Here Come the Tests; Doctor's Notes

Well, now that I’ve already posted my post-EEG diatribe, here’s what’s coming soon:

  • An appointment with one Dr. Alexandru Barboi, a neurologist. Specialty: autonomic disorders. Hecox says an autonomic-nervous-system disorder can’t yet be ruled out.
  • A tilt-table test for POTS.
  • An ENG.
  • Additional bloodwork because some initial results showed VERY high antibody levels.

And straight from Hecox’s notes, here are some of his current hypotheses:

  • “The participation early on of the autonomics in terms of elevated sense of temperature, sweating, without a true core temperature elevation as well as extensive palpitations suggests there was an autonomic component to the disorder.”
    [Note: I did complain at times of feeling moderately feverish on the forehead, only to have an average or low temperature]

  • “The patient continues to show a paroxysmal component to his current symptomatology.”

  • “…an undescribed or undetected infection seems unlikely at this point in time, though it could certainly be a post-infectious disorder. … We will be administering additional immunologic tests related to prior infections by a mycoplasma, herpes and EB virus. All of these can both produce and mimic cranial neuropathies.”

  • “This could represent a central disorder … if so, it would be localized to the left parietal lobe with a posterior involvement as well as an anterior occipital involvement. This would be … relatively rare, but has been described in the past.”

And one last very interesting comment:
“The diagnosis of vertigo-associated migraine is still tenable.”

The high antibody results are interesting. This could point to an autoimmune disease. Mind you, I had high ANA results and when they narrowed it down, it was autoimmune thyroid but they dont think that accounts for my symptoms. I have a bit of other autoimmune stuff going on as well.

Christine

Hi George,

  • “This could represent a central disorder … if so, it would be localized to the left parietal lobe with a posterior involvement as well as an anterior occipital involvement. This would be … relatively rare, but has been described in the past.”

Sounds like a convoluted way of simply saying “migraine” to me. I can’t believe the stuff he’s coming up with. I sure hope it’s worth it in the end. Well, I guess if it ends up being none of these things he’s looking for and he finally settles on MAV, you’ll at least have no doubt it’s MAV.

Good luck and hope it’s not all taking too much out of you.

Scott

Is this the way he decscribes it to you, or are you somehow reading his personal notes? I wouldn’t really know what to make of such notes, but at least he seems very thorough (and smart), which can’t be bad I guess. He obviously means something other than migraine with his techinical talk, or he wouldn’t have mentioned migraine as a separate possibility.

I’m sure it cannot hurt to get all those tests, but it will probably cause much unneeded anxiety. I keep on thinking of my appointment with Dr. buchholtz. Although arrogant, he was very smart and knew a whole lot about MAV. He would be so angry that your doc is sending you for all these tests, when it is clearly migraine. I just have internalized everything that he said at our appointments and I tend to believe him. I see it with myself and time after time - people getting test after test for no reason, other than the doc is not at all familiar with MAV. I’m sorry to be so down on your doc. Just my thoughts.

Perhaps this doctor has a method to his madness which we may not understand . I know all of us here have been given the diagnosis of Mav and have trusted that the doctor who told us that is correct. Although there is always a chance that there may be other issues going on that we are not aware of …this doctor sounds like he is ruling out all other issues he may feel could be applicable.

I guess George will have to decide whether or not he feels comfortable with his care or whether or not to move on to someone else…we have to feel comfortable and trust our doctors.

It is very strange to me that these doctors all use different approaches to treating this condition when most of them are supposed to be experts in their field.

Hopefully George you will find a resolution to your issues as I know the frustration that it can bring. Please keep us posted and may you find comfort in knowing that there are those you can feel your pain.

These are the doctor’s clinic notes, same as what he sent back to my primary-care doctor; he (Hecox) gave me a copy.

I don’t know what to think any more.

My “thing”, whether MAV or not, is becoming pretty unbearable. Things get worse and worse.

Obviously 3 of the 4 “top MAV meds” (in Dr. Hain’s list) have failed. Verapamil = nothing; Effexor = awful; Inderal = awful. Still waiting to try an anticonvulsant, Keppra. But no, I have to wait for a tilt-table test and an ENG. In the meantime, it looks like I’ll be shoved onto Diamox (yes, still) next. If all of these come back negative I intend to turn to my parents and say “You know what, Hecox has had his chance. I’m starting the Keppra and going back to Hain.”

Autoimmune disease? POTS? Lingering post-infection? (Endocrine, as some have suggested?) Really? Do any of these get worse with time if not treated? (That’s not a rhetorical question.) When this began in January, I didn’t have the constant rocking feeling, and things like computer use and 5-mg Valium were both good “helps.” So was sitting in a dark room for a few minutes. That time has since passed. Those don’t help any longer.

There’ll be no more posturing from me about this whole “holding to hope” thing I once hypocritically proclaimed, as though I was actually strong enough of a person to do it myself. “Hope” is now to me a meaningless word that means what it sounds like: You delude yourself with the illusion, or “hope,” that somehow, against all logic or reason, things will just magically get better at some point, even though there’s no reason or evidence to suggest they should. “Hope” is a nicer way of saying “wishful thinking.”

Hi George,
I am sorry you feel this way. I too am suffering 24/7 and lose hope daily… but, the fact that we are here, on this forum, reaching out to people shows that we have some hope in us. Hang in there. I have been sick for 2 years and counting and I know how hard it is to be hopeful. But, stay here with us, and we will do our best to get you through.

Lisa

George - I’m sorry you’re feeling so hopeless today. I can relate 100%, as I feel hopeless every single day. However, the more rational side of me wants to tell you that the alternative to having hope is more grim them having some false hope. I don’t think we are magically going to get better. I believe what I hope for is a treatment that will help me. I know you took several meds, but remember that you were unable to get to a therapeutic dose on most, so that doesn’t mean that they failed as MAV meds for you, and doesn’t refute your diagnosis. You just weren’t able to tolerate, which many of us can relate. This illness is so very cruel and provokes such sadness and anxiety, even in the strongest of people. Just know you have support amongst us on the forum.

Lisa,
That was so well-stated. Thank you for sharing this with George and all of us…
Be well,
Lisa

oh thanks, Lisa. Didn’t know I was making any sense these days. Just need to practice what I preach.

George,

I understand how you are feeling…it’s very frustrating. While I don’t mean to underestimate your suffering, you haven’t had this a year yet and there are many more meds to try. I wont bullshit you; this will be hard and you may not improve for a long time. You have to keep the faith though mate as being negative makes it all worse. I’m heading into my fifth year of this shit and I think the only one med or natural recovery sorted me out a few back, when I was in remission.

You will get better chap. There is no way to go but forward I’m afraid.

Luke

Hi George,

I remember going through test after test just as you are doing right now. I feel for you…it’s tough when there are no straight answers. I just wanted to comment on the tilt-table test for POTS. My first neurologist’s nurse-practictioner ordered this test for me after seeing me for a visit. This was way before I had heard of MAV.

I was very nervous the day of the test and my tilt-table test actually came back positive…meaning my pulse went up like 15-20 beats when they tilted the table. The nurse-practioner called me when she got the results and said I probably had POTS and that I needed to add more salt to my diet and to think maybe about wearing those tight stockings around my calves (forget what they are called). She also said that sometimes, patients with POTS take beta-blockers to help with symptoms. I was so confused…what?? More salt? After freaking out for a week (constantly checking my pulse), I talked to my neurologist, not the nurse practitioner, and she told me that most of her patients that have migraine issues test positive on the tilt table test. I can’t recall the reasons she gave me, but she said it was common for it to happen. She assured me that I was probably fine and that when patients have a serious case of POTS, they are literally passing out all the time b/c their blood pressure and pulse are both all out of whack. In my case, I could have done without the tilt-table test. When I told my new doctor (neuro-otologist) about having the test, he just raised his eyebrow and shook his head.

I just wanted to let you know this. If your tilt-table test does come back positive…it could be POTS or it could be migraine or it could be (as in my case) … anxiety. I hope that through the course of having the testing done you get some answers and peace of mind.

Best wishes! Colleen

Hi George,

I think if we look at this from a purely scientific and logical-rational point of view (forgetting “hope” etc for now) – even a skeptical one (I am VERY skeptical person; without sufficient plausability or evidence I don’t buy into anything these days), we can say with a large degree of confidence that this is very treatable. Some of us are harder cases to treat and may only respond to one drug in 20, but there is almost always one that works for everyone. I’m a good example: almost all of my drug trials have failed. TONS of drugs with no effect or made me feel worse. BUT, there are two SSRIs that make this bearable for me and almost go away –- Cipramil or Paxil. I’m on too low a dose of Paxil right now to fully comment but I can tolerate it and my mood is good right now despite the jet-lag hell.

Hannah too cannot handle any of the migraine drugs except propranolol. All of them were horrendous but this particular beta blocker does the trick and she can work and function on it.

I think your hunch about Keppra might be the right one given the family history of epilepsy. Maybe you’re just wired that way and it will do the job.

How about adopting a systematic approach to this and go through all the main meds one-by-one until you hit the nail on the head.

One last thing: what is your level of depression and/or anxiety like right now? If you are significantly depressed (and who wouldn’t be with this junk) it will likely be contributing to or causing your current worsening symptoms.

Scott