Ménière’s - altering my whole life

Ito. I feel for you mate! My experience is somewhat similar. It is distressing. anxiety producing and real. It is hard to explain to people how one feels and the impact it has on life. I have also stopped driving for fear I may have a Vertigo attack behind the wheel and cause damage to people and property. My life is much more limited and can only do what I do because of the support of friends and family. I try to cope on a day to day basis, I have yet to find a cure and thus try to improve my situation with good diet, exercise, and meditation. Does it help? I don't know, I do feel better that I am doing something. Good luck with your recovery.

Hi Lto, i understand very much what you are going through...i have had Menieres/Vertigo for 5 years now, my Menieres has been the same as your's now for 4 mths, can't do anything, i have also been off work now 4mths. Just been to see Consultant to arrange now to get Steroid injection....if this does work they will then operate to kill the ear....sound a bit dramatic but what this does is shut down the balance on 1 of your ears.......just a quick message to say some people do understand but only the 1's that suffer with this condition, everyone else looks at you and thinks that you look fine so you are fine....but we know different

Good Luck

Steve

Hello

I can totally relate to what you are saying, I have had this condition for over 20 years, and it is the most debilitating condition, like you I find it difficult, I now take cabs to/from work, just so that I feel safe. I do enjoy having this forum with like minded people who understand what I am going through. Vent away, It makes me feel better just talking about it to others.

Take care

I suffer with anxiety and panic attacks, it is so so distressing.

It is a shame it has taken so long to get the diagnosis but at least you are now on the right drug to help. Betahistine takes at least a month to be fully effective provided the dose is high enough. I was started on the max recommended in the BNF - 16mg tds - which helped but did not stop acute attacks! When I got to the right consultant he tripled the dose to 48mg three times daily which did the trick and I had 21 months without symptoms apart from residual hearing loss and background tinnitus. When the warning signs of the problem returning happened (ear fullness, unstable tinnitus and mini dizzy spells) as advised I went straight back on 48mg tds and raised it to 64 mg as I had an isolated vertigo attack. Again symptoms fully under control and have now been in remission for a further 14 months.

Statistically 70% of sufferers recover so stay positive.

Delegate as much as you can to your work colleagues to ease the pressure.

Good luck.

Hi Ito,

Firstly, my sincere empathy with your emotions, I have been through this whole ordeal 16 times with an ENT (who is a friend) audiologists, MRI and EAN etc. etc. I too was a retailer managing many stores.

Until I was referred to a Neurologist, I was exactly in the same boat as you. He did nothing for my MD, but literally saved my life, in that he showed me how to deal with my brain, almost trick it into thinking I was fine. He then showed me how the neurons fired in the hypothalamus and because of my thinking it created more anxiety and panic attacks. It's a long story, but I want to share just a few things to get you to work and be good at it.

1. See that ENT get his/her advice which will help knowing that you have had the medical advice. In my humble opinion ask the ENT to increase the intake of betahistine just for a month and then come totally off it. 

2. Do away with salt, smoking, caffeine, chocolates and any other triggers which you will know by now.

3. Eat only vegetables and fruit for 2 weeks (stick it out) and then go back to your normal eating habits, but moderation if possible.

4. Panic attacks do not exist, its all in the mind, all panic attacks eventually go away so you might as well make them go away earlier. You need to research this and find your own method, I have learnt to breathe correctly and also meditate anxiety away - trick your brain.

5. Keep your Eustation tube clear all the time (research it)

You can do this my friend, not only go to work but enjoy the ride getting there, the only medication you might need at hand is something that helps nausea - take it if you feel something ain't feeling right.

You can control where you are now, you can control where you are now, you can control............

Much love and strength - go well.

Hiya your not crazy at all I've had it for 43years it's a horrible disease and unless people you know suffer with it they have no idea what you are going through I hope you are feeling better soon

Hey Ito

Just went through the notes again of dealing with panic attacks and thought this might help. If you have a panic attack and you use logic, reason, distraction or common sense to suppress it to go away, you make it 10x worse and it is called the "panic paradox''. When the brain picks up an emotion, thought, distress signal it goes into safety mode and releases chemicals to deal with the symptom, in particular adrenalin and the cycle it takes, is when you have more anxiety through thought it releases bigger doses - its a vicious circle. The doctors sometime prescribe a mild relaxant to deal with this, but this is also wrong.Because panic is counter- intuitive, the psychologist, who also taught me to meditate, taught me to go into a meditative position during a panic attack and visualize the panic attack as getting far worse than I was experiencing (tricking the brain) - this might sound crazy, but it worked for me. I do not have fear of closed spaces, vertigo attacks or sleep apnea anymore.

In any case this worked for me and thought would share as just saying I was tricking my brain and not explaining this does not help.

Go well.

Sorry to hear how you are feeling...YOU ARE NOT GOING CRAZY, I think because we look ok, no one seems to understand. Then there are so many different symptoms and how meniere's affects are different for everyone. it's difficult to explain how you are feeling to people who do not understand meniere's.

I was diagnosed 9 years myself and it's only been since July that my family understand my problems.

Menieres is listed on the uk governments disability rights. There's many out here who know what you're going through. All best wishes

It sounds like an anxiety med might help. MD is so hard for those not living it to understand. Stress can make it worse and we know MD causes stress, so it's a vicious circle. Hang in there and think good thoughts! Oh, I've had this for over 20 years so think I'm an expert, ha, ha!

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