Author: Ménières Suicide or Survivor

Loving passionate Mother of two trying navigate my way through a new kind of life I find myself in through no fault of my own. I suffer with bilateral Ménières, on many medications and tried skull surgery to no good outcome. It’s a living hell. I am a retired primary teacher who had a fantastic career. How do people we Ménières live with this horrific sentence? That is what my site is about... me, my journeys before...during ... now! My coping strategies and not coping... It’s a rollercoaster, but that’s my life, I never know from one minute I the next how my day will be. Spinny, dizzy, sick, ear pain pressure yes pretty much always, attacks or non. Can I maintain the “I’m ok” face or not. What I will say, I want to help and support anyone, it’s a lonely and horrible journey. Nobody really understands. Unless you have been there. If I can help one person I will be happy and raise awareness of this debilitating life changing and obliterating condition that is Ménières.
My Journey Here!

The power of partners family & friends!

Ménières Suicide or Survivor

If there is one thing I have learned in my journey this far it’s that your loved ones no matter who they are, are the most powerful medication and solace in your life!

They are always there, they understand love and support you. Despite the demons you face. Even though you may hurt them on your journey.

Do not push them away through depression, paranoia or anxiety. They love you. You may think your not worthy of their love, that keeping them around is too hurtful but the opposite is true. Be honest and talk about your thoughts and feelings.

It is as hard for you as it is for them, if not harder. If you feeling out of control seek help in your GP and trust them, no shame.

If your as lucky as I am to have such wonderful people in your life then it is worth living and that is what you have to focus on.

You don’t know what the future holds unless your here to see it.

My Journey Here!

Interesting news from Nancy regards treatment…

Ménières Suicide or Survivor

3B66F9D5-2329-4E76-BB1B-C00F4C7A7E44Ali. Hi – it’s Nancy. I’ve been in touch with you through twitter. My husband has been a menieres sufferer for over 33 years. We even at one point did the ear shunting that did nothing and we actually are lucky it didn’t make it worse because for many it does. I have helped a few people over the years by speaking with them and discussing some of the things that have helped my husband. Recently though we went through a really rough time and he was bedridden for over 2 months. At that time I found Dana whites interview and his success using the regenekine treatments. We live in the United States and did not want to travel to Germany so I investigated and found out that the doctors at ny spine where trained by the German doctor who invented it and where doing this procedure in ny. Now there is some backstory because the doctors at ny spine work with every major athlete and do this procedure for orthopedic use. Most of Hollywood also visits for orthopedic use. Their offices are filled with thank yous from every major athlete out there. So how did they find out it works for menieres patients ???? I sat with the doctor there and talked about it for 2hours. It turns out it was mostly by accident. Dana White is an example. They realized that when they did the injections in certain areas that people who had complaints also of vertigo, dizziness and menieres where helped. Now they have worked to perfect the injections to specifically work on menieres patients. They inject the jaw – upper cervical vertebrae and very close to the ear area – along with other sites and over the course of a few weeks as the internal inflammation goes down the patient has relief. My husband has not had an attack since so far. He is doing much much better. The doctors there are fantastic and understand menieres and the suffering of patience better then any ENT we had ever seen.
Once you understand that any disease has an inflammation component it’s easy to understand why this works. The one thing I would say is that the longer people wait the harder it is to get relief from and that in my husbands case I wish we would have done it 30 years ago( it wasn’t developed though) – it took about a full month or two after to feel the full effect however the doctors say it varies greatly. Dana white felt it immediately. Some within a day or two , some within weeks…. everyone is different . The procedure is not cheap , it could run anywhere from 10-20 thousand in the USA. In Germany it’s cheaper. However – I will say this- if I personally was suffering from this horrible disease – I would do it no matter the cost – I’d put it on a credit card if I had to— because getting your life back is worth every penny. Honestly , everyone knows you can’t work with menieres – so just the fact that he could get back to work made it worth it. Ny spine is amazing but hard to get an appointment because it’s packed with major athletes. So at the least I’d call there and see what the timeframe is to have a consultation with dr. Caplas. – he is who does the evaluations. Dr schottenstein is the neurologist who actually does the injections once your blood is spun. It’s a natural process. Nothing to be frightened of and they take amazing care of you. Feel free to share this info on your website. Believe me I know what menieres is all about- I’ve lived and breathed it for the last 20 years. I would like people to know I am not associated with them in any way and was just lucky enough to find them. You should also know that the procedure is FDA Approved only for orthopedic use so it’s not like they advertise what they have come to discover about the menieres issue. They simply can’t. I do know that it worked for us first hand and if it wasn’t for Dana white putting it out there I’m not sure where we would be. Also – it’s not stem cell- they take your own blood – spin it and then create a actual serum . They serum reduces all the inflammation . Again – speak with dr. Caplus – he can explain it the best. Also this is not prp – where they just spin the blood and inject that back in. It’s a whole other level of medicine and is cutting edge and that’s why it’s price tag is so high. Worth it for anyone suffering to find out about. I should also side note that when I called they place in Germany and mentioned menieres they where a little weird about it , probably because it’s for orthopedic use – not sure- but I know that Dana white did it there and I spoke with this doc about it and even though Dana did it years ago he is still doing amazingly well. .
It’s worth it to contact them
This is all our personal experience and I wish anyone who reads this well. I will also side note something important. If you are a menieres sufferer realize decreasing inflammation. Is key. I also keep my husband on a very very low carb paleo diet- feed him absolutely nothing that comes from a box a bag or anything with sugar. This has also over the years provided incedable relief when nothing else worked.
No breads, no grains, no legumes, no sugar…. at all.
Just fish and veggies and meat and veggies some nuts some seeds and very minimal non sugary fruit.

Hope this email helps who it needs to!!!! With love NANCY
(P.s.- I am not a doctor – I am not a nutritionist all views In The ubove email are just my personal experience and views).

AUTHOR: NANCY

SUBJECT: [Ménières Suicide or Survivor] Contact

Uncategorised

Ménières; anxiety and depression

Ménières Suicide or Survivor

Ménières has for me completely changed my life. I was successful teacher with an amazing career I had worked exceptionally hard to be the best I could be. Now I can not bare to be in or around the school environment. I am no longer the person I once was. This is impossible to come to terms with… so I try to lock it away and embrace what I have now; which isn’t much but dispite the cloud that is Ménières I have to remember there is always a blue sky above the clouds! 

Sometimes it’s hard to remember that! 

Menieres is such an unpredictable condition you can’t make ridged plans as your condition can change so quickly. So can your anxiety levels. Your fight and flight (like the feeling you get if your attacked or confronted in an argument, or go down a drop on a rollercoaster)  kicks in, this level of panic starts as the vestibular system within the ears can’t process the information to the brain because the ears are filled with fluid. Your balance becomes affected thus affecting your abilitiy to process the movement of others, depth perception and noise around you antagonises the vestibular system. If bright lights are thrown into this situation you have a recipe for disaster. This is where Valium (diazepam) is prescribed for patients with active Ménières to control this flight and flight, we feel no effects of the Valium it mearly takes the edge of the anxiety caused by our faulty feedback.

I have been prescribed anti depressants on a few occasions now as I had hit crisis point. Unable to cope with my condition only seeing one way out! (Not living with it anymore) The sad truth is the suicide rate for people with Ménières is very high as there is no cure and no real way of dealing with it. I myself have a very close relationship with my GP surgery and an alert on the system where if I need contact with my doctor I can see or speak immediately. I have found this necessary especially after my failed surgery. Then again recently when I went into yet another downward spiral. This is when I decided to set up this site by way of support and therapy. Although I must admit it’s been tough to do.

I know I’m not on my own in this, if you have very active bilateral Ménières suffering constant attacks, daily spins and imbalance and have limited quality of life then you will understand. I appreciate some people are unilaterally affected and may not suffer in this way, you are very fortunate. But for those out there who are… reach out, don’t suffer alone, you are not!

When you find yourself making plans of how you intend to end your life… you need to seek help immediately! You need to seek help! When I was at crisis point and making plans, I wasn’t talking to anyone… this is the dangerous zone! At that point you have gone past the point of feeling, your numb, too depressed to think or care!  I made myself go to the doctor, don’t be feared of loosing your children, don’t be fearful of judgment. Your seeking help. It’s ok. I sought help for my children that’s the only reason. I need to be here for them. I felt terribly guilty for not wanting to be here because of this horrible condition. But how would they feel about me if I did that.

To sum up Ménières causes dreadful feeling of anxiety and depression, no there is no cure, but some days are ok. You have to make the most of them. Embrace the sunshine (going and standing in the sun saved me once when I had made a plan to end my life…) and remember there is a blue sky above those clouds!

You are never alone! Seek help, there is no shame in getting help. You need it…

What an ATTACK is really like!

What an ATTACK is really like!

Ménières Suicide or Survivor

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To try and explain a Ménières attack to someone who has never experienced one is exceptionally difficult. But this is as best as I can do.

Your tinnitus changes pitch, pressure in your ears increases. You begin to violently spin in all directions (much like when you have had too much to drink, then your sick then it stops and you usually pass out) well with an attack you hit the floor, except you have no real idea where the floor is in relation to your body. You feel like your being thrown about, if you try and communicate your needs to someone you can’t because you can’t speak, the spinning is so violent you can’t move or speak or think. You feel pinned to the floor. If something moves you you feel your falling off a mountain. The sickness is relentless, if you had anything on your stomach even from hours previous deep down in your gut it’s coming back as the wretching with make it come up! Despite the strongest anti sickness pills you can have. It won’t stop the sickness. The continued feeling of being thrown about on an endless rollercoaster day and night. Eyes open shut with no relief  it is traumatic. You even see shadows coming at you. When your eyes are shut they are rolling in your head as the spinning is just out of control. All you can do is wait for it to be over. Weight helps, I have had people lay on me to help me feel grounded, I have a weighted blanket made specially for my height and weight to put on when I’m spiny or in attack to feel some feedback that I’m not being thrown around. They are a good investment.

I have lost days and nights like this, no concept of time. Unable to get to a toilet, function and take care myself. Unable to keep anything down. Just spinning violently. So I guess if you were going to get close to empathising you could strap yourself onto the big one at Blackpool or another ride like nemesis. For at least 4 hours with or without a blindfold and see how you cope. I also say it’s like your worst whitie while on a rollercoaster! These can last days. When you come round your hearing has deteriorated further and you have to fight again to regain your balance, the hangover from the attack is not pleasant either. The trauma and confidence lost during the attack and fear/anxiety of triggering another stays with you too.

I recall staying overnight with my mum, and wasn’t in my usual routine having tables by my bed, I had left my handbag downstairs. An attack started! I managed to get to the bathroom to be sick… but then I lost the night as I couldn’t get just across the hallway to wake her for help… I couldn’t speak, couldn’t crawl. I tried but wasn’t getting anywhere completely lost, I  was so disoriented. Violently spinning, It was literally 5 paces… but that’s how bad it is. I couldn’t lift my arms off the floor to put one in front of the other to drag myself. I don’t know how long it was before she found me. In a mess obviously. On the floor. But to look at someone with Ménières they look fine. It’s all hidden. Miss understood.

Thats why I’m building this site, to create awearness. To help others to explain to their loved ones what they go through. It’s lonely, it creates anxiety and depression and we need help support and most of all understanding.

Please.

Coping Stratergies, Uncategorised

Coping Strategies

Ménières Suicide or Survivor

Over the year’s I have found a few things helpful. To get through those both day to day spinning off balance yuk days and full on attack days of hell where all you can do is batten down the hatches and wait for it to pass! 

  • Walking with weigh in your backpack, it helps to feel more grounded
  • having something in your pocket hold, like a small smooth stone or  treasure. My balance system is completely faulty so I find myself constantly holding onto myself even clenching my teeth! (Cheese Gromit)
  • Flat thin shoes.. I could do with a constant supply of converse trainers, as they are good to feel the floor and help maintain balance.
  • SUNGLASSES a must… they dull down movement and motion. My eyes can’t feed back to my brain as fast so I get a trail thus feeling sick constantly so the glasses slow this down. FLASHING lights kill me.  Christmas and dark evenings are bad, I have no balance at all in the dark. Autumn leaves (picturesque for some- a nightmare if they are falling or all over the floor ) for someone plotting their steps and snow as it’s like a moving picture. So those once enjoyable beautiful scenes become sickening and anxious times, causing spins. Glasses are helpful for all of these! Although you do get funny looks, again people’s perception and Judgments in these instances can be difficult to deal with. I have encountered various situations where I have been questioned wearing glasses indoors. No it isn’t because I’m posing I want to be able to function at some level!
  • Portable medical kit.. I carry my extra super power anti sickness, that I take ontop of the three I take daily. Valium for when my fight and flight kicks in when in public places or spinning starts. Finnaly the sleeping tablet in case I need to try and know myself out somewhere in case of severe attack. I have all this data in my iPhone. My children know where my medication is as they sometimes have to retrieve it for me and my eldest is a young carer.
  • While on medicine… blister packs yep you got it! The ones like your grandma might have. Well that’s me. I’m lucky if I can remember my meds. I’m that spinny all the time. So I have them made up into packs. So I know what I’m having and when. It’s also useful with attacks as someone coming to help knows where your up to just by looking at the pack. Tuesday afternoon, yes you have had your meds! I would not cope without them. People who know me will say.. “ have you had your meds?”   I’ll check as I can’t remember! Oops!!

Its hard when when you spend your life on a roundabout trying to cope!!

  • Low salt, I have definitely found that a high influx of salt will definitely boot off an attack! No question as it changes the fluid in the ear!! Fact! Also watch out for sparkling water… again sodium, and I can’t take any cold and flu remedies or cough syrup as the soluble paracetamol triggers attacks again salt!
  • Barometal pressure changes… I’m the barometer… I can tell you it’s going to rain.. before it does… and will challenge the bbc weather app! I’m always right! Unfortunately nothing can be done about this! Change in pressure screws up people with Ménières! FACT! Winter is coming so it’s gett even harder. Many will suffer with more anxiety and depression as I am myself with increased attacks due to the weather. Which of course we can’t control.
  • Excersise, keep challenging your balance… after every attack you have to start again… pick yourself up.. regain your balance and retrain your brain. To add insult to injury you hearing is depreciated with each attack! It’s so cruel. But keep challenging that brain try and keep going! I can’t eat now post skull surgery while I’m walking I just vomit. But I need to move so I walk and move when I can. I eat at night when I’m still.

PLEASE leave your strategies in the comments so we can help each other!