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New Here---Symptoms and a question


#1

Hey all–49 year old male—new here–wondering if anyone is in the same boat as I am and can shed some light ----

For 5 weeks now (started after I got back from a cross country flight) I have been having a vertigo sensation–it’s never spinning—it’s always like the floor moving when I am walking. It’s better when I am lying still or sitting still. It comes and goes but is always associated with walking. I also get tingling/head pressure in the back of my head where I get occasional headaches made worse by the sun–not getting head pain now just the weird pressure/tingling along with this. I saw a neurologist who said this may be a vestibular migraine (this is lasting 5 weeks–do they last that long??) and said to take amitryptiline. I also saw an ENT (neuro-otologist) who said no this is MdDS do not take Amitryptiline but unlike a lot of the MdDS people I feel much better when I am lying down. I have no balance problem and can walk in a straight line—its really only this sensation and its very uncomfortable when I walk. Almost like walking on a bouncy house.

Any ideas or insight—anyone else feel like this?


#2

Welcome! For some, vestibular migraine can be chronic and last years. Not to worry though, if you’re only 5 weeks into it, you have good chance to turn it around fast.

Based on what you describe, it sounds more like vestibular migraine than MdDS, because you get a lot of the tingling/headache/pressure stuff that sounds very migraine-like and like the rest of us on here. Yes, bouncy house or walking on pillows/trampoline is very common. I still have some of that on occasion. Yes, I get headaches after being in the sun too.

Amitriptyline is certainly one of the best drugs to try. If I were you i’d try it. There are other drugs that the Neurologist can help you with if Amitriptyline doesn’t help. I am on Verapamil and it is working for me. Topomax and Effexor are a couple other popular ones. Some of us seem to get help from CBD oil as well.


#3

Google Mal de Debarquement.


#4

Hi

Well, I’m no medic just a long time MAVer but from my personal experience I’d take the opinion of a neurologist over ENT any day when dealing with balance symptoms generally, ie assuming the ENT has checked out the usual ear related balance hotspots but we are a support group, not medics so might I suggest you study Dr Hain’s dizziness-and-balance website where he has an enormous chunk of info about MdDS. You are living with this and things should soon seem more obvious to you. A good internet search for Vestibular Migraine/Migraine Associated Vertigo should help likewise. Helen


#5

Thank you very much.

If it is a vestibular migraine will it wax and wane from day to day? There are times I feel totally fine and then suddenly it starts again and the bouncing when walking starts for no rhyme nor reason.

So those of you that have had this—does it just keep going this long? It’s very frustrating as I have had days where I thought it was over (mornings are usually better) and then it starts again later in the day.


#6

Yes, it definitely can vary from day to day like that, even hour by hour. I agree, it is frustrating how it keeps going and there is no known reason why it changes.


#7

in opinion of many, mdds is on the same spectrum of mav. Ive read many posts from mdds people and a lot of them have several mav symptoms alongside with the trampoline walking. In my case, it started a few times a day and then it just stayed 24/7. With meds (effexor, which is also recommended for mdds) it is around like 80% of the tim and much milder. And yes, it varied throughout the day a lot. I would give Ami a try now that it is not chronic. Good luck!


#8

As @ander454 said it can just come and go (episodic) or it can do what mine, and many others did, and come and not go, becomes 24/7, ‘permanent’. As @dizzy3 get to somebody who knows and start some treatment once you’ve a diagnosis you find credible. Helen


#9

Thanks—

Does anyone else get their symptoms only when walking?

For those that do did medications help the symptoms and make it better?

Much appreciated


#10

Are you any nearer getting a diagnosis yet. I’m no medic but, if you are positive, you ‘only get symptoms walking’ I’d say that’s not typical of MAV. could just be you hv excellent balance system and no other relevant comorbidities and your system is - almost - coping. Otherwise I’d say that’s unusual for MAV.


#11

I get head tingling, posterior head rushes, and feel occasional movement/shifting when I am sitting but my LARGEST amount of symptoms are with walking. It is as if the floor is a trampoline and I am bouncing along it when walking—sometimes this will worsen with head movement (e.g. looking down to lift a toilet seat).

I am scheduled to see a migraine/dizziness neurologist but that is not till the end of December and I am looking to see if others share a similar feeling in the meantime and if it ever got better.

Thanks


#12

So sorry you have that symptom, I’ve had that for almost two years, but now mine is almost gone. It gets worse for me depending on what shoes I wear. Yesterday I wore some cushy running shoes on my walk and felt a whoosy… but I recovered when I got back to my house.

I think its worth the wait to see the Neurologist. I had to wait almost 2 months. It feels so good to get a diagnosis and treatment plan put together. Without it the anxiety is too much to bear.


#13

Thanks—yes the anxiety about these symptoms makes the symptoms worse like a vicious cycle. It’s such an uncomfortable feeling and I just want it to go away and not be convinced every time I take a step that I have a deadly disease.

Thanks


#14

Ah, now that’s beginning to sound alot like MAV. Please don’t hear horses hooves and think zebras. It’s a bit of a wait to see specialist but really worthwhile. It sounds like some vestibular disorder and whilst most are chronic and tend to be long-term, they aren’t deadly and eventually resolve. As you’ve observed anxiety makes it worse so try to minimise that. Distraction is a key. In meantime check out your footwear. Some find it’s not comfortable to change but if you can try something other than memory foam and springy trainers. Your balance system appears oversensitived for whatever reason and those sort of shoes make it worseas yr brain tries to obtain balancing info through your feet. Could try good old fashioned solid sole. Give the foot good direct contact with terra firma. I had that sort of problem alot, and, yes, it resolves. My balance was so hypersensitive I’d get seasick sitting in a car being refuelled, or on a tubular kitchen chair!. Solid is good at this stage. Helen