This is another long one, folks. Here’s the TL;DR summary:

  • I’m still having headaches; today is day 162. The MRI at least confirms that the pain is real.
  • I have been offered no relief for the pain.
  • Doctors should treat the patient, not the results of this or that specific test while throwing everything else into someone else’s court.
  • I’m more likely to follow the guidance of the dysautonomia specialist than the neurologist who doesn’t listen.
  • I do not have a brain tumor.

I have mixed feelings about this follow-up consultation with the neurologist. Actually, no. My feelings aren’t mixed. I’m disappointed and frustrated, and I feel like I’ve been left in the lurch.

The MRI revealed that—hey!—I really am having migraine headaches. The neurologist acknowledged the scarring on my brain and attributed it to either trauma from the injury I had in 1989 when I was punched in the back of the head, or to the migraines. I’m beginning to think that the former caused the latter since I didn’t have a problem with headaches previously.

Those scans also helped to rule out multiple sclerosis, which I hadn’t realized was under serious consideration. So that’s good news.

The autonomic testing results apparently came back “completely normal.” When I expressed surprise, the neurologist added that my heart rate had fluctuated here and that my blood pressure had dropped there, but it was nothing dramatic enough to warrant the diagnosis of dysautonomia. What I should have pointed out was that the results she cited were trending toward dysautonomia but just didn’t meet somebody’s threshold for the diagnosis.

(Background: I was diagnosed with dysautonomia in 1997 and again in 2013. It fits all of my symptoms and my medical/life history. When I first saw the neurologist in March of this year in regards to the daily headaches, she questioned the dysautonomia diagnosis. She said the testing wasn’t comprehensive enough for her, though I was surprised there was no echocardiogram included in this latest battery of tests. Even though I’d been seen at the Autonomic Disorders/MVP Center in Alabama—real specialists in the condition— the neurologist said she thought I’d “been sold a bill of goods.” Those were her words.)

Anyway, I’m not arguing for or against any particular diagnosis. I just want the RIGHT diagnosis, and I want to feel better.

The neurologist is sticking with migraine and anxiety as the root causes for my discomfort, but from my conversation with her I don’t think she’s looking at the big picture. For instance, she tried to prescribe an anti-depressant for my “depressive symptoms.” I stopped her and asked her to explain what she meant by that.

“Well, you were on sertraline for years,” she said.

“Yes, that was prescribed to me by the doctor at the autonomic clinic, but not for depression. It was for dysautonomia.”

“Which you don’t have!” she said with a dismissive smile. And then she never mentioned depressive symptoms, or any prescription of anti-depressants, again. She just dropped it.

Then she talked about my blood pressure medication—again, I was prescribed a beta blocker for the cardiac symptoms of dysautonomia. I have never had high blood pressure; instead, my BP has always been on the low side. If she made the assumption that the sertraline was for depression and the atenolol was for high blood pressure—even though I’d given her a written explanation to the contrary in my application forms and a verbal explanation of the same during the previous visit—then what else was she making inaccurate assumptions about? How closely was she examining (and maintaining) her own paperwork?

But I didn’t get into this with her. I had a killer headache during this appointment, and I had gone over all of this with her before. Either she hadn’t been paying attention, or she was choosing not to. Given that she spent about half of the time typing on her laptop, I’m not surprised that listening may not be her strong suit.

When I asked whether some of the other symptoms I’ve struggled with—e.g., difficulty with extreme heat and cold (a hallmark of dysautonomia)—might also be tied to her diagnosis of anxiety, the neurologist admitted that I’m having additional symptoms that she doesn’t know what to do with.

“I see no neurological basis for those symptoms,” she said. And that was it. My experience, previous test results, and medical history were not being considered as a whole. It seemed she was working solely from the MRI scans, the most recent autonomic data, and misassumptions about medicines I had been on. I was being reviewed only in the smaller pieces that could be conveniently fit into this or that box—treating the test results, not the patient.

Back in the real world, I have a full, two-column page in my bullet journal devoted to the symptoms I’ve been experiencing. I won’t bore you with the full list, but I do have a hard time understanding how things like sensitivity to altitude, poor circulation, and TMJ would be caused by anxiety. It also doesn’t explain how even though I hike fifty minutes every day (read: I’m not out of shape), I still start huffing and feeling short of breath whenever I climb a flight of stairs or climb into bed.

The neurologist wants to put me on buspar for anxiety. I told her in the office there’s a good chance I won’t take it, and after looking it up online I think I’ll stick with that stance. I don’t want any more prescriptions right now. My system is very sensitive, and every drug that has been prescribed for me has given me side effects that were worse than any benefit. I’m off all prescriptions right now and am still dealing with some withdrawal from the ones I’d been on for years.

I do feel better after going off of the medications. I don’t feel completely cured, just less bad. Some of the dysautonomia symptoms have returned now that they are no longer being masked—most notably the cardiac stuff (e.g., tachycardia, palpitations) and IBS. It was never intended that I would stay on the meds long-term. They were prescribed to help me get to a place where I was feeling strong enough to establish good health habits which themselves would help alleviate the impact of dysautonomia—things like regular exercise and getting enough restful sleep, which are quite difficult when you’re honestly having trouble even standing up for more than a minute or two. But getting back to the Alabama clinic for a follow-up appointment proved a challenge, and I ended up on the prescriptions longer than necessary.

The neurologist has asked me to keep a headache diary. I’ve been tracking other symptoms for years, so this isn’t a big deal. I did ask for guidance on what specifically she wanted me to track, and I’m kind of surprised I wasn’t referred to a template or checklist or something to follow. Granted, the office’s internet crashed toward the end of my appointment and there was a fair amount of frustration and concern in the air about accessing records and submitting electronic prescriptions. Maybe the doctor’s notes—when I receive them via postal mail, since they couldn’t print anything for me at the office—will give guidelines to follow for a headache diary. But the lack of at least a handout or a suggested website on this seems odd to me. What’s the point of asking a patient to keep a record of symptoms without any real guidance on what exactly she’s supposed to track, and how? I mean, if the patient does it wrong or if her record-keeping is incomplete then it’s a waste of time for everyone.

However, my internet is not down and I know how to use Google. I found a great headache diary template on the very first try.

I asked if there was anything else I could be doing, behavior-wise, to help. I had to ask this question; this information was not forthcoming. I mentioned that I was getting back to daily meditation. The neurologist looked up from her laptop and said, “Exercise thirty minutes every day.” I mentioned that I’m already hiking for fifty minutes each morning. “Oh,” she said. “Then you’ll all set.” And she went back to typing on her keyboard.

The neurologist has referred me back to my GP to deal with the anxiety. She wants me back in her office in three months to check in on the migraines and has held out the possibility of repeated dysautonomia testing down the road if the “other symptoms” don’t resolve. I’m not sure how or why they would magically resolve on their own, given that I’ve been experiencing them my entire life. (Autonomic testing is functional: it gives only a snapshot of what’s happening in that room during that window of time. My first and third echocardiograms showed mitral valve prolapse, but the second one didn’t. The first tilt table test showed dysautonomia, but apparently the second one didn’t.)

But it wasn’t until much later that I realized that something mightily important had not happened in this appointment. I was telling a friend about how the consultation had gone, and she asked, “Wait a minute. So what exactly is being done about your headache pain?”

Nothing. No pain medication was prescribed. No behavioral or lifestyle changes were advised. No pain-relieving strategy was offered.

So it’s doubtful I’ll schedule that follow-up appointment. I’ll talk to my GP about all of this and see if we can find a different neurologist.

Last night, I was disheartened but not surprised to discover via online reviews how many other patients have been frustrated and put off by this particular neurologist. My own GP, however, is a superstar, as is the specialist who saw me in Alabama.

I’m not averse to a diagnosis of anxiety. I know that’s been in the mix for a good while now. I’m not sure I buy the diagnosis of “just anxiety,” though. I still have many of the main symptoms of dysautonomia (e.g., mitral valve prolapse, exercise intolerance, IBS, GERD, palpitations, tachycardia, fatigue, shortness of breath, and the like), and only a fraction of these might be related to anxiety. Plus, anxiety itself is often a symptom of dysautonomia.

Considering that Dr. Phillip Watkins—one of THE experts on dysautonomia—was the person who examined and diagnosed me at the Alabama Clinic, I think I’m more predisposed to rely on his guidance—unless or until someone comes up with a better and more exact explanation for what’s going on with me. He, too, had noted that my autonomic test results weren’t off the charts with giant red arrows, but that they were headed in the direction of a dysautonomia diagnosis and that my symptoms and medical history provided the rest of the roadmap to get there—treating the patient, not the test results. However, Dr. Watkins retired very recently. Otherwise, I think I might have put myself on the first plane back to Birmingham.

I’ve been on this treadmill of diagnosis-misdiagnosis-rediagnosis for more than 25 years now. That rollercoaster itself could be the subject of a lengthy and rather complicated book. All of it has simply proven to me that modern medicine is not an exact science.

But still, I just want to feel better, you know? Given that no one is more of an expert on my experience in this skin than I am, and that I’m a decently skilled researcher in my own right (something even my GP recognizes), maybe my best bet is to follow my own guidance on this. I don’t yet have a strategy for dealing with the daily/chronic headaches, but it seems I’m okay at managing the other symptoms. Management, not cure, of course.

I’ll stick with what has been working—daily exercise, consistent and conscientious hydration, keeping regular waking and sleeping hours, tracking my symptoms, monitoring my diet, avoiding caffeine, and making smart choices based on my energy levels and how I feel in the moment. And I’ll experiment—different kinds of yoga, time of day and duration for meditation, aromatherapy for headache pain, and similar. I have a good GP with whom I have a good relationship, and she’s expressed a willingness to work with me on all of this. That itself is gold.

And who knows? Maybe the sudden daily headaches were my body’s way of asking me to get off the meds—though I’m off of everything now, and am still in pain. Maybe it’s part of my body’s hormonal transition into menopause (again, another long and involved discussion). Maybe it’s an invitation to become more mindful in my daily life, and to rely more upon inner guidance than external opinion.

At least I know it’s not a brain tumor. So there’s that.

some thoughts following the big reveal at the neurologist’s office

7 thoughts on “some thoughts following the big reveal at the neurologist’s office

  • 30 April 2015 at 09:25
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    I’d like to punch that neurologist if you don’t mind. <3

    Reply
  • 23 July 2015 at 21:05
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    Hey Jennifer,

    I can’t decide if I’m discouraged or encouraged by your stuggle. 🙂

    I was searching around for info regarding dysautonomia in the Portland area and I found your blog.

    I just left my cardiologist this afternoon with a potential diagnosis of POTS dysautonomia, and I don’t know where to go from here. He was not very helpful, he recommended an Echo but there is no indication of any anatomical problems. He basically just told me to take salt tabs and drink lots of water, and since I’m young, hopefully it will go away…

    Do you have any advice on where I should turn next? I just don’t even know where to go.

    Thanks!

    Reply
    • 24 July 2015 at 08:12
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      Melissa:

      I’m sorry to hear about your experience with diagnosis. I remember when I first heard the words “mitral valve prolapse” back in 1997. I freaked out a little, convinced I now had a heart condition. Even my GP at the time didn’t really understand the implications. But with some research and making connections with others, I was able to find out more and learn to take better care of myself.

      Here are a few suggestions for you:

      If you’re on Facebook, you might want to join the Mitral Valve Prolapse Syndrome/Dysautonomia support group. It’s a closed group, but you can request membership. This is a great forum for asking questions, sharing information, venting when necessary, and celebrating your successes. You can find the group here: https://www.facebook.com/groups/263939506962833/

      If you don’t already have a copy of The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide, by James F. Durante, Cheryl L. Durante, and John G. Furiasse, I highly recommend you pick one up. I’ve had luck finding used copies at Powells. This guide makes reassuring sense of what can at first feel like a quite scary diagnosis, and I’ve also found it helpful to give copies of this book to my family members and even my GP so they can all have a better understanding of MVPS/Dys and what it’s like to live every day with this.

      Both of these will help you make a good start. And, yes, drinking a lot of water does make a difference — because people with dysautonomia typically have about 85% of normal blood volume. The rule I follow on this is to drink a minimum of 60 ounces of water (or other clear, non-caffeinated fluids) *OR* one ounce per every degree Fahrenheit of outdoor temperature — WHICHEVER IS GREATER. So, for example, if the high temperature is 47 F, I drink at least 60 ounces of fluids; if it’s 85 F, my minimum is 85 ounces.

      Aerobic exercise is also good, but ramping up on this can be difficult since our hearts want to race at the slightest provocation and because we become easily short of breath. So, if you’re not already exercising, start slowly but keep with it. I’ve found walking (plus power-walking and hiking) to be a great form of exercise. When I’m feeling really sick — when I can barely remain upright or reliably put one foot in front of the other — I still shoot for about 150 minutes of aerobic activity each week.

      And . . . Feel free to email me. I don’t pretend to have all the answers, but I can at least offer a sympathetic ear.

      Mostly, though, know that this is not the end of the world. It is possible to live and even thrive with MVPS/Dys.

      Reply
    • 8 October 2015 at 13:08
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      Try getting into Dr. Arden at St. Vincents. She’s a POTS cardiologist that has POTS herself due to chemo. She has me on saline infusions, they are a life saver.

      Just a heads up though, she is moving her practice to eastern Oregon. She’s planning to publish her work on POTS.

      Hope she can help,
      Diane

      Reply
      • 8 October 2015 at 13:13
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        Sorry, my reply was to help Melissa. I am in the Portland Oregon area.

        Other drs:
        Dr Grunkemeier is a Gastro who is somewhat familiar with dysautonomia. I am seeing a new neurologist at the MS clinic at St Vincents, if I discover a good one I will post it.

        Diane

        Reply
      • 12 October 2015 at 11:40
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        Diane: I’ve been on Dr. Arden’s waiting list for about a year. I would love to be able to get in to see her. Your message is a good reminder to me to call to make sure they still have my information on file. I’ll also take a look at Dr. Grunkemeier. Thanks for the recs!

        Reply

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