Start Of A New Week.

Well, I felt a little off when I woke up this morning. Took my meclizine & laid in the bed for a little bit before I had to get ready for work. I think what happened is when I was sleeping I ended up laying flat on my back, no pillows at all. So maybe the crystals in my inner were sitting in a funny spot. If you think about the BPPV exercises I’m suppose to do one might do them naturally while they are asleep. Many years ago I remember waking up in a full blown vertigo attack. I had to go to the bathroom & crawled out of bed. I didn’t want to wake my husband up but when I could not make it back I had to yell for help. So when you feel funny in the morning you sometimes think the worst. But I have Jesus now & I instantly pray for peace. He is always there to help me fight & stay positive. I finish out the day being very busy at work but feeling really good. Might try wearing my contacts again to work tomorrow. It’s been about a month. But I’ll bring my glasses just in case.
When times get tough just remember you are never alone. God is there to comfort you if you just ask. He will never say no. It might be hard to understand why this happening to you but in God’s time he will show you just as he did me. I would not be writing this if he did not tell me to do more. So just take a breathe & pray. Then let God hold your hand.

Goodnight everyone!

Why Do We Sleep So Much?

So have you ever wondered why a person with Meniere’s sleeps a lot? Well I have a theory. Earlier today the sky got really dark with some thunder. The pressure starts to change and makes you feel funny, maybe a little dizzy. I think while this is all happening your balance nerve in you inner ear does one thing while your body or brain fights to stay upright. Don’t you think that would tire you out too. Most of the time sleeping it off is better fighting it with medication. Why take it if you don’t have to. Also started the BPPV therapy. That could also contribute to me being tried. Well we’ll see what happens tomorrow 🙂

 

Latest: Things are getting better!

So over a month ago I got a sinus infection which is nothing new for me. Last September after going through some allergy tests I found out I am allergic to 2 types of grass, 2 types of dust, American Cockroaches, and cat hair. Now I found online that there might be a connection between Meniere’s and allergies. When I told my ENT doctor he was surprised he didn’t think of it before. The thing with doctors that I have learned even if you find a great one is that they tend to stay focused on the issue at hand. Well I am the type of person that looks everything up and I always ask questions. I was getting sinus infections way too much. So it was decided that I start allergy shots. Well the first 2 months were not good at all. I found out that I could not do the recommended treatment of increasing the dose every week. It was too much. So when I asked the nurse, she said some people may go a month before they increase the shot dose. So when January rolled around I was feeling great by their increasing the dose once a month. Then March rolled around and living in Florida the pollen level was out of control. Got a sinus infection.

Latest: Things are getting better! Part 2

Jump to the beginning of June. I got another infection but this was worse. I started getting dizzy at work on a Monday and after 2 hours I had to leave. Then I was so dizzy I stayed home all week. On Tuesday I called my doctor and he gave me antibiotics. Well normally the dizziness will stop but it didn’t. So I got a stronger antibiotic on Thursday. Still nothing helped. So my husband took me to the ER on June 15, the same day my husband started his vacation. Well the doctor said you have vertigo, well duh plus my potassium was really low. They gave 4 potassium pills and 2 large steroid shots. In a few hours I felt better to go to the in-laws for dinner. I was also prescribed a steroid pack. I had a follow up appointment that Monday and the tube in my ear fell out which is normal. So I was to come back Friday to get it back in before my ENT doctor when on vacation. I was still really dizzy. I went to work one day and it was so bad my mom had to pick me up. So that Friday my husband took me to the doctor where the tube was back and we hoped with that along with the Meniett Device would help. He also said I had to get an MRI to check my brain. I was also given Valium to help calm things down. Well after we got home from the MRI office I felt so bad and it stayed that way all weekend. Mom took me to church where I just started crying. The Pastor and his wife prayed over me for healing then 5 minutes later their 6 yr daughter prayed for me. See I take turns teaching Sunday school and she said I was her favorite teacher. She hated seeing me in pain. So I had to wait a week for my ENT to come back. I spent most of the time working from home because I could not drive. The only thing I could think of was the dizziness was a reaction to the steroid shots. That next Sunday a lady at church who was an ICU RN told me that dizziness is a very common side effect. She called me the next day to say I might have to wait 4wks for all of it to leave my system. Did a lot more crying & praying. When my doctor came back he felt the steroids were causing a reaction and the MRI was all normal. He wanted to see me in one week and if I was not better I was going to be sent to a neurologist. So now I went to the follow up on July 9th he said I looked so much better but since I complained about being a little dizzy when moving my head too fast to the left or right or looking up, he said I probably have calcium crystals in my inner ear. This is not uncommon for Meniere’s patients. It’s called Benign Paroxysmal Positional Vertigo (BPPV) http://www.dizziness-and-balance.com/disorders/bppv/bppv.html a>

So I started doing it last night since it’s the weekend. You never know how dizzy it will make me. So far it’s not too bad but I wonder if I’m doing it right. I just have to keep doing it.

Well sorry for another long post but you are now up to date with everything. Oh FYI, since I have been sick I had to stop the allergy shots. Didn’t want to add to the madness, lol.

Have a good evening everyone!

The Start Of It All

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.