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My journey to Hell ... and (almost) back.


#111

Thought I’d cut and paste something in, here’s what I wrote on another thread in December:

Definitely improving!

Just over 2 years of MAV and I’m now 95% WITHOUT MEDS. Very confident of further improvement!

WHAT’S GONE: No more nausea, ear pressure, ear pain, extra tinnitus on bending down, 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 time (touch wood!). All these symptoms are gone! Able to walk through malls and supermarkets with few issues (mild discomfort on occasion)

WHAT’S ONGOING: Only fluctuating tinnitus, occasional migraine brain rumbles/discomfort (usually due to artificial light), mild head positional discomfort in bed, some mild episodes of motion intolerance and mild imbalance remain! I can use the computer and watch video almost without issue. Oh and I still get a feeling of a little fluid in my middle ear every morning or at night if I get up for bathroom, but its much less than it was.

DIET: On diet I am fairly strict on excluding alcohol and caffeine, but have milk and chocolate. I play lip service to low salt diet when I feel like it - but sometimes am weak and have a packet of crisps or order a takeaway!

BRIEF HISTORY: Also started fall of 2015 (Spring if you include original bout of Severe imbalance which lasted 5 weeks). Got worse for a year with mounting symptoms. Especially bad April 2016 when I had 15 hour long migraines/Vestibular attacks every three days. Couldn’t walk through supermarkets or malls without immense discomfort. Started Ami (10mg moving up to 20mg). Quality of life improved but symptoms still bad. Lots of scary relapses. Had a crazy relapse after 6 months of no attacks. Disheartening. Imbalance improved very slowly though. However started to get nearly daily positional vertigo resolved after about 6 months with sleep position discipline. Even so 1.5 years after starting Ami, in fall 2017 I was able to stop medication. Titrating down was easy but imbalance got a little more obvious and was tempting to restart but persevered. Vindicated as got through it. Now better than ever and on no meds.

IMPORTANT FACTORS I BELIEVE HAVE HELPED RECOVERY (so far): stopped using headphones, careful when bending over, careful to avoid loud noise, keep head up in bed, do not cook with salt, drink lots of herbal tea, cut out 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!”)


What does 'better' feel like?
#112

Since then I am still getting better and still without medication.

Less imbalance and almost no ‘brain rumbles’ now - artificial or mixed lighting causes little or no discomfort. Since December I’ve had the odd bad week, but definitely a general upward trend. I have not had any spinning and only very mild vertigo in bed on occasion.

Fluid feeling in ear after reclining for a while (like overnight) is still with me, as is a short burst of ‘the sound of the sea’ tinnitus when i right myself from bed in the morning (I note that one fellow board member apparently has this latter symptom @suki530)

I still get mild positional discomfort in bed which fluctuates day by day.

Tinnitus can be as annoying as ever, but usually can ignore it. One slight improvement with the tinnitus is that I don’t seem to get the crazy pulsating tinnitus I used to get (after some meals especially). It still pulsates mildly sometimes but nothing like the way it used to do.

Not following much of an diet at the moment, save keeping caffeine down to one cup of coffee on any day (if at all) and avoiding alcohol mostly - however was able to enjoy red wine around the Holidays without issues. Still going crazy with the fluids, particularly Ginger Tea (which has liquorice in it which is supposed to help with inner ear health btw).

IN SUMMARY: I’m feeling better now (whilst off meds) than my best days a year ago whilst still on meds, so excellent progress I feel.


#113

James,

Glad to read this post to hear you’re getting better and have rid many of those awful symptoms.
What is the particular brand of ginger tea you drink?


#114

Good to hear James. Thanks for posting the periodic progress.


#115

I would also would like to know what ginger tea you are drinking. Currently i am drinking celestial maple syrup ginger tea and although its yummy, i know there is better ones out there.


#116

Twinings Spiced Ginger Tea

(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!)


#117

It looks like we can get the Twining’s here in the US, at least online.

A good product line that I’ve found at the grocery store here is the Yogi brand:
https://www.yogiproducts.com/

They’ve got some good ginger varieties. They also have one called “Throat Comfort” that is good even when you don’t have a sore throat:
https://www.yogiproducts.com/teas/best-selling-teas/throat-comfort/


#118

OK, I hope I’m not going to jinx things, but I have some good, positive news to report.

My dizziness and imbalance is pretty much GONE!

I’ve gone at least 2 weeks without a single feeling of imbalance, something that’s been with me since October 2015!!

And remember - this is WITHOUT MEDS (which i’ve been off since September) or supplements! I’ve even drunk alcohol and a coffee or two within this period. OK not long I know, and relapse is possible, but lets see …

I still get tinnitus of varying annoyance and some mild positional vertigo in bed at times, but things are definitely improving!

But lets face it, this is night and day! Hardly believable given the absolute hell I was going through, just like many on this board.

Hang in there all! Hugs for everyone!


What does 'better' feel like?
#119

Congratulations, i am very happy with the news!!!


#120

Wow! Two weeks!

Can you think of anything you’ve been doing differently (say, for the past month) that might have contributed to this remission of symptoms?


#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.