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Old 11-04-2011, 11:47 AM   #1
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Unhappy incapacitated with vertigo

Hi there,

I am a 24 year old male who has been suffering from chronic vertigo for just about the last 4 years. I get very serious spinning vertigo every couple of days and for the rest of the time I am off balance and have oscillopsia in my vision. I have no hearing loss or tinnitus — only vertigo / balance symptoms however I do sometimes have ghosty vision but I think that was the bi-product of recent LASIK eye surgery. I am in-shape and not overweight, I don't smoke or drink and eat a balanced diet.

Essentially it all started 4 years ago with a massive violent vertigo episode that left me stumbling to the washroom trying desperately to keep my balance amongst a spinning room. Since that point on, my life has never even remotely been the same. My vertigo is completely objective — everything spins round and round at very fast speeds to the point where I can't see anything but blur. I've had nystagmus a few of the times but for the most part I don't usually get it. I am completely incapacitated during these times. It literally feels like a pressure is building deep in my brain and that I'm having a stroke.

Since late 2008 I've had a barrage of tests and still have no firm diagnosis. I've been to the ER a few times and let off with a misdiagnosis of BBPV. This vertigo is not triggered by positioning or specific movements. It comes about at various times, watching a movie, waiting in a waiting room, at a restaurant, while walking etc.

Here is a timeline of the tests I've had:

2008 — CT SCAN (clear)
2008 — Neurologist appt (found nothing other than bad balance)
2008 — MRI (clear)
2009 — ENT appt (diagnosed me with TMJ, I have no jaw/face pain at all)
2009 — Various blood testing (all fine)
2010 — Neurotologist appt (EEG, Rotary Chairs, Audiogram - finds bilateral vestibular loss, no idea what caused it)
2011 — ECG (clear)
2011 — Neck ultrasound (nothing abnormal)
2011 — Holter monitor (nothing abnormal)
2011 — MRI #2 (clear)
2011 — More blood tests (all fine)
2011 — Caloric Testing (no nystagmus)

I've tried a whole bunch of drugs to try and tame this vertigo but nothing at all has even come close to slowing it down. I've tried Diazepam, Ativan, Betahistine, Gravol, Serc, Antivert, Flunarizine, Verapimil etc.

With all this I've never been diagnosed. My neurotologist (otologist + neuro) has found bilateral vestibular loss which means my inner ear balance systems are next to dead on both sides. This should mean that my vestibular hair cells shouldn't have enough juice left to trigger massive episodes of vertigo. This only leads us to think that the problem must be a central one.

Now, my question is: Is it possible for this to be caused my a neurological mechanism that hasn't picked up on MRI? What could I be looking for / what tests can I have left to do?

Here I am entering my fourth year and I am completely battered by this disease. I know a lot of people disregard vertigo as an insignificant symptom but it has honestly ruined my life for the last 3-4 years. Everything I do is effected by this.

If you have any suggestions, please let me know.

Thanks

 
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Old 11-04-2011, 02:24 PM   #2
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Re: incapacitated with vertigo

How long did you take Verapamil, and what was the dose?

 
Old 11-04-2011, 03:00 PM   #3
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Re: incapacitated with vertigo

Quote:
Originally Posted by bindar View Post
How long did you take Verapamil, and what was the dose?
I've been taking verapamil since September at 80mg before bed.

 
Old 11-05-2011, 11:12 PM   #4
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Re: incapacitated with vertigo

That is a good start. If you dont achieve any results after a few weeks, talk to your doctor about raising the dose. Many neurologists will use up to 240mg when appropriate.

 
Old 11-11-2011, 05:39 PM   #5
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Re: incapacitated with vertigo

I know exactly how you feel. I have had this for 5 months. I have had a lot of the tests you have had. I am down to muscles in neck possibly pinching the nerve. My balance therapist thinks I have 2 problems the inner ear and neck. So possibly the muscles and possibly allergies. I am going to try somewhere like Chicago or Cleveland Clinic to see what they think.

 
Old 11-12-2011, 03:01 PM   #6
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Re: incapacitated with vertigo

Through all of my research sometimes mold in your home can cause it. Have you lived in the same place all this time? It can be white in color also. If so, leave for a while and see if you improve at all. Have you tried the anti-depressants yet? Have they checked your hormones?
I feel exactly as you do. I just had many of those tests last week and will know the results on wed. Can you remember what was going on before it happened? Were you stressed a lot?
Hang in there....I feel hopeful we will find an answer.


Quote:
Originally Posted by yokid View Post
Hi there,

I am a 24 year old male who has been suffering from chronic vertigo for just about the last 4 years. I get very serious spinning vertigo every couple of days and for the rest of the time I am off balance and have oscillopsia in my vision. I have no hearing loss or tinnitus — only vertigo / balance symptoms however I do sometimes have ghosty vision but I think that was the bi-product of recent LASIK eye surgery. I am in-shape and not overweight, I don't smoke or drink and eat a balanced diet.

Essentially it all started 4 years ago with a massive violent vertigo episode that left me stumbling to the washroom trying desperately to keep my balance amongst a spinning room. Since that point on, my life has never even remotely been the same. My vertigo is completely objective — everything spins round and round at very fast speeds to the point where I can't see anything but blur. I've had nystagmus a few of the times but for the most part I don't usually get it. I am completely incapacitated during these times. It literally feels like a pressure is building deep in my brain and that I'm having a stroke.

Since late 2008 I've had a barrage of tests and still have no firm diagnosis. I've been to the ER a few times and let off with a misdiagnosis of BBPV. This vertigo is not triggered by positioning or specific movements. It comes about at various times, watching a movie, waiting in a waiting room, at a restaurant, while walking etc.

Here is a timeline of the tests I've had:

2008 — CT SCAN (clear)
2008 — Neurologist appt (found nothing other than bad balance)
2008 — MRI (clear)
2009 — ENT appt (diagnosed me with TMJ, I have no jaw/face pain at all)
2009 — Various blood testing (all fine)
2010 — Neurotologist appt (EEG, Rotary Chairs, Audiogram - finds bilateral vestibular loss, no idea what caused it)
2011 — ECG (clear)
2011 — Neck ultrasound (nothing abnormal)
2011 — Holter monitor (nothing abnormal)
2011 — MRI #2 (clear)
2011 — More blood tests (all fine)
2011 — Caloric Testing (no nystagmus)

I've tried a whole bunch of drugs to try and tame this vertigo but nothing at all has even come close to slowing it down. I've tried Diazepam, Ativan, Betahistine, Gravol, Serc, Antivert, Flunarizine, Verapimil etc.

With all this I've never been diagnosed. My neurotologist (otologist + neuro) has found bilateral vestibular loss which means my inner ear balance systems are next to dead on both sides. This should mean that my vestibular hair cells shouldn't have enough juice left to trigger massive episodes of vertigo. This only leads us to think that the problem must be a central one.

Now, my question is: Is it possible for this to be caused my a neurological mechanism that hasn't picked up on MRI? What could I be looking for / what tests can I have left to do?

Here I am entering my fourth year and I am completely battered by this disease. I know a lot of people disregard vertigo as an insignificant symptom but it has honestly ruined my life for the last 3-4 years. Everything I do is effected by this.

If you have any suggestions, please let me know.

Thanks

 
Old 11-15-2011, 08:33 AM   #7
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Re: incapacitated with vertigo

Have you doctored with any of the big experts in the field? I'm finding information online that indicates that Timothy C. Hain from Chicago (AKA Dizzy Doctor) and possibly John Hopkins University Hospital in Baltimore are two places you may be able to get help when all else fails. Of course, the information I'm going by is basically advertising and anecdotal - I'm not affiliated with either one and have never used the services of either one. I just think if I had it as bad and as long as you do/have I would probably make a special effort to seek help among the top experts in the field, assuming it's possible to ascertain who those are.

I realize that cost and travel are both obstacles that are not always so easy to overcome. I cannot really offer any help or ideas on either one of those.

 
Old 11-15-2011, 11:09 AM   #8
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Re: incapacitated with vertigo

After severe heart arrhythmias for a full 24 hours, I decided to discontinue the use of Verapamil. Now I'm back being on no medication and still feel like hell.

I haven't been checked for hormones but I have lived in 2 different locations and have been on various trips during these years and the vertigo still persisted.

 
Old 11-15-2011, 07:43 PM   #9
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Re: incapacitated with vertigo

Talk to your doctor about another medication like topamax or nortriptyline. It is not uncommon to have side effects with medication, so it is important to find one that you can live with. Dont give up, keep being persistent, that is the only way to beat this. Hormones or mold are very unlikely causes, focus on youur medication trials for MAV and see if that helps.

 
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