it's been 6 years, struggling to cope.

Ears, nose and throat
1

My first attack hit when I was 14, 5 years of vertigo, progressive tinnitus and days spent in bed immobile passed and I finally got a diagnosis, menieres.

I'm 20 now, I can't drive or hold down a job, leaving the house is just too much of a risk. Yesterday I had a terrible attack in the middle of my towns busiest street street. It was horrible. I felt helpless and humiliated and noone offered to help.

Ive been given hearing aids for both ears although my left seems to be the worst. They also started me on SERCS About a year ago.

The only thing that the SERCS do for me is give me excruciating head aches that are almost as debilitating as the vertigo attacks.

When I told my doc about the headaches he simply told me that that was normal and dismissed me.

So I suffer about 10 attacks a week, 3 or 4 of them are severe and I don't recover fully for at least 2 days, the others are small rushes of vertigo that basically cause panic attacks because I'm terrified that they will turn into a severe attack.

The tinnitus I experience is LOUD I've had to learn to lip read and even with hearing aids I miss half of what's going on because all I can hear is the rushing.

It's getting to be too much for me now, I'm missing social events, I'm struggling in university and I can't keep a job because I have to take too many days off so financially I'm struggling too.

I'm looking for any advice, any treatment I can ask my doctor for or any simple tips for coping with this. It's really starting to affect my already fragile mental health.

Thanks

2

Dear erinj i was so sorry to read your post you are far to young to be suffeing like this  firstly have you been sent to see an ENT consultant  if not why not  this will tell you if it is menieres.you can be given pills for the panic attacks also the sickness.I use travel bands on each of my wrist this helps with the sickness and vertigo.if you need to chat to a very nice group on line Face book has  a group   just type in Menieres uk  we are a very friendly group who are all suffering from this horrid disease 

3

Thanks for the kind words smile I will definitely have a look for the Facebook group, I could really use the support.

I have been to see an ENT doctor but he is very flippant and was really reluctant to diagnose me with meniere.  Thinking it was maybe a migraine but after months of recording my attacks and avoiding all migraine triggers he finally decided that it must me menieres because I fit every symptom. He briefly mentioned a surgery but he never explained and even though he knows how bad my hearing is he insists on talking to me without looking at me. 

I was looking into pills for the panic attacks and I've been prescribed a few different anti anxiety /anti depressants but I have read that these are likely to make the vertigo worse.

4

Dear erinji

Migrain can go hand in hand with menieres  .you can ask to see a new ENT man .

you will read on Face book so many post that you can relate to  i am 67 so a lot lot older than you but iv had this Menieres for about 7 years .also stress plays a huge part in menieres as well

5

I feel so sorry for you. You're certainly suffering a lot of attacks at the minute. Are you this bad all the time? I've had menieres for 3 years now and can usually go for 3-4 months with nothing and lead a relatively normal life. Then the attacks kick in again for a few weeks. I've been really bad since the beginning of January, having attacks daily and am off work at the minute because I can't cope with working. I am on 4 types of medication and have been told they won't consider surgery at the minute. For you I would certainly ask about surgery. Read up about gentamicin injections into the ear or grommet insertion. I have heard that either of these can stop attacks for up to a year. It's certainly worth asking about. Good luck and much sympathy to you. Menieres is such an awful illness

6

Hi smile yeah I get it very badly for ages then it becomes less frequent but no less severe for a month max then bam it's back again.

Odd that you say that, my worst ever spell of attacks happened January 2 years ago, last year in January it got really bad and again this year. Has anyone considered the possibility that it may get worse when we would normally get ill?

It's horrible missing commitments because of this, the unpredictability is the worst part.

I read into the injection I think I may push for that as, for obvious reasons, I really don't want surgery, but the NHS just seems to only want to push pills. Maybe I'm not incessant enough but I'm going to ask him and I bet he tells me to stick with these horrible pills. Doctors that don't listen.

Thank you for the reply and the support, it's all been getting to be a bit much.

7

A lot of folk say the weather  brings on attacks ,,ie very dull days ,thunder does it for me ,dont be fobbed of by your gp or ent  they must listen to you

8

I'm so sorry to hear how you are suffering! Have you been prescribed any water tablets? It sounds too simple but they honestly changed my life when I started taking them. Stopped the vertigo and nausea dead. The tinnitus is harder, have you seen a consultant? Mine told me there are some treatments nowadays but I haven't explored them because I'm so used to my tinnitus I can mostly tune it out. I hope you feel better soon. Please ask your dr about the h20 tablets. The first one I asked said it was an old wives tale. The second one said that there were some very encouraging results from the treatment!

9

water tablets... ive not heard of that, I know a few tablets will change your water retention levels in order to reduce the pressure on the inner ear. I have seen a consultant about the tinnitus but they pretty much told me that they dont have any treatment except the hearing aids and the betahistine.

10

I started off on 8mg Betahistine a couple of years ago. I now take 16mg Betahistine 3 times a day and a water tablet each morning. I must say, I personally haven't noticed any improvement since starting the water tablets last year. I've got Buccastem tablets for sickness, and recently have been prescribed diazepam to take when an attack starts as it's supposed to lessen the effects! So 4 lots of prescriptions to pay for and still get the attacks!!!

11

I'm on 32mg betahistine (not Serc which in ny opinion not the same) x3 times a day plus 1 water tablet each morning. Had grommet in left ear last july with a steroid dextramethasone injected into it (under general) then Dec I had a further steroid injected (same one) in theatre but awake and was quick and virtually painless. I keep away from noise as much as I can, hardly any alcohol if I do it's a low % and small amount. Download the book Vertigo Vertigo by Meniere Man, very good advice in there. Touch wood I've been spin free since September. You need more help than you're getting, please start pushing for more help x

12

Dear erinj, sorry to hear of your condition. I understand the difficulties to deal 2 fronts of this Menieres. The dizziness that comes suddenly and the hearing lost.

My dizziness is not often now but I am not so stable when i walk as I tend to feel groggy. However my hearing is also really poor. I wear hearing aids boths sides and am freightened by clicking or sharper sound which I hear exceptionally clear. Apart from that I struggle to hear a conversation due to the distortion in voices and really scared of loud places whereby it is a contant noise of hissing and distortion (I guess that's what mean by rushing).  Medically I am on 24mg x 3 of Betahistine per day and taking a water pill each morning. The ENT can't seem to offer more that these 2 prescriptions. Work wise I too stuggle, as I had to scale down my work load due to hearing loss and being unable to drive. Employer was understanding but is becoming rather hard as they consider myself to be less productive. Hang in there, and press the doctors for more options. 

13

Hi Erinj,

I have had MD for about seven years, and it had calmed right down until last October when it came back.  I had an eye op at Christmas and this seemed to trigger even worse attacks, up to two out of three days being some kind of dizzy, one out of three with totally immobilising throwing up dizziness.  I was sent to see the Consultant locally, who was too busy dictating to see me himself so I saw his registrar, who prescribed betahistine for three months.  I was given both that and serc by the chemist and persevered for five weeks with no change, in fact I seemed to get worse.

I saw my GP in tears, absolutely thrown by the attacks and their severity, unable, just like you, to do anything.  She'd given me the stemetil injections that my DH gives me in extremis, I was that bad, and they were shortening the attacks to a couple of bad hours, but that was all.  I also had stemetil pills and buccastem.

Serc is a HISTAMINE, which shouldn't have been given to me because I am asthmatic, which the registrar didn't even ask me, I read it in the in pack info later. 

My GP prescribed me CINNARIZINE, better known as STUGERON, 15mg tablets, two tablets three times a day.  You can buy this over the counter, I gathered, just for travel sickness.  It worked IMMEDIATELY, and I am so much better.  I'm still getting attacks, but they are completely different.  I am assuming that they are when I would be getting an immobilising attack.  I can stay upright, I can walk to the loo, I don't even feel sick and the injection works in about ten minutes.  Brilliant!  It is an antihistamine, which I feel much safer taking.

I'm also on ONDANSETRON, which my GP has for a bad reaction to anaesthetics, 4mg twice a day, and she thinks the combination is working for me.

I've gone down to 4 days out of ten feeling dizzy in some way, and only one in nine having an attack that might once have been immobilising.  And it isn't now.

I had one on Friday in a pizza restaurant, and my DH and I sneaked to the loo and he gave me the injection, and within ten minutes I was eating my pizza and no ill effects.

The moral of this story is that there are other treatments, and apparently histamines work for only some people, and antihistamines for others, so maybe you are one of the ones that needs the latter.  Push your GP for it.

My DH thinks they all prescribe the serc because it is to do with funding from the company.  Money is behind it.  Could be.

I went back to the consultant after only two months and saw a different registrar again, and she was most insulted that I wasn't on serc and tried to get me back on it, insisting that Cinnarizine etc is not given for MD, yet when I googled it, it was its primary use - balance disorders such as MD!

She hated being over ruled, but I flatly refused to change.  she said I might become "dependent" on it, but what is serc but a dependency?  Silly cow.

F

14

hi!! i know how you feel i really do. Im 26, i started showing signs of menieres at 3 and went through years of pure and simple hell. i was eventually diagnoised at 12 and put on betahistine tablets, a low salt, sodium and caffine diet (which believe me helps a million percent!!!) and sent to see physio specialists to help me.

I to am never allowed to drive - ever. if i turn my head i trigger an attack, but the physios do there best to help you with it. it can take years to help but its worth it. before i went to physio i couldnt move my eyes to look at anything or nodd/shake my head because 1 it triggered an attack and 2 i was so scared to because it would trigger an attack. As a teenager i missed about 4 out of 5 days of school a week because of the vertigo or the hearing or constant ear infections or just because the stress of the disease made me so scarred to leave the house. Unfortunetly though you have to find a way yourself of pushing yourself out that front door, no one can gear you up for it but yourself. I know how you feel about being in town and people not helping or judging. I used to scream when i would have an attack outside, because of the seer fear of it. Strange i know but i had this horrible thought that i would just fall into the sky and keep falling because i couldnt feel where on earth i was, which way was up etc. I had a job for 6 years (still suffering with menieres) but i gave it up when i had my baby. 

One thing i do know about this condition is the more stress you have the more severe it becomes. 

What i suggest is....

1) ask to be sent to a vestibular Physiotherapist (you may have to travel. at first i was sent 80miles away to see mine). They also told me to take up either karate or yoga to help improve my balance. sounds daft i know but it worked, after a year of karate i could finally balance on one leg for2 minutes aha!!!

2) I have heard, not sure if its true, that serc is used to make you think its helping you, like a fake tablet if that makes sence. but apparently betahistine is the real medication to take, thats what im on. but like i said i really dont know if thats fact but seeing as that is the only tablet you are on its worth questioning with your doctor.

3) Ask to start a low sodium, salt and caffine diet (the sodium is just as important as the salt). it really really really works!!! but only start that with your doctors permission.

4) apply for DLA, go to your local council and ask someone to fill it in with you. i applied but because i filled it out myself it was denied- even though i gave them full doctors reports as proof. it can be as little as £80 per month or more.

5) I dont know if this is the same in every area but in the part of the country where i live i applied for a disabily bus pass as im deeemed to dangerous to drive. I now have free travel around the whole of the uk (excluding central london etc obviously). but its helps with the anxiety of travelling because you know you can get places without walking and it will help financially to.

6) Ask to see a Cognitive behavioural therapist, they help with anxiety and depression of the condition. they pick upon the smallest of things that you do (that you may not even have noticed) and they give you ways of helping yourself deal with situations that menieres puts you in.

7) i have found that when i have an attack the best way to get over it quicker is- to sit completly still,look at one spot and focus on it, when your eyes roll off because of the dizzyness pull them back to that spot, have something familar on the tv etc to calm you, never use head phones, dont watch films etc with fast moving pictures (that have senes that flick quickly from one shot to another)

Thats all i can think of for the moment, please let me know how you get on

Try and keep positive, x

15

Hi Erin

Just came across your discussion.  As it's been a while since your first post, I'm wondering if you have had any improvement since.  You are so young and something needs to be done to improve your quality of life.  I too suffer from vertigo and tennitus as well as migraine and know how bad it is to live with.

Nearly five years ago my vertigo was so bad I ended up in hospital and was unable to drive for two years.  At one stage I couldn't go out on my own and couldn't shop in the supermarket as I felt I was falling. I was referred to a physiotherapist who gave me exercises to get my balance back and, although I am not cured, my symptoms have slowly improved and am back driving again. It may not work for you but it may be worth you getting a referral to see a physio. 

I have a permanent high pitched ringing in my ears as well as a constant vibrating noise in the back of my head but was not diagnosed with menieres.  It is difficult to fall asleep because of the noises.  Years ago when this started I thought I was imagining it and wondered whether I was going mad.  Your symptoms sound so much more severe and I do hope you get the help you deserve.

Best wishes