In November of 2017, I suffered two unrelated minor injuries to my head. The first injury happened when I was unloading the dishwasher. After putting the plates away directly above the dishwasher, I failed to close the cabinet door, and bent over to get something else out of the dishwasher. When I rose, I banged the front top left of my head into the corner of the cabinet. It was extremely painful, but there was no blood, so I wasn't too worried about it. A few days later, I was laying on my loveseat with my Kindle Fire over head, it slipped out of my hand and hit me slightly above my right temple.
When my headache didn't go away, and it was accompanied by facial pain from the left side to the right side around the eyes. I went to the doctor, and was referred to a neurologist. At about the same time, I was having what appeared to be gallbladder issues, and I was going in for tests for that as well. It is difficult to describe what I am feeling to specific doctors when they are not interested in all of my symptoms. All I knew is I had a bad headache that didn't go away, along with pain across my face, and severe pain between my abdomen and ribs on the right two to three hours after I ate.
I was doing so poorly, I took a medical leave of absence from work. I finally had surgery on 18 February 2018, but the headache and facial pain continued. By the summer of 2018, I was still in much pain, and dealing with additional stress. My medical leave benefit was delayed by seven weeks, and I was forced to sell most of my things, so I wouldn't get evicted. I also started having symptoms similar to mold poisoning. My speech was slurred, I couldn't remember anything (worse than normal), and I got words confused (more than normal), I knew something was terribly wrong, but all I could do is report it to the neurologist. I was referred to a behavioral health center for educational testing.
Perhaps in another post I will discuss that ordeal and those results, but for now back to the headaches. I went back to work in August 2018 still in pain. I worked the best that I could, but by the beginning of December it was unbearable, so I applied for another leave of absence, asked a co-worker if she could take over my contacts, and started doing more research on mold poisoning. They had tested my apartment during the summer, but having continual symptoms, I asked them to return to test again. Prior to my headaches, a tree had fell on my apartment two different times, and a lot of water came in to my office, living room, and attic area. So mold wasn't out of the question!
The mold tests came back normal, and I wasn't any better, in fact, I was getting worse mentally. I learned that my father had passed away, so I said goodbye to closure, I started looking for a therapist to deal with my emotions, but appointments were months out. I even had one therapist tell me I needed to check into the hospital, get put on medication, and then she will see me. My anxiety was through the roof, and intrusive thoughts were telling me this life wasn't worth living. I knew it was, and I was determined to win this battle I was fighting. I kept calling, until I found someone to see me the next day, just in time. It was the behavioral health center I had been to earlier for testing. My doctor was a Godsend and I will forever be grateful for her saving my life. However, I was still having this headache and facial pain. I decided to go to an Ear, Nose & Throat (ENT) doctor because by now my ears started ringing (tinnitus). That visit turned up nothing—everything is "in range" —to me in range means nothing, if I was at the high end of something and now I am on the low end, how is that not a problem? An appointment to Mayo Clinic was set for May 2019. The neurologist and psychologist were having to send nearly weekly reports to my employer which for me was very stressful asking them to do that and providing them the forms. It was beginning to feel very unnecessary and out of the ordinary. Human Resources (HR) notified me at the beginning of April that my insurance would be discontinued 30 April.
I was finally going to be able to see a specialist, and they are telling me I would no longer have insurance just prior to my appointment. I was upset, and the flippant suggestions from the HR agent did not sit well with me. Consequently, my work sent an officer to do a wellness check on me. Despite not being suicidal, what happened next is for another post. It turned out to be a valuable reminder to "know your audience." My representative for my medical leave left me a message that there was a mistake, and not to worry about my insurance, but at the time I didn't feel reassured. I was so tired of taking medicine that was having no affect on my pain, so I stopped taking it and didn't make any further appointments with the local neurologist when I learned she personally delayed my referral to Mayo Clinic. To my surprise, the symptoms I was experiencing similar to mold poisoning were caused by the medication the neurologist put me on—even though I was telling her on each visit my symptoms, she brushed me off. I was thankful the neurology department accepted me at Mayo Clinic—the headache specialist is world renowned in his field. I was filled with hope!
My insurance wasn't terminated as promised and I was able to keep my appointment at Mayo Clinic. He did another MRI and started me on some different medication. In addition, my mental health was improving after I was prescribed medical marijuana by my primary care physician—all of my doctors thought it would help me a lot, which it has helped. I continued to see the specialist throughout 2019, and he diagnosed me with New Daily Persistent Headache (NDPH) and Empty Sella Syndrome (ESS). It takes time when trying new medicine, slowly building to the correct dose. There was only a slight decrease in pain, and with failure, it takes time to come off the medication as well.
By February 2020, my psychologist agreed I was doing well and I could return anytime I needed. I also decided to stop seeing the specialist at Mayo Clinic. It was a two hour drive each way, the medication wasn't helping, and I was going to consider doing the Botox injections on the 2017 injury sites, but Covid-19 came before I made a final decision. I made a choice not to return to Mayo Clinic after the pandemic settled, even though my experience there was top-tier! I still live with the headache, facial pain, and tinnitus, but the THC/CBD does help when I am able to purchase it—it is pricy, but for me, it is well worth the cost.
Although reading this post may cause you to have a headache, I truly hope this information will be valuable to someone that has been suffering without finding relief.
New Daily Persistent Headache
New Daily Persistent Headache (NDPH) is a unique type of chronic headache that begins suddenly and remains persistent from the very first day of onset. It is a challenging condition because the exact cause is often unknown, and it tends to be resistant to many traditional headache treatments.
What is NDPH?
Definition: NDPH is characterized by a headache that starts abruptly, with the affected person remembering the exact date it began. Unlike episodic headaches, it does not go away and persists daily.
Duration: Lasts for over 3 months, but many cases persist for years.
Symptoms
Headache Characteristics:
Can feel like a tension-type headache (mild to moderate, with pressure-like pain) or a migraine (throbbing, with nausea, light/sound sensitivity).
Bilateral (on both sides of the head) or unilateral (on one side).
Other Symptoms:
Often accompanied by fatigue, insomnia, or difficulty concentrating due to the constant nature of the pain.
Possible Causes and Triggers
The exact cause of NDPH is unknown, but it is often associated with:
Infections: Viral illnesses or respiratory infections may precede the onset.
Stressful Events: Physical or emotional stress, including surgery or trauma.
Autoimmune or Inflammatory Conditions: Some cases may involve underlying conditions affecting blood vessels or the immune system.
Other Triggers: Some patients report the onset following minor injuries or significant life changes.
Diagnosis
NDPH is diagnosed based on clinical history and exclusion of other causes. Common diagnostic steps include:
Medical History: Identifying when the headache began and its daily persistence.
Imaging Tests: MRI or CT scans may rule out structural brain issues.
Blood Tests: To identify potential infections or autoimmune conditions.
Treatment
Treatment can be complex and varies from person to person. Options include:
Medications:
Preventive medications like antidepressants, anticonvulsants, or beta-blockers.
Acute treatments for symptom relief, such as NSAIDs or triptans (though these are often less effective in NDPH).
Lifestyle Modifications:
Stress management techniques, including mindfulness, yoga, or therapy.
Adequate sleep, hydration, and regular exercise.
Other Therapies:
Nerve blocks or botulinum toxin (Botox) injections in some cases.
Behavioral therapy for managing chronic pain.
Experimental Treatments:
Intravenous therapies or neuromodulation devices (like transcranial magnetic stimulation) for severe cases.
Living with NDPH
NDPH can significantly impact quality of life due to its persistent nature. Support groups, counseling, and working closely with headache specialists are vital for managing the condition effectively.
Empty Sella Syndrome
Empty Sella Syndrome (ESS) is a condition involving the sella turcica, a small, bony structure in the skull that houses the pituitary gland. The pituitary gland plays a critical role in regulating hormones that control various body functions. In ESS, the sella turcica appears empty on imaging scans because the pituitary gland has shrunk or been compressed.
Types of Empty Sella Syndrome
Primary ESS:
Often caused by increased pressure in the brain or a defect in the diaphragm sella (a thin membrane that normally holds the pituitary gland in place). More common in middle-aged, overweight women and may not have noticeable symptoms.
Secondary ESS:
Results from damage to the pituitary gland due to surgery, radiation, tumors, or injury.
Associated with a loss of some pituitary function.
Symptoms
Some people with ESS experience no symptoms, especially in primary ESS. However, symptoms may include:
Hormonal Imbalances: Issues such as irregular periods, low libido, or infertility.
Headaches: Frequent or severe headaches are a common complaint.
Vision Problems: Compression of the optic nerve can lead to blurred vision or visual field loss.
Fatigue and Weakness: Caused by hormone deficiencies.
Other Symptoms: Dizziness, nausea, or symptoms related to other endocrine disorders.
Causes and Risk Factors
Defects in the diaphragm sella.
Obesity and high blood pressure, which may increase cerebrospinal fluid (CSF) pressure.
History of pituitary surgery, radiation, or trauma.
Diagnosis
ESS is typically diagnosed through imaging studies like MRI or CT scans. Blood tests may also be done to evaluate pituitary hormone levels.
Treatment
Treatment depends on the presence of symptoms or hormonal deficiencies:
No Symptoms: Often no treatment is needed if hormone levels are normal.
Hormonal Imbalances: Hormone replacement therapy is commonly prescribed.
Severe Symptoms: Surgery might be necessary in rare cases, particularly for vision problems or to repair a CSF leak.
Living with ESS
For many people, ESS is a manageable condition, especially if it does not cause significant symptoms. Regular monitoring of hormone levels and overall health is essential.
Conclusion
If you suffer from headaches, maybe this post can help you! I used to suffer from severe migraines in my thirties, and by my mid forties, I narrowed my trigger down to eating onions. It really shouldn't have taken that long, but I can only do so much and I was dealing with a lot back then, too. It is also important to drink plenty of water! The recommended amount is around 3 - 4 liters with a lot of different variables such as age, gender, activity level and more. Fluid intake helps in a lot of ways—another post idea!
Headaches can really be debilitating, and can be a symptom of something serious. It is best to seek medical advice if your headaches are affecting your daily life. The cause of my persistent headache, facial pain, and tinnitus is still unknown. Could it stem from when I hit my head back in 2017 or symptoms related to ESS or some other undiagnosed disease. On a scale of zero - ten, many times the pain is minimal about a two to four and other times the pain can be moderate around a six or seven. Mostly, I overlook it, and it is just something that's there—I have now lived with this pain seven years. I wake with it, I live my daily life with it, and I fall asleep with it. I live with a lot of pain, besides this headache, that nobody sees—God knows I'm not complaining.
Romans 8:18 "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us."
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