Migraine Associated Vertigo (MAV)

It's been a while since I last posted and I wanted to share where I'm at right now with my illness.

I posted several times before about my vestibular disorder that I've been living with since January. My doctor has no idea what's causing it and lumped me into the "it must be uncompensated Labyrinthitis" group. She knows for sure it's not Meniere's Disease, but other than that, it's a mystery. I've been successfully doing vestibular rehabilitation therapy since March. It has helped reduce my symptoms dramatically, although I still have major set backs any time the pressure changes or I get my monthly cycle. 

I shared my story on a few different dizzy forms the past several months and got responses from some very nice women who suggested I might have Migraine Associated Vertigo. I had read about it in the past during my research, but never explored it in depth.  One of the women recommended a book called "Heal your Headache: The 1-2-3 Program for taking control of your pain" by David Buchholz, MD.  I ordered the book from my library and went to pick it up before my vestibular therapy appointment yesterday morning. While at my appointment, I talked more about my symptoms with my therapist.  I didn't mention anything about the book. She said I reminded her a lot of another one of her patients who has Migraine Associated Vertigo. Apparently she had seen some top doctors at John Hopkins University who diagnosed it. She gave me a hand out to read and suggested I get a copy of Heal your Headache.  I couldn't believe it; I told her I just got the book from my library!  I often look for confirmations from the Lord that He's telling me something because I don't want to seek any kind of treatment outside of His will, believing wholeheartedly that He will make good on His promise to heal me because His word is true, always. I took this recommendation by my therapist as a confirmation since I had been praying for Him to use her and guide her in a mighty way regarding my treatment.  I had also been praying for His wisdom, knowledge and guidance.  

I read through the entire book yesterday. I just could not put it down. All my symptoms were described in the book as migraine related: head pain & pressure, sinus pressure, ear pain and fullness, dizziness! I always knew migraines could cause visual symptoms, not just intense headaches, but I had no idea they could cause vestibular (and a whole host of other!) problems too.  I used to get horrible migraines when I was younger, the kind that cause horrendous head pain, light sensitivity, nausea and vomiting. I only had a handful and then they went away, though I struggled since then on and off with dizziness.  Could it be that what I'm experiencing is migraine related?

I'm going to follow the diet recommended in the book, eliminating all common migraine "triggers" to see if it helps with my symptoms.  If it does, praise God!  If it doesn't, praise God! I thank Him for this opportunity to give something a try, but if this is not something that will help me, then I trust Him to bring it to pass in His time and in His way.  

I highly recommend this book though.  It's an excellent read and a real eye opener. Any doctor that challenges the status quo is okay in my book.   

If you've read the book or tried the diet, I'd love for you to share your experiences! For more information on recipes related to this specific diet, the follow links are highly beneficial:

Migraine-Free Cooking (a blog with recipes based on the book)

Migraine-Free Cooking (recipe book based on Heal your Headache)

I ordered the Migraine-Free Cooking book today and look forward to receiving it!  I spent the day clearing my cupboards of any triggers.  My loss is the food pantry's gain!

UPDATE: I tried the Heal your Headache diet for 6 weeks and then 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.

 

Taking thoughts captive

"We are destroying speculations and every lofty thing raised up against the knowledge of God, and we are taking every thought captive to the obedience of Christ," (2 Cor 10:5)

The Lord spoke a very interesting analogy to my heart one day regarding the therapy I am going through to help my brain compensate for my inner ear weakness, and taking my thoughts captive. 

My therapy, Vestibular rehabilitation therapy (VRT), is "an exercise-based program designed to promote central nervous system compensation for inner ear deficits". My physical therapist developed an individualized treatment plan for me that includes specific head, body, and eye exercises that I perform both in office and at home on a daily basis. These exercises are designed to retrain my brain to recognize and process the signals from my inner ears (the vestibular system) and coordinate them with information from my vision and my muscles/joints. (See: What is Vestibular Rehabilitation Therapy? for more information)  

It is crucial to my healing that I perform these same head positioning exercises over and over again, day after day, so that my brain can learn to ignore the mixed signals from my weak ear and compensate. The therapy process is an ongoing battle of taking 1 step forward and then 3 steps back. Just when I think my brain is getting it and I'm feeling better, boom! I have a set back. When I asked my physical therapist why this happens, she explained that it’s just a process that takes time; it’s something new that my brain needs to learn, but over time it will get easier and the bad days will be far less than the good.  

For years (okay, my whole life!) I allowed any and every thought to pop into my mind. I entertained them and fed them, allowing them to grow and take root deep within the pathways of my brain.  It was my norm.  One of the things the Lord called to mind while walking through my illness was that I must confess my sinful thinking and obey His word by beginning to take my thoughts captive. This idea was not foreign to me, I knew the scripture well.  I'll admit that I tried before, in my own strength (we all know how that ends up), to begin the process of taking my wrongful thoughts captive but it was just too hard and I gave up. It was much easier and less painful to just go back to the way I was and not make myself uncomfortable by taking real steps and doing the hard work to change. But this time, I knew it had to be different if I was going to find the kind of real and lasting spiritual healing I believe the Lord is working out in my life during this illness. The Lord showed me that because of the lies I believed, fear was controlling my life because of this illness. In reality, I had let fear of some sort control me my whole life all because of the way I allowed myself to think.  This change of thinking required major attentiveness for someone who was once so casual about their thoughts! The Lord also showed me that aside from taking my thoughts captive, I needed to replace them with truth. I have begun the process of identifying some lies and sinful thoughts I was believing and replacing them with the truth of God's word, and I continue to do so as the Lord reveals them.  However, it's a daily process battle, sometimes minute by minute, that takes alertness (to each thought), hard work and determination.  

So, how did the Lord show me that the two (my therapy and taking thoughts captive) relate in my life?  Physically, my brain was used to my ears doing their job and relied on the information supplied by them to keep me balanced and dizzy free. I didn't need to challenge my brain to take over for my weak ear because it didn't have to. Spiritually, my brain was used to the norm of entertaining any and every thought that popped into my mind, which left me functioning as a person who claimed to be a Christ follower, yet lived the not so abundant life He came to give, devoid of His power and bound up in the chains of fear and lies. Hard truth!  I didn't need to challenge my brain to take my thoughts captive because I let them roam free! Well, it's a new season of challenge for my brain, both physically and spiritually!

The connection is in the challenge. Just like I need to perform my vestibular therapy exercises day after day in order for my brain to keep receiving the wrong signals from my weak ear so that it will learn to function in a new way through compensation, I also need to take my thoughts captive on a daily basis, sometimes minute by minute, in order for my brain to keep the wrong thoughts out and to learn to function in the new way of believing the truth and not lies! As I mentioned above, my vestibular therapy is a process of 1 step forward and 3 steps back, much like taking my thoughts captive has been. It's easy to recognize some wrong thoughts and immediately take them captive, but some days I find myself long into dwelling on the wrong things and wonder how I let it happen. Just as physically my brain slips into it's old familiar pattern of trying to rely on my ears instead of it's new function in taking over for one of them, spiritually my brain slips back into my old familiar routine of letting my thoughts run wild rather than the more difficult work of taking them captive. 

In addition, what I found most interesting, is the literature that claims anxiety (caused mostly in my own life by irrational fear) interferes with the balance compensation process.  As a matter of fact, my doctor even told me the very same thing!  Perhaps the Lord has revealed to me the spiritual healing necessary to bring about the physical one.  

At the end of the day, it’s a process and both my therapy and taking my thoughts captive require trust. After all, Jesus is the one who allows my brain to compensate to bring about my physical healing, just as He gives me the power to take my thoughts captive and has given me His truth to dwell on for my spiritual healing. In both ways, I have to play my active role in the process as I trust in Him. 

Labyrinthitis and Vestibular Rehabilitation Therapy

So, I finally got my diagnosis as to why I've been so dizzy on a daily basis for almost 2 months now.  My ENT sent me for a test called an ENG which revealed a 28% unilateral vestibular weakness in my right ear. He's not exactly sure what caused it but thinks it was most likely a virus that attacked my inner ear. He encouraged me to continue with vestibular rehabilitation therapy (VRT) and I'm in my third week of that therapy now.  

Update: I got a second opinion a while back and was diagnosed with uncompensated labyrinthitis (a form of unilateral vestibular weakness).  Truth be told though, she didn't really know for sure what I have. Apparently, I don't meet all the criteria for any vestibular disorder, so this was her best guess as its the category I most closely fall into to.  It's been over 2 months since this post and I continue to struggle with the dizziness, although it's getting better with my vestibular therapy!  I have days where I feel 80-90% better and days where I'm back in bed.  I'm plugging along though, patiently waiting for my healing from the Lord!  "For the vision [of my healing] is yet for an appointed time, but at the end it shall speak, and not lie: though it tarry, [I will] wait for it; because it will surely come, it will not tarry." (Habakkuk 2:3)

Update #2: I now believe I may suffer from Migraine Associated Vertigo. I don't know for sure, but it certainly sounds possible and given the fact that my doctor isn't sure what's causing my problem, I'm going to try the MAV diet as recommended in "Heal your Headache" by David Buchholz, MD.  For the fully story, I posted about this here. 

For those not familiar with vestibular rehabilitation (I certainly wasn't before having such issues!), it's like physical therapy for the balance system. It's a series of exercises that actually provoke my dizziness so the brain can compensate for the inner ear damage. I do a lot of exercises with my therapist that include balancing on one leg with my eyes closed (on both solid ground as well as balance foam), standing heel to toe with arms crossed and eyes closed, turning my head quickly from side to side and up and down while focusing on a letter on the wall, etc. It may not sound challenging but it is HARD! Because of my inner ear imbalance, my system relies heavily on my eye sight right now so any time I have to close my eyes I'm pretty much a fall waiting to happen. 

My homework includes walking up and down my hallway looking up/down, right/left, diagonal up/diagonal down, and even adding half turns into my walks.  Those are the worst!  I've avoided turning around as much as possible so having to force myself to do it has been difficult.  Now that I'm almost done with my third week of therapy, I do find that it's starting to help.  I no longer react as strongly to the exercises, meaning the dizziness doesn't get provoked as bad. The one move I still struggle with is those turns but I look forward to mastering those too. 

Now that I know the exact illness the Lord is going to heal me of (see His promise to me here), I will continue to walk by faith through my therapy exercises and in life, and wait on His perfect timing!

Has anyone else walked through vestibular therapy or suffered from vestibular dysfunction? I'd love to hear from you so we can encourage one another in the Lord!

For more information on Vestibular Rehabilitation Therapy, see the link below:
http://vestibular.org/understanding-vestibular-disorder/treatment/treatment-detail-page