Medical Treatments for Periodic Paralysis
Do you, or someone you love, suffer from Periodic Paralysis? If you have Periodic Paralysis, you may sometimes feel like there isn’t much hope for your health to get better. You’re probably used to feeling confused and worried because you may not fully understand what’s going on with your body. Other people don’t always understand what is happening to you, either. It can be easy to feel pessimistic.
Fortunately, there is hope. Periodic paralysis can be managed. No matter which of the periodic paralysis types you have, there are treatments out there for you.
We at the PPA are here to help you, and we want to show you the options that you have to treat your symptoms. First, let’s start with some basic information.
What is Periodic Paralysis?
Periodic paralysis is a term for a group of genetic disorders that cause “episodes,” or “attacks,” of muscle weakness, stiffness, or paralysis. The problem occurs within the ion channels in muscle cells. According to Britannica, “Ions are atoms or groups of atoms that gain an electrical charge by losing or acquiring electrons.” These electrically-charged particles, such as sodium and potassium, go in and out of muscle cells to make muscles move. They pass through a cell’s membrane, or outer shell, through passageways called channels. People with periodic paralysis have mutations in these channels so that the ions can’t move in and out in the normal way. This means that muscles aren’t able to move like they’re supposed to.
Getting periodic paralysis treatment can be difficult because getting a diagnosis is difficult! There’s a saying that goes, “When you hear hooves, think horses, not zebras.” The word “Zebras” is a metaphor for something that is rare, and “horses” is a metaphor for something that is common. Some doctors mainly have “horses” on their minds, so when they are trying to figure out the cause of a patient’s symptoms, they think about common diseases instead of rare diseases. One big part of the PPA’s mission is to give doctors more knowledge and tools to recognize the “zebra” known as periodic paralysis.
Periodic Paralysis Types
There are multiple periodic paralysis types that exist, and treatments may not work the same way for different types. The two most common types are hyperkalemic periodic paralysis (hyperPP) and hypokalemic periodic paralysis (hypoPP or HOKPP). Those words may look almost the same, but their meanings are opposite. “Hyperkalemic” means that the episodes of muscle weakness come with an increase in the blood’s potassium levels. However, “hypokalemic” means that these episodes come with a drop in blood potassium levels.
Another one of the periodic paralysis types is Andersen-Tawil Syndrome, which causes episodes of muscle weakness but also comes with heart irregularities. Yet another type is thyrotoxic periodic paralysis, which is a periodic paralysis type that occurs in people who have high levels of thyroid hormone in their blood. There are more types of periodic paralysis out there, so it’s a good idea to speak with your doctor and keep a good record of what symptoms you have. Also, you can visit our Ask the Experts page to submit a question to the PPA Medical Advisory Board in order to learn more about this disease and its many types.
Hypokalemic Periodic Paralysis Symptoms
People who have hypokalemic periodic paralysis experience episodes of extreme muscle weakness that can last for hours. Arms and legs are often affected, but sometimes, eye muscles and muscles involved in breathing and swallowing are affected. During these episodes, the patient’s blood potassium levels are unusually low. Some things that cause these episodes to happen are resting, eating a high-carb meal, and stress.
Hyperkalemic Periodic Paralysis Symptoms
The main symptom of hyperkalemic periodic paralysis is episodes of extreme muscle weakness. These episodes usually last 15 minutes to an hour, but can sometimes last much longer. It’s also possible to have a stiff feeling in your muscles even between full-blown episodes. Muscles all over the body can be affected by this disorder, but most often, it occurs in the arms, legs, and back. Hyperkalemic periodic paralysis sufferers have an increased level of potassium in their blood when these episodes happen, and eating potassium-rich foods is one trigger for these episodes. However, the episodes can also be caused by resting after exercise, stress, and cold.
Hypokalemic Periodic Paralysis Treatment
In order to prevent permanent muscle weakness, getting hypokalemic periodic paralysis treatment is vital. Since this form of periodic paralysis involves a drop in potassium levels, taking potassium supplements regularly can possibly help. Potassium can also be taken during an episode to try to overcome muscle weakness. Managing stress is another key strategy to help reduce your chances of having a muscle weakness episode. In addition, it might be helpful to eat small, frequent meals throughout the day instead of larger meals with a lot of carbohydrates, because a high-carb meal can trigger an episode.
Your doctor might recommend medications that can help alleviate hypokalemic periodic paralysis symptoms. Effer-K is one that can increase your potassium. It’s a potassium citrate tablet that dissolves in water, so all you have to do is drop it in the water and drink it. Another way of getting more potassium is by taking potassium chloride, and it comes in multiple forms, such as liquid, powder, and tablet.
Potassium-sparing diuretics, or water pills, are a different option that could work for you if you have hypokalemic periodic paralysis. Because this is a disorder that lowers your potassium, you may benefit from these diuretics since they help your body keep more potassium. Some types of potassium-sparing diuretics include spironolactone, amiloride, and triamterene.
Hyperkalemic Periodic Paralysis Treatment
It’s important to get hyperkalemic periodic paralysis treatment because even though the muscle weakness attacks are usually temporary, it’s possible that they can eventually cause permanent muscle weakness. One thing you can do is to try to avoid things that trigger the episodes. For example, you may need to cut down on your potassium intake. Managing your stress levels is something else you can do to reduce the likelihood of an episode since stress is a trigger. Writing in a journal about things that make you feel stressed is a good first step to take in managing stress.
There are other hyperkalemic periodic paralysis treatments, and your doctor can determine what is best for you. Some people who have hyperkalemic periodic paralysis are given calcium injections to try to end a muscle weakness episode when it occurs. Some have found that eating carbohydrates during an episode is effective. Doing light exercises is another way to possibly regain muscle strength while an attack is happening.
Using an albuterol (AKA salbutamol) inhaler has helped some people ease their hyperkalemic periodic paralysis symptoms. This inhaler is often used by asthma or COPD sufferers to help them breathe more easily, and it can also be useful during a hyperkalemic periodic paralysis episode. During an episode, the inhaler might be able to lower potassium and relax the muscles involved with breathing. Another drug that can possibly help is acetazolamide, which is used to treat a variety of problems such as glaucoma, dizziness, headache, fatigue, and more. Periodic paralysis sometimes causes other uncomfortable symptoms besides muscle weakness, so your doctor may determine that acetazolamide is a solution.
“Sulfa” Allergic Patients
There is some evidence to support that “sulfa” allergic patients can take acetazolamide and dichlorphenamide, which contain sulfur in a different part of the molecule than sulfonamide antibiotics. That is, a “sulfa allergy” may not be an absolute contraindication to acetazolamide and dichlorphenamide.
Diamox is a drug and the generic is Acetazolomide. Just like Keveyis generic is Diclorphenamide. With Diamox you can have it compounded at a compounding pharmacy without the sulfa as it is used as a binder in the drug and has no medicinal value as to how it works. It could work as you mention for some people as it is not the strength of an antibiotic. Some patients are allergic to Sulfa drugs but use Diamox in its original form.
KEVEYIS Periodic Paralysis Treatment
KEVEYIS is a prescription drug for periodic paralysis patients that was created by Strongbridge Biopharma. What makes it so significant is that it’s the first and only FDA-approved periodic paralysis treatment! Each KEVEYIS tablet contains 50 mg of the active ingredient, dichlorphenamide, and a tablet is usually prescribed to be taken once or twice daily. This medication can be used for hyperkalemic and hypokalemic periodic paralysis, as well as other similar diseases.
KEVEYIS has gone through clinical studies to prove that it is effective and safe. The studies showed that KEVEYIS caused patients to have two to three fewer attacks per week! Side effects are usually mild and can fade away over time. One example of this is KEVEYIS patient Kim, who experienced a tingling sensation and blurry vision when she started taking the medication, but over time, those effects faded. KEVEYIS patients have experienced how this medication has changed their lives for the better. Janine is a great example of this because she tried another periodic paralysis treatment in the past that ended up not being effective. However, when she started taking KEVEYIS, her symptoms became more manageable.
At the 2020 PPA virtual conference, KEVEYIS brought together doctors and patients to talk about how to handle periodic paralysis symptoms. You can watch the video here!
Learning about periodic paralysis treatment can be overwhelming. It’s a lot to take in! The PPA is here to help. Please contact us if you are not sure where to turn to get answers. Also, it’s important to have a conversation with your doctor about the various treatment options so that they can recommend something that’s helpful for you.
Remember, there is hope. It really is possible to keep your periodic paralysis under control so that you can enjoy your life more. We at the PPA are doing what we can to support periodic paralysis treatment research so that more treatments can be created. And one day, we hope to find a cure!