDS–would be a dream. I think we are used to docs getting huffy if we complain too much (so minimize) and then you get to that new normal where you can’t remember life any other way… Stay tuned for an actual post from me that mentions that. As a side note, my newer PM&R doesn’t use the pain scale! Yes! I think he knows it’s too subjective to be of any use. I’d really like to know the pain of those people who put level 10. Lol.

    My last PM&R just left (no huff)–I was sitting in the waiting room for hours waiting to see him and saw him walk out the door! That’s medical care here. He was horrid but starting over with a new doc is so hard. Where to start? I HATE those 10-page forms, too! I think you should just fill out the personal info/insurance part and screw the rest! I keep my meds in a Word.doc since I have so many (most are not for EDS). If the doc doesn’t get why you can’t fill it out, then NEXT.

    Lastly, what I see as the biggest problem for so many of us is that we get shipped out for our various EDS-related issues and none of the docs know what EDS really is and they don’t talk to each other–at least out here as it’s all private practice. If you’re in Baltimore, then no worries. EDS Dreamland. The neuro there will have a GI doc who knows about EDS, if they don’t already know about it, and then they can figure out what’s really going on. I know that migraines/neck pain (not myofascial like mine) are really common–maybe more with HEDS. Hope they’ve looked into cranial instability and all that. Sigh.

    Good luck and pat on the back for talking to your boss…

    • Yeah, my primary care keeps asking me about going to Baltimore…but if they aren’t going to follow me, if it’s just another consult, what good is that going to do? 😦
      Holy cow, this neurologist is a DUD! I’ve nicknamed him “tater tot”, because he’s got the bedside manner of a potato.

  2. I hope your new neuro can get things sorted out for you. Hugs. It is so hard. I hate those surveys’ “where do you hurt?’ I circle the whole damn person. Ummmm everywhere.

  3. Tater tot! Haha. I just tend to call the bad docs schmucks for lack of another word. I’ve always heard bad things about neuros, but I saw a nice one in CA to officially rule out MS. They get the asshole reputation a lot. If I were on the E. Coast, I would go to Baltimore. I know it’s a consult, but maybe one of the docs knows someone in your area to refer you to and then there would be some communication between the docs. I also think it’s a BIG consult with a BIG written report–not some 10 minute thing. I think it’s Dr. Henderson that deals with neurology (neurosurgeon?). I’m fairly certain he’s the one who deals with chiari and cervical instability–got that off Vimeo. Maybe you could get a Dx beyond migraine (like what is behind it as it’s obviously from EDS, Dr. Tater Tot). Well, food for thought–literally. Tater tots sound so good. OMG. I’m freakin’ starving and have a cold bowl of ice in the microwave I have to force myself to eat soon. Anyway, I think of those EDSers who live in Baltimore and get so irked. I mean, the weather would kill me, but imagine having all those docs at your disposal! Sigh…

  4. I remember sharing something some comparative pain scale on Facebook that was so true it was scary. They compared that usual smiley pain scale to that of an EDSers I think it was. The latter was smiles all over – Reminds me of your level 4 pain. Gen is so used to pain she doesn’t react anymore, and when she does her face is like plaster, her eyes get round and the tears pour like rivers on her cheeks… I can’t even start to imagine what that’s like – I mean to live with that pain.

    Changing doctors is awful unless something better is coming along. I hope things will get better with the “potato guy”. Baltimore is where I’m suppose to be taking Gen for her neck issues. The expert is Dr. Fraser Henderson and he’s with the Metropolitan Neurosurgery Group. Not sure how I’m going to manage that financially – and the trip – although I have friends who take care of some things for us because they are very generous.

    Great that you got the courage to speak to your boss – I’m so bad in that Department. 😀


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