Tag Archives: neurally mediated hypotension

Celiac, CFS, Hypotension – To Keep Up, Jump…

friends

No, not literally.  It may wear you out and frankly, you won’t get anywhere.

Okay friends, strangers I hope will become friends, and anybody else who’s interested.  I’m trying to transition our Living Chronically blog over to it’s new and more “Lori friendly” home.  After you’ve made that all important leap of faith, I’d love for you to join in.  Please click on “The Committed” button to join in and I’ll be able to jump back and visit you some time as well!  If, for some unknown reason, you aren’t comfy doing that, you can click on “The Alternative” button.  I and my other blogger friends won’t have the pleasure of seeing your pretty profile on my blog.  But, hey, whatever floats your boat.  The important thing here is to jump.

Ready?  Here’s where you make the  JUMP See you there!

P.S. Please be kind.  It’s a work in progress and beauty sometimes takes it’s own sweet time.

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The Slacker

Who me???

Who me???

Who me?  My daughter?  My son?  Hubby? (Not hubby)  I guess it is to be somewhat allowed during the summer so I’ll take responsibility.  Here’s a brief update.

After the trip last week, Jes was quite exhausted for about 2-3 days.  (Heck, we all were)  When she couldn’t take my yapping and complaining about her unbelievably disgusting bedroom, she perked up and did a two day major clean resulting in two full garbage bags full of junk.  How do teenagers do that?  Anyway, she’s better now and has even spent time at the neighborhood pool “networking” for baby-sitting jobs.

We went to the neurologist last week.  I SO  immensely enjoyed telling the doctor that, against his suggestion to take Jessie to a hospital to see a psychiatrist (because he couldn’t find the cause of the migraines) and through stubbornness and research we found that the migraines actually came from Neurally Mediated Hypotension – not depression.  HA!  I love it when things like that happen.  The physician’s assistant was thrilled that we found the culprit.  The doctor didn’t have much to say.  Maybe because he was WRONG.  Uh-oh.  Is my attitude showing?  Need to check that.  Seriously, I’m not debating that depression can result from having a chonic illness.  Everyone knows that it does.  However, if I’ve learned one thing in the past several years, it’s to trust your instinct and be an advocate!  That gut feeling is always worth investigating.

So, summer has begun.  Things are still a little busy, but a good busy.  We’re taking road trips to visit friends – always fun.

Have a great week.

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Friday Update and The Grieving Process

It’s been a long week.  Jessie hasn’t been able to attend school any more this week since the one class on Monday.  Sleep has been practically nonexistent.  We added back all of the medication last week and the Charlotte doctor said that we should try increasing the Lyrica if Jessie continues to have trouble sleeping.  So I’m going to give her 50mg tonight instead of her usual 25 mg.  For some reason, I don’t think that will make much difference.

We got the news this week that the school is not going to recommend honors or AP classes next year (11th grade) for Jessie. The reasoning for this, according to administration, is that she can’t get the full impact of the course (lectures, discussions, etc) while working from home.  I was surprised when we got the news and Jessie argued at first, then realized that there is nothing she can do about it.  This may be hard to understand, but hearing those words was like a slap in the face.  First I felt a sense of relief, then confusion, a bit of anger and then more confusion.

Jessie is one of the rare cases of CFIDS that doesn’t have the brain fog or cognitive issues.  In fact, throughout the past three plus years of dealing with this debilitating illness, she has remained on the honor roll, making only a few B’s.  She’s been blessed with a gift of knowledge that absolutely didn’t come from her mother!  Anyway, the news leaves me torn.  I know that Jessie will have less stress next year in regular classes, which is a good thing.  I’ve never been academically tough on my daughter.  In fact, her dad and I have both encouraged her to take fewer advanced classes lately to relieve stress.  However, I know my daughter.  Jessie’s bar for herself has been set incredibly high regarding her classes and her grades.  She always insists on taking rigorous classes and strives to make only A’s. 

Since Jessie’s had this illness, she’s been robbed of her teen years.  She can no longer participate in sports.  When she’s sick and even many times when she’s not, she isn’t up to participating in extra-curricular activities because energy has to be carefully measured.  Also, when she’s sick, she doesn’t feel up to seeing friends.  This past year we had to move to another state and Jessie was taken away from her support system, her friends.  Because she was only in school for two months, she didn’t have the chance to create the friendship she desperately needs.  This move was very difficult for her.  

So, basically the only thing that Jessie absolutely KNOWS that she has is her exceptional ability to learn.  Now because of this stupid disease, she will have to attend classes that she will literally float through.  Jessie wants to work in medicine, possibly becoming a doctor.  She jokes that she’s had so much experience recently with doctors that she may as well become one.  

Don’t get me wrong, I am at the opposite end of the spectrum when it comes to pushy “helicopter” parents.  I’ve been more in favor of quiet time than over-booked days.  Before this illness, activities and sports were limited.  Now however, I don’t know what’s right for her.  Under normal circumstances, this girl is fully capable of taking dual-credit high school courses in the 11th grade.  She has aced honor courses for the past 3 years while attending less than half of the actual classes.  Is it right to make her take a lower level class, beneath her true ability?  Will this yank out the one thing she has now that gives her pride?  

On the other hand, we know that we’re not talking about normal circumstances.  Will taking the regular classes give our daughter time to breathe and maybe a little more energy to attend a few football games and dances?  Is this part of the grieving process I’ve read about for parents of chronically ill children?  Is this a parent’s guilt after uprooting a teen and making her move to another state, away from her friends?  Most importantly, where is a good psychiatrist when you need one?

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I’m Not Being Punished At All!

Wes sat with Jessie late into the night on Thursday, trying to make her feel better.  I think they made some progress.  He told me on Friday morning before he left that she laughed when he began to throw chocolate chips at her head.  Hmm…never will I figure out their strange sibling bond/love/hate relationship.  At any rate, he made sure that he left long before she got up on Friday and although she wasn’t happy that we refused to let her go, she understood.  

Jessie didn’t sleep well at all last night and is tired and achy.  She was taking the new medicine twice daily but I was advised that it may cause sleep problems, so she’s going to take it all in the morning from here on out.  It’s either from timing, strictly coincidence, or because she stopped taking one of the other meds.  Maybe she’ll sleep better tonight.  I noticed also today that her feet were swollen.  This could also be a side effect of the Florinef.  Luckily it didn’t last too long.  I took her to the library this afternoon and she’s got a new book to read.  As I write, she is on the front porch reading with the dog by her side. 

Bad news with the doctor and the homebound issue.  I swear, it’s always something, isn’t it?  The doctor has had the letter and labs from the North Carolina doctor for about 1.5 weeks now and I keep calling, the school has called.  Anyway, the nurse called me yesterday at about 4:45 to say that the doctor was still not convinced and she wants to see us in her office.  AGHH.  This relationship is NOT working out.  The last time we saw this doctor in November when Jessie was battling the migraines, she told me that I coddled Jessie too much and that I needed to force her to go to school.  The cardiologist we’ve been working with told us that he knows of a really good PCP and that he would write a letter to her so that they could work together.  I’ll be calling her office on Monday to schedule an appointment.  That won’t help us in this situation though since we haven’t even seen anybody else yet.  Do we ever miss our doctor in Virginia.    

I had joked that by the time we get the stupid letter signed for homebound, Jessie would probably be feeling better.  That may just be the case!  Wouldn’t it be a good thing?  I told Jessie that we should first see how she does through this weekend and if she feels okay on Monday, then she should just make another go of attending school at least on a part time basis and forget working with this doctor.  After all, she has 2.5 months left for the year.  Maybe we can somehow eek it out.  If she goes and has a real problem such as dizziness, relapse, etc., I’ll see if I can work with the cardiologist until we establish a relationship with the new PCP.

Boy, I didn’t mean to go on about that, but it is a pretty major sticking point for us at the moment.

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What IS Normal Anyway?

 

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Since Jessie has recently been diagnosed with Neurally Mediated Hypotension (meaning that your brain is giving your heart the wrong signal) with the end result being Orthostatic Intolerence (meaning you get dizzy a lot), dizziness has been one of the “questions of the day” in our household.  

A funny thing happened the other day.  Jessie comes into the kitchen.  I ask, “How are you feeling?  Any dizziness?.” Her reply is, “You know, I just thought everybody saw black flashes and spotty lights from time to time.  I thought it was a normal thing.”  
I ask, “Do you mean EVERYBODY or people with Chronic Fatigue?”
Jessie says, “Everybody!”

We had our laugh when I told her that, no, it is NOT normal to see stars and black flashes on a daily basis.  Heck, it’s not even normal to have it occur on an occasional basis!  Apparently the girl has been living with this condition for, well I don’t even know how long!  She just grew up thinking that it was a normal thing for everyone.  I know, this doesn’t make our family look very bright.

That got me to thinking about  what NORMAL really is.  Of course, “normal” is a relative term.  I think I remember hearing that people who have been born blind are more often than not completely content with their condition because it is “normal” – something they’ve always lived with.  If a child is abused and never knows the difference, they think that this abusive behavior is “normal”.   The list goes on and on.  

It just amazed me that a 16 year old would think that seeing stars is NORMAL!  How can this be?  What else does this child think is NORMAL?  Think about it, this could only be the tip of the iceberg.
You know, it’s crazy thoughts like these that keep parents awake at night. 

Have you ever found that what you thought was normal really wasn’t so normal after all?  Just a thought.

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Trying Something (Else) New

Today, the cardiologist decided to increase Jessie’s Florinef from  once to twice a day.  This is what I was hoping for.  He also seemed to really take an interest in cracking the puzzle of her illness.  This is something I’m ALWAYS hoping for.  

The doctor said that instead of just throwing more medicine at Jessie, why don’t we increase the Florinef while at the same time cut out the other medication she has been taking.  Hmm…I kind of like this idea.  I already felt strongly that her medication needed major tweaking and, let’s face it, she’s already unable to attend school.  We all agreed to do this experiment.  So here we go, trying something entirely new.  

They did another EKG and everything looked good.  Jessie got a little freaked when she asked the assistant if she would have to wear the heart monitor overnight again.  The assistants reply was, no, but there was a possibility that the doctor may want her to wear a 30-day heart monitor.  OH MY GOSH.  It was one of those “speak and jump WAY back” moments that this poor little assistant didn’t know anything about.  I thought Jessie was going to take her out right then and there.  Luckily, she wasn’t required to wear the 30-day thingy, the assistant survived the strange encounter and all was well.  

At any rate, whether good or bad, we should have an interesting week ahead looking for symptoms, side effects, spontaneous growing of additional limbs, mustaches, etc.  We’ll keep you posted.

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Add MORE Salt?

For the majority of us, watching our salt intake is something we know that we should do.  In recent years, I’ve added that to my list of things to check out at the grocery store when shopping for the family.  In fact, one day recently, Jessie and I were on the frozen food isle when she pulled out a Hungry Man Fried Chicken and Mashed Potatoes dinner. (This was one of her favorites when she was really little, dad was out of town, and mom let them pick out a frozen meal for dinner.  Am I the only one guilty of that?)  The girl nearly tackled and whipped me for abusing my children with a frozen dinner which has around 2869 mg of sodium!  Double ouch.

Fast forward to the present and, of all things, Jessie is told to consume more salt.  Aside from the thought of eating a Hungry Man dinner every night (which is truly gross, by the way),  I really had no idea how tough this feat is to accomplish while keeping the remainder of the family on your typical “low-salt” diet.  Right now I’m buying tons of Power Ade and setting the salt shaker at Jessie’s end of the table.  I considered salt tablets which, by the way, are so unpopular that you have to purchase them online, but the cardiologist said no.  As I said in an earlier post, Jeff, my brilliant husband, and Wes suggested heading out to the nearest farm store for a large block of salt to put out back, or maybe beside Jessie’s bed, so that she can lean over and give it a lick every once in awhile.  Needless to say, this didn’t go over very well.

Getting back to the diet, Jessie hates dill pickles and can’t eat most of the other things on the list because they contain gluten.  So our search continues.  I will step off of my soapbox now as it’s time to salt the potatoes, broccoli, and chicken for dinner.

Any suggestions?

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