Appt. at UCLA tomorrow!

I am very much looking forward to my appt. with Dr. Cha at UCLA tomorrow. I am trying to figure out what this 24/7 dizziness is going on and whether it’s a spinal leak or MdDS, I am happy she has agreed to meet with me (take a new patient) and try to figure me out!

She is specializing in mal de disembarquement syndrome and is using a therapy she is trialing that seems to be working for patients. Maybe it can help me since I have been diagnosed with MdDS by my other nuero and pt.

If anyone has any questions they would like me to ask about mav and MdDS please let me know and I’d be happy tO ask her if I get it in time before my appt time.

Wish me luck!

Wow too bad I don’t live any closer to LA (I’m in North Carolina). I have had 4 different diagnoses in the last year—Bppv, cervicogenic, anxiety, and my most recent one per the neuro-otologist was MDDS. At one point he asked me if i ever had migraines; i said no and he marched forward. Sure, my constant steady rocking is consistent with mdds, as is the fact I’m usually better driving. On the other hand, my symptoms came on very gradually in the course of a 2-year period. All I had back then were episodic quick spins. No known motion event started this. Since last year, I have been relapse-remitting, with constant symptoms during relapse. Lately, it feels like I’m on a slowly revolving carousel. I feel as though I’m in motion, never the environment. Got quite a few other weirdo symptoms that may or may not fit the mdds picture, so i’m still clueless lol.
I have heard great things about Cha’s new mdds therapy (TMS–transmagnetic stimulation therapy i think it is). So you were diagnosed by your neuro-otologist and physical therapist? What kinds of treatment have you tried thus far? Please let me know how your apptmt goes with Dr Cha. Good luck!

Hey Salem,

Can you remind me what it was that excluded migraine in your case?

Hope the appt goes really well.

Best … Scott :slight_smile:

Hi Salem,

Great that you’ve got the appointment. Will be very interested to hear how it goes.

I’d like to know how she distinguishes migraine from MdDS. I’m a definite migraineur with possible MdDS episodes as well - my neuro didn’t even tell me about the MdDS, it has just appeared on my notes. So I’d be very interested in any light Dr Cha can shed on differentiating the two.

Good luck and thanks!

Vic

Very interesting, this has been my latest diagnosis along with migraine. I’m very interested in outcome, had you traveled prior to onset? The biggest disappointment for me with mdds is no real treatment, doc told me just to live my life as normal as possible, but it’s hard! I would be interested in her take in statistics of spontaneous onset along with duration and age . I heard she’s very good but I also heard that she’s leaving ucla soon to work in Oklahoma? Anyway good luck, I will be eager to hear how it went. I’ve been directed to see dr cho at mt sanai in NYC but haven’t set anything up yet as I’m not convinced it would change anything.
It’s weird though as I had s stretch if almost feeling normal and then boom yesterday back to crappy, the only thing different was diet soda made with Splenda and weather change, so idk but I do know mdds fits me well with physical symptoms

Wishing you the very best at your appointment.

I, too, have horrendous rocking (mostly when standing and walking), and MdDS is always in the back of my mind. Thus far, all my docs do not believe I have it (I do have a significant migraine history), but my docs strongly believe that you have to have a precipitating event (boat, etc), I, though, still worry, as I believe that there isn’t much treatment for MdDS. I am glad to hear that there is actually new treatments to address MdDS. However, all my doctors have always said it is impossible without a precipitating event and is actually an underlying migraine issue. This is all so confusing. Regardless of the name, I just hope we all get well one day.

Hi,

I am in Southern Cailifornia also and have been waiting to get a referral to UCLA since October. I’m sure I won’t get it because I have an HMO and they said if I didn’t receive it within 3 months that probably means it has been denied :frowning:

I wish you the best of luck tomorrow with your appt. and hope they find some answers for you.

Take care,

Donna

Wish you good luck at your appt and I hope the doctor will be able to help you. I pray for all of us daily to get rid of this nasty illness that takes so much from us. Dizziness and vertigo are debilitating.
Nance

If I were doing a research degree, I would want to learn more about MDDS. I believe its likely that MDDS and MAV are closely related (similar mechanism in the brain). I have seen Dr. Hain diagnose a few people with MAV + MDDS. Id love to learn more about it!

Have you gone yet? How did it go? Thinking about you!

hey everyone!

i had my appointment with dr. cha yesterday and it went really great! she was really nice, accommodating and took her time with me and was not rushed at all. we started from the beginning with my early childhood history of dizziness from the age of 10 to my “big bang” crash last year after having my daughter. she wanted to know everything and i thought that was great. she was very detailed and i admired that.

after my history, examining my tests (which are all normal) and giving me an exam, she gave me my diagnosis- migraine associated vertigo which i already knew and spontaneous mal de debarquement syndrome.

i had always thought mdds could only be brought on by movement such as a cruise or a train, etc. but she has 4 categories that mdds is brought on by and please forgive me for not remembering them all because i was concentrating on the things that concerned me and one of them is hormones/childbirth. most of her patients are women in their 40’s-50’s menopausal state but she has patients that come in after they have given birth as well as months after they give birth and also when they stop nursing when the “rocking” begins.

i asked her how she distinguishes mdds from mav and her answer was exactly how i knew there was something else to my mav. this is not quoting dr. cha but she said along the lines the way she distinguishes the two is that mav is true vertigo and she doesn’t think mdds is a variant of migraine. i am so glad she said this because for 20 years of having mav and not knowing it, i would only have true vertigo attacks. they would last only 30 minutes and then slowly disappear. after having my daughter, and being “rocky” 24/7 i knew there was something else to this mess.

she also has a handful of patients who have mav and mdds together and she believes that these headaches have gotten worse with mdds which has been the case for me. i really never had a headache until about 6 months ago and they have seemed to slowly get worse and worse with stress.

some other notes- most mdds patients feel best when moving- standing, walking, in a car, etc. she is a big believer in waking up early, getting 30 minutes of sunlight and getting a lot of sleep. of course the lifestyle, diet we all know about as well!

i am currently on topamax but because of my headaches (which she told me they were migraine headaches without aura and i was so surprised!) and “rockiness” that i am still experiencing, she wants me to try new meds. most of her patients have success with effexor- feel 90% better with the rockiness but she told me that you either are good or not good on this drug, there really is no middle ground. also, she wants me to switch over to diamox which seems to be the new hip drug here :smiley: and take a low dose of klonopin twice a day. she is sending all the dosages over to my other nuerologist so i have no clue on the dosaging yet but am super nervous of course to stop and start new drugs but of course eager of the possibilities!!!

she is moving to oklahoma city to further her TMS Therapy which was just to costly at UCLA. she is in her 2nd phase out of 4th phase and am hoping in the near future we can have at home devices to get rid of this rockiness!

i hope i have answered some questions and given some help.

here is a video link to her tms study
abclocal.go.com/kabc/story?secti … id=8389660

Wow, that makes a lot of sense. So effexor and diamox? When do you start them? I am so, so glad you got some answers. I’ve had a fear of MdDS myself all this time too! I really hope they give you some relief. FYI diamox is really tough the first week, major stomach issues.

Thanks for sharing. So glad it was a positive appt. It is very confusing as all my docs seem so confident in the mav diagnosis. But, am beginning to think it’s not the name that matters, it’s that there is hope and a treatment. It seems regardless of name the doc uses similar meds r given. So, she seems hopeful for you? Is she not giving Topamax because it’s not working for you or she Always gives diamox over Topamax. Sorry for typos - using my phone

So the doc basically said that your chronic problems are caused by MDDS and not MAV? So when she said that her patients usually get 90% better on Effexor, is she referring to MDDS (rocking) patients or MAV patients?

Thanks for the information. I wonder about MDDS due to all the rocking. For those of you who have the constant rocking…does it interfere with walking or your gait?

Kat

Donna- i know how you feel about those darn hmo’s. that was me the last year living in referral hell! i paid out of pocket to see a few doctors but didn’t care! i was ready to sell my car if needed to get my life back. this year we were able to switch to a ppo plan thankfully. dr. cha is there for 3 more weeks if you want to get there. from the paperwork, i believe you can pay out of pocket and i think the pay ranges were between $300-$700 to see a dr. in the ucla nuerology department but i remember the insurance lady saying she rarely sees it on the high end. good luck with whatever you choose.

Elsiha- we have many similar symptoms and i had you in mind since we have a lot in common. i have no doubt that you may be experiencing mav and mdds as well. i told my husband that i could no doubt have a spinal leakage too! are you currently on diamox, right? thanks for the heads up on stomach issues! do you mean throwing up? nausea? oh man…

Kat- you’d think the rockiness would interfere with 24/7 rocking but so far i have pretty good balance. i am only 30 years old so i wonder if when i am an old woman suffering with all of this how my balance will be then…when i close my eyes though it does get more difficult.

Darren- I’m not sure about the chronic thing, I didn’t ask her but my guess would be mav since I’ve had this since I was 10. She was mentioning her Mdds patients when talking about Effexor.

Lisa- I’m not sure what her drug of choice is for MAV but I think in my case because of my headaches and cognitive problems that she said let’s try something different. With diamox she said I would have less cognitive problems.

It is interesting how no matter what you have, the drugs are similar! I was thankful that I had heard of the names of the meds she gave me only because of this helpful board. I wish I could try the TMS therapy. Maybe in the future.