Many Lyme/MSIDS patients suffer with neuralgia, a twenty dollar word for pain due to irritated or damaged nerves. The following articles do a great job explaining it. I was elated to see that the first article written this month attributes Lyme disease to causing it, along with other infections. My guess is Bartonella, Babesia, Mycoplasma, Brucella, and possibly other tick-borne illnesses, including viruses, could all play a part. Because the CDC/NIH/IDSA do not accept the fact this is often times a polymicrobial illness (infected with far more than just Lyme), and many of the coinfections are not reportable, authorities have absolutely no idea about prevalence.
My guess is there are many diagnosed with neuralgia that have an undiagnosed Lyme/MSIDS infection.
What to know about neuralgia
- infections, such as shingles, Lyme disease, or HIV
- pressure on nerves from bones, blood vessels, or tumors
- other medical conditions, such as kidney disease or diabetes
Types of neuralgia
Healthcare professionals divide neuralgia into categories depending on the areas of the body it affects. The following are some common types of neuralgia:
Trigeminal neuralgia (TN) involves the trigeminal nerve in the head. It has three branches that send signals from the brain to the face, mouth, teeth, and nose.
TN falls into two subdivisions: type 1 and type 2.
Type 1 TN causes a painful burning or electric shock-like sensation in parts of the face. People with type 1 TN experience irregular episodes that come on suddenly.
The duration of these episodes varies among people but can last up to 2 minutes, according to the National Institute of Neurological Disorders and Stroke.
Type 2 TN produces a constant, dull aching sensation in the face.
The exact cause of TN remains unclear. However, pressure from an enlarged blood vessel can irritate or even damage the trigeminal nerve.
Postherpetic neuralgia (PHN) is a painful condition that affects the nerves in the skin.
According to the Centers for Disease Control and Prevention (CDC), PHN is the most common complication of shingles, affecting about 10–13% of people who develop it.
Shingles is a viral infection that causes blisters and a painful skin rash. The varicella-zoster virus, which causes chickenpox, remains dormant in the nervous system and reactivates later in life, causing shingles.
When the virus reactivates, it can cause inflammation in the nerve fibers. This inflammation can lead to permanent nerve damage that causes pain, even after the infection subsides.
This form of neuralgia affects the occipital nerves, which originate in the neck and send signals to the back of the head.
Occipital neuralgia causes a throbbing or shooting pain that starts near the base of the skull and radiates along the scalp. Occipital neuralgia pain can flow to the back of the eyes.
Occipital neuralgia has numerous potential causes, including:
- sudden head movements
- tense neck muscles
- lesions or tumors in the neck
- inflamed blood vessels
- neck injuries
Peripheral neuralgia, or peripheral neuropathy, refers to pain that occurs due to nerve damage in the peripheral nervous system. This includes all nerve fibers outside of the brain and spinal cord.
Peripheral neuralgia can affect a single nerve or entire nerve groups.
Sustaining damage to the peripheral nervous system can affect nerves that control muscle movements, transmit sensory information, and regulate internal organs.
Peripheral neuralgia can cause pain or numbnessin the hands, feet, arms, and legs. Other symptoms may include:
- involuntary muscle twitching or cramping
- loss of coordination
- difficulty performing complex motor tasks, such as buttoning a shirt or tying shoelaces
- hypersensitivity to touch or temperature
- excess sweating
- gastrointestinal problems
- difficulty eating or swallowing
- difficulty speaking
Intercostal neuralgia affects the nerves that sit just below the ribs. Doctors call the muscles in this area the intercostal muscles.
Several potential factors may contribute to intercostal neuralgia, such as:
- injuries or surgical procedures that involve the chest
- pressure on the nerves
- shingles or other viral infections
Intercostal neuralgia causes a sharp, burning pain that affects the chest wall, upper abdomen, and upper back. Certain physical movements, such as breathing, coughing, or laughing, can worsen the pain.
Additional symptoms may include:
- tightness or pressure that wraps around the chest
- tingling or numbness in the upper chest or upper back
- muscle twitching
- loss of appetite
Diabetic neuropathy is the most common complication of diabetes. Because diabetes affects so many people, rates of peripheral neuropathy are now beginning to rise.
Symptoms include loss of balance and numbness, tingling, and pain. The best way to prevent diabetic neuropathy is to bring blood sugar levels within a suitable range.
In general, neuralgia causes intense and distinct symptoms, including:
- sudden episodes of extreme shooting or stabbing pain that follows the path of a damaged or irritated nerve
- persistent aching or burning pain
- tingling or numbness
- muscle weakness
- loss of muscle mass, or atrophy
- involuntary muscle twitching or cramping
Treatment options for neuralgia vary depending on the type and severity of the condition.
Topical ointments, local nerve block, and steroid injections may offer temporary pain relief for mild neuralgia.
Treating severe neuralgia pain may require prescription medications, surgical procedures, or both.
- anticonvulsants, such as carbamazepine, topiramate, and lamotrigine
- antidepressants, such as amitriptyline
- muscle relaxants, such as baclofen
- membrane-stabilizing medications, such as gabapentin
Some surgical procedures can help relieve neuralgia pain when the condition does not respond to medication.
Examples of surgical procedures that can help treat neuralgia include:
- Microvascular decompression: This helps remove an enlarged blood vessel pressing on a nerve. The procedure involves placing a soft pad between the blood vessel and the affected nerve.
- Stereotactic surgery: This is a noninvasive procedure that delivers highly concentrated radiation beams to the root of a damaged nerve. The radiation disrupts the transmission of pain signals to the brain.
- Balloon compression: This involves inserting a small balloon into the affected nerve. The balloon inflates, resulting in controlled, intentional nerve damage. This procedure prevents the affected nerve from sending pain signals to the brain. However, the effects of the procedure usually wear off after 1–2 years.
Outlook and takeaway
Neuralgia causes painful symptoms that vary in duration and severity. As well as pain, neuralgia can cause numbness, muscle weakness, and hypersensitivity.
If a person does not receive treatment, neuralgia can interfere with their ability to perform daily tasks.
People can work with a healthcare provider to establish the best course of treatment for their specific symptoms. If the condition does not respond to initial treatments, a healthcare provider may refer the person to a pain management specialist.
They don’t list antimicrobial treatment as a treatment for this, but it is. Again, if Lyme/MSIDS is behind it, the only thing that’s going to squash this pain at the root is to eradicate the pathogens behind it. Nothing touched this pain for me but long-term antimicrobials. While some of the listed treatments may help, they are bandaids. I talk more about this further down. Keep reading….
What you need to know about occipital neuralgia
Although headaches are a common health problem, occipital neuralgia is a specific type of headache. According to the American Migraine Foundation, it is also rare, affecting only 3.2 people out of every 100,000 a year.
Fast facts on occipital neuralgia:
- It is called occipital because it affects the area around the occipital bone.
- Pain associated with occipital neuralgia is often sudden and severe.
- Symptoms can be alarming, but they are not usually associated with any life-threatening health conditions.
How is it different from other headaches?
Headaches due to occipital neuralgia are frequently quite painful, starting with a sharp, stabbing pain, but most people with this condition respond well to treatment and most recover.
Occipital neuralgia is different from other types of headaches in two ways:
- The cause of the condition.
- The specific places where individuals feel pain.
Other headaches have more general causes, which can range from sinus infections to high blood pressure to medications and many other potential triggers.
But occipital neuralgia only develops when the occipital nerves are irritated or injured. These nerves are found at the second and third vertebrae of the neck.
Occipital neuralgia pain will only develop in areas touched by the greater, lesser, and third occipital nerves.
With one on each side of the head, the occipital nerves run from the spine to the scalp, and sensitivity can develop anywhere along this route.
What are the main symptoms?
For most people, the pain strikes on only one side of the head. It also tends to spread, usually from where the skull meets the neck, and then traveling up the back of the head and to the sides or behind the eyes.
In many individuals, the scalp can be affected, especially where the occipital nerves connect.
It can feel sore or extremely sensitive.
Light may also irritate the eyes.
Occipital neuralgia is described as coming in bursts of pain that come and go, lasting for a few seconds or minutes. At times, individuals may experience a lingering ache between more extreme bouts of pain.
Small movements can trigger an outburst of pain from occipital neuralgia. These movements include:
- turning the head to the side
- putting the head down on a pillow
- brushing or washing the hair
The pain can be quite intense, which can prompt some individuals with the condition to say it is like a migraine or a cluster headache, even though these are different types and require different treatments.
What causes it?
Different conditions and circumstances can irritate the occipital nerves, which then give rise to occipital neuralgia.
Injuries to the neck area, such as whiplash from a car accident or some other sort of trauma, can damage the occipital nerves and lead to this condition.
Tight muscles in the neck and the back of the head can put the squeeze on occipital nerves and pinch or entrap them, which can also lead to occipital neuralgia.
Problems with the spine, such as arthritis, degenerating discs, or spondylosis, are possible sources of pressure on the occipital nerves, as are tumors.
Other conditions that can play a role in developing occipital neuralgia include:
In many cases, it is not possible for someone to identify a single factor that damaged or irritated the occipital nerves.
How is it diagnosed?
A doctor taking a medical history and conducting a physical exam diagnoses occipital neuralgia.
This condition causes extreme tenderness along the occipital nerves. So, during a physical exam, the doctor may press on these areas to see if the pressure generates pain.
It is not always easy to diagnose occipital neuralgia because it has similar characteristics to many other kinds of headaches.
After initial exams, a doctor may order more involved tests.
One way to diagnose occipital neuralgia can also provide relief.
If a nerve block injected between the C2 and C3 vertebrae makes the symptoms go away, it is a strong indication of occipital neuralgia.
Deadening the nerves with anesthetics and corticosteroids helps individuals feel better, although the effects are temporary, only lasting about 12 weeks. However, injections into the vertebrae and numbing nerves are involved procedures, so a doctor will often pursue less invasive treatments first.
Can it be prevented?
For some people, antiepileptic medications and tricyclic antidepressants can prevent bouts of pain due to occipital neuralgia.
Doctors will usually recommend straightforward treatments when individuals are first diagnosed with occipital neuralgia. These include:
- warm compresses
- anti-inflammatory medications
- physical therapy
The aim is to provide many people with relief by relaxing and releasing the muscles that are putting pressure on the occipital nerves.
Other medications, such as muscle relaxants and anticonvulsants, can help offset symptoms.
Nerve-blocking injections, which are used to diagnose the condition, can also be used to prevent pain.
Pulsed radiofrequency may be employed to stimulate the occipital nerves to keep them from sending pain signals. Although this procedure is more invasive than massage and medication, it does not damage any nerves or nearby tissue.
Surgery is reserved for the most painful and difficult cases. Through a process called microvascular decompression, doctors eliminate pressure on the nerves by moving encroaching blood vessels out of the way.
Home remedies can do a lot to relieve the pain when tight muscles, injury, and stress cause occipital neuralgia.
Rest, massage, and warm compresses can help individuals work out the kinks that are creating pressure in their necks.
Physical therapy can help individuals work through the crisis phase of their occipital neuralgia and provide them with exercises they can do to prevent a recurrence of this painful condition.
Again, they don’t state that proper antimicrobials addressing the systemic infection causing this as a treatment, but it is. And for Lyme/MSIDS patients, it’s an extremely important treatment because as I stated before, all the others are mere bandaids.
This occipital neuralgia was my Achilles Heel and thorn in my side for years due to Lyme/MSIDS. I even had a MRI to rule out Chiari, which can be the result of a systemic infection. I met 3 people in the same week with a Lyme/MSIDS diagnosis who also had Chiari: https://madisonarealymesupportgroup.com/2016/04/02/chiari/
One of the best drugs for me was minocycline, due to its ability to cross the blood, brain barrier: https://madisonarealymesupportgroup.com/2017/06/04/minocycline-for-ms-and-much-more/
I’m certain there are plenty more patients with this symptom who have an undiagnosed Lyme/MSIDS infection.
Home remedies wouldn’t touch this pain with a 10 foot pole, much less NSAIDS. I would caution the use of corticosteroids as these will suppress your immune system. The caveat would be if you are on an antimicrobial regimen and your practitioner is monitoring you. I also caution the use of NSAIDS as taking massive doses of Ibuprofen about shut my husband’s liver down.
This pain may be the person’s first acknowledged symptom of Lyme/MSIDS. Often men will suffer and self medicate and deny a real problem. This is where spouses, friends, and family need to be educated about the possibility of a tick borne illness so they can mention it to the suffering person. If you are popping NSIDS like candy, something’s wrong. Getting them to an open-minded, trained practitioner who will consider tick borne illness is your next job. Contact your local support group for a list of ILADS-trained doctors.
Also, this pain for me radiated to the right side of my head from the occipital area to the right temple. There were times my right shoulder was involved with pain and numbness going all the way down my arm into my right pinkie finger. The finger would also move on its own. This can happen anywhere in the body.
The following neurological conditions may be responsible for headaches on one side:
- Occipital neuralgia: This occurs when nerves running from the top of the spinal cord to the scalp (occipital nerves) become damaged or inflamed. Symptoms include sharp pain in the back of the head and neck, pain behind the eye, and sensitivity to light.
- Temporal arteritis: Arteries in the head and neck become inflamed with temporal arteritis. Along with muscle pain, it causes a severe headache on the side of the head. Other symptoms include fatigue, jaw pain, and tender temples.
- Trigeminal neuralgia: This causes intense pain in the face and head. The pain usually affects only one side at a time. It is caused by disruption to the trigeminal nerve at the base of the brain.
Lyme/MSIDS infections can be behind all of this. Spread the word.