1000mg Of Hope

Me and 2.8 MILLION PEOPLE this month have been infiltrated by the nasty cold and flu invaders. This cold has wrecked havoc on my immunity for the last few days. The symptoms have been heavy head, congestion, sneezing, mild lingering headache, watery eyes, and fatigue. I am tired and irritable!

In hopes of gaining some symptom relief, I begin popping 12- Hour Sudafed sinus congestion and pressure pills. Within a few hours of taking the pills, my eyes stop watering, and the vice around my head seems to lessen, HOWEVER, the relief is brief and minimal! Regardless of relief, I still feel terribly sick, forcing me to dismiss the moments of interim relief. Yet, every 12 hours I find myself popping these pills!

sudafed

MOST of us have sampled majority of the cold medicines starring back at us on those cluttered store shelves. Temporary and minimal relief are your best hope. The medications won’t cure, they are meant to push us through the worst. We get desperate for any relief. Our medicine cabinets reflect that desperation! We pop a pill because desperate times calls for desperate measures!

THANK GOD, eventually in time, my immune system will dry up this cold, and it will be ridded from my body.

Wouldn’t it be comforting to know that a positive outcome awaits after illness ran it’s course?

Living with a vestibular(balance disorder) condition that is chronic, I have taken my fair share of vestibular suppressant medications. Lying there doped up on meclizine or valium in hopes of temporary relief that never came. The medications I have tried so far have been unsuccessful and have been counterproductive due to unpleasant side effects.

Which brings me to December’s 12-12-12 project member Pam. Pam is living with Generalized Dystonia. Dystonia being a disorder of movement.

According to Pam’s fantastic blog, Dystonia Muse: Chronicles Of A Dystonia Muse

Our muscles themselves are fine. They’re just receiving confusing instructions (“mis-transmissions”), like a mis-coached football team running around in senseless patterns, no offense or defense, as they fail to accomplish coordinated plays let alone score a touchdown!

In a blog post titled, “Introducing My Meds” , Pam describes medications that treat Dystonia…

Medications “treating” Dystonia are like mediocre relationships – we make do notwithstanding their pitfalls because there’s nothing better waiting on the horizon. Admittedly, we tend to engage in a bit of a juggling act, no one pill supplying everything we need.

Pam finds herself consuming a triad of medications. Her choice of cocktail:

1.) Trihexyphenidyl (Artane)- A member of the Anticholinergic family. One of the more common prescribed medications for Dystonia patients. This drug is responsible for blocking a neurotransmitter (chemicals in the body that transmits signals between nerves) called acetylcholine(signal transmitter from the nerve endings to the muscles)!

Pam says: “Artane appears to be the muscle in my regimen. Artane is an anticholinergic that blocks the action of acetylcholine.”

2.)  Sinemet( Carbidopa/Levodopa)- This drug is referred to as a Dopaminergic agent. It’s known to increase brain dopamine (Dopamine is the neurotransmitter that initiates and controls movement as well as balance).

Pam says: “Sinemet (Carbidopa/Levodopa) is used to synthesize dopamine. Both Artane and Sinemet are indicated for Parkinson’s. They are also used with Dystonia (off-label) to varying effect. Dopamine deficiency is the primary culprit in Parkinson’s, causing an imbalance between acetylcholine and dopamine in the movement centers of the brain.”

3.) Zonegran- Is known as an anti seizure medication. Anti-seizure medications can also help inhibit neurotransmitters.

Pam says: “I’ve never met anyone who takes Zonegran for Dystonia and occasionally come across someone on Tegretol. My assumption with the anti-seizure meds is that the involuntary muscle contractions can perhaps be approached as mini-seizures, but that’s purely my own logic.”

SIDE NOTE:  Thanks Pam for the crash course on Dystonia medications!

Remember, all Dystonia meds are prescribed off-label, meaning they aren’t indicated to treat Dystonia. Bottom line, the doctors can’t know why these drugs work until they understand Dystonia’s underlying mechanisms. And remember, response to medication is variable. What helps one patient may not help another.

My dream would be a cure for vestibular and movement disorders! However, if hope comes in 1000 mg tablets, that is a prescription I will happily fill!

I realize I am asking for hope in pill form, but It’s my hope that in Pam’s lifetime and in my lifetime, medications become available that kick these terrible illnesses into complete remission! We need MUCH MORE than temporary and minimal relief.

Much love,
Marissa

P.S. Be kind to EVERYONE this Holiday Season. Some of your family and friends are taking a cocktail of medications, pushing themselves to participate in holiday gatherings.

References:
U.S. Has Typical Flu and Cold Season, Despite Warmer Winter
NetDoctor- Dystonia 
Dystonia Medical Research Foundation- Glossary 
Mayo Clinic- Dystonia: Treatment and drugs 
RXList- Zonegran
Holistic Online- Parkinson’s Disease
Dystonia-Spasmodic Torticollis: Oral medications and Dystonia 
Dystonia-Spasmodic Torticollis: Dystonia and various medications 
WiseGeek- What is Dystonia 

4 comments

  1. Marissa, The task of describing the state of the art of meds used to treat Dystonia is quite the challenge. Even movement disorder neurologists can’t explain their success…or the lack thereof, depending on the patient. We dutifully take our little bundles of love for lack of a better option and await a prince of a cure to rescue us! -Pamela-

  2. ” We dutifully take our little bundles of love for lack of a better option and await a prince of a cure to rescue us! ”

    Amen sister!

    Much love,
    Marissa

  3. I hear you both!! i think often with any neurological conditions, and suppose other chronic illnesses getting the balance of medications is so hard. Concerning the dizziness, I have tried many different medications – all of them having ‘dizziness’ as a listed side-effect of these type of medications!! There are others that I could try but then there is the worry of possible interactions between them. Never-ending cycles of trial and error with no real relief of symptoms

  4. “I have tried many different medications – all of them having ‘dizziness’ as a listed side-effect of these type of medications!!”

    Thank you for sharing this statement Rhiann! I have ALWAYS questioned this intention.

    Last year I ended up with a terrible sinus infection. I was given a steroid nose spray that ended up suppressing my central nervous system! My vestibular symptoms went haywire.

    I called the pharmacist and asked about the side effects. I recall her stating that the symptoms I was experiencing were not possible. I hung up the phone and realized, for the general population, these symptoms from the medication were not possible.What she didn’t take into account is what happens when this medication is given to someone with a compromised vestibular system! I don’t think the doctor considered my vestibular issues. Her goal was to eliminate the infection and keep me from chronic sinusitis.

    It’s a never ending cycle, but change comes, it just doesn’t always show up as fast as we would like!

    Much love,
    Marissa

Leave a Reply

Your email address will not be published. Required fields are marked *

* Copy This Password *

* Type Or Paste Password Here *