About

This is a blog about my daily life as a Meniere’s Disease patient who’s faith in Christ helps me stay strong and guides me to helping others.

 

 

 

My Story

I have been suffering with Meniere’s disease since 1998. The first 2 years I saw several doctors that couldn’t figure out what I had. Finally the 3rd doctor said I had Meniere’s, after I took folder full information that I researched, and was giving a water pill & meclizine. I was ok for about 3 years but then I started having severe 14hr attacks. So I was given Valium. Which did not please me parents because they heard that Valium was very addicting. When I took it I was ok for two days but when the third day came I had the worse 14hr vertigo attack that I ever had. It think point I was married and there were days when I was home alone and after 14hrs how was I going to the bathroom. I rolled off the couch and crawled to the bathroom and pinned myself against the wall. My husband had come home and saw me laying on the floor. Then I was at the point I could no have any salt or caffeine. I thank God for My husband because he had to make everything I ate from scratch. I felt bad because he ended up eating the same thing. It was some pretty bland stuff. I also could not eat any red meat. If I did it would almost instantly start an attack. So after the 2 months I lost more than 20lbs. All the doctor said he could do was to give me drugs which were not working. Luckily my sister in-law was going to the University of Florida studying to be a physician’s assistant. Her roommate was studying in the ENT program. My case was given to the ear surgeon that was also Chairman of the Department. He wanted to see me as soon as possible. I went to Shands Medical Center and found out that I lost 30% of my hearing in my left ear. He told me about different surgeries, antibiotic treatments but they would destroy any hearing that was left. Then he told me of a new treatment that nobody in his office had tried before, the Meniett Device (http://www.medtronic.com/patients/menieres-disease/therapy/index.htm) and there weren’t any major side effects. I said I try anything. In order for the machine to work though a tiny Tympanostomy Tube (http://emedicine.medscape.com/article/1890757-overview) had to be inserted into the ear drum. When that tube was in place the fullness disappeared like letting air out of a balloon. I started out using the machine three to four times a day. After a few months I was only using the machine once a day. Now I rarely use it. But when the tube naturally comes out I have about a month to get a new on inserted before the vertigo attacks start again. As of today I still take the water pill and I have the meclizine on hand just in case with the Meniett device always handy. I only eat red meat once a week cause anymore than that will make me feel dizzy. I try really hard to keep a low sodium diet, about 1000mg a day and I’m now able to drink caffeine but only a few a week. As long as follow this diet I feel great. But being a Christain, in the last few years I feel called to help others cope with the hidden disease. The worst thing one can feel is being alone. I first took over a Facebook Support Group that has over 2000 members. It is open group which mean anyone on FB can see the posts. Some had issues with that due to the fact hey have family members or friends that just don’t understand & think it’s fake. So I decided to create a private group where people can feel more safe & willing to open up able this terrible disease. Sure it’s not cancer or anything life threating but many patient loose their quality of life. They can’t work anymore or even drive in fear of having another attack. Marriages fall apart & some feel so depressed that they try to commit suicide. I feel like one of the lucky ones. God has given me peace. In the need few post I will explain what is currently go on.

Meniere’s can be a very scary disease. The biggest thing is realizing you are not alone in this. For me if I can help one person feel better than all my suffering was worth it. So I will do my best to give readers daily updates so you can understand what a Meniere’s patient goes through, good or back. Please feel free to ask my anything or even a prayer request. Whether you believe in him or not. He has helped me & now he is telling me to help you.

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12 thoughts on “About

  1. I have known your world and your God. We have that in common. I’m coming to a more active phase of this disease and it is dreadful.

    • I am so sorry to hear that. As hard as it may get remember you are never alone in this battle. God is always there help you through it & so are many other Meniere’s patients. I will keep you in my prayers that things get better. It has for me & it will for you.

      • What do you contribute to helping your Menieres? I am seeing a specialist in Menieres tomorrow at 2pm. I don’t know why, but I feel I will only walk out more frustrated. One miracle, and it had to be a miracle, I was able to run at speed and grab a three yr old who was inches from certain death. I had no reaction, menieres wise, inside I was a mess, and even throughout the rest of the night, no attack or even slightly dizzy. The next day however was another thing. But I do give God the glory for giving me that ability to find the child and run and protect him.

      • Praise the Lord you were able to help that kid. The biggest thing for me is getting the Meniett device & the tube in my ear drum. That was the only thing besides drugs that stopped the 14hr attacks every other day. Surgery was not a good option because I have only lost 30% of my hearing & I was 23. To this day the severe attacks have stopped as long I have a tube in place. I was using the Meniett in the beginning at least 3 times a day. Now I can’t remember when I used it last. Now I do have uncomfortable days before my period starts, when I have a sinus infection, or an allergic reaction medication that is used to treat the infection. I do limit my salt & caffeine. But mainly it’s the Meniett. I will tell you that it is expensive if your insurance will not cover it. I paid $3700 for mine back around 2002. I have heard there more options available for purchasing & some insurance will cover most of the cost. But I would but it again in a heartbeat to get my quality of life back. There are surgeries & injections you can try but all the articles & my doctor at Shands Medical Center said you will loose all your hearing in the infected ear. Here is the link to the Meniett Device. http://www.meniett.com/
        print the information out & take it with you when you go to the doctor. Don’t let him tell only drugs will work. If you don’t like the response from the doctor, check with another doctor. I got several people in my Facebook Support group to try it & they said the attacks stopped. I hope to hear the same great news from you.

      • I believe I contribute a lot by talking to my ENT doctor & trying new things & my doctor discuss what is working & what not Then telling others like the people in my 2 Facebook support groups what worked & what didn’t. Sometimes just listening & letting someone know you understand what their going thru is enough to help a person suffering for Meniere’s.
        I am only expressing views from a patient stand point & helping people see that if your involved in your own health & have a great doctor, you can find some relief. I truly also believe God is a huge factor in my healing. He is the one that guided me to share my story so that I could help others.

      • Thank God you were able to save the kid. As for what I have to contribute is I’ve been dealing with Meniere’s Disease since 1998 when I had my first attack. It took 3 doctors to finally say I have Meneire’s then another 2 to help control it. Ultimately in 2002 I believe, I went to Shands at the University of Florida Gainesville. I was the first person to try the Meniett Device. That has done wonders. Now I have a great local ENT that is open to the information I find online. He told me “I know you take everything I say & double check it” & he laughs. I told him once I had no problem trying new things because ultimately it could help many others. I am not a professional but I hope to give suffers hope by giving them a patient’s point of view. The disease is very challenging at times but one can live their life almost as normal people do. I have been lucky enough to always have a full time job & drive anywhere. I feel I have very little limitation because my Meneire’s controlled. Now that does not mean & don’t have uncomfortable days. You can’t avoid airborne allergies like grass unless you wear a mask all the time. Plus when you work with others you could get sick.

  2. I agree about going to yet another doctor. I recently took control of my disease with the help of my nurse friend. I have been on a raw food diet with no sugar. It was very tough at first, I still crave m&ms. I notice a few subtle changes. My energy is a bit better after an attack. And I recover faster. Praying helps, and a positive attitude. Most days. Other days I’m just to sick to even think about anything else. Good luck!!!

    • Story of successful recovery of a meniere patient
      This is merely a message to
      1. All meniere patients and their relatives.
      2. All ENT doctors.
      3. All homeopaths.
      4. All medical research scholars.

      Patient’s description and History
      Mrs. Mamta Chauhan 40/F
      C/O episodes of vertigo from 13-14 years before,initially 1-2 episodes in 2-3 years. Frequency of episodes increased in March 2005. Vertigo with vomiting lasted for 20 minutes. Repeated by head movement and bending gradually tinnitus appeared. Doctors suggested for audiometric and other investigations. This situation remained unchanged for last 9 years. They concluded it as incurable meniere disease.
      Treatment given(Not Worked)
      1. Tab Vertin (Betahistine) from 8mg-24mg once daily to thrice daily almost continued.
      2.Tab Stugeron occasionally.
      3. Tab Alprex occasionally.
      4. Different homeopathic medicines.
      5. A number of enchantment activities.
      With this other different treatments told by nears and dears were given all in vain.
      Present Treatment(Worked)
      This problem is due to the accumulation of fluid in inner ear. It was observed that during glycerol audiometry the problem was reduced. So to reduce the extra fluid osmotic diuretics were given (mixture of urea 5mg+glycerol 10ml single dose weekly). This reduced the problem to a great extend but it’s taste and feeling after the dose was not very agreeable. Therefore its herbal substitute was selected. One of best herbal diuretics is dandelion (Taraxacum officinale). It is available as homeopathic medicine. There has been no episode of vertigo since the first dose of diuretic was given.
      CURRENT TREATMENT
       Taraxacum mother tincture 10-15 drops in water 3 times a day.
       Caffeine free diets i.e. no tea, no coffee, no chocolate only green tea and chicory.
      Warning
      • Before starting/changing any treatment always consult your doctor.
      • Excess dose of urea is harmful, in case of kidney problem it should not be used.
      • Taraxacum and chicory both increase bile flow so if there are any problem of gall bladder these two should not be used. You may use other substitute.

  3. I was diagnosed with Meniere’s Disease a year ago. For about 2 weeks I was getting light headed and walking out my house would cause me to have a panic attack because things didn’t look like they should. (Everything seemed far away). Finally went to ENT who diagnosed me after monitoring me. I’ve looked up this disease and I cannot find my symptoms listed. I don’t get dizzy, I just feel very light headed at times. I still have bad anxiety and I think it may because I can’t find my symptoms listed and fear I’m misdiagnosed. Can you tell me if anyone with this disease has the light headedness but does not have dizziness? Any information regarding this would be helpful.

  4. There is an Old Gospel song that is called BE NOT DISMAYED. By Civilla D. Martin.

    The lines read:
    Be not dismayed whatever comes, God will take care of you.
    Beneath his wings of love abide, God will take care of you.
    God will take care of you, through everyday, over all the way;
    He will take care of you. God will take care of you.

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