Found on Pinterest
Found on Pinterest
Here is a diagram I found on what a normal ear looks & one that is affected by Meniere’s. Many people, including myself take a perscription water pill to help control the extra fuild that might be building. Between low salt, caffiene diet, the water pill & the tube in my ear drum, the severe attacks stay away. But just with any illness each person may have other triggers. There are some that fall which are call Drop Attacks.
No matter what, don’t stop fighting. I have Meniere’s but it doesn’t have me.
Everyone is affected differently but for me I think it was a combination of an infection from falling in dirty Marina water & allergies.
Photo is from www.slideshare.net
So it was brought to my attention that I post all these bible verses but nothing new about me & my Meniere’s. To the person made the comment, I truely thank you. Sometimes what we are thinking as helpful doesn’t always come across the exactly the same. My faith & Meniere’s, I believe go hand in hand. The disease is mostly controlled & I am emotionally at peace because my faith got stronger. Now I’m not saying you must turn to Christ to be healed. We each have to decide on our own what we want to believe. The only thing I want to do is give the person reading this hope, that it will be ok.
For all the new followers that don’t know my story here it is. I posted this back in 2013. Can’t believe I’ve had this site that long already.
“I am 36 years old and 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.”
So jump to today & as long as the tube stays in my ear drum, still no attacks. The biggest thing I deal with now are airborne allergies. There has been studies linking allergies & Meniere’s. I was tested & was positive for 6 things, 2 types of dust, 2 types of grass, American cockroach, & cat dander. That being said I have 3 amazing cats. The nurse said that some people end up getting immune to their cats. I think cat dander is the least item I am allergic to. All the allergies can be a challenge when you live in Central Florida. Already I have seen the yellow pollen pile up on cars. Each year it comes earlier & earlier. But I push through the dizzy moments, sinus pain & pressure. Every morning I wake up & when I look at my phone there is a bible verse of the day. To me it is amazing how God knows when you need support. The verses I post almosy daily help me stay positive. When I sometimes get a tiny dizzy spell because the inflammation in my head is so bad, I use to freak out & start crying because I instantly thought, oh no a Meniere’s attack is coming. But I might panic for a second because it will be temporary.
So with all that here comes the part where everyone reading asks questions. Tell me how long you’ve struggled with Meniere’s. What treatments have you tried, & of course ask me any questions so I can try & help you. Now I will answer the questions based on my experience. Maybe give you some suggestions to try or questions you should ask your doctor. No question is crazy, unless it’s an inappropriate one.
When someone tells you that you now have Meniere’s Disease it can be very overwhelming. I hope this chart will help you understand it a little more. While you think your life is over I can tell from my personal experience that you can control Meniere’s & live a normal life. Feel free to ask me any questions. My answers will be based on my experiences since being diagnosed in 1998.
I truly believe God had me suffer for awhile with Meniere’s so that I can help other cope.
Image is via https://www.nature.com/articles/nrdp201628
So I been doing the exercises the doctor told me to do and every time it makes me really tired instead of dizzy. Not that I’m complaining but I wonder if I am doing them right. See the crystals are somewhere in the inner ear canals. The idea of the exercises is to move your head around so that the crystal go back into the Utricle area. Now we all have crystals but sometimes they get loose and move into the canal causing certain types of dizziness. For the most part I feel better. Did feel a little congested last night so I did a sinus rinse to flush the area out. Most people use a Netpot but you can you a ball syringe with a homemade solution of warm water & salt. The Netpot comes with these packets that you add to the water but for me it really burned. So people with sinus issues really need to stay on top of it so you don’t get an infection that would then cause Meniere’s problems. I have also been trying to boost my immune system by taking a good multivitamin plus herbs that are natural antifungals. Garlic, Sovereign Silver, & Goldseal. I also take Quercetin with Bromelain and vitamin C for inflammation. Now you should always start with a low dose. Just because the bottle says take 3 a day, start with 1 to see how you react. If you are ok then add one. I have been going to www.vitaminshoppe.com to get most of the vitamins. They have good prices & local stores. Now if you go to the doctor you should always tell them what vitamins & herbs along with prescriptions you are taking. Some natural items might cause a reaction to medication or make them work less effective. The only way the doctor can help is if you give him the whole picture.
Well that’s all for now. Remember do not hesitate to ask questions or leave comments. I’m always open to helping others.