Any cures/medication for PPPD??

Yes Debbie.. A constant swaying rocking sensation.. Haven't had any drop attacks lately but used to every now and then that would last like around a minute at a time. Hard to concentrate, kind of a fuzzy head. Like a lightheaded/ head rush feel

Ya like a drunk feeling.. When I initially got hit with the massive blow of dizziness I thought I was having a stroke or heart attack.. Legs instantly went weak and almost dropped to the ground immediately. Was dripping sweat of forehead. Did yours hit you super hard or gradually come one?

On

I woke up with it one morning. It was quite severe. Had been out at a party the night before...i was drinking but not heavily. Thought this was the worst hangover ever!! Lasted two years....with it gradually getting better over time. I was anxious as hell that it would never go away. It did. Five years later, out of the blue, it was back. Lasted 4 months. It got better. That was in February of last year. It still lingers but dont feel it every day. On occasion, i will feel as though its returning but then it subsides. Its the weirdest thing ive ever had!

Ya it's a real difficult thing to deal with.. I have 6 jobs so I'm extremely dizzy. It hits me real hard at work because I'm walking around so much. It's only when I'm moving though. I'm fine when sitting or laying down

I feel the same way. If i'm sitting in a chair, i dont feel it much. Today i tried doing some gardening but as soon as i put my head down, i started to feel what i call wonky. My left ear has vestibular dysfunction and my right ear is perfect. The brain is getting mixed signals from my ears and thats why i feel this way.

Have they given you any medication that has worked? Are we just out of luck? Starting to lose hope that I will never be the same

I have been taking Ciprolex....its an anti depressant. Sounds strange i know...but they calm the vestibular system. I take the lowest dosage of 10 mg once each day. It's not a cure by any means but it seems to keep the dizzies from getting out of control so i can function.

have you found anything to take this sensation away. Willing to try anything and doc is trying so hard to find a way to make me feel a little better.

Jim

When my dizzies are bad, i take Ativan 0.5 mg

Debbie

Thanks for the input Deb,

I was finding the only thing that helped was half of a 20mg Oxy. Asked doc several times if I had become hooked on that and the sensations that I was feeling was a need for nother dose of Oxy.

He said having all on hand that I did and only taking 10mg's and some days none that I in no way did I have habit for it.

I do notice that when I stay off  of it I have a restless leg feeling for a night or two and then it is gone.

Right now doc gave me new replacement for depression med and prostate med and I am laying off of Oxy to see if these new drugs, which either have sleepy feeling side effect or in Flomax case has dizzy side effects. But, most meds that I take for this or that have dizzy side effects.

Can't beat 'em with a stick, damned if you do and damned if you don't.!

Really wonder about God's existence. When Ireally feel bad I stop and realize what the kids at some of these cancer hospitals go thru every day for years and even before they have really lived or had a chance to do any wrong to deserve having this cast upon them and I guess that even if every day is hard to get thru, I don't have it as bad as they do and have to marvel at their spirit.

These are my same exact symptoms also! Could you please share with me if you ever found relief?? Thank you! 

Jillian,

Sorry to hear that you have this problem too. it's a bugger!

I have tried everything of my own ideas and that of the doctors. I can't say that I have found anything that takes is away completely.

Even tried Maryjane in smoking form and believe me that is not a cure. At least for me it isn't. Made the situation three times as bad.

How anyone can use that stuff regularly and still function - do they really? - is something I fail to see possible.

You are probably a type "A" personality and I am a firm believe that this is part of the cause. You could try things that make you not give a crap but then you are right back to walking in a dream/fog with a spinning head. Type A is the person who is bugged by a lampshade being crooked and  has no rest in their butt till they get up and straighten it. I have a large area rug in the den that has fringed edges.

THEY DRIVE ME NUTS IF THEY ARE NOT ALL STRAIGHT AND LAID OUT LIKE THEY SHOULD  BE!!!!!!!!

I have considered cutting them all off but I think that getting older is helping me 'cause I am just too tired to let it get to me as it did when I was younger.

Tai Chi was recommended by the neuro doc at John Hopkins and it is probably the best in as far as getting your balance back and I guess if you keep at it faithfully it may go away completely  -  I didn't.

Impatience is also a curse and I wanted immediate cure. When I didn't get it I slowly stopped the Tai Chi. Type A coming thru.

I want to be able to take a pill and have it gone.

I have other problems, not connected to PPPD and for the one I take Oxycodone. Let me say of you are taking this stuff to get a high, then you are in trouble 'cause you will become a junkie. More than 30mg's a day gives me constipation and more than that makes me itch, especially my face.

I found that if I wake about 5 in the am and take a half of a 20mg, go back to bed, I find when I get up that I am not as effected by this PPPD until later in the day.

Taking it or not that early still does not prevent the feelings of dizziness/foggy head. After about 20 - 30 minutes of being up - here they come-not bad but they come when I bend over, tilt my head forward to brush my teeth or tilt it back to shave under my chin. They subside after a couple of minutes and do not hang around or seem as strong as they would have had I not taken the Oxy.

Somebody in these comments mentioned that Prednisone seems to alleviate the sensations and I have found that too. Thought it was my imagination at first but paying attention to the symptoms and their strength on the days that I did or did not take Pred I believe that it does help. Why? I don't know. I do know that taking too much of it over a long period of time is not good for a person so you have to be careful with that stuff. Always good to talk to a doctor with anything that you self-prescribe. Seems like most of what is out there today for just about any ailment is good to cure the problem - if it doesn't kill you with the side affects. Maybe the doctors can explain an element of what is in it and how it might help. maybe even suggest something that contains all or a lot of that mystery element!

I believe that getting as much sleep as possible is a help. I would love to be able to devise something that would allow me to sleep upright - in a standing position - and wonder if doing this for a long time would eventually take the damn stuff away. As I, and all others in here that suffer from this, talk of feeling better when sitting or laying. Maybe it finds it's strengths  to plague you while standing thru the time that you are laying or sitting down. So, maybe if you feed it all the stand time that you can while you sleep it will give up.

Crazy! Yeah, I know but that is the way I bet that a lot of people that are so damn sick and tired of this PPPD that they will try anything.

I have had this sensation going on 6 years and it scares me 'cause I am starting to get so used to it that I don't know how a normal person feels not having to contend with it. It seems to take extra strength to get thru what for most is a normal day and leaves you zapped when you shouldn't be. Not feeling really rung out after doing a little bit of labor. Feeling tired but unable to sleep. Working out in the yard I come  in and hardly have the strength to get a shower. Feel like I am going to drop off as soon as I sit. But, I don't. I am wide awake and even though still plagued by the sensations- feel pretty good.

I watch others going about their days business and I wonder in awe of them at the pep and vigor that they seem to have. I used to be like that. My daughters used to call me the Energizer Bunny 'cause if we were all working on moving one of them in or out of their present home, or some project that required as much help as you could gather, I was the last one to stop working. Even though I wanted to keep going, to get it done all the way, their insistence made me give it up.

I will be 80 years old on Feb. 1, 2018 but I still feel in my mind that I want to get up and go and I do most of the time when I am working on a project but I pay for it over the next few days - zomieville!

I wish that I could tell you something a little more concrete than what I have said but I really don't know and I don't think the doctors knows yet. Not too much attention has been paid to it. It is probably too late for me to ever have a normal life again-unless I wake some morning and it is magically gone - a constant wish, so maybe they will start soon to pay it some serious attention and the younger ones that get it will be able to find an instant cure - even at this time I feel that an instant cure would be good if it took a year to accomplish.

Keep me posted and let me know if you find anything that helps a lot more than most of what we all have tried so far.

Best of luck to you in getting away PPPD free. Jim

 

My exact symptoms also I lie down a lot because thats the only time I am free of the dizziness and balance issues I am almost 79 and wonder if I will ever had peace. The Neurologist at my local Hospital wont see me as cant help me I am about to have a cat scan .

I started with Mal De debarquement syndrome and then 18 months later have PPPD .

I like your remark about staying upright and perhaps the dam thing will get sick of it and go away.

I worry about falling and use a stick . I am from New Zealand