Stroke vs Meds…….A VERY Tricky Balancing Game!

On May 8th, I posted about having finally transitioned over from taking Baclofen to a new med Requip.  I was very excited about the possibility of having found a med that not only quieted the right leg & arm spasticity at night, but also aided in my sleep, without waking the next day feeling like I was a walking zombie! zombie

Well last week I had a major “stroke moment”! I completely forgot to keep track of how many of the new pills I had and ran out!  So for two nights, I had to fall back on my Baclofen.

This little Faux Pas did a few things:  1) I realized how groggy and “out of it” the Baclofen made me feel, 2) Even though it made me sleepy, I was still waking SEVERAL times each of the two nights with painful muscle contractions and spasms.  Sleep, wake, sleep, wake. And 3)  I WILL NEVER FORGET TO CHECK MY SUPPLY OF MEDICATIONS!

I was exhausted by day two when I was able to get a hold of the doctor and get my Rx refilled!

I am finally back on track and today I woke feeling WONDERFUL, rested and ready to go!

raringtogoAlthough I have found that taking 3 tabs of my new med with 1 Baclofen seems to give me more relief than just taking the Requip alone.  I will give this a week, and then try to just take the Requip alone. If I can, it will be great as the price for Baclofen, even with insurance, has skyrocketed here in the West.

I will report back on this.

Feeling Great On New Medicine For My Spasticity!

I’ve been on Baclofen for three years now since my stroke, for my night-time spasticity with very little success.  Yes, it helped…..mildly.  But even at the highest tablet dose, I was still waking up 4-5 times a night with my right leg & arm in spasms!

I didn’t want to add another, stronger medicine, to the others I’m already taking.

So, on my last visit, after telling my doctor again that the Baclofen wasn’t really working, and I was exhausted from not getting enough sleep, we decided to try another medicine:  REQUIP.  This is a med used for muscle spasms, mostly with Parkinson’s patients.

I was ready to try anything.  So for the last 2 weeks, I’ve been lowering my dose of Baclofen, while slowly introducing the Requip.

The last three nights, I’ve  taken 1 Baclofen (vs 4) and 3 Reqiuip.  And I am so excited to report it’s working great!!!!

The last three days, as the Requip was slowly upped and the Baclofen was taken down to 1, I’ve felt more alert, more “my old self”, with more energy and ready to “get moving”.  Best of all?  I am sleeping thru the night with no painful spasms during the night!

The folks I work with have even commented on the difference in my alertness, energy, and mood.

I’m keeping my fingers crossed that my body doesn’t throw a whammy in there and get used to the med and start spasming again, but for now, I’m HAPPY!

As always, it’s up to the patient to SPEAK UP, SPEAK OUT, and MAKE THE DOCTOR listen!  If your meds, your therapy, your treatment, aren’t working, don’t just “go along”, assuming there’s nothing else.

Today, for now, I’m almost pain-free, sleeping great, and raring to go during the day, all because I didn’t give up and I spoke up!

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”?

 

Will the spasticity ever end!?!???

It’s been awhile since my right foot/leg has claimed the attention of more than one family member.

But, tonight it certainly did!  Earlier today, I pulled a muscle in my back. Nothing major, just one of those “twisted wrong” moments.

So I got out a TENS unit I have.  With my husbands help, I got hooked up.

45 mins later, and ready for bed,  my back felt great.

But…. My right leg/foot DID NOT!

My husband went upstairs first and I followed. Soon, VERY soon, it became apparent that although my back felt better, the nervous system on my right side….. Was ticked off!

With the help (and extreme patience) of both my husband and oldest son, we spent 25 mins of extremely painful muscle spasms & muscle tightening of both my right foot & lower leg.

I am writing this in bed, after all has quieted, feeling as though my right leg has been driven over by a truck. 

And that’s taking the max oral dose of Baclofen! 

I really DON’T want to take anything stronger.  What’s the alternative?

What should I do??¿

Spasticity: A Pain in the Ass & Everywhere Else!!

From the National Stroke Association:  Spasticity is a condition in which muscles become tight and stiff, which makes movement, especially of the arms or legs, difficult or uncontrollable. Approximately 40 percent of stroke survivors live with spasticity.

Symptoms

Spasticity can cause long periods of forceful contractions in major muscle groups, causing painful muscle spasms. The spasms produce a pain similar to athletic cramping.

Symptoms include:

  • A tight fist
  • Bent elbow
  • Arm pressed against the chest
  • Stiff knee
  • Pointed foot
  • Stiffness in the arms, fingers or legs
  • Painful muscle spasms
  • A series of involuntary rhythmic contractions and relaxations in a muscle or group of muscles that lead to uncontrollable movement or jerking, called clonus
  • Increased muscle “tone”
  • Abnormal posture
  • Hyperexcitable reflexes

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Since my stroke spasticity affects my right side daily.  I take Baclofen, but it doesn’t take away all the pain, stiffness or spasms.  Most nights, I  wake up a couple times.  But sometimes, (like last night), I will wake up four or five times with pain in my right leg & foot.  I will have on/off cramping in my foot & calf muscles, in addition to the ever-present foot spasm.

Some nights I will wake up, sit up, and grab my foot and use a t-shirt or towel to pull the toes up and toward me for 1-2 minutes.  It feels so good to have the foot in this position.

I’ve tried wearing my AFO to bed to keep it in this position, but it’s so uncomfortable.  I have seen a couple “night” type braces that supposedly keep the foot in this position, but I hate to spend money (insurance won’t cover it), order it, and then find out it’s a waste.

Anyone out there tried a night-time brace to help keep their foot in a flexed position with any success?  What have you done/tried for your night-time spasticity pain?

If Only I Could Fall Asleep This Easily…..

When I went to pick up my last Rx of Baclofen, I noticed the first couple days I wasn’t sleeping well.  I was waking up with leg cramps, and once awake, I couldn’t fall back asleep.  After two days, I played detective and discovered that although my last Rx bottle said Baclofen and so did my new bottle, they were each made by a different manufacturer.  I called the pharmacist at Walgreen’s and asked if the two different meds were the same.  He said, “Even though they both say Baclofen, their formulas could be slightly different giving your body trouble.”  I phoned my Dr. and he said, “Just give it a few more days for your body to get used to it!”  Just love the medical profession!

Found this video and thought:  “Wish I could fall asleep this fast!”

Are They Serious?

I was just online searching different sites about spasticity.

I am amazed at how most articles seem to be written by people who have no clue as to what a stroke survivor goes through in regards to spasticity and pain.

“Take pain meds, muscle relaxant medication, and maybe try different physical therapy techniques and you should be good to go.”

There isn’t really any sense that the medical community has an answer.  When reading all the articles out there, you get the feeling everyone is just guessing, and hoping they “get it right”.

What really upset me though was when I came across one article from a prestigious university that said, ” The way to cure spasticity is to avoid having a stroke in the first place.”  NO KIDDING. ..REALLY?

And they received millions in federal funding for that grand conclusion.

Sooo ready for Fall!!

Don’t know about everyone else, but I am soooo ready for Autumn & cooler weather!  My husband commented the other day that he realized my “window of temperature comfort” has narrowed since my stroke.  He’s right.

Heat seems to make me just ache, & my spasticity seems worse, and being in AZ there really is no way to escape it.fallingleaves

So I am hanging on, dreaming of cooler days & nights.