Hello Muppo!
I am still so curious why Dr. S feels there is a compensatory mechanism to this whole MAV diagnosis??? Interesting, and in some ways hopeful that in time one can get better even without meds. But I still am not convinced that an unstable process like MAV has a compensatory process in the truest sense.
Right now I am coming off of topamax. I went up to 175 mg and stayed on this med way too long… guess it was wishful thinking. Once I get off that I am going to try to get off the 120 mg of verapamil I have been taking forever as I am not convinced it is doing much for me either. I am not sure what my next steps will be as right now I am focused on becoming med free. I have been on meds for years now with no relief. I am not overly optimistic for myself in meds helping me at this point but perhaps after a medication holiday my feelings will change.
Gosh, us ladies all seem to be in the same rocking boat! :roll:
I’ve been rocking too 24/7 the last 6.5 months as well. I cannot figure out why this episode is different than the last 18 years I’ve had this as nothing had lasted longer than 1 hour. It is so sad and frustrating being rocky/dizzy like this, especially having a 3 year old and a 6.5 month old baby.
Like Scott said, " Fake it til you make it" and the more busy and the more I’m moving the better. It’s when I’m sitting, or at dinner or in the shower it’s the worst. I will never get on a boat, a ride, I’m even hesitant at elevators praying that the mdds won’t attach itself on top of this! yikes!
I’m 3 months on Topamax, 125mg and so far no relief…
Is the rockiness part of the migraine, or could this be another issue??? There was a time last week where I had another “dizzy spell” on top of the rockiness when I turned my head and it lasted a good 5 minutes and I was thinking that could have been the MAV part and maybe the rockiness could be some other issue…
Therein lies the question as to whether the rocking is mdds or not. If you can, read Dr. Cha’s paper (not just the abstract) and let me know your thoughts. Thanks!
Lisa,
Sorry about my short response about Dr. Cohen but I had a severe infection at the time and was in a bad spell. I lived on the Upper East side for a short while and went to Mt. Sinai. Finished my studies in NYC and moved to NE so I no longer am in touch with him but did know of the research study which was presented in Iceland last year.
Question for those who rock? Does anyone use a hormone patch for replacement therapy? I was on a steriods and have been left with some strange hormonal symptoms that are not helping the rocking at all. I was basically in menopause, but on the third day of the steriods that changed.
Just wondered if anyone can contribute their experiences.
Lisa and Sally and others, I’ve not actively researched MAV or MDD for a few years, but I recently resumed. I think, although I can’t be certain, that the so-called “spontaneous MDD” is actually a MDD-like syndrome and not “pure” MDD.
But if my assumption is right, don’t confuse spontaneous MDD-like syndrome with spontaneous reactivation of MDD without a motion trigger. It makes sense that even after readapting to land, the brain can, under stress or some other factor, revert to MDD without a motion trigger. But based on the articles I’ve read, a motion trigger is required for initial first-episode pure MDD.
Btw, I have had MAV almost all of my life, and I have no family hx of migraine of any sort–not even headaches or motion sickness let alone aura or rocking 24/7. But I start counting my MAV years at age 10 and say I’ve been MAV-ing 20 years because it really didn’t start affecting my quality of life until around age 10 (escalation of sx coincided with menarche). I have always had MAV, though I did not spin for the first 8 years (true vertigo is hell), so based on my experience, you have MAV. (“hurrah” :() Doesn’t mean there isn’t something else going on in addition tho. Anyway, MAV from dizzy day 1 for me, but it’s possible I also had superimposed periods of MDD. Motion is a HUGE MAV trigger for me so it’s hard to tell what’s what.
Jen, I have read some of your posts, and our sx are very similar except for age of onset and I am much worse now despite tx than when I started. And, like you, since the rocking started I have never truly been still though it has faded to as you say “background noise” on my luckiest days allowing me periods of higher functioning. Do you find yourself needing to shift positions to temporarily mask the rocking and pitching? It’s become second nature to me. People think I fidget for some other reason and I’m perfectly fine letting them think that!
Hope that help for what it’s worth from another dizzy person’s experience and perspective.
Hi Serendipity, sorry I must have missed this post,
sounds very much like you know your stuff about mav and MDDs.
**Do you find yourself needing to shift positions to temporarily mask the rocking and pitching?**Not anymore although people have noticed me rocking from side to side when standing still.
Motion of a car really help me, but I have shocking depth perception now , I bang myself around heaps, sometimes go barrelling into walls and furniture due to depth perception probs.
Hmmm?
Do I have MDds probably , but the underlying reason for MY MDds is silent migraine. 8)
Thanks for joining in the discussion. I am so sorry you have been sick for so long. How debilitating are your symptoms? ie… how functional are you despite the 24/7 rocking amongst other symptoms I imagine?
I was also wondering what treatments you have tried over the years?
Jen, hi thx for your reply. Totally identify with banging into things, but for me, it’s loss of balance and rocking when I walk. It’s hard on the hips, elbows, knees, shoulders, back if you also fall, etc.
Actually, after 20 years of this crap I still have few hard & fast answers except that this is a condition that doesn’t respond to surgery.
I understand why some people and physicians say the label is not important because you’re rocking either way, but I think the MAV v. MDD question is highly relevant because there are tx that can control the former for most people but I’m not sure about the latter. MAV is poorly understood; MDD even more so.
Jen & LIsa, do you find that motion is a huge MAV trigger for you? Riding in a car often temporarily masks my sx but it’s really a trigger because when I get out of the car I feel worse.
Lisa, I’ll send you a note w/ my tx hx or post it here later. I’m trying to come up with a condensed version. MAV has been around for 2/3 of my life and so many drugs, so many drs, so many trials of this/that!
What others have said re preventives is correct–what works for one may not work for another. For me, conservative use of flunarizine helped for 4-5 years, and amitriptyline was (briefly) effective when flunarizine bottomed out.
Does clonazepam help curb your sx at all? Not a preventive, but help you function? It helped me for 3 yrs.
Thanks again for your reply and I will very much look forward to learning more about your history. I am also wondering how disabled you are at this point? I find the rocking extremely disabling and I sometimes will describe it as a tilting sensation at times. The car offers me complete relief, but my symptoms really are 24/7 so I am not sure if they are exacerbated after my brain is “calmed” by the car so to speak. I certainly am fearful of going on very long car rides just in case I will suffer more because of them. And yes, the feeling of rocking is very hard on your entire body as my hips and shins have paid for this a lot.
Regarding what you said with Mdds having to have a motion history, if you read Dr. Cha’s paper, she seems to somewhat dispute this and believes in spontaneous cases of Mdds. I know Dr. Hain believes what you said to be true, but Dr. Cha, the leading expert and researcher on Mdds, would disagree and she explains this in greater detail in the paper that is attached with this thread.
But of course, without any motion experience, we really will never know which is correct and trialling meds is the only way to attempt to alleviate this rocking feeling. Is not responding to any MAV med diagnositic for Mdds? Rhetorical question I suppose as I really don’t know the answer to this.
Klonopin did not work for me. I have heard of patients with Mdds responding at least partially to the SSRI’s and Effexor, as well as Klonopin of course.
Hi ,
No I dont find driving in a car a trigger for me.
when I first stated rocking, I use to have have the once in a blue moon remission, maybe once every 3 years for about a month or two
During this time, If I went on a boat (on silky smooth water) the rocking would come back immediately and last for another year.
I was told by a Dr and a neuro to go back on another boat to rid myself of it,that just made things worse.
Treadmils would trigger it too, any thing that wasnt stationary platform.
flying as well.
Hi to everyone,
Just to add to your discussion, I have been a silent sufferer of MDDS, first diagnosed about 9 years ago from onset of a plane trip, and subsequently from a short boat ride.
Although now I have other symptoms, apart from rocking/swaying 24/7 I have had 2 visual migraine auras, no pain, slurred speech and not being able to talk on occasions, confusion when doing tasks, ringing in the ears etc. Driving in a car, I usually couldnt feel the symptoms, although I think that long drives certainly have a bearing after getting out of a car ito feel the rocking more. Without talking with Jen on the phone I would not have related the other symptoms to MDDS or MAV or ?
The debate is -
Are you talking about pure MDDS, or MDDS causing migraine related symptoms or
It is for us originally MAV that caused this and therfore causing the MDDS ?
What other symptoms small or large people maybe experiencing that they havnt really said that we may all have in common ?
@serendipity : did you experience major side effects with flunarizine? i have to take it but i am scared with the depression and parkinsonian-like syndrom it can cause. Thanks!
@serendipity : did you experience major side effects with flunarizine? i have to take it but i am scared with the depression and parkinsonian-like syndrom it can cause. Thanks!
— End quote
Hi, sovertigo, I do apologize for missing this post–I don’t often check in here.
Yes, I had major side effects with flunarizine. MAV and MDDS also typically come with medication sensitivity. Sorry, I know this is not what you wanted to hear. I was also very nervous about the potential Parkinson-like syndrome that can result, which is probably attributable to the dopamine blocking effect of the drug (it is more than just a calcium channel blocker). That said, I have taken flunarizine for up to 5-6 weeks at a time several times in my life, and the worst side effects were extreme fatigue and cognitive dulling. By extreme, I mean moving felt like I was moving through molasses, my limbs felt heavy and clumsy, and I was almost like a zombie. I wouldn’t be able to work full time on flunarizine. BUT at the time I needed to take it and was taking it, I couldn’t function (let alone work) anyway. I was almost bedridden. I would hold the urge to go to the bathroom just so I wouldn’t have to feel the rocking, swaying, bobbing, tilting, etc. when I changed position. When the flunarizine worked well, it worked very well (not symptom free, but functional. This is what I dared hoped for as I have NEVER been symptom free since this started 23 years ago).
I hope you find some relief with flunarizine. It was the most effective treatment for me until it completely stopped working in April 2010. I’ll also send you a PM in case you don’t check the main boards anymore. Good luck.
thx for your reply. Totally identify with banging into things, but for me, it’s loss of balance and rocking when I walk. It’s hard on the hips, elbows, knees, shoulders, back if you also fall, etc.