Afraid to tell my story
Hello my name is Dianna. I was born 1996. I’m one of Jehovah’s Witnesses for ten years so far and many to come. I live with my parents and I’m an only not lonely child. I have been part of Vestibular Migraine Disorders on Facebook for a couple of years now, but I have not told my story yet. Why it took me so long to tell my story? Two words of many depression, anxiety, hopelessness, frustrated, not being able to see that treatments are helping me. But with the help of my physiatrist , physiologist and Jehovah , I can’t keep my story to myself because it’s harming me. When I see my physiatrist he asked me if I ever shared my story with others. I told him why would I do that, it pains me to tell me story because I don’t have a happy ending. His response was “You’re story might not have a happy beginning, but I doesn’t define who you are”. This is very painful for me because I can’t find relief just yet for my chronic pain .So whomever takes the time to read this, I thank you from the bottom of my heart. If you wish to make comments or suggestions please let it be encouraging, because we all know that this is hard not just the physical but emotional. Again I thank you if you are going to read this, because heads up its going to be long!!!!!
On April 2010-2011 I had my four wisdom teeth taken out at the same time. The reason is I was going to have braces put on me but there wasn’t enough space in my mouth so the only option was having my wisdom teeth removed. My teeth were not even out yet he had to dig holes and take them out by the root. I try so hard not to remember that day but it keeps coming back to me. I was so scared, my mom came with me , I was about 13-14 years old , I think . I remember I was a freshmen in high school. Well the surgery went smoothly until I remember in one side, I remember the dentist turning my hide to the other side and literally yanking the tooth out of my month. Let me reminded you I wasn’t sedated, I was only put anesthesia on four sides of my mouth. So I saw everything. At the end the doctor told me I did a good job and blah blah. But obviously I was in excruciating. I remember my dad was going to pick us from the dentist, and I remember him coming and looking at me as if I were from another planet. Imagine my face swelled up I had gauze coming out of my mouth and I was crying.
When we came home boy that was relief and I thought everything was going to be smooth sailing. Besides my parents and I living in the house , we rented a small room to a friend of ours. I remember I was lying in the living room and he came out of his room and said to my dad “ What happened to her is she ok ?”. My dad told me that I was ok that I had my wisdom tooth removed. By then everything was a blur to me, I don’t remember what I ate or how I slept.
The next my dad went outside to preach and my mom stayed home with me. So I don’t remember when or how I got up , but the only thing I remember is my mom asking me how to I have to take care of my wounds. I remember her taking me to the bathroom. I looked myself in the mirror and I told her “ I feel very weak” , take to the fact that I lost a lot of blood. So what I did was a leaned back towards the bathroom and all of a sudden – I fainted! My mom had recently had a abdominal hysterectomy done on January , so she couldn’t catch me so she let me go . My next memory was me waking up on the ground , and my mom next to me. She said I was doing something weird in my eyes, like rolling them back. I was unconscious for like 20 minutes. My mom got really scared and she called my dad. My dad came but he walking so nonchalantly like everything was fine. That still bothers me up to this day , because he didn’t see the fall . Not as much that he didn’t see the fall but his attitude. So I remember next was my mom giving orange juice. I kept touching the back side of my head for some reason , I felt pain there. My mom kept asking me if I wanted to go to hospital but I said no. My parents and I regret that decision up to this day. I looked like a blowfish times 10xs.
That night or the next two nights I don’t remember very well I started feeling dizzy at night. When I closed my eyes I felt that the whole room swirled around me. Then another symptom came where the mind-numbing migraines. The dizziness and the migraines would last days and days even weeks and months. I felt out of control because I didn’t know what was happening to me. My parents felt useless because all I used to do and all I still do is cry in pain. But I mean cry and cry of pain, like a little girl. The pain was a throbbing and stabbing pain. At first it was in the back of my head later it extended to other places like around my eye. To the point where I had to go to my room and sit in a couch not have any light or noise, and stay there and cry.
So then the battle began-we went to the ER so frequently and the doctors only explanation was that I was dehydrated and I needed to drink water. I went and saw my pediatrician and I explained to her my symptoms and she send me to the NY Eye and Ear institute. There they told me that maybe it was something with my inner ear , the crystals that we have in our ear where out of place. So there I was diagnosed with Benign Positional Vertigo and for that I went to physical therapy. I went to physical therapy for about a year, but the therapist saw that when I did the exercises my symptoms would get worse!!! So she made me a letter and told me to find a second opinion.
From there my pediatrician referred me to a neurologist in Yonkers. And whenever I saw him I always had a migraine, and every time he did an Epley Maneuver and I would always have a bad reaction to it. Once I threw up all over his suit , and whenever I had a appointment with him he always wanted to try that stupid maneuver and every time I told him no . So his next step was putting me on Amitriptyline. I didn’t see no changes in my migraines , they were always the same , same intensity , no change once ever. The only thing I noticed was it made me gain weight. My pediatrician didn’t believe so my father had to make videos of me every single time I had a migraine. I would get so upset and extremely angry , but my father always had the same response “ This is the only way doctors will see that something is wrong with you “. My pediatrician later on referred me to a neuro-otologist in Brooklyn and he started me on a low salt diet and he put me on Nortriptyline but I didn’t see any changes , it basically didn’t help me.
So from there my pediatrician send me to a neurologist from Valhalla and every month he put me different medication, because I saw that the medication wasn’t helping me at all. I remember that I asked him to send my file ( basically all that he has prescribed me and all his notes ) to my pediatrician . So when I saw my pediatrician she said that she had to my neurologist and they seem to believe that I wasn’t taking me medication. ARE YOU KIDDING ME ? I WOULD BE BEYOND STUPID AND IGNORANT NOT TO TAKE MY MEDICATION! I WANT TO FEEL BETTER THAT IS WHY IM TAKING THE MEDICATION BUT THE MEDS ARE NOT WORKING FOR ME! I GOT SO INCREDIBLY MAD AND UPSET BECAUSE WHY WOULD THESE DOCTORS SAY THAT, IM TRUSTING THEM WITH MY CARE AND THEY ARE SAYING LYIES ABOUT ME. I told my parents , I even showed my parents the empty container bottles of every medication. They consoled me and told me that of course they think what the doctors are saying are preposterous and that they now that I’m very good in taking my meds. By that time the neurologist diagnosed me Vestibular Migraines. Also by this time my migraines were and are still as of today one day yes one day no. What I mean with this is that the my pain always begins at 8:45 and last all night and all through the next day until 10pm that day I can finally get up. I hope all of you understand that my pain is every 24 hours.
I tried all the medications that you can think of – one of many is Botox, which did not work. Until the doctor that was injecting Botox referred me to a Pain Management Doctor. He did nerve blocks of my neck and face and around my eye lids, and that did not work. He also shoved a cotton swab down both of my nostrils. Currently he is still my doctor and he wants me to have a surgery basically to decompress the nerves that are tight which are causing me to have a migraine. But my insurance won’t cover it. But that is still an option. The last time that I saw my PM he wanted to try this patch called Butrans but again stupid insurance won’t cover it. So my PM sent in a appeal and I did also.
My parents have always been there for me, and during these past 7-8 years they have been so patient with me. I can’t thank them enough. It’s weird how much a parent can know there child. A year ago my mother noticed that I was different , not enjoying the things I used to like, being careless about my personal aspect, looking and being sad , getting offended to easily so my mother began nagging me to see a physiologist. But my answer to her was no and that I’m not crazy. So from there we started looking for a physiologist that accepted my insurance , but for me fortune I couldn’t find one. But where I least thought there was a physcologist , there was. And of course 100% of the time our parents are right . A year ago I was diagnosed with depression and anxiety. That hit me hard bc I never thought I was going to be more sick . Besides see a phycologist , I see a physiatrist and I am also doing EMDR therapy. Its hard most of the times but I find myself relieved at the end.
When I have a migraine I only take tramadol 50mg and tynenol . But it only helps 5%. Also when I get a migraine my back pain flares up so badly. With or without the migraine I have pain.
My PM doctor took an MRI of my spine and he saw that my spine doesn’t have a natural C-shape its straight as a pencil, so he thinks that is what is causing me to have spasms that are causing me to have a migraine.
I had to drop out of high school , I needed to finish senior year but I couldn’t manage my pain . I’m going to my therapy every week and I’m still hoping for a treatment that could return me to my life. I’m also starting my official driving classes and the next step from that is getting my GED. It is hard most of the times but I have to press play to my life because these past years my life has been in pause.
I believe in Jehovah God , and I believe and know that prayer is a powerful thing that God has given us to help us during a difficult time.
Here are some Bible scripture that have helped me
1 Peter 5:7 – while you throw all your anxiety on him because he cares for you
Isaiah 33:24 – And no resident will say “ I am sick “ ( This is a future that God promises us )
Isaiah 40:29- He gives power to the tired one And full might to those lacking in strength.
This was an incredible hard thing for me to do and I hope we all can find relief of our pain soon.