Finally -- the visit with Hain

Thurs., I brought an “Rx summary” describing Effexor, Inderal, Diamox. I added a one-page update on my condition, emphasizing my feeling much worse and the rocking sensation that had set in after starting Inderal.

Dr. Hain (asked for him, and got him!) was very sympathetic to the worsening and to my reactions to the drugs. I’d noted: “In typical migraineur fashion, I’m very medicine-sensitive. Symptoms don’t GO AWAY after I discontinue. Probably it just accelerates the natural progression of MAV.”

“All of us were right (and Hecox wasn’t)” department:

  • Closely reading all the tests, esp. the VNG and the CDP, Hain vindicated me: “These are tests of the inner ear and its functioning. Your results are normal – in fact, above-average. You definitely DO NOT have vestibular loss. I agree with your analysis that you do not have (VN).”

“Other news” department:

  • Go figure this one out. Previously, on Frenzel goggles, I’d had a weak right-beating nystagmus. Now it’s become a weak UP-beating nystagmus!

  • I got 4 prescriptions: Serc, Neurontin, Keppra, and Topamax. I’m to try them in that order. We’re starting with the best-tolerated ones (fewest complaints of problems / SE’s). Serc works “about 1/3 of the time”; Neurontin “isn’t the most potent, but almost nobody has any problems with it.”

  • “Dr. Cherchi is more excited about Keppra than I am,” Hain admitted. Said he’s seen some heavy drowsiness and other SE’s, but the Rx was rewritten anyway. Topamax is if all the others fail.

“Curious stuff” department:

Hain found it interesting that Effexor, while increasing general dizziness, actually reduced visual dependence while I was on it. He said it might be worth bringing back into the picture, IF we could combine it with (a) a drug to work on other MAV symptoms, and (b) a drug that could counteract Effexor’s side-effects.

  • Hain wrote an order for a special blood-test – for Hashimoto’s thyroiditis. (Dad added, “His mother’s sister has that.”) We mentioned other blood tests done were “peculiar” but showed no ACTIVE infection.

  • Hain spoke of (because of rocking, I guess) MDDS. I said I’d read up on it and that I’d not been on a boat in 20 years. I mentioned the bad small-plane experience and said, “I think that’s just my tendency for motion sickness. I get airsick at times, and carsick in the backseat of a car, ever since I was little.” He agreed MDDS was out.

In all, a good visit! I feel vindicated, of course. That Hain actually explained WHY the tests disproved inner-ear stuff helped convince Dad I was right. Hain said I’ll know within a week if Serc will help. At $120 for 90 capsules, it better work, I say! Neurontin surprised me as a choice, but Hain was being very attentive to what I said about Rx problems. And, I wasn’t shoved out at the 30-minute mark. It’s nice to be back.

George- so glad your appt went well. please let us know how you do with these medication trials. good luck!

Lisa: Above all else, I think I’m most glad about being “proved right” all along. Well, that, and he had the foresight to give me MULTIPLE Rx’s – much better than having to call back or re-visit every time one fails! That means I have multiple avenues to try.

you sound so much more hopeful, too, which is great. I sure hope one of the meds work. I had tried SERC at the beginning of this when doctors had no idea what was wrong with me. This doc thought it might be helpful and since I had my honeymoon planned in Spain in a few days he said that you can easily get it there. I was able to get it over-the-counter there. It didn’t work, but side effects were minimal. I didn’t realize it is given for MAV…interesting…

Over-the-counter? I had to go to a compounding pharmacy. (Pricey stuff, too!) I am not so sure it was given specifically for MAV, though. I think Hain is trying to see if he can kick out the motion sickness-type complaint I have.

Yes, not over-the-counter here, but in Spain. just walked into a pharmacy and got it. very cool.

George,
It sounds like you had a very successful visit with Dr. Hain and actually got to see him. Now let’s hope that the treatment will work for you. At least you now have choices to move forward with.

Interesting that he totally ruled out MdDS and a good thing for you.

Hopefully you are now on the path to wellness.
Best,
Sally

Hey George,
I am so glad to hear you had a very positive visit with Dr. Hain! It must feel nice to be on the same page with your doc for a change.

I am curious as to his choice of meds though. Hain’s top three are usually Topamax, Effexor (which did not work for you), and verpamil and I was wondering if you could tell us more as to why he chose Serc to start with? Did he diagnose you positively with MAV? Did he think the serc would help your rocking? At what dose are you on?

All the best,
Lisa

Lisa,

— Begin quote from ____

I am so glad to hear you had a very positive visit with Dr. Hain! It must feel nice to be on the same page with your doc for a change.

— End quote

No kidding. More like it’s nice to actually have a doctor who isn’t less knowledgeable (about MAV) than the patient! Dr. Hecox is a good guy, but he just doesn’t see dizzy people every day, whereas Hain and Cherchi have seen and are knowledgeable about all different kinds and causes of dizziness.

— Begin quote from ____

I am curious as to his choice of meds though. Hain’s top three are usually Topamax, Effexor (which did not work for you), and verpamil and I was wondering if you could tell us more as to why he chose Serc to start with? Did he diagnose you positively with MAV? Did he think the serc would help your rocking? At what dose are you on?

— End quote

Hain was near 100% confident about MAV the first time. Now he’s even more sure, if that were possible. (I think the tests just “re-proved” what he already knew.) Verapamil didn’t help. Effexor MAY come back into the picture someday. Topamax is #4 on the list (if Serc, Neurontin and Keppra don’t do it) because it has a higher side-effect probability (and because it can cause word-finding difficulties – and he knows I’m a writer/editor).

Hain chose Serc not necessarily for MAV but (as I said to MAVLisa) because he thinks it has a chance of knocking out the motion-sensitivity problem. I’m not sure if he considers “rocking” a form of motion sensitivity. (There’s no mention of Serc on his site’s pages on “rocking vertigo” and “MDDS.”) He says it works about 1/3 of the time but almost nobody ever has any SE’s from it. The Serc is 16 mg, 3x/day.

One thing I find interesting is that among his choices for being potentially useful in MDDS management, Hain includes Neurontin and Dilantin – both anticonvulsants!

Say, has ANYONE here at MVert ever successfully used Neurontin? I’m not finding many success stories about it. It doesn’t seem like the most useful drug ever developed…

Hey George,

I was really happy to read this post from you. Excellent outcome and I can read between the lines that you are sounding very hopeful again. Everything we have discussed and all that you really knew and felt was correct was right on the mark. The VN dx was a load of tripe from Hecox. He basically didn’t know what else to do with the test results because of his lack of migraine experience and had to settle on something … he has to being the specialist.

Sounds to me like Hain and Cherchi really know there stuff and really gave you a good work up this time. They read your test results and new immediately how to interpret the data. No messing around. I bet to Hain the dx stands out like a sore thumb.

Adam has used Neurontin and gave it the thumbs up while using it. He has since moved on to Zoloft which has replaced Neurontin and Pizotifen. I have not tried it myself but maybe I should although the anticonvulsants that I’ve tried so far went down quite badly for me. But then so have a few of the SSRIs … maybe I never found the right one. Anyway, you have lots of options now so think you’ll hit gold soon.

Your hard work will pay off.

Scott :slight_smile: