Conquering Cluster Headaches

According to the American Migraine Foundation, cluster headaches are said to be, “the most painful of all headaches. They have been described as “suicide headaches.”

What sets these “headaches” apart from a typical migraine is the specific attack on the trigeminal nerve (which is cranial nerve five). This nerve controls sensations of the face. Due to this, the pain associated with cluster headache often localizes to the face particularly around and behind the eye. The inflammation or irritation of this nerve also causes an autonomic response in the form of symptoms like red, swollen and/or teary eyes, runny or stuffy nose, sweating or flushing of the face, drooping of the eyelid, or a sense of fullness in the ear.

I have had migraines all my life, but I didn’t start getting cluster headaches until my mid-twenties. I was amazed when I read that they were called, “Suicide Headaches.” This is a completely accurate description. I am not generally a depressed person. I do not suffer from any mental illness or anxiety but when I get cluster headaches; that is the only time I am ever suicidal.

The pain and other symptoms are so intense, my brain’s only thought is ending the agony. I have a theory that cranial nerve five is somehow associated with mood stabilizing cognitive function and therefore when is irritated, throws off emotional homeostasis. I am not a neurologist so that is just my theory. But, what I can tell you for certain is that cluster headaches are one of the worst experiences that a person can face. With my kidney disease (medullary sponge kidney) I have constant kidney stones. These stones are unbearably painful at times, but I’d still rather have a kidney stone than a cluster headache.

My cluster headaches require a completely different strategy to battle than my normal migraines. Below is a list of things I have found to help me endure the agony until the cluster headache passes.

– Utilizing both hot and cold temperatures. I know I look insane when I am treating my cluster headaches. I typically have something cool over my eyes and I lay the back of my head on a heating pad. I alternate this to try to calm the irritated cranial nerve and soothe the swelling accompanied with clusters. (Note: DO NOT fall asleep on a heating pad. When using it on your head, keep it on the lowest heat setting and alert someone that you are lying down on a heating pad in case you fall asleep).

– My local dollar store sells small, portable ice packs. I have an entire shelf in my freezer dedicated to these little life-savers. If you battle cluster headaches, I highly recommend getting a good heating pad and some ice packs.

– I have found that taking allergy medicine helps. If I take it in addition to my prescribed medication, it can alleviate the other symptoms associated with an irritated cranial nerve (Note: Do not start or stop any medication without first contacting your healthcare provider).

– Using a nasal rinse such as saline spray helps, too. It aids with the pressure and stuffiness and using peroxide in the affected ear helps relieve some of the pressure. (I pour a small amount in my ear and let it soak for a minute and then wipe it out with a tissue)

– Taking a hot bath while putting ice packs on my neck and a cool clothe over my eyes helps dissipate the intense throbbing. My trick is I pour some water over a washcloth and put it in the freezer for five minutes (long enough to get it cool, but not to freeze it) then I get into the hot bath and turn the overhead lights off and use a tiny nightlight instead.

– A healing resting area is an essential to battling cluster headaches. Using something such as a box fan to create white noise and covering your windows with a black out curtains (or you could even use an extra blanket) and having a cool temperature will help you be able to rest and get rid of the cluster headache.

– When I get cluster headaches, it is typically because my metabolic state is off in some way. Drinks like pedialyte or electrolyte stabilizers such as sodium chloride tablets can help your body fight the cluster headache. (Do not start or stop any treatment without first contacting your healthcare provider)

– Maintaining a regular schedule. Lack of ANYTHING triggers these horrible headaches. If I don’t get enough sleep or hydration, if I get too hungry- BAM there’s a cluster headache. Be sure you are practicing adequate self-care.

– If you do ever get suicidal with your cluster headaches, please reach out to someone.Also, it helps me to leave little notes for myself when I get these. These notes remind me of little good things I want experience again. They remind me that cluster headaches are temporary and I have to fight for my better days. I recommend everyone have a few post it notes displayed around your home written with things that will help you battle the hard moments.

– Don’t be afraid to say NO. If you have a cluster headache, DO NOT force yourself to push through something you don’t want to. You are allowed to say NO. Cluster headaches are one of the most painful things a human can face, and if someone else can’t understand that then why are you pushing yourself to please them anyhow?

If you battle cluster headaches, let me just say that I am so sorry. Know that your pain is validated and understood. Remember to fight through the bad days because the good ones are more than worth it!


To read more from Winslow please visit her website.

Understanding Medullary Sponge Kidney (Cacchi-Ricci Disease)

Understanding Medullary Sponge Kidney (Cacchi-Ricci Disease)


Cacchi-Ricci Disease is primarily known as Medullary Sponge Kidney (MSK). It is a congenital disorder of the kidneys.  Though it is present from birth, symptoms typically do not occur until adolescence. MSK occurs when the tubules in the kidneys do not properly form in the womb. This results in cystic dilatations of the collecting tubules in one or both kidneys. On imaging scans, this shows up as a “sponge like” appearance. 70% of cases are bilateral, which means MSK occurs in both kidneys.

Patients with MSK are at increased risk for kidney stones and urinary tract infection. They typically pass twice as many stones per year as do other stone formers. Over 55% of MSK patients report chronic kidney pain, renal colic, frequent stones and recurrent infections.

MSK was previously believed not to be hereditary but there is more evidence coming forth that may indicate otherwise. There is conflicting evidence as to whether this condition is of genetic origin.

This kidney disease is unique because patients are, for the most part told they are not candidates for transplant. Though MSK can cause sub-par kidney function, only 10% of patients suffer renal failure and require dialysis. This disease, however is listed as one of the top painful conditions according to the American Chronic Pain Association. Sufferers of this disease complain of symptoms such as: Constant flank pain, renal and bladder spasms, pain associated with stone passage, and frequent urination.

Though not present in all cases, a common marker for this disease is the formation of “Kidney Gravel.” These are small, sand-like stones that some MSK patients pass every single day of their lives. These grains cause frequent irritation in the urinary tract; which in turn causes pain, inflammation and leads to infection. This “sand paper” effect can also cause issues such as bloody urine, constant pain and interstitial cystitis in the bladder.


The standard diagnostic test most urologists use is called an intravenous pyelogram (IVP) An IVP is an x-ray examination of the kidneys, ureters and urinary bladder that uses iodinated contrast material injected into veins. An x-ray (radiograph) is a noninvasive test that helps physicians diagnose and treat medical conditions.

If severe enough, MSK can also be viewed on ultrasound and MRI scans.

Additional Testing-

Blood tests for calcium, phosphorus, uric acid, electrolyte levels, blood urea nitrogen (BUN) and creatinine levels to assess kidney function.

Urinalysis to check for crystals, bacteria, blood, and white cells.

24 Hour Litho-Link Urine Test.

There are also imaging tests that can determine if you have lodged or embedded stones.

Additional testing may include: Abdominal X-rays, intravenous pyelogram (IVP), renal ultrasound, MRI or CT scan.


Being a rare disease, the treatment for MSK can vary. Diagnostic tests such as urine PH and stone analysis can help sufferers discover what type of stones their body makes and why. Over 50% of MSK patients create calcium stones.  Getting a urine PH test is essential to care with MSK because certain stones form in alkaline urine while others form in acidic urine.

Dietary interventions are also essential in the management of MSK.  Everyone is different and keeping a  Health Log Journal  will help you discover what helps or hurts your symptoms.

Some patients have found great benefit from avoiding chemicals such as citric acid. Patients with stones that form in alkaline urine have found relief from acidifying their urine to decrease stone formation.  Patients who created stones in an acidic urine have found benefit from eliminating acidic foods such as tomato sauce to manage their MSK.

Drinking adequate amounts of water is also key to managing MSK. This is more than hydration, some patients struggle to drink water with additives such as sodium bicarbonate. Be vigilant of what goes into your body. Your kidneys have to filter everything, be sure you are giving them the easiest job possible when they are already struggling to function.

Pain management is typically a necessary intervention in the treatment of MSK. Kidney stones are severely painful and most patients need some sort of pain relief.  Medications such as anti-spasmodics, urinary analgesics and narcotics can be prescribed to manage the agony of MSK. Pelvic floor therapy is also recommended.

With MSK, the tubules in the kidney are not fully formed so they struggle to complete the tasks the body needs.  No two people are the same and you should discuss all options with your urologist. Most patients require a combination of dietary changes, medications and physical therapy to manage MSK.

If you are suffering with Medullary Sponge Kidney (Cacchi-Ricci Disease) please know you are not alone.

For more information and resources, consider reading the book Chronically Stoned: Guide to winning the battle against kidney stones & urinary tract infections


Rare Disease Spotlight- Janelle’s Battle with Mitochondrial Disease

Mitochondria are the energy makers in our body. We all learned in high school that the mitochondria are the “power houses’ of the cell. But sometimes, genetic mutations occur in these “power houses” and cause chronic disorders that occur when the mitochondria fails to produce enough energy for the body to work appropriately.

Mitochondrial disease can affect the cells of the brain, nerves, muscles, kidneys, heart, liver, eyes, ears or pancreas. Mitochondrial diseases include autism, Parkinson’s disease, Alzheimer’s disease, muscular dystrophy, Lou Gehrig’s disease, diabetes, and cancer. One in 5,000 individuals has a mitochondrial disease. Each year, about 1,000 to 4,000 children in the United States are born with a mitochondrial disease.   – (Source Cleveland Clinic)

This Janelle’s story.

She has bravely fought mitochondrial disease for 27 years.

Janelle was born with genetic mitochondrial disease. She spent a great deal of her young life in the hospital. Mitochondrial disease can impact people in various, different ways. Janelle’s form of this disease vastly impacts her muscles and her gastric function. She was unable to eat solid food until the age of three. Since her body does not function properly, she has to rely on a broviac tube and port to give her life sustaining nutrients and medication. She struggles with neuropathy, cyclic vomiting, fatigue and malabsorption issues. Her gastric function is so compromised that she frequently becomes dehydrated and malnourished. The veins in her body literally collapse from the lack of necessary nutrients and hydration. The only solid foods she can eat are potatoes. Janelle’s diet is mainly comprised of chicken broth.

Janelle is sharing her story because she wants people to know that Mitochondrial disease may be invisible but it is very real.  We have lost more children from mitochondrial disease than we have to childhood cancer. Rare disease awareness is necessary.

Symptoms of mitochondrial disease-

(Source- Cleveland Clinic)

  • Poor growth
  • Muscle weakness, muscle pain, low muscle tone, exercise intolerance
  • Vision and/or hearing problems
  • Learning disabilities, delays in development, mental retardation
  • Autism, autism-like features
  • Heart, liver or kidney diseases
  • Gastrointestinal disorders, swallowing difficulties, diarrhea or constipation, unexplained vomiting, cramping, reflux
  • Diabetes
  • Increased risk of infection
  • Neurological problems, seizures, migraines, strokes
  • Movement disorders
  • Thyroid problems
  • Respiratory problems
  • Lactic acidosis
  • Dementia

(These are not all inclusive, every person may not have every symptom. Mitochondrial disease has many different types, forms and origins)

Janelle may fight a difficult battle against this disease, but she is still determined to enjoy her life. She finds happiness by spending time with her family and especially enjoys playing with her nieces and nephews. She also enjoys cheerleading and tries to stay as active as her health allows. She has many friends and the children’s book, The Shivering Sunbeam was dedicated her. She is passionate about helping others realize that even though they may be battling a tough disease, they can still be happy.


I am going to stay positive even though it’s been very rough and difficult.  I have to fight for my life. I am not going to give up on hope or faith.    Janelle says.



If you or someone you know is battling a rare disease, please know you are not alone. The UnChargeables are here to support you. We will never stop advocating for every chronic illness patient, even the rare ones!

Rare disease awareness is necessary because you never know who may be battling an unknown health issue. Rare doesn’t mean impossible.

You are not alone! Keep fighting.


Would you like to share your rare disease story? Contact us!



Rare Disease Spotlight Series: Chiari Malformation

As a new feature, we’re going to start a regular blog highlighting some of the rarer diseases in our community. For our first post, we’ll be talking about Chiari malformation.  By Monica Roberts

Chiari malformation is a condition in which the brain tissue (specifically the cerebellum) extends past the skull into the spinal area, resulting in compression of both the brain and the spinal cord. This also disrupts the regular flow of cerebrospinal fluid (CSF).


  Types of Chiari Malformation

Chiari malformation can be classified into three types, the latter two being congenital, or present at birth.

Type I develops as the skull and brain are growing, therefore symptoms may not occur until early adulthood.

Type II (sometimes called Arnold-Chiari) is usually noted by ultrasound during pregnancy, though it can be diagnosed after birth or in early infancy as well. This type is also closely related to Spina Bifida.

Type III is a rarer pediatric form, and is considered to be the most severe.


Spotlight Chiari Malformation



It’s possible to have a Chiari malformation without symptoms and often the condition is only detected when tests are performed for unrelated issues. In addition, since Chiari affects the nervous system, symptoms are widely varied across a range of possibilities.

There are some common symptoms, most notably severe headaches that can occur after sudden coughing, sneezing, or straining. Other symptoms connected to Chiari are neck pain, problems with balance and/or dizziness, vision and speech problems, and difficulty swallowing. Less often, people with Chiari experience more severe spinal-related symptoms such as scoliosis or have difficulties breathing.

Diagnosis and Treatment

The most common way to diagnose Chiari is through imaging, such as MRI and CT, or ultrasound in pediatric cases. Recently, however, with the definitions of Chiari malformations shifting, doctors are using a combination approach that includes reported symptoms and a neurological exam to aid in diagnosis.

Treatment for Chiari depends on the severity of the malformation. If there are no symptoms present, doctors typically recommend monitoring through regular exams. If symptoms are interfering with quality of life, worsening, or impairing the nervous system, doctors may recommend surgery. The most common surgery for Chiari is decompression surgery, but alternatives like shunting to channel the flow of CSF exist as well.


Spotlight Chiari Awareness


How do I know if I have Chiari? Is it genetic?

Though studies are ongoing, Chiari isn’t currently known to be solidly linked to genetics, which means there is no way to identify if the condition may be passed on within families. The current lack of study information also means there is no accurate way to estimate what percent of the population has a Chiari malformation.

*If you believe you may be experiencing the symptoms of Chiari, or any other neurological symptoms, we strongly recommend you visit your doctor.

For more information on this rare disease, visit

For more support:

If you’ve already been diagnosed with Chiari and are looking for more support, you are welcome to join the hundreds of other Chargies (our alternative term for Spoonies derived from the Battery Analogy) on our Facebook support group, The Unchargeables! We’re a community open to all chronic illness warriors including those with rare diseases and those who have yet to be diagnosed.

Also, check out our Chiari Malformation section in the shop for great gear to help you represent and raise awareness.