Internet Searches for those in remission or “cured”

I have hesitated to search the internet for Meniere’s chat groups in the past as I was wary that I would only find the worst cases and get discouraged. Why would a person in remission go to a Meniere’s chat?  Chats are for those seeking any relief, it seems, and in the worst place, not for those whom have moved on with their lives.  Those of us who are stuck in dizzyness, nausea, pressure in the head and the anxiety that vertigo can come on at any time are seeking the answers we crave and the knowledge that it’s not just “in our heads” and we aren’t crazy!!  I did find one web page where the author had been cured of the majority of his symptoms and had moved on so I’ll share it because I found it encouraging:   It’s called “My Balance Disorder Cure” and is written by Alan Goldbaum. . .

http://www.goldbaum.net/balance/index.html

In reality though, the chats and blogs regarding Meniere’s have been very helpful and uplifting if I limit my computer time.  It’s easy to become negative if you read worst case scenarios all day long.  This is a “one day at a time” disease and I try to focus and not dwell on how awful I feel.  This sounds so petty but it does make all the difference!  Keep your balance and stay strong fellow sufferers and those supporting sufferers. . .  Lita

When I learned about the potential rule in Manhattan, requiring restaurants to post all nutritional data,  I was a little stunned because cooking, after all, is an artform and when throwing in ingredients, wild abandon comes to mind, not measuring with documentation.  However, now that I fall within that category of having a disease and my consumption could mean going on with my day versus collapsing in a seizure-like state with hours of vertigo, vomiting and the hours or days to revoer, I now feel a little less compassion for the chefs, and a little more compassion for the consumer.  If said consumer is allergic and the meal can be life-threatening or even if said consumer merely experiences discomfort from the wrong foods, we really have the right to know.  I now know what it’s like to bite into something and know whether I can enjoy it without anxiety, versus not really enjoying it and worrying later if I should be downing several bottles of water to flush the excess salt from my body, or more specifically, the vestibular balance center. I recently ate asian food for the first time in ages.  I spoke to the staff who assured me, that everything can be prepared to accomodate special diets.  No salt would be used whatsoever in the preparation of the meal and low sodium (ha!) soy sauce would be served on the side (I’m saying “ha” because low salt soy sauce still has around 500 mg per serving).  But at lease at this restaurant, it was optional.  Even on their printed menu, there was a “No Sodium, No MSG” page of choices.  I dined happily and oozed garlic from my pores for days.  Flavor does not need to come from salt alone.  Yes, it’s bland, but just like the kid who is allergic to nuts and doesn’t even want to be in the same room with an unidentified cookie if he thought of the consequences (I have met kids like this).  It’s not worth the alternative.  I am completely repulsed by anything that brings vertigo to mind.  Yes, I will make adjustments to my diet and my habits and get the hang of this.  I will learn to cook some of my favorites at home.  I have dishes that I am determined to learn to make so I can eat them again:  chicken chimichangas, potstickers, yakisoba, pulled pork barbecue sandwich, etc. (just not all together at one meal!). 

Other triggers:  I have been feeling that I should really take more seriously giving up coffee.  I switched to decaf. a couple of years ago but occasionally ask for a half-caf.  For awhile I had great results from a small glass of diet coke and was convinced that it dried out my sinuses to have a little caffeine daily, but now I’m not so sure.  I have not had a great last couple of days and have noticed that I had quite a bit of coffee also a little more dairy than I’m used to, plus some chocolate.  These are all known Meniere’s triggers, although I haven’t given them up completely.  I switched to soy milk in my morning cup of decaf. about a year or 2 ago.  I gave up most dairy, although I still eat a little bit of cheese.  It might be time to give up a few things that I have been clinging to, just for the sake of experimentation.  I felt great after my last ear injection but today felt a little “off” again.  It’s only been about 72 hours since the injection, so I’m a little disappointed it wasn’t the miracle cure I was hoping for.  I have mentioned previously that my last steroid ear injection got rid of vertigo for 17 months for me. Giving up the caffeine, chocolate and dairy are just ideas I’m mulling over.  The coffee would be the absolute hardest for me.  I am a coffee lover.  Forgive all my rambling, but previously I never gave much thought to food and was never too much in tune with my body.  Now I really need to pay attention to what is causing all of these crummy symptoms and it’s like a puzzle that I’m constantly trying to solve in my head.  I’m putting it out there to either help others or to get advice from others.  It has helped me immensely to take my symptoms to the internet so that wonderful people can write and share their experiences who are battling the same beast.  I think we just really all want our lives back and my daily hope is that I never have vertigo again and I would never wish it on anyone else either.  Cheers to beating this and living life!

I am writing this in the morning and it’s been less than 16 hours since my steroid injection in past the ear drum, and already I feel relief.  My tinnitus is still hissing, but today I woke up to feeling somewhat  normal and don’t have the constant pressure in my head that I normally can’t quite articulate.  I’m not dizzy or nauseous in any way and I feel good.  I can tell there is relief with my kids too because they always feel a little anxious when they know I’m not feeling great.  I’m probably a little easier to be around.

A GENERAL FEELING THAT I NEED TO BE A LITTLE SELF-ABSORBED

This disease has made me a little crazy because I really need to be in tune with my body and this doesn’t come naturally to me.  I need to wake up and assess what meds I need to take, whether I should go anywhere (I work from home, but have three kids to take to sports, lessons and appointment, etc.).  We live in the country so I can’t always rely on other parents to take my kids places.  Thank goodness for texting and cell phones so I can let the kids know “mom’s a little dizzy today, can you hitch a ride to soccer?”  This makes me feel guilty, but I know this is the new reality and so do they.  I know it’s time to resign myself to having “off” days.  If you’re a private person, like I think I was to some degree, I guess it’s a little bit of letting go of that and realizing that you have limitations and occasionally need to accept help from other people.  I so appreciate understanding people.  Usually all I have to do is mention the word “vertigo” and people seem to either have experienced it or know someone who has.  It took me awhile to figure out how to explain to people in the fewest words that I have limits.  Sometimes I have overexplained and then feel like they never want to talk to me again.  So now I keep it short and just tell people I have had problems with vertigo and leave it at that or if I know them at least a little bit I might make a little joke about not wanting to embarrass myself by projectile vomiting – that those life of the party days were long gone after college.  Usually I can tell by the look on their face if I have said too much, but hey, at least I am learning to laugh at myself and see that this disease doesn’t have to mean I can’t live and enjoy myself in the process. Go and make it a great day – forgive yourself, forgive others and enjoy life.

I’m feeling much better after resting up from the field trip with my daughter’s class.  It took alot out of me but I’m so proud of myself for making it a whole 13 hours with 5 and 6 year olds on the train, in the city and to the aquarium and then back.  I had my Ziploc of meds. and had a good day and then rested all day the day after.  Here is a photo from the trip. 

Seattle field trip

Make it a great day!

I went on a field trip with my kindergarten daughter yesterday.  My first all day field trip with children since my initial illness and diagnosis.  No one know how hard it is to cope daily with this stupid disease unless they are in it.  It’s crazy to prepare onesself mentally, emotionally and physically to spend 13 hours with my 5 year old.  The scary part was taking the train and not having the safety of my car in which to retreat if I got dizzy or worse.  I took a huge bag of provisions and meds. in case.  I only felt a little dizzy once.  It is the day after and I feel like I’ve been hit by a bus but I am proud of myself.  When I was younger I used to spend a couple of days recovering from a rough night out or a party, but now I am faced with feeling wiped out over a silly event like a field trip with 25 kids.  The reason I was willing to try was that I was only responsible for my own daughter – each student brought their own parent.   I figured my kids have been through enough watching mom go through all of this, so I focused and kept it together for her.  We had a great time. 

I’m thinking of switching ENT docs.  Mine is not supportive.  I may have to drive 2 hours to see a doctor I really like, but I think it’s worth it.  The pressure in my ear has been increasing and the ringing has been getting louder for almost 5 months now.  I’m not sure when it’s time to look for a hearing aid.  I go through periods where I ignore everything and try to live my life and then periods where I try to pick apart each symptom and figure out what to do about it.  I tried the “water pills” but my blood pressure crashes and I feel pretty awful on them.  I was mistaking this for dizzy spells but over time realized, I was feeling woozy from the meds. not from Meniere’s symptoms.

Just read that clinical trials are being approved to get some new injection treatments aproved by the FDA. 

FDA clears Otonomy’s IND for clinical trial of OTO-104 in Meniere’s disease patientshttp://www.news-medical.net/news/20100217/FDA-clears-Otonomys-IND-for-clinical-trial-of-OTO-104-in-Menieres-disease-patients.aspx 

This is encouraging.  At least there is research being done.  I have debated trying Serc but the FDA hasn’t even looked at it in years so it won’t be approved any time soon.  Serc is legal in Canada, 40 minutes north of me.  There must be some irony in that somewhere.  If you suffer from Meniere’s disease, you are not alone.  I feel angry and alone daily in this, but try not to stay stalled out there for long.  Go and make it a great day.

It started with my eye.  It was itching and burning and I thought I must have some kind of an infection.  The only relief was to press my closed eye-lid (apply pressure).  I went that afternoon to the opthamologist.  It was viral and unfortunately, there was nothing to do but take drops for pain and wait a couple of days.  This seemed simple enough.  The virus travelled (I didn’t know they did this).  Within a week I had a chest cold.  I was training for some upcoming race, so I tried to ignore the cold and went out trail running — in the rain.  I’ve done this a thousand times before.  In Washington State when the rain sets in, if I stayed in every time I had a cough and runny nose, I’d never go anywhere.  Anyway, the cold got worse and worse and I went through 2 rounds of antibiotics.  I probably had a sinus infection too, but the doctor couldn’t really find anything.  This all took place from late August until the 3rd week of October.  In October I was riding as a passenger in my husband’s car while he was taking me to pick up my car from the repair shop when the whole world started WHIRLING.  I screamed and told my husband to stop jerking the car around.  He said he wasn’t and got a little annoyed – understandably.  Throwing up soon followed.  We were scared so Walter took me to the emergency room.  This was my first episode of vertigo.  It’s really scary and I wouldn’t wish it on anyone.  I was given an i.v. of fluids and motion sickness medication and diagnosed with “labrynthitis” and sent home a few hours later.  I had never heard of labrynthitis.  I thought they made it up because they needed the cot.

I was referred to an Ear, Nose and Throat doctor.  He spend exactly 8 minutes with me, ordered a hearing test and told me “welcome to the world of Meniere’s Disease”.  He gave me some pamphlets and sent me on my way with some prescriptions for stuff I’d never heard of.  I thought he was off his rocker and I was irritated that he only spent 8  minutes with me and followed that with a diagnosis that would change my life.

I went to Seattle for a second opinion to a doctor I trusted because he had removed 2 of my daughters’ tonsils.  He said it is impossible to diagnose Meniere’s disease from one episode because really Meniere’s disease is something that has to happen over a period of several episodes with many symptoms.

Sidenote about vertigo:  you feel like you have been run over by a truck for about 2 days after the attack and the vomiting.  It takes everything out of you and you sleep and drink fluids for almost 48 hours after the spinning stops.

In February I was volunteering at my church and felt a little queasy.  The room where I was standing had no windows and I started feeling sick.  I started to head to the restroom and had to grab the wall.  It was like I was drunk.  I was staggering.  I made it to the restroom and everything was spinning and I soon was throwing up.  This lasted for almost 2 hours.  In a relatively public place, this is no fun.  My neighbor came and drove me home.

Over the next 10 months I never knew when my world was going to start spinning.  Sometimes it came on with panic or stress, sometimes just the environment.  Once I thought I bounced a check and went to my computer to look at my on-line banking but by the time I started getting upset about it, the whole room was spinning.  Another time I started feeling really funky in a big box store.  The aisles were so tall and narrow and the floors were shiny and it just made me dizzy.  I couldn’t go in there again for months.  I haven’t worn contacts in almost 2 years because whenever I try, I get dizzy and I’m afraid I’ll get vertigo.

In the meantime, I did go back to a 3rd Ear, Nose and Throat doctor, and did accept my diagnosis of Meniere’s Disease; although, because my case was a little unusual because my symptoms began as a viral attack I had a hard time accepting it would not go away as suddenly as it came on.  My doctor was convinced that because I had had allergies in the past, that I really needed weekly allergy shots.  I tried this for a year and only felt worse – so I quit.  I think he was just trying to make money off me.  I had previously been tested and my tests were inconclusive by a previous allergy doc.

Over time my vertigo attacks were increasing in number and duration.  The worst attack to date was Christmas Eve 2008.  The spinning lasted over 6 hours and I had had three attacks in one week.  I had lost 13 pounds from all the throwing up and felt like I had been steam-rolled.  I finally saw a different doctor in the same practice who asked me if I’d like a referral to go down to Seattle to see a specialist.  He knew a doc. that was reputable and known for speaking on this disease.  I jumped at the chance.  Within a couple of weeks I had my visit with the specialist in Seattle and he gave me an injection into my eardrum.  The pain was excruciating.  I was in so much pain I barely remember driving home.  I haven’t had vertigo since this injection.  I still live with symptoms – my right ear rings (this comes and goes) and I have partial hearing loss, but I haven’t had vertigo in over a year.  I am on a low salt diet and can’t have more than 1,000 mg. of salt in a day or I’ll get dizzy.  Did you know that ear pressure is similar to blood pressure and that salt can affect your hearing and balance the way it can increase your blood pressure??  I didn’t.  It’s difficult to eat out at restaurants,  but we manage to find things on the menus that will work.  Even the healthier restaurants with all organic ingredients still manage to sneak lots and lots of salt into their menus. I hope to blog more on the effects of salt in the foods we eat because it’s so unnecessary and infuriating.