How to know if you are getting better ... my thoughts

1

And I mean really getting better (not just better because of the medication’s symptom control).

I think there are at least three areas which show you:

  • Physical clues
  • Mental clues
  • Social clues

I think in each of these cases I suggest you look back six months and ask yourself, have I improved since then? Any shorter timeline and I think your opinion will be too affected by short term fluctuations in your symptoms which happen in any case. Don’t get too down when you have a relapse, these are normal occurrences in MAV and they all pass eventually, even if you feel worse for 3 weeks, they will eventually go and you’ll be back to your original trend.

So:

Physical clues - six months ago did you get stronger vertigo, was your imbalance worse, were you in bed more, did you generally have more vestibular attacks (imho these are not ‘cured’ by meds, but when they occur the meds reduce the symptoms and make them less uncomfortable). Is your tinnitus less bothersome, is it quieter, do you get any periods of respite from it now, or do you get more periods of respite? Did you experience spinning more, was it stronger?

Mental clues - six months ago did you have more negative thoughts, were you less optimistic, how much time did you devote to thinking about your illness then versus now? Were you more anxious, depressed perhaps? Did your stomach churn more? Is it still doing that? When a vestibular attack hits, are you more calm now?

Social clues - six months ago did you go out as much as you do today? Did you mix with as many friends six months ago? Did you spend any evening out where you almost didn’t think about your condition at all as you were sufficiently distracted by the social goings on? Does that happen now, does that happen more often? etc.

Take pride and solace in all improvements in these three areas and realise that you are, in fact, getting better if you are making progress in any one of them.

On this analysis I can tell you that I am definitely getting better, but its a very slow drawn out process. If you are new to MAV please be patient because I believe whilst getting better is very possible, it can take far longer than anyone expects to get over an illness. This is the first and only truly impactful chronic condition I’ve had. Sure, I’ve had a dodgy knee for a couple of years, I’ve had a stiff back and neck for a bit, but nothing that would compare to MAV. It is certainly not like a broken leg and definitely not like flu or a cold.

Now, it IS possible you are not getting better, but I believe that period will end. In my experience and from what i’ve read on this board, MAV has a crescendo, a point at which the worst hell is reached, and after that point, its all downhill from there, if downhill is a very strong word for a very slight incline that almost a ball wouldn’t roll down: yet it still does roll!

Just my collection of thoughts for today, reflecting on my 1.5 years with this awful thing.

Wish you all the best,

James

4 Likes
2

Great post, James!

3

thanks Beth! Hope it helps someone.

1 Like
4

gosh how do you explain this mmmmmm the only way I could describe me getting better last time was that I grew stronger and tougher than mav and didn’t let it beat me then all of a sudden I looked back and thought wow ive been better a long while and not realised as I chose to ignore my mini spins,shitty vision,tinnitus and the odd headache which I would pop an ibuprofen for :slight_smile: it seemed like a bad dream for a few years!

1 Like
5

not realising you’ve recovered and just getting on with life is probably the BEST way Mellybob, well done!!!

1 Like
6

it certainly was, I went to work got pissed at weekends,sulked all day on a sunday with a hangover then started again Monday with my usual routine,it worked it REALLY WORKED! stay positive everyone and do what you can when you can :slight_smile:

1 Like
7

Thank you so much for this post James! Do you also provide a time machine? So you can fast forward me 6 months? That would be great!!!

Although I am just at the beginning of my search for a cure…I am trying to keep the faith I will feel better in about 6 months. I have been battling for almost 2 years so another half a year I will survive too. Let’s just hope that I am on the right track now.

Thanks again and I wish everyone a half year recovery!! Or sooner ofcourse ;-).

8

Don’t know if its just me, but finding the right med helped clear the fog that existed in front of recovery. I’m not sure if they ultimately speed recovery, save making you less anxious which may be one barrier to recovery (in my case I hypothesise that anxiety worsens the pressure in your ear kind of like when you are stressed you feel mildly dizzy even when healthy). Instead I think they allow you to observe the changes in your body more easily. I found the meds helped me observe my symptoms and not suffer them so much. Wish I had a time machine too, but actually its amazing how fast time flies and I’m WAAAAAY better now than 1 year ago!

2 Likes
9

can anyone please tell me ( those that have noticed improvements) what symptom was your worst? and what symptoms went away first in order and which ones you are still left with??? im curious!

10

James,

I love this post! Sometimes its is nearly impossible to see progress. This is a great way to look at it! Thank you!

11

Pleasure. And yes it is! But it does happen. Keep the faith.

12

Mellybob I no longer get two symptoms that I’ve had regardless of medication:

  • changing imbalance depending on day
  • sloshing/squishing fluid feeling near or at ear when moving jaw

Did you ever get the latter?

Meds almost eradicated:

  • nausea
  • soft floor feeling
  • dizziness

I’m still left with tinnitus, occasional ear pain and very mild vertigo on occasion but all those have been diminishing over time.