The latest on Vestibular Migraine - oh, Wait - is That IT?

My dearest daughter L continues to have health issues. To refresh your memory, read here.   This all started last Fall, you know.  Well, it continues.

A few months ago, L started feeling better finally - almost back to her normal self, but not quite.  She was  trying to do more things, like read, do more chores, sew, thinking about taking classes again, etc.  She has been SO VERY SICK of being SICK, that she tried to overcome it the best that she could.  After a week or so of that, she spiraled down again into barely being able to get off of the couch.  Sigh.  Here we go again, we all thought.

She has spent months doing all the things her Neurologist prescribed for her, including living on a very strict diet to heal her Migraines.  She has gone off of it a few times, but not too horribly.  Medications haven't helped very much.  She is so ultra-sensitive to any medications, that she is given very small doses of anything she is taking.  Yet still, she had a nose dive.

She had an appointment with her Neurologist just in time.  He is very determined and cares for her a great deal, but she causes his puzzler to puzzle.  During this visit, he determined that she has low blood pressure and that this is adding to her dizziness, nausea, etc.  Now, let's see.... how many times in how many doctors' offices have they taken her blood pressure during the months and months of appointments?  Hmmm?  A MILLION???  Yes.  No one thought about her low blood pressure possibly adding to her issues.  Seriously.    She's had lower blood pressure for years.

That appointment with Dr. F. was on a Friday.  Naturally, Hubby started doing research about this.  We discovered that medications she had been on over the years have added greatly to her low blood pressure.  We remembered many times she she has been faint and nearly passed out in certain circumstances.
Many of her  current symptoms matched those of low blood pressure.  What?  Yes.

Then, a few days later, she had an appointment with her other neurologist - well, he is a neuropsychologist.  He was going to chew her out for seemingly not being as cooperative with her neurofeedback (did I tell you about that yet?  THAT is amazing stuff).  Well, he then realized why she wasn't so "in" to it.  She has LOW BLOOD PRESSURE!!  Yes, his tech was taking L's blood pressure twice a week.  Duh.  Come on, people!  We discussed with him everything that has been going on with her, and everything we researched.

What we said mattered.  We are now on a new path to see what is causing the low blood pressure.  For now, she has to take salt tablets, drink lots of water, and exercise.  Apparently old-lady support hose are supposed to help as well.  Good times!

This is a reminder to every parent that ever reads this that even when you have world-famous doctors who appear on Dr. Oz that parents are the ones who OFTEN lead the doctor to the right place.  DO NOT underestimate the power you have and that the knowledge and instincts you have aid in finding a correct diagnosis.  Do not give up.

So, my 20 year old still has no life.  We don't know when she will be well enough to get more than the 3 college credits she has.  She is home....with me (except for when I work, or shop, or go to lunch).... all the time.  She has handled the emotion of all this frustration amazingly well.  I am so proud of her for that.  I have a new appreciation for those with chronic illnesses.  I hope I will have the foresight to support those who can't do anything but survive due to health problems, and support those who take care of them a little bit better.  It's a lonely spot sometimes.

I have days when I wonder if this well end, of this will be her life.  Right now, I really don't know.

I'll just have to WAIT a little while.....and so will she.

More Than You Or I Want to Know about Vestibular Migraines

My sweet daughter L has been suffering since the beginning of October from dizziness, light headedness, nausea, and blurred vision, which I have blogged about a little before.  Yesterday we met with her neurologist (as seen on TV! - yes, he is famous) and  we feel like we finally have a plan of action.  He still believes her symptoms are consistent with the diagnosis of Vestibular Migraines.

For those of you who are interested, the plan involves several different parts.

1.  She will take teeny doses of Topamax, for the migraines, which will take a few weeks to see if it works.  She can increase the dosage as needed.  She will also take Clonazepam in teeny doses for the dizziness.  We really hope that actually helps, because nothing else has so far.
2.  L can sleep okay, but she does not have restful sleep - she has pretty active dreams (battles with swords are often fought and won)  most nights so she doesn't get a lot of rest, really.  He told her to take Benadryl at night to help with that.  Apparently migraine sufferers have worse symptoms from lack of sleep, but you probably already knew that.
3.  Apparently there are several types of foods that can trigger migraines.  She has had very few foods over these past months that she can even stomach to eat, due to constant nausea.  We will have to eliminate things here and there, but several of us, including the doctor, suspect that foods with gluten in them are a trigger.  So, guess who gets to learn about cooking gluten-free?  Yes, that would be us.  Ugh.  We will experiment with other foods that are triggers as well.
4.  L's fitness level was also tested several weeks ago.  Due to the dizziness for 5 months, etc., her fitness level is very low for a young woman her age.  He really read her the riot act about that - I am happy I didn't have to, because I have suspected for a while that this was causing  some of her problems. He explained to her how she needs to get blood moving in her brain to help its functionality. She seems much more motivated now to try.  Of course being dizzy and light-headed every day makes it pretty tough to want to exercise!  So, hopefully some of these medications, etc. will help quickly so that she can start a work-out routine.
5.  He told us to read the book, "Heal Your Headache", which I purchased on Amazon last night.   It is quite a strict program to help with headaches.  After all she has been through, I think L is pretty willing to do what is needed.  At least, she is willing right NOW.....
6. Last month, L participated in some neurocognitive testing, which this doctor ordered, but we haven't gotten the results yet from the doctor who performed them.  We will meet with her, and then find out if L is eligible also for some neurofeedback treatment.  Apparently, this can also be quite a help to some people on the autism spectrum.  That would be a wonderful thing if it would help eliminate or improve some of her Aspergers challenges. I don't really know that much about this, so we shall see.
7.  This doctor is a memory expert, and he was very curious about L's brain and her memory.  She has an amazing memory for certain things, but her executive functioning has always been wavering due to ADD symptoms as well as the Aspergers.  In December, he had her answer a series of questions, and do some tasks in a computer program he designed for memory testing.  He told her that she was "off the charts" with her results, and that he could see from the test results how highly intelligent she is.  He was very pleased, and his reaction to this gave her a much needed boost of confidence.

So, there you have it.  My prayer is that this plan of action actually works for her.  I know many migraine sufferers who do many of these things, but have little improvement when their migraines hit.  While L doesn't have a lot of headache pain, these vertigo symptoms have been completely debilitating and she has not been able to really get going with college credits, or jobs, etc.  She had to miss this semester again.  Hopefully she can start feeling well enough soon to get back to learning to drive, and perhaps get a job.  We have high hopes that her quality of life will improve very soon.

We just may have to WAIT a little while to find out.  

Tait Times of 2011 - Part Two (yes, this one includes a link to all the wedding stuff!)

MORE fun just for you... hahaaaa.....but, in reality, it's probably only for me.

July:  Our dear friends, the Davies, moved to Texas several years ago.  They are a family who likes to do birthdays up BIG.  For her 50th birthday, he wanted to fly us out for her big party as a surprise.  He invited several of her "old best friends" from over the years.  It was so very wonderful!  We had a great time.  I even went on a helicopter ride!  Shocking, truly.

The next few months of details have blurred lines.  From July through September I was overwhelmed with wedding plans.  "But you were just the mother of the groom - what was the big deal?" you say?  Silly you.  It was decided that the wedding would be in the Salt Lake LDS temple.  We were hoping family would travel to it from all over the U.S.  We were blessed that they did.  So, I needed to plan what we called a "Groom's Dinner" for the families of the bride and groom.  We also decided to have an Open House here in Maryland, which would be pretty much like a reception.  I was also helping with many of the reception plans.  So, I think I didn't breathe again until September 18, the day after the Open House.

Engagement photos were taken by Britt's mom.  Here is her blog - she really does a great job!

The kids both flew back here after school was out (BYU Idaho has a summer semester ending mid-July, in case you didn't know).   We looked forward to some time with Britt before they got hitched -we needed to test her to be sure she'd fit in, right?  Well, she did of course.

She EVEN attended a Karaoke competition that Rich did with his work - singing ELVIS!  Now, that's love!

We were sad to see her go....

August - We celebrated Brian's birthday.  Fun!  Continued wedding frenzy consumed me.  I messed up the name of their blog for RSVPing on the little paper that went out with the wedding invitations.  D'oh!  Holy moly.  I think I had a birthday in there somewhere as well.  My friend Amanda was queen of the Open House here, and we met and talked on the phone probably a million times.

September - OH, September!  I will spare you all the minute details. I flew to Utah several days before the big event to prepare and to help out in any way possible.  There was much to do!

The wedding stuff is in a separate post here.

During all of the wedding festivities, I was also involved in planning another Stake Relief Society event.  Thankfully other members of the presidency and committee members took that one over since I was in wedding mode for so many weeks!

Leslie also started her first full semester.  She started out great until.....

October - the beginning of October changed our lives once again.  We thought it would be just for  a few weeks, but has turned into an on-going challenge.   Les began feeling dizzy and nauseated in class.  We gave it a few days, then started going to doctors.  Then we went to more doctors.  And more doctors.  Stay tuned for November and December....

Halloween, oh Halloween.  This is Les's favorite time of the year (next to Christmas, of course).  She planned for months to turn our front yard into one of the video games from  the Legend of Zelda series.  She worked for weeks to paint and create her scene.  She sewed her own costume, which she has worn to many anime conventions.

 Very cool, I must say.

I quilted in October - yet again.  Pictures on that to come.


November - more doctors.  Leslie had to withdraw from all of her classes. She could do only a little bit more than "veg" on the couch, rest, listen to audio books, etc.  She was dizzy and light-headed nearly all the time.  Her appetite was horrible due to the nausea. It has been a very frustrating process.

 A very boring and uneventful Thanksgiving came and went.

December - well, in addition to CHRISTMAS, we finally got a diagnosis for Leslie.  We went to a doctor affiliated with Johns Hopkins and he says she has Vestibular Migraine.  He is unsure of the cause, but he and we are pretty sure it is from a medication change that happened the beginning of October when this all began.  It's like something in her brain snapped and won't snap back.  There is no quick solution, although he assures us she will see an end in sight.  At this point, we don't know if she will be able to go to school in January.  More tests will be run soon.  Say a a prayer or two for this dear young woman, if you would.  

We decided to fly to Arizona for Christmas this year.  We haven't been there to celebrate this holiday in many, many years.  Since B and B were there working and taking a semester off, it seemed like a great plan.  We had a lot of fun - except for Christmas Day when all 5 of us were sick in the hotel room with the stomach flu.  UGHHHH.....

Suns!  Not a great game, but we were THERE!

My brother with two of his grandbabies

Our dear friend, Sis. Gina Stephens, serves in Mesa.  We sneaked in a little visit!  

I also was able to attend a get-together with some high school friends.  I didn't get photos of all of us together, but here are a few:

These women blessed my life in high school and college, as well as today.

What an amazing year!  Lots of travel, lots of planning, lots of visiting with family and friends from past years, and lots of blessings.  I know Heavenly Father's hand has been with us every step.

It seems we have an every-other-year-that's-good.  2011 was fabulous.  I am nervous about 2012.  Still I have great hopes to learn new skills, to organize, to be healthier and  to be closer to God.

I don't know what to do with this blog.  I feel like my thoughts and words are pretty boring to most.  Maybe I'll find a new twist.

Guess you'll just have to WAIT a little while and see.....