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Meniere's Diary!

Read a real life, ongoing account of the up's and downs of living with this from before diagnsis until official diagnosis in 2007!
Scroll to the bottom to read from

1999! 2000-2001 , 2002-2003 , 2004-2006 (remission!?) 2007, 2008

12.9.10 - A few months on Topiramate and I have been feeling pretty good. A few close calls but they have not lasted more than a few days. But it feels the same as a good spell so I am not utterly convinced whether its the meds or a good spell. Only time will tell but I am hoping its the meds and the doc was right. Normal life is now continuing!!!!!!!!

31.5.10 - I saw a neurologist who was convinced my daily dizziness is migraine related not menieres related though the two have recognised links. I have started on a drug call Topiramate which if its going to help should take effect in about a month- one week in I have no change and am 50/50 about it - am I really so unlucky to have these two things going on together!

"Topiramate is used alone or with other medications to treat certain types of seizures in people who have epilepsy. Topiramate is also used with other medications to control seizures in people who have Lennox-Gastaut syndrome (a disorder that causes seizures and developmental delays). Topiramate is used to treat patients who continue to have seizures even when they take other anti-seizure medications. Topiramate is also used to prevent migraine headaches, but not to relieve the pain of migraine headaches when they occur. Topiramate is in a class of medications called anticonvulsants. It works by decreasing abnormal excitement in the brain."

28.4.10 - So no joy acupuncture. No joy Johns regime. The ENT has said although I still may have menieres, my daily problems are not being caused by this and they suggested vestibular migraine. Its far from the first time that I have heard this. Maybe now time to accept, menieres causes the episodic spins, migraine causes the daily fuzzy dizzy feelings!

I was referred to a neurologist who confirmed this yesterday. He was positive of this. Perhaps this explains why the Menieres treatments have not helped me in any way. I am frequently reading about the links between menieres and migraine. (Menieres sufferers are frequently migraine sufferers too). We are to start a course of treatment based on migraine. Topamax - a drug for epilepsy. Will keep you posted! Neuro said he was pretty sure we could find a treatment which would make it 50% better, by changing my perception of the sensations!

02.01.10 -I had all the balance tests repeated including a new test where electrdes are placed on the neck chest and face- these measure tension responses and they found my left side not to be working the same as the right in the part of the inner ear that is responsible for gravity sensation. It was suggested (again) that I may also be suffering from vestibular migraine which is a more likely cause for the permenant dizzies. They are considering treatment as the menieres treatments have not helped. People with vestibular migraine often have menieres as well according to the audiologist.

09.12.09 -7th week of acupuncture. Zero improvement. 5th week of chinese herbal medicne. Zero improvement. So I have now stopped both. May consider chiropractic next!

18.11.09 - that herbal tea - yuk! no improvement still. Dr Kang said the acupuncture should have started to work. At the end of the session today I had the ear candles. My advice, don't bother with them. If you do a bit of research they don't do anything!

11.11.09 - 3rd session of acupuncture today, it is very relaxing as mad as it seems having someone poking needles into you. Last week I was also given some herbal tablets to strengthen the kidneys and reduce tinnitus - in chinese medicine the kidneys are responsible for dizziness. I have also been taking the supplements as described below. Despite attacking it from all aspects I am still extremely dizzy ALL THE TIME. From the moment I wake up in bed and feel the swaying to the time I go to sleep for temporary relief from it. I have paid for 7 acupuncture sessions and today I was given some herbs to boil and simmer, then drink the juice twice a day. £28 thank you very much for one week. If it works I don't care but so far the cost of these alternative medicines is mounting up and I am not one iota better.

30.10.09 - Acupuncture yesterday. The fella knew exactly what menieres disease is. He speaks pidgeon english but pointed to a picture of the inner ear semi circular canals and said inflamation. Don't feel any better for it today, though it was relaxing at the time. Will keep you posted on any improvements.

28.10.09 - I have been extremely vertiginous of late and it has spurred me to try acupuncture again. I first tried acupuncture 10 years ago and can recall at most it helped relax me. But I have prepaid for six sessions and am willing to give anything a try. A friend of mine has tried one of the supplement programs which are often raved about. A big cynic myself but desperation means I am trying them! http://www.menieresfoundation.org/johnsregimen.htm for the details.

17.10.09 - The conference had some interesting discussion, the main item being the promosing trial of steroid injections, similar to gentamicin injections. Results will be a few years.

16.10.09- Going to Menieres Society conference& AGM tomorrow , what are the chances of them announcing a new cure!

13.10.09 - Still on the merrygo round. A couple of days where I start to feel a bit better then bam, like this fluttering in my ear, sudden adrenaline rush and feeling that I could drop to the ground. Currently feeling like gravity wants to pull me to the floor. NO QUALITY OF LIFE right now :(

28.9.09 - Well six months of being right as rain, then a collection of mini spins has left me back to the 24/7 dizzies. Normal people..... Imagine going on a fairground ride that is spinning round and spinning and spinning. Then it stops. That is my head 24/7. Eyes can see it is still yet I feel like I am still on the ride. I have to focus all the time so that it doesnt get the better of me. So I am back to needing sleep sleep sleep. You always know when I am doing ok because the diary goes quiet! You dont feel the need to moan when you are well! I am going on holiday in one week, if it could just be half as bad so I can try and enjoy it, coz right now it feels more like a pressure that I am going with the worry of feeling so ill and yukky so far from home!

27.03.09 - Done dusted! To think on Thursday I was in bed all spinny, Sunday I am running 13.1 miles! See my pics Raised £275 so far not bad for one weeks work as I left it to the last minute to ask people!!

21.03.09 - EEk where did the last 2 months go! Sorry! Its been mainly good but last few weeks some serious dizziness stuff . Am running the Reading half marathon this month for menieres society, feeling generous? http://www.justgiving.com/alextye

01.01.09 -
The good news is that things calmed down again after the below. The bad news is after another vertigo shock, again at my desk at work, I've been pretty wobbly and very swimmy. Managing to carry on as always but hopfully these feelings are becoming more classic in their episodic nature!

25.11.08 - Well the "good months" are over. Plenty of residual dizziness, a short episode of vertigo while sat at my desk at work (though no one noticed!) . They certainly werent fibbing when they said there would be periods of remission but pessimistically all remissions are followed by non remission!

30.10.08 - I've recieved a letter from the DVLA saying that as I havent had a disabling attack within the last 3 months my licence can continue. Interestingly they say "The law forbids the issue of a driving licence to drivers who have a liability to sudden attacks of disabling giddiness. Therefore, the standards of fitnes to drive ordinary vehicles require drivers, who have suffered attacks of disabling giddiness/dizziness which occur without warning, to be free of such attacks for three months before resuming driving. If in the future, disabling attacks occur without warning, you must inform the DVLA."

14.10.08 - I've recieved my DVLA stuff! There were 6 pages

Pages 1 & 2
"What you need to do" and "What will happen next"....basically a letter explaining that I had 21 days to consent and complete questionairre. Failure to complete could result in loss of licence.

Pages 3 & 4
Consent forms and declaration (4 is blank)

Pages 5 & 6
Medical Fitness to Drive. Questionairre "DIZI" asking for GP/Specialist details

See the forms.

  • Microsoft WORD here (311kb)
  • PDF / Adobe Acrobat here (973kb)

08.10.08 - I've been up and down but mainly ups hence 5 months of silence!! No vertigo in months. I have gotten around to informing the DVLA of my condition which I should have done ages ago! Though I am not driving these days as I don't own a car anyway. I will keep you posted of the process! I emailed them today so lets see what happens! Grommet is getting on my nerves!

24.05.08 - I've had quite a lot of good spells lately! I'm even planning to go to London today and have had a couple of breaks away! Whats the betting it doesn't stay like this!

12.05.08 - Bloody grommet! The tests showed I had good balance function on both sides but they explained this was good news as there was balance to destroy to get rid of the symptoms. I must admit I was expecting them to say "terrible balance in left ear! or something but I have also started to have much better days of late! They debated for a while they decided if it was the grommet was affecting the results and in the end they only did the cold air test and didnt't bother with the warm air. I said that as I had started having better periods I may start to rethink the whol gentamicin injections but as the consultant appointment isnt until 28.7.08 I have a while to see how I am!

25.04.08 - Back to the hospital and the balance clinic today. My balance specialist has suggested a different kind of caloric test where they use air rather than water to stimulate the inner ear so that they can compare for balance function on each side. She checked with a senior consultant as she wasn't too sure if they could do the test because of the grommet but because they are using air the grommet wont affect the test. This test is called Air bithermal caloric and I will be having this on 12.5.08 though my follow up appointment with the consultant is not until 28.7.08!!!

4.04.08 - I have been doing my balance exercises for over a month now. I go back on 25.04.08 however although I have improved with the exercises, my overall sense of dizziness is the same. Last week I was worse and found the exercises suddenly very hard to do! But after a few days I was able to do them ok again. It's mad that I can do them but that I feel so dizzy when I am not moving! How I wish my world would remain still! The Prozac suddenly seems to have stopped working. I've had a cold and haven't been exercising - Prozac really helped me to regain the drive to do exercise but this last week has been rubbish! I'm hoping this is temporary otherwise I will go back to my GP to review the dosage. I wrote to my specialist as I still haven't had an appointment so again I feel in limbo and no better of where I was a year ago!

06.03.08 & 14.3.08 - I arrived at the Audiology clinic om 6.3.08 where I saw the "Balance Team Leader" for my caloric tests. She told me my notes had gone walkabout so she took a case history from me direct and then looked into my ears. When she saw the grommet she said that there was no point carrying out the caloric test as the grommet would show a difference in ears; because of this the results wouldn't tell us much. She tailored some balance excercises for me and a week later I went back and agreed that they would contact the specialist to make an appointment to see if they were prepared to take the grommet out to perform the test! Why the specialist didn't realise in the first place i do not know. Prozac has really helped stop the depression that I have been feeling this year. I manage to keep happy and despite every day knowing it will be another day filled with fuzzy head/walking on clouds/spinny feelins. I am not having much full on spinny vertigo (I feel swirly all the time, but visually the room is not spinning, its more me spiralling around) whether this is the tablets, low salt or co-incidence I don't know! The pressure in the right ear has reduced and it does feel different to the pressure in my Menieres ear (right). But it does pop back for visits so I still have some hope that its still just my left ear and that the fullness I feel is more to do with having a grommet only on the one side!

25.02.08 - I saw my GP as I have been depressed and he has prescribed Prozac. I just want to do normal things again, to make plans to go out and not dread them because of feeling so dizzy and uncomfortable in surroundings. It's not that I feel better by staying at home, but home is SAFE. I just want to go to surprise my partner with Theatre tickets or a spontanous weekend away and to not have the worry about how I am feeling. I haven't had a holiday in a year and a half and to book one would just mean worrying!

06.02.08 - I saw the specialist ( a colleague of normal bloke) today and he said that he wanted to carry out the caloric tests (again!) to see if it is one ear or both before deciding on the gentamicin injections for sure. He said to me that there IS hope!

07.01.08 - Things have been rather grim! I would conclusively say the grommet has not helped me. Worryingly I have been having a lot of pressure in my right ear. My Meniere's ear is my left! I have had 2 "almost spins" and one "feeling drunk in a town centre" episode, and in between all this I'm just feeling dizzy and like the world is constantly swirling around - sleep is the only escape - unless I am dreaming dizzy which I often do. So I went to the hospital today and asked for my next appointment to be ASAP and now have 6.2.08 which is great as I was expecting to be waiting so much longer!

31.12.07 - The good period carried on and when I saw my specialist on 18th December my hearing was back to normal (which surprised me) and I said to the consultant that I felt better and hoped that things would continue to get better. Then on Sunday 23rd Dec I met my brother and we ate. I said to my partner Allen"I'm going to have nachos (SALT ALERT), if I feel ill after these then salt does play a part. within 10 minutes I began to feel much more swimmy. The drive home was difficult as it was also foggy and Allen had been drinking so was unable to do drive, so I really had to focus. Over xmas I felt lousy, continuous swimmy vertigo feeling. Although its improved a bit over the last day or so if I do not go back to how I was feeling looks like I will have to bring forward my next ENT visit and say that I want to go with the gentamicin injections as it is really bringing me down again! Sometimes it hits you twice as hard when you have felt better.

06.12.07 - For the last two weeks there has been some improvement, whether this is the grommet working or coincidence its hard to tell but I feel better...its still there...but I feel better....I feel like going out and stuff! Fingers crossed it keeps up, I have a further appointment with specialist in a few weeks.

27.10.07 - I wish this were the bit where I reported amazing improvements...but it is not :(
I am still extra deaf and tinnitus extra loud but still have dizziness around me all the time with sudden shocks of vertigo that don't end up anywhere. Its only been one week so I'm going to keep hoping and give it another week!

23.10.07 - On Friday (19th) the grommet was fitted. I didn't feel dizzy prior to the op and I didn't feel dizzy after. For the next few days my tinnitus was much louder and sound was similar to being under water but no dizziness. Then on Monday afternoon (22.10) the dizziness started to creep back and now I am feeling pretty dreadful. I have picked up a cold so hopefully this is exacerbating it. Everyone is saying "early days" but it is hard no to be disheartened! let see what happens. For now, I am going to bed taking consolation in website's that report about week for the grommet to settle in!

19.10.07 - An hour and a half ago I had my grommet fitted! OUCH that anaesthetic was a bitch! All went well though I won't go into much detail about the disorganised lead up to it (waiting in a corridor, next to the refuse, for 40 min's as there was no where to sit, before being told they gave us all the wrong times ....).

I've had some much better periods lately though plenty of feeling pants times too! But at least the better periods have been popping up a little more often. Even managed a break away for a few days without being disrupted! lets see what happens with the grommets!

15.08.07 - Saw my ENT chappie today who confirmed MRI fine and that we are to carry on plan for grommet to be fitted which is not until November (NHS waiting list). I am to see him again in December and if the grommet hasn't help then it will be the gentamicin injection. He wants me to keep on a low level of Cinnarizine and to only use the Stemetil as and when needed. Have had 3 really good days, dizziness in the background. I seem to be starting to have good days again pheweee.If the grommets work first thing is I am going on holiday!!!

09.06.07 - dizzy, spiny, someone is blowing a balloon up in my left ear, tinnitusy. Another normal day :( Did have 3 days last week where it all died down, but with every good period swiftly follows the bad periods! Current ratio of bad to good 1:20!

16.05.07 - Saw a new local ENT who has suggested a small operation, which I am now on a waiting list for. Basically to try and equalise the pressure in middle ear a small plastic tube (grommet) is inserted into the middle ear. He also offered me a new Meniere's test but its very invasive. I didn't know that there was now a specific test for Meniere's now and don't seem to be able to find any more information, but we are leaving that anyway to see how a grommet works out. And I'll have another MRI just to rule out the nastiest.

18.03.07 - Yup, it wasn't a temporary glitch! The vertigo periods seem to be short, sometimes just minutes - but in between, the brain fog and dizziness are making quality of life rather poor. The ear pressure immense and more frequent than in the past. GP put me on Serc (betahistine), which didn't work so switched to Stugeron (cinnarizine) which seems to help but I feel so tired that I can't properly function. Periods of feeling "not so bad" are short lived, but I hang in for them. All this while trying to start a new job! So back to the ENT again. But as far as the outside world see's, I look just fine.

29.01.07 - Oh my god its all come back ! What a false sense of security my long period of being ok has given me! I must have been in remission! Its back to the old days, periods of varying vertigo, residual dizziness, brain fog, changes in the tinnitus with periods of screeching and ear fullness.

27.12.06 - Occasional problems but pretty much if I am run down Meniere's symptoms rear their head , but as things settle down, so it does too. Oh yeah , that was the one time I went into a children's park and thought nothing of getting on one of the rides. I won't make that mistake again!

30.03.06 -The last year and a half have been the best since all this started. A couple of near misses, one short episode of vertigo. Tinnitus, deafness and ear fullness stick around.

28.06.04 - I've been doing ok for the last six month despite allot of emotional upset in personal life which normally throws the Meniere's into overdrive. A recent cold left me with the usual constant dizzies but touch wood, I've been coping just dandy. That worries me because I know that then means i'm closer to a biggee!

16.01.04 - Christmas saw more colds yet surprisingly I was not too bad dizzy wise but WHAM first day back to work and SPIN SPIN SPIN as I opened my eyes from bed. It was 2 weeks before I felt back to "normal" not that I've felt normal for several years now! If I had been standing when I SPUN, I know I would have ended up on the floor just a lucky shot that I was already in bed!

All being well, I have been training for the READING HALF MARATHON which I will be running for the Meniere's Society on 7.3.04!

07.11.03 - Once I recovered my colds I have had 2 months of mild symptoms YAH! YAH! YAH!

05.09.03 - I never seem to escape colds lightly! The minute I get a cold Meniere's plays up even after the cold leaves. Two weeks ago the cold started and only just coming out of a two week cold/aggravated Meniere's episode. The worst headaches ever (I Always think that when I am experiencing them) and closing my eyes the merry-go-round ride begins!

16.03.03 - Now dealing with things "on my own" , pleased to report that while far from remission, I have been having a good year! Probably the best since it all began fro me in 1996. My brother, over the last year developing almost identical symptoms to myself added to the irony that the first thing i was ever told was that Meniere's was not in families. Now, reading up to date web sites and "Spin" the British Meniere's Society magazine, it seems Doctors are concluding that there are links to some sufferers. Boy have I come a long way since 1996!

30.04.02 - My appointment came and went and basically the hospital have told me to stick with the exercises. I have another appointment 07.05.02 which I have decided to cancel. I have finally reached the point where I am managing life with Meniere's and realise that the hospital at present, cannot help. The last few months have, as always been up down, however I am pleased to say that for that time things haven't been too bad!

09.10.01 - As my next appointment approaches I am not so sure the Cawthorne exercises are helping. I do them when I can but it can be difficult to motivate myself to do them! Have had flu symptoms for 3 weeks, these make the dizzies worse. Coughing alone is setting me off. Out driving last night has to pull over for fear of vertigo episode, luckily subsided after a few minutes. Eammon (best friend) was with me thank goodness (not that he can drive!) Have managed to strike up agreement with work that if I am dizzy I can do more work stuff from home which helps ease my mind. Have had plenty of complete sudden hearing loss in right ear but every time it returns from 5 minutes to an hour later..

06.09.01 - 2 Hours of vertigo in the night, lots of being sick! After quite a good couple of months this week is proving tough. Very drained, Meniere's headache, finding it hard to do lots! Exhausted! Still trying to be good with the C Cawthorne exercises although did miss a week or two!

21.08.01 - Not a great deal of vertigo although had a small attack in the middle of the night. Other than that have been *really* lucky lately with mild dizzies, the usual headaches but all in all not doing bad at all! A new partner, so going through the usual trying to explain without seeming MAD phase but he is understanding! Am doing the new Cawthorne exercises, whether or not they actually are helping is anyone's guess!

21.06.01 - The National Hospital for Neurology and Neurosurgery. Had two appointments there. They redid the balance tests and the results came out that it was in fact my RIGHT ear that is the problem and that here is a distinct balance problem there!?! Completely different results to the first tests. They were also more understanding about the lack of deafness- they asked "..but do YOU feel that you have a problem hearing" as its about perception and tests can't show up how an individual feels!. Once again they have given me Cawthorne Cooksey exercises, but this time they are somewhat different and their approach is completely different the the first sets I used to do. Now I concentrate on once exercise at a time and don't move on till I can complete it without discomfort or until 2 weeks have passed. Much better way of doing it!

Had nasty vertigo day before yesterday! Super spins ugh!

26.02.01 - Another appointment with the ENT. I had a nasty turn following some balance exercises in the ENT's office and the ENT was sooo supportive! The Cawthorne Cooksey exercises haven't been helping so I have been allowed to stop doing them! The ENT sent me for some more blood tests (all have since come back fine) to rule some other stuff out and he now wants to send me to Professor Luxon (specialist specialist) The National Hospital for Neurology and Neurosurgery! He admits he isn't sure what to do and I was amazed he admitted that, he regained a lot of respect back from me. He understands that Meniere's seems to be in the family, but my hearing is still within "normal range" so will not diagnose Meniere's for sure.

Now the only "untouched" Uncle was hospitalised during a Vertigo attack and is now pending a Meniere's diagnosis! That's ALL my uncles & aunt now!

04.09.00 - As usual up and down. Have seen the Hearing therapist a couple of times and am back doing Cawthorne Cooksey exercises although I am not so sure they are helping much! Tired all the time, frequent long spells of dizziness. I didn't find SERC helped nor any of the other things. I am frequently having more dreams where I am spinning in the dream and wake up dizzy. Still managing to plod along though, still fighting!

04.06.00 - For the last week on and off I have been so dizzy! The last few days in a permanent state of dizzies, as if walking on a boat all the time. I am on SERC and Gingko Biloba and Ginger to try and help! I am dreaming dizzy dreams. My father does this too - incorporating dizziness into dreams!

28.02.00 - Another hearing test to measure any changes in my hearing....Have been having vertigo, and so much dizziness but am plodding on as best I can still. Doctor reckons my back problem, stiff neck is worsening the dizziness due to what's going on with my neck. He wants to wait another year before labeling me with Meniere's.

6.9.99 - Today I received a letter from the Doctor confirming that my balance mechanism and inner ear (left ear) ARE NOT functioning correctly, but due to my lack of deafness, he is still UNABLE to diagnose Meniere's! Last week I had a severe dizzy attack with VERTIGO, which is typical .

However, at least the ENT specialist is confirming that his original diagnosis to be incorrect- Everything is NOT in my head! I am pleased that the Doctor has advised me to stick to my low-salt diet, and I feel I am finally closer to some acknowledgement that I am not a loony!

24.8.99 - Had my balance tests- a variety of different tests, with electrodes attached to my head, probes in my ear and inner ear! They took about 3 hours to complete and I left feeling totally STABLE! The one day I thought I wanted to be dizzy to show them what I am like, is the day I am FINE!

10.5.99 - Basically the ENT has decided that I should have all the necessary tests re Meniere's. This time I brought support (my dad!) and was not dismissed as a loony!!! The Doc said that I may have Meniere's but that I didn't have it when I saw him in 1996! This was an utter joke to hear this! Of course the specialist had to say that otherwise I could have sued for misdiagnosis! But to say I DID NOT have it then BUT MAY DO NOW says it all!
It is nice to finally be taken seriously! The ENT said that maybe my family had one of the types of Meniere's typical to families (erm sorry, didn't you say it wasn't in families!) - I have now spoken to several others now who have more than one case of MM in their families!..



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