pH Levels and how they affect Periodic Paralysis Patients

If you are not as successful as you would like to be with controlling your symptoms with your medications, diet, and lifestyle changes, your blood pH level might be the missing piece that provides you with better results. The difference between pH levels in Hypokalemic Periodic Paralysis and Hyperkalemic Periodic Paralysis patients is very important to know.

Lower blood pH levels (acidic) may benefit patients with Hypokalemic Primary Periodic Paralysis, while higher blood pH levels (alkaline) may benefit patients with Hyperkalemic Primary Periodic Paralysis. 

Medications and their effects on pH levels

Did you know that your genotype can also play a role on how effective medications can work? Click this link to learn more. 

Studies have shown that CAIs (acetazolamide and Keveyis) are at least partially useful because they lower your blood pH levels. This can also be seen in routine blood tests as a decrease in bicarbonate.

It’s not too surprising that bicarbonate levels in the blood will be low if you’re taking a CAI drug. This is important for doctors and patients alike to know.

To be most effective, CAIs need to not have high bicarbonate. If you notice that your bicarb is high and can’t be lowered, it could mean that you’re not taking enough CAI to protect against Hypokalemic Primary Periodic Paralysis.

CAIs (that lower pH) are often helpful for weakness and for myotonia in HyperPP/PMC. However, there’s a lack of agreement between the animal studies (well-controlled for single variables like pH) and the patient experience (more important, but not well controlled in general).

There is a chance that this new treatment can help people with myotonia, just like it has helped animals. It may not be proven yet, but it could help a lot of people living with Hyperkalemic Periodic Paralysis if its effectiveness is proven.

For example, some reports in the medical literature say that acetazolamide (which should lower pH) might be beneficial for reducing muscle stiffness in PMC or HyperPP.

Disclaimer: Please, consult your healthcare provider for more info about this topic and obtain a personalized diagnosis and treatment.

Bicarbonate and the role it plays in pH Levels and Primary Periodic Paralysis 

Bicarbonate is equivalent to carbon dioxide in your body; it’s a waste product. This waste is created when you burn food for energy. Bicarbonate is a type of electrolyte, which keeps your body hydrated and helps to maintain the right level of acidity in your blood.

Testing bicarbonate regularly can help patients with Primary Periodic Paralysis manage their symptoms better.  Lower blood pH levels (acidic) may benefit patients with Hypokalemic Primary Periodic Paralysis, while higher blood pH levels (alkaline) may benefit patients with Hyperkalemic Primary Periodic Paralysis. 

Hypokalemic Primary Periodic Paralysis patients that take Potassium Bicarbonate (many patients call them “Fizzies”) need to consider that the bicarbonate in the tablet could affect the beneficial results of the potassium. 


​How your workout or activity level could be affecting the balance of blood pH

Setting ourselves up for success starts with making sure we have as much information as possible. For some of you that might not be successful in any amount of exercise or increasing your level, may find that your pH level is keeping you from being successful. 

Light exercise to “warm up” and prevent an incipient attack of PP may partly be caused by lowering pH. ​Conversely, to abruptly stop exercising and sit motionlessly may trigger an attack because the blood pH that was lowered by exercise will now rapidly rise back to baseline levels.

​We believe it is this rapid rise that contributes to an attack of weakness in Hypokalemic Periodic Paralysis (we didn’t see this for Hyperkalemic Periodic Paralysis patients). We also need to remember that we may never be able to do what we once did, and we need to find our “New Normal” when it comes to our limits.