Feeling worse in the evenings...why!

Ears, nose and throat
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Hi all:

Hope your all well. I'm curious does anyone feel worse at night. Everyday almost I get home from work and I start cooking dinner and sure enough here it comes the drop feeling, falling feeling, being pushed forward crap. It seems the more I move around the worse it gets. It's almost every night. Even sitting I feel like I'm on a float, up and down in water. Do any of you feel this way? It's as if I can't tolerate moving around esp walking. This has got to be the worse syndrom out there. What's worse is there isn't really help for it. I've been researching all kinds of things. Ive found quiet s bit on heroes virus and thus. There's a lot out there about people with all these symptoms taking anti vitals and it going away. Makes me wonder.

Well any help would be appreciated

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What your describing is MdDS ( Mal de Dembarquement Syndrome . I've had the same condition 5 yrs . 

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When i had VN, i felt worse at night because i was tired.

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My ENT specialist said MAV and slight mdds.

5 yrs that's a long time, I'm sorry it's been so long and at all that you have this. May I ask what all your symptoms are? Did you notice the sensations would change at times? I felt rocking/swaying in the first 10 months and then in the past 2-3 months I get diff sensations like leaning to the left, falling backwards, floor dipping it bouncing, swing feeling when sitting slightly back on the couch, nausea, head and neck pain, anxiety, depression, vision off, balance off, this is almost 24/7 I do get good days. The other thing I've noticed is on the good days there is no dizzy feeling or anxiety. Also do you feel it thru your whole body not just the head? I feel like it's more thru my body them my head.

Are you on meds? If so which one? I tried Amitriotyline and it helped but after 6 days I had a reaction and my Vision was also very strange so they stopped the med, they gave me nortriptyline but I'm afraid to take it.

Thanks for any help

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I was going to mention tiredness too as I feel more off when I'm tired! Debbie how long did u have VN for?

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The first time was 2 years and the second time was 4 months

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Yikes 2 years! I think I had VN 5 months ago. Much better but still have ups and downs

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Yes it,is,worse at the end of the day for me, and am sure many others. It's because you have been using all your resources all day, eyes,,ears,,vestibular,brain,,to maintain equilibrium.,,Hardly surprising eh? I've felt,thismway from day 1! 

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Mine started shortly after my second knee replacement,I'm fine while sitting or lyeing,when I stand and walk I get lightheaded,dizzy.falling feeling. I'm better in the mornings,the tireder I get the worse it gets,my energy is gone,feeling anxious or depressed,ear specialist passed it off as a mixture of age(I'm68),weak ankles & knees,fear of falling,prescription drugs & weight,a lot ot guessing,my doctor thinks I'm worrying too much ha, no relief in sight.

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Hi Patty ,just up on pad , my symptoms are what you describe , but I think I'm getting possible answer as to its original cause .SCM ( STERNOCLEIDOMASTOID ) Rocksolid on this site put me onto this ,go take a look ,see if it . The symptoms matches up to me exactly . Mine began after an Osteopaths visit for my bad sinuses   Never having had MdDS prior to that visit. I believe he moved this muscle , within 2 days this had began . 

  I suffer from tinnitus . That's another problem many suffer from . Yes I get constant anxiety . Nature of what this does ,for some not all though . Depression No . The only time it's not noticable is when I drive . 

 S  My neck ache is one side only left ,my worst tinnitus side ,the mastoid bone behind this ear is always elevated ,plus I get lot of ear infections in same ear . This matches up to the STERNOCLEIDOMASTOID muscle . 

   This and all balance conditions can give you fuzzy eyes , but 4 eye test says it's not eyes for myself ,just the condition of MdDS for me ,some days it's there ,then lighter days eyes are fine . 

  I've tried all types of meds for this ,non have helped . I take non now . Antihistamines have helped many so I don't dismiss anything to go and try .

  Depression type meds aren't just for depression they work in other ways ,for other conditions always bear in mind that in mind . With me I found they just increased anxiety levels . 

   Will say be wary of any therapy session ,some have been known to make matters worse  IE Osteopathy ,Chiropracters . Going by what's happened to myself . Buyer beware . What age are you Patty ? Try antihistamine . Hope you get help ,it's hard living constantly with this . Keep walking best you can ,retrain eyes ,ears and brain. Always here to chat okay . 

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Hi Marlene:

Thank you so much for chatting with me.  This dizzy craziness is very hard to deal with, thankfully my family and my work are very supportive.  Having this is very hard to explain to others that don't have it, this is not something that can be understood unless you have it.  

I've been seeing a chiropractor who specializes in forward posture which I have, with working in front of a computer all day.  Its odd because before the dizziness started I had noticed things like when watching t.v I would tilt my head to the the left and when standing I had a sway in my back, like I was leaning back a bit to stand, and after getting this I read that alot of people with inner ear dysfunctions will tilt the head and stand with a sway back.  But after seeing this chiro and working on the posture things are better.  But i do know whatever is causing this is effecting the left side, well at least that seems to be the side I feel the leaning on and have my neck and head pain on.  Altho they say whatever side the pain is on is usually the opposite side the problem is actually on, so guess its the right side, which is where my ear has these vibrating things in and the ear that does all the popping.  Its all just crazy to me.  

I am like you I never had MDDS symptoms before, about 5 yrs ago I had BPPV and that was easily cured.  But this when it hit was much worse and more scary.  I've had it now for a year, granted its calmed some and the VRT helps but 80% of the time I feel dizziness in my body more than my head and off balance when moving around.  Its very maddening to me and of course that causes stress and anxiety so then it only gets worse.  So I'm working on not letting it get to me and cause more reactions. 

I believe the SCM and other trigger points in the neck are a part of the the cause.  Funny, every time i get a headache, my neck and those knots on the back of the skull where it meets the neck hurt as do the tops of both shoulders and the only thing that helps if gel ice packs and advil or aleeve.  So yes a lot of this could be the SCM and other trigger points.

Before the chiro therapy I had headaches daily but they are better now, thankfully.

My vision goes off here and there and thats usually before the MAV kits in and the migraine starts, this week I've had sinus congestion on the left side and my left eye is off in the mornings, but taking sudefed helps some.

You mentioned antahistimines, are they particular ones that work?  You said you had tried other meds, may i asked which ones?  I've tried amitriptyline and it worked well except for the vision and reaction.  You don't take any meds, niether do I, i'm scared of the all, so many side effects.  Did you do VRT?

I tried anti depressants years ago when my thyroid first went out of whack, as they all thougt it was anxiety, but I had awful reactions with all of them, so I won't take them.

You asked my age, Im 54 and in my 4th yr of postmenopause and wonder if that may also have something to do with this.  My gyno said that we still have hormones in very small amounts so menopause can go on for many years, yipppeeeeee.  I know i have bad hot flashes and lots of them daily, which since this dizzy stuff started when I have a hot flash I'm having increased dizziness during the flash, boy it bites. I think I'm just a wreck.  Of course having health anxiety does not help, but working on that.

Your right this condition is awful and having it daily makes things hard.  I miss little things like just being spontaneous and getting up and going, because now its hard to just go, I will think maybe tomorrow I'll go shopping then tomorrow comes and I feel bad so I stay home.  I don't like crowds anymore, I like things to be quiet and not so much activity around me.  Funny the things you miss and took for granted.  

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They love to blame it on age huh?  Strange how they say nothing about the Vestibular System which is primarily the main reason for most people. It's,probably because they dont learn about it at Med school,

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hi just came across your post . you sound like you have or had the same symptoms as me. did you find anything to help. thanks