Meniere’s Updates

Hi,1/01/2013 4:40 pm 100411 Main StoryMy Menieres Story – Colin C Spain 62 years of age – 22 August 2012
Looking back, the first signs of menieres for me was having a few light dizzy spells that lasted no more than 5 seconds at a time. These happened irregularly and usually at home.
11 April 2010 Sunday
My first major attack came on our return from Sunday shopping at Doncaster. I really thought I had food poisoning from food which both my wife Lyn and I had at lunch from a Mexican food outlet in the food court. Just as I walked inside, I felt seedy and needed to vomit. I got rid of my lunch and rested for an hour or so and felt back to normal. There was no sign of discomfort from the food for Lyn.
21 April 2010 Wednesday
My second major attack came in the form of feeling dizzy just as I was arriving home from work. My wife and I had the same meal from a cafe (Indian dhal included). I sat in the car for a moment hoping that the dizzy feeling would leave but the feeling of wanting to vomit came on and I had to rush inside. I was in the bathroom when my wife arrived home. After resting, we chatted about the same meal we had had and thought that maybe highly curried/seasoned foods were causing the problems.
14 May 2010 Friday
I had told the staff at the gym where I do the Remedial Massage, about my dizzy spells and was massaging one of the gym trainers, Cheryl, when only 10 minutes into the massage, I felt dizzy and uneasy. 5 minutes later, I had to stop the massage and vomit with Cheryl still there. I was quite embarrassed to say the least. Cheryl was extremely kind and understanding about the situation and made me feel somewhat at ease. I waited an hour or so before I drove the 30 minutes home in a slightly dizzy state. That was when I decided that I should consult my GP again. On the Monday, he did a few tests during the 15 minutes and said that he believed that I had menieres. Back in November 2008, I had been to James complaining about the reduced hearing. He had sent me to Patrick Guiney who had put me through a hearing test and MRI, followed by a second hearing test 3 months later. Patrick suggested we wait and see how things pan out. Patrick’s report went to James and when James was doing the testing on me, he was trying to confirm what Patrick had suggested was the problem. James suggested I go on a low salt diet, and to educate myself on the disease as soon as possible. He also prescribed stematol. The was well read by my wife and I. I ticked all the boxes for classic menieres disease. How helpful that site is!
22 May 2010 Saturday
My wife and I decided to have a Saturday night in town and meet up with David & Elaine from Sydney for dinner. Then we would go for a bike ride around Melbourne on the Sunday. We went to Sole Mammas vegetarian restaurant in St Kilda. I mentioned to the staff that I could not take salt. The chef cooked up a very good meal just for me. About 15 minutes into the meal, I felt the closeness of the restaurant upon me and my ear became ‘full’ and my hearing in the right ear was very low. Then a room spin started and we left the restaurant, me holding on to 2 others. The bathroom was downstairs and with the help of David, made a bee-line for it. How embarrassing. I felt like a drunk in a busy public toilet. After my vomiting, I sat outside at a coffee shop hoping the sea air would help, but to no avail. I did not make it to the bathroom for the enormous episode that followed. When I settled down, I was helped to the car to take David & Elaine to where they were staying in Elwood. On our arrival there, I chose the nearest lamppost for another episode. On arriving back at the Carlton Crest Hotel, I made another bee-line for the bathroom. I slept well without a problem. Sunday morning, instead of taking a bike ride, my wife and I sat in the room looking out over Albert Park Lake until we checked out at 11:00am and returned home with Lyn driving, of course.
I saw my GP again on the Monday and he prescribed ½ Serc three times a day. He also referred me to Patrick again.
I tried to get in to see Patrick Guiney on the following Monday, but he was not able to see me. So I asked to see ‘anyone else’. I saw Tim Baker on 1 June Tuesday at Ringwood ENT. He did further tests and confirmed classic menieres disease. He also related the no-salt diet plan. But did nothing else as far as testing goes or suggestions on how to manage the problem.
20 June 2010 Sunday
I was at home and before breakfast, another room spin and vomiting happened. I had had dizzy feelings on the Friday and Saturday before. I had to rest for the remainder of Sunday. I was wrecked.
I was able to see Patrick Guiney on June 28 Monday. He prescribed 1 dithiazide each morning. The side effects are shown as ‘may feel dizzy’. I sure did and after 4 days on dithiazide I stopped taking them.
There were dizzy days often after this. I was preparing to go to France to ride some of the Tour de France in July. Eventually, I decided it was not a good idea to take the bike but I departed for Paris on Sunday July 11. My wife was strongly hesitant to let me go, but she would be meeting me in Paris in 2 weeks time, anyway.
22 July 2010 Thursday
I woke up in the town of Bagneres-de-Bigorre in the Pyrennes. The weather was atrocious for a spectator, little loan a bike rider. I thought, “I’ll stay in the room and watch the race today.” And went back to sleep. When I awoke, I was in this enormous room spin. I sat up against the wall and tried to relax. But it was too much for me and had to vomit my heart out for an hour or so. It was getting up around mid-day and I had rested for 2 or 3 hours. I thought, “I’ve come all the way over here to watch the stage up Col-de-Tourmalet, and I’m going to watch it on a little TV in a dingy little room – you’ve got to be kidding!” It was my goal, before menieres came, to ride up Col-de-Tourmalet. So I prepared my pack and hopped into the car and drove 35kms to the car park approaching Col-de-Tourmalet. I was still not seeing straight but this menieres was not going to stop me. At the car park, I waited for 90 minutes and then started out walking the final 5kms to the summit. Would you believe, I positioned myself just 20 metres from the finish line? I waited for 2 ½ hours in the mountain mist for the riders to come through. By then, the dizzy feeling had passed, and I was able to walk safely back to the vehicle.
24 July 2010 Saturday
At the end of the time trial held in Bordeaux, I boarded the fast train to Paris to join my wife who had brought a group over from the Yarra Valley to do a River Cruise from Amsterdam to Budapest starting the day after the final stage of the Tour de France. I ate some yoghurt and fruit salad on the train and went to sleep – travelling at over 200kms per hour. I awoke in a room spin. I quickly made my way to the bathroom and stayed there for 50 minutes. When I came out, a Canadian lady came out to the spot where I was standing to ask if I was OK. I said I had menieres. She responded by telling me her sister has it and asked if I needed help or if I would rather be left alone.
I then made my way to my seat still spinning. It was night-time now and the train was doing around 300kms per hour (I could trace the speed on my GPS). It entered some tunnels and the pressure on my ears was extreme. And then we were stopped at the main Paris railway station. I had to get my pack down from the baggage rake above, walk through the carriage and out onto the platform. The TGV is a very long train, and I had to walk most of the length of the platform before signage told me the direction to the Metro underground. This was at 11:30pm.
The distance to the Metro was probably 1 km, all underground, with long travelators going all over the place. I arrived at the ticket machine in a complete daze and couldn’t read the machine instructions at all. Fortunately, the ticket office was able to help me by pointing me in the direction to my suburban train platform. After riding 3 stations, I got off the train and walked up the stairs to Paris downtown. This whole time, I was in an intense room spin and was walking like a street drunk. Luckily, I carried a GPS with me in France, and so I was able to keyin the hotel location and get directions to the Scribe Hotel where my wife was. By this time, it was 12 midnight. On opening the door to the room, Lyn got the big surprise, “you’re not having one, are you?”
The following day was the final day of the Tour de France, so my wife and I made our way to the route and was able to be first at the fence and sat waiting through to the end of the race for 6 or so hours. The rest was good for my body. The following day we coached to Amsterdam and boarded a ship for a two-week river cruise to Budapest with 25 others from the Yarra Valley.
We found the staff on the ship were very accommodating even though they hadn’t heard of Menier’s Disease. With a little education, the Head Waiter of the dinning room had saltless bread rolls available for each of my meals. He would come to me on my arrival to meals and go through the menu ruling out the dishes with salt included. If I could not choose an appropriate dish, he would have the kitchen make up a course just for me. It was good that I could get stuck into the desserts each meal; sometimes enjoying three at the one sitting. We could not fault the treatment and care they gave me. We travelled with Scenic Tours on the “Scenic Emerald” and can recommend the crew as one which makes your trip well worthwhile and enjoyable.
29th July 2010, Thursday
The town of Wertheim was a stop where we choose to do a short 4-5Km bike ride into a valley. Everything started out fine and I felt 100%. At one point I rushed ahead to take some video of the other riders as they enjoyed the leafy trail. We visited an old village church and graveyard. At that point, I started to feel a bit woosey. I got back on the bike and couldn’t pull myself over to the right side of the bitumen trail. We stopped for some more talk, and that’s when I felt I could not go on further. My head started to block up and the great scenery started to spin violently. Quickly, I got off my bike and made my way to some long grass on the side of a field to vomit and vomit and vomit. Lyn accompanied me to give emotional help but that is so hard for loved ones to see the attack at its most annoying period. After some time, the other riders returned to Wertheim while the group leader telephoned the ship leader to arrange a taxi for my return to the ship. It took 24 hours to recover from that episode.
Throughout the rest of the tour, I had no difficulty with any more attacks and only slight dizziness for some days. Flying was not a problem and meals were always served to me before the rest of the cabin – low-salt, of course.
In the next 4 weeks, I had many attacks. One of my massage clients is a newly graduated naturopath. When I mentioned the MD to her at her next appointment, she became extremely helpful and sent some ‘stuff’ with her daughter the next week, as treatment for me. Since taking some pills and using the ear-drops each night, I have not had any further attacks. If I feel ‘funny’ I ‘plug’ my ear with these drops and within a few hours, the discomfort in my ears goes and I don’t get nauseous anymore. It has been amazing. It is nearly 2 years since my last ‘lethal’ menieres attack. I am on serc up to 3 times per day, natmur (homeopathic), Vitamin B-Complex & Vitamin B3 tablets.
As we own a travel agency, we love to travel and in the last 2 years, I have flown to France and done a River Cruise, flown to Tahiti and enjoyed a 7-day cruise around the islands, flown to Vietnam for a 24 day tour, including 2 days on a push bike, flown to Italy for a 14 day coach tour followed by a 10 day cruise around the Eastern Mediterranean, and next year, we are taking a group to Africa to visit 8 game parks. (Feeling jealous-? – sorry!!)
I hope my story is helpful to someone and that I have not bored you. I am happy to recommend my naturopath for you to see. I would love someone else to try the treatment she gave me to see if it would help more than just me.
March 26, 2013
Last evening, I was sipping a ‘home after work’ cup of tea, when I felt uneas and my eyes became unsteady. When I steadied up, I lay down and a room spin started to take hold. I let it happen for a minute so I could consciously take note of the feeling that had not happened to me since August 29, 2010.
I thought I would have to change our travel plans to France, leaving tomorrow. I decided to sit up and the ‘room spin’ stopped. Still with uneasiness, I walked around the house waiting for the next stage to rear it’s ugly self but just a feeling of ‘why has this thing come back again to haunt me?’ filled my mind and I was hungry.
When Lyn arrived home she prepared the meal but I could only have a few mouthfuls. I felt very tired and useless again. So I got in ‘my chair’ and hesitantly watched TV. After a couple of hours, I felt ready to lie down and slept from 11:30 to 6:00am.
I feel ok today but will take the day slowly to begin with. There is a lot of work to do at today prior to our departure for France tomorrow.
18 April 2013
What have I been doing Wednesday? I have Meniere’s Disease and today I had the first attack since August 2010. An attack involves ‘room spins’ or intense vertigo and today, 90 minutes of vomiting. This can happen very suddenly and can be very embarrassing when at work or in the street. There are 40,000 sufferers in Australia and we wish government would recognize it as a disability. Today received $50,000 to help with providing resources, a first, but so much more is needed. We long for continuous funding for both resources and research into this debilitating disease of the inner ear.

26/03/2013 7:08 am 130326 Number 14 Attack

Last evening, I was sipping a ‘home after work’ cup of tea, when I felt uneasy as my eyes became unsteady. When I steadied up, I lay down and a room spin started to take hold. I let it happen for a minute so I could consciously take note of the feeling that had not happened to me since August 29, 2010.
I thought I would have to change our travel plans to France, leaving tomorrow. I decided to sit up and the ‘room spin’ stopped. Still with uneasiness, I walked around the house waiting for the next stage to rear it’s ugly self but just a feeling of ‘why has this thing come back again to haunt me?’ filled my mind and I was hungry.
When Lyn arrived home she prepared the meal but I could only have a few mouthfuls. I felt very tired and useless again. So I got in ‘my chair’ and hesitantly watched TV. After a couple of hours, I felt ready to lie down and slept from 11:30 to. 6:00am.
I feel ok today but will take the day slowly to begin with. There is a lot of work to do at today prior to our departure for France tomorrow.

31/08/2013 12:00 am 130831 Attack Perth Airport

Was at Perth Airport waiting for flight to Melbourne having hot chocolate. Felt a little dizzy then room spin started. Wheel chair to bathroom twice for vomit sessions before getting on aircraft. Waited extra 2 hours before aircraft ready for departure. Was ok when we departed.

4/09/2013 7:05 am 130904 Atlas Treatment

6/09/2013 7:06 am 130906 C1 Treatment

10/09/2013 7:07 am 130910 C1 Treatment

20/09/2013 4:32 pm 130920 New Glasses

From OPSM Chirnside Park

21/11/2013 7:30 am 131121 Atlas treatment

22/11/2013 9:31 pm 131122 C1 Treatment

22/11/2013 9:32 pm 131125 C1 Treatment

4/12/2013 10:00 pm 131204 Dizzy Croydon Band

Was at Croydon Band. Near the end of practice, felt dizzy. Drove home very scarred not looking to left or right as that made me almost room spin.

5/12/2013 5:00 pm 131205 Attack Ringwood

Started at Ringwood while waiting for service. Spin vertigo burps vomit. Left 3 hours later

8/12/2013 9:30 pm 131208 Dizzy The Oaks

Felt dizzy and unsure at The Oaks beach. Had sleep for 30 mins and woke ok to drive.

9/12/2013 9:00 pm 131209 Attack Home

Sat up after tea and felt dizzy. Then room spin deafness and 45 mins vomiting. An hour later could walk.

14/12/2013 10:36 pm 131214 Closed in feeling Lilydale Church

Was at Carols Service at Lilydale Church. Felt dizzy during concert and walked out near end. Sat outside and came good.

17/12/2013 9:41 pm 131217 Dizzy Home

Felt dizzy most of day. Went to Inner Wheel Christmas Function. Lyn drove

19/12/2013 10:34 pm 131219 Unsure Ringwood

Felt unsure most of day but took to Ringwood for air conditioner repair. Rode train to Frankston and visited

25/12/2013 9:30 pm 131225 Attack Car on way home

Had Christmas Dinner and tea at Earlenes Place. Left at 10:45. On way home felt dizzy driving. Arrived home at 11:15pm and went to bed dizzy and burping. Awoke at 11:40 and had room spin and vomit for 15 mins. Went to get blanket to sit in chair for sleep but quick return to loo for vomit which lasted an hour. Return to chair and slept to 4:39am. Then went to bed and slept to 6:45am

27/12/2013 6:49 pm 131226 Unsure Home

Felt unsure thru to 2pm then drove to Geelong in

14/01/2014 4:53 pm 140114 Dizzy Home

Had prob re Grace calling for assistance with bed move. Got agitated and short with Lyn. Lyn also short with me. Did a massage at 10am then vacuuming and washing tiles. Sat down at 11:45am and started feeling dizzy. Lots of deep belching. Dizzy turning to almost room spins. Tried vomiting but belching too severe. No lunch. Had rest in chair. Eyes all glazed and vision hopeless. BP 139/60. Short sleep and started reading helloworld document comments from solicitor. Plugged my right ear and had some anti nausea drops. Eventually came semi good. Feeling better now at 4:53pm

24/01/2014 10:09 pm 140124 Dizzy Jays place

Drove to Geelong to visit Jay. Felt dizzy about 5:45pm and sat in Motor Home for nearly 3 hours. Plugged right ear and took nausea drops a couple of times. Eventually came more stable had some baked potato at 9:00pm. Felt like spewing a couple of times but feeling subsided each ‘hit’.

9/02/2014 8:46 pm 140209 Dizzy Home

Watching Winter Olympics and the dizzy hit. Plugged the right ear.

10/03/2014 7:35 pm 140310 Unsure Home

Started when I got up but hindered my day somewhat

20/03/2014 7:49 pm 140320 Dizzy attack Sq to Singapore

I was asleep on our flight to Singapore when we started to descend. They turned on the cabin lights and I woke feeling. “Oh oh. Not now, Mr Menieres.” So I went into ‘stationery mode’ for the rest of the flight. I struggled off the aircraft and, after exiting, Lyn was there to do the immigration, collect the baggage, and do the customs formalities. We had arranged transfers to our hotel 30 minutes into the city, and by the time we reached there, I was feeling a lot less dizzy.
I realised that I had probably mixed up my drugs by taking an antibiotic instead of taking a serc. “Oh well, just another one.”

5/04/2014 8:26 pm 140405 Dizzy Grafton Sharlees Birthday

Sharlee’s birthday party at a Chinese restaurant in Grafton, felt dizzy come on and went outside. Wobbly in walking. Subsided enough to drive the short distance home.
Must have been the closeness and noise in the restaurant that brought it on.

10/04/2014 8:21 pm 140410 Dizzy Home

Went to Melbourne Metro East Menieres Group Meeting and did shopping on way home at Doncaster. Had vegie spud for lunch.
Was about to get evening meal ready and felt a dizzy coming on. Sat in chair for 3 hours for it to subside. Had lots of deep burps over the toilet but no vomiting.
Don’t know why this one came on.

17/04/2014 8:40 pm 140417 Dizzy Home

I was going to get the motorhome ready for our Easter weekend in Geelong but just after Lyn left for work, I started to feel a dizzy coming on. Took to the chair and sat until 2:30pm. Ventured out to fill the fresh water tank, very unstable but managed. Then started to slowly take things to the gr8l1f.comwith much ‘holding on’ between the house and van. Even attached the bike rake and loaded the bikes on the back. Narell and Pete arrived, then Lyn and I felt ok to drive by then. Back to normal again just as we started the motorhome.

19/04/2014 7:11 pm 140419 Attack Geelong Showgrounds

At Geelong Showgrounds for Easter. Woke at 7:00am and by 8:00am started room spin. Had cup of tea. Had to get up at 8:30, dressed, a bit, and went outside to vomit against fence. Returned and sat in chair getting up now and then to have more vomits. Sat in chair to ride it out. Started to feel a little more stable after 12:30pm. Buggah – what a way to spend Easter.

27/04/2014 8:28 pm 140427 Dizzy Home with Steve P

Sitting talking to Steve in lounge room and ‘the’ feeling came on about 12:00 mid day. Had desire to throw up but was able to contain myself. No lunch and sat in chair. Had 30 minutes sleep while grandees were playing. Woke up at 2:45pm and everyone was ready to leave for Earlenes 60th birthday. I wanted to go as had prepared a DVD for the event. Lyn drove and when I arrived I had to have support to walk to party. Sat quietly for 2 hours before venturing to table for some food. Lyn drove us home and we arrived about 8:00pm. I felt ok. Can’t think what started me off – no stress and all food was low sodium.

3/05/2014 8:33 pm 140503 Dizzy Home LAA 50th

I woke and felt a little dizzy. Got up and prepared the morning’s tea in bed with Lyn. After the tea, I snuggled down for some more sleep and woke up quite dizzy. We were to go to the 50th anniversary at Lilydale Academy. Lyn got out of bed and I went back to sleep to awaken to her sitting on the bed putting in her shoes to go alone. I love reunions but this one had to be missed. By the time Lyn returned with some old friends to have to lunch at 2:00pm or so, I was feeling better and up trying to have a couple of eggs for lunch.

4/05/2014 7:20 pm 140504 Attack Doncaster

Lyn hadn’t been clothes shopping for months so we went to Doncaster, her favourite hobby spot. At lunch time, I felt sort of OK but a little off. About an hour after leaving the dinning area, I started to get a little dizzy and left Lyn and Earlene and went to the car. Things started to spin and got so bad I felt we needed to go home. Lyn didn’t hear her phone and so I had to walk, holding on to walls and railings along the way. Luckily, I was aware they were in Myers and found them to signal, “time to go home, I’m feeling dizzy”.
Arriving at Earlene’s house in Croydon hills, I knew I needed to throw up so went in and did so for an hour or so. At the end, I sat in a chair and just started sobbing uncontrollably. It had been a long time since that happened and I was embarrassed no end.
We made our way home an hour later and I rested for two days before being able to get around safely.
That was a big one.

7/05/2014 2:15 pm 140507 Received first shipment of Menieres Balance

Sent 21 Apr 14

9/05/2014 9:12 pm 140509 Dizzy Ringwood

Went to Doctor to renew ALL 5 scripts and to request full blood test including calcium potassium magnesium sodium.
Went to Eastlands and felt a little hesitant after lunch. When I was driving home around 2:30pm, I felt a bit dizzy and by the time a arrived home, was in a spin. Struggled inside and sat in my chair for the next 3 and half hours ‘enjoying the ride’ – haaaa!
Intenseness went off around 6:30pm and was able to start the soup for tea.

11/05/2014 6:38 pm 140511 Dizzy Shop

09:45 Was at shop doing some work for the group before having Mothers Day breakfast at Red Relish. Dizzy started and just managed to get to the cafe next door.
Wasn’t a major dizzy but need assistance. Lasted until about 2:00pm

18/05/2014 9:57 pm 140518 Attack Home

Coming home from a great weekend with the grandies in Geelong and at the football, I started to see headlight swivelling around and thought it best that Lyn drive. We changed drivers at Ringwood, and I kept my eyes closed all the way home – about 40 minutes. When I opened my eyes to get out of the car, I was in a terrible spin and Lyn had to help me walk into the house for a long session with my head down to loo. Too much, really. Eventually, I got to my chair and waited for awhile before deciding I was ok to go to bed. I woke at 11:57pm and felt that the attack had passed, and slept ok for most of the night.

31/05/2014 5:05 pm 140529 Start of Trip to Dubai, Norway and Baltic Sea

31/05/2014 6:42 pm 140531 Unsure Dubai

Felt unsure so stayed in Hotel room for morning

3/06/2014 5:56 am 140603 Dizzy Oslo

Felt dizzy in the afternoon so stayed in room instead of going into town

9/06/2014 1:06 pm 140609 Attack Glacier

Glacier. After 3 weeks, I have disgraced myself on a day that was another highlight of the tour. The plan was to go on a visit to a famous glacier but before I got on the trolley car to transport us up to it, I had a feeling that I was on the way to a major attack. I wasn’t wrong. I had to sit still at the bus park while the rest of the group enjoyed the glacier. Buggah!

17/06/2014 10:27 am 140613 Dizzy Lillehammer

Arrived at hotel in Lillehammer and took a break in the room – no evening meal.

14/06/2014 1:00 pm 140614 Cruise around the Baltic Sea

On the Eurodam out of Copenhagen.

15/06/2014 8:00 am 140615 Acupuncture treatment

On board the ship is an acupuncturist. I have noticed some Meniere’s Disease sufferers report that acupuncture helped their symptoms, so I took the free interview and decided on a treatment. Brendan, a Canadian, was very good and had had some positive results with patients in the past, but not all. He insert 18 needles all over my body and left me to relax for 15 minutes. In his return, he tweaked the needles and left for a further 15 minutes. That was all to the treatment. The following day I felt ok.

17/06/2014 9:43 am 140617 Attack St Petersburg

We arrived in St Petersburg to re-visit Peterhof Palace. Lyn and I were in the assembly area and ‘that’ feeling came over me. I thought “should I stay?” I disembarked and went through Russian Immigration and on to a bus for the tour. The feeling got stronger so I made the decision to go back on the Ship. I stumbled back through immigration and onto the ship and up to the room. Nystagmus was starting to take control and I was fairly wobbly walking the long corridors. I got into the room, put everything away and thought I would be ok to return my excursion ticket for a refund. With wobbly steps, I made it down to the main desk. While returning, the strong urge to vomit came on and I just made it to the room and burst into the bathroom to begin the long episode of vomiting. I cleaned up and took a nap when I felt ok, sort of, and an hour later, another vomit run happened. I felt a lot better after that. And now I am just resting hoping to get stable soon.

20/06/2014 4:00 pm 140620 Dizzy Stockholm

We arrived in Stockholm around 8 o’clock. Our plan was to do the hop-on hop-off bus and boat for the day. Soon after breakfast, I felt dizzy and decided to stay on board. Nystagmus took over pretty quickly but I never threw up. I just stayed in the room,dizzy, for the next 4 hours. Lyn returned at 1:00pm and I was feeling better although not ready to ride a bus for the afternoon. Around 2:30, 3pm, I decided to walk the 2km towards to the old part of the city to try upload the post for Helsinki and felt much more steady as I walked along the shore, into the old town and back to the boat via McDonalds free Wi-Fi.

22/06/2014 6:44 am 140622 Dizzy At Sea

Woke up dizzy

24/06/2014 9:00 pm 140624 Dizzy Kiel

At dinner on table of Americans we did not know, and felt things changing. No major spins but had to be escorted to room.

10/07/2014 10:13 am 140710 Slight Dizzy YTJ

After picking up the Caddy from having the CV joints replaced, I felt a little dizzy while driving back to Fortunately, didn’t develop into anything too drastic.

11/07/2014 10:36 am 140711 Eye Check Yarra Junction

Neil Romei Spent a long time finding a prism that suited my problem. Clearest vision I have had in years. Looking forward to new glasses

12/07/2014 6:17 pm 140712 Attack Warby Church

We were out – at church – when that feeling started. Made my way out looking like a drunk in church lol
We were 15 minutes from home. Went to some friend’s place for the vomit period. Waited for 3 hours to come home. Have had a good sleep and feeling steady like, now

18/07/2014 9:52 am 140718 Drop Attack Home

At 6:00 this morning, I had my first drop attack. I got up to go to the bathroom and didn’t make it. I fell on the bed with a heavy, can’t move feeling. Had full room spinning too and thought I was going to vomit. After 60 mins, the room stopped spinning and after a further 30 mins, I was able to complete the journey to the bathroom. What next?

1/08/2014 2:00 pm 140801 New hearing aids installed

29/08/2014 6:02 pm 140829 Hearing Aid Check

Went to see Blamey Saunders to have the hearing aids ‘tweaked’ and my hearing is much better especially in the right ear.

16/05/2014 6:49 pm Interesting Info

The inner ear regulates balance with fluid. Sometimes tiny stones in the ear seem to undergo a chemical change from calcium carbonate to calcium phosphate and then roll around in the fluid, leading to loss of balance. The cause [of the calcification] is unknown. There is no cure.
The Calcium Bomb, page 11

Well here goes. Since I returned from Scandinavia late June, I have had a Buggah of a time with many days of attacks and dizzy feelings. So, we have done a few things and put back in place a couple of regimes to help reduce the severity and frequency of the attacks.

I was having problems with my eyes. My eyes have both had cataracts and the right eye has had a detached retina. My vision was showing the left eye as ok but the right eye saw the vision down and tilted down to the centre. I was giving the optometrist a headache in getting this sorted out, so he put my hands on the ‘steering wheel’ to get the vision I saw, level and clear. What a difference I was able to make to my own vision by just tweaking a few dials to a point that the eyes almost see the vision at the level and the angle vision has now been corrected. We hope that the extra prism the optometrist was able to include in my prescription has been able to help reduce my Menieres dizzy attacks. I also drive with orange tinted sunglasses to reduce glare even at night.

The best audiologist anyone can have is their spouse. Mine has been at me for quite a few years to get hearing aids. Well, today, I purchased a pair of hearing aids. I now can hear things that had left my hearing ‘vocabulary’. The crackling of paper is very predominate and the sound of running water into a tub of water is quite loud. Hopefully, this will assist in my keeping the balance mechanisms stable, thus reducing the Menieres attacks. This was done through who were involved with Professor Clarke in the discovery of the cochlear implant. Their hearing aid is able to be controlled by me from a program on the computer and so if I want to tweek them a little, I can at will. These are as good as what’s in the market for over $10,000 for less than $4000 including the program and twelve months supply of batteries.

Before we went to Scandinavia, I was having a green drink each morning (silver beet, nuts, apricot juice, and whatever else Lyn wants to disguise from me, whized up in the Thermomix) and going for a 40-60 minute walk before or after breakfast each day. I have started that again and also taking life a lot more easy with a sleep or two during the day.

One of the drugs I have been prescribed by my ENT is serc. These are produced in France. However, the pharmacist and doctor suggested a cheaper version which is produced in Pakistan or India – you know, the non branded drugs that are on the market as “cheaper, but with the same ingredients”. Maybe, but what about the quality of those cheaper ingredients? So I have gone back to the original serc from France. Some Meniere’s Disease sufferers on Facebook had reported an increase of attacks when on the cheaper Sinieres brand of serc.

For the last 4 months, I have been taking a new product called “Meniers Balance” made in Boise, Idaho. The researcher who worked on this project saw her mother with Ménière’s disease and decided to do something about it. The product is designed to reduce tinnitus and vertigo. I have spoken directly to the researcher and am one of the test cases for the product.

This all seems to be working well and tomorrow will make it two weeks since I have had an attack or any sign of being seriously dizzy. A bit of an investment but we are hoping that my quality of life is back on the mend again and I can be back helping others, with the same disease, a little more.

I have a project I have started in order to raise some money to get together more resources for those who have Meniere’s Disease. We all have ‘brain fog moments’ and Menieres sufferers are at the top of the list for such experiences. If you send your, or anyone else’s, brain fog moment (you may be fortunate to have more than one – they will all be accepted) to the following email address – we will include it/them in an iBook to be published just when we have enough stories. They can be embarrassing, silly, humorous, or just ‘very interesting’. I have a couple of illustrators who will be doing drawings or paintings, especially for the book, on a voluntary basis. All contributors will be kept anonymous or with just the initials. The contributors are already coming from all over the world and so this has become an international effort indeed.

So send in your story and get published and at the same time, help raise funds for Menieres Resource Centre, Melbourne, Australia.

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