Walking like on a waterbed, trampoline?

Hi everyone,

I was just wondering if any of had experiences where you feel like you’re walking on a waterbed or trampoline. Is this normal with MAvV or do you think I might havd MDDS? I’m now getting this feeling pretty much 24/7 and its horrible! Sometimes I feel like I’m going to fall it gets so bad and I do feel better in the car. Please tell me I’ll get better and I won’t be like this forever. I’m only 31 and I want a second chance at life!

That is my worst and most chronic symptom. I have felt like I’m walking on a trampoline for the past 2 years (I am 32). it is horrible. It is definitely a familiar MAV symptom. we’ll find something to help. I haven’t found the right med yet, but I hope to. I know what you mean about getting a second chance at life, because this current state is no life.

I forgot to mention that I too feel my very best in a car

HI Mavlisa,

I’m so sorry you are dealing with this. Have you gotten any better over the two years, or has the trampoline walking stayed the same for you. I am hoping and praying that over time maybe the feeling will subside some for me and it won’t be nearly as bad as it is now. I hope I can find the right medicine to help me!

This is one of the most common symptoms of both MAV and MDDS. I know the feeling well, and only get it on the occossaniol dizzy spell now.

Thanks Brian,

Did you have the trampoline/waterbed walk with you 24/7? I hate it so much. Did this go away once you found the right med?

I have days / weeks when I feel like that. When it is present it feels as though i will never be normal again. I lose perspective. It is the most difficult time for me. It has been two years and two months now. I had had quite a few bad weeks like that but so far, thank God, they have passed so that I do not have that intense a feeling constantly. When I was exercising regularly and following the diet I was so lucky to have about 5-6 months when I felt really good. Some days passed when I forgot that I was even dizzy. I still don’t feel good yet, and do have symptoms very often throughout the day but it is not as constantly horrible as during those difficult weeks. I re-started the diet about one month ago and I hope to start exercising again soon. Lets stay positive and say that your constant symptoms too will pass.

dizzyinaz,

So sorry to hear your still having these tough symptoms. Are you still trying the Topomax? I hope that at your next neurology visit, your doctor can give you some clear direction. Hang in there!!

dizzyinaz - I sadly have had these symptoms chronically since Aug 2007. I got sick June 2007, and strangely my symptoms went away several weeks in July, came back, and went away again for a few weeks, then returned August 07 and never left. Please don’t be discouraged. everyone is different. I think I’m quite a bad case, and haven’t found the correct meds yet.

Lisa,

The waterbed feeling slowly built on me over several years until it was 24/7 for over 18 months. It went away with all three meds I tried, returning each time I went off a med. I have now found a med that I can tolerate and that feeling has gone away except for the occasional dizzy spell. I am willing to put up with the occasional spell as long as the 24/7 is gone.

Brian - that is great news!! What med are you on? I cannot wait to find a medication that works for me. your post gives me hope

I currently take Depakote and Klonopin. The depekote is not a normally prescribed med for migraine meds, but it is in the same family as Topomax and works for migraine prevention, has fewer and more tolerant sede effects, but is hard on the liver. I will probably have to give it up sooner or later and start the search all over again.

Brian

I have heard that Depakote is a good drug for this. Have you experienced weight gain? I know that can be a side effect. Nice to hear that you are tolerating it. I was worried about its side effects.

The weight gain is an indirect side effect of Depakote. One of the side effects is muscle fatigue. With that fatigue, you just become lazy, and everybody knows that when you become lazy you put on weight if you don’t decrease your food intake. I have put on about ten pounds over a two year period if it helps you any.

Brian

Brian - that makes sense, thank you!

Hey guys!

I know it has been awhile since I have posted. I know the feeling you are talking about all too well. Since I have been on the Verapamil it has gone away. I only get an occasional “whoosh” elevator feeling now and then. I had the waterbed walking feeling 24/7 for a few months. I found that the keys to beating this thing is : proper med, adequate sleep routine, good diet, supplements, exercise and most of all positivety. I was so negative and depressed with MAV. People from this forum really helped me. You will not be like this forever. I swear by Verapamil. I know everyone is different though. I was at such a low point with all of this, I couldn’t see any hope of getting well. I am so much better now, we recently had a death in the family on 3/11. My sleep routine, diet, and med schedule has been way off. I can feel myself getting fatigued. That is my clue to start getting back to my routine A.S.A.P. Sleep is so important along with diet and moderate exercise. I am hoping this week I will get back on schedule. I swear with us women, it is hormonal. Keep the faith, I am praying for all of you daily.

Nance

Thanks everyone for your advice, support. These symptoms are so scary and I wasn’t sure how many people have experienced these or not.

Hey Nance,

I’m so glad to hear you are doing so well. I hope one day I will be where you are. These symptoms have been so hard to deal with and I hope I will get better as time goes on.
It’s so frustrating. I see people walking about, taking their balance for granted and I want to be normal again so badly…heck I would take 80% of my old self right now. I sincerely hope all of us will get the help we need and we’ll be 100% again.

Hey Colleen,

I actually stopped taking Topamax, I couldn’t take the side effects. I see a neurotologist for the first time tomorrow so I’m hoping he can help me. I want to get some more tests done to make sure I don’t have anything wrong with my inner ears (I hope not). Then, hopefully, he can tell me which meds he think will be right for MAV. I hope you are doing well.
I know you’ve been dealing with this terrible illness for many more months then I have. About what percentage are you at about your old self?

MavLisa, and everyone

Do you also feel like you are looking through a handheld video camera, and it shakes back and forth sometimes when you walk? It usually lasts about five seconds but yesterday it lasted about 20 seconds when I walked. Now on top of the other awful symptoms, I’m getting the feeling like somebody is picking me up on my right side when I walk. Does anyone else get these feeling?

That’s my most chronic symptom, although it’s reduced considerably over the years. The “rocking” sensation when I walk vs. full blown vertigo. As someone else noted, driving in a car is not an issue. The issue has always been when I put my feet on the ground and walk. That’s when I feel it.

dizzyinaz,

I hope your neurology visit goes well and that your doctor can get you started on a medication that will help you and doesn’t make you feel worse. I would say now, on most days I am functioning around 85-90%…which is great. This is with the Cymbalta, diet, vitamins, stress management, etc. I still have days here and there where all I want to do is lay down, but they are becoming fewer and fewer. In the beginning, I remember feeling the way you did. Every time a new symptom started I would start getting worried all over again and then I would end up feeling worse. You’re gonna get through this and soon you WILL start to feel better. Let us know how your doctor visit goes!

:slight_smile: Colleen