When “Hypo” Doesn’t Look Like Hypo

When “Hypo” Doesn’t Look Like Hypo: 

Understanding Potassium Levels During Attacks

This question comes up often in the Periodic Paralysis community:

“I’ve always been diagnosed as HypoPP. My attacks are classic—loss of limbs and core, difficulty swallowing, low potassium—but today my potassium was 4.1. Has anyone else experienced this?”

The short answer is: yes—many people with Periodic Paralysis experience this, and it does not automatically mean you were misdiagnosed.

Periodic Paralysis Is a Mineral Metabolic Disorder

One of the biggest misunderstandings about Periodic Paralysis is the idea that it is defined solely by serum potassium numbers. As explained throughout my books, Periodic Paralysis is a mineral metabolic and channel disorder, not simply a “low potassium” or “high potassium” disease.

What matters most is what potassium is doing inside the cells, not just what shows up in a blood draw.

Why Potassium Can Be “Normal” During a Severe Attack

A potassium level of 4.1 is technically normal, but that does not rule out a HypoPP-type attack. Here’s why:

• Potassium can shift rapidly between the blood and the cells
• During an attack, potassium may already have moved back into the bloodstream by the time labs are drawn
• Stress, IV fluids, food, rest, timing, and even the act of being tested can alter serum levels
• Blood tests are snapshots, not real-time metabolic maps

This is why many people experience classic paralysis symptoms with normal—or even high—potassium readings.

Symptoms Matter More Than the Number

In my books, I emphasize this repeatedly:

Periodic Paralysis is diagnosed by pattern, triggers, response, and lived experience—not just lab values.

Classic features include:

• Sudden loss of limb and core strength
• Difficulty swallowing or speaking
• Respiratory involvement
• Episodes triggered by rest after activity, food, stress, illness, or sleep
• Recovery patterns that are familiar and repeatable

If the symptoms match, the condition does not magically disappear because potassium reads “normal” that day.

Mixed, Variant, and Overlapping Forms Are Common

Many people do not fit neatly into textbook categories like “Hypo” or “Hyper.” In reality, mixed and variant forms are common, especially over time.

It is also possible for:

• The same person to experience low, normal, or high potassium during different attacks
• Potassium needs and responses to change with age, illness, hormones, or cumulative damage
• Attacks to evolve while still being part of the same underlying disorder

This does not mean your diagnosis was wrong—it means the condition is more complex than the label.

A Critical Reminder About Treatment

This is why blind potassium replacement based solely on numbers can be dangerous. What helps one person—or even what helped you in the past—may not always be safe now.

Your body’s signals, patterns, and reactions matter.

You Are Not Alone

If you’ve ever thought:

• “This feels exactly like my usual attack, but the labs don’t match”
• “Something doesn’t add up”
• “Doctors seem confused by this”

You are not imagining it—and you are not alone.

Periodic Paralysis does not always follow simple rules, and your lived experience is valid medical data.

 

 

References

1. Hunter, Susan Q.
   Living With Periodic Paralysis: The Mystery Unraveled
   — Personal accounts, metabolic explanations, symptom patterns, and real-world patient experiences with Periodic Paralysis.
2. Hunter, Susan Q.
   What Is Periodic Paralysis?: A Disease Like No Other
   — Detailed discussion of Periodic Paralysis as a mineral metabolic and channel disorder, including potassium shifts and diagnostic challenges.
3. Hunter, Susan Q.
   The Periodic Paralysis Guide and Workbook: Be the Best You Can Be Naturally
   — Practical guidance on recognizing symptoms, managing triggers, understanding lab limitations, and listening to the body.
4. Hunter, Susan Q.
   A Bill of Rights for Periodic Paralysis Patients
   — Advocacy-focused reference addressing misdiagnosis, dismissal of patient experience, and the limitations of standard medical frameworks.
5. Cannon, S. C.
   “Channelopathies of Skeletal Muscle Excitability.”
   Comprehensive Physiology
   — Foundational scientific explanation of skeletal muscle channel disorders, including sodium and potassium channel dysfunction.
6. Lehmann-Horn, F., & Jurkat-Rott, K.
   “Voltage-Gated Ion Channels and Hereditary Muscle Disorders.”
   Physiological Reviews
   — Explains intracellular ion shifts and why serum potassium levels may not reflect muscle cell behavior during attacks.
7. Statland, J. M., Fontaine, B., Hanna, M. G., et al.
   “Review of the Diagnosis and Treatment of Periodic Paralysis.”
   Muscle & Nerve
   — Discusses variability of potassium levels and overlap among Periodic Paralysis subtypes.
8. Jurkat-Rott, K., & Lehmann-Horn, F.
   “Muscle Channelopathies and Critical Points in Diagnosis.”
   Acta Myologica
   — Addresses diagnostic pitfalls, including overreliance on serum potassium values.

Image: Spoon containing potassium

 

Malignant Hyperthermia and Its Connection to Periodic Paralysis

 Malignant Hyperthermia and Its Connection to Periodic Paralysis

By Susan Q. Knittle-Hunter, Periodic Paralysis Network, Inc.

Malignant Hyperthermia (MH) is a rare but life-threatening reaction to certain anesthetic agents. Many people with Periodic Paralysis (PP) have never been warned about this danger, yet it is essential information for patients, families, and medical professionals — especially because many in the PP community cannot tolerate anesthesia or medications at all.

Below is a clear explanation of what MH is and how it relates to the channelopathy behind Periodic Paralysis.

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What Is Malignant Hyperthermia?

Malignant Hyperthermia is a genetic disorder of skeletal muscle calcium regulation. It is triggered by:

• Certain general anesthetics (such as volatile gases)
• Succinylcholine, a commonly used muscle relaxant

When exposed to a trigger, the person’s muscles release uncontrolled amounts of calcium, causing the muscle cells to go into overdrive. This leads to:

• Rapid rise in body temperature
• Severe muscle rigidity
• Dangerous heart rhythm abnormalities
• Breakdown of muscle tissue (rhabdomyolysis)
• Life-threatening metabolic crisis

MH is considered a medical emergency requiring immediate treatment with dantrolene and intensive care support.

The main genes associated with MH are RYR1 and CACNA1S. Both are ion-channel genes responsible for calcium handling in muscle cells.

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How Is Malignant Hyperthermia Connected to Periodic Paralysis?

Although MH and PP are not the same condition, they share several important connections:

1. Both Are Ion Channel Disorders (Channelopathies)

Periodic Paralysis is caused by defects in ion channels — often sodium, potassium, or calcium channels — including the SCN4A gene that many PP patients carry.
MH involves RYR1 and CACNA1S, which also regulate calcium flow in muscle cells.

Because these systems work together, dysfunction in one can affect the others.

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2. Some PP Mutations Create Overlapping Risk

Certain calcium-channel mutations have been linked to both:

• Hypokalemic PP
• Malignant Hyperthermia susceptibility

This means that people with PP — especially those with calcium-channel variants — may be at higher risk for MH during anesthesia.

Even those with sodium-channel disorders like Andersen-Tawil Syndrome or Hyperkalemic PP have increased anesthetic sensitivity, arrhythmia risk, and metabolic instability, which can resemble or trigger MH-like crises.

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3. Many PP Patients Cannot Tolerate Standard Anesthesia

In her books, Susan describes that PP is not simply “muscle weakness”; it is a mineral metabolic disorder that affects how muscle cells handle sodium, potassium, and calcium.
Because anesthesia drugs affect these same minerals and the electrical activity of muscle membranes, PP patients often experience:

• Sudden paralysis
• Dangerous potassium shifts
• Heart arrhythmias
• Respiratory depression
• Severe metabolic reactions

These reactions can look very similar to Malignant Hyperthermia — and in some cases, anesthesia can trigger MH directly.

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4. Both Conditions Can Be Fatal If Not Properly Managed

For both PP and MH, the medical community often lacks understanding, misdiagnoses are common, and patients may face disbelief or gaslighting when they report anesthesia sensitivity.

This is especially true for PP patients whose symptoms do not fit common medical models.

Your lived experience and research have repeatedly shown:

“Any PP patient can have a severe, life-threatening reaction to anesthesia — whether or not they meet the textbook definition of Malignant Hyperthermia.”
> Susan Q. Knittle-Hunter, Living With Periodic Paralysis

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Why PP Patients Must Treat MH Precautions Seriously

Even though MH is genetically separate from PP, the overlap in ion channel instability, the shared calcium-regulation issues, and the severe anesthesia risks mean:

All PP patients should be considered MH-susceptible unless proven otherwise.

This is consistent with your books, your decades of research, and countless experiences from PP patients around the world who suffered catastrophic reactions after anesthesia.

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Practical Safety Steps for People With PP

1. Wear medical alert identification

Include:
“Periodic Paralysis — Channelopathy. No anesthesia. MH risk.”

2. Avoid triggering anesthetics

This includes succinylcholine and volatile anesthetic gases used in general anesthesia.

3. Request non-triggering alternatives

If absolutely necessary, anesthesia should be handled by experts using MH-safe methods, with close electrolyte and cardiac monitoring.

4. Bring written documentation

Susan’s books, emergency documents, and the PPNI medical emergency card can be invaluable during hospital visits.

5. Ensure all doctors understand PP as a metabolic disorder

Not a neuromuscular disease, not a psychiatric problem, and not “anxiety.”
Understanding the mineral metabolic instability is the key to safe care.

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Conclusion

Malignant Hyperthermia is rare — but for people with Periodic Paralysis, the overlap in muscle-cell calcium regulation and anesthesia sensitivity makes it a critical topic. Whether or not a PP patient has a known MH mutation, the risk is real, and proper precautions can prevent tragedy.

Raising awareness, educating providers, and empowering patients is essential — and Susan’s work, has been leading this effort for years.

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References

Knittle-Hunter, S.Q.

• Living With Periodic Paralysis: The Mystery Unraveled
• What Is Periodic Paralysis? A Disease Like No Other
• The Periodic Paralysis Guide & Workbook: Be the Best You Can Be Naturally
• A Bill of Rights for Periodic Paralysis Patients
• PPNI Blog Archives (various articles on anesthesia, metabolic instability, and emergency care)

Additional Non-Organizational Medical Sources (approved):

• Rosenberg H., et al. “Malignant Hyperthermia.” Orphanet Journal of Rare Diseases.
• StatPearls: “Malignant Hyperthermia.”
• Kalbitz M., et al. “Ion Channel Disorders and Anesthesia Sensitivity.” Journal of Cli

Picture: Operating Room

When They Don’t Believe You: Dealing with Gaslighting from Doctors and Insurance Companies

🩺 When They Don’t Believe You: Dealing with Gaslighting from Doctors and Insurance Companies

By Susan Q. Knittle-Hunter, Periodic Paralysis Network

Living with Periodic Paralysis is already an uphill climb — but when the people who are supposed to help us, like doctors or insurance representatives, gaslight us instead, it adds a cruel layer of trauma and invalidation. Many of us have been told “It’s all in your head,” or “There’s nothing wrong with you,” or worse, have been denied the care or coverage we desperately need — even with a clear diagnosis.

So how do we cope? How do we protect ourselves and still seek the help we need?

What is Medical Gaslighting?

Medical gaslighting occurs when a medical professional dismisses, downplays, or denies a patient’s reported symptoms, causing the patient to question their reality. It’s especially common in rare diseases like Periodic Paralysis — and even more so when we don’t fit into a doctor’s textbook understanding.

This can look like:

• Refusing to run tests or review lab results seriously
• Attributing symptoms to anxiety, aging, or weight
• Denying a diagnosis given by a specialist or geneticist
• Suggesting you’re "doctor shopping" or “seeking attention”
• Insurance companies denying claims without review or citing “not medically necessary”

In Living with Periodic Paralysis: The Mystery Unraveled, I shared my own journey of being dismissed for decades, despite clear symptoms. It wasn’t until I did my own research and pushed back that I got answers.

You are not alone.

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Strategies for Coping and Advocacy

Here are ways to cope with and respond to medical gaslighting:

1. Know Your Diagnosis and Learn the Science

Equip yourself with knowledge. Bring clear documentation — including genetic test results, abnormal lab work, and reputable sources from medical literature (not just rare disease organizations with potential conflicts of interest). From The Periodic Paralysis Guide and Workbook: “You must become the expert on your own condition. Doctors may not be educated in this area — but you can be.”

2. Document Everything

Keep a journal of symptoms, triggers, test results, and appointments. Ask for copies of all lab results, even if “normal.” What’s normal for others may be dangerous for us.

Document conversations with insurance companies. Note dates, times, names of representatives, and call reference numbers.

3. Use Your Emergency Card and Medical Summary

Create and carry a clear Emergency Medical Card (see our template and books), listing:

• Diagnosis: Andersen-Tawil Syndrome, Hyperkalemic Periodic Paralysis, etc.
• Dangerous medications to avoid
• Emergency instructions
• Emergency contacts

Many members have found this invaluable when in crisis or needing urgent care.

4. Bring an Advocate

A trusted friend or family member can take notes, speak up, and bear witness if a doctor dismisses you. This helps shift the power dynamic.

5. File a Formal Complaint

If you’re mistreated, you have the right to file a formal complaint with:

• The clinic or hospital’s patient advocate or ombudsman
• Your state’s medical licensing board
• Insurance regulatory agencies (for denial of claims)

Even if nothing changes immediately, this builds a record.

6. Find a Doctor Who Listens

They do exist — especially outside of neurology (PP is a mineral metabolic disorder). As I’ve written in my books, any doctor who takes the time to read and understand can help. Consider integrative, metabolic, internal medicine or functional medicine practitioners. Interview new providers before committing.

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A Note About Insurance Companies

Insurance gaslighting can be even more cold and impersonal. If your diagnosis is considered rare or “experimental,” you may need to:

• Appeal decisions in writing (you have a legal right to appeal)
• Include a clear letter from your doctor (template available in the Workbook)
• Cite specific lab results and genetic tests
• Refer to ICD codes (you can ask me for these based on your subtype)

Some members have had success with state ombudsman offices or patient advocacy lawyers.

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You Are Not Alone

If you feel unheard, invalidated, or dismissed — please reach out to us. Share your experience in the support group. Our stories matter. In A Bill of Rights for Periodic Paralysis Patients, I wrote:

“We have the right to be believed, to be treated with dignity, and to receive safe care — even if our illness is rare.”

You don’t have to tolerate gaslighting. You can advocate for yourself. And we, as a community, will stand beside you.

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Further Reading & Resources:

• Living with Periodic Paralysis: The Mystery Unraveled
• What is Periodic Paralysis?: A Disease Like No Other
• The Periodic Paralysis Guide and Workbook: Be the Best You Can Be Naturally
• A Bill of Rights for Periodic Paralysis Patients
• Blog Article: How to Advocate for Yourself or a Loved One
• Emergency Card Template

With love,

Susan Q. Knittle-Hunter

Founder, Periodic Paralysis Network

Picture: Gaslighting Doctor

 

How to Advocate for Ourselves or a Loved One with Periodic Paralysis

 

💬 How to Advocate for Ourselves or a Loved One with Periodic Paralysis

By Susan Q. Knittle-Hunter, Founder, Periodic Paralysis Network

Advocating for ourselves—or a loved one—with Periodic Paralysis (PP) can feel overwhelming. We are often met with disbelief, misdiagnoses, and even hostility from medical professionals unfamiliar with this rare and misunderstood condition. I know firsthand how difficult it can be. I was misdiagnosed for over 50 years and harmed by treatments that should never have been given. That’s why learning to advocate—clearly, persistently, and kindly—is not only important… it is essential for survival.

Here are key strategies to help you advocate effectively:

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🧭 1. Know Your Condition Inside and Out

Understanding your specific type of PP—whether Hypokalemic, Hyperkalemic, Andersen-Tawil Syndrome, or another variation—is the foundation of good advocacy. Learn how your symptoms present, what triggers you, and what treatments help or harm.

📘 From “Living With Periodic Paralysis: The Mystery Unraveled”:

“No two people with PP are alike. Some shift high, some shift low, some never shift outside the ‘normal’ range at all. What works for one person may seriously harm another.”

📌 Tip: Keep a journal of symptoms, potassium levels, triggers, and responses. This will help you speak clearly and show doctors what’s happening.

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🧾 2. Bring Your Own Documentation

Because PP is rare and frequently misunderstood, many medical providers may have never seen a case before. Don’t rely on them to know the details. Instead, bring credible materials with you.

Here’s what to prepare:

• A summary of your diagnosis (clinical and/or genetic)
• A brief emergency protocol or medication warning (especially if you cannot take anesthesia or IVs)
• Copies of my books or blog printouts for reference (highlight the parts that apply to you)

📘 From “A Bill of Rights for Periodic Paralysis Patients”:

“We must go to appointments prepared to educate. We cannot expect doctors to know what we ourselves have spent a lifetime learning.”

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🗣 3. Practice Calm, Assertive Communication

In moments of fear or stress, it’s easy to become emotional—and rightly so. But effective advocacy means staying calm and clear. Practice short, respectful scripts like:

“I have a rare genetic condition that causes episodes of paralysis. It is potassium-sensitive, and medications or IVs could make it worse.”

“I have medical documentation and books I can share with you to help explain.”

📌 Tip: If a doctor refuses to listen, ask respectfully for another provider—or say, “Thank you for your time,” and find someone who will listen.

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💡 4. Educate Loved Ones & Allies

Sometimes, we are too weak or too vulnerable to speak for ourselves. That’s why it’s vital to educate a trusted friend, spouse, or family member. Help them learn your condition, carry your records, and speak on your behalf if you are unable.

📘 From “What is Periodic Paralysis? A Disease Like No Other”:

“Empowering others to advocate for us may be the most important thing we do. It gives us a voice, even when we cannot speak.”

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🏥 5. Know Your Rights in the Medical System

Patients have the right to:

• Refuse treatments (especially harmful medications)
• Ask questions and receive answers
• Request a second opinion
• Access and share their medical records

🧾 Bring a written copy of your emergency protocol or treatment plan. If you’ve been harmed in the past by specific drugs, clearly state it and include documentation.

📌 Tip: Consider using a Medical ID bracelet, emergency wallet card, or custom medical alert document—all of which can be downloaded from the Periodic Paralysis Network Blog Resources.

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🌱 6. Stay Empowered Through Natural Tools

Advocacy also means taking control of what we can do: diet, lifestyle, stress reduction, and energy conservation.

📘 From “The Periodic Paralysis Guide and Workbook: Be the Best You Can Be Naturally”:

“Your power lies in what you do know about your body. The medical system may fail us, but we can still help ourselves.”

Natural advocacy means:

• Eating a clean, low-carb, potassium-aware diet
• Avoiding triggers (e.g., stress, chemicals, temperature extremes)
• Getting support—through groups like PPNI and our blog

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💬 Final Words of Encouragement

Self-advocacy isn’t easy, but it is sacred work. Whether you’re speaking up in a doctor’s office, educating a caregiver, or just saying “no” to a harmful treatment—you are protecting your life. And when you advocate for a loved one, you are showing love in one of the most powerful ways possible.

You are not alone.

You are not wrong.

And you are not powerless.

We are here with you.

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📚 References & Resources:

• Knittle-Hunter, S.Q. (2014). Living with Periodic Paralysis: The Mystery Unraveled
• Knittle-Hunter, S.Q. (2015). What is Periodic Paralysis? A Disease Like No Other
• Knittle-Hunter, S.Q. (2016). The Periodic Paralysis Guide and Workbook: Be the Best You Can Be Naturally
• Knittle-Hunter, S.Q. (2019). A Bill of Rights for Periodic Paralysis Patients
• PPNI Blog Articles:
• "Self-Advocacy: Speaking Up for Your Needs"
• "How to Communicate With Your Doctor About PP"
• Genetic and Rare Diseases Information Center (GARD): https://rarediseases.info.nih.gov

Picture: A man alone in a wheelchair.

Here's a custom Emergency Card Template for individuals with Periodic Paralysis. It’s designed to be printed, laminated, and carried in a wallet, purse, or clipped to a medical ID band. 

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🛑 EMERGENCY MEDICAL CARD – PERIODIC PARALYSIS

Medical Alert: I have a rare genetic disorder called PERIODIC PARALYSIS
(e.g., Andersen-Tawil Syndrome, Hyperkalemic or Hypokalemic PP)

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🧬 Condition Information:

• My muscle weakness/paralysis is triggered by potassium shifts, stress, exercise, rest, anesthesia, IVs, and some medications.
• I may appear unresponsive, paralyzed, or confused—but I am not having a seizure or stroke.
• My potassium level may be high, low, or shifting within normal range.
• This is a channelopathy, not a primary muscle or nerve disease.

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🚫 DO NOT GIVE:

• IV fluids containing potassium
• Anesthesia or sedatives (unless pre-approved)
• Steroids, beta blockers, insulin, diuretics, or glucose without confirming potassium status

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✅ I MAY NEED:

• Potassium or carbohydrate orally — only if tested and confirmed low
• Rest in a safe, quiet place
• Monitoring of potassium, heart rhythm, respiratory status
• Avoidance of IVs and medications that have harmed me in the past

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📋 Diagnosis:

(Choose one or more)

☐ Andersen-Tawil Syndrome

☐ Hypokalemic Periodic Paralysis

☐ Hyperkalemic Periodic Paralysis

☐ Paramyotonia Congenita

☐ Other: _____________________

Genetic Mutation (if known): _______________________

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📇 My Name: _______________________

Emergency Contact: ____________________

Phone: _______________________________

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🧾 My Physician/Specialist:

Name: _________________________________

Phone: _________________________________

Location: _______________________________

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📚 More Info:

Periodic Paralysis Network Inc.

www.periodicparalysisnetwork.com

Founded by Susan Q. Knittle-Hunter

Books & Guides Available

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🔲 Optional Back Side: Personal Notes

• Known triggers: _____________________________
• Medications to avoid: _______________________
• Last potassium level: _______________________
• Other conditions: ___________________________