Guidance –Swaying - do not know what to do

1

My Dear Friends,
My name is Nick and I have been suffering from the below symptoms from first week of April this year. Can any one related to this ?

Symptoms

  • Constant swaying feeling like on a boat which is almost all the time
  • Sometimes feeling like falling backwards when brushing teeth and looking at the mirror
  • Discomfort to the eyes when looking at certain patterns
  • Judgment failure or dizziness when walking up or down the steps.
  • Steady balance in the morning for approximately an hour when I get up.
  • Swaying starts to occur after approx 1 hour, When brushing teeth and looking at mirror feel swaying.
  • Symptoms Increases at work ( work in IT ) or when I go out for shopping
  • Feel pressure in forehead especially near the nose when no nose blockage is there
  • Feel heaviness and pressure on top of head and ears
  • Constant buzzing ( high frequency ) sound in the ear , especially right one.
  • My eye do not like when in fluorescent light and I do not like working under fluorescent light and I prefer natural light as these feel better for my eyes
  • Wet feeling in ear and sometimes ear feel closed and sometimes open
  • Tightness in neck. When rotate neck grinding sound coming from base on neck near to ear
  • No headache. But I had bad headache in 2014 summer for days.
  • No nausea
  • Sometimes observed that when driving it is less
  • Sometimes observed the symptoms are not there but for it come later. It is so frustrating.
  • I have observed that when I walk I feel like gliding sometimes even if I know I would not fall.

This is going on for now more than a month and I really getting de-motivated. Some days are better than others.

What I have been doing ?

Met one neurologist and he said I have anxiety. I do not think that as I have been in very anxious and tense situation in my life with none of these symptoms. By the way he did all the hearing, balance test all looks normal. Also MRI done looks normal. Blood test done looks normal.

Met one ENT who is a neurotologist as well. He does not think I have anxiety but I may have mild viral infection which may have caused damage to my vestibular nerve. He gave me prednisone for a week. No relief from swaying. Now I am not convinced as if I have vestibular nerve damage then how come in morning I feel fine. Also cannot explain the pressure in my nose near the forehead and heaviness in my head.

Met a vestibular physio and he did a vHIT ( vestibular Head Impulse test ) and he said all looks fine and he gave me few vestibular exercises. He gave 2-3 exercises to do which I am regularly doing.

I am taking the below medicine and supplements.

Sublingual immunotherapy medication for past 1 and half year to control my allergies. It has been helpful so far.
Medicine to reduce my cholesterol rosuvastatin 10mg.
Magnesium ( magnesium aspartate dehydrate 500 mg ) supplement ( Magmin from Blackmore )
Vitamin B12 , Vitamin B2 ,Vitamin D3 ( + cholecalciferol ) and Fish oil

What I think and would request your opinion on ?

I do not think I have Menieres since I never got a rotational vertigo. I do not know what I have but reading the posts from folks on the forum I am thinking VM ( MAV ). I am happy to be diagnosed with ANYTHING as long as I get a treatment , a pill or something to stop my swaying.

My GP asked me to take valium but my ENT neurotologist does not think it may help so did not take it. GP has put me on serc, prochlorperazine, penergan and nothing stops by swaying so I stopped it.
I am planning to see a good neurologist who has helped people in similar situation. The names I am hearing are mentioned below. All are expensive and I do not have much money to spend. So would you please share the experience you had with them . I am based in Sydney.

  • Dr Shaun Watson
  • Dr Ron Granot
  • Dr Miriam Welgampola
  • Dr Michael G Halmagyi

Is there hope for me ? will I ever recover from this swaying and feel normal ?

Sorry for the ramble…many thanks for reading.

Nick

2

Hi Nick

I think a lot of people here will recognise the symptoms you describe and will be able to sympathise with the trouble getting a diagnosis to begin with. It really does sound like MAV. Do you have any light or sound sensitivity? I had pretty much all of those symptoms. It can be managed and you can get better.

I see a neuro-otologist. They specialise in balance problems. I’m in the UK though so I’m not sure how your system works, but if you can see one of those it would be a good call. MAV seems to be treated with diet and lifestyle modifications and medication. Anticonvulsants or antidepressants seem to be the go to meds. I take an antidepressant called nortriptyline and it’s worked wonders.

While you wait for your appointment, what you can do yourself is start the diet and modify your lifestyle. So going to bed and getting up at the same time every day, try to reduce stress levels and watch strenuous physical activity (although exercise is recommended, just don’t go too far). I can give you a list of food to avoid. These are measures you can take while you wait for a proper diagnosis.

Hope this helps a bit.

3

Thanks a lot Scott ! When one say sensitivity to light I always think what it is. I do not like to sit at desks with fluorescent light. It makes me uncomfortable like strain in my eyes. At work I pick a spot near the window where I get natural sun light.

Would be great if you can share with me the list of foods to avoid. I do not smoke and drink. May be an occasional glass of white wine. That also I dropped. Apart from that i have stopped my occasional tea , coffee. I used to eat chocolate liberally, stopped that as well. If any other things to stop, would really appreciate if you could advise.

4

Hi again

Yeah, I always struggled with light in like that. Sunglasses can help although I still can’t bring myself to wear them inside! I also was really sensitive to loud noise. Or lots of different noise going on. My brain couldn’t filter any of it out.

So my doctor recommends avoiding the six Cs. So that’s caffeine, chocolate, cheese (and other dairy so no cream, yoghurt, buttermilk etc but a little milk and butter is ok,cottage cheese is fine and goat and sheep cheese etc are fine). Chinese (basically msg which is in just about anything that comes out of a packet but just watch for large amounts ie flavoured crisps, ready meals etc , he told me not to sweat over tiny amounts in stock cubes and things). Chianti, or any red wine. No citrus or bananas or pineapple.

There’s a substance called tyramine in most of these foods that we are avoiding. Active yeast is a problem so no fresh bread, it must be a day old and no marmite (not sure if you get that but it’s a yeast extract spread, don’t know where that leaves vegemite!). He says eggs are a problem for some people, but again, don’t sweat over things that contain egg, just don’t go having an omelette.

It’s pretty daunting at first but it’s really not that bad once you’re used to it. I’m at a point where I can have some white wine or beer and be ok. The main thing is avoiding stress ad that seems to be the biggest problem.

Give this a go in the meantime. There are no miracle cures that’ll work over night but this will start giving your brain a bit of relief to start being able to calm down.

5

Thanks again Scott. I will start modifying my diet.

By the way are you 100% now relieved of swaying. Did any medication help if so how long did it take ?

6

Hi Scott and Nick,

I also have the swaying or walking on a trampoline feeling that is constant. Scott how long did it take while being on nortriptyline for the swaying to go away? I’m just done week 2 of nortriptyline, started at 10mg in week 1 and just finished 20mg about to start 30mg on week 3 haven’t noticed any difference.

By the way Nick,
I also have the grinding sound in my neck and high cholesterol and work infront of computer all day.

7

I believe neck and shoulder problems are part of mav. I’ve always had trouble.

I started the nortriptyline last July but I increased at a much slower rate- 10 mg every 6 weeks. I felt improvement at about 20 but it took a good couple of months to improve. I’m at 35 mg now and am ticking over at about 95% or better most days. I’m female (user name may be a bit misleading there!) so I don’t know if that makes a difference in terms of how much of the stuff you need. Perhaps men need a higher dose? No idea on that though!

I think I keep overdoing things a bit and that’s why any subtle symptoms still linger. Any stimulating activity, even very simple things like a trip to the supermarket or even chatting to friends stimulates your brain to enough of an extent that if you do too many, it hinders the healing process. Well that’s my experience anyway.

8

My doctor said it takes 4-6 weeks to know if the nortriptyline is doing anything so be patient.

9

Thanks for your reply Scottl. Interesting that my doctor has given me an increase of 10mg per week, which is very fast. I’m supposed to get to 50mg/day and be on a maintenance dose. 4-6 weeks? Ok I’ll try to be patient with it then.

10

I was wondering if any one can help me with this.

One doctor told me Vestibular Neuritis. But I think I have MAV espeically since I have constant swaying + constant pressure in my forehead ( mainly ) , top of my head and lot of pressure at the juncture of nose in between eyes and forehead ( not sure what is this position called ).

Now if i take an an antidepressant like nortriptyline would this work as a vestibular suppresant and prevent any balance compensation my brain is doing ?

@ Scott - Just for my peace of mind. Could you relate to my symptoms and do you really think I have MAV. My first neurologist told me I have anxiety, my ENT told me I “may” have vestibular migraine but he told me “such an acute onset and no history of significant migraine headaches makes it less likely”. I had told him that in the summer of 2014 I had headaches every day in the afternoon for few days and it went away. Even if you do not have a history of migraine can you still have MAV ? or am I having pure vestibular neuritis. I am bit confused on what I really have :slight_smile:

11

It seems people are given different rates to increase the dose. So follow your doc’s instructions but it takes time for the medication to have a noticeable effect. So it sounds like he wants you to get to 50 as quick as you can then be on a maintenance dose? I was told to increase every 4-6 weeks and stop when I stabalised. Then I’d be on that dose for a year’s maintenance. I hit 35 and seem to be doing ok so I’ll just stay here. Maybe go to 40 just to see if it gets rid of the residual symptoms. So I suppose the difference is I’ve been working out my own dose, but sounds like your doc knows where he wants you to be and just wants you to get there quickly. It took a couple of months to feel any improvement though.

12

I have most of the symptoms you described. I have particular problems looking into mirrors, or focusing on things up-close in general (so like standing at the urinal and staring at the wall in front of me, I tend to get “blips” of lightheadedness or unsteadiness). On bad days, the floor feels like it’s moving up and down below my feet as I walk.

I am trying to go without caffeine but I haven’t been 100% with that – I had a cup of black tea this morning because I was so zoned out/tired. I went almost a week without any though and I’m gonna try to do that again. Chinese food is definitely bad for me. My neurotologist told me to get the book “Heal Your Headache” (it’s on Amazon), which mostly focuses on stereotypical headache migraine, but attempts to cover all types of migraine including vestibular. The dietary restrictions on there are very daunting though and I can’t bring myself to commit fully. He also had me start taking B complex and magnesium.

Just to comment on the Valium issue – my GP gave me a prescription for that way back when my problems started (it was more acute for me then – hard to even get out of bed), and I’ve found that it works. I took 2mg 3x daily for 3 days, then down to 2x daily for a couple of days, then down to 1x daily for a couple of days. Now I only ever take one when I feel particularly bad (which tends to be on very tired/stressful days). I go through one 60-pill subscription per year, roughly, so maybe one every other week? Not so bad in my opinion. My VM is definitely made worse by anxiety though, and sometimes I take the Valium for that, like before flying.

Last, I’m convinced my VM is also made worse by my bad posture. I had to go to physical therapy for bad posture, which was causing tingling and a slight numbing pain in my left arm for a while. (Went to a cardio first because that scared the sweet Jesus out of me.) I try to sit up straight more, but I still put my neck in bad positions or slouch from time to time, and I think after I do that for a while my “blips” of lightheadedness are worse.

13

Sorry to hear what you are going through miggyko !

I am meeting Dr Shaun Watson next month. His nurse did all the balance / hearing test and all came fine. I had done already one with my previous neuro who thinks I have anxiety dizziness and send me away !

I saw and ent and he said I have labryinthitis and gave me some steroids. no use. When I suggested to him MAV he said , could be but unlikely as I did not have headache or history of headache. So I am confused if I am Lab or MAV but no matter what I have the constant swaying feeling , heavy heady , pressur on top of my head and frontal nose and buzzinf in my ears. He said try Amirtypyline and put me on a 10 mg one. Just started now. Now I am getting blurry vision also… Not sure if it is a side effect. Not sure if I can try valium with Amirtypyline . Need to ask my GP, but GP’s are generally clueless…

14

Hey guys,
I posted “my cure” a few days ago - basically I’d encourage you to try some or all of the below supplements. I still haven’t figured out which ones are the most important but in combo, I’m perfectly fine now… I still want to see if I can minimize the supplements so I’ll post if I can reduce them and see if I stay fine. I can work fine though in front of my computer now and under fluorescents. It’s a true blessing.

200-300mg daily of CoQ10 (blue bonnet or Whole Foods brand)
200mg of Doctors Best Hyper-Absorbable Magnesium (chelated) 2x a day - spaced out by 12 hrs
1 Claritin redi-tab daily (NOT claritin D- just the normal claritin)
400mg B2

This also seemed to help me even more: 3 pills of St Johns Wort daily (GAIA brand-which is standardized) but I seem to get a little bloated and have a bit of insomnia when I take it, so I’m not taking it right now and I’m doing fine still but it did seem to cut the final part of the symptoms

I am doing really well though, drinking wine, 1-2 cups of coffee, anything I want to eat, living life again…it’s so strange to have recovered that I don’t even know how to feel about it!!! I hope it lasts:)

GLUTEN seems to be a trigger for more symptoms though, since that’s inflammatory and in foods high in sugars often.

Sorry if this seems complicated, but it’s not…once you get into the routine. The only hard part is swallowing so many pills every day!

Gabapentin helped me with anxiety from MAV…but I don’t need it anymore thankfully.

Liv xx

PS Another good brand of magnesium that helped me was KAL brand of magnesium glycinate, but perhaps not as much as drs best (but I want to see if drs best is causing a bit of GI issues for me…it’s a mystery if that’s the thing or the CoQ10…)

(NB from admin: this image links to a product this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. Thanks for your support!)
More recommended supplements here.
15

Thanks Liv. I know what I am going to ask could be different to different folks. But how long did you have to take these supplements to see a difference , especially getting rid of the swaying feelling.

Also could you please descibe your initial symptoms ( if you remember :slight_smile: )

Mine is - constant swaying , rinning in right ear ( mostly ), pressure in head / nose and ears. When rinning s loud swaying also increases.

16

BY the way I am taking the below for 1 week now. No effect yet

Bitamin B2 200Mg each twice a day
Magmin ( blackmore ) Magnesium Asparat 500 Mg 1 times a day
Vitamin B12 1000 mcg
Vitamin D

Now I am going to add
CoQ10
Gingko Biloba as well…

17

I Relate a lot to your symptoms. MAV just like similiar diagnosis can’t be proven by lab parameters or MRI Scans or the like. And it (probably) can’t be cured. So, you can only treat the symptoms.

The one thing is to very close attention to your diet. Mind you that the symptoms can occur up to 24 hours later.

Things that are helpful for me are:

  • anti histamine (I use cetirizine)
  • migravent
  • Vitamin C
  • travel gums containing dimenhydrinate

I get along with that pretty well. If that doesn’t help you (enough), then you can try topamax or similiar. Those can have nasty side effects though

(NB from admin: these images link to products members have found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)

Migravent
More recommended supplements here.
18

Hi Nick

Many people suffer with mav without the headache. Headache or history of headache do not have to be present for the migraine diagnosis. I don’t get migraine headaches. I think you need another doctor. Pain is a symptom of migraine but there are many others too.I was told I had lab in the past and it’s a common misdiagnosis.

Follow the diet and lifestyle changes and continue with the ami until your appointment. I take nortriptyline which is a newer version of ami, thought to have fewer side effects. I also take magnesium glycinate and b2 - 400 mg of each are considered to be helpful for migraines. I started the supplements at the same time as the drug so I can’t say how much they’ve helped but I wouldn’t stop taking them. The nortriptyline is definitely the the thing that got a lid on this. My symptoms eased over time so it’s hard to say how long it took exactly but probably a couple if months. There’s no magic cure I’m afraid, nothing will work straight away or over night. If it’s migraine, your brain is in an irritated state and it took a long time to get that way so it will take time to calm it down. You can get better though.

19

Thanks Scott. Once we understand the issue then it is matter of finding the right med. But the question is how do we cope till then ? There should be some way like anti anxiety or some way to cope with the symptoms till we get he magical pill !

20

Do you have any anxiety to start with ? I once tried Bromazepam. The swaying and dizziness was worse than ever, I had to hold on the walls while walking. It’s just that I didn’t care at all about it. Besides that I felt like a ghost on it …