I am re-posting this article in two parts. It was not actually posted on my blog but I have a link to it in another site. There may be issues with the link so I decided to post it again. This article contains the facts about Periodic Paralysis and the other article, "My Story" is the personal narrative of how I got diagnosed.
What is Periodic Paralysis?
One of the neurologists who diagnosed me recently said, “Periodic Paralysis is a disease unlike any other. It is not a neuromuscular, mitochondrial or autoimmune disease nor is it a muscle myopathy. It is in a category all its own and needs to be treated in non-conventional ways.” He further stated, “Doctors need to keep an open mind and think ‘outside of the box’ when it comes to diagnosing and treating Periodic Paralysis.”
Pins and needles sensation
Pulse issues-fast heart beat
Breathing problems-barely breathing
One who suffers with Hyperkalemic Periodic Paralysis may experience a variety of symptoms in relationship to their hyperkalemic paralytic attacks including but not limited to the following:
Tightness in legs
Strange feeling in legs
Pulse issues - absent, slow, or weak
Breathing problems-fast breathing
One who suffers with Normokalemic Periodic Paralysis may experience a variety of symptoms including those seen in both the hypokalemic and hyperkalemic paralytic attacks as listed above.
One who suffers with Andersen-Tawil Syndrome may experience a variety of symptoms in relationship to their ATS paralytic episodes including but not limited to any of the symptoms from above depending on whether the attack is hypokalemic, hyperkalemic or normokalemic. They also have long QT interval heartbeats, a life threatening arrhythmia, which is a marker for ATS. Ventricular arrhythmia is common as is fainting.
Discover triggers: Simple carbohydrates,
Medications including over-the-counter medications,
Rest after exercise,
Sleep, all aspects: falling asleep, during sleep, waking up and napping.
Stress (good or bad),
Food in general
And ? I still have not discovered all of my triggers. No matter how careful I am, I can still go into paralysis without knowing why.
Following a proper ph balanced diet, eating from the farm; not the factory
Take no medications including over-the-counter medications
Get plenty of rest
Stay well hydrated
Constantly monitor vitals
Take potassium when needed (if low potassium) (If under 3.0 go the the hospital)
Take sugar or glucose tablets as needed (if high potassium) (If over 6.5 go to hospital)
I use several pieces of medical equipment for measuring my vitals. These items are necessary for my caregiver to monitor me while in paralysis or for me to know which direction my potassium shifts for proper treatment.
Cardy meter (potassium reader),
Finger pulse oximeter,
Blood sugar monitor,
Wrist blood pressure monitor,
Thermometer and a digital
pH balance reader
Gather a team of medical professionals:
I have an MD as my primary care provider and a cardiologist. I no longer have a renal specialist or neurologist.
Continue to gather information: I must educate myself, my family, my friends, my neighbors, my community, my doctors, my hospitals, my dentist, my optometrist and my local first responders about every aspect of my condition. Knowing and understanding this disease and syndrome eases my fears and the fears of those around me and assists me with proper management and treatment. Knowing others will be able to aid me during paralysis episodes is essential.
Join Periodic Paralysis social groups: Being part of a Periodic Paralysis community is vital. I have discovered I am not alone. I receive encouragement, support, sympathy and empathy. I gain information and knowledge from others who live with the same enemy daily. I ask questions and share ideas.
The above plan is followed constantly and diligently. It is a constant “tightrope” I must balance, day-by-day, minute-by-minute; second-by-second. I cannot let up for even a minute or I can go into paralysis and the cycle begins anew.