Miniere's disease anyone?

[kricklekrin]

Can Chiari cause Miniere's disease?  I hope I spelled that right.  I have been having a lot of problems with my ears.  They feel full and I feel like I'm under water.  My hearing is muffled.  It's driving me crazy!

We finally captured epileptic discharges on my EEG and I'm now on Zonegran.  I'm feeling a lot better with the exception of my ears.  I was at the ENT yesterday and they want to rule out Miniere's.  

What next?

[selmaS]

  At the top  of the forum just above the post a comment button u will see ...about this forum; and important announcements....if u place ur cursor over Important announcements u will see it drop down, click on the title for the poem, here is the link in case u can not find it-

http://www.medhelp.org/posts/Chiari-Malformation/So-I-Say-poem-by-Dr-John-Oro-a-Dr-that-truly-understands/show/1136687

U may find the Ehlers-Danlos group a good place to check out too, we have some video links there and u will find them very informative.....

http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

[lynmus51]

what do I need to click onto in order to find the poem by Dr. Oro??? I did just check out the multitude of symptoms for ehler's danlos and I truly will be asking my new doc about that as well..of the 41 symptoms that I found posted on the one site, I have 33 of them, so that is a little spooky in and of itself..the ehler's danlos was also mentioned on the Mystery Diagnosis episode that I mentioned...What symptoms I don't have, my sister does, so now am wondering if she could possibly have a cm1 as well...I have the MVP and she has the AAA...She too has allot of vision problems, horrific pain in her neck and back, just many of the same things I am experiencing....And no, in answer to your question, this was never mentioned to me..I have to go with my gut feeling on things like this, much like I did with the EPI dx that I was able to figure out myself on my little dog..I have to make sure I am o.k. as I do have to go to great lenghts to insure her health...She is who has been keeping me going these past 8 years and I promised her I would always be around to take care of her...I had actually recorded that paricular episode on M.D. and then a few days later, had a horrific migraine and guess during that time, I deleted it out by mistake...I again have to believe there is someone out there who can help me and will do everything I can to make sure it happens....thank you again... lynda

[selmaS]

....but has it worsened?....that is something u should keep close tabs on....were u ever checked for ehlers-danlos, it could be the root of ur all over pain as well....I have it and know all too well the pain u can get from it and lack of sleep as u can not get comfortable....

Once u r seen by a true chiari specialist u will see a huge difference...and if u haven't found it in ur reading, we call the lack of interest and the brush off by Drs " the royal chiari run around"...since  they send us from one dr to the next and we get no where....

I know u r frustrated bcuz the dr did not take ur chiari dx and ur pain into account or as seriously as u r or want them to....but, u know u have sleep apnea, so I encourage u to keep close tabs on it : )

Read the poem at the top of the forum by Dr Oro, u will see there is hope that there are Drs that understand.

[lynmus51]

I can see where you have kind of been appointed as the mother hen of this group and that is an absolute compliment..Over the last couple of days, I have been reading one post after another trying to get a true handle on this thing...It wasn't just the sleep study thing that truly got to me with this particular doctor...It was more the fact that my visits with her were 2 months in between times....She never asked me if I was doing any better with the headaches and clearly I was NOT...As I had stated in a previous post, she was completely dismissive of the chiari 1 malformation even as I told her I was very concerned about it and the fact that it had last been seen on an mri that was done in 2002 and that I was worried as I knew things with these formations can clearly change over time and I would not be able to have an mri....I walk in her office using a cane as I have had to do for the last 3 years and she asked me why I was having to use it, even after stating to me that "you have a very uneven gait"...She knew I had the meniere's, that I had been diagnosed with both m.s. and fibromyalgia...She merely did the follow my finger test and told me to grip her fingers and that was it...Asked me how many fingers I was seeing and it was 2, when in fact it was just her index finger...I told her the headaches were unbearable at times... My blood pressure can easily shoot up to 196/120 when I have my worst headaches and on top of that, I am diabetic as well...I know that it was not an ill conceived request to have the sleep study done, but my primary concern was the pain, the weakness I am now feeling pretty much all over my body....Five years ago, I was probably in better shape than I was when I was in my 30's...Now, not so much...I would love to be able to get a normal nights sleep, but with all the pain from my neck, back legs and shoulders, that clearly is not going to happen..I have to believe in my own heart of hearts that there are other doctors that are clearly more understanding of what we go thru on a daily basis....I want to continue to find a reason each day to laugh, be happy and be the support for my best friend that I know she needs me to be....But she has seen just how far down I can get with this thing and says this scares her far more than her own cancer does.....Where do you go from there???My apnea has been diagnosed in 3 different sleep studies...I know it is there.... lynda

[selmaS]

  Here is a link to the mom's original post about her DS and his death being covered on TV's Dr G medical examiner....

http://www.medhelp.org/posts/Chiari-Malformation/Chiari-Related-Death/show/1176509

[selmaS]

Hi lynda...chiari and sleep apnea go hand in hand many times and to relook at it is not out of some ill conceived idea...and when u r having sleep issues is really something we all should do. Did they do a test to see if ur blood is oxygenated?....I had this done and it ruled out a need for the sleep study....

But as chiari symptoms worsen it is possible for sleep apnea issues to crop up as well.

We had a member write about her DS that had the chiari surgery and once home died as a result of undx'd sleep apnea...it is so sad to see this happen....

Topamax will affect u the first 2 weeks u r on it then u adjust...but I agree, I almost quit taking it at that point, but things leveled out....I am on a lower dosage then most, as I do not respond well to meds, and did not do well when we tried to up this dosage.

Neurontin or gabapentin same thing...was not good for me as it made my "IBS" issues worse and did nothing else for me....

We all will have a diff cocktail that will work for us....

The thing is, it is better to get tested for something and be safe...then to not do it and there be an issue.