Walking with Meniere's Disease

[malingerer]

Any one out there with personal experience and tips/tricks for walking with Meniere's Disease? Mine is getting worse! I fall inside as well as out of my flat I use my Pacer Poles most of the the time and shop using my hip-belt hiking trolley. This certainly ensures me social distance I also find when using the trolley I balance better. Obviously cycling is a no-no but if I could afford a tricycle would contemplate that! Please do NOT tell me to lay off the good red wine when in Spain OR coffee either!

Thanks in advance!

The malingerer.

 

[Turga]

Any one out there with personal experience and tips/tricks for walking with Meniere's Disease? Mine is getting worse! I fall inside as well as out of my flat I use my Pacer Poles most of the the time and shop using my hip-belt hiking trolley. This certainly ensures me social distance I also find when using the trolley I balance better. Obviously cycling is a no-no but if I could afford a tricycle would contemplate that! Please do NOT tell me to lay off the good red wine when in Spain OR coffee either!

Thanks in advance!

The malingerer.

I do not have Meniere's Disease, so can’t really comment and I guess I shouldn’t anyway – I’m not a physician. Many years ago, I suffered a severe case of Acute Epidemic Vertigo (or Vestibular Neuronitis) which, I believe, has somewhat similar symptoms, so I can understand how you feel; I have never forgotten that experience!

Please do NOT tell me to lay off the good red wine when in Spain OR coffee either!

I’d never do that! Coming from me anyway it would be highly hypocritical

I admire your can-do attitude and I wish you well.

 

[Camino Chrissy]

Any one out there with personal experience and tips/tricks for walking with Meniere's Disease? Mine is getting worse! I fall inside as well as out of my flat I use my Pacer Poles most of the the time and shop using my hip-belt hiking trolley. This certainly ensures me social distance I also find when using the trolley I balance better. Obviously cycling is a no-no but if I could afford a tricycle would contemplate that! Please do NOT tell me to lay off the good red wine when in Spain OR coffee either!

Thanks in advance!

The malingerer.

I ocassionally have a short episode of BPV, which is Benign Positional Vertigo, but usually only when turning over in bed, so I sympathize with your condition and am impressed it does not keep you from doing what you enjoy.

 

[Camino Chrissy]

I’d never do that! Coming from me anyway it would be highly hypocritical

It sure would be!

 

[goldie from aus]

Any one out there with personal experience and tips/tricks for walking with Meniere's Disease? Mine is getting worse! I fall inside as well as out of my flat I use my Pacer Poles most of the the time and shop using my hip-belt hiking trolley. This certainly ensures me social distance I also find when using the trolley I balance better. Obviously cycling is a no-no but if I could afford a tricycle would contemplate that! Please do NOT tell me to lay off the good red wine when in Spain OR coffee either!

Thanks in advance!

The malingerer.

My first CF was supposed to be this year so no camino experience. I suffer from vertigo - sometime slite, occasionally in bed dont move severe. When walking or trekking I try avoid sudden head turns, glances up and down and when standing have feet hip wide apart, helps with balance and wards off nauseous feeling. This especially when heading down hill. Lots of sleep helps especially after couple of nice red wines.

 

[daesdaemar]

It sounds as if your Meniere's Disease (endolymphatic hydrops) is severe. It is potentially quite dangerous primarily because of the tendency to self-injury. I would think seriously about venturing out on the Camino where there might be stretches of walking alone and having no aid available should you injure yourself. In my humble opinion, you should seek medical attention. Meiniere's is treatable/controllable to some degree. If your personal physician cannot do so then seek specialty care - an otologist who specializes in Meniere's would be your best option. Good luck!

 

[CarolamS]

My husband had Menieres disease and was prescribed betahistines to help. He no longer takes them as the Menieres has not been an active problem for him for some years now. I asked if they helped but he isn't sure because he didn't start on them until his dizziness had mostly gone. (The Menieres has left him profoundly deaf on one side.)
I presume you have Googled this. A quick look suggests vestibular rehabilitation is helpful and effective but I have no experiences I can report on this.
Good luck and my husband certainly recommends red wine

 

[lt56ny]

I know nothing about this disease state but I know it is a serious issue which as others have mentioned and you are aware of has the potential to cause injury. My only advice is when we are all able to walk again and you do decide to go please download AlertCop. It is an app that will immediately put you in contact with the police if you are injured or in a dangerous situation. I am not sure if it only works with a European Union telephone number or any other limitations. I always get a SIM card from Orange (their plan works best for my needs). If you do have an issue you can easily contact them. If you do not speak Spanish they will connect you with an English speaking person to assist you. I have luckily never used the app but I download it before each camino. You can get it at the iPhone app or Google Play app on your cell phone.
Good luck and Buen Camino.

 

[malingerer]

My first CF was supposed to be this year so no camino experience. I suffer from vertigo - sometime slite, occasionally in bed dont move severe. When walking or trekking I try avoid sudden head turns, glances up and down and when standing have feet hip wide apart, helps with balance and wards off nauseous feeling. This especially when heading down hill. Lots of sleep helps especially after couple of nice red wines.

I know how you feel and avoid everything that might upset my balance. It can get a bit hilarious tho cos if I bend over, I fall over! I did that when trying to get my coffee flask out of my trolley and was on my hands and knees quite comfortably when a car screeched to a halt and the young guy said " I saw you topple! Are you all right?" I looked at him and started to laugh but thought better of it and thanked him for being considerate. Normally I might have snarled and said " Course I'm all right, I do this all the time!", that being forces humour! Thanks for the reply, to all of you.

Walk soft and stay safe.

The Malingerer.

 

[Mikell Hughes]

Sorry to hear about your Meniere‘s disease! I have it for over 25 years but it comes and goes and I do not know why. When I do have an episode, motion sickness pills seem to help some. Meniere‘s is completely debilitating for me (sometimes 12 hour episodes) and you need a support person to go with you. The Camino can have miles of nothing so an episode can be very scary. I did not have an episode when I walked the Camino but it was always on my mind.

I find that sports that require balance (biking and running) are extremely important to me. Maybe a bike with training wheels for awhile. I always tried to walk for many days in a row for 12 miles at a time to in the USA to test myself and build some confidence. Hope his works for you. I never really found a way to control meniere’s and my doctors are not any help. The Camino was so much fun for my wife and I and I really hope you get there soon.

 

[malingerer]

Sorry to hear about your Meniere‘s disease! I have it for over 25 years but it comes and goes and I do not know why. When I do have an episode, motion sickness pills seem to help some. Meniere‘s is completely debilitating for me (sometimes 12 hour episodes) and you need a support person to go with you. The Camino can have miles of nothing so an episode can be very scary. I did not have an episode when I walked the Camino but it was always on my mind.

I find that sports that require balance (biking and running) are extremely important to me. Maybe a bike with training wheels for awhile. I always tried to walk for many days in a row for 12 miles at a time to in the USA to test myself and build some confidence. Hope his works for you. I never really found a way to control meniere’s and my doctors are not any help. The Camino was so much fun for my wife and I and I really hope you get there soon.

Many thanks for your post. At 82 I can break into a fast walk but not run! I tried desperately to get back to cycling ( I used to cycle-camp) but too many spills. It seems I have a severe balance problem left hand side irrespective of the Meniere's disease. I am on medication which helps a little but like you the medical profession has no answers for me. Its a big win and design the tricycle or nothing! I will be back tho one way or another!

Godspeed to you and yours.

Walk soft and stay safe.

The Malingerer.

 

[Anamiri]

Any one out there with personal experience and tips/tricks for walking with Meniere's Disease? Mine is getting worse! I fall inside as well as out of my flat I use my Pacer Poles most of the the time and shop using my hip-belt hiking trolley. This certainly ensures me social distance I also find when using the trolley I balance better. Obviously cycling is a no-no but if I could afford a tricycle would contemplate that! Please do NOT tell me to lay off the good red wine when in Spain OR coffee either!

Thanks in advance!

The malingerer.

My Meniere‘s is much milder than yours. My sister and I both have it, but hers is much more severe, and for her a bout can be completely debilitating for days and even weeks. As I am older than my sister I figure mine will never be as severe as hers. She has found amongst other things that a salt free diet helps - that is almost impossible on a Camino if you eat pilgrim dinners.
I havent had an episode during a Camino. I did have an episode during the night during an Oxfam 100km trailwalk event. It was about 1am, and when we got into the checkpoint I was feeling a bit dizzy and queasy and ate only a few crisps. As soon as I tried to stand up again I knew I was in trouble. The night was really black, I need something visual to focus on to help orient myself, the head torch just dissolved into the night.
All four team members have to finish for it to be official so I knew I just had to make it, we would have had about 25 kms to go .
The other 3 team members walked around me after I nearly fell in the river, and I held my sticks out widely and walked as fast as I could (we achieved more kms/hour than during the day). They were scared I was going to fall off the path, or into an electric fence. (I was too, but I just focused on moving) The momentum helped to keep me upright. Apparently I was stumbling all over the path. They made sure other people took a wide berth around me. It took about 3 hours to ease, to the next checkpoint, and even then I was still sick and wobbly with badly skinned knees through my tights. Looking back I dont know how I did it. My sister thinks my mistake was eating the crisps, and not enough water when I was already experiencing light symptoms.
It was terrible, the team knew it was a possibility for me, but in 3 other events I had never experienced it. In fact it was only the second time in public ever, usually it occurs when I am at home.
That was about 3 years ago now, and I haven't had another bad incident since.
I do take medication with me on Camino, but have never needed it.
At home I try to look up and focus on something before getting up. I avoid absolute darkness, at night I always have a curtain open so the light can come in a bit.

 

[Deleted member 76633]

the medical profession has no answers for me.

That's because it is idiosyncratic - peculiar to each individual.

As a fellow MD sufferer, I have never taken betahistines or similar. I take the view that the drugs may mask a successful identification of a remedy and concentrate on non-medical solutions. So what I have done is to change diet. No coffee, only wine in moderation (though that is a high hurdle), limited salt intake etc. Anything that works for me.

I understand there may be [invasive] procedures if a condition is severe, so taking time to manage it can pay dividends and remove the need for such procedures.

But as MD is peculiar to each individual it may or may not work for you. I'd certainly think twice about taking advice from strangers on the internet and get specialist medical advice. Informed opinion yes, but not advice.

 

[malingerer]

That's because it is idiosyncratic - peculiar to each individual.

As a fellow MD sufferer, I have never taken betahistines or similar. I take the view that the drugs may mask a successful identification of a remedy and concentrate on non-medical solutions. So what I have done is to change diet. No coffee, only wine in moderation (though that is a high hurdle), limited salt intake etc. Anything that works for me.

I understand there may be [invasive] procedures if a condition is severe, so taking time to manage it can pay dividends and remove the need for such procedures.

But as MD is peculiar to each individual it may or may not work for you. I'd certainly think twice about taking advice from strangers on the internet and get specialist medical advice. Informed opinion yes, but not advice.

Alas it is the medical profession that has me on Betahistine! I have switched to decaf for my coffee but always have full blood in the morning! I make my own wine and will continue to do so altho I do attempt moderation I agree whole heartedly that MD is peculiar to each individual as for example I cannot sleep a wink if there is the slightest chink of light unlike those who cannot bide the dark! It is often the strangers on the net who come up with lateral thinking but yes I do think twice! After all I am looking for ways to deal with it whilst on the camino and not for my overall daily life. I have been dealing with the falling-sickness ( AS USED TO REFER TO IT) for donkeys years and it is only recently that the medical profession has diagnosed it as MD! at 82 I don't hold out much hope for a cure but will just have to keep on truckin! I am an ex-social worker with the deaf and know a little about ears, balance etc

Thank you.

The malingerer.

 

[malingerer]

I know nothing about this disease state but I know it is a serious issue which as others have mentioned and you are aware of has the potential to cause injury. My only advice is when we are all able to walk again and you do decide to go please download AlertCop. It is an app that will immediately put you in contact with the police if you are injured or in a dangerous situation. I am not sure if it only works with a European Union telephone number or any other limitations. I always get a SIM card from Orange (their plan works best for my needs). If you do have an issue you can easily contact them. If you do not speak Spanish they will connect you with an English speaking person to assist you. I have luckily never used the app but I download it before each camino. You can get it at the iPhone app or Google Play app on your cell phone.
Good luck and Buen Camino.

had forgot about this app and thank you for reminding me. I walk alone and intend to do so again but am grateful for all advice that I can mull over and adapt / adopt.

The Malingerer.

 

[Azelia]

MD was a very debilitating experience for me. When it hit, I would be out of commission for 12-36 hrs; doing nothing but throwing up and sleeping. I have not have an attack since Feb 2019 and intend to keep it this way. I believe camino was one of the route to cure for me. Between Feb to Nov 2017, I had one too many attacks that once I was out of work for 6 weeks. I quit working in Nov 2017. I learnt to meditate in India. In May 2018, I walked portion of CF with my husband, Jakob (we took train and bus in some portion). Somewhere pass Saria, I just noticed that my left ear had stopped ringing -- the tinnitus was gone! At least for the moment. After Santiago we went to Finestere. I was so afraid standing on the cliff. I think the fear could have created a spin. I was so afraid. We flew home to Singapore and the camino kepts calling. We went back and this time was vDLP in Sept 2018. Somewhere near Los Tornos, there was a detour due to the construction and we had to walk a long time on the road. There was a portion that we walked along a tunnel with a supper narrow path to walk and the construction trucks were zipping back and forth. I was so scared that they did not see me. I was so scared that I would get dizzy, lost my balance, and tumbled to the road with trucks passing by at a high speed. Finally the tunnel end; my ear rang like a helicopter about to take off. I burst into tears. After that we tried to hitch hike as I did not think I could walk. There were only construction trucks passing by so we had to keep on walking on this road. After a long stress we finally got back to trail. The serenity of the trail composed me and I was able to calm my self down. Jakob thought that would be the end of the camino judging on how badly I sobbed after the tunnel. We walked all the way to Santiago.

I have since then back working again starting Dec 2018. We both long to go back to camino. I do believe the camino has contributed to curing MD for me. I never had an attack since Feb 2019 though my left ear still rings. I think the walking has taught me to listen to my body better. I learnt what triggered the attack and also felt if an attack about to come and quickly do something about it.

@malingerer -- bravo to you. At 82 I feel it is safer for you to walk with someone. With MD, I think it would be even more important to have someone with you. I dare to walk alone now. Back then, I would not do it without my husband with me. I mumbled telling my case as I don't have an advice but sharing my experience.

To others with MD -- one of the things that helped me was getting my atlas bone adjusted. Most of the regular chiropractors do not have this very specialized skill according to my chiropractor. I had my atlas fixed in Switzerland.

Buen camino Malingerer -- go with someone

 

[LornaD]

Any one out there with personal experience and tips/tricks for walking with Meniere's Disease?

I have no experience with Meniere's but I empathize with Vertigo. My hospital has a balance center attached to it that focuses on retraining the brain. I was informed that the brain has multiple ways of determining where the body is in space. They taught me to exercise my vestibular system. I was avoiding anything that caused dizziness which was the wrong thing for me. I was informed the long walk would be excellent for my vestibular retraining. It was indeed.

 

[Kiwi-family]

@malingerer i wish you were here in NZ - my almost-90-year-old father-in-law has a recumbent trike which would be perfect for you. In fact, two months ago he added a little electric assistance to help on hills - but he’s been fighting hepatitis and pulmonary fibrosis so he’s only been out for one ride. He would love to see you use it!
Please do keep pursuing activity as you are - you are truly inspirational to those of us who do not yet contend with ailing bodies. All the best.

 

[Miki Goldie]

Hi Goldie
Will people confuse us?
My name is Miki Goldie, have been on the forum for some time and have walked 7 caminos. Would you mind identifying with another nickname please.
Love
Miki Goldie

 

[David Tallan]

Hi Goldie
Will people confuse us?
My name is Miki Goldie, have been on the forum for some time and have walked 7 caminos. Would you mind identifying with another nickname please.
Love
Miki Goldie

I think the names are easy enough to distinguish. I was neither the first nor the last David on the forum and none of us are trying to claim exclusive use of the name. I wouldn't worry about it.