My Dizzy Story

*** In 2016, I was officially diagnosed with Lyme disease, which has been the cause of all my medical issues since late 2013, early 2014 ***

I decided to share my dizzy story so you will get the full picture.  If you've read any of my posts in date order, you already have bits and pieces of the story.  If a Google search of dizziness led you here, my hope is that this might encourage you to know you are not alone. As I type this, it is almost 6 months since my symptoms began. 

My journey through what my doctor believed to be Labyrinthitis (more on that later), began on January 31, 2014.  I know the date because I sent out a prayer request minutes after it started to some friends via the internet so the date is set in stone.  (Prior to this episode, I had experienced periodic episodes of Benign Paroxysmal Positional Vertigo (BPPV), which were diagnosed by my doctor and my current vestibular therapist.)   It was a typical morning for me. After seeing my husband off to work, I sat down to work on a Bible study I had been going through. I ran downstairs to throw some laundry in the machine and on my way back up the stairs, one of my kitties playfully weaved in and out of my legs so I stopped and sat on the stairs to pet him.  When I looked up while petting him, the sense of movement began. It wasn't the spinning sensation I had gotten previously with the BPPV, but a weird sense that the environment around me was swaying slightly, even though I was sitting still.  I ran up the stairs and prayed it was just "a thing" and noticed that while I was moving, the sensation went away. However, when I sat still on my couch, it came back.  I looked at the chair across from our sofa and it looked like it was moving ever so slightly up/down and back/forth. I knew right away that what I was experiencing was different than BPPV, but I chalked it up to being related.  I'd like to say I didn't freak out but I did. After sending out the prayer request, I called a friend of mine to pray for me. I also talked to my husband at work and we agreed I would sit back to try and relax and see what happened.  It took a few more minutes for the sensation to stop and I mustered up the courage to sit up again and work on my Bible study as planned.  I thought it might be the enemy trying to keep me from my studies and I wasn't about to let that happened!  I seemed okay over the next few days, but then it came back a week or so later and this time, for good. 

I remember waking up in the middle of the night feeling as if I were moving. My eyes were closed and when I opened them, the shifting and swaying of the room and objects were back. Every time I closed my eyes, the moving sensation felt worse. It was then I realized I felt worse in the dark so I turned on some lights and that seemed to help a bit. I really didn't know what to think. I saw my primary doctor who diagnosed me with a sinus infection, gave me antibiotics and suggested I take anti-vert. I passed on the anti-vert but took the antibiotics because I thought they would help but they did not.  I spent most of the month of February and beginning of March in my bedroom, as that was the only room in my house that seemed to cause the least amount of dizziness. I had finally developed a routine of getting into prayer and Bible study every morning since January and I was determined to keep it that way. I began to work through one study after another, as the Lord led me, right there in bed surrounded by all my pets. They were good company and seemed to love the fact that all I could do was lay around and rest!  I mention this part of the story because over the course of the next several months, to this day, the Lord has transformed my spiritual life and walk with Him like none other. Although I wouldn't wish this illness on anyone, I wouldn't trade it for the world because of how He used it in my life to bring me closer to Him.  I posted about this experience here

On February 17, while in prayer, the Lord gave me a promise that He would heal me. I hold on to that promise and look forward to His timing. I also blogged about that experience here. At the time, I had no idea what He planned to heal me from since I hadn't gotten a diagnosis yet. Not long after that I saw an ENT who ran a bunch of tests which revealed a 28% weakness of the right ear.  Basically, my right ear is functioning 28% less than my left sending mixed signals to my brain as to where I'm at in relation to space and whether or not I'm moving.  He admitted he had no idea why it happened and suggested Vestibular Rehabilitation Therapy (VRT).  

I started Vestibular Rehabilitation Therapy on March 17 and did that for 6 months.  It helped dramatically reduce my symptoms, for the most part.  However, anytime the pressure changes, I get my menstrual cycle, if I get anxious or if I eat poorly and don't get enough rest, the symptoms increase. The shifting and swaying of objects around me haven't ceased completely, but the intensity varies. Again, as long as I'm moving and keeping active, or in a moving vehicle, it doesn't bother me. 

When it came time for my follow up visit to my ENT in April, I switched to another doctor in the practice who "specializes" in balance disorders.  She listened to my history and looked over all my test results and diagnosed me with Labyrinthitis (this diagnosis never sat well with me because I just didn't have the classic symptoms and a neuro-opthamologist would later reveal I was correct and never had labyrinthitis). She ruled out Meneire's Diease, but other than knowing for sure I don't have that, she wasn't entirely sure what was wrong. She gave me a nasal spray to use and advised me to continue with VRT, as well as have a brain MRI to rule out any acoustic neuromas. I used the nasal spray for a while, which seemed to help the ear pressure at the time, but ended up giving me a bloody nose so I stopped using it.  I should note here that the extent to which I used any medications was the nasal spray she gave me, Claritin and Advil Sinus. I've since given up the Advil as well and just stick with Claritin now and then. My brain MRI came back normal.

With every passing month I grew more spiritually, and my symptoms slowly began to improve with therapy.  I can't remember exactly when it happened, but over time I was able to get out of bed and spend more time around the rest of my house without being greatly affected by symptoms. I started going out more, getting back into my usual routine and taking up formal exercise again (in a modified sense).  I workout at home to Faithful Workouts and just do what I can. I'm not back to normal by any means, but most days I'm close, around 80-90%.  The only problems lies in the cruel nature of this illness in that while I can go for weeks feeling 80-90% better, I can wake up one morning feeling horrible all over gain.  That feeling can last weeks as well and I wonder if this will ever end.  I know that is the enemy of my soul trying to discourage me and I do my best to take my thoughts captive and replace them with the truth of God's word! Just to keep it real though, I still have many bad days where I am discouraged and the only thing that gets me through is the Lord.  He reminds me to trust Him and to just keep walking by faith. 

I shared my story on a few dizzy forums recently and a few women were kind enough to email me and suggest that I might have Migraine Associated Vertigo.  I just shared this story in a blog post found here.  You can read the full story in that post, but basically my vestibular therapist also thought I might have MAV and, after reading Heal your Headache by David Buchholz, MD, I decided to give his migraine diet a try.  After being on that diet for 2 weeks and actually feeling pretty well, I woke up one morning to horrible positional vertigo.  It happened twice and only lasted a brief amount of time, but it was enough to throw me for a loop.  Prior to this, my only real feeling of dizziness had been the shifting of objects and the appearance as though the world is swaying (like on a pendulum), along with one brief bout of "rocking".  It took several weeks after the morning of that most recent episode to feel better again.  It was as if all my work in vestibular therapy had been set back to day one. I recently woke up to another strange sensation while standing in my kitchen, the feeling as though I were being pulled to the left and right pretty violently.  Again, it only lasted seconds, but this seems to be a new thing I'm currently dealing with.  I'm continuing with the diet and trusting in the Lord.

UPDATE: After trying the Heal your Headache diet for 6 weeks, I called it quits.  For the entire update and all of the details, please refer to this post: "Heal your Headache - Migraine Diet Update".  In a nutshell, it did not work for me.

UPDATE #2, October 27, 2014: I went to see a neuro-ophthalmologist a few weeks ago and he diagnosed me with an eye disease called "ocular flutter".  You can find the full story here.  This is the reason why objects in my vision continually look as if they are moving back and forth.  This is a separate issue from my vertigo but if you've read my dizzy story, you know that this has been my primary symptom since this all began.  Although I do have a 28% vestibular weakness of the right ear, he is of the opinion that I never had labyrinthitis or migraine associated vertigo.  He basically had no answers for me, and no treatment.

UPDATE #3, January 31, 2015: I just starting seeing a functional medicine doctor who is looking into things like heavy metal toxicity, nutritional deficiencies, mold exposure, gut bacteria and more.  I have completed a few tests and am going for blood work next week, after which I will see her again to discuss the results and see if we can find anything that may help with healing.

UPDATE #4, February 27, 2015: Some preliminary test results from my new doctor's office revealed high levels of mercury, as well as low vitamin D and minerals such as iodine, zinc, copper, etc.; also, a homozygous gene mutation (MTHFR C677T) and dysbiosis of the digestive tract (a microbial imbalance where I have tons of bad bacteria and none of the good). My current treatment plan is to take supplements to increase my vitamins & minerals to acceptable levels and to help with my methylation, as well as pre and probiotics to help the gut issue. Once this is done over a period of time, the next step will be to deal with my mercury toxicity. 

UPDATE #5: On April 1, 2015, I started a 60+ day treatment plan to remove heavy metals from my body.  You can read all about my latest health update, how I'm feeling and all about the plan here.  

UPDATE #6: In January 2016, I was clinically diagnosed with lyme's disease by an LLMD (lyme's literate medical doctor). He believes this has been the cause of all my symptoms. See this blog post for more information.

FINAL UPDATE: As of February, 2016, I have been officially diagnosed with Lyme disease not only according to clinical symptoms, but also according to a CDS/NYS positive Lyme blood test. 

I wanted to devote a paragraph just to my symptoms alone so you can see what I experienced and if you can relate!

My symptoms
In the beginning, the shifting and swaying of objects were so upsetting, I couldn't really do much except lay in bed. I wish I had known sooner that the more you force yourself to move around, the better it is for your brain to try and compensate right away!  Apparently I was doing myself a disservice by laying around, but it was just my natural response.  At first, that was my only sensation of dizziness, but in May I had a brief experience of "rocking" where the world looked as if it were on a see saw going extremely fast, but that passed within seconds. Most recently, I had a bout of positional vertigo (I blogged about that here), which happened twice the same day, and a brief episode of feeling like I was being pulled to the right and left, along with a pretty bad head rush.  In the beginning, I was sensitive to bright lights and noise, but that has since pretty much diminished. I couldn't tolerate much motion on TV, but that has gotten better. I had nystagmus of the eyes, which has gotten better, but I still struggle with them jumping around now and then, especially when trying to focus on a letter while shaking my head in vestibular therapy. I couldn't handle the computer or reading for long periods of time and listening to music on headphones seemed to increase my symptoms as well.  I can handle a bit more of the computer now, but overall I can't stay on it too long.  The music still seems to bother me. I always felt worse in the dark and still do to this day.  At first, when I would lay down and close my eyes at night, the sense of movement got worse.  That has gotten better in that it happens less frequently and the feeling of movement when it does happen is less intense. From the start, I always felt better while I was moving around and riding in the car, it was always when I was still that the symptoms were the most prominent and that is still true to this day. I could always drive myself and tolerate motion as a passenger in the front seat, but stop signs and stop lights would bother me and bring on the symptoms because I was still, though I never once had trouble looking back and forth checking for traffic. Trying to track cars with my eyes going by would cause nausea in the beginning but that has since gotten better. I've pretty much had consistent right ear pain and pressure throughout the ordeal, although it cleared up somewhat after using some Colloidal Silver nasal spray for a few days. I have a lot of sinus pressure, facial pain and right sided head pressure that comes and goes with no explanation. Another thing I experienced the first few months was an odd "pulling" sensation on the right side of my head any time I got visually over stimulated.  Also, if I was in a place or situation I couldn't handle visually, my eyes would feel like they were going to bulge out of my head. I could handle certain places and scenery better then others, which I never fully understood.  Supermarkets were okay for the most part, depending on the lay out or floor patterns, but not great. At first, my eyes would jump all over the place while searching for things on the shelves, but that has since gotten better. The first several months, I was SO tired!!  I couldn't handle doing much for very long without needing a nap and I found that if I pushed myself too hard on a "good day", I would suffer for it the next day with a really bad one. That has gotten much better where I can do a lot more now with less napping and without the consequence of what the next day may bring.  I also couldn't concentrate much but that has gotten better as well.  I can definitely see improvements in many ways, but other symptoms still "come and go" or are still here for now. 

I have to say again that without the Lord, His word and my brothers and sisters in Christ praying for me, I don't know how I could have gotten through this.  I know one day He will heal me and I pray He uses what He has done in my life mightily to reach others for His kingdom and encouragement. 

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. 

(2 Corinthians 1:3-4)

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