This is a long intro but I thought the chain of events might help explain my confusion, etc.
This past June/July I had two episodes of intense vertigo. I also had left ear pain so I went to my PCP. He noted impacted ear wax which he could not remove so he referred me to an ENT. The ENT was baffled about my vertigo but did say I did NOT have BPPV but wasn’t sure if the etiology was MS or some other pathology. So the ENT referred me to one of his partners who is a neuro-otologist.
I had the appointment today with the neuro-otologist. He has an impressive CV and he actually treated my son some 13 years ago at the academic hospital where my MS neuro is located. The doc is from Croatia so his accent made getting the information straight in my head even more difficult.
This is what he said after doing the Hall-Pike, Romberg and several other tests and comparing it to my descriptions of the different types of dizziness under different conditions. I have a rare form of migraine which gives me the underlying feeling of being on a boat . It is called Mal de Deborquement Syndrome or MdDs for short. I goggled it and found a site dedicated to this disorder/migraine variant. The doc on this website ran the dizziness clinic which dx me with dizziness due to a migraine variant 4 years ago.
He also said that my description of the vertigo where I fell and hit the tiled bathroom floor was BPPV because the sensation was gone in 15-20 seconds. MY MS neuro dx it as a MS symptoms and ordered IV steroids.
The second bout of vertigo was more intense , enough to keep me bedridden for 4 days and won me another round of IV steroids because I could not stand up. The neuro-oto was unsure what caused this round of dizziness/loss of balance. He ordered a VNG and a follow-up appointment with a hearing test for October.
Now for the confusion. I understand that I can have more than one thing wrong with my vestibular apparatus and my balance. What really hit me was what the MdDS site said:
Mal de Debarquement Syndrome (MdDS) is a rare balance disorder that most often develops following an ocean cruise, other type of water travel, or motion experience. For a few, there is no known motion event; the onset appears to be spontaneous. MdDS persists for months to years. Common symptoms include a
persistent sensation of motion such as rocking, swaying, and/or bobbing. This sensation of motion is often associated with fatigue, difficulty maintaining balance, and difficulty concentrating (impaired cognitive function).”
This description sounds very much like symptoms of MS. However, he pulled out one sheet of my MRI films I had brought with me and told the woman typing his dictation into the computer, “Definite areas of demyelization noted on MRI of 11/08.” Other findings were a positive Romberg , mild ataxia and mild succades(?), no nystagmus noted. So, do I have cognitive dysfunction and dizziness from MS or MdDS?
My MS neuro doesn’t believe my dizziness is from migraines as it occurs frequently. However, he just has a neurology degree unlike the doc today who has neurology and otolaryngology.
Ok, anybody have any thoughts on this? Anybody every heard of MdDS?
Forgot what I thought was THE BEST comment of the entire visit. He said migraines DO NOT cause changes to the MRI such as mine. Funny...it took 3 years for somebody to have the guts to claim it wasn't migraines, it was MS. This guy made that observation, and stuck by it when I commented on it, in less than one minute. Excellent validation. Would love to have the neuro-opth who claimed I had migraines and I didn't have MS and told me to stop my Copaxone hear him say this!!!
Ren, that neuro-oto sounds wacky. I would not put much faith in what he told you. He is saying you have this extremely rare condition with symptoms that can also be caused by MS, when you already DO have MS??? I mean, how likely is that??
You quote the web site as saying:
"Common symptoms include a persistent sensation of motion such as rocking, swaying, and/or bobbing. This sensation of motion is often associated with fatigue, difficulty
maintaining balance, and difficulty concentrating (impaired cognitive function).”
Well, yes, that's a precise description of what many MSers feel. Maybe you have Mal de Debarquement syndrome *caused* by MS. There has to be a reason for it.
Actually, maybe I have this too. I don't believe it's the result of migraines, and anyway there's no proof that that sickness is, it's only a theory. I've had the rocking boat effect since this past Feb, and it's my 3rd go-round with it. It only happens when I'm up and walking, and I think it's a problem with getting my bearings in space. (PastorDan wrote a very good post on this feeling a few weeks back.) A few months ago I had a VNG test which came back abnormal, and no one suggested I had a rare disorder when there was a much better explanation staring them in the face.
I know exactly what you mean about going to a doctor for a simple problem and then getting caught up in a whirlwind of conflict, with no plausible answers. I have a similar situation with my throat.
In the final analysis, what matters is getting some relief or living more comfortably with this. I'm not sure what meds even work for it, but I suggest you talk to your neuro, who does know you have MS. I try to ignore my vertigo and mostly that does work, but yours might be worse. You need relief, not confusion.
Wow, far to complex for my simple (and damaged) brain. I often think that the more opinions we seek the more answers we get and that is confuinge.
I work in a University with many PhDs and Professors, if you put 10 of them in the room and give them a question you would get 10 different answers and yet their specialist fields are all very similar. However, their experience and knowledge and perceptions are all different.
I know this has not helped a great deal but just wanted to say that although all these medics have similar education the perceptions they bring to the table are biased by experience, etc. Many also have huge egos - lol
I just hope you find some answers and some peace soon.
From what I do know Vertigo is one of the hardest things for Doctors to diagnose and treat. Some of mine comes from inner ear crystals and some of mine comes from my neck muscles getting too tight.
Curious and curiouser! I had my first MdD experience when I was 10 yrs old after fishing from a floating pier for 2 days. It lasted 2 weeks. It was also the year I had my first serious episode of depression. I've had both maladies numerous times since.
Could it be I've had MS since I was 10? Or is it just coincidence? Hmmm...
I'm pretty sure they'll soon tell us that baldness is a form of migraine.
I think my sense of stability is enhanced when I have multiple points of contact with relatively stable surfaces, especially when those points are spread out, such as when my feet are on the floor (preferably spaced apart somewhat) and I have a hand (or two) on a wall or a desk. If I am standing erect on the floor in space, I don't think I'm as comfortable with my ability to keep from falling, in any direction. I am most comfortable when lying down. Even that is better on a firm surface than on one that gives a lot. I can't remember when the last time I was on a boat might have been, but I am sure it's been quite a few years. I do recall feeling pretty good in a hammock, once I got the swing of it. ;>)
Thank you for your thoughts. many of which I plan on using when/if I present this tomy MS neuro whom I like and trust immensely.
Yesterday I had another type of vertigo onset. I will be curious what neuro-oto doc chalks this up to. I have begun to have tinnitus in my left ear...usually a high pitched whine which is more recently is followed by a brief 15-20 sec muffled or blocked sensation in that ear. When it occurs it is followed by a period of very brief disorientation most likely from the sudden deafness of my left ear. I tried 3 times to explain this to the neuro-otologist and his repeated response is we will give you a hearing test. Actually this tinnitus and accompanying disorientation is now my most troubling symptom. When it occurs it feels as though I have been dropped into the middle of a huge room filled with people talking and I don't know the language.
It happened yesterday when I was on my cell phone while walking in my home. The tinnitus and disorentation occured then when it had subsided I had a brief episode of vertigo and had to grab the door jamb to keep myself from falling. None of the previous vertigo episodes was connected to the tinnitus.
My personal opinion which may be totally off the wall is my 8th cranial nerve is misfiring causing all of the trouble, since it is the nerve associated with hearing and balance.
Whatever this mess is needs to subside or be defined and dealt with. It is driving me nuts...I know it 's only a short trip in my case. :-)
you just described the symptoms of meniers disease with the exception of ear fullness. does your ear feel like it is full? look up Meneirs disease (an inner ear disease) and see if this sounds like your symptoms.
I did think my symptoms would fit those of Meniere's disease but because I do not have any known hearing loss, the first ENT ruled it out. Funny since it is a disease of exclusion if you read the road ot diagnosing this. However, the treatment is diuretics and low salt diet, etc and I am already on that due to hypertension.
My MRIs show no evidence of pathology in the ear region. The neuro-otologist discounted it too but I'm not sure why. He just said it would be considered but that I don't have it. I do believe that they may not be seeing the forest from the trees because of the MS dx.
Do you have any experience with Meniere's or know someone with it?
I have been diagnosed with it recently. I have minimal hearing loss that showed in testing but i had not noticed it. I do have the dizzies, veritog, and off balance as well as ringing in my ears that comes and goes. I ahve episodes of sound distortion that i can best describe as muffelled sound that comes in an out. They diagneosed me after doing an eng test in which they test your vesitbular system by putting warm and cold water in your ears. A normal reaction is extreme vertiog. I did not have vertigo on the left ear whcih they said means i have meneirs.
Recently I have felt shaky on the inside and weak so they are looking further into MS even though my MRI was normal. That being said who knows what I really Have. I ahve been doing a lot of reading about Meneirs and your symptoms sound similar. I think you should ask your doc to do a eng test.
Thanks for expande information. The neuro-otologist is doing another VNG. I had one done 3 years ago and it was negative (normal). The sound distortion sounds very familar. He didn't mention doing the calorics( water in the ears) but the paper for the follow-up did mention it. Guess I 'll have to wait until then to see how much he does.
Thank you so much for extra information! I will definately ask about it when I go back in 2 weeks.
I hope they can figure out the rest of your symptoms as well. Do you have a good neurologist who is willing to rule out all of the mimics of MS? Some have had normal MRIs initally and still have been diagnosed dependant on other test results.
I had an ENG as one of my first diagnostic tests for this illness. A couple of months or so later, another doc ordered a VNG. Both the audiologist who did the first test and the Doctor of Audiology who did the 2nd said that the neuro's contention that the VNG is more accurate than the ENG was kind of iffy. I noted he (the neuro) owned the hearing lab, at least in part.
In both cases, they did the hot & cold things with air rather than water. Oddly enough, during the second test, despite my distinct sense and clear verbal report that heating one ear made me much dizzier than heating the other, the report specifically stated that the caloric responses were symmetrical and normal. Go figure. Sure wish I could remember which ear was worse.
A coworker insisted early on that I have Meniere's, like the diagnosis that he was given a number of years ago. The audiologist, whom I believe I can trust, tells me that she is certain I do not, though she quickly caveats that by noting that she's not a doctor and can't legally tell me that I don't have Meniere's disease. She's seen it more than once, though, and my responses during the ENG didn't resemble it at all, in her opinion.
Thanks for the info regarding the Meniere's disease and testing. I am scheduled for a follow-up with the doc about a week after the testing. Perhaps I can get the audiologist to give me some info regarding my tests and Meniere's prior to the Neuro-otologist follow-up.
Although the VNG isn't scheduled until the 26th, which is fine since there's a long list of meds you cannot take for 48-72 hours before testing and it includes my drug for spasms and my sleep aid. The one drug I need to taper off so as not to cause any further problems. It's always something............... :-).
Wow, I have so much to say about this whole thread! First, Ren, your description of the brief dizziness after striking your head is classic for BPPV. BPPV is thought to be due to the knocking loose of crystals in the semi-circular canals of the inner ear. The crystals are normally stuck to the tips of hairlike structures and as you move your head the crystals wave back and forth. The nerve input fromt this motion is how you know exactly how your head is moving - up, down, around etc. If the crystal floats freely the fluid in the ear moves more violently and may give the feeling of falling or moving a 100mph. And the sensation typically lasts 15 to 20 seconds. However, you may feel off for many hours after the actual vertigo has passed.
My vertigo doctor was Dr. Epley of the Epley Maneuvers, which were the first successful way to treat and mostly cure BPPV.
The MdD is coincidentally what made Dr. Epley interested in neuro-otology in the first place. I don't think the neuro-oto that you saw was completely off-base. I think his assessment of BPPV was spot on, but calling the other MdD and saying it wasn't related to MS is likely wrong. Other specialties often don't realize the huge number of ways that MS can affect our sensory nerves. I agree that this syndrome is most likely due to your MS.
Your description of the ringing in your ear followed by a muffling of hearing followed by a disorientation is EXACTLY what I have had periodically for my entire life! For me, I get a high-pitched tone in one ear, then a muffling of my hearing and then it feels like my world tilts on its axis - like "down" has changed. I have to accomodate to the new orientation over the next 15 seconds or so, almost like the direction of gravity has reset. I think it is an inner ear phenomenon, so it would not be a function of MS.
Sorry this is so late, and I hope it helps. I don't understand all the nuances of Meniere's Disease so I can be of help there. The best test as I understand, is the ElectroCochleagram or ECog. I had one done, but they are difficult to do and depend heavily on the skill of the technician and the ability of the patient to be patient (??) and relax. Also, the interpretation can be variable. Though, when it is a clear positive you have real info.
Pastor Dan is correct at the hundreds of ways the balance system can go awry. The inner ear (peripheral nervous system) and the brainstem (central) all interact with the visual system (central) and the information from the proprioceptive nerves in incredibly complex ways. The best you can do sometimes is a "best guess" after all the testing has been done.
I would have to agree that the VNG (short for VENG) is more accurate than the pure ENG. The VideoElectroNystagmoGram gives the doc one more piece of data to see lesions. When the electrodes are used alone they can be messed up with muscle tension and other movements of the eye. On the Video they can see your iris the full size of a computer monitor and on tape. I used to listen to Dr. Epley describe the direction of any nystagmus, the character of saccades, rotational movement and then deduce which side and which particlular semi-circular canal was involved.
It's good to see you back! Thanks for the response.
For clarification, the episode in June when I fell did not invovle me striking my head but did only last 15-20 secs so by definition it fits BPPV.
For the last 10 days I have been felled by another round of vertigo. This is not just 15 seconds of dizziness or vertigo . This is/was 24/7 of the room spinning and an inability to stand upright without assistance. Then to add insult to injury, after day 3 of this attack I had to start weaning off my meds that might interefere with Saturday's VNG. This only served to intensify the vertigo and accompanying nausea. The good news, I lost 5 pounds.
Since Saturday, I have started to titrate my meds back to their prescribed levels. As soon as I began taking the Klonopin, which I take for muscle spasms and does suppress nystagmus, I noticed a lessening of my symptoms. Now, 4 days later I can actually stand alone and can see the computer screen and type without becoming nauseated. This vertigo was also accompanied by an increase in nausea with just eye movements even with my head in a fixed postion. This does not seem like it fits the classic definition of BPPV due to the lasting symptoms and vertigo brought on by eye movements as I thought BPPV was related to head movements.
I'll try to reread all this tomorrow. BPPV is by definition a mechanical problem and is by definition positional. The problem you have with eye movement may be similar to one of the main problems I have, but which is not related to MS for me. I'm too tired to talk about it now, but will later.
Nah, your eye movements sound more like nystagmus, which is a tremor of the eye muscles. I get that when I'm fatigued or having a relapse.
I have to join in the 'Me Toos!' I also get a weird muffled sensation in my ears, sometimes with buzzing, and it's very disorienting. It's as if somebody (excuse the imagery!) shoved a vibrator all the way in my ear until it's touching my brain. I have to pause and wait for it to go away, because it does cause an increase in vertigo.
Personally, rendean, I think most of your problems with vertigo are due to MS. Vertigo's a very common symptom. BPPV wouldn't explain the constant vertigo.
This has been my most constant symptom with MS. I went undiagnosed for a number of years, but I would have vertigo that would hit and last for a couple of months at a time about once every couple of years. Doctors could never really find a cause. Drugs never seemed to help. It was miserable to say the least. With me it would start out slowly hitting a few times a day and gradually get worse and worse over the 2 month or so period and then gradually subside. Generally steroids were the only thing that helped stop the vertigo. I've had 3 VNG tests one was done when I was not having symptoms. The two that were done when I was having symptoms showed that the vertigo/ dizziness was caused by my central nervous system which is consistent with MS.
The VNG is a good test. Good luck with your results. I guess if vertigo is caused by the central nervous system there is little that can be done by way of treatment other than steroids. There are some good treatments for BBPV.
Thanks for the input. I do get relief if I receive IV steroids, at least I did the last two times.
Today at my routine follow-up at the cardiologist, we discussed my vertigo, specifically the episodes with the deafness and confusion. Since I have a long history of hypertension and palpitations he ordered a 30 day event monitor. With the confusional episodes, a history of frequent PACs and transient bradycardia and a return of palpitations last week he wants to rule out atrial fib. Since they never found a cause for the syncopal episode 4 years ago which resulted in a head injury, he would rather be safe than sorry.
So, now we have one more element to sort out in this dizzy/vertigo puzzle. Personally, I give up. I just want somebody to figure out the cause of this mess so, hopefully, it can be fixed.
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