Each day I am doing a little better after my Christmas Day setback, though last night I had a terrible headache, which I very seldom get. I went to bed early and woke up without one this morning, so for that I am very thankful. Research indicates that 50% of individuals with Periodic Paralysis suffer from migraines. My mother, who I am sure had PP, had a headache everyday of her life from the time she was 16 until the day she died at age 85.
As I discussed in some of my previous blogs, Periodic Paralysis (PP) is a very rare mineral metabolic disorder. Individuals with various forms of PP suffer the effects of partial or full body muscle weakness or paralysis, which may be accompanied by very serious symptoms. On a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs, etc., potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes can be full body lasting hours or days. Dangerous heart arrhythmia, heart rate fluctuation, blood pressure fluctuation, choking, breathing difficulties, cardiac arrest and/or respiratory arrest can also accompany the episodes. Due to these complications, it is extremely important to monitor the vitals of the individual during an episode.
Several pieces of medical equipment can be very handy for measuring your vitals. These include: a potassium meter, a finger pulse oximeter, blood sugar monitor, stethoscope, wrist blood pressure monitor, a thermometer and a digital ph balance reader. These items are necessary for caregivers to monitor vitals primarily because the person in paralysis is unable to communicate. The vitals serve as the communication tool. Keeping written records is very important especially when making connections between individual events.
There are two types of potassium meters, however, one has been discontinued. Neither one is a medical device. This means medical insurance will not pay for them and they are very expensive. The newest one is easier to use but costs about $350.00. It measures the potassium level in either the blood or the saliva. Using one of these little devices will give one a baseline for their normal levels and for when their potassium is high or low. We now know that most of us who have various forms of Periodic Paralysis have our own level of normal and our own unique level of what is high or low for us as an individual. Keeping record of our findings is very important. Although not recognized by many doctors, some are willing to recognize their worth and rely on the findings. During an episode, one’s potassium levels can be checked as often as possible or needed. Caregivers can decide how to proceed if the levels are too high or too low.
The digital oximeter is a small and inexpensive device, which is placed on the tip of a finger. It reads the oxygen level in our blood. This is important, because when in paralysis, our oxygen levels may drop. If oxygen levels dip too low and oxygen is not handy, it can indicate that an ambulance may need to be called. The device also displays the heart rate. The caregivers will know if the patient is in tachycardia (fast) or bradycardia (slow) heart rate. The intensity of the heartbeat is also displayed and can indicate arrhythmia (irregular heart beat).
Blood Sugar/Glucose Meter
These devices are readily available. Though used normally for individuals with diabetes or hypoglycemia, the meters are important devices for those with PP. Having high sugar levels may trigger an episode. When the body stresses during an episode, sugar levels may rise. If the sugar moves with the potassium, it may cause pain. The stick for pricking the finger may also be used with the potassium reader.
Wrist Blood Pressure Cuff
With all of the tools in place and diligently recording the results, there is no more guessing. The caregivers are informed and can easily relax knowing precisely what is happening. As they take the measurements and record the results, they can tell the patient exactly what is happening. The patient can then relax, knowing they are out of danger. If, on the other hand, the results indicate an emergency situation, an ambulance can be called or the caregiver will know what to do and the patient will know that help is on the way. In conclusion, taking the "guessing" or the "unknown" out of the equation makes a very big difference for everyone concerned.