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My journey


#121

I have felt a very steady, extremely slow improvement for months (hence why i was able to give up medication).

I believe I can roughly guess when the condition peaked and its been downhill for many many months since. I think the condition worsened for the first year, remained at its most rubbish for about another 6 months then started to improve VERY VERY VERY slowly. I think finally getting rid of imbalance is just part of that journey.

I’ve done nothing special expect keeping moderately active, haven’t avoided ANY environments (except loud places), kept positive and patient. I did STOP running, but I’m not sure if that’s helped. It might have even slowed my recovery?

I have generally stayed away from alcohol and I’ve drunk A LOT of herbal tea and generally kept my fluids well up.

Diet-wise I’ve not stopped myself eating anything … in fact I have chocolate and milk in my porridge EVERY MORNING! I eat a lot of vegetarian food, so I’ve had some really good nutrition. Diet-wise I’ve probably broken every migraine diet rule in the book. There have been times when I’ve noticed not being careful with chocolate and caffeine has worsened my symptoms, but its only been an increase in discomfort, mildly, and its never actually brought on a migraine.

The 3 pillow thing may have helped. Definitely seemed to have reduced vertigo at night. Not sure its a cure though.

i’ve avoided STRESS. I try to avoid arguments or defuse them. I’ve walked away from conflict. I’ve been out of work for a while and this has definitely helped, though is a luxury some can’t afford (I didn’t have much option initially, the company dinged me).

So its really hard to say …

Basically it ‘seems’ like the swelling I believe I have in my inner ear has been essentially decreasing steadily with time … this spells itself out in a host of symptoms - less tinnitus (hardly ever get pulsative tinnitus now, certainly not as much as I used to get after meals, less tinnitus when straining), less imbalance, less discomfort in artificial or mixed lighting, less fluid in middle ear, less vertigo.

I still have symptoms of course, so its not over yet, but I can function pretty much 100% now, though I’d say i’m 95%-98% of the guy I was … which is pretty good I suppose …

Much that I grumbled about my neuro - she dismissed my symptoms being down to an ear injury (something my more recent doctor is sure about), she did get one thing right - this thing is slowly disappearing into the background like she said it would. More evidence to me that MAV & SEH may be very closely related or simply the same thing.


#122

You deserve this. Congrats. We at least need our site admin to be dizzy free :slight_smile:

Enjoy your morning coffee! ( the thing I miss most in my diet)


#123

We ALL deserve this and I truly believe we will all get here.

Going to stress, I’m definitely NOT RECOVERED, but the signs are good!

Yes, site is incredibly stable :slight_smile:, never falls over :smiley: Got to hand it to the developers who work on Discourse and Linux, really good. You could never run this so reliably on Windows :smiley: (though I do like Windows on the desktop :slight_smile: ). Oh that’s a discussion for Meta …


#124

That is so great to hear James. If you don’t mind me asking, what supplements were you taking?


#125

None really. Tried magnesium for a bit but wasn’t happy with the side effects. Hope that clarifies.


#126

James, I thought you might be interested in this article about ear MRI:

http://journals.sagepub.com/doi/full/10.1177/2514183X18758588


#127

I’ll probably merge this into my Personal Diary, but thought it deserved a post of it’s own for now.

SPOILER: It’s a kind of success post.

Three years today my vestibular trouble started … I got dizzy 15 minutes after pointing a shower into my ear in an attempt to clear some wax … to say that was a stupid thing to do is an understatement(!) :man_facepalming:

I suffered an acute spell of 5 weeks of imbalance and nausea after which the entire issue appeared to clear up (apart from a feeling of fluid in my ear as I got up every morning.)

I was delighted and my hearing had been normal the whole time. I thought I’d dodged a bullet.

I hadn’t.

5 months later, whilst sitting in a meeting at work, I was hit with a sudden, shocking feeling of lightheadedness as if a switch had gone off in my head.

What followed was a fluctuating mess of all the MAV symptoms we know and love (:face_with_thermometer::nauseated_face::rage:), although the migraines only started a few months later, and I started Ami.

About 1.5 years into this hell I started to detect improvement.

Now, I’m overall 3 years in from the first incident (and about 2.5 years from the start of the chronic period).

I’ve made huge progress, I’d say I’m about 80-90% and 100% med and supplement free now and here’s the summary:

WHAT’S GONE: No more nausea, ear pressure, ear pain, extra tinnitus on bending down, significant hearing distortion in loud places, feeling of pressure in ear when driving, vestibular attacks, migraines, anxiety, rocking, marshmallow floor, push/pull, vertigo, spinning or attacks of any kind (touch wood!), migraine brain rumbles/discomfort (usually due to artificial light), head positional discomfort in bed, . All these symptoms are gone! Able to walk through malls and supermarkets with no issues.

WHAT’S ONGOING: Only milder fluctuating tinnitus and some very mild lightheadedness/imbalance that usually catches up with me by evening. I still get a feeling of a little fluid in my middle ear every morning or at night if I get up for bathroom (a short burst like the ‘sound of the sea’ :beach_umbrella:), but its much less than it was, a slight muffling of hearing at night and sometimes a feeling something is dripping in my ear.

MY WORST DAY NOW: Annoying, nagging but low level tinnitus, a feeling of ‘off’ or a very subtle non-specific mild imbalance.

I can use the computer and watch TV without issue. Artificial lights don’t bother me anymore.

DIET: I have completely stopped any special diet. I am considering lowering salt though. I have one coffee a day :coffee::balloon:

IMPORTANT FACTORS I BELIEVE HAVE HELPED RECOVERY (so far): stopped using headphones for music, careful when bending over, careful to avoid loud noise, keep head up in bed, drink lots of herbal tea (usually ginger & liquorice), minimise alcohol, get out as much as possible and don’t restrict activity, have been out on walks even when when feeling totally rubbish, TIME!, low stress levels (very important to get a grip of anxiety and stress imho) = OPTIMISM! (“This too shall pass!”). DISTRACTION = do something MEANINGFUL! (one of which for me was taking over the running of mvertigo :slight_smile: )

I still get frustrated and slightly depressed with the condition at times and I am still not satisfied with the progress, but progress I definitely HAVE made! I look forward to more!! :sunglasses:

I hope this gives people hope that things can SIGNIFICANTLY improve! Thanks for listening!

NB Finally must say I’m very grateful for this community and always impressed with the empathy, civility and kindness demonstrated every day on this board. It’s an absolute honour to run this website.

NB#2 I know that I’m relatively lucky and some people have suffered from this dreadful syndrome with worse symptoms for much much longer. My heart goes out to you … and I dearly hope you find your path to recovery.

NB#3 Now I know that at this point many people at this stage of recovery post this kind of thing in the ‘Success’ thread then seem to leave mvertigo. I don’t have that option :computer: … so I’ll be here to update you about my progress in the coming year :slight_smile: In any case I don’t feel like the full success I want to be yet … here’s hoping I can achieve higher highs! :sun_behind_small_cloud: :rocket: (and that you do too! :bowling: :raised_hands:)


#128

Well done James! Now maybe back to the piano?


#129

Thanks Margaret!

I actually sold it … hearing isn’t what it was … the main issue is not the tinnitus but the hyperacusis. I haven’t ruled out getting back to it in a couple more years … let’s see how things settle down (the hyperacusis has definitely calmed down a bit so far)


#130

Oh my goodness, that is a shame. I stick cotton wool in my ears when things get too loud in the orchestra!!! Not very attractive I know but I could not cope without playing my instruments. I hope you get back to your playing again.


#131

Haha, awww poor you. But I’m very pleased you’ve kept up with it! That is the totally right attitude!


#132

Congrats James. Enjoy life :slight_smile: Everyhthing happens for a reason , it you did not point your shower in your ear, mvertigo would not be around anymore :slight_smile:


#133

You totally deserve it James. :+1:


#134

This is great news. Congratulations, and I hope your 80-90% will soon become 100%!


#135

how about taking up the drums!? :drum:


#136

james be proud and stay proud you’ve come a long way and I don’t doubt for one minute that you wont reach your goals, keep trudging your doing great!


#137

Thanks Mel.

And you are right, that’s exactly what it has been. ‘Trudging’ and through what appears to have the resistance of treacle … but somehow you arrive at a better and better destination … a little better every year and eventually the sun started to shine :sun_with_face:


#138

Wow, James. Thank you for sharing plus the way you presented it, was logical and concise. Good for you! I hope this for everyone.


#139

Thanks. Me too John!!


#140

Did you use headphones to drown the tinnitus? Like the movie “baby driver”. Sorry, it just reminded me :yum:.

I use headphones a lot because my migraines become so boring. It helps me distract myself to pay attention to music/ also helps me fall asleep.

Do you think they contribute to migraine/ head sensitivity? How did your headphone reduction help?

Glad you have found ways to help you. Good luck