"HELP!" (about to be forced back to Dx of VN)

Specific Illnesses & Conditions VM/MAV
1

OK, my head’s going nuts right now.

The autonomic specialist yesterday wouldn’t 100% rule out POTS, so he ordered FULL autonomic testing – tilt-table, deep-breathing, and Valsalva maneuver, plus “QSART” (it measures resting skin temperature, resting sweat output, and stimulated sweat output – nerve fibers, autonomic system’s regulation of sweat glands, etc). The tests are scheduled for OCTOBER 6!

Hecox e-mailed today that, quote, “We are closing in on a diagnosis of vestibular neuritis … secondary to EBV virus infection (the most common cause of neuronitis in adults).”

Hecox still wants me to still get the ENG performed, as well as the autonomic stuff, and then (when he’s “decided”, I guess, that it’s VN) go to get VRT, “the most effective intervention.”

Mom & Dad think this may be POTS, so the doctor yesterday instructed us to try “increasing sodium intake and water intake.” Basically, the treatment for the next 3 days is SALT TABLETS AND WATER!

When speaking with the autonomic guy, they stated that Hain is “out of the loop, as far as we’re concerned,” mostly because (1) his clinic is poor at returning calls or e-mails, (2) they make you feel rushed and all but shove you out the door as soon as your 30 minutes are up – very poor at making patients feel cared about, etc., and (3) Hain’s/Cherchi’s first drug didn’t work and the second made me worse.

WHAT DO I DO?! The one guy that my folks regard as “the god of neurology” is about to shove me back onto a VN diagnosis. The only good that can come of it is VRT, which will either work or make me terrible (thus, practically diagnosing MAV if it does – but the others don’t buy that). If the salt/water treatment fails to work, I’ll being pushed onto Diamox shortly – while I wait for the ENG and autonomic testing.

ALL SAID … my folks are so utterly disillusioned / PO’d with Hain and his practice that they won’t even have me go to his office (in CHICAGO – near me – not MILWAUKEE) for the ENG. Admittedly, his practice’s ways are very poor. The doctors NEED to return e-mails, and they NEED to not be watching the clock the entire time you’re there on follow-ups, or else you just feel like they don’t care much about hearing what you have to say … nor getting you well. But clearly HECOX doesn’t even REALLY consider MAV probable, and I’m supposed to go through a month of waiting just to get autonomic testing?

Even if I can get that shoved aside, and go to VRT, and it doesn’t work, and Hecox decides he’s finally stumped, I don’t know HOW to convince my folks to return to MAV and Hain. I am ABOUT to be pushed on an endless-looking loop of ENG’s, autonomic tests, Diamox, and ultimately, once again, a diagnosis of Vestibular Neuritis, and God Himself probably would have a hard time getting them to let me turn back on Hecox and return to Hain. I WILL DO VRT IF IT GOES SO BAD THAT IT WOULD PROVE MAV TO HAIN OR SOMEONE LIKE HIM, BUT I CANNOT GO BACK ON THE VN-DIAGNOSIS ROUTE! How do I make my case that we are going the wrong way and about to go a lot further down that road?

Anyone, please help!

2

Based on what you wrote, it seems like you believe that it is MAV. I don’t know you or your family dynamic, but you are an adult and this is your decision and your life. I’m sorry if I’m being too blunt. I know that you rely on your parents for emotional support, which is important for this illness. Maybe you can have them read literature on MAV or even look at this site. An ENG cannot hurt to rule out VN, but I’m not sure if the other tests are necessary. I have to say that out of all the docs I saw, Dr. Buchholz really was able to convince me better of this dx. Maybe you and your parents can see him. I know he is located far away from you, and he doesn’t prescribe meds, but at least he can assure you of a diagnosis.Lastly, the fact that you had two unsuccessful medication trials has nothing to do with you not having MAV. It really seems like the docs you are seeing are not at all familiar with this diagnosis. At least if they knew about MAV, they can make a more informed dx.

3

Tendancy towards bluntness myself…

This is your body, your health, your future. My advice comes to you based on years of experience of being talked down to by ER doctors when dealing with my childrens’ asthma. It took growing that maternal set of brass ones and recognizing that these people aren’t gods nor are they in charge of over-seeing to my children’s health. They are HIRED PARTNERS…period. I hired them and though they are trained diagnosticians in their specialty, they aren’t experts on my children nor can they tell me what I see. “I believe you’re heading down the wrong path” is a perfectly acceptable thing to say to your specialist. Be sure you have your information to back up why you think what you think. If he’s not open to listening to you and taking how you feel and your thoughts into consideration, then I’d get a copy of your files before leaving the office and hire someone else who will.

Thank your parents for the years of dedication in caring for you - and that you’d like their support but ultimately, it’s time for you to manage your health care.

clinkclink
My .02

MJ
dx with Unilateral Vestibular Loss July 17th with suspicion of Vestibular Migraine.

4

Hey George,

I have to agree with the others on this one. Clearly your parents only want what is best for your however, you are an adult and it’s your life, your body, your health, and therefore your decision as to what avenues of enquiry and treatment you pursue. Having said that I gather that you are very close to your family and I think still live at home (?), maybe your folks are even footing the medical bills (?) - all of which makes asserting your autonomy that much harder. Notwithstanding that, you are clearly frustrated and not happy with how things are going so you are going to have to find a way to assert yourself.

Good luck!
Vic

5

George,
I know how frustrating and tough this situation can be. I try to explain to my co-workers, friends and family what MAV is and why I’m not better and they think I should get another opinion because the medications aren’t working! At some point you will have to trust your own instincts and make decisions based on what you think is best for your OWN medical care. Really… If your parents are that concerned can you tell them that you would like to keep trialing medications and seeing doctors who specialize in MAV, but that you will TRY the VRT and see if makes a difference in the mean time. That way if it is in fact VN your conditions will improve and then eventually disappear. If not, you will still have ket other options open and all bases covered.

My fist dx was VN. I did VRT for 2 months. I did make slight improvements, but not enough. It in no way worsened my condition though. Who knows… try it and see? That is my philosophy anyway. I’m willing to try anything that may make me feel better.

Sarah

6

Hey George,
I imagine this feels like such a hopeless situation, but I have to agree fully with what the others have written. You must alway question your doc, no matter how impressive they are on paper or word of mouth. Docs are human and cannot know everything. Often, our medical profession is so specialized even in the same discipline that we become narrow minded when we are not comfortable with a diagnosis unfamiliar to us. If you really believe in your heart your doc is going down the wrong path and will only prolong your suffering, then you must take responsibility for your body, your care, and your future. This doc sounds so test happy and I question all these additional tests when he already gave you a diagnosis. The tilt table test is not pleasant and there are other ways to assess your sympathetic nervous system before going to such extreme measures. Please speak up for yourself with your folks. You do an excellent job on the forum and I hope you share your feelings with them too.
Good luck!
Lisa

7

Thanks everyone,

When I read the dreaded words “closing in on a diagnosis of vestibular neuritis” earlier, I just had the worst, panicky flashbacks to all the months of hell I went through before Scott – then Hain – proposed MAV. Boy, I can’t go back to VN again … I’ll be lost for months. You can probably tell why those words just made me flip out!

Now, family-wise, I live with my family, and they’ve offered to help out money-wise if the medical bills really stack up, but so far I’ve footed all the bills and remain quite able to do so.

I asked this question to Scott in an e-mail, but aren’t these two statements correct about VN?
(1) People with VN do worse in car rides, not better, and
(2) VN doesn’t just make you FEEL off-balance, it ACTUALLY IMPAIRS your balance / vestibular system.

Probably what I should do is submit to the ENG (it can rule out vestibular neuritis), and go to VRT (if I get no better or I get worse, I can say that’s practically diagnostic of MAV. (Is that what Dr. Rauch says, or was it someone else?)

I think I need to build a solid case of why it’s not A or B, and couple that with finding some way to convince the folks that Dr. Hain’s knowledge of these disorders needs to override whatever issues (legitimate though they are) exist with how Hain conducts himself and his clinic.

Maybe I should send a letter to Hain, explaining “these are some issues we have with your practice; because of them, my folks pushed me away from you, and I’m about to get shoved back to inner-ear disorder diagnosis” … and effectively ask him to try to help avert disaster via uninformed 2nd doctor.

8

Hey George,

I have to fully agree with what the others have said above re taking the bull by the horns and being decisive about this. Take everyone’s advice into account yes, but you make the call on this, not your parents. I think you already know in your gut that you’re being dragged around down the wrong avenue lately. What do you think is the right thing to do for you?

If you can bare it, you could throw yourself into a solid VRT program to rule this VN thing out once and for all. If you get worse you know what that means; if nothing changes at all it’s unlikely some sort of uncompensated problem but has a central origin.

You have a family history of migraine and epilepsy. That alone is HIGLY suggestive of MAV given your symptoms. Frankly, I cannot believe that Hecox doesn’t take this on board and feel like walking into his office and asking him if he actually reads any literature on this.

(1) People with VN do worse in car rides, not better, and
(2) VN doesn’t just make you FEEL off-balance, it ACTUALLY IMPAIRS your balance / vestibular system.

As I said in the email, I don’t believe how someone feels in a car ride is diagnostic for anything. It’s different for everyone, apart from perhaps MDDS sufferers but I bet you’d find one of those who still feels lousy in a moving car. I actually felt better in a car or bus as long as I wasn’t driving when VN was in full swing. As soon as I had to multitask (drive), it was curtains for me. Both VN and MAV can make you feel off-balance and actually impair balance. There are people who can barely get out of bed when MAV hits hard enough. I know Lisa is having a hard time trying to balance with her current pregnancy due to the ramping up of the migraine (very sorry to hear that Lisa). MAV can mimic just about every dizzy disease out there.

Adam used Keppra and had good results on it. Worth a shot.

Hang in there … Scott

9

Hi George,
One other thought… can you go to another migraine specialist that is familiar with MAV. Why does it have to be Dr. Hain? If this is your diagnosis, then med trials are the next step and any doc familiar with MAV can handle this. There really is no magic doc… not even the great Dr. Hain:-) Since you live near a major city…Chicago, right, it should not be a problem to find a number of docs that quietly treat MAV. I would recommend starting with neurologists that deal with migraine, see if you can email them and ask if they are familiar with MAV. MAV by someone familiar with it can be diagnosed based on history and it does sound like your history is pointing you in that direction.
What do you think?
Lisa

10

I agree with, Lisa. Maybe if another doc diagnoses you, your parents would be more likely to buy the dx. Also, you sound so unhappy about Dr. Hain’s office, etc. I, however, would not expect another doc to spend more than 30min with you at follow-up. That just doesn’t sound too feasible nowadays. I actually think that is a nice amount of time for follow-ups. Docs usually see me longer for the initial, as my story is so darn long. I hope this comment doesn’t offend in anyway. I know you have differing thoughts. That being said, there are a lot of other things to be desired with Dr. Hain’s office. Definitely find another doc. He is not the only fish in the sea. Good idea to pursue ENG and VRT. Cannot hurt. I think maybe Claudia recommended a headache clinic in chicago - maybe diamond?

11

I think that’s a good idea too Lisa. Get a new angle on this from someone else who actually understands what MAV is. This will sort out the parents issue and also give you a chance to find another doc who you feel is more in line with how you would like to be treated. It would be great if you could see Howie’s doc in NY. Dr Newman sounds like a really smart and caring doc. The guy even runs info evenings on this junk. I bet he’d have it all nailed down with you in 15 minutes. Is a flight to NYC out of the question if there’s nothing local?

Scott

12

Hey Scott,
For the record… Dr. Newman is my doc too:-) lol… not just Howie’s doc. And yes, he is very kind and caring…
Hope you are doing a little better.
Warmest,
Lisa

13

Hi Geoerge,

Just read this thread as haven’t been on the board for a few days. Am very symptomatic presently so forgive me if this isn’t as clear as it might be otherwise. I agree with what all the others have said. I also wanted to say that although we have a national health service in England, I have twice paid to see top specialists in a field. Once for MAV and once for an ongoing stomach issue. Something that was common to both of them was that they were pressured for time and my visit with each of them was very speedy, I definitely got the sense that they were clock watching. They are both in demand and clearly eager to get on to their next patient. Was I irritated by this, yes, of course, their services didn’t come cheap. However the quality and the brilliance of their diagnostic abilities was unquestionable. The stomach doctor ordered tests, but based on a brief description of my symptoms he told me what he suspected and what he said proved to be spot on. the neurologist, in our short time in his office, gave me one of the best explanations of what was happening to me that I’ve ever had.

These doctors specialise, they see hundreds of patients like us every day. What seems complex and difficult to us and the family and friends around us is often as clear and obvious to them as the fact that the grass is green. That’s what you’re paying for - their ability to see clearly what is complex to those less specialised, as annoying as it can be that they do this quickly and then move on, it is also strangely reassuring. They know that once you have a MAV diagnosis the answer is drugs and finding the right one can be a long road. They can discuss the issue with you till they are blue in the face but ultimately it won’t change anything, it is the drugs that will do that. Yes the people on the front desk shouldn’t be rude, yes it would be great if they spent more time with you, but ultimately it’s their diagnosis that is the really important thing.

Although I agree that a diagnosis from another doctor would help with getting your parents on board with a MAV diagnosis, I am very mindful that you are spending your hard earned money on these visits and tests. And let’s be honest, having to work with MAV (often not pleasant) makes that hard earned money all the more precious. Do you really need to see someone else when you already have a diagnosis from Hain? When you first said you were seeing Hecox I thought well, who knows, there is a history of epilepsy in your family, maybe he will throw up something that has been missed. Now he has merely given you a VN diagnosis, something Hain is all too familiar with and has discounted, I do think it is a diagnostic step backwards. It seems, in your heart, you also know this.

I wonder if it would be easier to simply be bold with your parents? To tell them you understand their feelings come from a place of love and interest in your well being, but it’s your body and ultimately you have to decide what’s best for you.

H

14

I dont understand. There are diagnostic tests to exclude VN aren’t they? I mean quite precise tests as well???

15

Hannah,
I agree completely with what you wrote and just wanted to state the obvious that a doctor who has a better bedside manner is no more likely to get us better faster or figure out the correct med with MAV on the first try. Yes, in an ideal world, all docs would spend tons of time with us, hold our hands through this devastating illness, be available 24/7, and be kind. But as you said, once the doc knows the diagnosis, with MAV, it’s just a matter of trialing these meds and lucking out. I have never met Dr. Hain and cannot personally comment on his bedside manner but at least with George and his family, it left a bit to be desired, and clearly turned them off. I also assume that Dr. Hain is quite overwhelmed with his patient load and may not have the time to devote that some patients may need. That being said, if it is affordable, it may make sense to be with a doctor who has a better bedside manner and is able to devote the time to his/her patients, but of course also with a solid understanding of MAV and it’s treatement. Since each minute of every day can be a struggle, there is something calming to know our doc is available to us with a caring ear. But, yes you are right in what you wrote and the most direct route would be to stick with Dr. Hain as he knows the history already and is very familiar with MAV.
Lisa

16

Hannah and Lisa- your posts made me think. I always have a list of many questions for MAV docs, and their answers are usually that there are no definite answers. That is frustrating, but it is very true. There are just no definite answers to so many aspects of this darn illness. What is really important and the major key to getting better is finding the correct med, which could take some time. I think I have to start letting go regarding all the questions I have, as sadly there are just no definite answers. I sure hope that we all find the correct treatment for us soon.