Thursday, December 1, 2011

Migraine Update

Today marks officially 1 month of having a migraine - definitely not something to brag about!  However, today was also significant in 2 other ways:  I found out that all but one of the Multiple Sclerosis results from my lumbar puncture last Monday are back and all negative (we are thankful for that; the other test result is more sensitive, but my neurosurgeon feels that in light of the others all being negative, there's really nothing to worry about),and I saw a Jefferson University Hospital neurologist (this is significant for this area because apparently, Jefferson has the best reputation when it comes to neurology).  We are thankful I was able to get in to see her, and we were really impressed with her knowledge and ability to look into all aspects of my case and piece everything together. 

I went into the appointment desperately praying that she would know what was wrong with me and know just how to fix things.  That did not happen because she admitted that she does not know for sure what it is, although she has a couple of ideas.  However, I feel she is my best shot of getting to the bottom of things because she is very aggressive in getting a diagnosis and is not content just trying to treat my pain.

So, the plan (as complicated as it's getting - sorry it's so long!):
1.  I need to get a MRA (Magnetic resonance angiography), which is a brain MRI done differently in order to study the arteriole system - One suspicion is that I have an aneurism. -- I was able to schedule this for Tuesday, Dec. 6 at 6:45a.m. (they want me to be the first person in because of my latex allergy).

2. Next week I will also get more blood work done, this time to have a more extensive work-up to make sure I don't have vasculitis. 

3.  I had stopped taking Depakote as of Sunday to see if the tremors I was having would go away or not since I first noticed the tremors when I was taking 1000mg of it.  The tremors have greatly lessened but are still present, and this neurologist thinks it may be another neurological symptom.  To be sure, I am to stay off of the Depakote and allow it to fully get out of my system.  My levels will be checked in my blood when I get my blood work done next week.  If I am clear, I will start on Lamictal, another strong anti-seizure medicine that has been successful in treating migraines.  To avoid drug interactions, I have to have Depakote completely out of my system.  This will mean, that my pain will progressively get worse as the Depakote leaves.  I have already begun to see this effect over the past few days, although the Elavil I am on is helping to prevent my pain from escalating to what it was before being hospitalized.

4.  I need to see a neuro-opthamologist to get my depth perception checked out, because it appears that my depth perception is not right which culminated in an accident this morning when I was walking down the stairs with Josh's uniform.  I thought I had just stepped off the last step, but actually had 2 more steps to go, so I fell down the stairs and sprained my ankle.

5.  The neurologist found weakness and diminished sensation in my left leg/foot which could be a result of the lesion on the right side of my brain.  My neurologist will do 3 more tests on me at my next visit (Dec. 20) to help her get a better picture of what is going on.  One of those 3 tests will be an EEG to make sure there is no connection with the 2 seizures I had back in 1999 when I was diagnosed with neurocardiogenic syncope and had the seizures after I had passed out both times.

As you can see, this neurologist is extremely thorough!  We are praying that within a few weeks time, we may finally have a diagnosis and a plan of action.  We remain confident that no matter what happens, God is in control and is working in through this whole situation for our good and for His glory!

Please continue to keep all of us in your prayers as my own condition weighs heavily on all of us.  Joshua is continuing to have a lot of anxiety over my situation which causes behavior issues at school and home.  As of today, he is going to have some medication adjustments to help him be able to function better in light of his Asperger's Syndrome.  We are also looking for a good child psychologist who might be able to help Joshua process his feelings better.  David is quiet in his reaction to this whole situation, which is easy for us to overlook, so we are trying to be better attentive to his needs.  Since he's becoming the artist of the family, we are trying to encourage him to express his feelings through art.  His health has been stable now for almost a month since his last infection of tonsillitis and pneumonia at the beginning of November.  His antibody transfusions continue to go well, and this week, he finally got to stop his prophylactic antibiotic with the hope that the transfusions have reached a sufficient level in his blood to help his body fight off infection.

We are so thankful that God's grace is sufficient even in these "thorns" in our family's lives.  His strength is what carries us through each day, and His peace keeps our hearts calm as we rest in His care.
We were so thankful that we were able to continue with our Thanksgiving plans and go to my parents' house.  My brother was kind enough to do our family portrait on my parents' property.



  1. Praying for you daily - as I know so many are.

  2. Continuing to keep you guys in our prayers.

    Susan Johnston

  3. Continuing in constant prayer, without ceasing! Love you so much! Deut. 31:6!


  4. Remembering you and your family in. Prayer.

    The Son family

  5. We are definitely holding you up in much prayer! I am so sorry to hear that you don't have a solid answer yet or how to really treat it. Somehow, God will work through this all. That is our hope and comfort, right?!

    Much love,

    The Peppel Family

  6. I’m thrilled to hear about the negative result. That’s one thing all of you won't have to worry about! I hope things are getting better now, and that your health condition no longer weighs heavily in your life. About your migraines, I hope they’re totally gone, or at the very least no longer as severe and frequent as they once were.

    Agnes Lawson @ MedWell Spine