The Game Plan

In my last post I mentioned that I was seeing a functional medicine doctor to see if she can help with my vestibular disorder and ocular flutter.  I did receive some preliminary test results that I will share for those who are following the story and curious about their own struggles with the same issue.

 

My blood panel revealed low levels of Vitamin D and some minerals and a homozygous gene mutation (MTHFR C677T - see here for more information).  The stool sample revealed a condition called dysbiosis, a microbial imbalance in my digestive tract.  I have lots of bad bacteria thriving and none of the good.  My urine test revealed high levels of mercury.

 

 

The game plan is for me to take the following supplements:

• Vitamin D3
• Complete Mineral Complex
• Methyl Protect (for the gene mutation)
• Pre & probitoics

I also need to take an antibiotic that will kill the bad bacteria in my stomach before starting the pre and probiotics. I was told this antibiotic does not get absorbed into the blood stream but directly deals with the digestive tract so it won't cause any further issues.  This is just part 1 of the game plan since the biggest issue I need to tackle is the mercury toxicity.  My body is not in the healthiest position right now to be able to detox properly, so the above supplements are meant to get me there. 

 

I will update again after my follow up visit and let you know how my treatment is going, if it helps me feel better, and what will be done about the mercury toxicity.

 

The One Year Mark

Today marks my one year anniversary of getting sick with my mysterious vestibular disorder and ocular flutter.  It was 1/31/14 that I experienced the abrupt onset of symptoms and have lived with them every day since then.  I call last year my worst year physically, but my best year spiritually.  Funny how that can be so true!  I really want to hate 2014, but I can't.  It was the year the Lord brought so much spiritual healing and growth into my life, that I can't help but look back and be more grateful than I've ever been.  I know Him more, I have a deeper understanding of His word, I call upon His truth in the face of fear whereas before, I'd let anxiety overwhelm me, I feel His presence and grace in my life on a daily basis and continuously walk by His power in my weakness (2 Cor 12:9). 

Since my last blog post I've just been living life to the best of my ability (and quite well for the most part, thank you Lord!), with episodes here and there that have kept me in bed for the day.  Thankfully, those are fewer and further between.  I've been exercising most days of the week, which is a huge blessing and something I've missed, getting all my chores and shopping done and caring for my grandmother who is still living with us.  Every day is a daily surrender to the Lord's strength and every day He gets me through.

I did start seeing a functional medicine doctor who is looking into things like heavy metal toxicity, nutritional deficiencies, mold exposure, gut bacteria and more, so I will update if any answers come from this new round of testing.  In the meantime, I just take each day as it comes, as I wait for my healing that the Lord promised.  I don't know if it will be through this new doctor I am seeing, or by His own miraculous power, but either way I know it will be in His perfect time.
 

Vestibular update and my latest diagnosis

I haven't written a post in a while, mostly because I haven't felt led by the Lord to share anything. Some things have changed the past month and I wanted to at least share my latest diagnosis for those who may be following my vestibular disorder journey.

 

My vestibular rehabilitation ended on September 11th after 6 months of therapy. My therapist appealed to my insurance company to pay for more visits. They kept giving us the run around for almost a month.  One representative would tell us I'm not allowed anymore visits and another representative would say the visits were unlimited.  I had to make a choice.  I had reached a point of complete and total weariness in even wanting to do the exercises anymore.  I had stopped doing them for the month that my insurance company was making their decision and since I hadn't gotten any worse and the therapy wasn't helping me get any better, my husband and I decided that I would not return.  In the meantime, my grandmother told us that she was ready to move in with us (we had been praying for months for her to make this decision). I don't believe it was a coincidence that my therapy ended after six months and grandmother suddenly decided to move in!  She could have decided to move in sooner, while I was still in therapy, but she didn't. My treadmill was in the space where she would now be living so we had to sell it. I couldn't use it anymore for therapy so it was clear with this new direction that the Lord was leading us in, that deciding not to go back was the right decision.  The door is always open if I need it!  However, she would become my therapy by keeping me all kinds of busy! ;)

I was a bit concerned because of my illness, hoping it would not interfere with caring for her. I knew the Lord was at work and that He would equip me with everything I needed to make sure my grandma was taken care of, despite my own condition.  About two weeks before she moved in I reached that place of desperation where I cried out to the Lord with the admission that I simply could not go on like this anymore in my own strength. If He wanted me to continue this way, then He would have to provide everything I needed to go on. Of course, being our great and awesome God, He did just that and more.  I know that He does His greatest work in our place of surrender and although I've needed Him to get me through each and every day since this all started in January, this sense of need was different.  It was rock bottom, mostly emotionally, and when you're at the bottom there is no where to go but up!  More on that to follow...

 

As for my new diagnosis, I had made an appointment to see a neuro-ophthalmologist and waited 6 weeks to see him.  I just had that visit about 2 weeks ago.  Ever since this illness started, I have suffered with this strange illusion of the objects in my environment moving slightly back and forth just about 24/7.  When I'm moving or watching movement, I don't notice it, it's only when I'm completely still.  I knew this wasn't typical of labyrinthitis or MAV and I was curious to see if it was something wrong with my brain or eyes.  The doctor confirmed that I have a rare condition called "ocular flutter".  He could see with one of his tools that my eyes make fast back and forth jerking movements when trying to focus on objects.  It's not detectable with the naked eye, but it's happening and is the reason why I've had this illusion of movement. He said it's normally caused by neurological disease but since my MRI was normal, he ruled that out. He basically called me a case study! He said he would present my case to other specialists he confers with to see if they have any theories as to why this is happening.  Since there is no "cure", this is just another road that leads back to the Lord healing me by His own divine hand.

As I mentioned earlier, when I reached my place of surrender with the Lord, He gave me all I needed to go on in His power. I can't fully explain how that moment changed everything, but ever since that day it has been like living a fully healed life although I am not yet healed. I know that sounds strange and may not even make sense, but it's the only way I know how to explain it. I didn't think I'd ever not despair being in this condition and yet He's given me joy, perseverance, hope, encouragement, peace, strength and more. I didn't know how I'd care for my grandma and yet her being here has been therapeutic for me. She keeps me going and not focused on the illness.  The less I focus on it, the less I even notice it. Don't get me wrong, it's still difficult and I have my moments of fear, but I truly know now what it's like to live in the Lord's power and not my own strength. 

 

I believe I will be healed; He promised I would be.  Now I know for sure He won't be using doctors or medicine.  How awesome to anticipate the God of the universe healing a physical ailment with His own divine power.  What a great day that will be when He gets all the glory.

 

Heal your Headache - Migraine Diet Update

I wanted to share an update to my post entitled "Migraine Associated Vertigo" to give you an update on my experience with the migraine diet from the book, Heal your Headache by Dr. Buchholz.  (He seems to believe that even dizziness/vertigo and the host of other symptoms I experience are migraine related and that by following the diet laid out in his book, they symptoms should decrease or cease all together.  I wish!)

I followed this diet for 6 weeks (I remember reading in the book somewhere, but now I can't find it, to give it 6-8 weeks and then up to 4 months symptom free before introducing "trigger" foods back into the diet). Some may argue I should have tried it longer, but I will tell you why I did not. I was doing pretty well before starting the diet. My symptoms were troublesome and chronic (as in, 24/7), but the vestibular therapy gave me a lot of relief. After starting the diet, I actually got worse. As someone who got actual headaches only once and a while (a few a month, if that), I started getting them at least 3x per week. They were massive headaches too. Also, out of nowhere, I experienced the worst dizziness I had ever experienced since this whole illness began in January (up until starting the diet, my dizziness had been predictable, but this was a major turn for the worse.  I blogged about that experience here). This happened 3 times and actually set me back in vestibular therapy. I had to go back to my most basic exercises, whereas before the diet I had gotten pretty advanced. My life was pretty manageable, feeling about 80-90% better most days before the diet, but after the diet and this major episode of horrendous vertigo, I was back to being practically bed ridden. I couldn't drive for weeks, whereas before I could drive just fine (as previously noted, my dizziness almost always fells better while I in motion and never bothered me while driving up to this point). I actually thought that perhaps the diet WAS working and this was my brain's way of healing and adjusting, so I decided to continue on. However, my health overall just felt like it was starting to decline.

Since there seems to be some sort of trigger food in everything, I started relying too heavily on carbs & sugar. I know this is my own fault, but with a diet so limited, day old bread was pretty easy to reach for when I didn't know what else to eat. I couldn't even follow the sample diet in the book. Dr. Buchholz suggests roast beef sandwiches (what kind of roast beef, surely not processed deli meat??), tuna salad (what about the mayo that has vinegar and lemon juice in it?), grilled cheese sandwiches (I can't find preservative free cheese around here). As for his sample breakfasts, though it sounds good, it's just not healthy to live on waffles with maple syrup, blueberry muffins and bagels with cream cheese every day (not that I could find a preservative free cream cheese anyway). Dinner was the easiest because of Heidi Gunderson's Migraine-Free Cooking cookbook, but I found breakfast and lunch to be limited. I can't remember the last time I ate a decent salad. Although Dr. Buchholz says white wine vinegar is "allowable" in small amounts, I can't use it because of the sulfites. The problem is that now I can't use avocados, lemon juice or yogurt either to make my own salad dressing with those. Eating out was not even an option. Don't get me wrong, if this diet helped me, I would gladly never eat out another day in my life, but it did not.

I think the stress of following the diet and worrying about what food might have a trigger in it caused me to feel much worse too. I'm not saying others with a vestibular disorder shouldn't try, I'm just sharing you my experience. I would personally try anything (that's natural like a diet) and now I can say I did. Do I think it would have "worked" if I tried the diet longer? No, not at all. I have actually been feeling much better now that I stopped following it.  I don't mean that my dizziness is much better, but I feel better overall with more strength, energy and peace of mind and that, in itself, makes the symptoms more bearable and less debilitating. 

 

I do know that before this diet, I had my eyes on the Lord more often, looking to Him to get me through each day in trust that He would.  After starting the diet, I began looking to myself and this diet for help.  It became an obsession of sorts, especially when trying to avoid all "trigger foods". I am genuinely happy for those this diet worked for and if it has helped you and your vestibular disorder, praise God!!  I wish it had worked for me too, but the Lord has other plans for me.

 

Keep looking up! (medical UPdate on my vestibular disorder)

I saw my ENT doctor yesterday for a follow-up visit. I told her all about my recent developments with my illness, how I seem to have had some sort of set back.  I told her all about my theory on me possibly having migraine associated vertigo (which she shot down), and how I started the MAV diet (she had no comment as to whether or not I should continue).  She basically told me that what I'm experiencing is a "normal" part of this illness. I know it's true to have ups and downs, but to have my symptoms dramatically change after being the same for 6 months puzzled me. It's still hard to accept that it's normal, but what else can I do when no one knows for sure? She doesn't think I have migraine associated vertigo because I don't have the "classic" symptoms, which to her knowledge include the headache with the dizziness/vertigo.  However, this goes against everything I've read about the illness. From what I understand, a lot of sufferers have the vestibular symptoms of the migraine with no pain (I do have a history of true headache type migraines).  After a lengthy talk, she concluded with: "I'll be honest with you, I could be wrong". Not very reassuring!

 

She went on to tell me not to fear the positional vertigo, that is fatigues quickly if I just let it pass instead of changing position to make it stop. Thankfully, this type of dizziness does not happen to me often, but it was a nice reminder.  Although then she added: "If it doesn't stop, feel free to curse me out".  Again, not very reassuring! 

 

While on the topic of vertigo, I told her that I had not laid on my right side for years for fear of triggering an attack, as any previous bouts of positional vertigo I had would be triggered by laying on my right side.  She told me not to avoid this position, but rather get back into it so my brain can get used it.  She then told me about one of her patients who told her she would get dizzy when looking up so she hadn't looked up for 10 years!  I had to chuckle because I could certainly relate to the avoidance behavior.  She said she told this woman, don't do that, keep looking up!  (In other words, don't avoid the position that makes you uncomfortable.)

 

As I lay in bed this morning, in between that place of still being asleep and just waking up, the words "keep looking up" came back to me and I immediately thought about looking up towards God.  I was reminded of this scripture: "Therefore, if you have been raised up with Christ, keep seeking the things above, where Christ is, seated at the right hand of God.  Set your mind on things above, not on the things that are on the earth" (Colossians 3:1-2)

 

I know He wants me to look to Him, not to my illness but it's all I can focus on since my latest attack and I know it's not where my mind should be. I look up, I look down, I look back up, I look back down and sometimes I'm looking down for too long.  A lot of times I'm still looking down even when I'm looking up.  I'm seeking the Lord and professing my trust, as I'm seeking ways to lessen my symptoms or get healed through diets, supplements, doctors, holistic practitioners.  Why can't I truly rest in His promise to heal me and just wait!?

I left the doctor's office without any more knowledge regarding my illness than I had before. As a matter of fact, I may be more confused. She continues to believe I have uncompensated labyrinthitis and that it will get better one day.

 

Dear Lord, I know You know that this illness is not easy for me, but I also know You want me to trust You completely.  I have dealt with fear, anxiety and control my whole life and it's clear you are working through these things in my life with this illness.  I thank You that in your sovereignty You know exactly what is going on and have it all under control.  Thank you for the spiritual work you are doing in my life and that I can rest knowing You have my best interests in mind through it all.  Please help me to stop seeking other forms of reassurance and to only look up and to keep looking up!  In Jesus' name I pray, Amen!

 

 

Thankfulness

"Always be joyful, never stop praying, be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus" (1 Thessalonians 5:16-18)

 



I've been doing a study on the book of Colossians and Paul talks a lot about being thankful. A cross reference study question led me to the Thessalonians scripture above one day and it really made me stop and think.  It's God's will for me to be thankful in all circumstances (as well as joyful!).  I haven't exactly been obedient in this area. While I don't think He expects me to sit around and thank Him for allowing me to be dizzy all day and night, I do think He wants me to have an attitude of thankfulness because of all that I DO have to be thankful for thanks to my new life in Him. (On some level, I am thankful for this illness because it's what God used to bring me closer to Him than I have ever been before.)

 

First and foremost, I am thankful for my salvation and my reconciliation to God, my Father, through the blood of my Lord and Savior, Jesus Christ, without whom I could not have possibly made it through a single day of this illness.  I am also forever thankful to God for my husband, who the Lord has given to me as my love, encourager, strength and so much more.

 

Today, practically speaking despite my illness, I am thankful for:

• Being able to get out of bed.

• The time I was able to spend in Bible study and prayer without any major episodes of dizziness trying to stop me!

• The fact that I was able to feed and care for my pets :)

• A successful vestibular rehabilitation appointment, despite the fact that it was very difficult mentally and emotionally to realize how far I have backslidden in my therapy due to this recent bout of vertigo.  I made it through each and every exercise with the Lord's strength when every part of me wanted to give up and felt fearful that it might trigger dizziness.

• Being able to do two loads of laundry and run the dishwasher.

• My recliner, air conditioning and nice, long nap in the afternoon!

• The fact that I was able to prepare dinner and enjoy it at my dining room table with my husband

• A nice, warm shower that I was able to take. Speaking of the shower, I'm also thankful for not getting hurt more seriously when I fell (ironically, not because of my dizziness)

All in all I'd say it was a good day despite feeling worse lately. I need to focus on the good.  I want this to be a habit, a life change, but it's so hard.  It's something only the Lord can do in me as I make the daily choice to focus on all I have to be thankful for.

 

Do you struggle with being joyful and thankful, especially in the really hard times?

 

 

A bump along the dizzy road (Part 2)

I wanted to keep a written record of the recent events regarding my dizziness (see: "A bump along the dizzy road" (Part 1)) because every month, around my menstrual cycle, I feel horrible and think I'm never going to get better.  There were some things I left out my "bump in the road (Part 1)" post that I wanted to share, mostly for my own benefit, but perhaps others could give me some insight or commiseration too.
 

 

A few days before I had my recent attack of vertigo, I felt like I was coming down with a cold.  I was sneezing like crazy, felt run down and had a sore throat.  Ironically, my dizziness was feeling really well considering my menstrual cycle was due and the possible impending cold (colds and sickness can set a vestibular illness back).  Ever since I started the Heal your Headache diet for suspected Migraine Associated Vertigo, I've noticed small improvements in my condition, so I was very encouraged by that.  On Monday, I made a batch of elderberry syrup with honey to combat my oncoming cold.  I also started taking a spoonful of honey and cinnamon for my sore throat.  On Tuesday night, I had a massive headache and finally gave in to taking two Ibuprofen.  I also had a gigantic bowl of vanilla ice cream (Turkey Hill natural - no preservatives) with home made whipped cream (from the Migraine-Free Cookbook) and some caramel topping (also all natural).  I know that bowls of ice cream tend to make me wake up with a sugar hang over, but of course I had to have a bowl.

I woke up Wednesday morning feeling really off.  My head felt strange; however, my sore throat was gone and I didn't feel like I was coming down with a cold anymore.  After I bent down to feed my cat and stood back up, a few seconds later is when the vertigo started.  That story can be found in the post linked above. My menstrual cycle started later that day.
 

Every month during my cycle, my dizziness increases.  It also increases during pressure changes.  Sadly enough, the day I got my cycle, we were due for rain and I clearly was also combatting some type of illness.  Could all three of these things have been what sent my condition over the edge?  All I know is that every month, I feel worse and think I will never get better.  This month though, I feel worse then ever!  It's like I took one giant step backwards. Every day I have felt like a walking zombie, with tons of pressure in my head, terrible eye aches and the feeling like I might tip over or have vertigo again.  Thankfully I haven't had the vertigo again but I feel really, really lousy, like the worst ever since this whole thing started in January.  I've gone back to my basic vestibular exercises and even those are causing my dizziness to increase badly.  For that reason, I've been spending a lot of time lying down.  I know that's bad for this condition, but it's too frightening and uncomfortable to get up and move around too much.
 

I don't know what to do.  Since doctors have no clue how to help, that leaves out their advice. Since everyone's symptoms on any forum or support group I visit and read about vary as much as each snowflake, I simply cannot wrap my mind around this illness and that really upsets me.  It bugs me that no one can tell me what is happening and why and that there is no cure.  Perhaps this is in fact the perfect illness for me to have so the Lord can continue to work in my life.  After all, without any sort of control over the situation or method of healing, I have no where else to turn but to Him.  I truly know what it means now to trust in Him with all my heart and lean not on my own understanding (Proverbs 3:5).  As if I could have any understanding with this illness!?  Now if only I can get the head knowledge into my heart and quit trying so hard to make this go away!!!
 

As I sat in prayer this morning, crying once again to the Lord, the Holy Spirit spoke this word to me: "I can do all things through Christ who strengthens me" (Phil 4:13). I was so thankful the Lord gave me that truth and it filled me with peace. Several hours later, I went back through my journal that I've been keeping (I call it my book of encouragement) filled with scriptures and teachings on healing and waiting on the Lord, and I came across a list I made of truths versus lies a few months ago. One of the lies I was believing at the time was about me getting worse.  I wrote down the lie: what if I get worse?  The truth I used to combat that lie was written in the adjacent column and it said: "I can do all things through Christ who strengthens me".   Thank you, Lord.  I've never needed your strength so bad in my life!

A bump along the dizzy road (Part 1)