When to Call For an Ambulance

Hello All,

I continue to do well and have been able to be more active after stopping my supplements. I believe they were making my system more acidic. I have now become more balanced. It is still very clear, however, that no matter how much better I feel; I still have exercise intolerance and permanent muscle weakness. I must continue to use oxygen, eat a pH balanced diet, stay hydrated, get enough sleep, avoid my triggers, use my power wheelchair, and rest as much as possible (all day). I must continue to “walk the tightrope”.

This morning I received a link to a group who is writing a book about “harm in the Emergency Room” (ER). They are collecting as many stories as possible of people who have received mistreatment in the Emergency room. They hope to stop it. If anyone would like to share his or her story you may go to:

http://www.stoperabuse.org/

I decided that today should be the day I share my experiences in the ER. I will do this in three parts over the next three days. Today I will discuss when to go to the ER. Tomorrow I will discuss avoiding the pitfalls in the ER and the third day I will tell of my experiences in the ER.

When to call an ambulance or go to the Emergency Room if you have Periodic Paralysis

After studying Periodic Paralysis and Andersen-Tawil Syndrome, I have learned that an ambulance does not need to be called every time I become paralyzed. When I have an episode of paralysis, I will usually be fine in a few hours. However, if I have trouble with my breathing, my heart or with choking or swallowing, then an ambulance may be necessary.

I want to add here, that an important reason for going to the ER, if a person does not have a diagnosis, is to get the attacks documented, a "paper trail" is often needed. Proof of the episodes must be established.

The following is written about Periodic Paralysis in relationship to the need to call for an ambulance or to go to the emergency room:

Go to the emergency room or call the local emergency number (such as 911) if you faint or have difficulty breathing, speaking, or swallowing. These are emergency symptoms.

http://www.nlm.nih.gov/medlineplus/ency/article/000312.htm

In more serious cases, the swallowing or breathing muscles may be involved.

http://www.activeforever.com/a-642-familial-periodic-paralysis.aspx

When dealing with hyperkalemia, high levels of potassium, the following may be helpful. I have been told, if the level is 6.0 or more than emergency treatment may be necessary:

The following is a guideline for hyperkalemia:

Hyperkalemia is a medical condition of elevated bloodstream levels of potassium. While the normal blood potassium level is 3.5-5.0 mEq/L, mild hyperkalemia can be between 5.1-6.0, moderate between 6.1-7.0, and severe above 7.0. In an extreme case, hyperkalemia can be an emergency as the condition may lead to fatal effects.
http://hyperkalemia.net/

Go to the emergency room or call the local emergency number (such as 911) if you have symptoms of hyperkalemia. Emergency symptoms include:

Absent or weak heartbeat

Changes in breathing pattern

Loss of consciousness

Nausea

Weakness

http://www.nlm.nih.gov/medlineplus/ency/article/001179.htm

More serious symptoms of hyperkalemia include slow heartbeat and weak pulse. Severe hyperkalemia can result in fatal cardiac standstill (heart stoppage). http://www.medicinenet.com/hyperkalemia/page2.htm

Mild hyperventilation is a symptom of hyperkalemia due to metabolic acidosis. http://www.ehow.com/facts_5446075_hyperkalemia-symptoms.html

Symptoms of hyperkalemia include abnormalities in the behavior of the heart. Heart abnormalities of mild hyperkalemia (5.0 to 6.5 mM potassium) can be detected by an electrocardiogram (ECG or EKG). With severe hyperkalemia (over 8.0 mM potassium), the heart may beat at a dangerously rapid rate (fibrillation) or stop beating entirely (cardiac arrest). Patients with moderate or severe hyperkalemia may also develop nervous symptoms such as tingling of the skin, numbness of the hands or feet, weakness, or a flaccid paralysis, which is characteristic of both hyperkalemia and hypokalemia (low plasma potassium). http://www.healthline.com/galecontent/hyperkalemia#ixzz1Imk6qHHA
 

When dealing with hypokalemia, low levels of potassium, the following may be helpful.

Mild hypokalemia is often without symptoms, although it may cause a small elevation of blood pressure,^[2] and can occasionally provoke cardiac arrhythmias. Moderate hypokalemia, with serum potassium concentrations of 2.5-3 mEq/L, may cause muscular weakness, myalgia, and muscle cramps (owing to disturbed function of the skeletal muscles), and constipation (from disturbed function of smooth muscles). With more severe hypokalemia, flaccid paralysis and hyporeflexia may result. There are reports of rhabdomyolysis occurring with profound hypokalemia with serum potassium levels less than 2 mEq/L. Respiratory depression from severe impairment of skeletal muscle function is found in many patients.

Some electrocardiographic (ECG) findings associated with hypokalemia include flattened or inverted T waves, a U wave, ST depression and a wide QT interval.

http://en.wikipedia.org/wiki/Hypokalemia

Hypokalemia is defined as a potassium level less than 3.5 mEq/L.

Moderate hypokalemia is a serum level of 2.5-3 mEq/L.

Severe hypokalemia is defined as a level less than 2.5 mEq/L.

http://emedicine.medscape.com/article/767448-overview

Cardiac arrhythmias This phrase is used to collect a group of different conditions where the heart has abnormal electrical activity. It does not mean that the heart beat is irregular, although it can be, it can also be regular. The speed of the heart beat may be either fast or slow as compared to normal. In some cases of cardiac arrhythmias, they can be medical emergencies and a life-threatening situation.

http://www.hypokalemia.net/symptoms.php

If an individual has Andersen-Tawil Syndrome (ATS), they experience episodes of paralysis based on low or high potassium levels or there may be episodes in normal ranges. Those with ATS experience serious ventricular arrhythmia with the possibility of life-threatening long QT interval heartbeats. They must be monitored closely. They may experience any of the above symptoms, especially, trouble with breathing, with the heart or with choking or swallowing. If these occur then an ambulance may be necessary.

However, it is best to be prepared with the emergency chart posted in:

Emergency Instruction Chart November 19, 2012

It is imperative for one with Periodic Paralysis to know the above information and to have this important information written and handy in case an ambulance must be called. I keep this information in a plastic folder along with everything I know is important and that the paramedics and EMTs must know when coming to my aid in an emergency and for the doctors when I get to the hospital. I approach it as if I will have no one with me to explain my needs. I keep it near the door and take it with me when I leave home.

Tomorrow:  Avoiding the pitfalls of the emergency room 


Until later...

Potassium and Potassium Meters November 14, 2013

Hello All,

I made it through another day!! Although I was able to get everything completed and added to the new blog, I ended up having a difficult afternoon. I suddenly had chest pains and overall weakness. I first took my blood pressure and found it was suddenly high even though I was sitting in my recliner and had been for over an hour. My heart rate was up. I checked my blood sugar level and found it was high. These were all signs that my potassium levels were low, so I checked my potassium level with my potassium meter and found I was indeed low. I took some potassium bicarbonate, and within thirty minutes, I began to feel a little better and never went into an episode of paralysis.

However, I never did regain my strength and did not feel strong enough to get up for dinner so Calvin brought it to me. I was thankful it was mostly soft food because I did not have the strength to chew much and because earlier in the day, as I was eating breakfast, my jaw bones near my temples began to have severe pain as I chewed and I was unable to complete my meal. I had soft food for lunch also. I will have to eat soft food again today....

Yesterday, in our educational support group, there was quite a discussion about the purchase of potassium meters and a newer device for measuring our potassium levels in our saliva or blood. They work much like a glucose meter, which measures the level of sugar in our blood. However, the two biggest differences are; the meters are not medical devices and are very expensive. The original device, which is no longer being manufactured, was $250.00 and the new potassium meter is $350.00. Because they are not medical devices, insurance will not pay for them. This is a large issue for those of us with Periodic Paralysis, because potassium shifting is the bottom line of our condition. When it shifts, we become either weak or paralyzed. We need to know if our potassium level is high, low or in normal levels, so we can know how to treat our symptoms.

I wrote the following to the company to explain why and how we need and use potassium meters and why the price needs to be lowered and why it would be a good thing to have it declared a medical device:

"Dear Sirs:

I have a very rare hereditary disease called Periodic Paralysis (PP). The type I have, a variant of Andersen-Tawil Syndrome (ATS) Type 2,  is the most rare type of this condition. It is an ion channelopathy. It affects the body on the cellular level.

Those that have this condition have a problem with potassium entering the muscle cells in error. When this happens the muscles weaken or become paralyzed and it can last from a few minutes to several hours to days at a time. As the muscles are paralyzed, it effects the heart causing life-threatening arrhythmia (including Long QT interval heartbeat), tachycardia or bradycardia, fluctuating blood pressure, low oxygen levels, choking and the possibility cessation of breathing,  cardiac arrest and /or respiratory arrest.

Individuals with PP have a myriad of triggers which can set this into motion: certain foods, stress, exercise, medications, sleep, salt, sugar, wheat, gluten, heat, cold, IVs, anesthesia and more. When we eat or experience a trigger, it causes the potassium in our body to either increase or decrease or just shift in normal ranges. When either of these happen,  the weakness or paralysis and serious symptoms begin. So, we must discover and know what the triggers are in order to avoid them. Sometimes we can do everything right and we can still have episodes of paralysis.

When we begin to feel symptoms, we can use a potassium meter device that can let us know if our potassium is high, low or normal and this allows us to know how to treat it or a caregiver to know how to treat us or whether they need to call for an ambulance. Unfortunately, this device is not a medical device and as long as this device is not a medical device, insurance companies will not pay for it. You now have a new device which is apparently easier to use but costs $350.00. Most families cannot afford this.

If made into a medical device, your sales would increase because they would be paid for by medical insurance and every family with an individual with Periodic Paralysis that needs one could get it. As well, every paramedic, ER, hospital, doctor's office and school nurse could then have one, paid for by the company they work for, and be trained on how to use them so they can know instantly what is happening with the person's potassium levels for quick treatment. Individuals may die while they wait for traditional blood tests to come back from the lab with the results.

I have a website and discussion and support groups to help others with this disease. We have members from all over the world and most of them cannot afford  this device and suffer daily in paralysis and the other life threatening symptoms I discussed. Many of them have low to no quality of life. This device would help by knowing sooner whether they need to take potassium or avoid it or for their caregivers to know if they need to go to the hospital, etc.The quality of life could improve for many individuals with Periodic Paralysis. Sales would increase because there is a world-wide need.

Please visit my website to learn more:    www.periodicparalysisnetwork.com

Thank you"

I am now in contact with employees from this company. They have been very helpful and we are in discussion over these issues. We remain hopeful that changes can be made making this device more affordable and accessible.

Have a good day!

Until later...