Aa
"BPPV-plus" question for tomsant, or anyone
Hi Dr. Thomas Antony, thanks for posting on the forum.
I had a very strange BPPV episode in 2003 and am wondering if you ever heard of the following:
Whenever I would tip my head leftward or lie down on my left side, the ceiling would start jerking up and down. This would slow and stop after a few seconds. Typical BPPV, right?
BUT, get this: Concurrently with the ceiling-jerking, I would get a thumping or beating feeling/sound in my RIGHT ear, thus opposite to the BPPV side. This noise/thumping would start and stop exactly at the same time as the up-and-down nystagmus.
This would occur 100 percent consistently--every time I tipped my head left, the nystagmus and the right-ear beating would occur and fade out together over 15-20 seconds.
This lasted four days. I finally stopped being amused and cured myself with a home Epley maneuver.
As you might guess, I have long experience with dizziness, of unknown cause, starting in the 1980s though it remained mild until 1999, which was the first time I saw a doctor about it. (I am now 51.) In that year, I had a sudden, severe and permanent high-frequency hearing loss on the left when I sneezed hard (probably inner-ear stroke) and got significantly dizzier. It is a constant wooziness (like strong motion sickness in the head, though without nausea), although I did have a few isolated incidents of BPPV (both left and right sides) in the subsequent years.
Neither the otologist nor the neurologist said anything about this weird BPPV-plus! Someone speculated it was a stapedius muscle spasm, but why would BPPV cause that contralaterally?
A dizziness-specialist neurologist that I saw previously, before the "BPPV-plus" occurred, found out that I have VERY abnormal ABR bilaterally, even though my hearing is perfect on the right side. I also had a lot of paresthesias, bilateral trigeminal-nerve symptoms (initially painful but later mostly painless electric shocks running around eye/side of nose/upper lip, itchy spots, crawling spots, etc. on both sides and these days a LOT of twitching in my left cheek near my mouth), Lhermitte's and other symptoms but never got a diagnosis of ANYTHING AT ALL except "cranial neuropathy" of unknown cause because of the ABR.
What do you make of the "crossover" BPPV with the thumping in the contralateral ear? Do you think this must indicate a brainstem problem? I have done a lot of reading about dizziness over the years but never heard of ANYONE else having this with BPPV. I don't see neurologists anymore (not since 2003) and neither neurologists nor otologists seemed concerned with this symptom. I have not had any BPPV at all since that time, so it's not a problem... just a major curiosity for me, as no one would even speculate on the cause.
As for the cause of my dizziness, since they supposedly ruled MS out (after first telling me I had it), I believe that my dizziness may be migraine-related, since I am a migraneur (though I get only rare and very mild headaches--it's the visual aura that got me diagnosed as a migraineur at age 42, same year as the hearing loss and other weird symptoms started). The neurologist who specialized in dizziness (and told me "MS," then "hypochondriac"!) brushed off my attempts to question him about whether it could be migraine-related. I see that you have an interest in headaches; do YOU believe in migraine-associated dizziness, and do you think it can cause constant woozy/whooshy feelings in a person, without causing distinct whirling attacks? Benzodiazepines never helped at all.
Thanks again for your participation in the forum! Sorry to ask so many questions. My doctors eventually gave up trying to diagnose me or answer my questions, but the mysteries and the symptoms remain, at a manageable though annoying level.
Nancy T.
I had a very strange BPPV episode in 2003 and am wondering if you ever heard of the following:
Whenever I would tip my head leftward or lie down on my left side, the ceiling would start jerking up and down. This would slow and stop after a few seconds. Typical BPPV, right?
BUT, get this: Concurrently with the ceiling-jerking, I would get a thumping or beating feeling/sound in my RIGHT ear, thus opposite to the BPPV side. This noise/thumping would start and stop exactly at the same time as the up-and-down nystagmus.
This would occur 100 percent consistently--every time I tipped my head left, the nystagmus and the right-ear beating would occur and fade out together over 15-20 seconds.
This lasted four days. I finally stopped being amused and cured myself with a home Epley maneuver.
As you might guess, I have long experience with dizziness, of unknown cause, starting in the 1980s though it remained mild until 1999, which was the first time I saw a doctor about it. (I am now 51.) In that year, I had a sudden, severe and permanent high-frequency hearing loss on the left when I sneezed hard (probably inner-ear stroke) and got significantly dizzier. It is a constant wooziness (like strong motion sickness in the head, though without nausea), although I did have a few isolated incidents of BPPV (both left and right sides) in the subsequent years.
Neither the otologist nor the neurologist said anything about this weird BPPV-plus! Someone speculated it was a stapedius muscle spasm, but why would BPPV cause that contralaterally?
A dizziness-specialist neurologist that I saw previously, before the "BPPV-plus" occurred, found out that I have VERY abnormal ABR bilaterally, even though my hearing is perfect on the right side. I also had a lot of paresthesias, bilateral trigeminal-nerve symptoms (initially painful but later mostly painless electric shocks running around eye/side of nose/upper lip, itchy spots, crawling spots, etc. on both sides and these days a LOT of twitching in my left cheek near my mouth), Lhermitte's and other symptoms but never got a diagnosis of ANYTHING AT ALL except "cranial neuropathy" of unknown cause because of the ABR.
What do you make of the "crossover" BPPV with the thumping in the contralateral ear? Do you think this must indicate a brainstem problem? I have done a lot of reading about dizziness over the years but never heard of ANYONE else having this with BPPV. I don't see neurologists anymore (not since 2003) and neither neurologists nor otologists seemed concerned with this symptom. I have not had any BPPV at all since that time, so it's not a problem... just a major curiosity for me, as no one would even speculate on the cause.
As for the cause of my dizziness, since they supposedly ruled MS out (after first telling me I had it), I believe that my dizziness may be migraine-related, since I am a migraneur (though I get only rare and very mild headaches--it's the visual aura that got me diagnosed as a migraineur at age 42, same year as the hearing loss and other weird symptoms started). The neurologist who specialized in dizziness (and told me "MS," then "hypochondriac"!) brushed off my attempts to question him about whether it could be migraine-related. I see that you have an interest in headaches; do YOU believe in migraine-associated dizziness, and do you think it can cause constant woozy/whooshy feelings in a person, without causing distinct whirling attacks? Benzodiazepines never helped at all.
Thanks again for your participation in the forum! Sorry to ask so many questions. My doctors eventually gave up trying to diagnose me or answer my questions, but the mysteries and the symptoms remain, at a manageable though annoying level.
Nancy T.
Dear Dr. Antony,
Thanks! After I wrote that post, I thought I should have worded it differently so you would not think I DIDN'T want you to reply--I only meant that you have already spent a lot of time reading and answering my posts and I didn't want you to feel that I was expecting another response. I feel very encouraged by your advice and sympathetic comments, and I will try to be a better patient. In real life I am not so deranged as I sound when I start rattling off my whole silly story. I actually have a good, busy life and am mostly happy. Also, at the beginning of the year I got a new primary-care doctor when I switched insurance; I have only seen him twice, but he seems to listen far better than his predecessors (perhaps because I never told him about the whole "possible MS" thing, which seems to make doctors clam up and look at you cross-eyed) and he actually uses logic and examination of the patient before making up his mind about something. It seems simple, but his predecessors did not do that!! So, perhaps things will turn around for me. I know better than to get my hopes up too high, but maybe he will be a good doctor for me.
Yes, PLF was the very first thing I thought of when I began reading about sudden hearing loss after the diagnosis (oddly, the first ENT I saw thought that the sneezes "were not related" to my hearing loss--what!!! "So, Doctor M., it was just a coincidence that I sneezed and at the exact same moment lost my hearing??"-- and he did not mention PLF). And when I got to the neurotologist, PLF was the first thing HE thought of. And later the neurologist who specializes in dizziness said he totally agreed that PLF had been the most obvious theory before the surgery disproved it. The onset was totally consistent with PLF, although my continuing symptoms were not totally consistent (the hearing loss did not fluctuate, and the dizziness was not as severe as it usually seems to be with PLF). I accept the neurologist's theory of a vascular "insult," as it seems to fit best. The neurotologist later said it could have also been an intracochlear membrane break (not a round/oval window break). All completely theoretical, of course.
MANY sincere thanks for helping me out as well as the other people on this forum. I appreciate your time and answers greatly!
Best regards,
Nancy T.
Thanks! After I wrote that post, I thought I should have worded it differently so you would not think I DIDN'T want you to reply--I only meant that you have already spent a lot of time reading and answering my posts and I didn't want you to feel that I was expecting another response. I feel very encouraged by your advice and sympathetic comments, and I will try to be a better patient. In real life I am not so deranged as I sound when I start rattling off my whole silly story. I actually have a good, busy life and am mostly happy. Also, at the beginning of the year I got a new primary-care doctor when I switched insurance; I have only seen him twice, but he seems to listen far better than his predecessors (perhaps because I never told him about the whole "possible MS" thing, which seems to make doctors clam up and look at you cross-eyed) and he actually uses logic and examination of the patient before making up his mind about something. It seems simple, but his predecessors did not do that!! So, perhaps things will turn around for me. I know better than to get my hopes up too high, but maybe he will be a good doctor for me.
Yes, PLF was the very first thing I thought of when I began reading about sudden hearing loss after the diagnosis (oddly, the first ENT I saw thought that the sneezes "were not related" to my hearing loss--what!!! "So, Doctor M., it was just a coincidence that I sneezed and at the exact same moment lost my hearing??"-- and he did not mention PLF). And when I got to the neurotologist, PLF was the first thing HE thought of. And later the neurologist who specializes in dizziness said he totally agreed that PLF had been the most obvious theory before the surgery disproved it. The onset was totally consistent with PLF, although my continuing symptoms were not totally consistent (the hearing loss did not fluctuate, and the dizziness was not as severe as it usually seems to be with PLF). I accept the neurologist's theory of a vascular "insult," as it seems to fit best. The neurotologist later said it could have also been an intracochlear membrane break (not a round/oval window break). All completely theoretical, of course.
MANY sincere thanks for helping me out as well as the other people on this forum. I appreciate your time and answers greatly!
Best regards,
Nancy T.
Hi Nancy,
I understand I need not reply again :-)
You have tried to apologize for posting long messages, that was not necessary.
PLF: Since your 'vertigo' in that ear started after a sneeze, and you were found to have an SN loss of hearing in that ear, I presumed it was PLF.
I sincerely wish you take things lightly, and that you find very congenial doctors.
Best,
TA
I understand I need not reply again :-)
You have tried to apologize for posting long messages, that was not necessary.
PLF: Since your 'vertigo' in that ear started after a sneeze, and you were found to have an SN loss of hearing in that ear, I presumed it was PLF.
I sincerely wish you take things lightly, and that you find very congenial doctors.
Best,
TA
Dear Dr. Antony--thanks so much for your reply; you're very kind, truly!
"To follow the neurologist's advice..." I understand what you are saying--that my symptoms are in the realm of neurology--however, one neurologist's final advice was, "Nancy, you just gotta let it go!" (i.e., give up the idea that anything is wrong with me), and the other neurologist's advice was to not call her again unless something really disastrous happened.
It is really hard to convey the extent of the bewilderment, dismay, and psychological paralysis that I suffered as a result of my interactions with neurologists (even worse with primary-care doctors with whom I tried to discuss it). I went through years of feeling like there was a giant rock in my stomach, like there was a blackness repeatedly enveloping and paralyzing me. I had never known depression in my life, but I knew it then. (Not anymore.)
I felt as if they were expecting me to read between the lines of the unexplainedly and totally contradictory things they were saying during those four years. What was their implicit message? Was it "You have MS but we can't prove/diagnose it and you should pretend like you don't have it, therefore we will not discuss it with you, for your own good"? Or was the message "Your only real problem (besides hearing loss and dizziness) is anxiety, there is nothing otherwise wrong with you, and we are just humoring you by ordering MRIs and talking about a spinal tap"? (Spinal tap was actually never done.) In the end, what they said and did showed me that it was the second message.
If I had had a primary-care doctor who believed in me, would talk to me in a straightforward and completely open way, and most of all FOLLOW me, I would have been OK, but whatever the neurologists wrote, the PCPs accepted and also refused to seriously discuss my diagnostic situation other than to make remarks showing that they, too, thought I was just anxious. Thus, I felt completely cut off. It was "the hell of communication denied," as the famous neurologist Oliver Sacks wrote in his book "A Leg to Stand On"--please read chapter 3, "Limbo," and you will understand exactly what I felt, except I felt it for many years, instead of a few days or weeks, as he did.
The inability to communicate with a doctor--because they themselves cut off any meaningful communication by (eventually) seeming to interpret everything I said or asked as a manifestation of anxiety--is not something tangential to the resolution of the patient's problem: it is central. My biggest problem, in the end, was not the symptoms. It was how to reach a plausible, logical, and thus peaceful understanding of my diagnostic situation, even if an actual diagnosis was not possible (which I fully understood and accepted). But I could not be settled in my mind when the doctors created these irresolvable, unexplained contradictions and made me feel that perhaps they really did not quite believe what I was telling them. (The first neurologist kept referring to my "amazing, almost unbelievable story!" At first I thought he was just making a kind of humorous remark, but in the end I realized he really didn't know whether to "believe" me.)
Actually, after 9 years, I am NOT much concerned about my "illness," if one can call it that. I do not consider myself "ill," only that I have a collection of strange symptoms in addition to constant but manageable achiness, dizziness, and leg fatigue, to which I am completely accustomed and which I simply live with as "normal" for me. I know that whatever is causing these symptoms appears to be benign and is not likely to ever disable me or cause me really serious problems.
Again I thank you for your advice. I understand what you are saying--that a neurologist is the type of doctor I should see--but frankly, the thought of seeing a neurologist is what causes me extreme anxiety, not my symptoms. Once, several years after my last neurologist visit, I saw her picture on a clinic Web site. Just seeing her face made me relive the psychological anguish of those years (even though she was a very nice person) such that I cried for two days. If there is such a thing as "post-neurologist stress disorder," I have it!
But I've never felt that way at all about ENTs. Perhaps because of the hearing loss and dizziness problems, they were always quite willing to "stick with me," and NEVER made me feel like a hypochondriac.
I do not in any way wish to imply that the doctors I saw were bad, or uncaring. They certainly were not. I believe they would have liked to understand my symptoms, diagnose me, and help me. But I think they simply did not feel they ultimately had the time, patience, interest, and/or ability to do so, or to follow me long-term. And so, they solve their problem (what to do with the patient) by implicitly or explicitly naming "anxiety" as the problem, a problem that resides inherently in the patient. This makes the patient doubt herself constantly and drives her away from the doctor's office.
I realize that my thinking and feelings about all this have become irrational from the standpoint of the day-to-day experience of doctors, and I know that I am an oversensitive person who takes it excessively hard when anyone expresses doubt about my honest reports, explanations, or intentions. However, to me it is completely rational to not risk my regained mental health by talking to a doctor again about these things. Have you heard the definition of insanity?--doing the same thing over and over and expecting a different result! :) It is much too late for yoga. But, as I said, I am reconciled to the situation (no more depression and gnashing of teeth!) and have just gone on with my life.
Thank you again most kindly for your thoughtful responses; you are very generous to share your time with us here! I apologize for going so far from my original question, but I did not know how to answer all your questions without presenting my whole history, and my difficulty in understanding the doctors was an integral part of it. There is no need for you to reply again, as you have already expressed your honest thoughts. Perhaps someday I will be able to follow your advice and consult a neurologist again.
(Just one correction to your recap of my history above--I most likely did NOT have a PLF even though it was first suspected. Both ear specialists decided, in the end, that I did not have a PLF, and I agree with them.)
Best wishes,
Nancy T.
"To follow the neurologist's advice..." I understand what you are saying--that my symptoms are in the realm of neurology--however, one neurologist's final advice was, "Nancy, you just gotta let it go!" (i.e., give up the idea that anything is wrong with me), and the other neurologist's advice was to not call her again unless something really disastrous happened.
It is really hard to convey the extent of the bewilderment, dismay, and psychological paralysis that I suffered as a result of my interactions with neurologists (even worse with primary-care doctors with whom I tried to discuss it). I went through years of feeling like there was a giant rock in my stomach, like there was a blackness repeatedly enveloping and paralyzing me. I had never known depression in my life, but I knew it then. (Not anymore.)
I felt as if they were expecting me to read between the lines of the unexplainedly and totally contradictory things they were saying during those four years. What was their implicit message? Was it "You have MS but we can't prove/diagnose it and you should pretend like you don't have it, therefore we will not discuss it with you, for your own good"? Or was the message "Your only real problem (besides hearing loss and dizziness) is anxiety, there is nothing otherwise wrong with you, and we are just humoring you by ordering MRIs and talking about a spinal tap"? (Spinal tap was actually never done.) In the end, what they said and did showed me that it was the second message.
If I had had a primary-care doctor who believed in me, would talk to me in a straightforward and completely open way, and most of all FOLLOW me, I would have been OK, but whatever the neurologists wrote, the PCPs accepted and also refused to seriously discuss my diagnostic situation other than to make remarks showing that they, too, thought I was just anxious. Thus, I felt completely cut off. It was "the hell of communication denied," as the famous neurologist Oliver Sacks wrote in his book "A Leg to Stand On"--please read chapter 3, "Limbo," and you will understand exactly what I felt, except I felt it for many years, instead of a few days or weeks, as he did.
The inability to communicate with a doctor--because they themselves cut off any meaningful communication by (eventually) seeming to interpret everything I said or asked as a manifestation of anxiety--is not something tangential to the resolution of the patient's problem: it is central. My biggest problem, in the end, was not the symptoms. It was how to reach a plausible, logical, and thus peaceful understanding of my diagnostic situation, even if an actual diagnosis was not possible (which I fully understood and accepted). But I could not be settled in my mind when the doctors created these irresolvable, unexplained contradictions and made me feel that perhaps they really did not quite believe what I was telling them. (The first neurologist kept referring to my "amazing, almost unbelievable story!" At first I thought he was just making a kind of humorous remark, but in the end I realized he really didn't know whether to "believe" me.)
Actually, after 9 years, I am NOT much concerned about my "illness," if one can call it that. I do not consider myself "ill," only that I have a collection of strange symptoms in addition to constant but manageable achiness, dizziness, and leg fatigue, to which I am completely accustomed and which I simply live with as "normal" for me. I know that whatever is causing these symptoms appears to be benign and is not likely to ever disable me or cause me really serious problems.
Again I thank you for your advice. I understand what you are saying--that a neurologist is the type of doctor I should see--but frankly, the thought of seeing a neurologist is what causes me extreme anxiety, not my symptoms. Once, several years after my last neurologist visit, I saw her picture on a clinic Web site. Just seeing her face made me relive the psychological anguish of those years (even though she was a very nice person) such that I cried for two days. If there is such a thing as "post-neurologist stress disorder," I have it!
But I've never felt that way at all about ENTs. Perhaps because of the hearing loss and dizziness problems, they were always quite willing to "stick with me," and NEVER made me feel like a hypochondriac.
I do not in any way wish to imply that the doctors I saw were bad, or uncaring. They certainly were not. I believe they would have liked to understand my symptoms, diagnose me, and help me. But I think they simply did not feel they ultimately had the time, patience, interest, and/or ability to do so, or to follow me long-term. And so, they solve their problem (what to do with the patient) by implicitly or explicitly naming "anxiety" as the problem, a problem that resides inherently in the patient. This makes the patient doubt herself constantly and drives her away from the doctor's office.
I realize that my thinking and feelings about all this have become irrational from the standpoint of the day-to-day experience of doctors, and I know that I am an oversensitive person who takes it excessively hard when anyone expresses doubt about my honest reports, explanations, or intentions. However, to me it is completely rational to not risk my regained mental health by talking to a doctor again about these things. Have you heard the definition of insanity?--doing the same thing over and over and expecting a different result! :) It is much too late for yoga. But, as I said, I am reconciled to the situation (no more depression and gnashing of teeth!) and have just gone on with my life.
Thank you again most kindly for your thoughtful responses; you are very generous to share your time with us here! I apologize for going so far from my original question, but I did not know how to answer all your questions without presenting my whole history, and my difficulty in understanding the doctors was an integral part of it. There is no need for you to reply again, as you have already expressed your honest thoughts. Perhaps someday I will be able to follow your advice and consult a neurologist again.
(Just one correction to your recap of my history above--I most likely did NOT have a PLF even though it was first suspected. Both ear specialists decided, in the end, that I did not have a PLF, and I agree with them.)
Best wishes,
Nancy T.
Hi,
(Caution: This letter of mine too has gone longer than I expected)
"Does this short reply help" was a tongue in the cheek question :-)
It was because, I thought you already knew the answers, and what you wanted was confirmation. May I quote from your latest post..".they.felt it would not make any difference to the diagnosis or treatment from their perspective.."
‘Carsickness’ Migraines, aura etc in childhood; giddiness, unsteady walk in 1983, episodes of dizziness in late 80s, also the episodes of dizziness, transient periodic numbness of right hip; and the constant dizzy feel that developed in 1987 which you describe as motion sickness inside the head; the episodes of sharp shooting pains you had in the scalp or side of face in 1990s; the ‘electric shock’ sensations below either ear in 1999, the unsteady walk and lack of co-ordination (?) you had later in the year, ‘visual migraines’ and later the ‘sensitivity’ to high pitched sounds in the right ear, tingling and itching spots in various parts of my body (face, hands, feet, legs), and the painless shocks running near the eye and side of the nose and upper lip and the neurologist found "past pointing to the left". Then you had BPPV and Lhermitte's in 2000, next couple of years you continued to have ‘many spots of paresthesia in face, hands, legs, and feet--tingling, crawling, "cold" spots, extreme itchy spots, "bee stings," electric shocks, etc’ the ‘past-pointing’ you noticed in 2000-01, the dizziness and “"fat" in the mouth (hard to articulate words for a few minutes)” [– this is called dysarthria], Positional vertigo with ear thumping in 2003, the ABR in 2004 showing delays, ---------------
all this would have given any neurologist enough data.
Then, why didn’t they share their thoughts with you?
You say you are a "detail-oriented" (I'm a copyeditor, OK? and not a dumb person,")..
"the doctors mistaking my attempts to clarify and understand my diagnostic situation for mere anxiety" (Mere anxiety???)
"I think they had in their heads an idea of what is and isn't wrong with me--I just wish they would have shared it more clearly."
"No one ever said that it definitely is or isn't an ear problem, is or isn't a brain problem"
(but they gave you "the pat on the back"....
Sure, you have some as yet un-understood symptom complexes.
About the "bizarro BPPV,": It is an academic question to be discussed in academic forum, with full data. Your left ear had a perilymph fistula and consequent SNHL, and probably could cause some vertigo. You have a previous history of positional vertigo, possible ‘cured’ with an Epley’s or with vestibular exercises.
"How could the abnormal right-side ABR reflect a cochlear problem when my hearing is perfectly normal on that side? ": This is exactly why every test has to be correlated clinically. ABR is a test which is barely 40 yr old. As the technology evolves, we may get the answer. But as of now, we have to take it as a 'cranial neuropathy' (something wrong with that cranial nerve)
"I understand why the doctors consider me a “difficult” patient, because I have had so many symptoms—and to complicate it , I have also had muscle achiness" (You didn't understand why; it may be because they thought your ailment is a difficult one)
“I now realize that “overwhelmed” is doctor-code for “this patient is probably a hypochondriac,” (No such doctor-code exists as far as I know) "the contradiction between knowing that something is wrong but not being “allowed” to talk to doctors about it anymore" (I think your thoughts moved tangentially)
"I truly believe that my symptoms are never going to be explained or diagnosed; it's been too long and no one was ever able to give me ANY answers--why should they now? " It is not so. They are caring and concerned, and gave you a pat on the back.
Though you may be concerned about your illness, I would advise you not to take it to heart, but just to follow the neurologist’s advice.
Best rgds,
Thomas Antony
(Caution: This letter of mine too has gone longer than I expected)
"Does this short reply help" was a tongue in the cheek question :-)
It was because, I thought you already knew the answers, and what you wanted was confirmation. May I quote from your latest post..".they.felt it would not make any difference to the diagnosis or treatment from their perspective.."
‘Carsickness’ Migraines, aura etc in childhood; giddiness, unsteady walk in 1983, episodes of dizziness in late 80s, also the episodes of dizziness, transient periodic numbness of right hip; and the constant dizzy feel that developed in 1987 which you describe as motion sickness inside the head; the episodes of sharp shooting pains you had in the scalp or side of face in 1990s; the ‘electric shock’ sensations below either ear in 1999, the unsteady walk and lack of co-ordination (?) you had later in the year, ‘visual migraines’ and later the ‘sensitivity’ to high pitched sounds in the right ear, tingling and itching spots in various parts of my body (face, hands, feet, legs), and the painless shocks running near the eye and side of the nose and upper lip and the neurologist found "past pointing to the left". Then you had BPPV and Lhermitte's in 2000, next couple of years you continued to have ‘many spots of paresthesia in face, hands, legs, and feet--tingling, crawling, "cold" spots, extreme itchy spots, "bee stings," electric shocks, etc’ the ‘past-pointing’ you noticed in 2000-01, the dizziness and “"fat" in the mouth (hard to articulate words for a few minutes)” [– this is called dysarthria], Positional vertigo with ear thumping in 2003, the ABR in 2004 showing delays, ---------------
all this would have given any neurologist enough data.
Then, why didn’t they share their thoughts with you?
You say you are a "detail-oriented" (I'm a copyeditor, OK? and not a dumb person,")..
"the doctors mistaking my attempts to clarify and understand my diagnostic situation for mere anxiety" (Mere anxiety???)
"I think they had in their heads an idea of what is and isn't wrong with me--I just wish they would have shared it more clearly."
"No one ever said that it definitely is or isn't an ear problem, is or isn't a brain problem"
(but they gave you "the pat on the back"....
Sure, you have some as yet un-understood symptom complexes.
About the "bizarro BPPV,": It is an academic question to be discussed in academic forum, with full data. Your left ear had a perilymph fistula and consequent SNHL, and probably could cause some vertigo. You have a previous history of positional vertigo, possible ‘cured’ with an Epley’s or with vestibular exercises.
"How could the abnormal right-side ABR reflect a cochlear problem when my hearing is perfectly normal on that side? ": This is exactly why every test has to be correlated clinically. ABR is a test which is barely 40 yr old. As the technology evolves, we may get the answer. But as of now, we have to take it as a 'cranial neuropathy' (something wrong with that cranial nerve)
"I understand why the doctors consider me a “difficult” patient, because I have had so many symptoms—and to complicate it , I have also had muscle achiness" (You didn't understand why; it may be because they thought your ailment is a difficult one)
“I now realize that “overwhelmed” is doctor-code for “this patient is probably a hypochondriac,” (No such doctor-code exists as far as I know) "the contradiction between knowing that something is wrong but not being “allowed” to talk to doctors about it anymore" (I think your thoughts moved tangentially)
"I truly believe that my symptoms are never going to be explained or diagnosed; it's been too long and no one was ever able to give me ANY answers--why should they now? " It is not so. They are caring and concerned, and gave you a pat on the back.
Though you may be concerned about your illness, I would advise you not to take it to heart, but just to follow the neurologist’s advice.
Best rgds,
Thomas Antony
P.S. I suppose no explanation either for the spasmodic, fast-repeating "tapping" pain (feels like getting hit on the funnybone) on the prominent bone behind my bad ear concurrent with a clicking/tapping sound in that ear? These episodes come and go. Not related to the Baha site because they began 8 or 9 years ago. Just one more weird thing.
Yep, I did have negative MRI for acoustic neuroma or any other tumor, etc.... by "lesion" the neurologist must have meant something else (he already had the MRI report when he ordered the ABR--I think he was looking for MS evidence). Not all lesions can be seen on MRI.
I have not had an OAE. I think the ear specialists I saw (neuro and ENT) were very good and knowledgeable doctors, but minimalists at testing. That is OK with me, because I figure that if they didn't order a particular test, it was because they felt it would not make any difference to the diagnosis or treatment from their perspective. I think they had in their heads an idea of what is and isn't wrong with me--I just wish they would have shared it more clearly. No one ever said that it definitely is or isn't an ear problem, is or isn't a brain problem. Unfortunately, because I'm a 40-something (oops, now 50-something) woman who does not go around demanding things and is "detail-oriented" (I'm a copyeditor, OK? and not a dumb person, I graduated from college summa *** laude, though not a science major)--well, you know what that means... the pat on the back, the doctors mistaking my attempts to clarify and understand my diagnostic situation for mere anxiety. Baloney! But my engagement with neuro-otologists and oto-neurologists is ancient history. The only ear doctor I see now is my Baha surgeon, and we don't talk about anything except Baha.
How could the abnormal right-side ABR reflect a cochlear problem when my hearing is perfectly normal on that side?
As for the reflex decay, the audiologist tested it at 500 Hz in the left (hearing-loss) ear. Up to that frequency, my hearing is normal. Her notes read "Highly abnormal decay pattern left consistent w/ N. VIII disease. Normal decay pattern R at 500 Hz, slightly elevated R at 1000 Hz. Due to elevated threshold, decay could not be measured/obtained for L at 1000 Hz."
The chart (from Cartwright and Lilly 1977) shows, for 500 Hz, the left ear exactly following the line for "N VIII disease" and the right ear following the line for "Normals." The chart for 1000 Hz shows nothing for the left ear (which at that frequency is already down 75 or 80 dB) and for the right ear it goes halfway between "Normals" and "Meniere's disease." For 2000 and 4000 Hz the right ear was normal.
She also did some "500 Hz tone burst" testing, to which she also drew the neurologist's attention--apparently something abnormal there.
I am sorry to sound so negative. I am resigned to living with the uncertainty (after nine years); I truly believe that my symptoms are never going to be explained or diagnosed; it's been too long and no one was ever able to give me ANY answers--why should they now?
But please believe me that I really do appreciate your information and suggestions. (I guess you don't have any take on the bizarro BPPV, either?--it's in the past, but it remains an unexplained curiosity.)
Right now I am just thoroughly enjoying having the Baha and seeing what fun things it does. It's put a stop to the nine years of constant head-turning and dancing around people; it gives me ears in the back of my head!! (because of the processor location); it lets me turn it way up (an Intenso) for super-duper hearing; and it gives me "echoes" of beeps from the microwave and seat-belt warning, which is very weird. I have always been able to partially compensate for the SSD, but not having to STRUGGLE with it daily is such a joy!! Only thing is, I have to wear the Intenso turned 90 degrees; otherwise I get feedback when it touches my scalp when I turn my head left. I don't care, it's fantastic!!
Thanks again; and how's the weather, and business, in your part of the world? Has the economic crisis affected you much there?
Nancy T.
I have not had an OAE. I think the ear specialists I saw (neuro and ENT) were very good and knowledgeable doctors, but minimalists at testing. That is OK with me, because I figure that if they didn't order a particular test, it was because they felt it would not make any difference to the diagnosis or treatment from their perspective. I think they had in their heads an idea of what is and isn't wrong with me--I just wish they would have shared it more clearly. No one ever said that it definitely is or isn't an ear problem, is or isn't a brain problem. Unfortunately, because I'm a 40-something (oops, now 50-something) woman who does not go around demanding things and is "detail-oriented" (I'm a copyeditor, OK? and not a dumb person, I graduated from college summa *** laude, though not a science major)--well, you know what that means... the pat on the back, the doctors mistaking my attempts to clarify and understand my diagnostic situation for mere anxiety. Baloney! But my engagement with neuro-otologists and oto-neurologists is ancient history. The only ear doctor I see now is my Baha surgeon, and we don't talk about anything except Baha.
How could the abnormal right-side ABR reflect a cochlear problem when my hearing is perfectly normal on that side?
As for the reflex decay, the audiologist tested it at 500 Hz in the left (hearing-loss) ear. Up to that frequency, my hearing is normal. Her notes read "Highly abnormal decay pattern left consistent w/ N. VIII disease. Normal decay pattern R at 500 Hz, slightly elevated R at 1000 Hz. Due to elevated threshold, decay could not be measured/obtained for L at 1000 Hz."
The chart (from Cartwright and Lilly 1977) shows, for 500 Hz, the left ear exactly following the line for "N VIII disease" and the right ear following the line for "Normals." The chart for 1000 Hz shows nothing for the left ear (which at that frequency is already down 75 or 80 dB) and for the right ear it goes halfway between "Normals" and "Meniere's disease." For 2000 and 4000 Hz the right ear was normal.
She also did some "500 Hz tone burst" testing, to which she also drew the neurologist's attention--apparently something abnormal there.
I am sorry to sound so negative. I am resigned to living with the uncertainty (after nine years); I truly believe that my symptoms are never going to be explained or diagnosed; it's been too long and no one was ever able to give me ANY answers--why should they now?
But please believe me that I really do appreciate your information and suggestions. (I guess you don't have any take on the bizarro BPPV, either?--it's in the past, but it remains an unexplained curiosity.)
Right now I am just thoroughly enjoying having the Baha and seeing what fun things it does. It's put a stop to the nine years of constant head-turning and dancing around people; it gives me ears in the back of my head!! (because of the processor location); it lets me turn it way up (an Intenso) for super-duper hearing; and it gives me "echoes" of beeps from the microwave and seat-belt warning, which is very weird. I have always been able to partially compensate for the SSD, but not having to STRUGGLE with it daily is such a joy!! Only thing is, I have to wear the Intenso turned 90 degrees; otherwise I get feedback when it touches my scalp when I turn my head left. I don't care, it's fantastic!!
Thanks again; and how's the weather, and business, in your part of the world? Has the economic crisis affected you much there?
Nancy T.
Yes... "amusing" might be one word to describe my fatuous dissertations!
And yes, your reply does help, thank you... It sounds like you are a very good doctor, to judge from how you answer people's questions here and ask so many of your own.
Nonetheless, I do not plan to see a neurologist again as long as I can walk and talk and see. I did not "stop visiting them" of my own accord; it was they who stopped asking me to return and who eventually dismissed my symptoms. I could not imagine how to approach a neurologist again. I have done without them for more than five years and will be fine.
I guess you don't have any particular thoughts about the BPPV-with-thumping... but I thank you most sincerely for reading my long post and for your kind suggestions!
Very best wishes,
Nancy T.
And yes, your reply does help, thank you... It sounds like you are a very good doctor, to judge from how you answer people's questions here and ask so many of your own.
Nonetheless, I do not plan to see a neurologist again as long as I can walk and talk and see. I did not "stop visiting them" of my own accord; it was they who stopped asking me to return and who eventually dismissed my symptoms. I could not imagine how to approach a neurologist again. I have done without them for more than five years and will be fine.
I guess you don't have any particular thoughts about the BPPV-with-thumping... but I thank you most sincerely for reading my long post and for your kind suggestions!
Very best wishes,
Nancy T.
Reading ABR studies can be much like reading tea leaves, to even start to "guestimate" the exact location of a lesion is in my opinion "nutty." That is why we have MRI machines. If you have not already, you may want to get an OAE done. If it is normal than you know for sure that there is something neurological going on. If it is abnormal, well it could be both a cochlear based problem coupled with a neurological. Sometimes a tumor can press down on the blood supply to the cochlea, thus causeing poor blodd supply, thus causeing a hearing loss and other symptoms as well.
But I believe you already had an MRI and it was negative, so that brings us back to a cochlear based problem which would then atribute to the abnormal ABR results.
If I see strange ABR results I just refer to the MD for an MRI, I don't throw dice and try to guess where a tumor is. I guess I could say it is contained within the cranium with a fair amount of accuracy, but that is about it.
Reflex decay.... First you would have to have a reflex to begin with and if you audiogram is like what you say it is on the left side, I would not expect a reflex to be present to begin with. I would not state you had an "abnormal decay," I would sate you had "No Response." Why is that, that is because you could not hear the stimulus in the first place, and if you could you could not hear it a levels loud enough to trigger a reflex response.
This dizzy cas is difficult, which is not unique to dizzy patients.
Hi Nancy,
I have read the post. I think you should not stop visiting your neuro, as it is their field. You will require their help. They will be aware of whatever new is happening in the field.
At the same time, don’t loose your heart. Try Yoga to keep composure.
Does this short reply of mine help? : - )
Best,
TA
I have read the post. I think you should not stop visiting your neuro, as it is their field. You will require their help. They will be aware of whatever new is happening in the field.
At the same time, don’t loose your heart. Try Yoga to keep composure.
Does this short reply of mine help? : - )
Best,
TA
Hi Nancy,
I am amused at the length of your posting. I am sure you know I will require some time to go through. Shall reply ASAP.
Best,
TA
I am amused at the length of your posting. I am sure you know I will require some time to go through. Shall reply ASAP.
Best,
TA
(continued--last one!)
As for tests, all four brain MRIs (1999-2003) have shown small nonspecific spots (which do not “impress” the neurologists). First cervical MRI (in 2002, after I’d had Lhermitte’s for two years) was normal. Second cervical MRI, in 2006 (by orthopedic spine specialist, whom I saw just to check out the scoliosis for the first time in 35 years) showed bone spurs, but he said these were not the cause of my symptoms. Blood tests have all been normal: ESR, thyroid, B12, AIED antibodies, myasthenia gravis, and ANA. I am not diabetic and was not hypertensive until I started seeing neurologists! Since then I do have high blood pressure in the doctor’s office, but usually not at home and not even at the Red Cross when I go to donate blood. I think that if I do not have high blood pressure just before getting stuck with needles and losing a pint of blood, then I don’t really have high blood pressure! But on my doctor’s advice, I do now take lisinopril (since 2005) and simvastatin (since 2007) because my cholesterol, previously borderline normal, skyrocketed two years ago for no apparent reason, maybe my age (now 51). I am menopausal since 2004. No other medical conditions except what I mentioned. My biggest problems now are the DAILY achiness and dizziness (though the “fog”/concentration problem is solved by Strattera and the achiness is controlled by over-the-counter pills) and now also the slowness and quick fatigue in my legs when I walk continuously more than two or three blocks. I am losing weight slowly and am sure that will help, but I don’t think that is the fundamental cause of my walking slowdown, because I have been about 50 lbs. overweight most of the time since my twenties.
I know I wrote far too much, but I tried to answer your questions thoroughly. The neurologists do not like such “thorough” answers… the MD/PhD fellow was very sharp, but nearly the first words out of his mouth when he came in after reading my written history were “You have to be careful about throwing so much at doctors, they can get overwhelmed!” I now realize that “overwhelmed” is doctor-code for “this patient is probably a hypochondriac,” but I cannot help it, these are true symptoms and I am not exaggerating anything. I think that doctor really didn’t know whether to believe me or not, because he kept referring to my “amazing” and “almost unbelievable” story, shaking his head and smiling. But he did investigate things properly, even though he never went as far as doing a spinal tap for MS. (The other neurologist attempted a spinal tap but could not get any fluid out due to my scoliosis, and she later said I did not need a spinal tap after all. Very confusing.)
I certainly don’t expect that you have answers for me, but I am just curious what you think about the “crossover” BPPV (my elderly neuro-otologist was not interested in this when I returned to him in 2006), and also what can cause a bilaterally abnormal ABR besides MS? (I know that severe hearing loss on the left makes ABR interpretation difficult, but the audiologist—in a vestibular lab under the direction of the neurologist-professor—did some “tone burst” testing at 500 Hz where I still have left-side hearing and found a retrocochlear abnormality on that side too.) I never had any serious viral illness, just colds. I have never been hospitalized in my life, except for childbirth, never had an auto accident, never any serious illness—nothing.
Thank you if you have succeeded in reading this far, and I apologize very much for the length!
Best wishes,
Nancy T.
As for tests, all four brain MRIs (1999-2003) have shown small nonspecific spots (which do not “impress” the neurologists). First cervical MRI (in 2002, after I’d had Lhermitte’s for two years) was normal. Second cervical MRI, in 2006 (by orthopedic spine specialist, whom I saw just to check out the scoliosis for the first time in 35 years) showed bone spurs, but he said these were not the cause of my symptoms. Blood tests have all been normal: ESR, thyroid, B12, AIED antibodies, myasthenia gravis, and ANA. I am not diabetic and was not hypertensive until I started seeing neurologists! Since then I do have high blood pressure in the doctor’s office, but usually not at home and not even at the Red Cross when I go to donate blood. I think that if I do not have high blood pressure just before getting stuck with needles and losing a pint of blood, then I don’t really have high blood pressure! But on my doctor’s advice, I do now take lisinopril (since 2005) and simvastatin (since 2007) because my cholesterol, previously borderline normal, skyrocketed two years ago for no apparent reason, maybe my age (now 51). I am menopausal since 2004. No other medical conditions except what I mentioned. My biggest problems now are the DAILY achiness and dizziness (though the “fog”/concentration problem is solved by Strattera and the achiness is controlled by over-the-counter pills) and now also the slowness and quick fatigue in my legs when I walk continuously more than two or three blocks. I am losing weight slowly and am sure that will help, but I don’t think that is the fundamental cause of my walking slowdown, because I have been about 50 lbs. overweight most of the time since my twenties.
I know I wrote far too much, but I tried to answer your questions thoroughly. The neurologists do not like such “thorough” answers… the MD/PhD fellow was very sharp, but nearly the first words out of his mouth when he came in after reading my written history were “You have to be careful about throwing so much at doctors, they can get overwhelmed!” I now realize that “overwhelmed” is doctor-code for “this patient is probably a hypochondriac,” but I cannot help it, these are true symptoms and I am not exaggerating anything. I think that doctor really didn’t know whether to believe me or not, because he kept referring to my “amazing” and “almost unbelievable” story, shaking his head and smiling. But he did investigate things properly, even though he never went as far as doing a spinal tap for MS. (The other neurologist attempted a spinal tap but could not get any fluid out due to my scoliosis, and she later said I did not need a spinal tap after all. Very confusing.)
I certainly don’t expect that you have answers for me, but I am just curious what you think about the “crossover” BPPV (my elderly neuro-otologist was not interested in this when I returned to him in 2006), and also what can cause a bilaterally abnormal ABR besides MS? (I know that severe hearing loss on the left makes ABR interpretation difficult, but the audiologist—in a vestibular lab under the direction of the neurologist-professor—did some “tone burst” testing at 500 Hz where I still have left-side hearing and found a retrocochlear abnormality on that side too.) I never had any serious viral illness, just colds. I have never been hospitalized in my life, except for childbirth, never had an auto accident, never any serious illness—nothing.
Thank you if you have succeeded in reading this far, and I apologize very much for the length!
Best wishes,
Nancy T.
(continued)
He was quite interested in the vascular-loop theory of dizziness, but when the MRA showed a small vascular loop on my RIGHT (normal-hearing) side, he decided it probably was not the cause of my dizziness. He thought my hearing loss was likely due to a “stroke” in the inner ear that hit the vessel supplying the high frequencies and part of the vestibular apparatus. This made excellent sense to me, because the loss has never fluctuated.
In 2002-03 I saw another neurologist for a second opinion. She did two more MRIs, and the radiologist wrote that the pattern of “small scattered lesions” had changed, which was consistent with MS but not specific for it. But the neurologist said the lesions could be due to migraine, blood pressure, cholesterol, etc. She, like the previous neurologist, gave me the impression that I only needed to come back if something really bad happened (which it never has) and that I did not have MS. She labeled me as having “benign paresthesias,” even though paresthesias were not my only symptoms!!
In 2006, after one of the “worse periods” of dizziness—when I would have days or weeks of feeling dizzier, even though I never have any real qualitative change in the dizziness (since 1999) or distinct attacks (since the late 1980s)—I went back to the neuro-otologist, who did another ENG (normal), had me try Ativan (which made me dizzier!), and then had me take allergy shots for two years, saying that allergies (which I never knew I had) can exacerbate inner-ear dizziness. At first I thought the shots helped, but it’s hard to tell for sure because the level of dizziness fluctuates frequently. Certainly there is NO seasonal component to my dizziness.
I understand why the doctors consider me a “difficult” patient, because I have had so many symptoms—and to complicate it, I have also had muscle achiness since the early 1990s (possibly a bit of atypical fibromyalgia) and now also joint problems (mainly my knees and big toes, probably due to years of being overweight). I take ibuprofen and acetaminophen constantly to keep the achiness under control. I am very physically active at least 3 days a week working in an insanely busy public library and I have tried to keep up with neighborhood walking on other days, but even normal activity soon makes me achy and fatigued. My arm and leg stamina is bad; my actual strength is normal, but after walking briskly for only two blocks, I must slow to an extremely slow pace. This is abnormal because 8 years ago when I started walking—at the same weight—I soon was able to walk VERY fast and long without getting any muscle fatigue, even my husband couldn’t keep up with me! I must now take two walking sticks on my neighborhood walks in order to walk at a normal pace. Doctors are not concerned about this because my gait and strength appear normal. They are not worried about what they can’t see. I have not seen a neurologist since 2003 because nothing dramatic has happened and I am deathly afraid of getting the “hypochondriac” label again, which poisons my relationship with regular doctors and makes me psychologically ill. I had NO history of depression or any other mental disorder until the neurologist put the hypochondriac label on me, after initially scaring me with “MS.” This contradiction, and the contradiction between knowing that something is wrong but not being “allowed” to talk to doctors about it anymore did cause me to be depressed for some time, but I got over it. But I cannot bring myself to enter that neurologist quicksand again, because my mental health is more important than my physical health!
With respect to the 2003 BPPV that I asked about, no, I did not fall or hit my head. One day I simply tipped my head leftward/backward and I felt dizzy and saw the ceiling jumping up and down (vertically) pretty fast. The beating/thumping in my right ear was exactly “co-terminous” with the ceiling-jumping. They would both start, increase, decrease, and stop at the same time as the other. This would occur every time I tipped my head leftward during the next four days (no unusual dizziness between the episodes). I did not see a doctor at that time, because I knew this was just BPPV, and I was not seeing my ENT in those years. Finally I reviewed the Epley manuever online (the vestibular therapist had done a couple of canalith-repositioning maneuvers with me “just in case” when I saw her in 2000, so I had an idea about the Epley) and I did the maneuver at home, went to bed, and when I woke up the BPPV was gone. It has never returned. Of course, the Epley did not have any effect on my other usual dizziness.
During those four days, I had no BPPV when tipping my head rightward, but I do remember having BPPV MUCH earlier one time while lying on my right side, maybe sometime between 2001 and 2002. The (very) few BPPV episodes I had before 2003 did not involve ear-thumping.
(continued...)
He was quite interested in the vascular-loop theory of dizziness, but when the MRA showed a small vascular loop on my RIGHT (normal-hearing) side, he decided it probably was not the cause of my dizziness. He thought my hearing loss was likely due to a “stroke” in the inner ear that hit the vessel supplying the high frequencies and part of the vestibular apparatus. This made excellent sense to me, because the loss has never fluctuated.
In 2002-03 I saw another neurologist for a second opinion. She did two more MRIs, and the radiologist wrote that the pattern of “small scattered lesions” had changed, which was consistent with MS but not specific for it. But the neurologist said the lesions could be due to migraine, blood pressure, cholesterol, etc. She, like the previous neurologist, gave me the impression that I only needed to come back if something really bad happened (which it never has) and that I did not have MS. She labeled me as having “benign paresthesias,” even though paresthesias were not my only symptoms!!
In 2006, after one of the “worse periods” of dizziness—when I would have days or weeks of feeling dizzier, even though I never have any real qualitative change in the dizziness (since 1999) or distinct attacks (since the late 1980s)—I went back to the neuro-otologist, who did another ENG (normal), had me try Ativan (which made me dizzier!), and then had me take allergy shots for two years, saying that allergies (which I never knew I had) can exacerbate inner-ear dizziness. At first I thought the shots helped, but it’s hard to tell for sure because the level of dizziness fluctuates frequently. Certainly there is NO seasonal component to my dizziness.
I understand why the doctors consider me a “difficult” patient, because I have had so many symptoms—and to complicate it, I have also had muscle achiness since the early 1990s (possibly a bit of atypical fibromyalgia) and now also joint problems (mainly my knees and big toes, probably due to years of being overweight). I take ibuprofen and acetaminophen constantly to keep the achiness under control. I am very physically active at least 3 days a week working in an insanely busy public library and I have tried to keep up with neighborhood walking on other days, but even normal activity soon makes me achy and fatigued. My arm and leg stamina is bad; my actual strength is normal, but after walking briskly for only two blocks, I must slow to an extremely slow pace. This is abnormal because 8 years ago when I started walking—at the same weight—I soon was able to walk VERY fast and long without getting any muscle fatigue, even my husband couldn’t keep up with me! I must now take two walking sticks on my neighborhood walks in order to walk at a normal pace. Doctors are not concerned about this because my gait and strength appear normal. They are not worried about what they can’t see. I have not seen a neurologist since 2003 because nothing dramatic has happened and I am deathly afraid of getting the “hypochondriac” label again, which poisons my relationship with regular doctors and makes me psychologically ill. I had NO history of depression or any other mental disorder until the neurologist put the hypochondriac label on me, after initially scaring me with “MS.” This contradiction, and the contradiction between knowing that something is wrong but not being “allowed” to talk to doctors about it anymore did cause me to be depressed for some time, but I got over it. But I cannot bring myself to enter that neurologist quicksand again, because my mental health is more important than my physical health!
With respect to the 2003 BPPV that I asked about, no, I did not fall or hit my head. One day I simply tipped my head leftward/backward and I felt dizzy and saw the ceiling jumping up and down (vertically) pretty fast. The beating/thumping in my right ear was exactly “co-terminous” with the ceiling-jumping. They would both start, increase, decrease, and stop at the same time as the other. This would occur every time I tipped my head leftward during the next four days (no unusual dizziness between the episodes). I did not see a doctor at that time, because I knew this was just BPPV, and I was not seeing my ENT in those years. Finally I reviewed the Epley manuever online (the vestibular therapist had done a couple of canalith-repositioning maneuvers with me “just in case” when I saw her in 2000, so I had an idea about the Epley) and I did the maneuver at home, went to bed, and when I woke up the BPPV was gone. It has never returned. Of course, the Epley did not have any effect on my other usual dizziness.
During those four days, I had no BPPV when tipping my head rightward, but I do remember having BPPV MUCH earlier one time while lying on my right side, maybe sometime between 2001 and 2002. The (very) few BPPV episodes I had before 2003 did not involve ear-thumping.
(continued...)
(continued...)
In September 1999 the dizziness worsened again, and now I also felt like when walking my feet were not always landing exactly where I intended--I was sometimes taking small "side steps" to keep my balance. In the next few weeks I got my first visual migraine (small blank spot in right eye which became a flashing "C" and expanded up and out to the right over half an hour--very typical, and my other two visual migraines, a month later and four months later, were basically the same, and I should say that around that time I was entering perimenopause full force, with heavy/irregular periods, thus hormone activity probably accounting for the new migraine activity). In September/November 1999 I also developed a sudden extreme sensitivity to high-pitched noises in my good ear, tingling and itching spots in various parts of my body (face, hands, feet, legs), and the painless shocks running in a semicircle around my eye and later into the side of my nose and upper lip, 90 percent on the left but sometimes on the right side. When I first (later) saw a diagram of the trigeminal nerve, I gasped--"those are my shocks!!" One of the worst things was a “stabbing itch” that was very persistent and annoying in my left nostril.
Was sent to neurologist in November 1999. He found nothing wrong except "past pointing to the left" and referred me to a neuro-otologist (ENT specializing in inner ear), saying he believed my dizziness was due to inner ear trouble and the other symptoms were due to my "paying too much attention to the sensations in my body," in his words. I guess he thought I was a hypochondriac, but that is not the case--until 1999, I never saw doctors except for female checkups and once a broken arm, and scoliosis in childhood.
The otologist, after a normal ENG, thought possible perilymph fistula due to the hearing loss occurring when I sneezed, but his "patch" surgery did not help me. CT scan of temporal bone showed nothing. He had me try Xanax (no help at all), Brandt-Daroff exercises (because by that time I had had a couple of slight left-side BPPV episodes when lying down in bed, with the ceiling jerking back and forth horizontally (unlike the vertical, up-and-down jerking of the 2003 episodes), and daily walking. I did improve somewhat in subsequent months, but the dizziness was ALWAYS there in an underlying way (motion sensitivity and a “whoosh” if I turned my head too fast or too far) and would go through periods of days or weeks when I would feel better... then worse again for no apparent reason. I kept a detailed journal but could discover no connection with the weather, eating salty food, caffeine, or anything else except I always noted that I felt better when I had a "short sleep" of 6 hours, as long as I had had normal 8-hour sleep in the past couple of days. Thus, MILD sleep deprivation did and still does make me feel more clear-headed. This basic pattern has not changed, although in recent years I SOMETIMES feel SLIGHTLY dizzier when a weather front comes through, or my tinnitus will change slightly--so perhaps I have a SLIGHT bit of secondary hydrops. (I learned all these causes of dizziness over years of self-study, reading Web sites and a dizziness forum with a couple of volunteer balance experts (professionals), since doctors could not ever tell me why I am dizzy.)
In May of 2000 I developed Lhermitte's, though I did not have any idea what it was at the time. Within the next couple of years I continued to have many spots of paresthesia in face, hands, legs, and feet--tingling, crawling, "cold" spots, extreme itchy spots, "bee stings," electric shocks, etc. Each one would last anywhere from part of a day to several weeks--and sometimes they (like the Lhermitte's) will go away completely and then return suddenly weeks or many months later in the same spot or a different spot.
The other major symptom occurred for a couple of weeks in the fall of 2000 and again for the whole summer of 2001: when reaching for certain vertical flat objects, such as the refrigerator door or drawer handles, or the back of a chair or the dishwasher top rack, I would consistently miss it the first time, coming up short--my hand would fly down past it. If I then looked directly at the object and concentrated a bit, I could grasp it easily. But during quick, normal movements around the kitchen, I was CONSTANTLY missing these things, not reaching quite far enough. Also when I’d try to lick my finger (when flipping through papers), I would miss my tongue the first time—my finger would hit on the side of my mouth. Otherwise my coordination was OK, although after my daily walk around the neighborhood I would come home feeling extra dizzy, "fat" in the mouth (hard to articulate words for a few minutes) and hands not “meeting” each other properly when I washed them, and with Lhermitte's, I think because of the internal heat of exercise.
In fall of 2000, thus a year after the main onset of symptoms, I saw another neurologist, a med-school professor specializing in dizziness with a PhD in auditory neuroscience as well as MD in neurology--thus, a real super-specialist, and I do think he was very smart and did his best to help me. At my first appointment he kept talking about MS (which shocked me, as no one had mentioned this and I was not thinking about it) and all but told me I had it (saying "That's MS" when I told him about what I now know is Lhermitte's--even though he already knew I had had a normal MRI a year earlier). However, my office exam was normal. He ordered another MRI which showed some "tiny" lesions but "no significant white-matter disease," then he never talked about MS again until I asked him, and he completely played it down and when I saw him the following year he put the "hypochondriac" label on me even though he claimed it was "part of the differential diagnosis" and thus he "had to bring it up." Unfortunately, this simply poisoned the thinking of my primary-care doctors and all subsequent doctors, because they took “hypochondriac” as a real diagnosis instead of "part of the differential." And after the second year, the neurologist stopped following me. So I was left on my own.
He did help me in that year, though, by prescribing Provigil and subsequently Ritalin, both of which helped the "dizzy-fog" concentration/attention problems greatly. In 2004 I switched to Strattera (atomoxetine, an ADD drug), which has been even better and allows me to concentrate and think reasonably well despite the continuing constant dizzy/woozy, "motion-sick" feeling. He sent me to vestibular therapy when I asked about it, though it did not help too much (it made me less sensitive to watching movement, such as traffic). He ordered more auditory testing including perilymph fistula pressure test (negative), acoustic reflex (all normal except the acoustic reflex DECAY was abnormal in the left ear, following the graph for "Nerve VIII disease"), and ABR. The ABR results showed big delays in both interwave and absolute latencies on both right and left sides (hearing is perfect on the right):
Absolute latencies (right, left):
I 2.11 3.60
II 2.93 5.04
III 4.08 6.88
IV 6.34 8.56
V 7.73 10.40
Interwave latencies:
Right: I-III delay 1.97; I-V delay 5.62
Left: I-III delay 3.28; I-V delay 6.80
He wrote in his report that this might mean a lesion at the cochlear ganglion on the left and "perhaps more proximally on the right." He labeled this "cranial neuropathy" in his report, but he never could give me a firm reason for it--"could have been a virus," he said, not very firmly.
(continued...)
In September 1999 the dizziness worsened again, and now I also felt like when walking my feet were not always landing exactly where I intended--I was sometimes taking small "side steps" to keep my balance. In the next few weeks I got my first visual migraine (small blank spot in right eye which became a flashing "C" and expanded up and out to the right over half an hour--very typical, and my other two visual migraines, a month later and four months later, were basically the same, and I should say that around that time I was entering perimenopause full force, with heavy/irregular periods, thus hormone activity probably accounting for the new migraine activity). In September/November 1999 I also developed a sudden extreme sensitivity to high-pitched noises in my good ear, tingling and itching spots in various parts of my body (face, hands, feet, legs), and the painless shocks running in a semicircle around my eye and later into the side of my nose and upper lip, 90 percent on the left but sometimes on the right side. When I first (later) saw a diagram of the trigeminal nerve, I gasped--"those are my shocks!!" One of the worst things was a “stabbing itch” that was very persistent and annoying in my left nostril.
Was sent to neurologist in November 1999. He found nothing wrong except "past pointing to the left" and referred me to a neuro-otologist (ENT specializing in inner ear), saying he believed my dizziness was due to inner ear trouble and the other symptoms were due to my "paying too much attention to the sensations in my body," in his words. I guess he thought I was a hypochondriac, but that is not the case--until 1999, I never saw doctors except for female checkups and once a broken arm, and scoliosis in childhood.
The otologist, after a normal ENG, thought possible perilymph fistula due to the hearing loss occurring when I sneezed, but his "patch" surgery did not help me. CT scan of temporal bone showed nothing. He had me try Xanax (no help at all), Brandt-Daroff exercises (because by that time I had had a couple of slight left-side BPPV episodes when lying down in bed, with the ceiling jerking back and forth horizontally (unlike the vertical, up-and-down jerking of the 2003 episodes), and daily walking. I did improve somewhat in subsequent months, but the dizziness was ALWAYS there in an underlying way (motion sensitivity and a “whoosh” if I turned my head too fast or too far) and would go through periods of days or weeks when I would feel better... then worse again for no apparent reason. I kept a detailed journal but could discover no connection with the weather, eating salty food, caffeine, or anything else except I always noted that I felt better when I had a "short sleep" of 6 hours, as long as I had had normal 8-hour sleep in the past couple of days. Thus, MILD sleep deprivation did and still does make me feel more clear-headed. This basic pattern has not changed, although in recent years I SOMETIMES feel SLIGHTLY dizzier when a weather front comes through, or my tinnitus will change slightly--so perhaps I have a SLIGHT bit of secondary hydrops. (I learned all these causes of dizziness over years of self-study, reading Web sites and a dizziness forum with a couple of volunteer balance experts (professionals), since doctors could not ever tell me why I am dizzy.)
In May of 2000 I developed Lhermitte's, though I did not have any idea what it was at the time. Within the next couple of years I continued to have many spots of paresthesia in face, hands, legs, and feet--tingling, crawling, "cold" spots, extreme itchy spots, "bee stings," electric shocks, etc. Each one would last anywhere from part of a day to several weeks--and sometimes they (like the Lhermitte's) will go away completely and then return suddenly weeks or many months later in the same spot or a different spot.
The other major symptom occurred for a couple of weeks in the fall of 2000 and again for the whole summer of 2001: when reaching for certain vertical flat objects, such as the refrigerator door or drawer handles, or the back of a chair or the dishwasher top rack, I would consistently miss it the first time, coming up short--my hand would fly down past it. If I then looked directly at the object and concentrated a bit, I could grasp it easily. But during quick, normal movements around the kitchen, I was CONSTANTLY missing these things, not reaching quite far enough. Also when I’d try to lick my finger (when flipping through papers), I would miss my tongue the first time—my finger would hit on the side of my mouth. Otherwise my coordination was OK, although after my daily walk around the neighborhood I would come home feeling extra dizzy, "fat" in the mouth (hard to articulate words for a few minutes) and hands not “meeting” each other properly when I washed them, and with Lhermitte's, I think because of the internal heat of exercise.
In fall of 2000, thus a year after the main onset of symptoms, I saw another neurologist, a med-school professor specializing in dizziness with a PhD in auditory neuroscience as well as MD in neurology--thus, a real super-specialist, and I do think he was very smart and did his best to help me. At my first appointment he kept talking about MS (which shocked me, as no one had mentioned this and I was not thinking about it) and all but told me I had it (saying "That's MS" when I told him about what I now know is Lhermitte's--even though he already knew I had had a normal MRI a year earlier). However, my office exam was normal. He ordered another MRI which showed some "tiny" lesions but "no significant white-matter disease," then he never talked about MS again until I asked him, and he completely played it down and when I saw him the following year he put the "hypochondriac" label on me even though he claimed it was "part of the differential diagnosis" and thus he "had to bring it up." Unfortunately, this simply poisoned the thinking of my primary-care doctors and all subsequent doctors, because they took “hypochondriac” as a real diagnosis instead of "part of the differential." And after the second year, the neurologist stopped following me. So I was left on my own.
He did help me in that year, though, by prescribing Provigil and subsequently Ritalin, both of which helped the "dizzy-fog" concentration/attention problems greatly. In 2004 I switched to Strattera (atomoxetine, an ADD drug), which has been even better and allows me to concentrate and think reasonably well despite the continuing constant dizzy/woozy, "motion-sick" feeling. He sent me to vestibular therapy when I asked about it, though it did not help too much (it made me less sensitive to watching movement, such as traffic). He ordered more auditory testing including perilymph fistula pressure test (negative), acoustic reflex (all normal except the acoustic reflex DECAY was abnormal in the left ear, following the graph for "Nerve VIII disease"), and ABR. The ABR results showed big delays in both interwave and absolute latencies on both right and left sides (hearing is perfect on the right):
Absolute latencies (right, left):
I 2.11 3.60
II 2.93 5.04
III 4.08 6.88
IV 6.34 8.56
V 7.73 10.40
Interwave latencies:
Right: I-III delay 1.97; I-V delay 5.62
Left: I-III delay 3.28; I-V delay 6.80
He wrote in his report that this might mean a lesion at the cochlear ganglion on the left and "perhaps more proximally on the right." He labeled this "cranial neuropathy" in his report, but he never could give me a firm reason for it--"could have been a virus," he said, not very firmly.
(continued...)
Dear Dr. Antony,
Thanks for your interest in my strange history. Here it is in a bit more detail (trying to answer your questions sufficiently) I have to split it into separate posts because it is too long (sorry).
I had a tendency to motion sickness even in childhood, like all my family (we all got carsick). I threw up after half a day working in a cannery during college, from watching the conveyor belts in front of me! I know that motion sickness goes with migraine, though I did not know I was a migraineur until 1999 when I had the visual aura. I had mild headaches in high school, never told anyone about them (I thought everyone had headaches). NO ear or dizziness problems at all. Always healthy, nothing in my medical history except idiopathic adolescent scoliosis diagnosed in fourth grade (was not braced). I still have the scoliosis, but it's not progressing and it causes me no trouble--have never had back pain.
In 1983, at age 26, about 2-3 months after the birth of my first child, I woke up one morning, tried to get out of bed, and suddenly fell backward on my pillow, to my great surprise. That whole morning and part of the afternoon I was very dizzy (not spinning, but I had to hold on to walls to walk) and nauseated. No other symptoms and no ringing, hearing loss, headache, etc., nothing except dizziness and nausea. That is still to date my worst dizziness "attack." I suppose (now) that could have been a migraine attack, or a touch of labyrinthitis, or a slight initial postpartum attack of MS? Who knows. It resolved completely and I never saw a doctor about it or gave it any real thought at the time.
In the late 1980s, in the years after my second child's birth which was in 1985, I had at least two more distinct half-day attacks of dizziness and nausea, though not as severe as the first. Again, NO hearing loss or ringing or other problems. A few weeks or months after his birth, I did have numbness in my right hip, which went away after a long time but has returned periodically since then.
In those years, by 1987 at the latest, I developed a low-level, constant (i.e., all the time) woozy/dizzy feeling. It was (and still is) like "motion sickness in the head." Walking briskly to the kids' school and back, 10 minutes, made me feel "carsick" for at least an hour afterward. I tried to do aerobics (the 1980s exercise craze) but exercise just made me feel very woozy after a few minutes. I thought I was dizzy because I was out of shape and overweight and had a not-so-great inner ear (due to the motion sickness tendency), so I never really talked to a doctor about it. It made concentrating on my work (copyediting) difficult but not impossible.
Also in the early 1990s I began getting occasional sharp shooting pains in my scalp or side of my face, though not the electrical quality of the post-1999 shocks. I was vaguely afraid these pains might foreshadow a stroke, but I really didn’t pay attention to them. (I had no medical knowledge at that time and paid no real attention to my health.)
Through the 1990s this constant low-level woozy/dizzy feeling got very, very gradually worse, without any distinct attacks. I just know that it was definitely worse at the end of the 1990s compared to the beginning of the decade. By the late 1990s I did not even want to take a shower in the morning before going upstairs to work (I worked as a freelancer at home), because even that much head/body movement would make me feel motion-sick-in-the-head. This feeling had a definite circadian rhythm. I would wake up feeling OK; about 9:00 a.m. or so the motion sensitivity would hit full force and just the eye movement of reading would make me woozy and cause serious trouble concentrating. About 11:00 a.m. it would ease somewhat. At 1:30 it was back full force, and I would usually just go lie down, close my eyes and take a short nap. At 4:00 pm, it was like a veil would lift and my head would be clear! In early evening the "motion sickness" came back. After about 10:00 pm my head was clear again, and I could work productively. Thus, bad times were 9:00 am, 1:30 pm, 7:00 pm. (But this was not due to any effect of eating meals, because I did not eat at regular times, only when I got hungry.) Good times were 11:00 a.m., 4:00 pm, and 10:00 pm approximately. This circadian variation was very pronounced on days when I'd had sufficient sleep (8 hours). On days when I had only slept about 6 hours, my head felt MUCH better and clearer, and the variation throughout the day was much, much less noticeable. This makes me think that some hormone that varies through the day was making the dizziness worse or better, but no doctor seemed interested in this. Since I have been taking Strattera, since 2004, I am able to concentrate all day and the circadian variation in dizziness is much less pronounced. I should say that another interesting fact is that if I have a very busy or unusual day such that I eat nothing after breakfast, or eat VERY little throughout the day, not more than a few bites, the dizziness and achiness usually improve greatly after 6-8 hours. Another mystery that no doctor seems interested in, even though it seems to me it must be a significant clue! My theory is that some kind of stress hormone kicks in when I’m sleep-deprived or my blood sugar goes low, and the stress hormone makes my head and body feel better?
Now, the watershed year of 1999: Over perhaps a two-week period in June, I had maybe a couple dozen extremely sharp, painful, split-second electric shocks below my left ear, and one or two below my right ear. They would zap me a few times over a few minutes, then nothing til later in the day or the next day, then skip a couple of days, very irregular, but they really got my attention! Again, I didn't see a doctor, and the shocks stopped.
Only a few weeks later, on July 2, 1999, I sneezed very hard twice in quick succession (NOT holding in the sneezes), and at that moment I lost most of the hearing in my left ear (NO previous hearing loss whatsoever), accompanied by tinnitus and a great increase in dizziness, with some positional dizziness for the first time (distinct sensation of dizziness when I turned my head, bent over to tie my shoe, etc., though I did not have BPPV til later). I saw my regular doctor a few days later because the dizziness was preventing me from working. I told him about the hearing loss but he did not test my hearing in any way, and I vaguely assumed something was "plugged" and my hearing would return. Not until a month later was I sent to an ENT, who diagnosed the SNHL in the left ear (right ear completely normal). Left-side hearing is normal to 500 Hz, at 750 it drops like a waterfall to 75 or 80 dB, and in higher frequencies it drops again to 110. The hearing loss has never fluctuated as far as I can tell, and it has always appeared about the same on testing. Speech discrimination is poor. (But I just received a Baha a couple of weeks ago, and I am THRILLED to be able to hear and understand people on my left side again!)
MRI with contrast, in August 1999, was normal (though in later years, when the radiologist compared it to a later MRI, he said there WERE "small scattered lesions" on it, but at the time these were not thought significant enough to mention, presumably because I had not yet reported to doctors the under-ear shocks I’d had in June, which I now believe was a first, minor attack of bilateral trigeminal neuralgia. The "extra" dizziness subsided back to its usual lower level over a few weeks.
(continued...)
Thanks for your interest in my strange history. Here it is in a bit more detail (trying to answer your questions sufficiently) I have to split it into separate posts because it is too long (sorry).
I had a tendency to motion sickness even in childhood, like all my family (we all got carsick). I threw up after half a day working in a cannery during college, from watching the conveyor belts in front of me! I know that motion sickness goes with migraine, though I did not know I was a migraineur until 1999 when I had the visual aura. I had mild headaches in high school, never told anyone about them (I thought everyone had headaches). NO ear or dizziness problems at all. Always healthy, nothing in my medical history except idiopathic adolescent scoliosis diagnosed in fourth grade (was not braced). I still have the scoliosis, but it's not progressing and it causes me no trouble--have never had back pain.
In 1983, at age 26, about 2-3 months after the birth of my first child, I woke up one morning, tried to get out of bed, and suddenly fell backward on my pillow, to my great surprise. That whole morning and part of the afternoon I was very dizzy (not spinning, but I had to hold on to walls to walk) and nauseated. No other symptoms and no ringing, hearing loss, headache, etc., nothing except dizziness and nausea. That is still to date my worst dizziness "attack." I suppose (now) that could have been a migraine attack, or a touch of labyrinthitis, or a slight initial postpartum attack of MS? Who knows. It resolved completely and I never saw a doctor about it or gave it any real thought at the time.
In the late 1980s, in the years after my second child's birth which was in 1985, I had at least two more distinct half-day attacks of dizziness and nausea, though not as severe as the first. Again, NO hearing loss or ringing or other problems. A few weeks or months after his birth, I did have numbness in my right hip, which went away after a long time but has returned periodically since then.
In those years, by 1987 at the latest, I developed a low-level, constant (i.e., all the time) woozy/dizzy feeling. It was (and still is) like "motion sickness in the head." Walking briskly to the kids' school and back, 10 minutes, made me feel "carsick" for at least an hour afterward. I tried to do aerobics (the 1980s exercise craze) but exercise just made me feel very woozy after a few minutes. I thought I was dizzy because I was out of shape and overweight and had a not-so-great inner ear (due to the motion sickness tendency), so I never really talked to a doctor about it. It made concentrating on my work (copyediting) difficult but not impossible.
Also in the early 1990s I began getting occasional sharp shooting pains in my scalp or side of my face, though not the electrical quality of the post-1999 shocks. I was vaguely afraid these pains might foreshadow a stroke, but I really didn’t pay attention to them. (I had no medical knowledge at that time and paid no real attention to my health.)
Through the 1990s this constant low-level woozy/dizzy feeling got very, very gradually worse, without any distinct attacks. I just know that it was definitely worse at the end of the 1990s compared to the beginning of the decade. By the late 1990s I did not even want to take a shower in the morning before going upstairs to work (I worked as a freelancer at home), because even that much head/body movement would make me feel motion-sick-in-the-head. This feeling had a definite circadian rhythm. I would wake up feeling OK; about 9:00 a.m. or so the motion sensitivity would hit full force and just the eye movement of reading would make me woozy and cause serious trouble concentrating. About 11:00 a.m. it would ease somewhat. At 1:30 it was back full force, and I would usually just go lie down, close my eyes and take a short nap. At 4:00 pm, it was like a veil would lift and my head would be clear! In early evening the "motion sickness" came back. After about 10:00 pm my head was clear again, and I could work productively. Thus, bad times were 9:00 am, 1:30 pm, 7:00 pm. (But this was not due to any effect of eating meals, because I did not eat at regular times, only when I got hungry.) Good times were 11:00 a.m., 4:00 pm, and 10:00 pm approximately. This circadian variation was very pronounced on days when I'd had sufficient sleep (8 hours). On days when I had only slept about 6 hours, my head felt MUCH better and clearer, and the variation throughout the day was much, much less noticeable. This makes me think that some hormone that varies through the day was making the dizziness worse or better, but no doctor seemed interested in this. Since I have been taking Strattera, since 2004, I am able to concentrate all day and the circadian variation in dizziness is much less pronounced. I should say that another interesting fact is that if I have a very busy or unusual day such that I eat nothing after breakfast, or eat VERY little throughout the day, not more than a few bites, the dizziness and achiness usually improve greatly after 6-8 hours. Another mystery that no doctor seems interested in, even though it seems to me it must be a significant clue! My theory is that some kind of stress hormone kicks in when I’m sleep-deprived or my blood sugar goes low, and the stress hormone makes my head and body feel better?
Now, the watershed year of 1999: Over perhaps a two-week period in June, I had maybe a couple dozen extremely sharp, painful, split-second electric shocks below my left ear, and one or two below my right ear. They would zap me a few times over a few minutes, then nothing til later in the day or the next day, then skip a couple of days, very irregular, but they really got my attention! Again, I didn't see a doctor, and the shocks stopped.
Only a few weeks later, on July 2, 1999, I sneezed very hard twice in quick succession (NOT holding in the sneezes), and at that moment I lost most of the hearing in my left ear (NO previous hearing loss whatsoever), accompanied by tinnitus and a great increase in dizziness, with some positional dizziness for the first time (distinct sensation of dizziness when I turned my head, bent over to tie my shoe, etc., though I did not have BPPV til later). I saw my regular doctor a few days later because the dizziness was preventing me from working. I told him about the hearing loss but he did not test my hearing in any way, and I vaguely assumed something was "plugged" and my hearing would return. Not until a month later was I sent to an ENT, who diagnosed the SNHL in the left ear (right ear completely normal). Left-side hearing is normal to 500 Hz, at 750 it drops like a waterfall to 75 or 80 dB, and in higher frequencies it drops again to 110. The hearing loss has never fluctuated as far as I can tell, and it has always appeared about the same on testing. Speech discrimination is poor. (But I just received a Baha a couple of weeks ago, and I am THRILLED to be able to hear and understand people on my left side again!)
MRI with contrast, in August 1999, was normal (though in later years, when the radiologist compared it to a later MRI, he said there WERE "small scattered lesions" on it, but at the time these were not thought significant enough to mention, presumably because I had not yet reported to doctors the under-ear shocks I’d had in June, which I now believe was a first, minor attack of bilateral trigeminal neuralgia. The "extra" dizziness subsided back to its usual lower level over a few weeks.
(continued...)
Hi Nancy,
Thank you for the post and the kind words. Indeed your case is a bit challenging, and I wonder if there are answers. In such challenging situations (unsolvable riddles, difficult analysis, difficult patient…..you know what) we solve it by referring the patient to a higher institution or a special specialist :- )
As an introduction I must say that vertigo itself is a topic, which, like many other in medical science, is evolving. We have not as yet found all the answers.
We will try to rearrange your history in a way which is familiar to us.
Your illness starts in 1980 when you were 23 yr age. Until then you were apparently alright? What do you think was the cause of your ‘vertigo’? Do you remember the first episode of vertigo? Can you describe it?
Do you have anything important in your medical history prior to 1980?
1980 to 1999 you had mild vertigo (description?: Episodic or always, duration of each episode, how brought on, how relieved and accompaniments, any loss of consciousness etc.)
1999: Migraine with aura (How was the first episode, can you describe?) Hearing impairment (more info required)
ABR abnormal bilaterally. What was the abnormality?
You were continuing to have the illnesses ?(1. Vertigo 2. Migraine with aura 3. Hearing impairment) until 2003?
2003: BPPV. How was the first episode? Did you fall? (Did you hit your head?)What brought the vertigo on, how long did it last, what accompaniment/s? How frequent it was later, were you completely alright between episodes ? Was the vertigo different from the first? Any hearing impairment, fullness or ringing in the ear/s? If so, which ear? You never had BPPV or BPPV plus on tipping to right side? The UP-DOWN nystagmus you describe needs clarification. ‘Up and Down’ nystagmus in medical circles would mean the eyes jerk towards scalp and feet.
“Paresthesias”, painful/ painless shock like sensations and twichings on face, Lhermitte's etc would point to Multiple Sclerosis. We can even include you other symptoms of migraine and vertigo too here; as MS is a great mimicker.
I have been asking myself if I believe in Migraine associated vertigo. These are just educated guesses. It is ‘understood’ that in some people the typical whirling may not be seen.
What all tests you have taken, X-rays, and other imaging studies and what were the results? What is the present ESR? What are the medicines you now are on? Are you a diabetic, hypertensive or have any other illness of importance?
And lastly, how/what is your present illness/ problems?
Best rgds,
Thomas Antony
Thank you for the post and the kind words. Indeed your case is a bit challenging, and I wonder if there are answers. In such challenging situations (unsolvable riddles, difficult analysis, difficult patient…..you know what) we solve it by referring the patient to a higher institution or a special specialist :- )
As an introduction I must say that vertigo itself is a topic, which, like many other in medical science, is evolving. We have not as yet found all the answers.
We will try to rearrange your history in a way which is familiar to us.
Your illness starts in 1980 when you were 23 yr age. Until then you were apparently alright? What do you think was the cause of your ‘vertigo’? Do you remember the first episode of vertigo? Can you describe it?
Do you have anything important in your medical history prior to 1980?
1980 to 1999 you had mild vertigo (description?: Episodic or always, duration of each episode, how brought on, how relieved and accompaniments, any loss of consciousness etc.)
1999: Migraine with aura (How was the first episode, can you describe?) Hearing impairment (more info required)
ABR abnormal bilaterally. What was the abnormality?
You were continuing to have the illnesses ?(1. Vertigo 2. Migraine with aura 3. Hearing impairment) until 2003?
2003: BPPV. How was the first episode? Did you fall? (Did you hit your head?)What brought the vertigo on, how long did it last, what accompaniment/s? How frequent it was later, were you completely alright between episodes ? Was the vertigo different from the first? Any hearing impairment, fullness or ringing in the ear/s? If so, which ear? You never had BPPV or BPPV plus on tipping to right side? The UP-DOWN nystagmus you describe needs clarification. ‘Up and Down’ nystagmus in medical circles would mean the eyes jerk towards scalp and feet.
“Paresthesias”, painful/ painless shock like sensations and twichings on face, Lhermitte's etc would point to Multiple Sclerosis. We can even include you other symptoms of migraine and vertigo too here; as MS is a great mimicker.
I have been asking myself if I believe in Migraine associated vertigo. These are just educated guesses. It is ‘understood’ that in some people the typical whirling may not be seen.
What all tests you have taken, X-rays, and other imaging studies and what were the results? What is the present ESR? What are the medicines you now are on? Are you a diabetic, hypertensive or have any other illness of importance?
And lastly, how/what is your present illness/ problems?
Best rgds,
Thomas Antony
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