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Old 05-03-2008, 01:59 PM   #1
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Bppv

Has anyone experienced BPPV that changes from canal to canal in one visit to the vestibular therapist? I originally had posterior canal BPPV right side. I was treated for that several times, the last time I was tested with the Dix-Hallpike (negative) then tested for horizontal canal and I was postive left side. The therapist treated that than when she retested I was positive for right horizontal canal. She treated that and was retested (all on the same day) and it turned into left cupulolithiasis. She is baffled and doesn't know how that's possible. Has anyone had experiences with this?

I'm going to see Dr John Carey at Johns Hopkins on Tuesday because my BPPV is so atypical and I have constant disequilibrium that the doctor and therapist are baffled.

I have been taking Klonopin and it has helped with my disequilibrium but not with vertigo.

Does anyone have experience with any of this?

Thanks
Susan

 
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Old 05-04-2008, 09:12 AM   #2
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Re: Bppv

That sounds like quite an adventure that you've been thru .... I'm really sorry to hear that you're having such a tough time. I have had several bouts of recurrent BPPV and at this point have had crystals in all three canals, so I know they can move around within the inner ear between canals. However, mine have all been on the same side. I know there are folks out there who do have bilateral BPPV .... which sounds like it might be the case for you?

Good luck with the dr. visit - I hope they can find some answers and relief for you.

 
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Old 05-04-2008, 09:00 PM   #3
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Re: Bppv

Sounds like you two (SSdizzy and ZsuZsa) should be my new dizzy friends!
ZsuZsa, stumping the doctors isn't what you wanted to hear, was it?

I have exactly this. Crystals all over that I feel like my head's a snow globe. First my horizontal, left with usual nystagmus (back and forth) for that canal, then unusual nystagmus (up and down). Then it moved to posterior, even worse feeling.

It always came back on my left side. I'd have to return to PT, they'd clear it. It would go and then come back.

During visits, they wouldn't find it on horizontal, it would show up on posterior, where I didn't have the problem, then show up on horizontal. It's like it took the other canal to trigger the problem canal.

The thing that helped me was a diuretic. It reduced the fluid in my inner ears, to allow the crystals to settle properly.

I still have more to go. So I'd be curious to find out what you're new findings are at John Hopkins. Please write in if you can. I've had this forever, and I'd love to hear about any other possibilities with this.

SSDizzy,
What has helped you? Were you able to get the crystals to clear all canals?


Snh39

 
Old 05-05-2008, 07:21 AM   #4
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Re: Bppv

snh--

Hi, there! I hope you are doing well today. Well, I know it can be irksome when folks try to push diagnoses on you, so please forgive me for bringing this up. I just thought it was worth mentioning just in case. I know we've talked about nystagmus being complicated to understand, but I believe I've read that nystagmus that changes directions (and especially nystagmus that goes up and down) are indicative of a central problem...maybe the whole migraine thing? If the other causes & treatments don't resolve things for you, I wonder if you should pursue that a bit. Also, your headache treatment (the hot/cold method) sounds like the way many folks treat their migraine headaches.

As you may recall, I'm also considering migraine but have been pursuing other possibilities like this severe sinus infection I have and the other tooth issues. I do think that we should rule out other possibilities before turning to migraine, as it involves rather an investment in the long-term treatment, etc., and in deciding on migraine we might be overlooking another treatable problem. Hopefully we'll get our answers (and the solutions!) very soon. It's too bad that dizziness can have so many causes, isn't it?

Anyway, good luck! I'm sure you'll get to the bottom of this very soon.

Your dizzy pal,
Violet

 
Old 05-05-2008, 02:24 PM   #5
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Re: Bppv

Thanks for your feedback Violet. My PT and ENT have ruled out MAV because they feel my TMJ is the cause for migraine type symptoms and the PT felt that the incorrect eye movement when testing for the horizontal canal was because it was in multiple canals. Because it changed and came and went, they didn't feel it was brain stem/central. If it were, it would be constant and not changing in pattern. Plus my MRI on brain, neck, and ear all came out normal....just some deterioration of the discs in my neck.

All that doesn't exactly rule out MAV. But if migraines are behind my vertigo, than I strongly believe that TMJ is behind my migraines. Oddly I think all my issues with the BPPV actually came from this as well. My ENT and PT disagree, but it seems that those are the things that have always triggered it, along with air pressure in planes.

I get concerned for people when I hear of all the drugs that are being used to "treat" migraine related illness. Because the migraine has to be coming from a cause. The drug is used in part, I think, to determine or rule out where the migraine is coming from. If it's brain related, this drug would determine that, if it's blood pressure related, that drug would work.

Problem is, they're not addressing the source; the actual brain issue, blood pressure, etc. What's causing the blood pressure issue? The problem, the source, needs to be found. Take blood pressure, it could be a falty heart valve, scary!...it could be hereditary, or maybe it's poor circulation which is coming from misalignment in the neck or spine, poor lung function, liver function, the list could go on.

Everyone on this chatline with potential MAV is on one to five different drugs. So much time is then wasted by trialing these. If they don't work you're back to zero, if they do work you still haven't found the cause, just alleviated the symptom. It'll be back or you take the drug forever.

I'm starting to think a chiropractor is not a bad idea for MAV sufferers vs. drugs. And perhaps a Cardiologist for some. I really think that doctors misdiagnose all the time, especially for symptoms that aren't life-threatening or resulting from a tested and true illness.

I really believe our symptoms are indicative of something else. And adressing the MAV isn't enough, we need to address the reason for it.

That's my theory anyway. I'm not disagreeing, I'm expounding on the topic really. I think when it becomes difficult to hang our hats on anything and we don't find anything on tests...it's time to unravel everything and work backwards.

Are you going in for a blood test, have you tried any MAV drugs, and when is your CT test?

Thanks Violet, sorry for the diatribe!

snh39

 
Old 05-05-2008, 05:09 PM   #6
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Re: Bppv

snh--

You raise some very interesting points here. It does make sense to me, and it is clear that much more research is needed on migraine. I also feel that many docs seem very limited in what they are able to perceive or speculate about...each one I've seen has given me their favorite diagnosis complete with drugs with little discussion or examination, then they charge the insurance company $500 for the five minutes they spent with me; meanwhile, I'm still sick. Insane!

I did get my CT scan, which revealed a severe sinus infection. It's located above my root canal tooth (I got a root canal in the tooth the day before I got dizzy). I'm on meds now and I'm praying that they clear up the infection and that this, in turn, will help my dizziness. I did have to request this scan after they told me I didn't have a sinus infection; I suspected I had one, and it looks like I've had it for five months! No wonder I've been exhausted.

Some people believe that lots of health problems are caused by tooth problems and dental work...perhaps TMJ falls into this category as well.

Anyway, keep up the quest and let me know how you do!

--Violet

 
Old 05-05-2008, 06:14 PM   #7
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Re: Bppv

Hi snh ....

In resposne to your question on what worked for me ... I have NO idea!! How's that for an answer?!!!

I had about 10 BPPV episodes within a year. (I also truly believe I had Labs or VN underlying the BPPV which compounded my problem.) I went through PT/VRT for several months which made a HUGE difference for the disequillibrium issue, but it was still always there and everytime I'd have another episode it would set me back a couple of weeks.

Everytime I'd go back to the neurotologist he just said it takes time. He said that just because they crystals had been moving frequently - doesn't mean it will continue to be that way. (That didn't really give me much comfort!)

I got to the point where the episodes were happening much more frequently (i.e. every 2-3 weeks.) Luckily, I could clear the crystals myself - which made a big difference.

My neurotologist had also recenlty gotten one of the automated "Epley Chairs" - so the next episode I had I figured I'd give that a try and maybe that would clear me once and for all. I got there .... she positioned me every which way, including upside down - NOTHING!! No nystagmus, no crystals moving, etc. I was so frustrated. But, in the days following that, I felt more solid on my feet than I had in a year. (who knows why ...) I had another BPPV episode 2 weeks later - I cleared it myself - and knock on wood - nothing since January.

I definitely continue to improve on a weekly basis - I still notice feeling "off" on days when I'm really active or when I fly or drive long distances - but, it's really just a nuisance - not debilitating like it used to be. For the most part, I really can tell I'm continuing to recover on a daily basis.

I hope you can find some relief soon. I know it's very frustrating ... and having something take YEARS to get better is no fun!! Even tho I feel MUCH better - I still get frustrated and angry that I even have to think about this junk 15 months later .....

Good Luck!!!

 
Old 05-05-2008, 08:27 PM   #8
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Re: Bppv

I am not sure where this idea originates that migraine has a physical "cause" behind it like a bad neck, TMJ or high blood pressure etc. There is no evidence for this at all unfortunately - trying to find high-level causes like this is just a way of trying to simplify things that are inherently very complex.

The cause of migraine is at the level of genes and cell function. It is influenced (i.e. revealed or triggered) by poor sleep cycles, diet, hormones, stress and a few other things. It is not a condition secondary to another medical condition, although you may be able to improve your symptoms by treating other conditions, you are still a migraineur and will be one for life. Whether you have symptoms or not will depend on your ability to avoid triggers and the effectiveness of drug treatments (some will be able to avoid symptoms without drugs, others wont).

You can't correct the root cause of migraine, and will likely not be able to do for a very long time. However, drug treatments should improve over the next decade.

Some faulty genes for MAV have already been located and the search continues for more. Once we can determine the dysfunction these genes cause (e.g. faulty ion channel pumps) we can develop better drugs to target the fault.

Gene replacement is not an option at the moment, but hopefully this technology will improve as well.

It is simply not correct that there is some other condition behind the emergence of migraine in an individual. This sort of thing sounds like it comes from sufferers trying to find physical, easy to identify causes (e.g. I got a migraine because I didn't drink enough water. Therefore a cause of migraine must be not drinking enough water).

It is no coincidence that migraine drugs are used in the treatment of TMJ. Jaw and tooth pain is a common accompaniment in MAV.

Last edited by amww; 05-05-2008 at 08:36 PM.

 
Old 05-05-2008, 11:41 PM   #9
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Re: Bppv

Quote:
Originally Posted by admw View Post
I am not sure where this idea originates that migraine has a physical "cause" behind it like a bad neck, TMJ or high blood pressure etc. There is no evidence for this at all unfortunately - trying to find high-level causes like this is just a way of trying to simplify things that are inherently very complex.

The cause of migraine is at the level of genes and cell function. It is influenced (i.e. revealed or triggered) by poor sleep cycles, diet, hormones, stress and a few other things. It is not a condition secondary to another medical condition, although you may be able to improve your symptoms by treating other conditions, you are still a migraineur and will be one for life. Whether you have symptoms or not will depend on your ability to avoid triggers and the effectiveness of drug treatments (some will be able to avoid symptoms without drugs, others wont).

You can't correct the root cause of migraine, and will likely not be able to do for a very long time. However, drug treatments should improve over the next decade.

Some faulty genes for MAV have already been located and the search continues for more. Once we can determine the dysfunction these genes cause (e.g. faulty ion channel pumps) we can develop better drugs to target the fault.

Gene replacement is not an option at the moment, but hopefully this technology will improve as well.

It is simply not correct that there is some other condition behind the emergence of migraine in an individual. This sort of thing sounds like it comes from sufferers trying to find physical, easy to identify causes (e.g. I got a migraine because I didn't drink enough water. Therefore a cause of migraine must be not drinking enough water).

It is no coincidence that migraine drugs are used in the treatment of TMJ. Jaw and tooth pain is a common accompaniment in MAV.


admw- so here's the confusing part...wouldn't you be able to control or alleviate migraine by alleviating the triggers or the influences as you mentioned, such as blood pressure issues, food allergy or food reaction, repeated postural issues, TMJ, etc., just as you would alleviate allergies by finding out what the trigger is that you're allergic to?

Or is it that a migraine is more almost like a disease or predisposition, like heart disease, high blood pressure, or other inherited type issues?

Because if the second is more the case with migraine, (that it's more of a predisposed issue), then it seems other problems such as TMJ, neck issues, etc. can cause migraine issues, but that doesn't mean you're predisposed to having migraines. In other words when you're other symptoms resolve, the migraines will too. And your saying, I think, that those people with MAV or migraine "predisposition", will have them more frequently and triggers are not just situational or due to another physical ailment....

Is that correct in what you're suggesting?

I'm clarifying because I don't want to throw myself into the MAV category (and my doctors may be more than willing to do so, if they can't find another reason for my symptoms) if I'm not correct about the issue of migraines.

Thanks admw for clarifying if you can. I don't want to steer anyone incorrectly.

snh39

 
Old 05-06-2008, 06:38 AM   #10
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Re: Bppv

snh--

I've read that everyone is capable of having migraines, just like everyone is capable of having seizures. It's just that some people have lower thresholds than others. Anything we can do to raise our threshold (reduce our triggers) will help our condition. So, if TMJ is a contributing factor it makes sense to me that fixing that problem would reduce migraine. Some things can't be as easily controlled, such as hormones and the weather.

--Violet

 
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Old 05-06-2008, 11:12 PM   #11
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Re: Bppv

Quote:
Originally Posted by snh39 View Post
admw- so here's the confusing part...wouldn't you be able to control or alleviate migraine by alleviating the triggers or the influences as you mentioned, such as blood pressure issues, food allergy or food reaction, repeated postural issues, TMJ, etc., just as you would alleviate allergies by finding out what the trigger is that you're allergic to?
Control is the keyword here. You still have migraine, you just don't have any symptoms. The condition is still there. I don't believe 'allergies' are a condition, they are a normal consequence of daily living that everyone experiences. I don't believe blood pressure, food allergies, postural issues or TMJ are common triggers of migraine at all and don't see the point of treating migraine from that perspective. The different drugs prescribed for migraine are not intended to treat an underlying condition (such as the blood pressure drugs - beta blockers and calcium channel blockers), they have an unknown mode of action in the brain that seems to prevent migraine.

Quote:
Or is it that a migraine is more almost like a disease or predisposition, like heart disease, high blood pressure, or other inherited type issues?
There are definitely genes that predispose people to migraine. It seems particularly the case that migraine is 'revealed' (i.e. symptoms start) after even a minor head injury, periods of stress, viral infections, hormonal changes etc. These things won't reveal migraine in everyone, only those that are predisposed through a combination of genetics and environment that is not yet fully understood.

Think of it like epilepsy. Just because you are not having a seizure right now does not mean you don't have epilepsy. Migraine and epilepsy are very similar conditions and may even arise from a similar mechanism (ion channel disturbances).

Quote:
then it seems other problems such as TMJ, neck issues, etc. can cause migraine issues, but that doesn't mean you're predisposed to having migraines. In other words when you're other symptoms resolve, the migraines will too. And your saying, I think, that those people with MAV or migraine "predisposition", will have them more frequently and triggers are not just situational or due to another physical ailment....
TMJ does not cause migraine and nor do neck issues. They might be just another trigger, but they are certainly not a cause or even a major trigger.. the major triggers are as previously described - irregular sleep, hormones, certain foods (these are not food allergies at all), emotional and physical stress, viral infections etc.

If you treat migraine, I believe the "TMJ" and neck issues, fatigue (and IBS which many migraineurs have) will get better because they are more likely to be migraine symptoms than independent conditions. Neck and jaw pain are definitely migraine symptoms. I have not had neck or jaw pain since starting treatment and these symptoms were very bothersome at times.

 
Old 05-06-2008, 11:49 PM   #12
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Re: Bppv

Quote:
Originally Posted by admw View Post
Control is the keyword here. You still have migraine, you just don't have any symptoms. The condition is still there. I don't believe 'allergies' are a condition, they are a normal consequence of daily living that everyone experiences. I don't believe blood pressure, food allergies, postural issues or TMJ are common triggers of migraine at all and don't see the point of treating migraine from that perspective. The different drugs prescribed for migraine are not intended to treat an underlying condition (such as the blood pressure drugs - beta blockers and calcium channel blockers), they have an unknown mode of action in the brain that seems to prevent migraine.



There are definitely genes that predispose people to migraine. It seems particularly the case that migraine is 'revealed' (i.e. symptoms start) after even a minor head injury, periods of stress, viral infections, hormonal changes etc. These things won't reveal migraine in everyone, only those that are predisposed through a combination of genetics and environment that is not yet fully understood.

Think of it like epilepsy. Just because you are not having a seizure right now does not mean you don't have epilepsy. Migraine and epilepsy are very similar conditions and may even arise from a similar mechanism (ion channel disturbances).



TMJ does not cause migraine and nor do neck issues. They might be just another trigger, but they are certainly not a cause or even a major trigger.. the major triggers are as previously described - irregular sleep, hormones, certain foods (these are not food allergies at all), emotional and physical stress, viral infections etc.

If you treat migraine, I believe the "TMJ" and neck issues, fatigue (and IBS which many migraineurs have) will get better because they are more likely to be migraine symptoms than independent conditions. Neck and jaw pain are definitely migraine symptoms. I have not had neck or jaw pain since starting treatment and these symptoms were very bothersome at times.

I have to say I disagree with this, regarding TMJ. In scenarios such as TMJ, cervical spine issues, disc problems...these are independent conditions and not necessarily symptoms of a migraine condition. You can have a migraine from these conditions and when they are dealt with, the migraine symptom, along with others, can be alleviated.

Thank you for the analogy of migraine with epilepsy. It helped to understand that migraine as a condition of its own, is a constant and not necessarily a side effect of some other condition.

If you have true TMJ though, a dysfuntion of the jaw joint; disc slipping out of joint, maliclusion, etc., or if you have a hernated disc in the cervical spine, this is a condition, not a symptom. In this case, migraine can be a symptom of the condition.

Sorry, the horse has been beating to death on this eh?

admw, I didn't mean to go back and forth, just trying to iron out what our doctors don't seem to be letting us in on.

much obliged for your input.

snh39

 
Old 05-06-2008, 11:53 PM   #13
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Re: Bppv

Quote:
Originally Posted by zsuzsa49 View Post
Has anyone experienced BPPV that changes from canal to canal in one visit to the vestibular therapist? I originally had posterior canal BPPV right side. I was treated for that several times, the last time I was tested with the Dix-Hallpike (negative) then tested for horizontal canal and I was postive left side. The therapist treated that than when she retested I was positive for right horizontal canal. She treated that and was retested (all on the same day) and it turned into left cupulolithiasis. She is baffled and doesn't know how that's possible. Has anyone had experiences with this?

I'm going to see Dr John Carey at Johns Hopkins on Tuesday because my BPPV is so atypical and I have constant disequilibrium that the doctor and therapist are baffled.

I have been taking Klonopin and it has helped with my disequilibrium but not with vertigo.

Does anyone have experience with any of this?

Thanks
Susan


ZsuZsa,
we've gotten off-track from your original conversation....how was your visit at John Hopkins today? Any new possibilities that would explain the crystals migrating from one canal to another?

snh39

 
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