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BPPV stuggler on the Road to getting better???

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Old 04-29-2008, 08:17 PM   #1
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snh39 HB User
Talking BPPV stuggler on the Road to getting better???

Just an update here after some tests, PT and seeing the ENT....

First off, I've been on a diuretic for a month and a half to reduce fluid in my inner ear so that crystals can settle or clear where they need to (BPPV).

I think it must be working because I only went in once in the last few weeks to the vestibular PT because of the spins after laying on my left side, the side of my positional vertigo. Also, I believe with BPPV, letting it settle for a few weeks really helps after PT. I was told not to do at home manuevers because there's no way of telling what canal the crystals are in so that I do the correct manuever.

I've found after not having to deal with the spinning as much, that my main cause of problems isn't BPPV, but my neck and my TMJ....just like I originally thought ($2,300 in-specialists-and-health-insurance later). The BPPV just needed to clear, and it caused a lot of problems and major set-back, but it's not the main issue I don't believe.

The PT found the motherload of all crystals in my posterior canal during an Epley. She cleared it, I have had some residual dizziness but not too bad.

So for the last few weeks I've only had the spins for a couple of reasons, otherwise I just have dysequilibrium, foggy and bouncing vision mostly when I walk and unsteadiness (it sounds bad, but in comparison to the world spinning every time I moved my head, I'll take the constant sense of unbalance).

The spins I did have were from...wearing a splint for TMJ, which was less like spins and more like constant dizziness...another during an MRI test, which vibrated my BPPV into a short jolt and then a feeling of being rocked to the beat of the MRI vibration (barf!)...and lastly, I had a spin when I leaned forward to pick up a heavy container of water (that one lasted all day, every time I moved my head (whether it triggered BPPV or if it was my neck and head pressure, I don't really know).

The MRI was for my inner ear, it was normal. I also had a fistula test because of fluid leaking from my right was normal (no perilymph fistula).

I saw my PT yesterday, she checked me for BPPV...I didn't have any spins, no nystagus. We concluded my BPPV is on it's way out finally (Knock on wood) and that my current dysequilibrium is caused by cervogenic (neck) dizziness in combination with my TMJ issues (which are also causing Migraine related fogginess, dizziness and pain).

My ENT agreed and has me taking a sinus spray to open up sinuses and hopefully relieve the middle ear pressure and reduce fluid. He said that because I have TMJ and neck issues, the migraine type stuff is more related to that and most likely once I can get a handle on that, my migraine type symptoms will go away (nausea, difficulty reading, eyes hurting, head pressure and pain, headaches).

My plan of action now:
- Hope and hope that the debilitating BPPV doesn't return or that they missed something with this or my middle ear diagnosis....

- see another PT who strictly handles vestibular issues with the neck and jaw (cervogenical vertigo) along side my original BPPV PT....

- then check into a naturopathic chiropractor after the dizziness is handled, who can assess the whole body mess that I'm dealing with (alignment, TMJ, muscle, gait, bloodwork and internal organ analysis, allergy, etc)....

- go in for cranial sacral work pre-TMJ treatment....

- and then once I relieve the pain and spasm in my neck and jaw muscles, then tackle the tmj with splint therapy.

And if it all comes back, well then I'll consider shooting myself after I pay all my health bills.

I wish you all well....snh39

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Old 04-30-2008, 05:49 AM   #2
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violet6 HB Userviolet6 HB User
Re: BPPV stuggler on the Road to getting better???


I am so glad to hear that you are feeling a bit better and seem to be getting closer to answers. It's very complicated when different problems interact together, isn't it? Keep us posted on how you do!


Old 04-30-2008, 12:00 PM   #3
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snh39 HB User
Re: BPPV stuggler on the Road to getting better???

Originally Posted by violet6 View Post

I am so glad to hear that you are feeling a bit better and seem to be getting closer to answers. It's very complicated when different problems interact together, isn't it? Keep us posted on how you do!


Thanks Violet, I hope you're hanging in there and doing better. Have you had any luck with the things you were checking into or any more tests being done?


Old 04-30-2008, 01:38 PM   #4
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violet6 HB Userviolet6 HB User
Re: BPPV stuggler on the Road to getting better???


Well, not really. I guess I feel a bit less dizzy and a bit more "energetic." I'm actually going to get a CT scan this week to see if my sinuses are involved with this at all (possibly related to my root canal, which can sometimes lead to sinus infection and thus dizziness). Not sure if this will show anything, but thought I should consider the possibility. If not that, then I'm off to see a new headache specialist to see if all my symptoms can be explained by migraine. If so, I might start on some meds eventually. I still keep hoping it'll pass on its own...I do think it's odd no one has performed many tests throughout all this--I've had no blood tests, for example. So bizarre!

Thank you for asking!

Have a wonderful day,

Old 05-03-2008, 10:42 AM   #5
Join Date: Feb 2008
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Boslee2008 HB User
Re: BPPV stuggler on the Road to getting better???

I'm very curious. How did your PT come to the conclusion that you are having "cervical vertigo". I'm not saying this is not the case for you, not in the least, but I know that it is not easy to diagnose because of other conditions that affect the neck. Migraine can cause neck stiffness 24/7 as well as problems isolated to the neck. usually, cervical vertigo is caused by a disk abutting the spinal chord at C1-C2, or C5, C6. If you get an MRI of your spine, you can probably rule that as the cause or rule it out. It's very hard to make a diagnosis of cervical vertigo all by itself, unless your PT has some very good skills. I'm VERY curious how he/she came to that conclusion. Thanks :-)


Old 05-03-2008, 02:38 PM   #6
Join Date: Jun 2005
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sponge70 HB User
Re: BPPV stuggler on the Road to getting better???

has anyone gone to a neruo chiroprctor. i just started going to one. have'nt had any treatments yet. will start this week. i am having a problem with balance and dizziness. let you know if he helps me.

Old 05-04-2008, 07:42 PM   #7
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snh39 HB User
Re: BPPV stuggler on the Road to getting better???

The PT reviewed my MRI report of my neck and does think that some of my issue could be disc related. I have degenration of C6 and slight loss in some of the other discs also. How it's relating to my dizziness is still undecided. He didn't see any reaction to his tests for Cervogenic dizziness, but we're also not seeing as much of the BPPV either so it doesn't fully explain why I'm still dizzy.

My hunch is that I've been suffering from a few layers of dizziness; BPPV or spinning, positional (or "come to Jesus" dizziness, as I like to refer to it, because it feels more like a stroke), dysequilibrium (or mal de debarquement) which could either be residual BPPV and brain/ear recalibrating or neck stuff, and lastly eye movement type dizziness. The eye movement stuff is kind of a spacy, can't focus and not so much as nystagmus. That I think is directly related to my TMJ.

The TMJ dizziness usually comes on in the morning when I wake up (clenching at night), and after I eat as well as later in the evening. At about 6pm or so, my neck and jaw and headaches are continuous as well as the dysequilibrium.

I think the TMJ and BPPV (combined with residual stuff from the past like car and biking accidents to my neck), is what has brought on the neck problems.

What I'm trying now to work out with the PT is can cervogenic dizziness come and go or be symptomatic. Because that would explain the tie-in with BPPV and TMJ and why when these are at their worst, so is my neck. (I've been tested for cervogenic dizziness prior to this, during the time of my worst dizzy spells, and the PT's felt I did have it. So it could just be episodic with my other issues).

We'll see. Wednesday I see my vestibular PT and the week after, the cervogenic PT.

All in all, I think the thing that's helped the most with the BPPV dizzy component is the diuretic. And time, just letting it settle into place again.
Reducing anxiety and relieving muscle spasms in my neck, jaw and head is key also to recovering from all of this. When you have multiple things going on, I really feel that an accurate diagnosis is close to impossible unless you're issue is red flagged on a test, because it's so difficult to weed through all the symptoms to find the main cause. Once you can diminish some of them, you can see the real picture more clearly. For example, if you have dizziness, it most likely will cause neck pain or head pain, which you believe to be a cause of the dizziness when really it's an effect of it. So you have to undo the layers to find the real cause.

Just to ramble on a bit more...maybe my experience with this can help anyone....

I had to calm the anxiety. To do that I needed to sleep. To sleep I needed to relieve pain. I did that by taking drugs. Not lots, and not often but when I needed it I took them:
- Valium (big help, it either reduces dizziness or makes you so out of it you don't care if you are),
- Lorazepam (not to be taken with Valium, nothing that makes you sleepy should be taken with Valium) for anxiety,
- Benedryl sometimes helped, with sleep, with reducing pressure in my ear/head,
- Humidifier; where I live, Colorado is like the desert and drying your sinuses doesn't help your sinuses it only makes them irritated and sore and SWELL. A humidifier keeps that all from happening.
- Meclyzine, at first. The more often I took it, the less it helped me. And it made things worse when it wore off.
- I tried to keep going to PT to help with pain in my neck and head. Keeping these muscles from spasming made a huge difference.
- Hot packs/cold packs; cold on my neck, head, and back, warm on my jaw.
-Hot bath water in the tub just past your ankles and cold water over your head with the shower, draws the blood away from a pounding headache too.

Once that feeling of being in a car accident started to subside, I could concentrate on the dizziness and get more treatment for that with PT and Epley's, Hallpike's etc.

Then I took the diruetic. I went in to PT only when I had major spins, so that they could clear it. (I stopped doing any of that at home because I found I couldn't tell which canal the crystals were in and I wasn't doing the right manuever, which made it worse). Then I just needed time for the diruetic to work and time to let everything settle.

Now things are just (after 8 months) starting to feel better. I still have some dizziness, but no major spins (knock on wood). After the pain and BPPV subsided, now I'm tackling the deeper issues; TMJ/neck related issues and possible middle ear. I'm taking an nasal spray to help clear the middle ear.

Important things I've learned:
The diruetic took more than a month and a half to work or feel the positive effects.

All the drugs listed above I only took to sleep when I needed it or when I was having a particular difficult day, or during a PT visit so that I wouldn't freak during a spin session.

The drugs I listed WILL NOT help in the long term. Once their effects wear off, the dizziness and pain can come back harder. That's why I never took any of them more than one or two days in a row. Your body gets used to them and than Wham!!, you're in it all over again. Plus it differs the recalibration your brain and inner ear need to make, in order to get back to normal. Recalibration exercises for instance, ON DRUGS, won't work. Your brain has to work against the effects of the drugs, so not taking much of them is the key to getting your balance back. They're good for the onset, not good for the long term.

Same thing with the nasal spray. I've been told that just taking it a few times, doesn't help. I'll be on the nasal spray for 3 months, the diruetic for 3.

I'm not quite there yet. I'd say I'm at about 60% feeling normal. But unraveling all the layers of this is what has finally helped me a bit. As well as acceptance and patience and controlling my anxiety.

In the last year I've gone to 3 clinics from being fearful of what's happening, how I'm reacting to meds, or the spins. I've also gone to the hospital once, and been taken by ambulance from a reaction to the diuretic. Anxiety. I could have just been patient and deal with it on my own at home, and saved literally over a thousand dollars in co-pays.

Dizziness, the meds you take, and how you're body reacts to all of it, takes a long time to get used to. The best thing NOT to do, is freak out. If you can do that, however you do it, it will save you months of agony and help you not only deal with all your symptoms, but help to acknowledge what the issues are and where they're coming from, what they're related to.

Wow, that was my longest yet. Sorry, my mind doesn't speak BRIEF.
I do hope some of this can help others.


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