My wife and I declared war on this disease, months ago. I think we may be making progress and experiencing the fruits of our labor!
Our list of weapons is growing. Among them: Lortab, Zanaflex, Baclofen, rest, A/C, hot salt baths, numerous topical ointments, Pro-Air inhaler, wheelchair, Rolator walker, canes, ice-packs, heating pads, BCAA, protein drinks and a wonderful Tequila drink we affectionately call the Bobaritta. These are all in addition to my normal routine and ingestation of more than 20 pills I take on a normal day. Each has a specific time, place, symptom to combat and method of implementation.
What we are noticing is that we are having an affect on the change of the nature of the attacks. Prior to warfare, we noticed that I would stay in spasm, a “spasmodic” event to coin a term, from 36 to 96 hours. They were agregious and would destroy my muscles. It was my theory that if we could lessen the veracity of these events and encourage my muscles to heal prior to the next attack, then we could improve the quality of my life.
I think we are witnessing the fruits of our labor.
I just went through a few weeks of good and bad. I observed that I would have 4-hour spasmodic events , followed by 4-hours of deep sleep, approximately 18 hours appart. This would last for about a week. It befuddled me because I initially thought that we were only causing the spasmodic events to grow in frequency, but decrease in veracity. Then, I realized that the whole mess lasted about 96 hours. Taken in toto, the sequential events constituted one 96-hour spasmodic event.
On the ramping-up of the event, I would begin my warfar, taking the Zanaflex, then an hour, then Lortab, coupled with rest and A/C. Movement would be reduced to using a wheelchair for safety and to prevent excitation of the skeletal muscles. A BCAA drink, the mixture purchased from GNC, would be consumed in the third hour. Heating pads and/or cold-packs are employed depending the the muscles reaction to them. If possible, a 20-minute soak in an essential-oil & epson salt hot bath was done. This can not always occur due to mobility and/or the availability of a watcher. The final pièce de résistance is Tequila. I quickly ingested 80-proof drink will kill the spasms. Unfortunately, this could also kill me.
After the event terminates, intense fatigue takes over and I sleep for several hours. Sometimes, days.
Protein drinks, targeting powerlifters, from GNC are drank daily. This is to give the muscles what they need to repair quickly. Oral Baclofen is taken every four hours on a regular basis. The modification of the Baclofen schedule was a big step. Small doses taken every four hours maintains a trickle of Baclofen in my system around the clock. I have an alarm set at 1 and 5 am during the night to help me take them. This mimics the trickle of Intrathecal Baclofen my pump delivers to my spine.
With this rigid schedule of medication, we have been able to attend an evening play at the local playhouse and, two days later, an orchestral performance. Both events were attended in wheelchair to provide me with a comfortable seating. I had to medicate pre- and per-events to address the normal seizing of the muscles which comes from continued static positioning. Staying still has never been one of my strong points. Now, I know why — my muscles would frequently cramp, and I would move to relieve the pain. The muscle spasms, on some level, has been with me my entire life. I just didn’t recognize it as such.
There is much more I could write, but the purpose of this article is to show the progress we have made in combatting the acute phase of this disease. My theory is that we have effective treatment for the chronic phase of the disease, but it is incumbant upon my wife and I to figure out the acute. Without staying under video surveilance for a week and grabbing an event in it’s entirety, our best bet is in relating our information to our team of doctors.
To God be the Glory,
Jay C. “Jazzy_J” Theriot
Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on Freenode.net –> see: irc://irc.freenode.net/ExtremeSpasticity You will need an IRC Client such as HexChat to connect.