Bring on the Heels

Specific Illnesses & Conditions VM/MAV
#1

So after 2 years of hell…

The sudden onset of chronic, persistent vertigo.
The battle with my GP’s and consultants to listen to me
The memory loss
The misdiagnosis: BPPV, Laybrinthitus, waiting to find out if I had MS or a tumour
That sinking feeling when you realise you may need to give up work
Not being able to play with my kids
The battle with Topiramate
Feeling 67 not 37
and the worst of all… having to give up my 4 inch heels for flats…

I’M BACK!!!

The heels are back on ladies, yes I may not quite be confident enough to use the stairs yet and have the occasional wobble, but I am proudly tottering around work feeling a lot taller than the extra 4 inches the heels have given me!!

Who know how long they’ll stay on but for once I am steady enough to stand on a little less than my own two feet :smiley:

Celebrate with me ladies, one day it might be you too :lol:

#2

Hi jor - what a lovely post! Welcome those heels back in!!!
So tell us how are you know % wise , it’s what we all want to know! I’m almost 18 months in myself , not sure if this statement is correct but I believe that most see an improvement around the 2 year mark?
X

#3

Hi Anna

I am just over 2 years. Honestly, though I hate to admit it, the turning point for me was the topiramate. I had about 6 weeks of relief in the early days but then the side effects over whelmed me. MY GP didn’t understand the meds or MAV, and just kept increasing my dose whenever I complained I was unwell, I ended up in hospital with the side effects, couldn’t see, breathe properly just awful. So I decided to bring myself off it altogether and not go on anything else. Rather the illness than being poisoned (as it felt). I was prepared to give up my job, my life almost rather than stay on the meds.

So I don’t know if it was that final act of giving in to it, accepting “I have this and I always will” and stopping fighting everyday, or if that 6 months on the meds had reduced the severity.

I don’t fight now, if I need to be in bed at 8pm, thats when I go to bed. I never have more than 1 glass of wine and have given up Red altogether :cry: , I wont plan more than 1 activity in a weekend. When I feel my head start to go I stop what I am doing and rest. That act of surrender almost, seems to have given me so much more well-health than all my fighting did!!

Anyway, percent wise, lets say an average of 80% well ( though once a month I feel about 2%!)

Hope you turn the corner soon, don’t fight it it’s as much a part of you as the breath you breathe, but DON’T GIVE IN, you can get your heels back :smiley:

#4

I tried putting my heals back on…once. Great night!

But nowadays any heal of any kind triggers a migraine. I just can’t hold my balance like I used to (obviously) so I’m straining my body to be upright and I feel exhausted doing it! Plus I already feel “off” without heals, adding an extra inch or two and I feel like my head’s in the clouds, not a comfortable feeling… I’m sticking to flats until this whole mav ordeal has blown over completely… for safety more than anything.

Your list hit me pretty hard :frowning: I know we can all relate to loosing/fighting for those things. Add alcohol and caffeine on there for me too and most importantly - Congrats on giving them a shlap back on though and feeling more like your old self! Feminism feels good, doesn’t it!

#5

you go girl! :wink:
I can’t manage a proper heel but I find wedge type heels are still tolerable enough. I’m only 5’2 so it’s nice to be able to pull off a little height

#6

Thanks for the info Jor - I am just so pleased for you , it’s so hard to know what (if any) combination of drugs is going to be the answer then may be managing the symptoms yourself , well done you! It’s so great to see a positive post :).
I’m so sorry that you had to go through the awful experience with the drugs though

X

#7

Anna how’s it going. Is Dr S keeping you on 50mg nori? xx

#8

Congratulations on getting your heels back on!!! So jealous. One day I will.

Great post. Angela

#9

We’ll done! V pleased for you! I’m 1 year in now and 40% on my 5th med and glad to not be crawling around the floor when i was like 10% before.

Even tho I’ve improved? I wish I’d not taken the last 4 meds the side effects have been life changing and horrible!

I’ve done the diet and lifestyle for 8 months and still lost my job.What I’m on now is by fair my best med and this one actually helps and fingers crossed it suits me too!

But if this doesn’t work out I don’t know if I have strength to try another!?

Do you think Jor the biggest thing that helped you was acceptance? I have an internal battle everyday where I think
This is it, then I think no the tablets will work etc it gets pretty horrible? Maybe if I could accept I’d be more at peace and stop pushing myself to do things I can’t?

#10

Thanks ladies, it feels great (though don’t tell anyone I secretly keep a pair of pumps in my drawer!)

It is difficult to say whether it was the meds or the attitude. I still have MAV, I feel it everyday, I am not better but I am in no way as bad as I was.
The medication made me feel like I might as well be dying, I was truly rock bottom and just was ready to give up, there was no point to me anymore. I couldn’t cope before the meds and certainly couldn’t cope on them. I know it sounds melodramatic but its how I felt.

I’d always loved my life then one day I woke up and all of that was gone. Just like that someone flipped a switch in my life and took it away.

I couldn’t deal with it, and refused to change anything, wouldn’t even modify my diet.

But when I ended up in hospital because of my medication it cleared my mind. I had to come off the meds, and if that meant leaving work, loosing the house etc then that is what I would have to do and in truth it was liberating.

This is something you can’t fight, the more you fight the harder it becomes because the fighting itself makes it worse, if that makes sense.

It is so difficult to accept but accepting it doesn’t mean giving in. If you only had 1 leg you wouldn’t try to do the hurdles would you, if in a wheel chair would you try to climb the stairs?

I’m not saying that this acceptance makes it go away, but it’s got to help right? Take the pressure off yourself and things have to get easier?

I still contemplate trying other meds, I don’t want to give the impression that this is gone for me, I am still so low at my time of the month that I can barely stand and do wish I could live the life I used to, but whilst I can control it myself I will.

I hope you all get your heels back, but till you do celebrate the little things, a walk in the park, a night with friends whatever , I would love to hear about them.

Stay Calm, maybe you could try bereavement counselling, sounds silly but the path you go down accepting ill health is the same as accepting loss, your almost grieving for your old life. Really helped a friend of mine xxxx

PS sorry for such a long email :smiley:

xxxxxxx