In early 2005, I started having a “twitching” nerve at the base of my neck. Kaiser Hospital in Roseville, CA, gave me several tests. Yes… the doctors looked at me like I was crazy when I described my symptoms to them (ear “fullness”, etc.) and were no help at all. A few months later we moved to the Houston, TX, area and I was diagnosed with TMJ which, after an expensive year of treatment, turned out not to be the problem. Saw a chiropractor, acupuncturist, you name it!
Finally went to a neurologist and he prescribed moist head massages and some exercises, plus a drug called Baclofen. After 8 sessions of this, I was barely able to walk! Ended up at the hospital for 4 days in Houston and was given Lyrica, Clonazepam, Mobic, and Fenofexidrine… ALL AT ONCE! Diagnosed with “Inflammation of the fifth nerve”. When I got back home I was a ZOMBIE for about a year, sleeping all the time. Finally was able to stop all the drugs except Clonazepam.
Then I started feeling like I was “walking on a mattress”. Looking back I think this must have been a reaction to all those drugs! To make a long story shorter, I have had 3 MRIs, seen an ENT (yes, all the awful tests). He sent me to a balance therapist, and I did all her tests with no problem. She said my balance was fine and told me about MdDS, but I hadn’t been on a cruise for two years! She said in 14 years as a therapist, she’d never seen anyone like me. Since that time I just about gave up! I am now 80 years old and thought my next few years would be ruined from this MdDS thing.
However, I learned about “spontaneous onset” on your site and realize I am not alone; not all MdDS is motion-triggered! I have lost about 7-8 lbs. recently, have been taking multivitamins, walking the dog around the neighborhood, and doing “leg-lifts”, etc. I actually couldn’t wear any of my old shoes and have been wearing bootie-type sox (the kind with little spongy circles on the bottom) in the house. That is, until I finally found some slip-on, stretchy canvas ones at Walmart. $10! They have a ballet-type sole, totally flat (they’re called “Lynley“). One morning the “mattress-walking” sensation was gone!!!! HAPPY DAY! I can actually balance on one foot now! I am still wearing sox around the house but shoes feel fine when I go out. After 8 years… It’s like a miracle! Maybe it is the exercise and the “massaging” effect of those spongy dots on the sox that cured me. I have no other explanation to offer.
Having made the rounds of all the “usual” medicos, I am now seeing a manual therapist. She wonders if the supportive shoes we wear these days is part of our problem. Millions of nerve endings in our feet provide a lot of information for balance – in our natural barefoot state. I wonder if Alice’s experience supports the credibility of this theory. I’m now walking in soft-soled shoes like Alice since I don’t have any foot problems like plantar fasciitis or bad arches. Maybe this is my “miracle!”
I know that I feel more off balance when I wear shoes. I go barefoot at home and I feel more in control doing this. When I put shoes on, I have more of a feeling of falling and only put them on when I leave my apartment and use a walker.
I have a medium sized soft blow up plastic ball (about 20cm diamater) that has little round soft spiked protutions all over it. Massaging this over my body and especially around my head and neck area really helps. I also get very very good relief from my symptoms if – when sitting, I roll this ball back and forwards on a steady tray – (the sort with a padded bottom and flat top that people sit on their laps to do craft & eat their TV dinners off).
Recently (for another condition – ‘pancreas not quite producing enough digestive emzymes – very mild problem) I also started taking micro doses of a pill form of digestive enzyme called Creon – just once at night with a high protien meal. I do this last thing at night because – for me the drug initially makes me a lot wobblier, ‘badly tight headed’ and faint. Very disconcerting actually. (Doctors tell me the drug shouldn’t be effecting me this way?) Anyway – after persevering with this drug over time, I eventually realised on waking up the next day – that the MdDs symptoms where not as sharp and nasty and were much easier to cope with. I do have a complex medical history so my experience might not be helpful to anyone – literally anything could be happening? eg: the drug helps with sleep, has a sedative effect – and possibly some long term malnutrition might have been exacerbating the MdDs ? But i have struggled with this condition – (Diagnosed by Dr. Alan Pearce – Deakin University Neurology) for more than 10 years now and for me, I’ve felt the positive effect of creon to be quite significant.
Just thought it might be worth a cautious mention as I believe for most people it’s a harmless drug to take ? Definately needs prescription ! and Doctors supervision.
I take the lowest dose pill available, and never take more than one half of the pills granuals – as I’m genuinely disconcerted by the initial – pressure in the head side effect. Definately does not feel good for me.
I’m not sure how this drug effects the MdDs brain and for all I know it might be doing me harm, but for now I have to take this drug to stay healthy – so I have to take the risk and put up with the side effects. I do notice a deterioration of MdDs symptoms when I try to stop taking the stuff.
‘Something to think about’
Can you guide me to any other spontaneous MdDs sufferers’ stories who began their symptoms at an earlier age. I’m 40 and my symptoms began 3 months ago. They did seem to start during a time where I had some fluid in my middle ear but that has long resolved and I’ve seen an ENT, Chiro, GP, had a CT scan, neuro screen in the ER, and having an MRI next week. The reason I’m convinced I have MdDs is I have the the rocking or being in an elevator sensation 24/7 (at varying levels of intensity) and I ALWAYS feel normal driving a car. I have no other neurological symptoms. The only difference is this started around the time of the ear fluid and heavy stress, not after time of passive motion. I know there must be others. Just looking for some support.
I also have spontaneous MdDS and have had for 5-6 years. However the only difference is our age as I was 70 when mine started but was in a very stressful time of my life. Like you I have gone through all the testing and have had 4 MRI’s with no signs of any un-normal readings. Mine started at a low level of 3-4 and now I am at a level of 8-9 every day. Have had no remissions during this time. Mine was diagnosed by an ENT who is familiar with MdDS, but only after they had done all the other testing on my ears and brain. My hope for you is that being at a younger age, that they will find causes and cures before you have to endure many years of this. I had to give up driving and have to use a walker whenever I leave my apartment. I am always so sad when I hear of another person who is suffering. I pray for you and all others with this condition. Most doctors have never heard of it so you have to tutor them. love to you and prayers.
Ginnie, we could only find one other “Faces of MdDS” story in the archives. Pamela’s trigger may have been childbirth, which is certainly a stressful situation. You can read her story here: http://www.mddsfoundation.org/pamela-kelleys-mdds-story/
If you are a member of either of our online Support Groups, you will find many others with spontaneous onset. Unfortunately, they have as many questions as you but hopefully there are answers for you as well.
The G-Force is the hardest part to handle. One time I can get up OK and next it is a real struggle just to geet out of a chair. This MDD syndrome is very hard to navigate thru my life. I was so glad to have someone else talk about the G-force.
Alice would like to add that she bought new bootie-sox at Stein Mart last week; “found that they keep them in stock all the time. They’re called Thera Soft ultra plush moisturizing socks, by Earth Therapeutics… $9.99 for a package of two. Also, the floors in my new house are all tile or laminate, and I believe that really helps. Carpets are NOT good!
I am cutting back on the Clonazepam and will soon stop taking it altogether… and am “re-learning” how to drive, since I haven’t driven for 8 years!”
I’m so glad to find others who got this spontaneously and are more my age. I am 68 and have had it for a year and a half, and didn’t think that there is any hope for a remission for me. I was dx by Dr. Baloh who said that it is caused by the small vessel disease he sees on my mri and that there is a support group for it, and that was it. My gp doesn’t take it very seriously since it isn’t fatal, which is what he also told me 20 yrs. ago when he dx me with fibromyalgia. The one difference I have is that I don’t feel better in a car….I feel like I’m on an amusement ride. I also get tired of being told it is just my age….I have lots of friends my age and none of them feel this way. I just hate the G Forces and have tried to explain it to others, but they don’t understand. My family doesn’t really understand it and don’t know how much effort it takes to help with the grandchildren. Well, thanks for letting me vent. Here’s to hoping that we can achieve a remission too!
You bet it is not all in our heads. I started out saying I felt like I was walking on a tranpoline.
This year is more like walking on a fishing boat. In a long hall I am thrown from side to side. I now just sort of waddle, walking from one leg to the other sideways. I am able to do water aerobics, my therapist said I had to keep my legs and ankles very strong. Last year I fell 4 times, so far no falls this year,2013. When I go to a new Doctor (not about this syndrome) I always take a explanation printed out for the Doctor. I also have a G-force (my therapist named it.) I feel like I am getting up or walking in an airplane. Something is pushing me down, other times I don’t feel the pushing down.
Congradulation to the 80 year old women for it going away. I am waiting for my miracle. I am 76.
I am 74 years old and into my fourth year of MdDS which was spontaneous. I can almost write word for word what these other ladies have stated about going from doctor to doctor and taking test after test with no results except doctors thinking it is all in my head. My ENT diagnosed my case because he had a friend that suffered from the same thing, but had no answers about how it started or how to cure it. I am taking Clonazepam .25 four times a day which is all that makes me able to tolerate the walking on a mattress or trampoline feeling. Now I am having lurching instead of just bobbing all day. The ear pain and fullness along with the balance problems is more than I can handle some days. Have to use a walker if I leave my apartment and cannot go where there is noise, a lot of flashing lights or people moving all around me. Pretty much ends life as I knew it. I worked for 52 years and this started just a few months after I retired. Riding in a car does give me some relief, but the symptoms are back as soon as the car stops. I am sick of doctors that do not or have no inclination to figure this out. Thank God my family understands or I would probably commit myself to an institution. Why or why can’t we find some answers to this and quit having to inform the doctors instead of them informing us. Thank you ladies for your insights as I know there are others going through these same things and know what I am talking about.
Louise P. Edwards July 15, 2013
I am 73, 1 1/2 years into MdDS. I got it from a cruise. It is relieved when traveling in a car. I tried to talk to four different doctors here and they acted like I was a poor old demented lady and dismissed me on this subject. I found out on the internet what I have and it is classic MdDS. I am better right now except for ear pain and heavy head. It will come back. I have no hope that it is cured. Once I had a five week period of remission. Thought I was cured. It always comes back. I have concurrently two more rare and recurring diseases. When I have a good day, I rejoice; when these monsters hit me, I just try to hold on, staying at home and trying to rest. My rocking friends on the internet have helped more than any doctor. Please God, send us a cure soon.
Pat, please send the name and address of the doctors mentioned to email@example.com. We will send them an educational letter and brochure on MdDS.
my dear 80 year old person!! your story mirrors mine, up to and including our age and the negative responses from meds and doctors!! i am soooo tired of being told ”you have to expect this when you get old.” showing them the brochure that tells of the median age is between 40 and 50 does no good; they still don’t believe there is such a syndrome!!! i’m done talking to closed minds; my own primary care physician tells me ”anyone can open a web site – that means nothing.” what’s left? learn to live with it. and i agree with your solution to ”mattress walking”. it works a lot! i try to stay away from confusing sites, such as crowds, street fairs, any places with multiple patterns, and especially looking up or down. i’m able to balance much better looking straight ahead, not bending over, or trying to catch sight of that plane overhead! lots still to be learned about MdDS – it isn’t just all in our heads as they’d like us to believe! keep on keepin’ on!
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