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Old 12-07-2009, 10:06 AM   #1
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Perilymph Fistula

Hi I am new here. I have been undiagnosed for over 12 years, but may finally be on the verge of a diagnosis after seeing more Dr's than I can count. My symptoms are identical to ones I have read so many of you describe. Pressure, clogged feeling in ears, tinnitus, a sensation of fluid in the ears, difficulty focusing eyes, sometimes I feel blind though my vision is 20/20, just cannot process what I am seeing, constant pressure in head, especially back of head and neck, balance problems, cognitive problems, a spacy/surreal feeling all the time, fatigue etc. etc. The most recent Dr. I have seen (a neurootologist) suspects a perilymph fistula. He did a VEMP test and it came back very abnormal. He wants to do an ECOG next. Just wondering if anyone knows anything about this?



Thanks,
Naomi

Last edited by moderator2; 12-08-2009 at 09:37 AM. Reason: please post openly to all readers and do not title your posts to members by name

 
Old 12-07-2009, 02:18 PM   #2
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Re: Perilymph Fistula

Hi!
I just wanted to let you know you aren't alone. I was diagnosed with that in the beginning of the year. The problem is I'm on no treatment and am 0% better. I deal with the same symptoms you have described. I've had all the vestibular testing, but I don't remember which ones came back abnormal. I have problems remembering things.

I had so many vestibular testing I don't remember which is which, but the worst for me were the rotary chair, the one where they squirted water in the ear, and the ones where they put pressure in my ear. The other ones weren't so bad. It should be okay. What were you wondering about it?

I'm actually going to be retested for some things in the end of December. I'm going to see a new doctor for a second opinion and to see if I can find some treatment. Even when you are diagnosed, it's still hard to be treated. I hope I don't sound like a downer! I try to stay positive and believe my time will come to get better. Just like you. Just be strong and keep pushing til you find your answers.

Best of luck!

Stace

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Old 12-08-2009, 09:30 AM   #3
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Re: Perilymph Fistula

Stace:

So your symptoms are the same as mine and you were diagnosed with a perilymph fistula? Do you remember a specific event that may have triggered it? What did the Dr. say they would do about it? My Dr. said there is a surgery that can be tried. Yes, the problem seems to be there isn't any one diagnostic test that proves we have this -- so how do they know...

Naomi

Last edited by moderator2; 12-08-2009 at 09:38 AM.

 
Old 12-08-2009, 03:19 PM   #4
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Re: Perilymph Fistula

Hi All,

Perilymph Fistula is a very rare condition affecting less than 200,000 Americans. The symptoms described above are more likely a result of vestibular migraine, a common condition by comparison. Migraine is misdiagnosed 50% of the time. It is a complex neurological disease and as Professor Hain in Chicago puts it: "Migraine simply causes far more vertigo than any other condition".

Best ... Scott

 
Old 12-08-2009, 06:20 PM   #5
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Re: Perilymph Fistula

Naomi,

I just wrote a long message but I exited it somehow. I'll rewrite it later. But just so you know Studyin' is right. PLFs are rare and there's no EXACT testing they have for it to be sure you have one. I was diagnosed with it, but blew off the diagnosis. That's why I'm going to another doctor for a second opinion. I highly recommend not having a surgery until you have a second opinion because it's a rare condition and you have a chance of becoming deaf. There's a lot better options for you. Look up MAV, and that's the exact symptoms I deal with. See if you do too. It seems as if MAV is over diagnosed, but maybe there are a lot of people who have it. I've met a lot of people who suffer from it, and they seem to struggle with it for years. I've been dealing with it for 2 years with no relief.

 
Old 12-08-2009, 06:28 PM   #6
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Re: Perilymph Fistula

Hi Lucille,

I haven't seen any evidence supporting MAV being over-diagnosed. The exact opposite is true. It is misdiagnosed over and over again by specialists. And then they tell people they want to operate on the sinuses or worse, the ear itself. I wouldn't let anyone within 10 yeards of my ear with a scalpel. There's no turning back once that happens and it's mostly unnecessary. I highly recommend reading a book by Carolyn Bernstein called "The Migraine Brain". It's an enlightening read. It's truly tragic how many people suffer with this but have not a clue because of the medical establishment's lack of migraine knowledge. They just don't get enough teaching on the topic in med school.

Luckily, it's appearing much more frequently now in the science literature. The IHS will likely update their criteria soon too – to include vertigo within a migraine dx.

Scott

 
Old 12-09-2009, 12:54 AM   #7
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Re: Perilymph Fistula

Studyin,
Since my experience with doctors has been such a negative one, over the past 8 or so years of my life, I just have a problem trusting their judgment or say so. I've realized it's all called a "practice" for a reason. Thank you for the advice on the book, I have already bought the book "Heal Your Headache," but at this point I can't read at all. And if I force myself to I'm not really learning or remembering anyhow.

You seem like such a wonderful person. I've read a lot of your posts and you seem like you really want to help people and are so knowledgeable about this Vestibular information!

Might I ask you what you have been diagnosed with, if you have, if you're on treatment and if you got any better? I need hope! It's hard living with this at 21 years old. I want more than anything to get my degree, but as each day goes by it feels more out of reach due to this medical problem. I'll get it though if it takes me ten years.

I want more than anything to find a natural/healthy way to cure this. I'm trying to convince myself this is an opportunity rather than a hardship.

Anyhow, it's 3 in the am here, I'm exhausted, so it's hard to think. I should be sleeping.

Thanks so much for all the helpful advice you have given to me and everyone else!

Stace

Last edited by moderator2; 12-09-2009 at 05:04 PM. Reason: please do not use credentials on these message boards - peer sharing only, as per the posting policy

 
Old 12-09-2009, 10:18 AM   #8
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Re: Perilymph Fistula

I don't have vertigo-- it's more of a constant (debilitating) spacy feeling. I did try Topamax as one Dr. took a guess that it was migraine and had a terrible reaction. I actually ended up with a full migraine headache (aura and all) (and I have never had a migraine headache in my life) as a result of taking that drug. Also my symptoms are CONSTANT to varying degrees-- wouldn't migraine be more episodic? Thanks for all the info. Just trying to figure this out.

Naomi

 
Old 12-09-2009, 12:54 PM   #9
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Re: Perilymph Fistula

Naomi,
What you are describing is exactly what I deal with. My doctor diagnosed me with BPPV, PLF, and Vestibular Migraines. I blew off the PLF and have diagnosed myself with MAV/ Vestibular Migraines.

Oddly enough, you don't have to have vertigo or migraines to have MAV. I don' have migraines anymore, but I use to. I also have never suffered from vertigo, except for the positional vertigo I got from the BPPV. The thing with MAV is symptoms come and go and are constantly changing, and that's how it's been for me for the 8 or so years. This is if it's a true diagnosis. It just sounds like SO many people are diagnosed with it. But I picked up the book I bought "Heal Your Headache" again last night, and SO many things he describes about migraines sounds like EXACTLY the things I deal with.

Here are some of my symptoms, see if you can relate:
- Chronic fatigue
- 24/7 "off" feeling
- Disconnection from reality, space
- 24/7 Brain Fog
- Stuttering, problems communicating and socializing
- Numbness in extremities
- Poor circulation
- Panic attacks, extreme anxiety, especially after caffeine
- Extreme problems with memory, concentration, focusing, etc

The list goes on and on, but that's the jest of it.

Also, does the anxiety/ dizziness get worse on your period? It does for me! And most women who have MAV because hormones affect the dizziness.

 
Old 12-09-2009, 12:58 PM   #10
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Re: Perilymph Fistula

Oh, and I tried Topamax for 3 days. It made me more forgetful and dumb. They also call it "Dopamax." It also felt like my insides were being carved out. I would have dealt with the stomach pain if it would have made me feel better dizzy wise. But the added cognitive problems were not worth it. Since then, I have not tried anything else. I'm trying to get myself to take a med called Noritrypiline. It's supposedly helped ALOT of people who deal with the same symptoms you and I do. You should look it up if medicine is something you're considering. I'm just too scared to take it. And am trying to do things more naturally.

 
Old 12-09-2009, 04:14 PM   #11
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Re: Perilymph Fistula

Hi Stace,

>>> Might I ask you what you have been diagnosed with, if you have, if you're on treatment and if you got any better?

I've had migraine since I was a teenager but didn't know it. It showed in very subtle ways such as weird neck pains occasionally, dopey feeling in my eyes or abdominal pain for a day. In 2003, I got hit with vestibular neuritis. It was devastating stuff (all documented here). I went through a very acute 6-8 week period thereafter of chronic compensation and did feel better but I was not even remotely well and continued to have severe setbacks. Many things kept triggering attacks and I was chronically dizzy. What I didn't know was that my condition had morphed into MAV. Migraine was ramped up through the roof because VN was so damaging to my central nervous system. I suffered horrendous anxiety. In the end an SSRI called Cipramil (Celexa in the US) saved my neck. As it turns out SSRIs also clean up MAV symptoms for some migraineurs. And so I felt well again – about 95%. After quite some time I decided to come off the drug because I hated the side effects. Long story short, I've since been through about 15 meds none of which I can tolerate very well. I now manage this with lifestyle intervention and low-dose Paxil. In the new year, I'm swapping over to Lexapro and want to try Neurontin.

>>> I want more than anything to find a natural/healthy way to cure this.

It's great that you have this ambition but the reality is this: there is no cure. Migraine is a genetic neurological disease. The only way to solve this is by working out what sort of migraine you have as in the triggers. You need to create a lifestyle plan to manage your own migraine illness. If that is not sufficient then a medication of some sort will be needed. There are lots of people who have all but eliminated their symptoms on mvertigo. It can be done or at least reduced to the point of not having it be an issue in your life. The only "natural" remedies that have any efficacy against migraine are things like vit B2, B12, magnesium, and COQ10. I've been studying this stuff now for years and can tell you that none of the others work apart from helping with relaxation.

>>> [ edited by moderator ]

>>> Anyhow, it's 3 in the am here, I'm exhausted, so it's hard to think. I should be sleeping.

If you can, try and get your sleep in order. This is critical for someone with a migraine brain. Go to bed at exactly the same time *every* day and wake at the same time, hopefully after 7-8 hours sleep.

>>> Thanks so much for all the helpful advice you have given to me and everyone else!

Ask any time.

Scott

Last edited by moderator2; 12-09-2009 at 05:03 PM. Reason: please do not use credentials on these message boards - peer sharing only, as per the posting policy

 
Old 12-10-2009, 07:35 PM   #12
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Re: Perilymph Fistula

Scott,
I do know a good bit about MAV. I've just been telling people that's what I have when I try to explain it. I've been battling it for 2 years now. Thank you SO much for all the helpful information you have been giving to all of us. It helps to have some one around who knows what the heck is going on. I'm going on that site you told me about.

And I unfortunately know there is no "cure." It's something I'll have to live with. I have since I was little. So I know. It's pretty much a life sentence.

Thanks so much!
Stace

 
Old 12-11-2009, 01:09 AM   #13
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Re: Perilymph Fistula

Hi Stace,

Glad to help. There's a saying I hate bit it's true I'm afraid: "Once a migraineur, always a migraineur". It's always there lurking in the shadows ready to pounce if we give it the chance.

Chat soon ... Scott

 
Old 12-11-2009, 07:10 AM   #14
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Re: Perilymph Fistula

No offense but MAV seems like another waste basket diagnosis. There is no test for it(that I am aware of?) so unexplained dizziness, when no other cause can be found, is labeled MAV? And then you are supposed to go on antidepressants? Been there, done that with BAD results. I have all these abnormal vestibular test results and still cannot get a diagnosis? Why DO the tests if the results don't mean anything then!? And just because perilymph fistula is rare, doesn't mean that people don't get it. Not saying I have that -- but it is possible. This is a very frustrating situation. I have been sick for over 12 years, have seen countless Dr's and can come to no conclusion. Sounds like that is the path of most of us with inner ear disorders.

 
Old 12-11-2009, 04:24 PM   #15
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Re: Perilymph Fistula

Hi Naomi,

Very sorry to hear of your suffering with this dizziness garbage for so long now. It's a terrible problem I know.

>>> MAV seems like another waste basket diagnosis … there is no test for it (that I am aware) so unexplained dizziness, when no other cause can be found, is labeled MAV?

Although there is no objective laboratory diagnostic test for migraine the diagnosis can be reliably made in most cases based upon a very typical clinical presentation. Of course, the edges are blurry, and some patients overlap with tension or other types of headache; the disease is also associated with many other neurological symptoms (see the IHS diagnostic criteria) including vertigo and dizziness. Many NEVER even get a headache at all. Despite the lack of an objective test, there are documented physiological changes that occur during a migraine attack. Migraine is a complex neurological genetic disease that involves aspects of the central nervous system, neurotransmitters and other brain chemicals, electrical impulses, the body's inflammatory response, the trigeminal nerve (located in the face and head), and others. The physical reaction that begins the migraine attack is called "cortical spreading depression (CSD)". CSD is a dramatic wave of electrical excitation that spreads across the surface of the brain (the cerebral cortex) and is set off by a migraine trigger. Animal experiments show that CSD is a reality. Because the cerebral cortex is involved in language, thought, perception, and memory, it's often why a migraine attack trashes one or all of these causing cognitive problems. In MAV the hyperexcitability in the brain stem overlaps with the vestibular system and causes the dizziness.

Just like psychological conditions such as depression and anxiety, there are no solid biological markers, yet we know they exist. In fact, many diagnoses in medicine, like migraine, are based upon clinical criteria (symptoms) rather than objective biological markers. Furthermore the epidemilogy for migraine is overwhelming: roughly 10% of the population or about 30 million Americans are migraineurs. Of those, 75% are women. Of those, approximately 35% experience dizziness and/or vertigo. By statistics alone, it is HIGHLY likely that an undiagnosed case of vertigo that persists is migraine-based.

By contrast, while PLF is a real condition, it is extremely rare (< 200,000 cases in the US). You are more likely to be a migraineur by large orders of magnitude (0.06% versus 10% prevalence).

Another interesting bit – there is a genetic condition known as familial hemiplegic migraine which results in frequent severe migraines associated with stroke-like neurological deficits. The mutation is in a gene for a calcium channel, which is evidence that calcium regulation may play a role in migraine in some patients. Another aspect of migraine that is important to understand is that it is probably not one discrete entity but a collection of physiological entities that all lead to a final common pathway of trigeminovascular activation. Therefore, different patients with migraine may have significant physiological differences in terms of their triggers and which treatments they are likely to respond to.

>>> And then you are supposed to go on antidepressants? Been there, done that with BAD results.

As I mentioned in the last sentence above, there are many chemical problems in the brain that can result in migraine. No two migraineurs are alike and no two migraineurs will respond the exact same way to a particular treatment. Antidepressants are but one treatment pathway, and even within the antidepressant family, there are numerous meds to try, each with a different effect. I know many (including myself) who have had a lousy time on 5 or 6 different SSRIs but hit gold with another one such as Paxil or Cipramil. There's no easy way through this maze but you have to explore all possible med treatments, sometimes in combination to stop your particular migraine pattern. Lifestyle intervention is also critical. Meds are NOT a substitute for putting a lifestyle management plan in place.

I don't know your particular case and can't obviously say that migraine is the root cause of your dizziness but it's definitely one to be taken very seriously given the common nature and prevalence of migraine.

Cheers … Scott

Last edited by studyin; 12-11-2009 at 04:51 PM.

 
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