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alexisc 10-19-2011 09:04 PM

Labrythitis, Menieres, BPPV?
Hey everyone,

I'm just looking for some insight into symptoms I have been having and wondering if others have experienced the same.

About 4 weeks ago out of nowhere I experienced:
-Dizziness (but not true vertigo)
-Brain fog, speech problems
-Anxiety attacks, rapid heartbeat
-Neck stiffness
-Balance issues.

I went to the hospital twice without them finding a reason but later visited my doctor who told me I most likely had BPPV. However after a few days of these symptoms they went away but I started experiencing:
-Pain in both ears (so bad it brought me to tears)
-Pressure in both ears
-Vomiting and diarrhea
-and after these symptoms the feeling of water in both ears.

After a week these symptoms went away and after regaining my balance I felt fine. Now four weeks later I was listening to loud music in my headphones the other day (so stupid I know, never again!) and my symptoms have returned. First all of the dizziness, anxiety and disassociation (although less than last time) and now moving on to the pain and pressure and feeling of fluid in both ears. I am not sick this time either.

I'm just wondering if this was labyrinths that was healing and I've disturbed it with my loud music, if it is BPPV (although both of these say they only occur in one ear?) or Meniers disease? I am also female and both of these attacks have happened when it is that time of the month. Caffeine definitely makes the symptoms worse.

I would be really grateful if anyone could tell me if they have experienced similar symptoms and what they believe could be going on! Thank you so much, I'm just trying to get to the bottom of this. My doctor says it will not happen again but I don't think he knows what is going on either.


bindar 10-20-2011 08:18 PM

Re: Labrythitis, Menieres, BPPV?
Labyrinthitis or BPPV seem extremely unlikely given your symptoms.

Menieres is possible, but it has actual spinning vertigo and hearing loss, neither of which you mentioned.

Migraine is the most likely cause, there is something called Migraine Associated Dizziness (or vertigo). The onset of symptoms during menstrual period plus headache is the most obvious indicator. I have read at least 150 confirmed cases of MAV, and those people experienced exactly every symptom you describe. A neurologist is the best person to see for treatment. The treatment consists of migraine preventative medications (not Triptans) plus diet and lifestyle modifications.

alexisc 10-20-2011 10:55 PM

Re: Labrythitis, Menieres, BPPV?
Thank you for taking the time to give me your opinion, I really appreciate it! This whole experience has been really scary and I have a lot of respect for people dealing with any vestibular problems. It's hard because all of these weird things are going on inside but other people find it difficult to understand because there are no outward symptoms. (Other than stumbling around when dizzy and having panic attacks.)

I'm just wondering a few things... with MAV is it also common to have trouble focusing with the eyes while the dizziness is happening? I think it is called nystagmus. This was one symptom I forgot to mention as well. It could possibly be Meniers because I have mild tinnitus but it's so mild I don't really notice it. I haven't had any hearing loss but when I get an attack I am extremely sensitive to sound afterwards for the first day.

I just find it so odd that a migraine could affect the ears so drastically but it does make sense. At the moment it feels like I have ton of water seeping out of my ears which the doctor confirmed I don't. It feels like the right ear is more affected than the left, all though both hurt and have pressure and the fluid feeling at the moment. I had a minor attack again yesterday but no headache but I read that is common with MAV. The dizziness comes in intervals for 60 seconds and then goes away or sometimes comes back again. The first attack I was dizzy off and on for two days!

With MAV is it something that comes and goes for most people or does it happen to them most all of their life? Because this has only happened three times do you think I should wait and see if my symptoms come back next month or should I see a neurologist right away?

Sorry for all of my questions and thank you so much for your help again.

bindar 10-22-2011 12:13 AM

Re: Labrythitis, Menieres, BPPV?
Many MAV patients complain of trouble focusing eyes when they are symptomatic. Nystagmus is fairly common. Mild tinnitus is common in MAV. Sound sensitivity is a characteristic of migraine, and MAV.

Meneires has strong tinnitus, you would know if you had this. The dizziness associated with meneires lasts several hours or even days, it does not fluctuate every 60 seconds the way you describe.

Migraine is more than a headache disorder, it can manifest itself in many different ways. Research shows that 35% of migraine headache patients also experience vestibular symptoms. It is believed that the disorder is linked to a chemical imbalance in the brain and/or brainstem.

The good news is that MAV (and every other presentation of migraine) can be controlled in the vast majority of patients. Diet and lifestyle modifications are the easiest way to control symptoms, this alone is sufficient for about 20-40% of people (depending on the researcher's statistics). Most people require a migraine preventative medication. The three most common meds are Nortriptyline, Topamax and Verapamil. You should talk to a doctor about a diagnosis and treatment plan. The treatment for MAV is exactly the same as for migraine headache, except you dont use migraine abortives.

bindar 10-22-2011 12:18 AM

Re: Labrythitis, Menieres, BPPV?
Oh I forgot to say something, I know how you feel, dizziness can be scary. Im close to your age (24) and I had an ear injury (perilymph fistula) a few years that has given me chronic imbalance, motion intolerance, and straining induced vertigo. I am having surgery to fix it next month, luckily it is easily curable. But I have had every test, seen many doctors, etc... I have spend countless hours researching and reading other peoples experiences. One women helped me find my diagnosis on another forum, otherwise I wouldnt have figured out what was wrong with me. My ENT specialists were useless, so I saw an Otologist who agreed with my suspicion of perilymph fistula.

lovineachday 10-22-2011 11:00 AM

Re: Labrythitis, Menieres, BPPV?
Bindar, I'm curious as to why the treatment plan for MAV includes not using triptans?

I was diagnosed with VN but also get quite a few migraines. At the beginning, I wondered if it was MAV. It was discovered that I have damage in one ear, and I guess for that reason (and maybe some others) he ruled out MAV. Anyway, I take triptans regularly, and just want to rule out anything else going on with me a year and a half later (MAV, BPpV). We all know we have to be our own advocates for our health! ;)

alexisc 10-22-2011 02:08 PM

Re: Labrythitis, Menieres, BPPV?
It is good to hear that your ear injury can be cured with surgery! And even better that it is next month. Chronic imbalance and vertigo would be exhausting, this has been happening to you for years? I'm so sorry to hear that but glad they have finally found the culprit of it all. I'm not sure why doctors are so clueless when it comes to inner ear issues, almost everyone I have talked to about this knows someone who has had some form of vestibular problem.

After researching myself I agree with your thoughts of having MAV. I had excruciating migraines (before all of this I thought they were headaches) on and off all of yesterday and the only thing that helps is taking diazepam and laying down in a dark room. Tylenol barely touches the pain. I have been getting migranes at least monthly for the last year so the history is there. My triggers so far are hormonal imbalance, caffeine, low-blood sugar, msg and the weather. I noticed yesterday when the weather started clearing up I felt better, only to feel worse when the rain started again.

I am seeing my doctor on Monday and asking to be sent to a neurologist (although I've read they usually don't find anything with testing, but they are the most knowledgeable about this condition) and also an ENT to eliminate any other possibilities. I really hope by doing the migraine diet I can stop these horrible attacks and if the diet doesn't work to find medication that does.

Thank you again for your help, you have a lot of knowledge when it comes to inner ear issues! I guess the best thing to do is educate yourself on what is happening and why. I hope that you are feeling less dizzy and hopeful for your surgery. :)


alexisc 10-24-2011 10:47 AM

Re: Labrythitis, Menieres, BPPV?
I went to see my doctor today and he restored my faith in him. I told him all of the symptoms I have been having and how they are still going on and he came to his own conclusion that he thinks this is MAV. I was happy that he told me what he thought before I told him my own opinion on what this might be. He is setting me up for a CT scan as well as an appointment with a neurologist. At first he was thinking of sending me to an ENT but quickly changed him mind when I told him I had no ringing in the ears and didn't think it was Menieres.

The one thing he found surprising is that I have such crazy pain inside my ears, he had never heard of this before with MAV. Has anyone else been diagnosed with MAV and gets extreme pain, pressure, fullness and the feeling of water in their ears? I'd be interested to know if there are others out there.


bindar 10-24-2011 03:35 PM

Re: Labrythitis, Menieres, BPPV?
[QUOTE=lovineachday;4866029]Bindar, I'm curious as to why the treatment plan for MAV includes not using triptans?

I was diagnosed with VN but also get quite a few migraines. At the beginning, I wondered if it was MAV. It was discovered that I have damage in one ear, and I guess for that reason (and maybe some others) he ruled out MAV. Anyway, I take triptans regularly, and just want to rule out anything else going on with me a year and a half later (MAV, BPpV). We all know we have to be our own advocates for our health! ;)[/QUOTE]

Many journal articles state that triptans can either make MAV worse.

Vestibular deficit is not uncommon in MAV. Its possible that this is caused by an actual injury, or MAV.

studyin 10-26-2011 05:15 AM

Re: Labrythitis, Menieres, BPPV?
Bindar is spot on. Yours sounds like a textbook case of migrainous vertigo. Do a search for the MAV Survival Guide to learn how you can rein this thing in. It's completely treatable.

Triptans don't work for MAV.

Best Scott. :cool:

alexisc 10-26-2011 09:10 PM

Re: Labrythitis, Menieres, BPPV?
I read the survival guide and it was really informative. Are you the Scott that wrote it? If so THANK YOU so much for your time and dedication to helping others. I've been doing a lot of research into MAV and am glad it is at least treatable with effort and time. I am most sad about not being able to drink coffee or anything with caffeine but it's a small price to pay to not have pain, dizziness and anxiety about it all.

The one thing I read that concerns me is to not take any painkillers especially opiates. I understand the concept of a re-bound headache, but what about for extreme (I mean SO PAINFUL) ear pain? At times during this whole ordeal I have felt like my ears were going to explode. Not that what I was taking was really helping (it was OTC Tylenol), but is there anything that will? I will talk to my neurologist about this when I get my appointment but does anyone know what I can take to combat this? Prescription or OTC? Throughout the past month I have been taking a lot of Tylenol (not good for the stomach either especially when not being able to eat much) but have stopped now that I read this.

Thank you for everyone's help through all of this. It's definitely a challenging thing to have to deal with but I'm really trying to stay positive. I am not good when it comes to being sick or dealing with medical things and tend to get really emotional and assume the worst. I think my Mom and boyfriend are ready to kill me but I just try to remember it could always be worse. My thoughts go out to everyone dealing with any vestibular ailment, hope you are having a day where you are feeling better. :)

alexisc 12-20-2011 11:50 AM

Re: Labrythitis, Menieres, BPPV?
Hello Everyone,

I just wanted to quickly update this thread because I hope someone else might be helped by it if they have had similar symptoms.

I just had my first appointment with the neurologist and have been diagnosed with Migraine (or Migraine Associated Dizziness). I am starting on 10mg Nortriptyline at night for three months and will go from there. She said I was a classic migraine case and that medication should definitely help. Usually her first line of medication is a beta blocker or calcium channel blocker but because I have low blood pressure and a family history of depression she opted for a tricyclic antidepressant. There is another one to try is Nortriptyline does not work for me and if that doesn't work she would like me to try botox injections. Relpax (a triptan) has also helped significantly with the pain I felt both in my ear and in my head so I do not fear these attacks anymore.

I would like to send a HUGE THANK YOU to Bindar for giving me your opinion that you thought I had migraine right from the beginning. Without your help I might be waiting endlessly seeing ENT's with no hope of a diagnosis. Thank you for being so helpful on these boards, you have no idea how much time and agony you saved me by pointing me in the right direction when this all began.

Let's hope the Nortriptyline does the job! :)

luisita 12-21-2011 11:00 AM

Re: Labrythitis, Menieres, BPPV?

I have started on amitripytline 10mg per night which is more or less the same, have you noticed any side effects? I have only been taking it 7 days up to now. Do you have to up the dose?


alexisc 12-21-2011 03:34 PM

Re: Labrythitis, Menieres, BPPV?
I haven't started the nortriptyline yet Louise I am starting tonight but they are very similar so I will let you know. The side affects I have heard of are dry mouth, sedation or restlessness and strange dreams. Not too bad compared to a lot of the other migraine mess out there. Hope it works well for you.

bindar 12-21-2011 06:46 PM

Re: Labrythitis, Menieres, BPPV?
I am thrilled to hear that I was able to steer you in the right direction! Nortriptyline is an excellent medication for suppressing migraine. It is generally well tolerated, and a good choice given your family history or depression.

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