I’ve read that Dr. Cha (UCLA) is studying the effect of TMS on MdDs. In fact, there’s a physician on the MdDs boards who claims his wife was cured of MdDs via TMS. I’ve read about clinics also using the magnetic stimulation for migraines with some limited success.
I’m sorry if this has been discussed here before, but has anyone looked into a trial of TMS for MAV? It’s an interesting concept to me.
Yeah i’ve read alot about Dr Cha’s TMS therapies. I think she’s conducting her Phase 3 study (out of 4!) this fall. I would imagine TMS would be helpful for MAV because MdDS and MAV are both central vestibular disorders–no inner ear involvement. Not to mention all the symptom overlap.
Kennedy, I’ve read some of your older posts–was MAV your final diagnosis? I have received loads of diagnoses, and no one was even familiar with MAV. There was one dr. who thought i had MdDS but in hindsight, i don’t see how that is possible for many reasons. So as of now, I am self diagnosed MAV. My symptoms are currently somewhat better by 30mg Cymbalta and Valium as needed. One thing that stood out about your posts from earlier was that your symptoms started gradually just like mine did, then developed into a more chronic state. :-/
Hi Alternaace, Thank you for the additional information regarding TMS. I am very curious if anyone on this board has actually tried TMS for MAV if they are still suffering after exhausting medication trials…
Yes, my symptoms certainly started out gradually, morphed over time and are now chronic. It seems that most people here start with a “big bang” rather than have problems that come on slowly. I asked one oto-neurologist (I’ve seen 3!) specifically if he thought I had MAV and he said no because the symptoms do not present the way mine have. (Scott told me in another thread that that is not necessarily true.) He told me auto-immune inner ear disease, MS and microvascular compression of the 8th cranial nerve fit the gradual-onset profile…
You asked if MAV was my final diagnosis. Like I said, I’ve seen three different oto-neurologists in addition to my family physician, ENT, neurologist, 2 physical therapists, an accupuncturist, a chiroprator (was a quack!), a dentist who specializes in head pain, and an internist. As you can imagine, I’ve received several diagnoses (Labs, TMJD, vertigo secondary to night-time teeth grinding, hydrops, MdDs, bilateral vascular loop compression of the 8th cranial nerve, possible MAV, and my favorite… psycogenic vertigo due to anxiety even though I’ve never had anxiety!)
My most recent oto-neurologist is very well-known and respected on this board. He certainly seemed the most knowledgeable and was very thorough in his exam. He was by far the most helpful health professional I’ve seen. In his office, he zoomed in to my complaints of one-sided pain in the back of the neck that when palpated radiates up to my most symptomactic ear, something all the other doctors have discounted. I started getting the pain (and my dizzy symptoms) right after I was doing these really aggressive sit-ups. When I asked him if he thought my neck pain was related to the dizziness, he said yes. When I asked him if my problems were top-down or bottom-up, he said probably bottom-up (meaning being caused by my neck) and told me to get a cervical MRI.
In the meantime, he said he would start treating me for MAV, since no-one has gone down that path with me before and I do have some signs of migraines even though I never have had real migraine headaches. He also told me my symptoms were very MdDs-like since they are relieved by passive motion. He specifically said that MAV patients are usually more motion-sick in the car although there is a big overlap between MdDs and MAV.
Anyway, I recently received a copy of the letter sent to my internist. In it, he said I have central vertigo, with my symptoms most similar to MdDs. However, he goes on and says I have some suggestions for occipital neuralgia, MAV and cervical vertigo. He said if my cervical MRI turns out to be significantly abnormal, than at that point my chance of having cervical vertigo would be much higher.
In the interim, I had a cervical MRI that showed a ruptured cervical disc that was compressing my spinal cord as well as compressing the nerve roots on my symptomatic side. The ruptured disc was on the same side, right below where my neck has been hurting with the pain radiating up to my ear. Anyway, I had surgery last week and although I am still dizzy I noticed some very interesting developments immediately thereafter. I want to see what happens as I heal, although there may be no further changes. (I also understand there is some controversy on this board and in the general medical community regarding cervical vertigo; someone on this board was very kind to PM me regarding this earlier this month as I was unaware of that fact.)
Sorry for the long story; I didn’t intend to go on and on. So, to answer your question, I only have a “working diagnosis” of MAV and will go back on the prescribed migraine preventatives if I do not see any further improvements as I heal from the surgery. Alternaace, how long did it take after starting Cymbalta did you notice improvement in your dizziness?
I found this article about TMS and migraines in the UK. Very interesting if the results of the study are accurate:
Three months of treatment was found to relieve or reduce the excruciating pains in 73 per cent of patients treated in UK clinics.
Other symptoms of migraine, such as nausea, vertigo, memory problems and hyper-sensitivity to light and noise improved for 63 per cent of those tested.
I would love to try this as I have read about it. However, most insurances dont pay for it. The treatment calls for a 6 week trial…and youd need to go like three to five times wweekly… Maybe once cha is done her study and proves it can or may.cure mdds, insurance may accept it more. I know it has shown to cure depression that hasnt improved with medication. This could beour future 
Anyone know where I can find a writeup of Dr. Cha’s current study, e.g. the grant proposal? I read that the procedures are sham controlled; I read previously, in discussion of the procedures’ use for depression, that shams could not mimic the procedures because of the procedures’ side effects.
Somehow the idea of doing something to my head, without cutting or drilling holes, sounds much more attractive than taking drugs and watching diet forever. But liking the idea doesn’t mean it works. Sigh.
David, you might be able to get more information about Dr. Cha’s work from the folks over on the yahoo MdDs board. Further, I understand Dr. Cha submitted an application to the National Institute of Health (NIH) that reveals her study protocol. This might be public information and available online??
That’s very interesting regarding the depression study potential problems re: sham control. Are you saying the subjects would have most likely known if they were receiving the real tx or not since only then they would have had a headache and felt a tingling sensation in the head afterwards?
I have also read that some insurance companies in the US are now covering TMS tx for depression. It certainly wouldn’t be far-fetched for many of us on this board to have some aspect of depression due to the symptoms we face everyday…
David, here is a link to Dr. Cha’s NIH application:
search.engrant.com/project/Twrai … _debarquem
Unfortunately, it does not contain her tx protocol. I also just read that Dr. Cha has not published her protocol anywhere… That’s all I know.
Thanks, KennedyLane.
I don’t remember for sure, but it was a matter of feeling something like that if you were given the real thing that you wouldn’t on the placebo. I’d assumed you’d feel it during the actual application, but didn’t check.
This is interesting!
I just looked into it online and it seems it is used for depression. So if it were to increase neurotrasmitters (like serotonin, dopamine and norepinephrine) it would stand to reason that it could help migraine.
This might be exciting!
Kelley
Just looking into all of this stuff, and of course want a magic pill or quick fix…
medicalnewstoday.com/articles/181108.php
or do you think this is a bunch of bunk?
eneura.com/about_migraine.html
KennedyLane, I urge you to be very careful–even wary–of the “8th nerve microvascular compression” diagnosis. I believe I am the only person on this board who has had bilateral microvascular decompression surgery for presumed microvascular compression that did not exist. Indeed, I am one of the few patients anywhere who had this operation on the 8th nerves. Did it help my MAV and MDDS-like symptoms? Not one iota. This situation is not like trigeminal neuralgia (some are due to 5th nerve compression) or hemifacial spasm (most are due to 7th nerve compression) where surgery has repeatedly yielded dramatic improvement or cessation of symptoms. I’m not sure what treatments you’re pursuing, but if you have MAV or MDDS, I hope they’re not surgical.
Dr Silver in the UK mentioned this to me last night. It was one of the options he discussed. I am trialling a vagus nerve stimulator first. I would imagine if it doesn’t help then we would look at this. Very interesting.
Kathy x
— Begin quote from “KathyD”
Dr Silver in the UK mentioned this to me last night. It was one of the options he discussed. I am trialling a vagus nerve stimulator first. I would imagine if it doesn’t help then we would look at this. Very interesting.
Kathy x
— End quote
Kathy, are you saying Dr. Silver mentioned trying TMS at some point? Did he mention if he’s used it for other patients?
Hi, I am pretty sure he did although can’t be 100% certain (he speaks rather quickly!) At the time he was almost thinking out loud, considering the next steps in my treatment. I didn’t get a chance to ask about success rates with it as he decided to try me with the vagus nerve stimulator instead.
However, if you look at slide 6 of the presentation (see below) ‘Treating Acute Attacks’, point 3, coming soon, mentions TMS, VNS. I am pretty certain these stand for transcranial magnetic stimulation and vagus nerve stimulation. Not sure what Gepants is!! I would say this pretty much confirms that he considers this to be a possible treatment.
mvertigo.org/ppt/treatment_m … er2013.pdf
Kathy x