Any cures/medication for PPPD??

Persistent Postural Perceptive Dizziness

Hi Debbie,

How is the knee recovery going?

Hi Terry

Thanks for asking! Its coming along....slow but sure. I am able to walk stairs and do 10 minutes on a stationary bike. I see improvement every week. It still gives me pain especially if i overdo it.

Hope you are doing well!

Debbie

How are you doing these days???

Hope you are well.

Cheers!

Debbie

Sent you a PM

Hmmmm...had a look...didn't see a PM from you Terry!

Deb, Had e-mailsaying yopu commented to me. Don't see anything. But if you were alsoin quiring an how I feel - going on 5 years and still no relief. Jim

Got it...thank you!

Hey Jim

5 years????? That's unacceptable. What did they tell you you have?

Said it was PPPD but after all this time and with what supposedly starts it off - traumatic effect - should be gone to my reasoning. Maybe it is just simulating symptoms of PPPD and is really something else.

Just came upon your reply of about 5 months ago so sorry to take tis long to reply to you.

Since last talked to you have been to Hershey med had blood test, MRI, MRG or some combination of letters to see something connected with baby asprin - take one a day, spinal tap, questions up the geegee and so on and so forth but they found no tumor, infection, virus, rotting brain other than white marks that come with the age of 80, or any reason for these spells that seem to stay with me most of the time.

After so long I am learnig to navigate with it but the dizziness, tiredness, foggy feeling or sense of not being present at what ever is going on around me and am getting by one day at a time.

Wife said absolutely no to me ending it all. Would rather have me around in any state than not at all.

So, we go on and on and on.

Have gotten to the point that this is never going to go away.

The all loving God, that I guess all gifts come from , good and bad, doesn't seem to want to answer prayers about removing it, docs don't know what the hell is going on and pain pills seem to be only thing that helps a little. But can only stand,at most, of those a day.

About 2 days felt fine but then slid back in to feeling lousy. Taking prescribed amount only makes me want to sleep all the time. One a day is about all I can stand and still don't know that they are doing anything.

Wouldn't wish it on anyone but all the terrorists in the world. Let's see how good they are any pulling anything off when they feek like they have just got done spinning around for about 5 minutes and when they start to unwind - spin around some more!

DEB, Just scrolling thru to see what's new and ran across this post and the one above it. I know I am about a year late with this but I think we better stay away from this guy and check his credentials! 

Hi, Jim.  I have PPPD, which, so far, has lasted 6-7 years. My audiologist diagnosed BPPV, which I know it isn't. I was given a one off physio treatment of Brandt-Daroff head exercise, which did nothing. So, I've arranged to go back to the audiologist...and I'm taking a print off of the explanation of PPPD, which I found online. Hoping he'll take notice.

Hey doc! Hope all is well.. I've been suffering from dizziness/lightheadeness/unbalanced/head rush it feels like for almost 10 months now. Swaying and rocking like I'm in a small boat. Last September, Got hit with a huge wave of dizziness at work a couple days after bad sinus cold. Legs went instantly weak and could barely hold myself up. Instantly started dripping sweat on forehead. Was 24/7 dizzy/unbalanced for 6 straight months then I would have like 3 decent days then 3 bad days and continue to cycle like that. Was feeling like I was making little improvements slowing as it wasn't anything like first 4 months. I just recently had another sinus cold and instantly started to get the same level of dizziness like the first initial months. ENT mentioned he noticed something on the ecog test with my right ear but seemed like he was unsure what it meant. Is it inflammation/damage of vestibular nerve that's causing this? I'm wondering why it got worse when I had a similar sinus cold. What does that mean to you? I went to urgent care during sinus cold because I was scared to death that a few days later I would get hit with another massive blow of dizziness. Got amoxicillin and prednisone. I've had some relief from the prednisone but only had 5 days. What do you think it could be?

Has a diagnosis of PPPD been confirmed for you, as you indicated at the beginning of your discussion?  Is this diagnosis definite now?  This will help answer the remaining questions.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

Nothing has been confirmed yet.. Doc didn't mention it was that. Was tryin to see if anyone could relate

Have you ever had vertigo (a feeling that the room is spinning or you are spinning)?

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

No spinning.. More of a lightheaded, head rush feeling

Unlikely to be vestibular in origin then.  Most likely related to your sinus problem.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiology

Fellow of the European Academy of Neurology

Ive never had spinning either but was diagnosed with VN and Labyrinthitus by vestibular specialists on two separate occasions.

The weird thing is that I've never had sinus issues in the past.. When hit first hit me I initially thought I was having a stroke or heart attack. It hit me that hard.. It wasn't just a little wave of dizziness. It hit me like I got blind sided in a car accident. Could I have had a possible stroke or something? Right after that happened, a few hours later got an EKG and something was a little concerning I guess. You think could be a heart issue?

Thank you for the clarification.  In your descriptions up to now, sinus problems appeared to appear close to all your episodes.

I still insist on looking on causes not related to the vestibular system.  Of course, your physicians will continue to look into your problem seriously.  Heart related problems should be ruled out.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

Thanks for your response doc.. Once I get the heart ruled out, what tests do you think should be performed? I've taken hearing test(normal), VEMP and ECOG tests.. On Ecog test something came back with my right ear.. Not sure what that could be and wasnt explained to me very well what was going on. I'm just so tired of not knowing what's been going on this last 10 months. I'm really starting to run out of patience and hope. It seems impossible to figure out

The ENT seems to be unsure of what's goin on. Is there a different doctor that may be more specialized in this that I should see?

Lets rule out the heart first, and the response from your physician as to the possibilities for the cause.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

Dr.

Reading some other comments on here to you. Just spent an hour or more writing reply girl that wrote to me asking about my problems and if they related to hers.

THEN dropped mouse and lost reply before it got sent.

In it I mentioned to her that Ihave had all kinds of stomach and bowel problems that started after operations for Ulcerative Colitis. Went to new doctor several years ago and in exam he found two ulcers in colon, or what is left of it) 8 inches remains.

Gave me script for Hydrocortisone Rectal Suspension. Side effects scared the hell out of me but took it and seemed to help.

Have been taking 10mg's of Oxy every nioght before bed and last week gut started to act up. Took usual Oxy but also took suspension solution and felt 10's better next day. Did yard work for over 4 hours without tiring out, panting for breathe,ot feeling like on legs.

Last noght took just Oxy at bed but no Hydro and dizzy/foggy headed feeling very strong today.

What is, and what is in Hydrocortisone? Could it have effect on symptoms of PPPD?

Been to 4 different Neurologists and one sent me to new Octogry .........

whatever  nose, eyes, ear,  throat doctor. Gave me all the test results papers to take with me. Eye doc took quick look at report and said there was nothing there that he could help me with but feeling still nags me that problem caused by something deep in ears. Get ringing a lot that slowly subsides and a deep itch in ear that I can't get to.

Any suggestions as to what is wrong and if Hydro is possible  helping with symptoms of PPPD that despite all meds, doctors, tests seems to have hung on for going on 6 years now. Jim

Ed, Look up MAV on the internet -type it in as "what is MAV"