Chronic Illness

Amber’s Hope – TMJD & Meniere’s Disease

TMJD and Meniere's Disease #Spoonie #ChronicPain #ChronicIllness #Fibro #Fibromyalgia Fierce Fibro Femme

Welcome to my journey.

I wanted to give those interested in my story a chance to get a little deeper as well as bringing awareness to the connection between TMJD and Menieres Disease.

Before I continue, I wanted to give many thanks to the woman I talked a little about in my GoFundMe - Susan Drago McDevitt. You could call Susan a God send. Susan has spent countless hours making sure that individuals like myself all around the world don't feel alone, hopeless, or helpless. She created the group 'Meniere's Vertigo Tinnitus TMJ: Meniere's no more chat and support group' because of her own experience with TMJD and Meniere's and I don't know if she ever knew what an impact she would be making in people's lives, in my life. I won't get too much into Susan's story without her consent but I will say she was suffering just like me.

There's a certain amount of misery one goes through when you not only feel miserable physically and emotionally but, it's about a million times worse when your loved ones don't recognize how bad you actually feel. A lot of times, myself and I'm sure many others in this world want nothing more to be understood and sympathized with however, we also understand that sometimes people can't understand what they dont feel.

Lately I have come across a lot of studies regarding the link between TMJD and Menieres Disease as well as other symptoms like vertigo and tinnitus (thanks to Susan) and it makes me excited to know that this could actually be IT! The thing I have been searching for, for years. The answer I have been crying to God for. Now, I'm not saying that this connection will be the answer to everyone's plead for answers who has symptoms like me...shoot, it may not even be the answer I'm looking for but I am so happy that I have hope.

I have been told a myriad of times that I will have to get used to the symptoms I'm experiencing. Something inside of me wont let me accept that answer. It's been about nine years of a nightmare I can't seem to wake up from and every single day I open my eyes, from the moment I open my eyes, my mind begins to forcefully think "What can I do today to start feeling better?" "What research can I find, what doctor can I reach out to, what group can I join, what forum can I find, what pills can I take?" Until I realize that everday has been like the last. I have spent hours researching. Some nights I stay up until the crack of dawn just reading people's stories and finding ways they can relate to mine so I can finally find an answer.

At the age of 22 (now 26), I found Susan's group. It's amazing how much one person can help so many people without even knowing what she just started. There are 5.2K people in the group. So many people have found their answer with the help of Susan from the TMJD and Menieres Disease relationship.

After about a year into the group I started feeling so strongly that I just HAD to persue the option of this connection, even if it turned out to not be the answer for me. There are so many diseases and disorders that can cause my symptoms and at the very least, I will be crossing one thing off my list of "Could be's". I spent a large amount of time reading the group files, watching video's, and personally reaching out to those who have had a lot of success including Susan. After that, I started reaching out to dentist's who claim to know the connection between TMJD and Menieres. You soon come to find, with the knowledge of other members and research that there are so many who don't know the connection, deny the connection, or just don't know how to treat it.

Susan has a specific area of the files in the group that other members can post who they had success with. She actually has a handwritten list of doctors that have successfully treated members in the group! To me, thats pure dedication.

I have visited two neuromuscular dentists who for different reasons, I never went back to. The main reason is cost. The treatment to move your jaw back into the correct place is unjustly expensive, however you will often catch me saying "Everything happens for a reason" and I truly believe that. One thing that always reminds me exactly how true that is was the passing of my mother. My mom died from "The big C" when I was 12. Of course at that age, and even a few years prior to now, I was so upset and hurt that God had taken her away from me so young. Now, at the age of 26 I realize with all I have going on between my physical and mental health...there's absolutely no way I would have been able to deal with the loss of her being gone so in a way, I thank God it happened when it did although, I would still give anything to have her back. So I am happy that I haven't been able to afford treatment for my jaw because I could have spent all the money I would have ever had on someone who couldn't treat me properly.

Now, I have finally found a dentist (recommended by someone in the group who has had amazing results) who believes she can help me and I trust in her. Not only because of the referral but from her knowledge, training, and attitude/commitment to helping others.

I don't know if I can ever truly explain what I feel I have gone through all these years. From not being able to enjoy my younger years to being so depressed that I had to have myself baker acted due to suicidal thoughts (never had intention of doing so of course) .... it's been one hell of an unpleasant ride. I know that some people may still be skeptical on the connection of TMJD and Menieres Disease or the other symptoms I listed but I do ask that you keep an open mind and possibly even do some research just to educate yourself in case you or a family member go through the same thing. I know that so many people are suffering from different things and haven't come across their cure but I hope that this can nudge you in the right direction to finding it whether or not its TMJD. If you have even the smallest inkling that TMJD can be your cause please, PLEASE get it checked out. It couldn't hurt. You are also more than welcome to join the group I posted about above. It's a very large group yet, we are all so close like one big family.

So, I created my GoFundMe account to try to raise the money to start the process of healing. I will need an orthotic splint as well as continuous 3D xrays and adjustments to make sure my jaw is moving properly. As I said in my GoFundMe bio, I do have a job working from home and we don't get paid a whole lot so saving up this kind of money right now is next to impossible with bills and other requirements such as doctor appointments and food. I am really depending on the kindness of strangers to help me get through this time and possibly get my life back.

I can't wait for the day that I can work outside of my home again, working a job I really enjoy as well as going to school and driving. I want to be able to travel back to Washington state to see my uncle and aunt who are so eager to see me. I just want to get back to living. I am asking that if you are able to donate even just a small amount ... you could truly help change my life. To those who have already donated... you have not only helped me monetarily but you've given me hope. I am so thankful that you took the time to donate and share my post so that others could possibly help as well.

I will go ahead and end this by saying thank you for taking the time out to read my story and any other support you give whether it's praying, sharing, or donating. I hope that with the help of social media, I can bring awareness to the connection between TMJD and Meniere's Disease, tinnitus, vertigo, and so many other unexpected symptoms.

Your time and kindness is forever appreciated!

Sincerely and with love,

Amber

PULLED FROM AMBER'S GO FUND ME

Hello,

thank you in advance for taking the time to read this. I hope to bring you on a journey through my health experiences & hope that you will consider sharing this on all platforms of social media & donating, even just the smallest amount will help. Please realize that even $5.00 can get me closer to getting the treatment I need.

My name is Amber & I have tried the GoFundMe route in 2015 to try to raise money for my health issues but didn't have much success. I didn't have nearly enough people view my GoFundMe so I am hoping to change that this time. I am trying again because I don't want to give up. I do currently work in customer service from home however, my ultimate goal is to be able to get back out into the real world & also persue my chosen career field in Medical Billing & Coding.

It's going to be difficult to type up my story into something that won't bore you & keep you here all day but I will do my best.
When I was 17 I woke up to what I thought was going to be a normal day. My best friend came to my apartment to pick me up so I could accompany her in a personal issue. When we got in her car, about five minutes in, the craziest thing happened to me. I started to feel like everything around me was spinning. About a minute into the spinning, I started to black out & I couldn't see anything. I can't explain to you what this felt like, it was so unreal and terrifying. I started to panic & I asked my best friend to bring me to the hospital however, she stopped her car & gave me a minute to let it pass which it did. To this day, nine years later, I can still feel the fear I felt that day. We sat in the still car & she allowed my symptoms to pass even though she had an appointment. Whatever was happening, I hoped & prayed it wouldn't happen again & when it didn't for a couple days...I thought it was safe & maybe I was just tired.
I had just come back from living in another state a few days before this happened & a few days after that first incident I was on my way to my previous job I had for an "interview". Since I already worked there, I was given the job back pretty quickly. After it was over, I got on the bus to go home & then walked to the bus stop to get on my second bus. Just as I finished crossing the street, I started feeling dizzy. I stood against the bus stop & tried to stay still for a moment to hopefully let it pass but it didn't. I started blacking out again & I couldn't see a thing. I started calling out to the other people at the bus stop & asked them to assist me with sitting down. Luckily, there were other people there! After my vision started to return & I was there for about five minutes, a friend happened to drive by & stop to say hello. I asked him to take me to the hospital across the street & he did. After this episode my life has never been the same. I have always felt "off". My vision has totally changed as if I'm looking through glasses that don't belong to me. I was diagnosed with vertigo at the hospital. They told me that this is something that will pass with time.
Days, weeks, & months went by where I was bed ridden. I couldn't get up without help. The fear of not knowing what was going on has accompanied me with serious anxiety & depression. I started trying to get help. I went to so many doctors I can't count. I have seen ENT's, neurologists, general MD's, & everything in between. I have had rehabilitation therapy to try to correct my balance issues but nothing helped. I have taken numerious medications. I have had tests for everything you can think of. I am in general "good health" to the human eye. I was diagnosed with Menieres Disease & told I was going to have to learn to live with it.

It has now been nine long years of me being bed ridden on & off. Nine years of me not being able to work outside of my home. This is a long time to not live your life, a long time to suffer. I know, it's very hard to understand what someone is feeling when you aren't dealing with it but let me tell you, this has been the hardest thing I have ever dealt with & I lost my mother at the age of 12due to cancer. Symptoms seem to get a little better for a couple of months to where I can get out but then they come back so hard & so brutal that I am right back to where I started. I keep trying to beat this but it won't let me go.

Some of the symptoms I am currently suffering from are spontaneous violent vertigo (dizziness), black outs, "off vision", anxiety disorder, panic attacks, depression, migraines, jaw pain, ear pain, ringing in my ears, lightheadedness & nausea.

Over the years I have joined multiple forums & Facebook groups to try to get opinions from others suffering from the same things as myself. LUCKILY in 2014 I came across a group called
"Meniere's Vertigo Tinnitus TMJ : Meniere's no more chat and support group" & happened to stumble across people who were going through the same thing as me. To my surprise, SO MANY of these people found the connection between TMJD & Menieres Disease all because of one woman, Susan D McDevitt. Susan was just like myself & was given treatment. She has been cured of all her serious symptoms just as so many others in the group have. She created the group for awareness & support so others can have the same result she did & it happened!

(Almost done, promise)

After reading so many stories from different members of the group & reaching out to a bunch of people, I decided to take things into my own hands. I set myself up with an appointment to get evaluated for TMJD. With x-rays and MRI's, I have been diagnosed TWICE by TWO neuromuscular dentists. They focus on the way the jaw is connected to nerves in your eyes, ears, & other important places as well as how its connected to so many of the symptoms I am suffering from! They work on the placement of your jaw to correct it's position & lessen or even CURE the affects it can cause when not aligned. I have seen two of these neuromuscular dentists & have had private conversations/emails with about three others. Every one of them have said they believe this is my issue & will relieve me after all of these years. I have never been given an answer that someone can help me. My only issue is cost. The treatment for the orthotic splint I will need to move my jaw back into place as well as x-rays and visits is super expensive. It's also super important to choose a dentist who has treated people with Menieres Disease because it's a subject that they aren't all trained with. I will attach pictures of my paperwork with quotes from the two dentists I have met with. I know, TMJD doesn't sound serious & I know it's no where near close to what other diseases can do but, this has tortured me so long and so incredibly deep. I can;t possibly type up all the suffering & emotion I experience with this.

After this long story i'm sure you are tired of reading however, PLEASE PLEASE PLEASE realize that I am asking for help because with bills I could never afford to pay the kind of money that is needed for me to get better. I am aware that a lot of people will come across this & disregard it because I am a stranger. There are people who make up stories like mine to get money from people, I am NOT one of those people. I am open and willing to Facetime/Skype if you are skeptical about donating & sharing.

Please, I am sincerely asking, if you can donate even just $5.00 to help me, I promise to pay it forward in life when I see someone who needs it. I have had such a hard time trying to get through this & now I have HOPE. Since 2015 I have been trying to get this taken care of but I havent been able to so I am reaching out to you reading this to help me. I am aware that holidays are coming up & money will be tight, but if you can please please donate. You can & will change my life in ways that you may not even be able to imagine. My goal is to have $3,500 to cover these medical expenses. I already have over 10k in debt from only medical bills.
Please share on social media to your friends & family & ask others to do the same. I truly feel in my heart that this is my time & i'm so ready to get my health back in order.

Thank you for taking the time to read this and please consider a small donation as well as a share to help me get treatment. It's been a long time coming & thank God I have held on to faith or I don't know where I would be. I will be FOREVER grateful for your help.

God bless,
Amber.

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