Tag: Tics

Recovery is a jagged line

Published on by Jesus is for the Wounded1 Comment

Today my words came back to me.  My beloved Steve was comforting with his encouragement that there can be many setbacks even when on the road to recovery.  Ah yes.  The old, “recovery is a jagged line” speech.  I have let those words fly many times when working with my patients as an occupational therapist.  There was the cardiac patient who was frustrated with having to restrict his activity level to basically mope-ing around the house for his first week home from the hospital.  I also recall a lady practically quarantined in a back bedroom of her home with a great view of the surrounding woodlands.  She had a portable refrigerator, phone, laptop, accessible bathroom, hospital bed, wheelchair, walker and many conveniences to help her recover from a knee replacement surgery.  I had to encourage her to push up her jagged line a bit lest she become too comfortable in her hospital room at home!

occupational_therapy_no_limitsOne of the many reasons I enjoyed working in home health care was the ability to use the person’s real-life situations, supplies, and responsibilities as part of his or her occupational therapy.  The role of an O.T. is to evaluate the daily activities of an individual and the skills needed to complete those activities.  When there is a breakdown due to an illness, surgery, mental health problem, developmental delay, disability, or disease process, the O.T. works with the patient and his or her resources to restore function.  I was always amazed at how “resourceful” some patients could be!  I think the farmers were the best.  I’ll never forget the industrious wife of a patient suffering after several failed back surgeries.  The lady of the house had built from scrap wood a rolling cart with a seat on top and rope attached to move it along the floors in her home.  What was she moving?  Well her husband of course!  He was eligible for a wheelchair rental but evidently the subject never came up.  I don’t think they even wanted one when it became available.  The downside:  the gentleman would not likely become independent in household mobility and related activities when sitting on a cart that had to be pulled by others.  Recovery is sometimes a flat line too:  no true recovery at all.

As for me, the recovery is moving forward.  I am 12 days into using high CBD hemp oil to attempt to control daily seizure-like tic episodes.  Today I had a setback for about 2 hours but at least the episode was low grade without a severe neck headache or pain.  And when night time rolled around to my bewitching hours of 9-11:00 p.m. there were pre-tic symptoms and nothing else.  This is the second night in a row with relief!  Every night prior to this and for the past 8 months I have had 2-4 hours of intermittent seizures.  Virtually every day or night for the past 2-1/2 years I have had intermittent waking seizures.   Praise the Lord, the pattern is changing!  At either set intervals or when noxious symptoms start I take a full or partial dose of high CBD hemp oil and get relief.  Nothing has ever done this before!

It’s not like I haven’t prayed, submitted, waited, or tried more diets/supplements/drugs/manual therapies/technologies/chiropractors/testing/remediation than, as they used to say, “Carter has got pills!”  I am actually still preparing to see methylation and biotoxin illness specialists in Michigan later this month.  It is likely that the cause of illness is related more to exposure to biotoxins than Lyme disease.  All that may be clearer sometime down the road.  At this time my husband and I are rejoicing for the relief from our hellish nights.  He just might start getting a full night of sleep before too long!  That is if we don’t stay up for other reasons . . . ;J

If you are curious about high CBD hemp oil then I offer this informational website:  www.mycbdresearch.com  and join the discussion on Facebook at:  www.facebook.com/CBDhempandseizures  There’s hope here for many with seizures and other neurological, intractable health conditions.  For all of us there is one ultimate source of hope that will sustain us whether recovery is a straight, jagged, or invisible line:  a relationship with the Lord, Jesus Christ.  To find Him we only need to get on our knees and open our hearts to His enduring love, His love letters to each of us in the Bible.  I would have never made it this far without my Jesus.  I am humbled and grateful for many aspects of these past 2 1/2 years:  I’m working on accepting the wretched parts.

Meeting you, Gentle Reader, along the way is a sweet gift.  Thank you for being a part of my recovery too.  JJ

Brain Dump and CBD

Published on by Jesus is for the Wounded6 Comments

And so I was right.  That is not necessarily a good thing.

The doctor apologized and gave a couple of reasons why he missed 5 pages of an 8-page lab report completed 6 months ago.  We had reviewed the results 3 months ago or rather, the first 3 pages of the report!  As it turns out, the last time this particular set of labs was completed over a year ago, the last 5 pages were missing then as well.  So what is the significance?  Those last 5 pages contain information about daily cycles of two hormones that could explain my ravenous, violent seizure-like episodes in the early morning and evening.  Treatment related to those findings could have alleviated my tremendous suffering for the past 6 months!  However, the doc had nothing to say about that.  He said he actually needs to do more research on how to lower melatonin levels!  Well thank you but I have heard this before from you . . .

My next concern was the potential role of a new herbal remedy I started on the lab finding of severely elevated melatonin.  Looks like there are two compelling research articles stating that the active ingredient in what I am taking has not been shown to elevate melatonin levels.  Whew!  Looking closely resulted in seeing how the active ingredient may actually modulate the inactive ingredients that have an effect on melatonin.  Since this active ingredient has served to modulate one particular trace substance when the latter is in higher concentrations, well, that gives me hope.  The answer to the question of how to lower melatonin might already be in my cupboard!

Here’s what “it” is:  high CBD hemp oil.  This is not medical marijuana nor an oil made from the psychoactive ingredient:  THC.  That would be illegal in my State and actually not necessary to impact seizure-like activity.  Both CBD and THC-laden products are from a cannibus plant yet the plants grown for high CBD oil and their products are legal in all 50 of the United States.  No special procedures are needed to obtain it:  just sort through a plethora of information online to find a pure product with concentrations high enough (pun intended) to affect health.  (You cannot get high from CDB oil by the way.)  And the benefits are tremendous:  intractable epilepsy, diabetes, multiple sclerosis and many more.  Add THC and the list of therapeutic effects increases to include cancer.  Thankfully for me the active ingredient needed to reduce seizures is CBD with only trace amounts of other “cannabinoids.”

Here’s a great place to find an overview of hemp oil, cannabis, how its administered, and the benefits:  www.mycbdresearch.com

The first week experimenting with CBD oil has yielded 3 days with less than an hour of seizure-like activity.  This is a HUGE improvement over the average of 3 hours per day of seizures for EIGHT STRAIGHT MONTHS and the 1-3 hours per day overall for the past TWO  YEARS!  At least once per month the duration increased to 6-12 hours.  Whew again.  I am encouraged.  I have trusted the Lord throughout my research process and even in deciding which product to try.  Receiving the melatonin lab results today may be a confirmation of this decision.  The timing of this situation coming together is very interesting indeed.

Doc did have one idea:  resume using my bright light therapy for 30-60 seconds, multiple times per day to naturally lower melatonin levels.  Cool beans.  You know the old saying, “do what you can, with what you have, where you are.”  Another one goes, “here we go again!” with what could be yet another false start to healing.  Somehow I have a feeling this one will make a lasting impression.  Stay tuned.  I am going to get well!  :J

Addendum:  just opened a new Facebook page entitled, “Seizure Free Zone.”  Like us and join the discussion today!

Someday

Published on by Jesus is for the Wounded1 Comment

no seizure button

Yes, no, and wait

Published on by Jesus is for the WoundedLeave a comment

They say that the Lord answers prayers with three responses:  yes, no, and wait.  I believe I have experienced all of these in a big way this past week!

Yes.  The answer was “yes” to the question of whether or not I would like to be admitted to the Indiana University (IU) Methodist Hospital Neurology Unit.  After an intense appointment with a neurologist in the IU Neuroscience Center, Dr. R. offered an overnight “observation” stay for a video EEG.  The hope was to capture the tic and seizure attack episodes to clarify my diagnosis and treatment.  So with the clothes on my back (since we were 2 1/2 hours from home), my husband and I followed the epileptologist’s advice and proceeded with the admission procedures.  I’d had 2 hours of sleep the evening before and a major episode in the office of the neurologist that morning.  Surely I was primed for plenty of episodes as the day progressed!

And that is exactly what followed:  at least a dozen more full blown or brief episodes captured on video with dozens of electrodes glued to my head and a heart monitor attached to my chest.  The rest of my Tuesday was wretched.  One good part was finding some food to eat on the hospital menu fit my Candida diet, yes!  The staff was nice.  Many unfortunate frustrations occurred as well; you’ve heard enough of those on this blog so I won’t elaborate.  The biggest frustration was seeing the inpatient neurologist twice for about 60 seconds each time he visited my room.  He never looked at my MRI films or my medical records!  His job was to do the EEG study and nothing else so that’s all he did.  Perhaps that is all I could take anyways?  Who knows.

No.  I do not have epilepsy.  O.k., my Lyme/mold literate doctor kinda knew that already.  The hospital neurologist said I needed to follow up with the Neuroscience Center neurologist for treatment or any next steps in my care.  The answer was also “no” to having one of my 3x/week IV magnesium infusions while the IV was still in my arm.  I usually have a tic or seizure-like episode when it is inserted or removed so I was grieved when they could not help me with this; I would need to make up the appointment at Dupont Hospital in Fort Wayne, back home.   The nurse pulled the IV; another episode followed, off camera.

There were plenty of other “no” replies over the 24 hour stay in the hospital.  Perhaps you know what it is like?  I was ordered to be on bed rest and fall precautions, tethered with multiple probes, monitors, and a bed alarm.  Geez.  At least they let me use the bathroom after initially forcing me to take a bowel movement on a commode in the room within view of the video cameras.  Geez again.  Eventually I was too exhausted  to care if the back of my hospital gown flung open.  Finally, after 2:00 a.m., I got 7 straight hours of sleep.  A miracle for an inpatient setting, no less.  Thank you Lord!

Wait.  These past 2 days since returning home have required patience with myself as I recovered from the whole ordeal.  My dear husband drove a total of 5 hours two days in a row plus participated in the neurology appointment on Tuesday and completed a partial day of work on Wednesday.  Steve is a saint, I tell you!  So we both have waited for our bodies to recover from exhaustion.  I will need to wait to speak to the neurologist at the Neuroscience Center as well.  Her nurse was not able to return my phone call Thursday or Friday.  Steve and I are waiting and wondering what’s my treatment plan?  Do I have one?

My heart is breaking with another project that must wait at the moment:  publishing my eBook:  Hope Beyond Lyme:  The First Year.  I need to transpose the final edits into the document formatted for publication.  I’m about 3 hours from pressing the “go” button!  This must wait until I can concentrate better.  I just feel too traumatized and drained by the hospitalization experience.  Perhaps it’s all I can take now anyways?  Who knows.

I do know one thing:  writing is one of the best therapeutic agents for me to come back to my senses!  I am sooooooo grateful for you, Gentle Reader!  You keep me sane!  I am grateful to report that I had a 27-hour reprieve from noxious events yesterday and two less events overall thereafter.  Being away from home and in the hospital (with a limited pharmacy for supplements and compounded medications) forced me to go off most of my prescribed treatments.  This may have been a blessing in disguise!  I’ve started an elimination schedule, gradually adding back one item at a time and recording my symptoms.  Turns out that one of my supplements is made from mold!  Chucked that one last night after a bad episode.  Not sure what caused the one tonight.  Oh well.  It was around 10:30 p.m.  I always have a severe episode then anyways.  Got any ideas?

Yes.  No.  Wait.  Perhaps this week is no different than any other with these three answers to prayer, to the desires of my heart.  I am so glad that I can trust the Lord with any answer that comes from Him.

1 John 5  14 This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. 15 And if we know that he hears us—whatever we ask—we know that we have what we asked of him.

And when the answer does come, the one we have hoped for with longing and expectation, it can be as joyful as a wedding celebration:

John 3:29 29 The bride belongs to the bridegroom. The friend who attends the bridegroom waits and listens for him, and is full of joy when he hears the bridegroom’s voice. That joy is mine, and it is now complete. 

I am somewhere between the themes of these two verses, knowing that He cares for my needs and has a Divine plan that includes all of the events of this past week.  In the meantime I must keep my eyes focused on Him lest they wander to places that will get in the way of healing.  I will rest in the promise that has meant so much to me these past 10 years.  His love prevails and will carry me through all that is to come.  Perhaps it will encourage you too?

Romans 8  38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Brief treatment update

Published on by Jesus is for the Wounded3 Comments

Here’s a brief update in my continuing adventure of recovery from Lyme, fibro, mold, and whatever:

Saw a new chiropractor for 7 visits and while the treatment got rid of my headaches and increased my overall ability to move, I had seizure attacks every visit!  I finally got word this past week that Dr. N did talk to my LLMD as I had requested.  Still  Dr. N referred me to another chiropractor for more “comprehensive” care.  That did not work out so well.  (See posting from Tuesday!)  I’ll probably go back to Dr. N after a few more magnesium treatments and after I’m able to drive 30 minutes to his office several times per week.

Began treatments of IV magnesium on Friday the 13th; spent the evening with seizure attacks/convulsions followed by 7 hours of tic/seizure attacks into the morning.  Yipes!  Had a better day by the time Sunday came, albeit weak from the previous 2 days.  (Only had one episode that night, on the way home from our Sunday church home group.)  Getting the IVs started has become an arduous, painful process with a minimum of 2 wretched sticks before the RNs find a suitable vein.  What follows on the day of treatment or the day after appears to be a herx reaction or healing crisis of sorts.  This treatment is scheduled to continue for a month; supplemental magnesium is a promising treatment for me despite the difficulties.  I’m praying that the Lord sustains me and that my tender vessels endure it!   Tomorrow I’m going to let them give me the PRN narcotic pain med. with the treatment.  I just need a break from these awful neck headaches that come from the wrenching head-n-neck motion during attacks.  Gratefully, there is improvement with one fewer attack per day, barely a few tics last night and significantly less chest compression pain!  Yes!

Rife or Beam Ray treatments are on hold.  My tolerance for this sound and light wavelength technology was decreasing so it’s on hold for now.

Waiting in the wings is a new round of low dose antibiotics after some lab testing pending soon to rule out a new UTI.  Got lots of itchy, burning, ringing, stinging, stabbing, aching symptoms all over right now possibly flared up by the stress of the IV treatments.  “Rest” is my focus at the moment in my weakened state.  I do make dinner most nights, however!

A neurology appointment is now scheduled for October 1st at the Indiana University Medical Center in Indianapolis.  IU is the go-to place for persons in the Fort Wayne area needing a special consultation.  So to Indy we will go at 5 in the morning.  Hey, if my beloved can take off at 6 in the morning for a kayak race, 5 should be a piece of cake, right?  Gooooo Steeeeeeve!  As for me, well I might still be up from the night before!

Steve and I are grateful for some help with a meal once per week from the lovely ladies at our church.  It seems like the night they bring dinner something bad happens later on, like an emergency room visit 2 1/2 weeks ago.  Their generosity is a real blessing and it sure breaks up the isolation for me when they stop by!

Well that’s the main stuff or at least the news for the masses.  If you wouldn’t mind praying for us that would be great.  My heart is tender for Steve right now because we had to cancel our trip to see his grandson for Jackson Rees’s first birthday and to see some dear friends in South Carolina.  I really need Steve in the evenings when the attacks and physical episodes of collapse are usually quite nasty.  This would be too much for a female friend to handle if a gal was staying with me at night and Steve went out of town by himself.

Steve has travelled alone 3 times since this process of illness began for me nearly 2 years ago.  We have cancelled a trip before but rarely decline local invitations.  Steve just goes to them without me and that is cool with me.  Travelling to Arkansas this past summer was very hard on me despite a couple of nice visits during the 5-day trip.  So to cancel the South Carolina/North Carolina trip is just what we have to do this time, although it’s a bummer.  JR is going to get a big box in the mail real soon!  Anyways, if you wouldn’t mind praying a prayer of sustaining grace (for me) and strength (for Steve) that would be super.  The Lord has helped us and even blessed us.  We are trusting Him and hopeful for all He has in store for us.  (Proverbs 3:5-6)

Take care all,

Just JulieProverbs 3.5-6