meniere

Author Topic: At last folk that understand... just diagnosed  (Read 1949 times)

Offline bluejay

  • Visitor
  • *
  • Posts: 9
    • View Profile
At last folk that understand... just diagnosed
« on: Sep 08 2011, 12:22 PM »
Hello all

Just diagnosed yesterday with menieres so hopefully can now get some help instead of people thinking I am making it up! sure you all know what i mean.

Forum looks good and looking forward to chatting and getting some helpfull tips from people in the know.

Best wishes
Bluejay



Offline kek33

  • Member
  • ***
  • Posts: 35
  • Gender: Female
  • Try to stay positive and calm
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #1 on: Sep 08 2011, 02:40 PM »
Hi,

I am new on here as well but am finding it a great help talking to people who know what its like to have menieres.  I have only recently been diagnosed but think I have had it for well over 5 years.  What symptoms do you have

Kate

Offline bluejay

  • Visitor
  • *
  • Posts: 9
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #2 on: Sep 08 2011, 03:02 PM »
Hi Kate

Thanks for reply,

Sorry you have had menieres for 5 years, I am just getting up to 2, that is how long it has taken to get a diagnosis, I was sent down the neuro and MS route first, and lots of others in between before finally getting to ENT.

Symptoms are daily dizzies, no balance walk into door frames etc, wobbly eyes, REAL BAD VERTIGO now and again, just generally feel rubbish, had to go part time at work.

How about you how you managing?

Jay




Offline kek33

  • Member
  • ***
  • Posts: 35
  • Gender: Female
  • Try to stay positive and calm
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #3 on: Sep 09 2011, 01:51 PM »
Hi Jay,

Well today is a good day, not really a sign of the dizzies yet which is so unusual it actually makes me think there is something else wrong ha ha.  I don't really know what to make of this illness to be fair, I have such a lot of odd symptoms its hard to get people to understand.  I actually try not to talk about it to much as I think people think I am a little strange!!  I think the worst thing is how much is makes you change your life, but i am trying to be more positive and do the things I used to do when I can.

Hope your feeling OK

Kate   ;D :D

Offline Paula

  • Senior member
  • ****
  • Posts: 268
  • Gender: Female
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #4 on: Sep 09 2011, 02:18 PM »
Hello to both of you

Sorry you have had to find us but glad you have.

Lots of lovely people on here with loads of knowledge so feel free to ask anything you like, no matter how strange you think it sounds.

Welcome.

Paula xx

Offline kek33

  • Member
  • ***
  • Posts: 35
  • Gender: Female
  • Try to stay positive and calm
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #5 on: Sep 09 2011, 05:01 PM »
Thanks Paula it's nice to be able to talk to people that understand and not look at me like I'm completely mad. Have had a good day today so hopefully a good weekend is to follow.

Kate

Offline Emma

  • Moderator
  • *****
  • Posts: 1159
  • Gender: Female
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #6 on: Sep 10 2011, 09:26 AM »
Hello, welcome and I hope you get all of your questions answered! They are a good lot on here  8)
And well done on getting a diagnosis, I am 4 years in and still no official diagnosis grrrrr but I always think when you have a diagnosis at least you know what you are working towards xx
Be happy - Keep smiling :-D

Offline bluejay

  • Visitor
  • *
  • Posts: 9
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #7 on: Sep 11 2011, 05:48 PM »
THANKS FOR THE WELCOME

Good luck to all looking to get some sort of diagnosis, Emmas right at least when you know for sure what your dealing with, its got a name and now hopefully some help, made me feel much happier if thats the right word!

I was given betahistine 16mg and gabapentin 300mg 3 times a day, and noticed an improvement within a few days, hope its the meds and not just a coincidence.

Back to ENT in December after trial on meds.

Anyone else take gabapentin with betahistine, does it work?

Jay

Offline bluejay

  • Visitor
  • *
  • Posts: 9
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #8 on: Sep 11 2011, 06:15 PM »
Hi Kate

Well did it last, hope you managed a good weekend without the dizzies.

I know what you mean I always feel strange when I am NOT dizzy and am having a good day which is unusual, my test is can I stand on one leg (ha ha)  looks very odd when Im making my cup of tea in the morning trying to balance on one leg and closing my eyes if Im really brave. The more I wobble the worse the day will be!

Do you get any warning signs?

Jay







Offline kek33

  • Member
  • ***
  • Posts: 35
  • Gender: Female
  • Try to stay positive and calm
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #9 on: Sep 11 2011, 09:05 PM »
Hi Jay,

 Well yesterday was good but went on a hen night last night so went to bed late and had a couple of drinks so today has not been good. I tend to know when I wake up how I'll be but it can just come on all of a sudden like in a shop or if I'm standing talking to someone. I always hold my chin or lean on something when talking to people so everyone must think I am very strange.

Have you had a good weekend and hopefully this week won't be to bad

Kate
 

Offline APMD

  • Visitor
  • *
  • Posts: 2
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #10 on: Sep 15 2011, 08:53 AM »
Hey, I've was diagnosed about 6 months ago and it has really buggered up my life as I was in the middle of my second year at University plus my nephew had only just turned one. My doc said I was pretty young for it (I turn 21 at the end of the year) but two others in my family (aunt and uncle) have it so at least I know others that can help in my family directly.So far i've had really bad dizzy spells (enough to make me have to sit down), tittinus on and off and my hearings all of kilter but the feeling of fullness only creeps in now and again.

Looking forward to getting some tips on how to cope plus chatting to others about it.

APMD

Offline Tillypup

  • Visitor
  • *
  • Posts: 4
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #11 on: Sep 15 2011, 11:30 AM »
Hi!

I'm also newly diagnosed a few months ago after suffering from this for 4 years - I'm 24 so also quite young to get it!

My advice is research everything, try everything and don't be afraid to talk to people. I'm feeling much better already just knowing there are others out there going through the same.

I've been prescribed betahistine too but not sure what it's really doing yet! Will keep you updated :)

Kyla

Offline Emma

  • Moderator
  • *****
  • Posts: 1159
  • Gender: Female
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #12 on: Sep 15 2011, 01:19 PM »
Hi welcome both, I don't think age is an issue with MD - I think the research all suggests it is not something which effects people till they are 40+ but there are many younger suffers here (I am 27 and have had this for 4 years too)

Betahistine can take a few weeks to take full effect so stick with it!

Keep us updated both and welcome again.
Emma xx
Be happy - Keep smiling :-D

Offline SJ

  • Moderator
  • *****
  • Posts: 633
  • Gender: Female
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #13 on: Sep 15 2011, 02:47 PM »
Welcome everyone!!  ;)

You have come to the right place for support,advice, laughs or even a good ole moan!! I hope you get as much from the forum as I do, look forward to chatting to you all,

Take care

SJx

Offline bluejay

  • Visitor
  • *
  • Posts: 9
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #14 on: Sep 15 2011, 08:33 PM »
WOW

Thanks folk for all the replies, not just me then! Hope you are all well.

Looks like we all start off in the betahistine club, I have noticed a bit of improvement but not enough, still walk like a drunk and getting the dizzies again, GP referred me back to neuro as well as ENT this should be interesting!

Just about sick of being passed from pillar to post and need this bl&&dy thing to stop I dont think the medics understand how this affects your life and cant believe the only medication available is betahistine, then what?  think menieres needs a lot more  research to find a drug that works.

Does anyone else drop everything, dropped a yoghurt in the supermarket which splatted all up my leg, then dropped 4 bottles putting shopping away and then dropped the pan making pasta - what a pain, but the yoghurt was funny!  Seems to only happen when having a dizzy spell.        JayXx

Offline kek33

  • Member
  • ***
  • Posts: 35
  • Gender: Female
  • Try to stay positive and calm
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #15 on: Sep 16 2011, 07:12 AM »
Hi Jay

I drop everything, my kids are always embarrassed in shops because I drop everything all the time

Offline shell

  • Senior member
  • ****
  • Posts: 232
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #16 on: Sep 16 2011, 02:58 PM »
I drop and knock off stuff all the time,worse mess was dropped raw egg on entrance carpet at work.

Offline bluejay

  • Visitor
  • *
  • Posts: 9
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #17 on: Sep 18 2011, 05:37 PM »
Hi Kate and Shell

Well done it again today at work dropped my best tea mug in the washing up bowl -  big chip so now in bin seriously considering buying plastic, cant remember how many glasses I have broken!

Could have been worse at least it wasn't an egg!

Jay




 
 


Offline kek33

  • Member
  • ***
  • Posts: 35
  • Gender: Female
  • Try to stay positive and calm
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #18 on: Sep 18 2011, 05:59 PM »
Yes my glass collection is running very low ha ha. Ketchup is another horrible one to clear up!!

Offline Emma

  • Moderator
  • *****
  • Posts: 1159
  • Gender: Female
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #19 on: Sep 18 2011, 06:34 PM »
I somehow managed to drop an open tin of pineapple into the fridge! Pineapple and pineapple juice all over the fridge and some on the floor too... xx
Be happy - Keep smiling :-D

Offline Gidge

  • Senior member
  • ****
  • Posts: 196
  • Gender: Female
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #20 on: Sep 18 2011, 07:28 PM »
I thought I was  just losing my grip.................... 8)

Gill
Onwards and upwards !  (Spins permitting.........)

Offline bluejay

  • Visitor
  • *
  • Posts: 9
    • View Profile
Re: At last folk that understand... just diagnosed
« Reply #21 on: Sep 21 2011, 07:37 PM »
Hi Gill

Ha Ha

Definately Lost My Grip long before all this cr&ppy menieres, good job really!

all the best
Jay