The Vestibular Migraine Community

General trends and how is everyone?


#1

Hello!

Sometimes there are scary times when I come here and am completely overwhelmed by everyone’s stories(like right now.) Then there are other times when I am feeling really good and I am more hopeful about the future. I just wanted to know, in general, how is everyone doing? What trends have you noticed? What is your outlook on this? I have been dealing with this since fall of 2015.This last year has been a lot better than the previous year,but I am still juggling what the best treatment option is and I still feel like I am walking on a tightrope sometimes. And I just wanted to try and get a general idea of how people feel about all of this. Thank you in advance.


#2

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!”)


Suffering from MAV or PPPD
#3

Added a poll for you to capture stats :slight_smile:, hope this helps (should be interesting!)


#4

HI

I’m getting better.

If 0% was my worse period (this summer, May to August), then i’m now at an average of 65% (flucutating from 80% on a great day to 50% on a no so great day)

pizotifen, release of stress, diet, and pro-biotics (this kicked off with a gut infection) in that order have been key, along with gently increasing my exercise level each week.

so, i’m frustrated not to be getting to 100%, hugely grateful I’m not at 0%, and vary between positivity that i’ll get there (on good days) and worry that i’m backsliding (on bad days).

hope that helps!


#5

@gidlabu
I totally understand you! I am certainly glad that you are not feeling at 0% and yet I can also totally understand your desire to be as best as you can be. I am in the same place. Now, do you think you have come to a diagnosis?

I have been feeling pretty well the last couple of months, however, I have just switched medication and I feel like I am back at square one so I understand your thoughts! I look forward to hearing from you!


#6

@turnitaround

It is so awesome to see your story over a timeline and to see that even though you went through periods of feeling had, that you got through it and came out the other side. It is also helpful to see some of your tips. I do think I should walk more. I think that would be good. Right now I am going through a period where I feel I am back at square one again. I have switched from ami to noritriptyline and don’t feel that well. But I know I will make it through this and will get better. It’s great to see your journey!


#7

oh one more thing - whilst my remaining symptoms fluctuate, I don’t really get ‘attacks’ anymore, touch wood!!!


#8

That’s good to hear! Right now I’m dealing with a general sense or motion but another thing I’ve noticed while I’m at work is that I feel a mild whirling while sitting at the computer all day. Not sure what to do next.


#9

I’ve had exactly that sensation in spells. Sometimes it’s a mild spin, sometimes it’s a sway, a to and fro and sometimes a push and pull.

Over time this diminished and I no longer get it.


#10

Somewhat affirming to know you had the same symptom. I’m just very annoyed and it’s very hard to deal with. It’s been every day for the last week, but gets worse sitting and staring at the computer. On my weekend it was a little bit better because I was moving around more.


#11

Hang in there Camille … it takes time for it to settle down!

As @mazzy says, we all want a quick fix, but sometimes nature needs to take its time to heal :slight_smile:

Some people rush so much to get well they get surgery or even (shudder) gentamicin treatments to kill off the ear to reduce vertigo, when perhaps if they just were patient things would get better spontaneously.

Yes nature is very annoying in this regard!!

The trick is to look back every 12 months and decide if you are better. If you are better then wait another 12 months and ask the same question … then you start to realise recovery is eventually inevitable … if frustratingly slow!

I have had a leak in my ear since my accident in the shower and the leak has got better so very slowly over time … eventually my other symptoms started to improve as well … but I tell you it hardly changes week to week, but over 6 months at least I have identified improvement … 12 months and its easier to tell.


#12

I used to have 24/7 symptoms, every minute for 3-10 seconds until I started TOS exercises. Now it is there only if I turn my head to left or use my left arm and the neck at the same time. At least it is under my control. If I don’t do anthing (incuding typing), I do not get the symptoms. So, hang in there, There is light at the end of the tunnel. Be your own advocate. Please read my previous post of Dec 20th. Good Luck!