Saturday, June 23, 2012

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.


  1. I am glad you wrote this update, and I love what you said about parents knowing. Leslie has been through so much in her short life. But she is so lucky to have two AWESOME parents! I hope y'all (practicing my southern) find real answers very soon, and for now I will keep her in my prayers.

  2. I just wrote you the longest comment and it vanished. Bleh. In a nutshell, I'm so sorry about the suffering L is experiencing. I am reminded of our very, very long journey with Britt's health issues and how strenuous and wearing it was for us both. It is so very difficult to get real answers in the medical arena. I am impressed with how you and R advocate for L. Keep up the great work! Also, please tell L that her sister is very mindful of her sufferings and she remembers well that long process of trying to get answers and hoping they will be found. B has much compassion for those who suffer with health issues and I know she is always mindful of L and the challenges she is facing. I am praying! Answers will come. Keep up the amazing faith, all of you. You're in Heavenly Father's hands and things will work out. You are loved!


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