My appt with Hain!

So I made the mission from Argentina to Chicago to see Hain and I think it was worth it to a certain degree.

Hain & Cherchi believe I may have a mix of Mal de Debarquement ( because my sx improve when driving) and Migraine.

He found it strange that Pizotifen didnt work for a second time when I tried it again. Its not used that much in the US, so hes not that familair with it.

I didnt really learn anything I didnt know, but it was good to get a second opinion form 2 doctors whoh genuinely understand this disorder, without me having to suggest the possibility of migraine causing my sx.

So its back on the drug bandwagon for me. I’m going to give Effexor a good go again on 37.5mg and then it will be Topamax.

He has also prescribed me Klonopin to use ‘now and again’ for the rocking. I will see if it helps.

Anyhow, there you go - now its back to trying to get the beast under control.

Luke

— Begin quote from “Dizzyrascal”

So I made the mission from Argentina to Chicago to see Hain and I think it was worth it to a certain degree.

Hain & Cherchi believe I may have a mix of Mal de Debarquement ( because my sx improve when driving) and Migraine.

He found it strange that Pizotifen didnt work for a second time when I tried it again. Its not used that much in the US, so hes not that familair with it.

I didnt really learn anything I didnt know, but it was good to get a second opinion form 2 doctors whoh genuinely understand this disorder, without me having to suggest the possibility of migraine causing my sx.

So its back on the drug bandwagon for me. I’m going to give Effexor a good go again on 37.5mg and then it will be Topamax.

He has also prescribed me Klonopin to use ‘now and again’ for the rocking. I will see if it helps.

Anyhow, there you go - now its back to trying to get the beast under control.

Luke

— End quote

Luke ,

I am curious did they offer you any other alternates to medication or even discuss that with you.

I know you have been down the medication route before and hopefully you can find something that will do the trick for you but do they recommend any other changes other than just the meds.

Hi Luke, sounds like a fairly positive visit. I went through Effexor and now making a second go at Topamax, starting very low (15 mg). The Klonopin “now and again” is interesting. I thought Klonopin was unlike some of the other Benzos (xanax, ativan, valium) in that it needed to be taken daily to be effective? The only reason that I ask is that I tried it and it helped me sleep and calm some anxiety but otherwise made me tired during the day too, so it I could use it every so often (like I do with ativan) it may still give me the benefit of a sleep aid without the daytime issues…interesting. Good luck with Effexor! Ben

Hey Luke,
Thanks for sharing about your visit with Dr. Hain. I wish you the best of luck with Effexor! I am curious as to Hain diagnosing you with MDD when you told him you are better in moving cars. Was this the only reason for him thinking you had MDD on top of MAV or is there something else in your history? I ask because I am fine in moving cars (I actually feel best in them—no rocking or dizziness) and I think other members of the forum have also stated that they feel okay in cars. My doc never mentioned MDD because I have no history of travel so I was wondering if you could elaborate on Hain’s discussion with regarding MDD.
Thanks a bunch!
Lisa

hi lisa

i think he was just guessing at the mdd theory. but he did say it was the fact that i felt bettervin motion pointed to a slight mdd issue. he said most peeps with vestibular deficits find it impossible to drive, so it all points to a slight bit of mdd. also my relapwe happened as a result of me travelling as a car passenger, this and the fact i got carsick as a kid made him come to the dx.

hope this helps

luke

I have been told by my docs and readings that hx of car sickness as a child fits the MAV profile. wish this illness had some direct answers. a manual would be nice :slight_smile:

My doctors, some at MEEI, also say that feeling better in the car points to MdDS with my MAV component. Frankly, they don’t know what to treat. Does Dr. Hain think the Effexor will help both MAV and MdDS? I don’t think I have the courage to try it since nothing much has helped at this point.

Wish you well with your med trials.
Sally

I too feel better in a moving car! I find it funny after all these years that I can actually go for a ride and not get sick. I don’t trust myself driving though, what if?? I hope things work out for you Luke. Now off to find out what mdd is.

Tammy,

MDD in this case is Mal de Debarquement syndrome not Major Depressive Disorder.
Sal

Hey Luke,

Sounds like an interesting appt. Love how you were sending updates from the waiting room! Were you on an iphone? :wink: So the whole MDD thing was unexpected eh? For what it’s worth I too also feel better in moving cars and buses but not if I’m the driver if I happen to be symptomatic. When I was first really ill with VN, the only place I had any peace was riding on a bus. I’d often make a joke that I’d happily spend the rest of my life riding on buses from 9-5 just to feel normal. It was a great distraction. I’m not convinced that this means any MDD however. Many here feel better in a moving vehicle and I wonder if for most that’s just something that happens when you’re dizzy?

Lisa – Rauch says what you mentioned in his MAV video, that migraineurs more likely suffered car sickness as kids and it can still happen as an adult. This applies to me.

Hope the meds pan out Luke. Did you already give Effexor a shot in Thailand? This is a different dosing at 37.5 mg right?

Cheers amigo … Scott 8)

Luke,
Thanks so much for keeping us updated in real time. So great of you! And thank you for your response.

Scott— I too feel almost normal in a car. But, the second it stops and I get out, I am sadly reminded of my symptoms. It’s such a tease. Maybe I can be a New York City cab driver… they are always in motion and only make very quick stops to pick up and drop off people…hmmm… :smiley:

Hey pal

Yeh I was on an Archos 7 Internet Media Tablet - the americans here keep asking me what it is! Being a brit I have found it really hard to be understood here - people look at me like I’m from Afghanistan when I ask for things. But its also quite funny when they say ‘‘I LOVE your english accent’’ - gee I should stay here and try and pick some chicks!! Ha!

Anyhow, I think the MDD theory is just hearsay, but who knows he is the dizzy doctor so I guess you have to take it into consideration.

I’m gonna buy Effexor back home, because I get my pants pulled down over here if I buy it. Got some Topa with me so its a bit of Dinner, nice glass of water and a hit of Topa for me tonight…yummy.

Cheers

Luke

Luke - so nice to see that you still have your sense of humor!! I like it!

— Begin quote from “Dizzyrascal”

But its also quite funny when they say ‘‘I LOVE your english accent’’ - gee I should stay here and try and pick some chicks!! Ha! … Got some Topa with me so its a bit of Dinner, nice glass of water and a hit of Topa for me tonight…

— End quote

Mate – that would make for a great date! Just tell her this is the way it’s done in the UK. :lol:

Just to clear things up here. Some docs differ between mal de debarquement and mal de debarquement LIKE syndrome (with different name; one doc calls the second group “pseudo mdds”). In the first group there is no strong correlation between migraine and symptoms, but in the second one there is. What differs between those is that the first one is caused by motion which has had to be within a few days of onset of dizziness (maybe a quite long cardrive/boatride/planeride 1-2 days earlier or so); the other is thought to be spontaneous. It is also much more common with “relapses” among mdds sufferers who actually have migraines as well.

There is nothing that says that even though the same area of the brain might be affected in mdds and some cases of mav, that the cause is the same. I believe that just because you feel better in a car, it in itself isn’t both a sufficient and necessary “symptom” for one thing or the other; it’s just a strong indicator…

I actually wrote to two experts in the field (one who is doing research) and got some very good answers. However since they were for the mdds support group I don’t feel comfortable posting them here.

health.groups.yahoo.com/group/md … 0answered/

If this link doesn’t work go to the group and ask Marla for temporary membership to read. it definately sheds some light over all this since I myself have been curious about the possible link between mdds and migraine.

Hi Mikael,

Thanks for clarifying all of this. What a bummer we have to sign in to view the replies though. Is it possible to summarise it here without it being an exact copy (as in dot points)? No worries if it’s all too hard though. Maybe you could ask for permission somehow?

Scott :slight_smile:

Luke,

Dr. Hain said the exact same thing to me. I have actually had true MDDS in the past with travel and then this time spontaneous onset for 5 mos. now after the birth of my daughter. He is having me try Klonopin in the evening before bed and if that doesn’t work on to Effexor. Any luck with you? Hain believes there is a strong migraine component when there is spontaneous onset.