Things That Affect My Stroke Symptoms Negatively aka “Hit My Wall”!

Okay, it’s been just over three years now since my stroke.  I know how lucky I am to have survived, and how lucky I am to have progressed so much.  My days are getting easier, my “brain fuzziness” moments are getting farther and fewer between.

But there are things that negatively affect my “always” stroke symptoms!  These things will make me “lose it”, or as my husband says, “Hit your wall!”

My list of things that can make me “Hit my wall”:

  • Large Loud Crowds – Way too much stimulation!
  • Long conversations – Having to listen and try to participate in a long conversation will usually have me “loosing it” because I lose focus.
  • Lack of Sleep – Nuff Said!
  • Alcohol – Wine has become a very weird thing for me.  Sometimes a couple or more glasses, no problem.  But more and more, I will be fine, and WHAM, half a glass later and I’ve “hit my wall” BIG TIME!  I find that my right side, especially my arm and leg will spasm and tighten up for about a good 15-20 minutes and hurt like hell!

So I’m curious to find out what will make you “hit your wall”?


First Time Sick Since Stroke……..

Two days ago, I came down with a horrid cold that my high school freshman brought home.  Being “Mom”, I, of course, wanted to nurse him back to health, which unfortunately, this time, meant I got it 😦

This is the first time I’ve gotten sick since my stroke & I have to say it, “It seems different”.  I find that I am much more tired and “discomboobulated” (a word my mother used to use)!

Before my stroke, with a cold, I would feel run down and tired, runny nose, etc…  But with this cold, I find that the stroke symptoms are exacerbated.  I find that my mind is not as clear, get fuddled much easier, and my right side (the stroke affected side) is just not as “on” as it has been.

I am finding that my body reacts so differently since my stroke to so many situations that it never did before.  What was once “just a cold”, now has me seeming to be more “off” than usual.

Don’t Understand? Ask Until You Do!!!

Anyone dealing with a long-term illness or condition will understand my next statement:  All patients must question their doctor’s about every aspect of their treatment plan!  Ask once, ask twice!  Hell, ask a hundred times until YOU UNDERSTAND the why, when, how, & where.  And most important:  Make sure YOU AGREE.

I have spent the last three nights in hell!  I have been on Baclofen since my stroke in Mar 2012.  But it wasn’t cutting it.  So last Friday the doctor asked me to try a different medication.

The problem?  Nothing was mentioned, and I didn’t ask bignono ,  about tapering me off the Baclofen first, or in conjunction with taking the new medication.  The last three nights, last night being the worst, had me awake all night, tossing & turning, and trying to stay comfortable amid the leg & shoulder spasms.  Which of course, led to me laying there becoming more agitated because I couldn’t sleep! This morning I am shaky, dizzy & and my anxiety level is at the top!

I put in a call to the doctor’s office this morning,  They put me on hold after I explained the situation and then the nurse came back on the line stating the doctor was sorry he didn’t catch that.  I am to gradually cut back on the Baclofen at the same time as taking the new medication.  I made sure to ask twice about this and hung up knowing I understood the why, when, how, and where! And for good measure, I called my husband and explained it to him so we both know!

Finding A Sympathetic Medical Ear!

Friday I had an appointment with a doctor that I truly like.  Anyone who is dealing with a medical problem today will probably understand how rare that statement is from a patient.

I was not thrilled with my neurologist.  Here in Arizona, as it is probably everywhere else, the good doctors are so booked it can take months to get in.  When I first had my stroke, and was sent home from the hospital, I was told to get a neurologist pronto!  Easier said than done.  I phoned 6 neurologists that were highly recommended.  Four were not taking new patients, one was only taking new patients who were recommended by certain physicians, and the last one couldn’t see me for, get this……….7 months!
So you can understand how thrilled I was to get in to see ANY neurologist within a 4 month period of having my stroke.  I went in with a hopeful & thankful attitude that very quickly changed to an attitude of “Well doctor, don’t you think you’re special!”  The bedside manner was horrible.  I was talked to like a child when she decided to speak directly to me.  Most of the time she spoke to my husband.  Irritated that hell out of me!

On the last visit with her, her attitude was basically telling me there was nothing more she could do.  She didn’t say she wanted to see me again, but told me as she was leaving the office, “You need to just set a goal!”  UH OK???!!

So I was happy to find out that a doctor I was already seeing would help me with my meds and any problems I would be having, including recommendations & help seeing other physicians when needed.

Last Friday I went in knowing I would be seeing his P.A. as he had become so busy (the good ones are) that he’d hired help.  I was nervous as I just knew I could not handle a smart ass, or a person talking down to me!

Today is Sunday and I am more relaxed about me stroke care than I have been in a long while!  The P.A. was helpful, listened attentively to both my husband and ME, and answered all my questions, no matter how insignificant.  He sympathized with me over the many symptoms a recovering stroke patient goes thru, and helped with the meds the neurologist was prescribing.

What the people in the medical field MUST UNDERSTAND first and foremost, is that a patient’s #1 need when being treated is to have a sympathetic ear listening to them.  We need to be talked to directly and treated like the adults we are!!

Celebrate World Stroke Day by Knowing the Signs!!!

Today, October 29, 2013, is World Stroke Day!  Please, even if stroke has not effected your life, or the life of someone you know, I ask that you at least be aware of the signs of stroke so you are better able to help yourself or someone else!  Stroke can sneak up at any time, any place, any day!


Tongue Tingling!

I have become aware of something weird lately and I’m not quite sure if it’s always happened and for some reason I am noticing it all of a sudden or what.  But, when I have a day where I feel in a fog, like today, I notice that the right side, back of my tongue tingles, like it’s falling asleep, and I have this metallic taste.  My right side was affected after my stroke.

Anyone else notice this type of symptom??

Always In The Back Of My Mind

Last night was a horrible night for me.  I kept waking up worrying about things.  One of the things I worry about most though is having another stroke & having it be much worse than the one I’ve already had.  I worry about how my life, & my family’s life, will deal with another blow.

Every time I start to get a headache, I wonder if the pain will increase.  Every time the back right side of my tongue starts to feel “weird”, I worry if it’s a smaller symptom waiting to join other symptoms.  And every time the right side of my head starts to get “tingly”, I stop and just wait it out………. wondering & worrying.

I try to not worry about it, but it’s always in the back of my mind.  I try to “live each day”, but, well, you know!

What does it feel like when having a stroke?

I got this question one day from a student therapist and I realized I had never really talked about what it felt like “during the actual stroke!”

Please read my page: How It Felt When Having My Stroke!