Absent VEMP in both ears

[lararobin]

I have been dizzy since a c-section in May 2008. It is a slight imbalance/lightheaded feeling. Almost like I am a little hungover for 10 months. In addition, to this strange symptom... I have had an abnormal MRI with tiny multiple scattered T2 hyperintensity foci. I have seen 3 neurologists who all say it doesn't look like MS or present like a MS lesion. I have tiny little wormy feelings come and go primarily in my legs as well. These twitches and sensations have been present since I was hospitalized in 2003 for an unknown viral illness which caused a high fever and vomiting for 5 days/nights. It was no fun at all! After my hospitalization I sought the care of a neurologist for my twitches and wormy sensations. He then ordered an MRI and identified these abnormal tiny white spots. Over the past 5 1/2 years, I have had multiple MRIs with contrast and MRV/MRAs with contrast and all have remained unchanged. Everything is exactly the same. My thoracic and cervical MRIs are completely normal. I have also had a normal CT Angiogram with contrast of my head and neck which were normal. It is my primary neurologists opinion (and 2 other 2nd opinion Neurologists) that these tiny litte spots are most likely related to this unknown virus back in 03. All of them seem to believe it doesn't "look" like MS.

Little backstory... now here is my question! In my quest to figure out my dizziness, I went to a Neuro-otologist at UT Southwestern here in Dallas. He ran 4 different inner ear tests on me. My ENG was normal, my spinning chair and platform test were normal. Hearing completely normal. But my VEMP (Vestibular Evoked Myogenic Potentials) was absent in both ears. Now I am back worried about MS again. Does this mean I need to get a spinal tap to see if an MS diagnosis can finally be made? My dizziness is constant and always there. It is a little worse when I am tired and as the day wears on it gets a bit more severe. Overall, I can drive, eat, take care of my children and otherwise am a healthy 33 yr old Mom. I workout regularly... run, elliptical machine, strength training, etc etc. And, I don't have any other symptoms of MS. The Neuro-otologist told me to stop worrying about MS... it's not MS and it will probably resolve in 3-5 years. He said it is usually caused by a blood clot or a hypotensive event which could have occurred during my c-section. I did have a severe drop in blood pressure and they had to administe epinephrine. Which I hear is common.

Can anyone make any recommendations or share any thoughts on my situation? Also, I am seeing a Neuro-chiropracter just in case they could help with the dizziness. In case it was related to my alignment. I have tried acupuncture as well.

Thanks.

[Nancy T]

How did the neurotologist interpret the VEMP test--what did he say the absent VEMP meant?

Sorry I don't know anything about VEMP; maybe Quix does. It's a relatively new test. You got the works with vestibular testing!

If you google "vemp", the first page that comes up is Dr. Hain's detailed explanations. It does not seem to have anything to do with testing for MS.

If you do not have any other symptoms, it really sounds like you CAN stop worrying about MS.

Dizziness can be difficult to figure out. Sounds like you've had a lot of MRIs and seen a top neurotologist. I've had constant low-level dizziness that sounds like it's similar to what you describe, since the 1980s, NO definite explanation, just a lot of stuff ruled out.

Have they had you try vestibular rehab therapy for the dizziness?

Keeping active is the BEST thing you can do for the dizziness. If your brain is receiving inputs from movement, it learns to compensate over time for whatever damage was done to your vestibular system.

Any history of migraines, personal or family? Migraine-associated dizziness is more common than most people (including many doctors) realize.

I certainly don't like the constant low-level dizziness, but I count myself lucky it's not worse. It could be LOTS worse. I, too, am able to work and was able to take of my kids when they were younger.

Best of luck,
Nancy

[lararobin]

When I googled VEMP, actually a ton comes up on it being a useful tool in MS diagnosis. I guess many MS patients have absent VEMP findings. It made me a bit nervous!

Thank you for the encouraging words and every day I am grateful for being able to do everything I did before this condition. I really live my same life except by the end of the day my patience is really worn down having to fight the sensation all day. But overall, if I live a long otherwise healthy life and I am able to raise my kiddos... I am beyond happy.

I am trying to work out at least 5 times a week. I know this helps your overall health and I'm hoping it will eventually help my dizziness.

It does seem strange to me that this all started abruptly after my c-section. I noticed it in the hospital even, but assumed it was from my pain meds given to me for my incision. I had never been on pain meds before of any kind, so I figured the Vicodin was throwing me for a loop. Even driving home from the hospital I told my Mom it felt like I had 2 glasses of vino for breakfast :) If it was MS, I wonder if it could come on that fast and stay consistent for 10 mos. You would think it might be in the months after my daughter's birth, but not immediately in the hospital. I had read the MS symptoms can worsen after the birth of a child, which is why I went straight to my Neurologist when the dizziness didn't go away in the 1st month after having Kate. At first my OB thought I might be anemic or have a thyroid imbalance, but my labs were normal. Then I decided to head to my Neuro. My MRI in June right after Kate was born was identical to all my previous MRIs and I even had contrast. I ended up with a CT Angiogram b/c I was referred to a hematologist after my Neuro ran some blood work on me (he checked for everything autoimmune under the sun) and the only test that came back abnormal was my PTT. Then I had to be referred to a Hematologist who ran some additional blood work and said I had APS (Antiphospholipid Antibody Syndrome). I sought a 2nd opinion at UT Southwestern and my 2nd opinion Hematologist said the 1st guy was completely wrong. Since then my PTT has normalized and he is monitoring my every 3 mos b/c I do have 1 elevated antiphospholipid antibody IGA. My IGG and IGM have always been normal. My IGA is low titer and he thinks it will most likely go back into normal ranges once my body fully recovers from having a baby.

OK, tons of info! Sorry for the dragging post, but I wanted everyone to have as much info on me as possible to be able to give their honest opinions on what might be going on.

Thanks again for the encouraging post.

Lara

[Nancy T]

Hi Lara. You're right about VEMP being abnormal in MS; that should teach me to reach a conclusion based on one site (which I didn't read thoroughly, even that one!).

On the other hand, it sounds like an abnormal VEMP isn't SPECIFIC for MS--other things could cause it, too. Its relevance to possible MS would no doubt depend on your other symptoms and test results.

I have highly abnormal auditory evoked potentials (never had VEMP), but the neurologist didn't seem to think this meant much in the context of an essentially normal neuro exam and only nonspecifically spotty MRIs (despite many symptoms, some of them very suggestive of MS, such as Lhermitte's). So, I would be surprised if an abnormal VEMP result would get you anywhere in a diagnosis of MS unless there were other things more specific for it. In other words, it's probably much more likely that the abnormal VEMP is due to some other vestibular problem than to MS. (My rather uneducated guess.)

Sounds like you have had quite a confusing time with all the blood tests and whatnot. And yes, it IS very strange that your dizziness started after a C-section. However, perhaps there was some vascular event (as your doctor mentioned) during the C-section that damaged your inner ear. The blood flow to the inner ear is pretty fragile, and those structures, once damaged, don't recover. My otoneurologist's theory for my sudden hearing loss and worse dizziness when I sneezed 10 years ago is that it was a small "stroke" in the inner ear.

Just one more thought... before the C-section, were you in regular labor, with a lot of straining? That CAN cause a perilymph fistula (tear in one of the membranes separating the inner from the middle ear). However, PLF usually causes much worse dizziness and often hearing loss too. Probably your neurotologist considered that in the differential diagnosis and would have figured it out during all the testing you had.

So what did the neurotologist say that the VEMP result meant?

[lararobin]

He really didn't comment on it directly. I am kicking myself for not asking him to give me his specific opinion on that one test. He said overall he believes we will never know what caused my dizziness/lightheadedness. But usually it is due to a blood clot or hypotensive event. Either could have occurred during my childbirth process and c-section. I was given a ton of Pitocin in a early induction due to low amniotic fluid and high blood pressure, but ended up in a c-section b/c her hand was over her head. So I never got to the pushing part... unfortunately. So upset still to this day about having a c-section. He did believe it would most likely resolve in 3-5 years (he said it takes "forever" to get better), but it was his opinion it would most likely be better eventually. He suggested vestibular therapy to help in the mean time. I am going to request a follow-up appointment to print out all of the info I have found online and talk to him about my concerns. I want to make sure I feel like he has spent the proper amount of time on my case. I felt a bit rushed the last time. He is a renowned Neuro-otologist and is always traveling the world to lecture, so who knows when I will be able to get back in! :)

Thanks again for your help and thoughts.

[Nancy T]

Hi Lara. The "3 to 5 years" is just something they pick out of a hat, I think. If you had only been having this for a few weeks, they would say "six months." They just want the patient to believe they'll get better. Because most of the time, people do get better--they compensate from an event causing vestibular damage over a period of weeks or months.

Some people don't compensate well for some reason or another, and vestibular rehab can help. Sometimes low doses of anti-anxiety drugs are helpful in long-term cases, as they dampen the vestibular system a bit (which is "wired" into the autonomic nervous system, which in turn controls the fight-or-flight response, which is why so many dizzy people have problems with anxiety, panic, agoraphobia, etc.).

Hope you succeed in getting a bit more info from the guy (especially about the meaning of the VEMP results--although again, I think a lot of times even the biggest experts can't say for sure what such results do and don't mean--they just don't know enough about it, or it can vary across patients). Go for the vestibular rehab--it can't hurt and it can only help--it can be VERY successful when the vestibular damage is stable, i.e., due to an event that is over with, as it appears in your case. The VR therapists know how to evaluate a patient to find their specific vestibular weaknesses and design tailored exercises.

Best of luck,
Nancy

[lararobin]

Thank you for everything. I see the Vestibular Therapist on Thursday afternoon. I am very excited to see what she recommends after her initial examination and evaluation. She might have an opinion on the absent VEMP too. Then I have a follow-up with the Dr. on 4/28. I will definitely print out a few studies online and see what his exact thoughts are on my abnormal results.

My husband has had a ton of luck with Lexapro 10mg a day to help with his Meniere's disease. It makes him about "85% normal". Yes, we have a dizzy household. He was diagnosed about 2 years ago with a pressure problem in one ear. My neurologist suggested he try Lexapro when the Vestibular Therapy didn't help him. He felt an immediate improvement with Lexapro. Almost strangely fast! He feels dizzy if he misses even 1 dose now. Who knows, maybe it's psychological, but whatever works. I tried Lexapro and Xanax. Each for about a month or so... both helped with my anxiety (worrying over this unexpected out-of-nowhere dizziness), but didn't help or lessen my lightheadedness.

Thanks again for your encouraging words. I am hoping the therapy will help me!

Lara

[Nancy T]

Hi Lara. In the course of my longtime dizziness I've tried 3 anti-anxiety drugs--Xanax at the suggestion of my neurotologist (didn't help--made me feel like a rag doll), Ativan (made me dizzier), and Valium, of which I took one big dose before an MRI, and yup, it made me extra woozy too!

Stimulants and similar drugs help me--Provigil, Ritalin, and now Strattera. The ones that ramp up your attention, which allows me to think and focus instead of spending the day in a dizzy-foggy stupor. Glad your husband found something that works for him. It's not psychological, it's the correction of brain chemistry.

Let us know how the therapist and doctor visits go!

Nancy