I've fired Hecox, but what next?

I told my folks last week I wanted to be the one making the decisions about my health. They quickly agreed. So I officially fired Hecox, expressing (a) disagreement w/his Dx, and (b) upset with his near-complete lack of response to my e-mails. Even the folks are rather upset with him about that. They want me to see a dr., even Hain/Cherchi. I’ll probably do just that.

Dad thinks maybe my reaction to a small-plane flight (8/08) was “the first symptom” of an inner-ear problem. I disagree. Small plane + turbulence + history of motion sickness = a stupid idea of mine! I doubt the flight caused anything, but I also don’t think my sickly reaction was symptomatic of anything.

Two other things:

(1) Rocking + VRT: The others want to know why I’m not trying VRT. I’m not sure what to say. I notice that even Hain (his site) doesn’t mention rocking w/regard to MAV. He just says rocking may be “a disturbance in the sensors for linear acceleration, the otoliths,” among other ideas. Has anyone here had success with VRT (or anything else for that matter) for rocking?

(2) I’ve found that not only can I ride in cars and wheelchairs normally, but I can even go for bike rides. The exertion makes me dizzy AFTER the ride’s over, but biking itself feels rather good.

Any remarks, ideas? On any of this?

Hi George,
I too have rocking as my major symptom and also feel almost normal when riding in cars or being pushed in a wheelchair. With regards to your question regarding VRT and rocking I asked my vestibular therapist and he says that there is no VRT that will stop the rocking… only thing is meds. I have been in intense VRT for over a year now and can speak from experience that the therapy has done nothing for my rocking. I started it long before my diagnosis with MAV. The doc who gave me the diagnosis of MAV believes that meds are really the only way to get better. He does not normally prescribe VRT.

Good luck with Hain or whoever you choose to take over your future care.

Lisa

Thanks Lisa.

I just found out that Hain, who’s normally quite booked, had some cancellations, so I got myself in for a follow-up this Thursday. (I’d e-mailed Cherchi just recently to tell him about the worsening trend, and he replied, advising to proceed with the Keppra trial and then follow up with the clinic after 6 weeks, but hey, why not see them anyway? My last visit with them would’ve been in late August, but it was canceled by me. So, we’ll check and see if he still feels the same after seeing the new test results.

On his site, Hain probably forgot to include MAV as one cause of rocking; surely he’s seen MAV’ers who have that!

He suggests (on the “Rocking” page) that VRT is likely helpful, but as you (Lisa) said, this is probably not the case for most people whose rocking is due to MAV.

Might I suggest that you read Dr. Hain’s site on Mal de Debarquement? If you read the symptoms, they match what you have written. I believe that is why I have received a dual diagnosis even though my rocking started while going for a walk. It would be interesting to know how the doctors truly dfferentiate between MAV and MdDS, I have never received a straight answer. Perhaps you will from Hain and Cherchi. I wonder what Dr. Neuman would say about this, I have never heard that he diagnoses MdDS, just MAV.

dizziness-and-balance.com/di … l/mdd.html

Hope you get the answers that you need. I used to be able to ride a bike but now can hardly walk well.

Sal

Hi Sally,

I asked Dr. Newman this exact question as my symptoms could also be MDD in my opinion. His response was that the treatment is the same so it does not really matter what the diagnosis is. He did not think I had MDD since I had no history of travel and I have headaches. I guess for Dr. Newman the discussion between the two diagnoses is academic as he uses the same meds to treat both.

Lisa

Good idea, though it’s complex. I’ve sort of got an inverted form of motion-sickness whereby the only times I feel normal are when I’m moving – except for walking. I know Hain thinks that MDDS may be (though isn’t sure) related to migraine. In a way, one could say that maybe anyone who has rocking in their MAV has MDDS with it. Maybe the idea I put up, above, about basically migraine / MAV manifesting as weird variations of motion sickness, is where the answer is … that motion, or lack thereof, is different for everyone (with MAV) but that the body’s response to it is definitely “out of whack.”

I have horrible rocking when walking. I actually always thought that was a very common symptom of MAV.

Hi George,

— Begin quote from “georgekoch”

I told my folks last week I wanted to be the one making the decisions about my health.

— End quote

Great. No one knows better than yourself by now who you should be seeking help from. Let your parents have their say, take it on board and then you decide what drug and which professional you will be spending your time and money on.

— Begin quote from “georgekoch”

So I officially fired Hecox.

— End quote

Good move I think given the battery of tests only to come up with VN. :roll:

— Begin quote from “georgekoch”

They want me to see a Dr Hain/Cherchi. I’ll probably do just that.

— End quote

Good move. Cherchi is great too according to Molly. He responds very politely and thoughtfully to email.

— Begin quote from “georgekoch”

Small plane + turbulence + history of motion sickness = a stupid idea of mine! I doubt the flight caused anything, but I also don’t think my sickly reaction was symptomatic of anything.

— End quote

Agree. Having a predisposition to motion sickness is simply the hallmark of a migraineur.

— Begin quote from “georgekoch”

Two other things … any remarks, ideas? On any of this?

— End quote

Again, I don’t think the sensations one experiences with this is particularly useful in trying to diagnose anything with accuracy or precision. No two people present with the same symptom set. Some feel better in cars while others do not; some experience rocking and others do not … others get anxiety or light sensitivity while some never experience any of it – but all can be migraineurs.

Best … Scott

George- please let us know how your appt goes. good luck

You can be sure I will, Lisa. By the way, I’d like to add that I appreciate your thoughtful replies (to the wide variety of questions and problems I write about) especially knowing that you are in such an uncomfortable spot yourself. Very kind of you.

Similar thanks also to you, Scott, as well as “MAVNY” Lisa, and the others here. Sure is nice to have people to turn to who actually KNOW how I feel.

no problem, George. We are all here to support one another. good luck at appt.

George

I hop this new path you are taking gives you some answers…this is so frustrating and not having answers makes it even more difficult. best of luck as you move forward.

Timeless