Triggers: Avoid At All Cost

Hello All,

For many individuals with Periodic Paralysis, medications exist, which can be helpful to reduce or stop the symptoms and periods of weakness and paralysis. They are very lucky and can usually maintain a fairly normal life. But, the remainders of individuals suffer moderately to greatly with varying symptoms, muscle weakness and episodes of paralysis.

On a cellular level, triggered by things such as certain food or potassium wrongly enters the muscles or cannot exit the muscles either temporarily weakening or paralyzing the individual. These episodes, whether partial or full-body attacks, may last hours or days and can be very serious and even life-threatening. As discussed in previous posts, there can be dangerous heart arrhythmia, including long QT interval heartbeats (for those with Andersen-Tawil Syndrome), heart rate fluctuation, blood pressure fluctuation, choking, breathing difficulties and cessation, cardiac arrest and/or respiratory arrest. These symptoms accompany the episodes of possible full-body, total paralysis. Some individuals may not be able to open their eyes, speak or move in any way. The individual, despite these symptoms, will remain alert and will be able to hear. Due to these complications, it is extremely important to avoid the episodes.

For individuals with Periodic Paralysis, there are many triggers, which set the partial and total paralysis into motion. It is important to discover these triggers because we need to stop the episodes, if possible, in order to regain the quality of our lives and to prevent the damage being done to our organs as the potassium shifts and depletes in our bodies. This damage can lead to permanent muscle weakness and disability. Other damage and complications may include kidney stones, osteoporosis, metabolic acidosis, lactic acidosis and/or exercise intolerance and more. 

The common triggers of Hypokalemic Periodic Paralysis

The triggers usually responsible for causing potassium to shift in Hypokalemic Periodic Paralysis are:

Eating a large amount of carbohydrates in a meal

Drinking alcohol

Ingesting too much salt

Vigorous exercise

The common triggers of Hyperkalemic Periodic Paralysis

The triggers usually responsible for causing potassium to shift in Hyperkalemic Periodic Paralysis are:

Eating a large number of carbohydrates in a meal

Exercising

Getting cold

Ingesting too much potassium in food or medications

Stress (Good or bad)

Resting after exercise

Fatigue

Fasting

Other triggers for Periodic Paralysis

Triggers can include:

Diet:

Diet can be one of the biggest contributors to episodes of paralysis. The following are some of my offenders or those that have been reported to me or I have found in the research:

Simple carbohydrates: sugar, white flour, etc.

Complex carbohydrates: some grains, wheat, rye, etc.

Meat: mostly red meats

Salt

Caffeine

MSG

Alcohol

Large meals

 

Sleep:

Falling asleep

During sleep

Waking up

Stress:

Stress (Good)

Stress (Bad)

Sitting too long

Changes in the weather

Fatigue

Heat

Cold

Fasting

Dehydration

Exercise:

Some individuals have no problem with exercise but others may not be able to tolerate any type of exercise or very little exercise. This is called “exercise intolerance”. Episodes may develop soon after or the next day. Rest after exercise may set an episode into motion.

 

 Other:

 Electromagnetic Force (EMF’s)

Unknown: I can follow all the rules and still have episodes for unknown reasons.

Over-the-counter medications:

Most over the counter medications, etc can set muscle weakness or paralysis into motion for people with Periodic Paralysis. The following is a list of some compiled from my own known offenders, some that others have told me about, and some I found in my research.

Eye drops, Glycerin, Enemas, NSAIDs

 If the following ingredients are in any products you use…you should stop using them until you are sure they are not causing symptoms:

Sodium Hydroxide, Edetate Disodium, Stearic Acid

They may be in any of the following:

Lotions

Oils

Hair dyes or colors

Antiperspirants

Enemas

Suppositories

Soaps

Shampoos

Shaving creams, foams

Toothpaste

Deodorants

 

Beauty products

Skincare products

Cosmetic products

Bath Salts

Emollients, Ointments, Creams

Hair sprays

Perfumes, colognes

Powders

Hair gels, oils, tonics, mousse

Drugs:

Many, many drugs can set muscle weakness or paralysis into motion for people with Periodic Paralysis. The following is a list compiled from my own known offenders, some that others have mentioned to me and some I found in my research.

If one must take a drug, it is better to begin with ¼ of a normal dose to make sure it will work for you.

Saline Drips

Glucose Infusion: (If an IV is needed, Mannitol can be used

(or diluted solutions in extreme cases)

Oral or Intravenous Corticosteroids

Muscle Relaxers

Beta-Blockers

Tranquilizers

Pain Killers (analgesics)

Antihistamines

Puffers for Asthma

Antibiotics

Cough Syrups

Eye Drops to Dilate Eyes

Contrast Dye for MRI’s

Lidocaine

Anesthetics

Epinephrine

Adrenaline

Medications that cause muscle weakness:

http://www.rightdiagnosis.com/symptoms/muscle_weakness/side-effects.htm

http://www.livestrong.com/article/244725-drugs-that-may-cause-muscle-weakness-or-wasting/

What are the Periodic Paralysis Triggers? 

AVOID AT ALL COST

https://www.periodicparalysisnetwork.com/archives

Medications that cause muscle paralysis:

 
A list of drugs, which can cause muscle paralysis, can be found at this site. Be sure to scroll down the page:
 

What are the Periodic Paralysis Triggers? 

AVOID AT ALL COST

https://www.periodicparalysisnetwork.com/archives

 (For those who have Andersen-Tawil Syndrome there are special medication precautions due to the long QT interval issue and the possible risk of risk of torsades de pointes. The list of medications to avoid in these cases is at the end of this page.)

http://www.atforum.com/SiteRoot/pages/addiction_resources/QTDrugs%209-03-02.PDF

http://www.sads.org/living-with-sads/drugs-to-avoid#.UpuH-ifhe60

What are the Periodic Paralysis Triggers? 

AVOID AT ALL COST

https://www.periodicparalysisnetwork.com/archives

I need to note here that all of the web sites that I used to list drugs and medications that cause muscle weakness and paralysis have disappeared. I do not understand this. This is a serious issue for those of us with Periodic Paralysis. I am happy I saved the lists I found.

Until later…

 

Episodes of Paralysis

Hello All,

I had another very rough day yesterday and I seem to have settled into an “abortive attack”. So, as I contemplate my choice of topics to write about today, I have decided to write about what we call “episodes” or “attacks” of paralysis

It is a misconception that everyone with any form of Periodic Paralysis becomes totally paralyzed periodically. The truth is, some individuals with Periodic Paralysis have never actually had an episode of paralysis. They may, however, over time, develop permanent muscle weakness and need a wheelchair or scooter.  For most individuals, the episodes or attacks, are periods of time with muscle weakness or partial paralysis, rather than full-body paralysis. Over time, these may progress to full-body paralysis. Some individuals may have full-body episodes from the very beginning.

An individual may be only partially paralyzed. Only his or her legs may be paralyzed or they may only be weak. Episodes may occur as sudden falls or dropping to the floor. Feet or legs or arms may go numb and tingly. Muscles in the calves may become very tight and painful. An episode may include overall weakness with arrhythmia and fluctuating blood pressure. Walking may suddenly become difficult due to a weak foot.

Each of these attacks or episodes usually has a distinct beginning and end. Each episode is intermittent. They come and go. Most people will be normal between them or their muscle strength will improve between them. Many develop permanent muscle weakness over time.

That being said, the causes of these episodes and the reasons to avoid them are important to note here. On a cellular level, episodes are triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs, and much more. Potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes may last hours or days. For some, 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 avoid the episodes.

After years of episodes of intermittent muscle weakness, and the development of permanent muscle weakness including my breathing muscles, I developed frightening full-body episodes of paralysis.

The following is my description of what it I experience in an episode. It was written in 2010 for my doctor to help him understand:

”Usually, I wake up in the morning and I am paralyzed. I find I can’t move. I can’t open my eyes. My mouth is open. I can’t breathe through my nose. I have urges to swallow but can’t so there is a choking sound in my throat every few minutes. Sometimes my heart will race or beat irregularly, though usually, there is no problem with my heart. My mouth is very dry. I cannot speak

As I begin to come out of it, my mouth will start to get saliva, my eyes will open but I can only see what is in front of me, since I can’t move my head. Sometimes my eyes will jerk around when I first open them, usually jerking up. My body will sometimes jerk a little. Sometimes there is a big breath my body will take.

Sometimes, I will go back into it. My eyes close, I feel very hot and all the symptoms return. Sometimes there will be a few jerks as I go back into it.

During all of this I am awake and am aware of everything going on around me. Sometimes I begin to cry, due to the frustration, and fear. I can feel the tears running down my cheeks.

If I have these at times other than upon waking, the symptoms are the same.  I get a strange sensation of heat body wide, usually beginning in my back. My eyes will close and then my body goes limp. I may have a few jerks as I am going limp. My mouth will open and I am in it…unable to move, speak or open my eyes.

Sometimes, I don’t go too deep. It is all the same but I am able to open my eyes and can speak a little with a tight tongue and tight lips. My mouth is still open, however. I can’t move my body.

Once one of these begins, it may last from several hours or can be as short as about 10 minutes, if it is a second or third one in a row.

It takes about 15 to 30 minutes to many hours to come out of it enough to move a little and attempt speech, though usually several days to fully recover. I am always left with lingering weakness for many hours that can linger into days. Speaking is difficult. Walking is difficult. My arms and hands come back sooner than my legs. I begin to get feeling back in my body. I can move my lips. I begin to breath thru my nose again. It is difficult to speak or move but it gradually comes back. Speech is very difficult; my lips don’t want to move. My tongue is difficult to move. I will suddenly have an urgency to urinate. If, at this point, I get help to the bathroom, I am like a rag doll, especially my legs. My arms flail, like a child just learning to stand and walk; balancing herself. 

For many hours, I remain too weak to do much of anything but sit up in bed or sit in a recliner. I must use my walker or a wheelchair.

I do not know what brings on or triggers these attacks/episodes (we know now). I know that sleep has something to do with some of them, but not all of them. I know that sometimes, when I wake up during the night with an urgency to urinate, I am coming out of one, because I have all of the symptoms previously discussed. My arms and hands and legs are numb and feeling is just coming back. My mouth is tight and dry. Walking is difficult.” (May 28, 2010)

After that time, my episodes got increasingly worse and have lasted up to 7 hours. I have severe issues with blood pressure fluctuation, heart rate fluctuation, arrhythmia, including long QT interval heartbeats, choking, and breathing difficulties. I must do everything I can to avoid them and now I do have some relief from these major attacks.

 
We have discovered ways to reduce the number and severity of the episodes. We share this with our members and it is included in our books. The following is a quick overview and will be discussed in depth on another day:

We do this by a recommendation of evaluating our medications (most make it worse and create horrible life-threatening complications and even death), knowing if we have high or low potassium issues, monitoring our vitals, eating a diet based on our type of PP, discovering our triggers, getting enough rest, learning to relax, ensuring proper hydration, maintaining a moderate environment, learning our exercise limitations, using possible supplements, obtaining friend and family support, and seeking our own mental well being based on education and understanding of the condition and how it affects us.

Despite doing all of this, we still find ourselves in abortive attacks for periods of time. Abortive attacks are periods of extended time anywhere from hours, days, weeks or months in which some individuals are totally debilitated by extreme muscle weakness without going into full paralysis. The previously described common symptoms may begin but the full attack or total paralysis may not occur. The person is left with severe weakness and other symptoms such as extreme fatigue.  It is difficult to do anything physically and it also can affect cognition abilities, such as memory, thought processing and speech and some become very fragile emotionally. The individual may want to sleep and may have no appetite.
 
In my own case the abortive attacks are totally debilitating and actually worse than the episodes of paralysis. When I am in them, I wish I could slip into paralysis and get it “over with”. I have experienced no worse feelings of weakness and helplessness in my life other than being in a full body state of paralysis.

I have included a slide show of an episode I experienced a few years ago. I also have videos of a few and will share if someone is interested in seeing a full-body episode of Periodic Paralysis.

Until later…