Unfortunately, I cannot answer specific questions. Also, there is no way to predict what will happen to an individual – everybody is different.

Dr. Mauskop, my husband seems to have developed Mdds. This is self diagnosed as no doctor has diagnosed it. Will it go away. It has been 3 months since he has been feeling like this. He is 35. Does it go away in majority of patients.
How do you differentiate b/w PPPD or Mdds.
What kind of physio exercises are best for this.

I read about your supplements recommendations. Unfortunately, we don’t have RBC magnesium test in my city. But we will start magnesium glycinate, coq10 and alpha liphoic acid.

We did go to the beach earlier and he was in the water quite a bit. Maybe later he got a cold/ or covid I don’t know. Maybe that’s why it hasn’t gone away?

Yes, any motion can trigger these symptoms.

Hello Dr. Mauskop, I am thrilled that you have blogs to help migraine and MdDS-inflicted people. I noticed a posting by you that indicated a slow-moving conveyer belt-MRI scan bed (used to insert and remove a person into and out of an MRI) could have caused this woman’s MdDS. Her question was: “could a rolling MRI scan bed be the cause?” (she was referring to her getting MdDS from this rolling MRI scan bed). On that same vein, could a rotary/rotational chair spinning clockwise and then counterclockwise cause MdDS? My fiance got a strange sensation “directly” after disembarking the Rotary/Rotational chair and the symptoms go away 100% in a moving car. She also experiences a strong gravitational pull and motion. She had none of these symptoms “before” undergoing the Rotary/Rotational chair. Thank you.

No way to know.

hi Doc! I came off a cruise 12 days ago, and I am still experiencing symptoms of Mal de Debarquement. It’s rocking, gravitational pull and swaying. I am able to walk and stand on one leg just fine! I have been keeping hydrated, resting, staying active, taking walks, and I’m also doing the Optokinetic head roll lines. I would say my levels are at a two or three most days. Do you think that there’s a possibility it will go away before the 30 day mark based on what I just said to you? Thanks!

If diarrhea persists, a fecal transplant is another option.

There’s no correlation, as far as I know. I would ask her doctor about trying various probiotics.

Acupuncture needles are placed in many spots, including hands, head, sometimes legs, and other places.

Dr. Mauskop,
Is there any correlation between MdDS and acute borderline chronic diarrhea post cruise.

My wife is 52 and we experienced MdDS that resolved itself 96 hours post cruise. We have cruised in the past and have never experienced MdDS,

The diarrhea was present 24 hours post cruise and has continued for 28 days of which she has been hospitalized for the past 21 days.

She has had every test known and all test rendered negative. The initial thought was bacterial infection which should have resolved itself by this point. There is also the possibility of viral or parasitic infection however all test com back negative thus far. Contact with the CDC VSP program reported zero passengers and one crew member with gastrointestinal illness for the duration of the cruise.

We know that body works in mysterious ways and wondered if your research shows a correlation that i could share with her team of doctors. I know its a long shot but the doctors are at a loss.

Hi Doc
Can you tell me where you (and where we) should get the acupuncture administered please? Which part of the body exactly and where? What do you do yourself for people??
I put mag flakes in my bath and they help somewhat.
Kind regards
Louise

It is very unlikely that Botox will worsen your MdDS symptoms. The only possible scenario is that if Botox injections cause neck pain, it could make dizziness worse. In large clinical trials about 9% of people developed neck pain from the injections. They improved once the effect of Botox kicked in. This usually takes a week. For the vast majority of patients with migraines and MdDS, Botox provides good relief.
As far as magnesium, RBC-magnesium is a more accurate test than serum magnesium. But if your RBC magnesium is in the bottom quarter of the normal range, you are probably deficient.

Dr. Mauskop,
I have the same question as Lynn. Could botox have a negative impact on my MdDS symptoms? I’ve actually read some research on botox and it’s positive effects on migraines and also thought there may be a possibility it could be beneficial.

Also, you mentioned that magnesium tests may not always reveal a deficiency. How can I know for sure if I have a deficiency? I’d be very interested in trying the injections but if it turns out that I don’t actually have a deficiency could it be dangerous to get the injections?

Yes, you can call 212-794-3550 to set up a virtual appointment. Please gather all of your test results for the past year and complete the forms that the secretary will give you.

I’m sorry doctor, i re-sent the message by accident. Is there any way I can contact you for you to obtain more information on my symptoms? I would really appreciate your response and advice

I am sorry but I cannot give such specific individual advice without obtaining a lot more information. You can schedule a virtual consultation by calling 212-794-3550.

I just wanted to add something else doctor, after my vestibular tests, the doctor told me it was a form of positional vertigo. However the reason I doubt it is because the swaying i have is constant unlike BPPV, however it also differs from mdds as i don’t have symptoms when im perfectly still, only when walking and making fast head movements. Do you think this may be a mild form of MdDS or some other vestibular problem? I would appreciate your response.

Hello doctor mauskop,
I’m a 20 year old pharmacy student currently having a bout of what i presume is a form of MDDS, however, i’d like to hear your opinion and recommendations on what i should do do for treatment and eventuall remission. It started in 2016 when i went on a 7 hour flight to germany. From that point on it went into remission several times, with each time the duration of the remissions increased until it went away for a year and a half until last month it came back spontaneously. The thing I find very strange is that the form i have is very mild, if anything, I’m symptom free when i sit or stand perfectly still, or when my eyes are closed even. The only times i have symptoms are in the first 2-3 minutes of walking and with very fast head movements.. It isn’t debilitating and doesn’t interfere with my sleep, however it is annoying sometimes. I went to a doctor last month and performed vestibular tests. It showed that i had abnormal left peripheral vestibular function and abnormal global balance assesment. I previously diagnosed myself by having MDDS merely because my symptoms increased after long journeys, the only difference being that it is mild and i don’t have any rocking or swaying when being perfectly still. I was wondering if you would classify this as MDDS or not, and hopefully give me some advice on how to treat it and maybe make it go away once and for all.

Dr I Was diagnosed with MDDS three years ago, and was wondering if Botox would have a negative impact on my symptoms.

It’s totally unpredictable.

If it subsides in 30 days people are not officially diagnosed with mdds.
If this happens in my case or a little over 30 days, should I expect that it comes back?
Or it won’t necessarily come back?
I’m sorry for my questions.

Yes, and yes.

Dear dr Mauskop,
Thank you for your reply. I forgot to ask: could a rolling MRI scan bed be the cause?
And I’m suffering now for 3 weeks, it is slightly better than last week. Could it also still subside by itself before being mdds?

You can try the ideas in my post – magnesium and other supplements and vestibular rehab.

Dear dr Mauskop,
I’m suffering from MdDS for 3 weeks now and I’m desperate. I’m not sure what the trigger is but I suppose it is a rolling MRI scan bed.
What can I do?

Whenever I get off an elevator, once I stand still I feel the floor dropping under me. It’s like waves of dropping going through me over and over. Its terrifying. It feels like a boat violently rocking. I am taking meds for anxiety which somewhat help with the constant dizziness off balance feeling I have. The elevator issue didnt start until recently within the past few months. Not sure if it’s related to my off balance feeling all the time. All I know is that it is the scariest feeling I have had in my life. Usually goes away in less than a minute after it starts, sometimes it starts right after the elevator and sometimes it takes a few minutes to start. But ends pretty soon after. Not sure what to do as I would like to get on an airplane eventually but know that with this condition that could be extremely terrifying after I get off.

Are there any updates from those that have posted in the past on what has helped their symptoms long term? I was on at ATV ride in Colorado almost 3 weeks ago and have had dizziness, swaying, leaning and off balance since the day after the ride.

I got off a short 2 hr flight on Monday and 2 hrs later experienced rocking and swaying sensations. Now I am also experiencing on and off nausea. I am currently on Amitriptalyne for other nerve issues and baclofen. I take 500 mg of chelated magnesium every night. What else can I add to stop this mess.

Yes, acupuncture is worth trying. As far as herbal Chinese medicines, it has to be from a reputable source with strict quality controls. Severe and dangerous side effects can occur from herbal contaminants, i.e. a toxic herb sometimes grows along the beneficial one and is accidentally harvested and included in the mixture.

Dr. I am a Chinese and I am wondering whether Chinese medicine and therapy might be effective to the syndrome?

Yes, I do

Dr. Mauskop, Are you still treating people for mdds?

There is no good data to suggest that migraine sufferers are more prone to MdDS, however they are more likely to develop dizziness and vertigo.

I have vestibular migraines and currently on Verapamil for them which helps. I am wondering though if I am more prone to MdDS because of the mirgraines. I have a boat which I only have sea legs periodically, last a few hours but I am going on a cruise and extremely worried about MdDs. Being dizzy is miserable!

No, I haven’t seen MdDS start after an elevator ride, but any kind of motion can do it. There’s no best treatment, it’s all trial and error. Vitamin levels should not be just within normal limits, but at least in the middle of normal range and not at the bottom.

Hello,

I’d moved to the 12th floor of an apartment building about a year prior to onset. Maybe a couple of months before, I’d feel a bouncy feeling shortly after getting off the elevator, like the floor was a trampoline. The feeling only lasted for about 10 seconds each time. Then one day, I went to lie on my bed and felt like I was afloat at sea. But I felt nothing standing or sitting. It’s been a year now and still have it when I lie still. No migraines or trouble finding words or cramps. The ENT I saw could only call it a “form of MdDS”, which isn’t much help. Have you heard of something like this being triggered by an elevator rides? Riding in cars cancels it out, and a 7 hour ride did make it worse, but it settled back to “normal” within a day. Seems like MdDS, but I must be one of those odd “spontaneous” cases with no apparent trigger. I did take a flight, but that was over a month prior. No obvious vitamin deficiencies, but what seems to help your patients the best? Magnesium, b12, or fish oil?

Thank you very much,
Rich

Tegan, My story is very much like yours but has lasted longer unfortunately. It’s crazy that driving a car is my only relief as well. I was on an SSRI for a long time which took the edge off. I quit taking it 6 months ago out of fear it was not good for me and I’ve been struggling mightily since including what I think is depression which is new to my life and probably the worst part of all. I tried to go back on and had horrible side effects for some unknown reason and stopped. Has anyone experienced this or does anyone recommend a specific SSRI or advise against it?

Dr. Mauskop – do you have any colleagues in or near AZ that focus on MDdS?

Thank you very much

In the original post I mentioned magnesium and other supplements and medications. Readers’ comments can also give you some ideas.

I have been dealing with what I believe to be MDDS for almost 3 years now. The symptoms seem to come and go in 3 week increments. I have had numerous tests including MRI, Cat-scan, thyroid, blood tests as well as been to an ENT. All results have come back normal and I’ve been told that I simply am stressed and have anxiety. I can admit that being a 23 year old pursuing a masters degree and dealing with these symptoms is stressful and tiring. That being said, I believe the floating I feel along with my brain fog and the the fear of bad days is causing my anxiety. Driving seems to be my only go to temporary “cure”. Do you have any suggestions for relief that I could try?

Kind regards,
Tegan

Thank you for sharing this relatively positive experience. Many MdDS sufferers become depressed and despondent, which further impairs their ability to function. Meditation, cognitive-behavioral therapy, physical exercise, and possibly several supplements can provide partial, but very meaningful relief.

I went on a 6 hour flight to Washington, and when arrived I first noticed the symptoms when I was leaning on a chair. I thought nothing of it. It really hit me when I was walking in the city and I felt as if the ground was moving below me. From that day until now I still feel as if I’m on an airplane. It will be 9 years now. It has gotten better. I don’t feel the ground moving below me anymore when I’m walking. However, I do feel like I’m swaying back and forth when I’m in bed. It gets worse when I’m tired. It does teach you patience I believe. I’ve accepted that I may live with this forever. It’s weird though because I’m naturally a happy guy and it doesn’t really bother me anymore.

Zoloft is not bad, but is not very effective. I would consider magnesium (by mouth or even better if intravenously), vitamin B12, other supplements, Gammacore (vagus nerve stimulator), and several drugs mentioned in the original post.

I have had 2 bouts of vestibular migraines one which was 3 months duration and the current episode started after a sever migraine which has been followed by rocking dizziness with mild headache. My vestibular symptoms have been present for 9 months now. MdDS has been considered but I have had no cruise or flight triggers.I went to DR Dai’s MdDS treatment at Mount Siania which just triggered another migraine in April and I got worse. I am taking amitriptyline 10 mg /day and my doctor started me on zoloft 25 mg for the vestibular symptoms 1 week ago. I am having horrible side effects including sleeplessness, vivid dreams, dry mouth and a slight headache. I READ YOU FEEL ZOLOFT IS NOT A GOOD CHOICE FOR THIS COULD YOU RESPOND. I have tried to increase the amitriptyline but get heart pounding and am afraid to go higher. Ann thoughts would be appreciated. Thanks

The recommended daily allowance for magnesium is 400 mg a day. vitamin B12 supplements usually come in 500 or 1,000 mcg strength. Several other blog posts give more details about these supplements.

Everything you described above fits me to a T. The cold cramping feet and legs.Sometimes my neck feels like a knife in it. I have confusion sometimes. The balance issues started last summer and have been constant since. How much magnesium and b12 should I start with?

Do people have underlying medical problems already? Also why can some people go on cruises and the 5th time get MdDs. This syndrome is neurological and not crystals in ear. The majority of people are women between ages 40-60. Do may children get this. Do I worry or not worry wish I never came across articles. Want to go on cruise, but I think I will worry whole time.

There’s no way to know.

I have BVVP occasionaly would like to go on a cruise for the first time with my family and friends will this BVVP bring on MdDs. Also two of my children have anxiety, depression and OCD can this bring on MdDs. Thank You

I went on a 4 day cruise the end of Feb 2017, never had one moment of sea sickness but have had the ‘being on the boat’ sensation ever since. It feels like parts of my body are incredibly heavy, my legs especially. I feel like there is pressure in my ears. Being in a car or in a swimming pool relieves these sensations. Mornings are pretty good but it hits as soon as I brush my teeth (weird, I know). I have been to physical therapy, an ENT, chiropractor, acupuncturist, health manager, with no relief. I started taking Mucinex, which I guess has helped a little. I have also started B vitamins. I have also suffered from Burning Mouth Syndrome for the past 17 years. I feel like both Burning Mouth and Mal de Debarquement are somehow related and if I can find relief from one, it will also help the other. I will try the Magnesium & B12. I appreciate the comments here. I hope we all can find relief from this together.

Unfortunately, I cannot give any specific advice to patients I have not seen and examined.

Thank you. Do you think that if Verapamil helped me it is still possible for me to have MdDS?
Do you think I really need to try and get diagnosed? Or do you think what can treat the vestibular migraines can help MdDs?

There is no definitive way to confirm MdDS vs vestibular migraines since they share many features. However, magnesium is definitely worth trying. If taking it by mouth does not help after a month, an intravenous infusion is worth trying. There are other options you can read about in the blog post and comments.

Perhaps I can come and see you dr. Mauskop. I would also love to hear your thoughts on what you think. I did think that if the verapamil was helpful- that it was most likely not MdDS.

I am really lucky to have stumbled upon this. About 20 years ago I was on a holiday in St. John’s, I went on a boat and spent the day mostly in the water and on this boat. I felt great until I got back to land. That night, when I went out to dinner, everything was spinning. I also had a rocking sensation. I had no idea what was wrong. I then had to return home on the plane. When I got home I had very severe vertigo. I had spinning and rocking. I went to different doctors and also had vestibular therapy. My diagnosis went from labrynthiitis to meniere’s disease. I finally got better after time passed- 2 months prob. Years later I had another attack after riding on a big bus. I was not able to look forward and my head was turned to the right because someone was talking to me for the whole 2 hour ride. When I got off the bus- I had vertigo for 4-6 weeks. This is how long my episodes last if they are severe. My next episode was years later when I had my 2nd baby. I had severe BPPV and also had the vertigo I had previously. I had rocking and dizziness. I did the Epley maneuver and vestibular therapy and gradually got better. I was however incapacitated for 4 weeks. I finally found a neurologist at Mt. Sinai and he diagnosed me with vestibular migraines and had no doubt. He is very good and put me on Verapamil 240 MG. It helped and I did not get any severe episodes until recently. I took a very bad car ride in the rain. The car was being blown all over the road by 50 MPH winds. I could tell I was getting set off when I was in the car and when I got out I knew I was doomed. I had an episode which lasted severely for 6 weeks. I was put on Benadryl 2X a day as well as Nabumetone 500MG. I took these for 2 week until I felt better- and then my Dr. advised me to continue for 5 more days after I felt better. I am off the medicine and feeling better but not yet 100%. So I decided to go for a second opinion. I went to another neurologist and after an 1.5 hour appt. he told me he thought I had MDds. This is really upsetting and I don’t know if he is right. He is not 100% sure but that was the diagnosis he was leaning towards as opposed to Vestibular migraines. Here I have been thinking I had Vestibular migraines and now this curve ball. I still think I have vestibular migraines because my symptoms can be triggered by my period and barometric pressure. But now I am confused. Motion is definitely a piece of this puzzle. At the same time this neurologist told me this he also said that I should try the magnesium and B2 as well. I am doing this with verapamil. Any thoughts?

I am having great success with coq10 and ala along with b12 and venlafaxine. not sure if coq10 or ala alone would put me at this state but for now this is working. levels 0-1 for a couple of weeks after starting 3.5 months ago. Thank you dr mauskop.

I am 49 years old and have mdds for 11 months. i will try apa and magnesium. i already take b12 and trying zenlafaxine in low dose about a month. it allows sleep without a sleeping pill. had earthquake a year ago and a couple of weeks later developed this condition during sleep. had mri and was clean. suffer from tinnitus in left ear also for years. i think it is all related and anxiety from it keeps the cycle running. i am also feeling cold often and exposed to cold air at work and we have been trying to accommodate that issue. that study showing disturbance in the brain is good news. hopefully a full blown cure is discovered conclusively. changes your lifestyle and work ability 100%

There is a lot of literature about the dizziness component of MdDS but nothing on the Brain Fog symptoms. Anyone know of any treatments that focus on this part of MdDS? For me, the brain fog seems stronger than the unsteadiness since I have been doing VRT.
Thanks!

Running is not a likely cause of MdDS symptoms, but have an inner ear dysfunction is. Those who suffer from MdDS though have normal ears.

I’ve struggled with balance issues and lightheadedness for about seven months now. I’ve seen numerous doctors, had two MRIs and am now trying a B-12 supplement and Vitamin D supplement as directed by my ENT and chiropractor.

I’ve been diagnosed with loss of vestibular function in one ear, but my symptoms are very similar to MdDs. I feel a constant rocking that is only helped by car rides and sitting in a rocking chair.

I’m an active runner, but is it possible that a long run (more than 90 minutes) may have led to this?

Yes, please share

Dr. Mauskop, may I share the details for the treatment in Johannesburg here?

Igna; we have someone in Bedfordview that is treating me for MdDs – using Dr. Dai’s procedure. Contact me om amanda477@gmail.com for info.

You might want to google that person to find her.

It’s been some time since this blog was last updated. Just curious how your two patients are doing? Have they returned for additional infusions?

You would need to find a doctor in South Africa who would be willing to set up this treatment. Meanwhile, I would discuss with your doctor possibly trying acetazolamide, a drug for mountain sickness. I assume you have already tried magnesium and B vitamins. A very small dose (0.125 or 0.25 mg) of clonazepam or lorazepam (drugs similar to Valium) may not impair your functioning, while relieving the symptoms of MdDS.

I am a High Court judge in the Eastern Cape. Developed MdDS after a cruise in 2006. It goes away during passive motion such as driving, flying, being on a train and skiing. In 2012 I went skiing in Italy and the flight there and back (about ten hours each way) exaccerbated the symptoms considerably. Thereafter it almost went into complete remission until I went skiing at the same place again in January 2015. This time it is really bad and seems to be getting worse. Obviously I can’t take things such as valium etc because of my job. I don’t respond well to anti-depressants in any event. I have been communicating with the research institute at Mount Sinai for the treatment Dr Mauskop has referred to. It involves three 40 minute sessions per day over a period of four days. The cost is in the region of 2 500 dollars. My biggest concern is that flying there (about 18 hours) will definitely make it worse. The treatment may well be successful, but will it not simply be triggered by the 18 hour flight back home? I have posed this question to them and they are unable to give me an answer. Dr Mauskop, what do you think? Is there absolutely no way in which we as MdDs sufferers, can motivate to receive the same treatment in this country? What do I need to do to get the ball rolling?

Thank you for your post. Yes, this is a very promising treatment – see my description of it in a comment from 8/15/14.

Hey all, have you seen this? Sorry for the long URL — but it looks like a super promising therapy for MDDS. (Run in NYC) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4097942/
Some things that help me (that might help you):
– Lots and lots and lots of water (a TON of water during the day)
– Tea (I think I saw someone else mention Green Tea being such a suppressor of symptoms)
– I take Xanax to sleep occasionally as well.
– ALSO, Lipoflavonoid!!! An ENT reccommended it to me, and I’ve been taking it 3x a day (1 pill, not 2, although you can). It’s supposed to increase blood flow to the balance nerve in the ear. It’s great, great, great.
– Driving (obviously) 🙂

THANK YOU for this post!!!!

Supplements, such as CoQ10 and Boswellia, preventive migraine drugs, such as amitriptyline and gabapentin, and Botox may be worth trying.

Great site, I have MDds with all day headaches but not migraines. I was on a 5hr boat trip followed by a 6 hr drive the next day. I’ve never had migraines but I have had intense insomnia for the last 5 yrs with one episode last a full year..the night before I got very little sleep. take good multis,fish oil and starting to do magnesium based on the suggestons. Any suggestions for headaches? or could you share what has helped based on experience. i teach so I can’t be too drowsy. would muscle stem thats used at the chiropractors be good? beginning to have shoulder and neck stiffness. also starting physical therapy..not sure yet making it a bit worse. feel great after yoga..i’m imagining its the serotonin to the brain it feels like it minimizes my awareness of the rocking and my head is clear.

Dr. Mauskop, what dose of Magnesium drip do you use? 2 gram? Weekly?

Will infusions (are these the same as injections or a liquid?) of magnesium cause diarrhea? I take Mg supplements (due to PMS and migraines originally) and was unable to take 125% or more because it caused diarrhea; I don’t know my serum level but I also have IBS, reynauds… Thanks!

Yes, vitamin B12 deficiency is common at any age and ironically those with healthier diets are more prone to it. This is because richest sources of vitamin B12 are meat, liver, some seafood. Vegetarians are more likely to be deficient.

Even at though I am in my 30s? (not elderly)

Even though most laboratories quote 200 to 1100 as a normal range for vitamin B12, many will add a note that 10% of people with values below 400 may have neuropsychiatric symptoms of a deficiency and this may be also true in 1% of those with values above 400. So, 384 is most likely not enough and getting regular injections could help.

I have been diagnosed with MDDS. I am going on 10 months first episode. Before my 9th cruise I started having burning in the bottom of my feet and in my arms some. Also started having panic attacks and lots of stress and anxiety. It was my 4th cruise in the same year. My B12 came back 384 in a range of 200-1100. Do you think B12 injections could stop the rocking/swaying/bobbing sensations? I have headaches, brain fog, but the rocking is the worst.

I’ll try to make this long story short. 2nd round of mdds, last time was 4-5 months. Sometime during month 2 this time around I came accrued this article and self medicated with. C0q10 300 mg daily
Alpha lipoic acid 300 mg 2x daily. After 1 week noticed significant improvement. Kept on the regiment, around day 10 noticed bad flare ups of episodes. They seemed to coincide with the time of day I took the C0q10, so I stopped taking it altogether. The day after I stopped taking C0q10 I also put myself in isolation and hardly opened my eyes for 2 days. actually wore eye patches and felt my way to the bathroom etc. After the 2 days I avoided screen time and fluorescent lights (these 2 things were major triggers) for another week. I am symptom free except if exposed to flourescent lights.I am no doctor nor do I have a science background but I feel that the C0q10 really helped me, but then my system had too much of it, making me dizzy. I wonder if this is possible, or was it my 2 days of darkness, or chance.

A new study on MdDS was just published by three neurologists and an ENT doctor from the Mt. Sinai School of Medicine. This was not a blinded, but nevertheless a fairly scientific study. They treated 24 patients with a new individualized approach and produced significant long-term improvement in 17 patients. Unfortunately, the treatment is not simple and requires sophisticated equipment. First, the doctors determined the frequency of movements perceived by each patient and then used visual stimulation that was moving with the same frequency, but in the opposite direction to counteract the brain’s perception of movement. I am sure that Mt. Sinai Hospital will see a large number of MdDS sufferers coming for this treatment. Besides the distance that many will have to travel, the treatment is likely to be expensive. However, it should be possible to develop an inexpensive version of this therapy and I hope that neurologists and ENT doctors will develop and offer such simplified treatment.

Hi all,
By chance I stumbled across this chat board and recently have been thinking I have MdDS. I was diagnosed with depression and anxiety, as I was swaying then. I was prescribed zoloft but I went off of it. While it helped a lot, my symptoms have come back. I also had many tests done a year ago but they all came back normal. I don’t want to sound desperate for answers, but I am only 20 and leaving for my junior year in college soon.

This sounds like migraine-associated vertigo. Successful treatment of migraine (with drugs, magnesium and other supplements and/or Botox) will often help vertigo too. One of the types of dizziness might be benign positional vertigo and an Epley maneuver which you can do yourself can help.

I developed my living on a boat feeling after a 22 week long migraine. No boat or plane trip. I just went to an ENT to rule out many things including Meniere’s. We are going to do a trial medication for meniere’s because I have slight low tone hearing loss in the right with “drops” not migraine related. But I never “drop” foward always back that then include the fast spin cycle OMG I’m going to fall of the planet. Thankfully, a car ride “helps” tame the ocean motion and meclizine “helps” tame the spin cycle. I have two very different dizzy feelings, toss in chronic intractable migraines with three kids and I’m wondering where do I sign up to help find a CURE?

Unfortunately, we do not know any proven preventive measures for MdDS. Magnesium is a safe and inexpensive supplement that we recommend to most of our migraine and MdDS patients.

Two years ago I went on a seven day cruise to celebrate my fortieth birthday. As soon as we landed in the airport, I knew something was not right. I was rocking and swaying, like I was bobbing at sea. I experienced “sea legs”, a numbness and heavy feeling in my legs. When we returned home my legs became increasingly worse. By early afternoon each day, I could no longer stand. I went to the neurologist and underwent weeks of MRI’s, nerve tests, ect and finally a lumbar puncture. My symptoms ended up going away after 6 weeks. The dr had mentioned Mal disembarkment syndrome, but thought that I might of also contracted a virus that attacked my nervous system. Since then I have had similar symptoms, though less severe, after spending long periods of time kayaking, paddle boarding and boating on the lake. Each episode leaves around 6 weeks. I am currently going on three weeks of symptoms after four days on the water. I am wondering if leg sensations are a common complaint and if magnesium helps. I find my legs to be more irritating than my dizziness, as I am an active mother of four and always on my feet. I was also wondering if there is anything preventative I can do before being on the water to help lesson symptoms?

We do not always test RBC magnesium levels, especially if a patient has other symptoms of magnesium deficiency besides migraine headaches. These symptoms include coldness of extremities or often feeling cold in general, leg or foot muscle cramps, PMS, and “brain fog”. We also don’t wait for test results if a patient is having a severe headache at the time of the visit or cannot easily come back for a follow-up visit. However, we often order a battery of blood tests on the first (or subsequent) visits and then we always check RBC magnesium level, as well as thyroid function, vitamin B12 and D levels, and routine tests.

Thank you Dr Mauskop for your reply. One more question: do you test the RMC magnesium levels before your treat with magnesium? Is that something I should ask my internist to do? I appreciate your advice.

There is an overlap between vestibular migraine and MdDS, but it is not that important to make this distinction since the treatment is very similar. Zoloft is not an effective drug for migraines of any kind or MdDS. Rusk is the best place for vestibular rehab and they often refer patients with migraines to us. Yes, it might be worth coming in for a consultation. We use intravenous magnesium and various supplements. You may also want to try acupuncture. As far as prevention, if you have magnesium deficiency (RBC magnesium is the test to do) taking it orally or in monthly infusions could help. There are many other possible options, such as isometric neck exercise if there is neck muscle spasm, etc.

I haven’t been diagnosed with Mdds but feel like I may have it. I went to a neurologist at The Headache Institute at St Luke’s – she is convinced I have Vestibular Migraines (history of migraines and Jan -Mar – intense rocking/bobbing/swaying) and wants me to go on Zoloft. I tend to stay away from meds. I have been seeing a great CBT and doing VRT at Rusk Institute at NYU and have been doing much better (monthly long car trips Dec – Mar unfortunately timed with my monthly cycle). Since I am feeling better (not 100% – computer still bothers me and sitting still is uncomfortable – I walk a lot everyday and move around – feels best) do you think a consultation with you would still be beneficial? Can you prevent these symptoms from returning? I am headed on a family trip to Europe in August and concerned about long flight and driving (although I did fly cross country in April – symptoms were no better or works from trip). Please let me know your thoughts. I feel if my symptoms increase I will definitely come see you but wondering if there is anything to do to prevent. Please let me know your thoughts.

Yes, magnesium can be very effective for muscle spasms. If tablets don’t help, ask yor doctor about intravenous magnesium. You can also ask to have your magnesium level checked, but it has to be “RBC magnesium” and not serum magnesium.

Hello Dr. Manuskop -I recently was diagnosed with MdDs after 3 trips to urgent care. I was only on a floating dock for 4 days, about 3-5 hours per day. I’ve had symptoms on other occasions -all after trips that involved snorkeling and boat rides, but they were only minor and went away after a few weeks. However, each time it has gotten worse. For this episode, I have had the symptoms for about a month and counting. When I’m not on medication, I feel mostly muscle spasms. I have most of my balance back but the muscle spasms are a 24/7 thing. My neurologist calls it a vestibular migraine and prescribed anti-depressants. I also have and MRI scheduled, just in case this is something else, but I highly doubt they will find anything. Most of my muscles spasms occur in my head -sometimes it gets to the point where it feels like I’m on a verge of a seizure or stroke. I make worse because I can’t ignore it while at work. The anti-depressant I was prescribed makes the spasms go away, but my balance is effected. Its like when I feel balanced, my spasms go wild; If my spasms are gone, my balance is off. Has any of the supplements helped your patients with muscle spasms? I don’t get headaches, but I am very stressed about it and it is making me depressed. I would really appreciate your expertise.

Many patient require magnesium infusions monthly and some need them even more frequently. So, if symptoms return, you many need another infusion. Vitamin B12 injections can also be useful, especially if the blood level is below 400.

I had a magnesium infusion (my Neurologist ordered this per my request after seeing your positive results) and it really helped with the fatigue that I was feeling. I have had several good weeks (knock on wood) since then. Hate to brag when I’m having a good day because it can come back with a vengeance as many of you know. It also helped my with the recurrent headaches.

I was recently diagnosed with Mal De Debarquement after an 8 day cruise in March…I also have Granuloma Annulare Barbara, which has started about 6 weeks ago and I have been seeing the Dermatalogist but they didn’t know what was causing it so now I can show them what I think the source is – thank you for this messsage board…I will be trying the supplements next since I too can not take the meds and function at work…my condition only seems to bother me when walking or if I move quickly back and forth like in the kitchen.

If fatigue is the only symptom, it is probably not due to MdDs, but another cause, such as a vitamin deficiency, chronic fatigue syndrome, chronic infection, and other.

I have been diagnosed with Mdds for about 10 months. I am on an anti-depressant and a small amount of clozapham. I am doing physical therapy for neck pains and vestibular exercises. I have seen many specialists, etc.

My major symptoms today are fatigue which cycles somewhat over days and sometimes a week or so. Is that common for it to come and go. I have taken a leave of absence from work as I can wake up go to work and a few hours later be sick and very fatigued. Is that common.

It is the cycling of the problem which I can not seem to get a straight answer from anyone. I would like to know if that is normal. Also my dizziness which began 10 months ago has pretty much disappeared but the other symptoms described continue. Thanks

Yes, it is possible that magnesium and vitamin B12 will help, but unfortunately I cannot give specific advice to people I haven’t seen.

Hi doctor, I recently returned from a vacation in Mexico to Michigan. Since getting off the plan I have been experiencing bobbing, difficulty concentrating/focusing and fatigue. It is really affecting me as I have a 11 month old and I feel like even though I am with her, I can’t actually “absorb” the time with her because of the brain “fog”. When we left Mexico I had some diarrhea and still seem to be having some on and off. Could I be deficient in magnesium and b12? Would taking oral supplements help if that were to be the case? I find my symptoms are less upon first waking and get worse throughout the day. Is that common?

Yes, any of the activities could have caused MdDS. Keep in mind that you need to check RBC magnesium and not the serum magnesium and for vitamin B12 a level below 400 and not 200 is abnormal.

Hello Dr. Mauskop. My ENT Dr. whom I have another appointment with in a few weeks, suggested 2 months ago that I have Mal De Debarquement and that I should come back in a few months if symptoms are not better. Mine started a year ago, I am a very active fit individual, but am struggling with this unbalanced nonsense and frankly, I am growing frustrated by the day. It has been a year as I stated above, I was doing alot of bobbing and weaving during my boxing routines, (there was no contact to the head, just boxing training for cardio) and I first got the symptoms when I was on an eliptical machine, which also goes up and down. My symptoms are like the individuals have stated above, and it seems that they strike after a car ride, and when I go into public. I also have GAD from an accident I was in which I am being treated for. I have switched to 15mg of valium a day after being on around 1 mg of klonopin a day. My question is, could i have gotten the syndrome from the boxing training which was very vigorous, as well as being on the eliptical machine. Symptoms include, walking on a trampoline or mattress feeling, weaving, bobbing up and down and a sense of movement, even when sitting or lying down. Im also prone to major sinus infections. I will be trying oral magnesium supplements as well as getting my magnesium and b 12 levels checked out. I would love to hear back from you, Im only 21 and am looking forward to hopefully finishing up college on a good done. Thank you.

You are right, you would not develop a deficiency from being on the boat, but it is possible that these symptoms are more likely to occur in those who are deficient to begin with. We do know that up to half of migraine sufferers are deficient in magnesium and a third in CoQ10. The evidence for other supplements and herbal products is not as strong, but the side effects are much less likely than with drugs.

Returned from 7 day cruise, my first, in January 2014. Was ok when we disembarked to the various islands, but once off the boat for a day, I started to experience swaying/rocking. This continued non-stop for about 3-4 weeks. Now it comes and goes. I also experience blurry vision/problems focusing my eyes on objects, I am more sensitive to light and sound, I feel numbness in my face (around my eye area), and I have problems concentrating and at times finding the right words. I have had a few migraines and while some of the symptoms are similar, the swaying/rocking are not. Several people have suggested that I see a chiropractor that they can “reset” your brain my manipulating your body. Others have suggested I stand about six inches from a wall, lean my head against the wall, and keep my eyes open for 15 minutes a day for several days, that this too will “reset” the brain. I’ve yet to try any of it, as the symptoms to seem to go away for a while, and then I hope that I am over this. But, as of almost 6 weeks post cruise, the symptoms continue. This is so debilitating. It makes sense to me that the brain would need to be reset, and not that a person was deficient in a vitamin or mineral, as this seems to happen often to those returning from a cruise. Why would the cruise make a person deficient? It seems to do more with the motion. One person said it was because I wore flip flops on the cruise, explaining that when you wear flip flops your toes clench together to try to make you more stable, even if you don’t actually notice the motion of the ship??? It is so nice to see that there are other out there enduring the same thing that I am.

The New York Headache Center is located at 30 East 76 Street, on the Upper East Side of Manhattan in NYC. I do written consultations with record reviews through BestDoctors.com.

Thank you for your candor Dr. Mauskop. I will read through the comments again regarding the supplements. Just not sure on the oral dosages. Where are you located? Do you do records reviews or phone/video consultations?

Unfortunately, I cannot give individual advice to people I haven’t seen in person. However, you can some ideas from reading all the comments and discuss these with your doctor.

Thank you doctor for this ongoing stream. I have recently been diagnosed and am completely overwhelmed. First the doctor put me on Valium while I could be set up for balance testing and with the vestibular therapist. I am now doing therapy and have been put on Zoloft and Buspar. I have only been on these medications for about a week now and have not seen any improvement. Please let me know what you suggest. Am I OK to start the supplements you talk about above with these prescription medications? I am desperate. Thank you.

Dear Kylie,
I read your message to Dr. Mauskop. I want you to know I hear you, I am touched by your challenge. Your concerns about your boys is heart rendering. I too am dealing with MdDS. I am doing much better and I want you to be aware of that for yourself. I can share with you what has been helpful for me and what has not. But, we are all unique and we all respond differently. You discussed magnesium in your comments. I found Calm, a magnesium drink, very relaxing. Unfortunately, my stomach could not tolerate magnesium in any form. But, I recommend you try the Calm. I have been on several meds with mixed results. I am very sensitive to drugs and have found it very hard to withdraw from prescription meds. But, again, your experience will be your own. I take Alpha Lipoic acid (ALA) and I found this helpful. Again, my sensitive stomach was an issue for me. I now take the ALA in combination with Acetyl L-Carnitine. I’m not sure how much it is currently helping me but it’s not a problem for me. Supplements are unregulated and they are not all created equally, so be careful. The company I use is called Juvenon and can be ordered online. I also take Omega-3 fish oil 1000 mg 3x daily. I order this online from Puritan’s Pride. I take the supplements with food to avoid stomach upset. I hope Dr. Mauskop won’t mind my saying I am his patient and I have learned of these supplements from him. I won’t tell you what prescription meds I have taken because I neither want to encourage nor discourage you in this regard.

It is important to have emotional support. Good friends are the best medicine. Avoid negative people and those who don’t treat you respectfully. It’s ok to ask for help. If you need help caring for your boys seek it out. You need to take of yourself to take care of your sons. This is always true for all moms in any circumstances.

Just as supplements are not all created equally, neither are drs. Try to avoid dr. hopping. I didn’t and some of them were, to be as kind as I can be, not helpful. Try not to doubt yourself. And, know that those who will doubt you are expressing their own human limitations. You can only do your own personal best and this will vary from day to day. Believe in yourself and you will discover strength you never knew you had. I hope this note will be helpful to you and if not just disregard it! What you are going through is just for now, it’s so hard but try not to worry! I wish you hope, courage and peace!

Thank you so much for your reply. I really appreciate it. I’m trying to gather as much information I can. I have accapuncture appointment tomorrow and neurologist today. I will get magnesium tablets today also. Thanks again . Kylie

You can ask either one, although very few doctors in the US given IV magnesium in the office. Patients sometimes go to urgent care facilities to get an infusion. Taking magnesium daily in a pill form or in a drink can also help.

Sorry I wrote my comment in the name section! I am 36 from Australia. I went on a 2 day cruise almost 6 weeks ago and have been in motion ever since. I am struggling to function. I am desperate for this to go away. I have 3 boys to look after which is so hard in this state. I had a migraine on the cruise and took mersindol and codeine for it. I wonder if taking the medication the migraine is a reason why I have ended up with this. I am seeing a neurologist tomorrow for tests. Can you tell me if I see my Gp for the magnesium injections or do I ask a specialist or my neurologist.? I am willing to try anything to make this horrible sensation go away. I need to be able to look a after my young family.

Hi Joan,
The names of the supplements are curcumin and resveratrol. Since you are my patient and I’ve seen you before you can call me and we can discuss all of this in detail.

Dear Dr Mauskop,
I continue to slowly decrease the gabapentin and as you suggested I am utilizing the services of a biofeedback therapist. Since my last communication I believe my mdds symptoms have continued to decrease. I have had an exacerbation of head pain and significant increase in intra-oral mouth pain. I am aware that decreasing the gabapentin may be contributing to my increased pain. It has been suggested to me by both my physical therapist and my facial pain specialist that in addition to complications from the 4 herniated discs I have in my neck I very possibly am experiencing pain related to the trigeminal nerve. Please share your opinion with me regarding this.
Also, I have learned of 2 supplements I would like your feedback on. I hope I spell them reasonably well. They are Kercumin and respiritol. I am also somewhat concerned about the Juvenon I have been taking. I understand either the acetyl L-carnitine or the Alpha Lipoic Acid have been known to cause tingling in the mouth. I have been experiencing tingling of the lips for some time now and wonder if this can trigger the more intense mouth pain I experience on a daily basis. Additionally, I have heard some new concerns about taking Biotin which is in the Juvenon in a significant amount. I do not know the specific concerns. As always I am grateful for your feedback.

Hi Kelly,
Thank you for sharing your experience- hopefully it will help others with MdDS. Yes, it is possible that phendimetrazine is helping your symptoms, although in another person it could possibly make them worse. It is a stimulant and can cause anxiety, insomnia, dizziness, and other side effects. It is also potentially habit forming and is recommended for short-term use.

Hi Dr. Mauskop:
I have had MdDs (self-diagnosed) on and off since I turned 40 (I am now 50). We went on a short 4 day cruise for my 40th birthday and when we returned I never regained my “land legs”. I was constantly rocking and rolling for about 6 weeks and then the symptoms began to subside and eventually went away. I have had minor bouts with it over the last 10 years but remained relatively symptom-free. I do take a Xanax before flying anywhere now as I am an anxious flyer and get a bit claustrophobic in an airplane. It definitely helps. However, in July 2013, I took a trip to Durango, Co (I live in FL). I experienced a little bit of rocking (sometimes I call it floating) when I first arrived but the symptoms went away by the next morning. On the 3rd day, we took a 4 hour train ride and the rocking came back full force and continued for the next 2.5 months. In Mid-September I was put on Phendimetrazine (35 mg) to help me lose some unwanted weight and my symptoms began to subside. I have been on them almost 2 months and am symptom free again. I don’t take more than 1-2 a day and some days none. I have a history of mild depression and anxiety. I take a very low dosage of Wellbutrin (150 mg) per day. I am a type A personality and a worrier. I am always on “high alert” that the symptoms will return. Do you think the Phendimetrazine is effecting my brain in a way that is relieving my rocking?
Kindest regards,
Kelly

Hi Casper,
Unfortunately, symptoms of MdDS can come and go, but the diarrhea suggests it is possible that you have other contributing factors. It could be vitamin B12, magnesium or another deficiency and/or gluten sensitivity or one of a range of possibilities. Cognitive behavioral therapy and other approaches you can read about in this discussion may be also of help.

Hi dr Mauskop. I am a 23 year old man, WHO has experienced this feeling after a 2-days boattrip more than 3 years ago. All my doctors cannot come up with any diagnosis, and I just randomly found the symptomps of mdds. I have had the rocking feeling 3-4 times now in an interval of 3 months. It recently came back after more than a year of full recovery. I have not been on a boat since, so this should not have caused the problems again. When I have this I am scared of the future with this disorder. So there is som kind of anxiecty involved. I Foundation that it is almost only women who experience this syndrome. I have problems concentrating and for the first time i Got nausea. I have not Munch appetite, and is feeling ‘full’. I had some diarré at the same time. Can another sickness make it appear again? I have maybe been a little stresser as well. Is there a opportunity, that this can makemit come back again. I have ben feeling extremely tired now, even though I sleep 10 hours. More than a year ago I felt tired for more than 6 months. Hope you Got time to answer me!

Best regards
Casper from Denmark, 23

I am glad that I could help you with the main symptom of MdDS, rocking. Anxiety and depression can sometimes take on a life of their own even if the underlying medical condition that triggered it has resolved. If you want to eliminate or at least minimize your psychiatric drugs I would suggest finding a psychologist who specializes in cognitive-behavioral therapy (CBT). There different subtypes of CBT and you have to find a psychologist you can connect to.

Dr. Mauskop my rocking is much improved. I am struggling with anxiety and depression. I am taking .25mg of klonopin and 600mg Gabapentin spread out over the day. I also continue to take fish oil, alpha lupaic acid and acetyl L carniteen. I do not want to increase psychiatric drugs and hope to come off the Gabapentin completely. After slightly over two years although I am much improved I am emotionally exhausted from this condition and the impact it has had on virtually all aspects of my life. I believe the anxiety and depression I experience is part of the mdds syndrome and not simply a response to mdds. What is your opinion on this? Is there anything on the horison in terms of understanding this condition and in treating it? Thank you

l have just been told that l have MdDs, knew nothing about it. went on a crusie last September and got this with in a day of being home, friends can not understand what l am going though and its so helpful to read about others that have the same things. l have been ask to go to spain but am not sure if this will make my mdDs worse.

hi,i was diagnosed on thursday with mdDS.after 7 and half years of test.the doctor at the hospital has written to my G.P. to tell him and for me to try tablets i dont know what ones yet untill i pick them up.will let everyone know how i get on!!!!

MdDS manifests itself differently in every person and just like with migraine and other headaches there is no way to predict its course.

Oral magnesium can cause diarrhea and stomach pains, but intravenous infusion does not do that. If magnesium infused too fast, some people get faint and nauseous. People with serious kidney problems can have serious side effects from too much magnesium and should be followed closely with blood tests by their doctor. Vitamin B12 does not have any side effects, although tablets of B12 sometimes contain aspartame, which can cause a reaction in sensitive individuals..

Standing on a dock in choppy water is the most predominant sensation that I suffer with. However, I have also experienced loss of word recall, neck spasm, headaches, and some brain fog also . The last treatment I did was the Clonazepam .5mg 1 daily made me too tired to work. So I stepped down until I was off it completely. It did reduce the symptoms, but I needed my brain working a full capacity for my job. My experience with MdDS is that it comes and goes, or that the symptoms are so reduced that it does not require anything else except to ignore them. However, I have been struggling with more intense sensations than I have had in a while, thus the renewed interest. My interest is piqued with the thought of the magnesium + vitamin B injection. My question is…are there any side effects?

So with these findings Dr. Mauskop, how do you believe treatment will progress?

Researchers from the Ohio University just published a study in the Journal of Clinical Neuroscience entitled “Effects of persistent Mal de debarquement syndrome on balance, psychological traits, and motor cortex exctiability”. This is one of very few scientific studies of this mysterious condition. Eight patients with MdDS were compared with 8 matched healthy control subjects. Results of this study suggest that patients with MdDS exhibit impaired postural stability, high levels of kinesiophobia (fear of movement), and fatigue. The authors observed that patients with MdDS had abnormal electrical responses in the brain. In addition to discovering important scientific findings, this study provides proof that MdDS is not a psychological disorder, but in fact a real disturbance of the brain function. This may help many MdDS sufferers to obtain more support by convincing their doctors and family members that they are not suffering from a psychological disorder, but from a real medical condition.

Hello,
I have had MDDS for about 20 years now off and on but have not been officially diagnosed by a doctor. The first time it appeared I had been on a 7 days cruise. The symptoms of rocking and swaying were mild at first but got worse with time and lasted for about 6 months. Thankfully they went away and did not come back for about 12 years. It seems as I get older almost any movement can set it off for a few days to weeks. A ride at Disney, a long ride in the car or a plane ride. Also I have spent a few vacations at the beach and can not even stand in the waves because the motion of the waves has set MDDS off for a few weeks at a time. I have to be very careful what I do as I am afraid it will come back and not go away. I recently flew to NY for a few days and am now going on 2 weeks with the rocking and swaying back again. I think it is also the accumulation of movement that sets me off. plane ride, cab, subway, train. It just seems like it gets worse with each new transportation. I also have an unexplained skin condition Grannuloma Annulare, autoimmune. Does anyone else have GA, thyriod problems, trying to look for some type of connection.
I do notice that when I am tired the sensation is stronger. Looking for answers.
Sincerely
Barbara

Yes, it is not unusual to be swaying and rocking with mdds, although most people do not. Brain fog, fatigue, and word finding difficulties are also not that unusual with this condition. Many people also get depressed and anxious, which makes other symptoms worse, causing a vicious cycle. So, sometimes treating anxiety (for example with clonazepam) or depression with antidepressants can help the rocking sensation as well.

Hello,
I was given the MDDS diagnosis two years ago. After seeing 4 neurologists and had an MRI. I don’t think the Valium helped. The symptoms went away over time. They have reoccurred several times over the years. My symptoms seem to differ than anything I can find though. I have loss of balance, fatigue, Brain fog, difficulty with words at times, but I also physically rock and sway. I can suppress it somewhat, but then the fatigue is worse. Has anyone ever heard of someone physically rocking and swaying?

Hi All,

2 months ago, i began to feel like a several second earthquake would happen once a day. Over the course of 2 weeks the feeling and frequency intensified. Depression, anxiety, blurred/unfocused vision also appeared, reaching a point of near 24×7 symptoms. My ENT ran me through the vestibular gauntlet and i passed with flying colors. He suggested MDDS as a possibility, but i decided to not read up on it, not wanting to try to self diagnose myself. While waiting a few weeks for first time patient entry to my neurologist, i have been looking for related symptoms on the web, and many posts pointed to MDDS. Many symptoms clicked, however I’m now determined to prove via elimination, by taking the required tests to eliniminate other possibilities. This all started after leaving my boat after a 10 day trip (i live and work from a boat about half the month, have done this for several months without problems, and havent had seasickness nor sealegs while back on land in the past).

The good news is that two weeks ago, i asked my PCP for an anti-depressant as I felt my life came to a complete standstill. 10 days after starting the 20mg/day Paroxetine, i woke up symptom free for the first time in 2 months, and even though symptoms return later in the day, they are much abated, more like small tremors in my extremities, rather in my head and chest. I definitely feel like i can function in this state, although its still extremely annonying. Has anyone else had such beneficial improvement with anti-depressants?

Btw, saw the neurologist for the first time today. Arranging MRI and he was open to the MDDS possibility (if he wasn’t, was going to find another). Will continue the arduous path. My hopes and prayers with all with this affliction.

Hi all,

I believe I may have this. I have seen Dr. after Dr with no diagnosis for whats been going on. I have had MRI’s, nerve tests, Ct Scans… You name it, they have put me through it. I started Physical therapy last week to try to get my balance back and yesterday my Physical Therapist brought out a book and scoured the pages. He found this syndrome. I have tried every medication with no relief. Its been 11 months now and still just as bad as the day it started. I have even relocated from the Gulf Coast (Texas) to Arizona hoping the change in climate and elevation would help. I have days that are better than others but for the most part I suffer 24/7. Im exhausted and frustrated. I will be printing every bit of information out and taking it to my next Neurology appointment.

Hi all:
I have been suffering from this for going on 5 years now. I have not found relief from anything medical. I have done it all and seen every specialist known to man. I am on permanent disability because of this condition.
I am turning towards alternative means. Doctor can you tell me where I can get these injections at? and how many mg of magnesium you recommend?

Thanks Dr. Mauskop, keep the info coming the more info out there the better chance a “cure” can be found. I will be taking this info to my neurologist next week. I haven’t noticed much with the magnesium yet, but I am also on BHRT and my levels of estradiol ang progestrone are still really low. Fingers crossed for better days!

Just heard from one of my patients – she has significant improvement in her MdDS symptoms from taking alpha lipoic acid, 300 mg twice a day.

Thank-you Dr. Mauskop for responding so soon after my post. I have seen my neurologist and started with magnesium (glycinate per Naturopathic Dr. more easily absorbed) and I am hoping for the best! Please keep the updates coming that is the only way we will get relief for this horrible condition! I am also seeing a Chiropractor for sore and stiff neck.

One of the last two patients is feeling better, but not free of symptoms, while the other one is unchanged.

I was diagnosed with MdDS in May 0f 2011, currently taking Klonopin .5 mg halved. I take 1/2 morning and evening, for the first 2 months it helped but then symptons slowly came back. My neuro otologist does not want me to up the dose so I struggle to get through each day. One support group suggest that it is hormonal. I too would like to see updayes regard how the patients are responding to your treatment. Thanks

I was diagnosed with MdDS today. A 5 hour fishing trip changed my life. I will start therapy within the next few weeks. I am cautiously hopeful. The magnesium supplement sounds very promising. Dr. Mauskop, please keep us posted on the progress of your treatment.

One patient returned last week and reported that she remained significantly improved for 7 weeks after an intravenous infusion of magnesium, a vitamin B12 injection, and on several supplements. However, during the 8th week she developed a severe cold with a fever, which set her back and made her symptoms worse again. I gave her another infusion of magnesium and another vitamin B12 injection. The second recent patient has not yet returned for a follow-up visit.

I had the same exact “floor falling underneath me feeling” after a trans-Atlantic flight, and I, too, thought it was jet lag. I’ve was diagnosed with MdDS 5 years ago but my doctor is unable to provide any relief.

Dr. Mauskop, can you provide an update on your treatment of these two patients? Have they achieved full remission?

Exactly a year ago I came back from a business trip only to feel a strange “floor falling underneath me feeling” I first assumed I was just jet lagged and needed a little rest,after much rest countless doctors visits and two MRIs I realized that something was very wrong. I should mention i am a 32 year old healthy female with two kids. The neurologist I saw told me I had a vestibular disorder and my symptoms should disappear over time, well a year later I’m still dealing with an unbalanced feeling I can’t even wear high heels without feeling like Im going to topple over. Oddly enough when I am either running or driving I feel normal. Within the past few weeks I have been getting panic attacks when out at the mall or supermarket it seems to happen when my eyes are looking at too many things. I only realized the other day while watching “Medical Mystery” that this women on the show had the exact same symptoms as myself and finally she was diagnosed with Disembarkation Syndrome. If anyone has any answers please help.

Sincerely,
Christine