Ongoing research study at DUKE re: Dizziness & Vertigo for RHS & MM folks

Wendy and I, or Dr. Kaylie or Dr. Gray. We are willing to help.

 

My doctors are at Vanderbilt I'll have to take this to them... thanks

 

Wylee/Wendy,

What kinds of meds are you taking to control the fluid level besides diuretics? Have the doctors determined the cause of the increased fluid levels? I have been on diuretics for six months. I personally don't find them to be very effective and have my doubts whether they address any root cause.

I believe that Dr. Gray/Kaylie's treatments would help relieve my symptoms as well, but I also believe the underlying cause in my case is a viral infection. So I have been trying several treatments over time to attack it from that angle. I started with acyclovir, which helped a lot in the beginning but then I stopped after two weeks and suffered a relapse shortly thereafter. Going back on it along with JOH did not help as much until recently when I added two more things to my regimen; Vitamin C megadosing and switching from acyclovir to famvir. I started Vitamin C two weeks ago and famvir 5 days ago. I am not quite 100% yet, but I've had my best week in 2-3 months now. I believe it is all about finding the right things to control the virus. We all know how stubbornly persistent it can be, but we can win the battle with our own patience and persistence!

For the record I have also gone down the NUCCA route and believe that has helped as well. With all the things I am doing I certainly can't prove in a scientific way what is helping me, but at this point I really don't care as long as I am getting relief. Getting my quality of life back is my number one priority at this time. I can always pare down some of my treatments over time to determine which ones really helped. It is not a simple disease to treat and sometimes a multi-pronged approach is necessary.

Thank you so much for sharing your stories. I'll be keeping an eye on this study and possibly participating in this myself someday if my other treatments don't provide complete relief.

Dan

 

Bump.

Wylee and Wendy,

How are you doing so far on this treatment? Hopefully no news means good news!

Thanks,
Dan

 

Wendy has been symptom free since her patch job. She is busy making up for lost time: planting a garden, driving her new to her VW convertible, cleaning her house, and getting ready to hopefully take on a foster child. She is doing extremely well.
I have had my usual set back, the meds aren't keeping ahead of the CSF production, so, not feeling as well as I could, but did not backslide all the way down the hill. Thanks for asking though.

 

Glad to hear that Wendy is doing so well. That is the goal for each of us here!

Sorry to hear about your setback. Do the doctors know what is causing the excess CSF production? I was wondering, do they run tests on samples of your CSF for potential pathogens that could be causing this? Just asking because I feel I may have excess CSF as well. It seems to cause swelling of the meninges with MAV symptoms. I have pressure in my forehead, ears, and back of the neck. It is always there to some degree, usually less in the morning and progressively worse as the day goes on unless I stop everything I am doing to lie down and rest. I am able to gut my way through my daily routine at the times when the pressure is lower, but dizziness becomes more of a problem as the pressure increases later in the day. It appears that the more mental work I try to do (on the computer, listening/speaking at meetings, etc.), the quicker I wear down and the pressure increases and dizziness and brain fog kicks up. The last couple of days were challenging since I had to be in a training class all day. Yesterday, I only made it to lunch time before my symptoms forced me to go home and rest. Today, I lasted a bit longer into the afternoon, but again had to cut out of the class early. Frustrating!

Anyone else here have similar symptoms? If so, what was helped you?

 

Hi Dan,
Thanks for the concern, but I am learning that my system gets used to medication fairly easily. We just keep trying different meds and doses hoping we can find the correct dose. Even when we do I'll have to have a back up to switch off to. Oh well, it's better than ALL of my symptoms coming back!!
From what the Docs have told me, it isn't that our bodies are producing additional CSF, it's that there is an issue with the re-absorbtion rate. We will find out for sure when I have the lumbar drain test in June, we'll have actual numbers from the 3 day test.
If you feel better in the morning, and then feel better late in the day after laying down, you may have LOW CSF pressure.
That is what Wendy (has) had. That fluid you speak of could be where some of your CSF is going. Just a thought. For me, I hate waking up in the morning because I know my head it going to feel like a ton of bricks. After I get up I start to feel better. As I take the diuretics during the day I start to feel better.
If you do decide to go to DUKE, I highly recommend setting up an appointment for the first Monday you will be in town to see Dr. Kaylie. They possibly could squeeze you in to do a LP and then you would know for sure if this would work for you. I hope you get to give it a try, and I hope it works.
Had another success story of a fellow RHS'er. Her opening pressure was 19, but when Dr. Gray dropped it, her headache went away and her blurry vision did too. She's joined the Diamox takers group now and is thrilled to do it. She has already referred a friend of hers that has Lyme.

 

This truly amazing, I have been following Wendy's private blog and this lady/girl has had bilateral mm for a very long time, she was basically bedridden, deaf and at the end of her rope in life. After these treatments she is now hearing again, driving for the first time in years and even adopting a foster child now with her husband. This is amazing.

Maybe we don't hear a lot of stuff, but it is refreshing to know that doctors are workin around the clock to solve vestibular disorders and mm.

Technology is moving ahead on all fronts both medical and device wise. Doctors in Europe plan on inserting the first full time vestibular implant in a person this year to restore balance.
Maybe just maybe in the comin years we will see the answer whether it is medical or technology.

 

I am with you BD... the hope is alive.

 

Hi Wylee,

I do not see that I asked about your pain level. I asked:

I am reading and reading, but I have not read yet the answer to my question. If you have answered, please direct me to your response. Thanks, Wylee, very much.

 

This is a very interesting subject matter. There is much I do not know, and much that the doctors at Duke are learning. But I believe that there is good information to be understood in the field of cerebral spinal fluid flow, information that can possibly positively affect folks who suffer from Meniere’s symptoms.

Suspecting a cause and effect relationship between the condition of the spine and proper CSF flow, I went searching for information that dealt with chiropractic influences that could possibly affect either the hypo- or hyper-tensive conditions of the CSF.

And what I have found, I believe, is very interesting. First of all, there are two chiropractic researchers, Vincent and Carmine Esposito, who together have formulated quite a volume of information on the subject of cerebral spinal flow. Here is a write up on Vincent Esposito, which speaks to the brother’s research, which utilizes MRI technology to document changes in the flow of CFS from the cranium to the sacrum in real time.

http://www.dynamicchiropractic.com/mpacms/dc/article.php?id=40070

Furthermore, there turns out to be a research organization that devotes its entire research into this area of CFS and all of the various symptoms and conditions that affect it’s flow and proper functioning of the system. This not for profit organization is the Sacro Occipital Research Society International (SORSI). Here is their website

http://www.sorsi.com/home

Now here is some information that I believe should be very interesting for Wylee. Here are two videos created by the Esposito brothers demonstrating their research. These videos are actually pretty old. They were created using MRI technology. The subjects in the videos both had hypertensive CFS. The before videos show that CFS was essentially blocked from flowing down the spine. The after videos show certain new space available within the dura of the brain and spinal cord, pulsing as CFS is pumped throughout the CFS system that extends from the brain cavity and down spinal cord. Even though these videos are old, the differences are easy to identify as Dr. Esposito speaks about it. What occurred between the before and after MRI shots that comprise the video, was a chiropractic adjustment at some level of the upper cervical spine. It is evident from these videos that the upper cervical adjustment opened up channels that were blocking CFS from circulating down the spine. Here are the web addresses of the two videos:

www.youtube.com/watch?v=s4TbI5KaWgM

www.youtube.com/watch?v=HtQHtsyzwMU

Next I offer what might seem a contrasting point of view, which is information from the Journal of the American Medical Association concerning the leakage of CFS from a location on the spine at the level of C2, which was only noted after a chiropractic manipulation.

http://archopht.ama-assn.org/cgi/content/full/124/2/283#ECR40156F1

Now this article is not one that is supportive of chiropractic manipulation of the cervical spine. According to the article, “In fact, the estimated complication rate of chiropractic treatment ranges from 1.3 in 100 000 to 1 in 2 million manipulations with the most frequent serious complication being cerebral or cerebellar stroke caused by dissection or occlusion of the vertebral or internal carotid artery.” So this is not a pro-chiropractic point of view. And I am not here to debate that either way. A range of somewhere between 1 in 200,000 and 1 in 2,000,000 is a pretty big range, one that is difficult from which to draw much useful meaning. But the point I am making, for folks like Wylee and Wendy to consider, is that there is a reason for your high or low CFS pressure. That is the question I asked you back in March. And the evidence I give you here supports the notion that one reason for hyper-tensive CSF is that a misaligned spine has blocked CSF from circulating up and down the spine. On a different hand, a possible reason for hypo-tensive CFS, according to JAMA, is a tear in the dura surrounding the spinal cord. These tears could be for various reasons. But a most obvious reason would be an alignment, or perhaps better said, misalignment condition which places a point load or friction on the dura sheathing, opening up a tear. The JAMA report I just referenced asserts that a chiropractic manipulation could open up such a leakage spot. But here is what I read it saying, and that is that such a chiropractic manipulation, which might tear the dura creating a leak, should more aptly be considered spinal trauma, albeit somewhat deliberately induced. If it were the chiropractic manipulation that created the tear in the first place, then that manipulation was tantamount to spinal trauma. That is what I am saying. So really, this sort of cause of a CSF leak is likely trauma to the spine, and/or constant or consistent irritation to the spine by a misalignment. That misalignment could be the result of trauma as well. In fairness, the JAMA article I cite does not say that the chiropractic manipulation caused the tear. The patient had headaches going into the chiropractic treatments, after which the headaches were worse. What may have occurred is that the leak was somewhat dammed up by the condition of the spine prior to the chiropractic treatment and the treatment freed the area up to leak all the more. I do not know. But something caused the leak to begin with, which leak was likely occurring beforehand, evident from the subject’s headache symptoms that existed before the first chiropractic manipulation.

Here is another article, from Pubmed, centered on the notion that a chiropractic manipulation, presumably of the thoracic spine, caused a CSF leak.

http://www.ncbi.nlm.nih.gov/pubmed/15959358

Again, if that is true, and I do not debate that point either way, then such a manipulation should more aptly be termed, generically speaking, as ‘spinal trauma,’ rather than simply chiropractic manipulation. Essentially this article supposes that the chiropractor traumatized the spine. An automobile accident or a fall in the shower could do the same thing. But the effect, regardless of the cause, is to traumatize the dura of the thoracic spine.

So the videos I led off with at the top support and actually demonstrate that hyper-tensive CSF conditions can be caused by misaligned vertebra. Such misalignments are commonly the result of spinal trauma. On the same hand, the evidence I just offered from JAMA and Pubmed conclude that certain cases of spinal trauma can result in converse condition, the hypo-tensive condition. One variety of spinal trauma dams up the flow of CSF in the spine. The other variety pokes holes in the dura allowing CFS to leak. But the culprits in both cases are traumas to the spine.

Finally, I offer for your consideration information I found here:

http://www.sunsetchiropractic.com/index.php?catID=1&pageID=11443

which describes the ‘Sacral Occipital Technique.’ Just to highlight one of the major points of the article, the author describes three actions within the body that allow CSF to circulate unimpeded. He writes:

“C.S.F. is created in the brain and supplied to the nervous system through the gentle pulsing action of three pulses. The first pulse is generated in the brain. The second pulse is the diaphragmatic respiratory pulse - breathing. The third pulse is the cardio vascular pulse - generated by the heart.”

Of these pulses, he writes that the pulse generated in the brain, and which pulse is demonstrated vividly in the videos I supplied at the top of this post, is actually a direct response of certain 'rhythmic motion' between the occiputal bone and the sacrum, the occiputal being the skull plate located at the base of the rear of the skull, and the sacrum being the last vertebra at the bottom of the spine. That occipital plate is pierced by a large oval aperture, the foramen magnum, through which the spinal cord proceeds. So if there is either a blockage, or a leak, somewhere between those two locations, those 'bookends' of the system, which bookends serve to define the extents of the spinal cord, then respectively, one will develop a hyper-tensive CSF condition, and the other hypo-tensive one.

I will leave this here. Your post interested me and I suspected that there was a chiropractic element of this subject to explore. Thank you for this post. It has inspired me to explore some information that interests me a great deal and I expect provides the foundation for a certain group of Meniere's sufferers to find relief of their symptoms. Good luck with your treatments and thanks again.

Hank

 

Thanks for the info Henry.The cf fluid is an area that is very interesting as a possible connection to all the problems we have.

 

Henry, I went through my previous posts trying to find what I had said earlier, couldn't remember what I said on which site - just another one of the many cognitive issues I deal with. I do apologize, seems I missed your question completely, but have to admit I am puzzled by your speaking about chiropractic stuff. The whole idea that the Duke Docs have found is that for some reason the virus' have goobered up the holes that the body usually uses to get rid of the "used" CSF to maintain the correct pressure. By blocking the outflow, it allows the pressure to build just enough to cause symptoms, but not be life or vision threatening. The spinal fluid still does it's job, it still runs through the entire system of the spinal column and brain, it just doesn't get rid of the used fluid fast enough. It's as if the pop off valve needs to be reset to a lower setting, if only it could! It also seems that the virus can chew it's way through the spinal column covering and allow fluid to leak, causing low pressure symptoms, which are very similar to high pressure symptoms. The herpes viruses can pass through many, if not all barriers. That is why they are so difficult if not impossible to "kill".
Hope this answers your question a bit better.

 

Fascinating and makes a lot if sense.

 

This could all be the result of csf, I read a story of a man getting ready to get ci's and dr grey at duke wanted to work with him, and sure enough he had problems with csf pressure from a car accident, whiplash many years ago? His hearing has returned to a somewhat normal level.

I am wondering, is this now standard treatment a duke for the treatment of mm?

 

Hi Wylee,

Thanks for the response. What I am telling you, and what these videos and case studies I brought to this discussion demonstrate, is that the phenomenon you describe, the inability of maintaining the correct pressure, either too high, or too low, while the Duke researchers have their own trail that they are following, can each be explained, and even demonstrated as in these two videos, by considerations that have nothing to do with viruses, and everything to do with the physical condition of the spine itself.

In your case, your CSF pressure is too high. CSF is manufactured in the brain. It circulates from there down through the spinal cord and back. If there is a blockage in the spinal cord, a blockage caused by a mechanical impingement such as the one that had to have been in place in these videos, then CSF pressure will increase above the blockage. It has to. And it takes that increased pressure for fluid to make it past the blockage. As you put it, the blockage acts as a pop-off valve. To reset that valve at a lower setting, as you correctly assess, the blockage must be opened up. And that is what the chiropractic treatment in between the before videos and the after videos did. They increased the space previously blocking CSF from circulating, thus lowering the pressure needed to pop open the valve.

The same kind of mechanical action that closes off the circulation of CSF can also result in a hole in the dura from which CSF can leak. And that leakage explains low CSF pressure such as Wendy has.

The doctors who made the videos demonstrated clearly, at least in my view, that misalignments in the spine can block CSF from flowing. So that possibility would seem to me to be worth exploring. And that is why I bring this up.

What evidence do the Duke researchers have of a virus infecting the spinal cord or dura? I am curious what put them on this trail. Any idea?

 

This subject is actually pretty fascinating, Wylee. And I thank you for bringing us this topic.

Regarding your statements:

"The whole idea that the Duke Docs have found is that for some reason the virus' have goobered up the holes that the body usually uses to get rid of the "used" CSF to maintain the correct pressure. By blocking the outflow, it allows the pressure to build just enough to cause symptoms, but not be life or vision threatening. The spinal fluid still does it's job, it still runs through the entire system of the spinal column and brain, it just doesn't get rid of the used fluid fast enough. It's as if the pop off valve needs to be reset to a lower setting, if only it could! It also seems that the virus can chew it's way through the spinal column covering and allow fluid to leak, causing low pressure symptoms, which are very similar to high pressure symptoms."

here is a video that explains where spent CSF is designed to go to recycle into the body.

http://www.youtube.com/watch?v=PUb8iLgpY8E&NR=1

Notice that CSF is generated in the center of the brain, as he explains, largely from certain fibers that draw it from the blood stream. CFS fills all available clear space in the brain cavity and spinal cord. The brain and spinal cord essentially float in CSF. The video explains that CSF fills these areas from the top down, and then is pumped back up the spinal cord and routed to the extremities of the brain cavity where it exits through arachnoid granulations, which are vent holes in the system located at the very top of the brain cavity. At this point, CSF re-enters the circulatory system. So there is a full-circle route that all CSF takes from the moment it is introduced into the brain cavity, drawn out of the circulatory system, utilized, and then recycled into the circulatory system.

If I understand your last post, Wylee, the Duke Docs have found is that for some reason the virus' have goobered up these holes [arachnoid granulations referred in the video] that the body usually uses to get rid of the "used" CSF to maintain the correct pressure. That being the case, the CSF pressure increases. But what I would point out is that, while they may be correct, any blockage at all, in the entire system, would result in the same elevated pressure. That is because the circulation of CSF is a one-way street. Each ventricle in the brain cavity insures that CSF does not back flow. CSF is generated mid-brain and circulates to various parts of the brain, down the spinal cord, and at each disc, certain CSF passed through from the down side street, and begins its journey back the up side, ultimately to pass through these arachnoid granulations at the top of the system. There are only so many of these relief points, these arachnoid granulations. That would be by design. The limited number of relief points creates back pressure in the system, which keeps the system inflated, floating the brain and spinal cord components, CSF doing its job, as you describe.

The videos I supplied, however, demonstrate how CSF can be blocked by certain other means, blocked from actually traveling using the 'down street'. The videos confirm that CSF can be blocked by certain misalignments in the hard tissue of the spine, the vertebrae. As Bulldogs alluded, a whiplash or tantamount incident could cause this. And what happens under this condition is that CSF must find an internal short cut across the system, to eventually route to the arachnoid granulations, the ports that allow CSF to recycle into the circulatory system. Because fluid has had to force its way through the system, through space that are less than required, the continuous supply of new CSF causes pressure to build.

Now I do not say that anything that the Duke researchers are studying is invalid, not at all. All of this needs to be studied. But what I am saying is the the field of CSF circulation is not new, and there are already special career professionals who have studied this for a long time. The field of cranial sacral therapy, though little discovered, is not new. Osteopathy is not new. Chiropractic is not new. But each of these disciplines has certain techniques at their disposals that could conceivably help someone who, as in your case and Wendy's too, might bring relief to the elevated, or diminished CSF pressure you and she are experiencing.

And what I find very interesting about this subject, that being the flow if CSF, is that perilymph, one of the fluids of the cochlea, is essentially precisely that same fluid. So the source of perilymph could easily be the back pressure of the CSF circulatory system. I do not know that, only speculate. And if pressure increases in that system, or leaks from that system, then the supply of perilymph, and its internal pressure, either higher or lower than designed, could be affected. Higher pressure would tend to bloat the tissue of the perilymph channels. Lower pressure would suck that canal down, at the same time increasing the volume of endolymph in the neighboring cochlear canal as endolymph takes up the available space. This would create an endolymphatic hydropic condition, 'hydrops.'

So all of this is very interesting, and every possible reason for these pressure abnormalities should be explored.

 

Hello All!

So sorry I haven't been checking this thread.

I wanted to let everyone know that I'm still doing great! I had a mini attack on Monday. Nothing like I used to have and the first in 3 months. I saw Dr. Kaylie on Tuesday. He said to remember I'm not "cured", so I'll probably have an attack now and then. Should be no more than every 3-4 months. If it gets more often and if I start having headaches again, then they'll want to do another Myelogram to see if I have developed more leaks. After all, they don't know what caused my leaks in the first place, so it could happen again.

He said he is "confident" that I will continue to do well!!

I am so very thrilled with my quality of life now! It's amazing!

I read a post that Bulldog wrote on May 7th. Seeing what was said about me, just made me cry. I've been having mm symptoms for about 15 years. It slow progressed at first, but the past two years was a spiral downward. I haven't been working for years, but the past couple of years made me completely disabled. I rarely went any further than from the bed to the couch. I was using a walker, and my husband had to help do almost anything. Bulldog is right, I was basically at the end of my rope in life.
This has brought my life back!

I'm so happy to say that we bought me a little VW Bug Convertible last month. We have a nice little garden going. I'm starting to do more artwork again. I got hearing aids last month, I'm so excited about this, I really didn't know how much I was missing!! And last but certainly not least, we are getting licensed to have a foster child!

I can make plans again. Yes, occasionally, I may have a day interrupted because of an attack, but I can handle that. I had a lot of warning signs before the attack, so I wasn't taken off guard. The hearing in left ear dropped dramatically for 3 days before I started getting disequilibrium. So I knew not to drive. It was scary, because I was really hoping to never have another attack. But really, it was mainly just disequilibrium. I took meds, and stayed in bed most of the day. No big spins. When I closed my eyes I could see the shadows rotating slowly, but nothing like it has been. (I guess I just can't say that enough.)

I saw where someone asked what medications Wylee and I are on to control our CSF pressure. Wylee has high pressure so she is treated differently than I am.
I had low pressure. (actually, from the reading my pressure was normal, but Dr. Gray did some testing and found "normal" is too low for me) So I just had my leaks patched. I don't take any daily medication to treat this. I do still have Valium and Phenergan for emergencies, but that's it. Dr. Kaylie said if I have another attack like the one I had recently within a month or so, then I might go back on the diuretic, but for now I'm not on anything.

Often people with high pressure are treated with Diamox, or sometimes Topamax. I wasn't showing the kind of improvement they hoped for after the patches in January, and I had been put on Topamax for my migraines...well, it was lowering my pressure too much. So once I went off of that, I started feeling normal.

I truly feel like this disease no longer has a hold on me!!

Good luck to everyone!
Feel free to send me a personal message if you have any questions! I will be happy to talk with anyone.

love to you all!
wendy

 

God bless Wendy:

I still check the blog, you are a hero of mine

bulldogs/Joe

 

Wendy and Wylee,

Your experiences are very inspiring and give us all hope that we can at least control the beast (if not yet completely "cure" it) and live a normal life.


Folks, I have decided to move forward with this treatment myself and will be heading to Duke next month. I've tried many of the great suggestions on this forum... JOH, antivirals, antifungals, high C, NUCCA, OLE, diet, etc along with the conventional diuretics. The vertigo is under control, but the constant pressure and dizziness remain. Low CSF pressure and spinal fluid leaks are a good possibility for me given my history with meningitis. I don't have a lovely blog like Wendy's, but I'll post an update on how it goes for me.

Dan