Helpful Info for Newbies

Welcome aboard, simplensweet! I hope you find answers here.

I just took your suggestion to heart, and added a link to the acronym thread to the bottom of the "Info for Newbies" thread.

 

Please include the info about the link between abnormal spinal fluid pressure and dizziness. Since it has already proven to improve the symptoms of MM, RHS and other vestibular diseases, it is a topic worth pursuing with your doctors.

 

Hi, Wylee, and welcome. Do you have any info about this link? What is the cause of abnormal spinal fluid pressure, and what is the fix?

If you could provide some links, esp to PubMed studies (or other studies), I would be happy to include it! Thanks!

 

There is no written papers, yet. Our Doctors at Duke are conducting research. There are two of us that frequent this forum that have had good success with it. Oh well, guess we'll have to wait until the study is published.

 

Wylee, why don't you start a thread about this in the Living Room section of this forum?
Include whatever information you can, including (if you know) what causes abnormal spinal fluid pressure, and how you and your colleague treated this.

Was this related to Ramsay Hunt Syndrome?

The more info you can share with us, the more people you can help!

 

Taximom, already did that ?????? Guess you haven't seen it.

 

Sorry, Wylee, I had not seen your post. The only one I found looks like an advertisement for the Meniette device.

I have not yet seen any proof that abnormal spinal fluid pressure is the cause of Meniere's symptoms, nor have I seen anything from members here for whom the Meniette device cured their symptoms. (There may have been some, and I might have missed them.)

If I was looking at the wrong post, can you please post a link over here directing me to the correct one?

 

I note you have ramsey hunt syndrome. Have you taken acyclovir or another antiviral for you balance situation? A number of people here have had success with acyclovir 400 mg 5 times a day or 800 X 3 a day. We have another member, Jordan, whose husband had something similar to Ramsey Hunt syndrome who has had success with acyclovir. Forgive me if you already have done this.

 

The antivirals are effective only during the initial outbreak of the Zoster virus. It is useful as a suppressive measure also. I do not qualify for that. I am dealing with the residuals following having had Ramsay Hunt Syndrome. There is another member, Wendy, who has bilateral Meniere's, who is the same study I am and has also had beneficial results. We have both posted under:

http://www.menieres.org/forum/index.php/topic,31484.0.html

and also:


http://www.menieres.org/forum/index.php/topic,24244.0.html

This is what I was afraid would happen. The posts have become lost in the huge amount of new postings. The research study is very important to ANYBODY with dizziness issues, but especially Meniere's and RHS. Thanks for doing something to bring this back to the forefront.

 

This does sound very interesting. I would still like to see some studies showing that abnormal spinal fluid pressure is the problem, and explaining WHY, even if it is only for a specific subgroup. And then I would like to know what is CAUSING the abnormal pressure, and if there is a way to deal with the cause without having to do something invasive like a lumbar puncture.

That said, though, I can certainly see that for some people, a lumbar puncture would be very appealing, even with its risks.

However, if you look at Henry Sullivan's NUCCA thread, it sounds like that is a less invasive way to deal with either the same problem, or one closely related, and it seems to deal with the CAUSE (or maybe one of the causes) of the problem rather than the SYMPTOM.

I never saw either of the posts you linked, so maybe a new thread might be in order? But again, I would request more than just a personal anecdote (though I don't discount anecdotes!)--some studies/research would be really nice.

 

Unfortunately, we ARE the research. The Doctors at Duke have only been doing this since August of last year.
Sometimes we never do find out the WHY. Sometimes the end result is more important. I just was hoping of finding some way to pass on the word. It has helped many with RHS, it has helped folks with Meniere's. If anyone is interested they may contact Dr. David Kaylie at Duke. I have tried my best, but feel unwanted by this group. So, I bid you all good day, good luck and may all of your prayers be answered. Mine have.

 

Taximom,

I really appreciate you taking the time to put together the list in this thread. It was especially helpful for a newbie like me to quickly find all the possible treatments that may help me. That said, I believe it is important to list all the possible treatments that may be helpful, regardless of whether studies have been completed.

I for one find the study that wylee and wendy are participating in to be very interesting and promising as a potential treatment. That doesn't mean I don't still have questions about how it works or whether it effectively addresses the root cause. The study may not yet be complete, nor widely available yet, but I think it is important for everyone and especially newbies to have an easy place to find all possible treatments, not just the "proven" ones (and what qualifies as "proven"?). If you feel you need to make a distinction, then perhaps categorizing your list would help.

Also, this may be one of the few truly effective options coming from MDs. While I am personally open to (and participating in) alternative treatments, there are many that only feel comfortable working with MDs. Not including this important info would cause me to question the completeness of this list.

Thanks,
Dan

 

Dan,
Thank you so much for so eloquently stating what I could not. You have nailed it.

Linda

 

I'm sorry, Wylee and Dan, but unless you provide more info, all I have to go on is posts from unknown persons describing an experimental and invasive procedure, without even an official description of the study itself, let alone what criteria are used to determine eligibility for the study, nor yet what possible causes were already ruled out in test subjects.

The thread that I compiled is mostly devoted to treating the known CAUSES of Meniere's symptoms, not invasive procedures to deal with the symptoms themselves. It does utilize anecdotal evidence--but only when there is also available research indicating a link between cause of symptoms and possible treatment, and I have tried to list both anecdotal evidence and available research/explanations. It is by no means intended to be a complete list of all available treatments for Meniere's.

Please feel free to start your own thread, and include whatever you feel may be helpful to others. That is what this forum is for!

 

This is the only thing in writing, but should be sufficient to get those interested in learning more to contact DUKE:

http://otolaryngology.surgery.duke.edu/research/clinical-research/vestibular-disorders-clinic

 

Wylee, I didn't see anything in that link that mentions the treatment you described. It just says: "Physicians at the clinic conduct clinical research to learn more about vestibular function in people who suffer from balance disorders such as Ménière's disease, migraine-associated vertigo, and viral inner ear diseases. Several studies are ongoing that will provide insight to help improve therapies."

That's not a lot to go on.

 

I was referring to the next sentence on that page:

In addition, we are conducting research into chronic, disabling disequilibrium after Ramsay-Hunt syndrome and Meniere’s disease.

I think we have beat this poor dead horse enough. As I said, and I repeat one last time, Duke is conducting research into a possible solution to chronic, disabling disequilibrium for those who are interested contact Dr. Kaylie or Dr. Linda Gray Leithe in radiology.

 

I know this is probably not the place to post this but I am anyway. I believe that Wylee/Linda is feeling bombarded with demands of web site or written documents of what she has been experiencing in her life right now. She tells no one that this is a cure. She tells no one that they should do this. She is providing information that may be of interesst to those who are interested or would like to contact the doctors who are doing the tests and will have a better grasp on what, if any results are in right now.

Linda, Please don't feel like you're not wanted here. That's just not true. Some people want facts, not probabilities. I think the information you have provided could very well be of interest to people and they may have the qualifications to enter the research based on their specific condition.

There are many places to post and I'm sure you'll find the support you need/want here for your condition. If someone wants facts, they can get in touch with the researchers involved as you have kindly pointed out. Don't leave, you really are welcome.

Holly

 

Thanks, Holly--well said!

 

-deleted post--sorry