Wednesday, October 7, 2020

Ingredients for secret recepies for Trigeminal neuralgia

 When you have trigeminal neuralgia you are bound to make a grimace of pain while growling eating solid food. The science of nutrition can help you get pleasure against the probable pain. When you feel you are in a nerve-shattering chaos good food can nourish you and help you get over the pain. So here are a few ingredients of secret recipes.







It's a simple fact that certain foods and sometimes, even the act of chewing, brings on pain for patients with facial pain. This occurs with all manner of orofacial pain.


Whether the trigger is in the type of food, the consistency of the food, the temperature of the food, or the odor of the food, or sometimes all combined, is irrelevant to the fact that taking in the nutrients causes pain. Therefore, a good sense of what constitutes an optimal diet and what constitutes essential nutrition is important to maintaining good health. Poor health, in the face of chronic pain of any type, be it back pain, diabetic foot pain, or face pain will make the pain seem worse.


However, the B vitamins alone, B1, B6, and B12 together, beneficial effect in the care of pain including neuropathic face pain.


Generic name of oats avena sativa.Sativa agents are of interest as it is in part related to the cannabis genus i.e., the same family as marijuana. Marijuana is an example in which a number of anecdotal reports of its usefulness in a variety of pain syndromes exist.

There are advocates of massaging vinegar over the relevant areas of the face and as this is a light acid it may have its beneficial effects.


Garlic can certainly produce adverse effects in such patients but may reduce muscle and joint pain.


Dairy Foods have been linked to the causation of pain.


Certain foods set off face pain and among those, we can include caffeine, chocolate, citrus fruits, and foods that have strong odors such as peppers, cinnamon.


Aspartame which is an artificial sweeter heighten sensitivity to pain.


Aspartame as it moves through the metabolic process simulates certain neurotransmitters involved in the pain transmission pathway and therefore may reduce the balance in the brain between the pro-pain and anti-pain.

Hot foods such as salsa, chili, hot sauce, and cinnamon candy have set off face pain.


Foods that cause pain

  1. nutmeg

  2. black pepper

  3. chocolate

  4. eggs

  5. citrus fruits

  6. meat

  7. wheat

  8. nuts

  9. tomatoes

  10. onions

  11. corn

  12. apples

  13.  bananas


Pain safe foods



  1. brown rice

  2. cooked or dried fruits such as cherries, cranberries, pears, prunes

  3.  vegetables such as artichokes, asparagus, broccoli, chard, collards, lettuce, spinach, beans, squash, and sweet potatoes.


Dietary origins of pain are linked to increased consumption of carbohydrates, especially the refined type and vegetable oils rich in omega 6, fatty acids of omega 3 are thought to be helpful, and decreased consumption of the omega 3s.


We should know the importance of eating carbohydrates that have a low glycemic index, i.e. carbohydrates that are slowly digested such as most whole fruits; most whole cooked or raw vegetables (with the exception of white potatoes); dairy, fish, and meat. Examples of bad carbohydrates, i.e. those digested quickly include most bottled fruit juices, bread, baked goods, breakfast cereals, wheat, white rice, and others.

Three in four of all people – 75 percent - are intolerant to dairy foods like milk, yogurt, cheese, and ice cream.

The presence of persistent symptoms like headaches, cough or asthma, frequent cold or flu, skin problems, stomach bloating, sinus pain, irritable bowel, depression, or low iron levels suggests dairy intolerance. The WHO points out that only one billion of six billion people in the world consume dairy products from cows.


A good diet can help keep cholesterol and blood pressure under control for good circulatory health. If an artery that is pounding on the trigeminal nerve develops atherosclerotic plaque because of high cholesterol, it pounds with even more force, causing more pain. 


B-vitamins, especially B1, B6, and B12 which are an important component of nerve regeneration and repair, and their effects on pain.


B12 is a water-soluble vitamin that is an essential part of the building block process for myelin and may contribute in that regard. 

If damaged myelin is at the heart of the trigeminal nerve's short-circuiting pain, then repairing it would seem to be a logical goal. Neurosurgeons address this problem by seeking to move a blood vessel away from the area where the vessel is beating on the nerve and wearing down the myelin.


RDA( Recommended Dietary Allowance)


Vitamin B-1 (thiamin). Breaks down carbohydrates and is needed for proper nerve function. Deficiency can cause depression, anxiety, and beriberi, a potentially fatal condition that includes pain or tingling in the arms and legs.


RDA: 1.2 mg for men, 1.1 mg for women. UL: not determined. 

 UL(Tolerable Upper Intake Level UL: the amount likely to pose no risk of toxicity for almost all individuals)



Vitamin B-3 (niacin). Needed for proper nerve function. Deficiency can lead to the degeneration of nerves.



RDA: 16 mg for men, 14 mg for women. 

UL: 35 mg.


Vitamin B-5 (pantothenic acid). Manufactures hormones and chemicals that regulate nerve function. Deficiency can cause nerve pain. Found in meat, poultry, fish, beans, peas, and whole-grain cereals.

AI(Adequate intake): 5 mg.

 UL: not determined



Vitamin B-6 (pyridoxine). Needed for proper brain and nerve function. Deficiency can cause a lack of coordination, nervousness, and convulsions. Overdose also can lead to nerve damage. 


RDA: 1.3 to 1.7 mg for men, 1.3 to 1.5 mg for women.

 UL:100 mg.


Vitamin B-12 (cobalamin). Used by the body as a component in manufacturing blood cells and in the production of myelin, the protective coating around nerves. Gross deficiencies of Vitamin B-12 can lead to nerve damage (both pain and inflammation) and to anemia, depression, and memory loss.


RDA: 2.4 micrograms.

 UL: not determined.


Vitamin E. Needed for the proper function of nerves and muscles. Deficiency can cause nerve abnormalities.


RDA: 15 mg.

 UL: 1,000 mg.


Calcium. Needed for nerve transmission.


RDA: 1,000 to 1200 mg. 

UL: 2,500 mg.


Copper. Used in the production of nerve fibers and the myelin sheath around nerves. Deficiency occurs only in severe malnutrition.


RDA: 0.9 mg.

 UL: 10 mg.


Magnesium. Regulates nerve sensitivity. Deficiency can cause tremors and twitching. Found in milk, cheese, broccoli, meats, seafood, spinach, tofu, popcorn, whole grains, legumes, nuts, and wheat bran. 

RDA: 400 to 420 mg for men, 310 to 320 mg for women. 

UL: 350 mg. 


Phosphorus. Needed for proper nerve function. Found in chicken, milk, lentils, egg yolks, nuts, and cheese. RDA: 700 mg. UL: 4 grams 

Potassium. Regulates nerve sensitivity. Found in bananas, oranges, and other fruit juices, broccoli, legumes, mushrooms, nuts, sunflower seeds, meat, fish, poultry, and whole grains. AI: 4.7 grams. UL: not provided.


RDA: 700 mg. 

UL: 4 grams


Potassium. Regulates nerve sensitivity.


AI: 4.7 grams. 

UL: not provided.


Adverse effects of mega doses


High doses of Vitamin B-6 can actually damage nerves within just three months, interfering with proprioception - the sense of orientation of your body in space. In one study, individuals who took 500 mg per day for a year began to stumble frequently and lose their balance. 

A few studies have reported an increase in kidney stones in people who were taking more than 1,000 mg of Vitamin C supplements a day.


High levels of Vitamin A have been linked to headaches and other neurological disturbances. 

Fat-soluble vitamins: A, D, E, and K — are stored in the body for long periods of time and pose a greater risk for toxicity than water-soluble vitamins. Fat-soluble vitamins are only needed in small amounts.


Although it doesn't guarantee it will have the intended effect. And more often even a good thing isn't necessarily better.


 One noticeable effect is the effect of garlic on reducing platelet function. Therefore, it must be used with caution when the individual is also utilizing non-steroidal agents or aspirin for similar reasons. Fresh garlic when applied to painful areas, has produced burns on the face and although it has been around since 3000 BC as an illness preventive, its use for neuropathic pain has had a limited evaluation. Garlic reduces cholesterol and lipid levels so that it may be useful and beneficial in atherosclerosis. Hence, garlic would be an example of a two-edged sword of nutritional therapy where too much or too little of what starts to be a good thing can be a problem for the patient and their overall health status.


Studies have shown, for example, that high doses of Vitamin E interfere with Vitamin K and increase the effect of blood-thinning drugs. Some others have shown that high levels of calcium inhibit the body's absorption of iron, that folic acid can mask symptoms of Vitamin B-12 deficiencies, and that high doses of zinc can lower copper levels.


Nothing should be overdone.




Friday, October 2, 2020

Trigeminal Neuralgia and noted celebrities who suffered from it

 Trigeminal neuralgia (TN), also known as tic douloureux, is a disorder of the fifth cranial nerve (trigeminal nerve). It is characterized by attacks of intense, stabbing pain affecting the mouth, cheek, nose, and other areas on one side of the face. Sometimes there's a constant dull aching or burning pain. Both types of pain can occur in the same individual, even at the same time. In some cases, the pain can be excruciating and disabling. If untreated, TN can have a profound effect on a person’s quality of life. In most cases, TN develops due to a blood vessel pressing against the trigeminal nerve, but sometimes no underlying cause can be identified (idiopathic). It can also be idiopathic, due to compression of the trigeminal nerve, or can occur due to a known underlying cause such as a tumor or multiple sclerosis. TN can usually be managed through medications, surgery or injections, or stereotactic radiosurgery.


Few notable persons with TN are 


  • British Prime Minister William Gladstone. It is possible that Gladstone's symptoms of "neuralgia" and "headache" were indicative of a more serious condition, Trigeminal neuralgia. He displayed characteristic symptoms: intermittent pain at varying intervals including wind or cold.


  •  Author Gloria Steinem had survived the pain of an illness that went too many months misdiagnosed by her doctors, an illness finally correctly diagnosed as trigeminal neuralgia.

  • Entrepreneur and author Melissa Seymour was diagnosed with TN in 2009 and underwent microvascular decompression surgery.

I was diagnosed with a condition called ‘Trigeminal Neuralgia’ and soon after underwent Neurosurgery to try and fix it. There is a very long story here but suffice to say, it wasn’t successful, and having contracted ‘Bacterial Meningitis’ in the hospital, well, you could say that things didn’t quite go according to plan and so a nightmare couple of years ensued (Brad –my husband – and I call those the Black Years.) About 18 months after that first surgery, I finally underwent another Neurosurgery operation, which was a great success, and after the three-month recovery phase, went about rebuilding my very broken-down life...she wrote 


  • Salman Khan was successfully operated from Trigeminal Neuralgia in Los Angeles in 2011. He has been suffering from this pain for the past 7 years and was on medications. But from the past 3 months, the pain has become unbearable in his jaws and finally, he decided not to neglect it further and get treatment.


  • Trigeminal neuralgia affects the trigeminal nerve in the face and can be excruciatingly painful. What felt initially like an earache, one weekend around Halloween in 2012, just a few weeks after Donegal's All-Ireland success, developed into a condition so bad that there were times when Toye "didn't know whether to stand or sit" with the pain. At night he struggled to sleep, by day he struggled to work. Putting on the gear and going out for a run was out of the question. The slightest breeze could trigger that dull, aching sensation that just didn't leave him.  All Ireland footballer Christy Toye" I thought it was an earache. I went to the doctor and didn't think much about it. But then it got progressively worse," he recalls.



It was a warm October morning and I was in a merry mood having a good time. I sat down with a book determined to enjoy it thoroughly but suddenly out of the blue something zapped across my right eye. The jolt of lightening appeared repeatedly. It lasted for a few seconds to a few minutes but it was difficult to keep my right eye open. This continued for the next few days but the pain was gone as abruptly as it appeared. I went to the neuro-ophthalmologist thinking about my optic nerve tumor but he said optic nerve doesn't cause pain and it looks like trigeminal neuralgia and I should visit my neurologist immediately. He did his examination and said it was TN and asked for an MRI. I underwent an MRI scan the next day and it confirmed the diagnosis of trigeminal neuralgia...“ Thin vascular loop of SCA abutting cranial aspect of the right trigeminal nerve at the root entry zone is noted.”


Contorted faces of men suffering from agonizing facial pain have been recorded historically. Greek and Roman physicians, who called it simply cephalalgia, meaning head pain. Persian physician, Avicenna, described it 900 years ago and even suggested that it might have something to do with an artery being near a nerve.


Branches of Trigeminal nerve


The mandibular branch( bottom) of the trigeminal nerve serves the lower jaw, including the lower teeth, lower lip, side, and front of the tongue, lower gums.

  • part of the ear. 

The middle or maxillary branch serves the 


  • the upper jaw, upper teeth, and gums, upper lip,

  • cheeks

  •  palate

  •  sinuses

  •  temples, and most of the nose.

The upper or ophthalmic branch serves 


  • the forehead, eyes

  • bridge of the nose.


There can be some overlap, especially in the eye itself.


The trigeminal nerves are responsible for the sensations of touch, temperature, and pain in most of the face. A separate branch of the trigeminal nerve also controls the muscles used in chewing.


The three main nerves come together in a ganglion (Greek ganglion ‘tumor on or near sinews or tendons,’). A ganglion is a collection of specialized cells linked by connection points [synapses] forming a swelling on a nerve fiber. This is the first neuron (primary neuron) in a pathway whose activity will eventually result in your awareness of being touched.

The nerve fibers and the nerve itself are sheathed by a fatty, protective substance called myelin.

The trigeminal nerves are responsible for almost all sensations from the forehead to the lower jaw, including heat, cold, pressure, touch, and, of course, pain. The right trigeminal nerve serves the entire right side of the face; the left one, the left side.


It is also known as"suicide disease” as a result of those who killed themselves to escape the pain.


One or both of the trigeminal nerves are misfiring, sending pain signals when they should not. Most of the time it is one trigeminal nerve, so it is one-sided. It is the loss of or damage to the nerve's protective coating, the myelin, is somehow related to the problem.



It's like in TN  what happens is when a plugged-in electrical wire loses its insulation: When you touch with bare hands, they spark, short-circuit, and the wire stops working as it should. In TN, the damaged nerve fibers are like bare wires and light touch is the “movement” of the wire that sets off sparking and the short-circuiting.


Few doctors and nutritionists have proposed that lack of Vitamin B-12 and possibly other nutritional defects prevent the body from building the myelin. Vitamin B-12 shots or mega-doses plus other nutritional changes may stop the pain. B12 is a water-soluble vitamin that is an essential part of the building block process for myelin and may contribute in that regard. If damaged myelin is at the heart of the trigeminal nerve's short-circuiting pain, then repairing it would seem to be a logical goal.


Pharmaceutical science has medications to control the pain without any invasive or non-invasive treatment.


I was initially put on medicine but it mostly didn’t contain the pain. I had fleeting jabbing pain which would fade away at the most in a few hours. Pulses of electricity traveled through my cheeks. Doctors upped and upped my dosage but I was not satisfied.




 I used to scream and awaken in pain when I turned onto the right side, the most painful side of my face.


I never knew how to cry because I was born without the vital emotion fear but when Trigeminal Neuralgia attacked me I learned to cry as the spontaneous facial pain that is predominantly constant and can be aching or burning in nature made it a tough battle for me every day and as I learned to shed tears of wicked pain hugging my mother at night when the soul screamed out with the agony and howling in pain. I hugged my mother and muttered and cried as the pain came loud and clear.

Because the length of time a blood vessel has been compressing the nerve may be the most significant concern. Blood vessels that beat on nerves year after year may cause a chronic injury that not only changes the nature of a person's pain but also makes it harder to treat. In that sense, largely, TN is a progressive disorder.



All my life I know one thing that is hope. I have undergone countless surgeries including cancer and a few life-threatening ones but I have never stopped as hope tells me better things are ahead...I can get through the toughest times. Hope tells me I'm stronger than the challenge I am facing for the past 12 years. Hope carries me to the right place and I found the right doctor in Mumbai HCG Khubchandani Cancer Center who said he could definitely treat me by cyberknife radiosurgery. 



It's 5 months after the cyberknife and the doctor did the cyberknife fabulously but I have new problems even though I have achieved the "good numbness” in the nose, lips, and in the cheek partially as was told by the doctor is needed to get “good relief.”


A strange burning sensation on my tongue on that side. A weird pain creeps outside the trigeminal nerve's territory, maybe into the back of the head, the neck, a bump appearing in the anterior part of the tongue, hearing metallic noises, and unable to swallow pills or having coughing fits while eating? Extremely dry mouth. I have chosen mostly nutritious but liquid food or puree but what to do with my essential pills and the bump? I couldn't get the cyberknife of the left side neither meet any local doctors to solve the problems. I am immunocompromised with lung damage and the pandemic stopped my treatment. Nobody wears a mask in my neighborhood and one by one people keep getting the virus. I am willfully imprisoned in my rented flat since I returned after the cyberknife. Care for the vulnerable should be the thought behind wearing a mask.



Thursday, October 1, 2020

Trigeminal neuralgia awareness








Despite the striking strength of this pain, TGN isn’t particularly well known. Most people never hear of it until they or a relative develop it. 

Sometimes the pain comes out of nowhere with no trigger at all. While a classic attack is sudden and sharp and then gone altogether, sometimes a low-grade ache or burning pain will persist in its wake for an hour or more. In some patients, the constant aching, burning pain is their initial complaint.


It was a warm October morning and I was in a merry mood having a good time because of the approaching Durga Pujas. I always try to make most of the time with my mother. The season is very inviting and makes us happy and less anxious. I sat down with a book determined to enjoy it thoroughly but suddenly out of the blue something zapped across my right eye. The jolt of lightening appeared repeatedly. It lasted for a few seconds to a few minutes but it was difficult to keep my right eye open. This continued for the next few days but the pain was gone as abruptly as it appeared. I went to the neuro-ophthalmologist thinking about my optic nerve tumour but he said optic nerve doesn't cause pain and it looks like trigeminal neuralgia and I should visit my neurologist immediately. He did his examination and said it was TGN and asked for an MRI. I underwent an MRI scan the next day and it confirmed the diagnosis of trigeminal neuralgia...“ Thin vascular loop of superior cerebellar artery (SCA) abutting cranial aspect of the right trigeminal nerve at the root entry zone is noted.”



Contorted faces of men suffering from agonizing facial pain have been recorded historically. Greek and Roman physicians, who called it simply cephalalgia, meaning head pain. Persian physician, Avicenna, described it 900 years ago and even suggested that it might have something to do with an artery being near a nerve.


Branches of Trigeminal nerve

The mandibular branch( bottom) of the trigeminal nerve serves the 

  • the lower jaw, including the lower teeth, lower lip, side and front of the tongue, lower gums.

  • part of the ear. 

The middle or maxillary branch serves the 


  • the upper jaw, upper teeth, and gums, upper lip,

  • cheeks

  •  palate

  •  sinuses

  •  temples, and most of the nose.

The upper or ophthalmic branch serves 


  • the forehead, eyes

  • bridge of the nose.


There can be some overlap, especially in the eye itself.



The trigeminal nerves are responsible for the sensations of touch, temperature, and pain in most of the face. A separate branch of the trigeminal nerve also controls the muscles used in chewing.


The three main nerves come together in a ganglion (Greek ganglion ‘ tumour on or near sinews or tendons,’). A ganglion is a collection of specialized cells linked by connection points [synapses] forming a swelling on a nerve fibre. This is the first neuron (primary neuron) in a pathway whose activity will eventually result in your awareness of being touched.

The nerve fibres and the nerve itself are sheathed by a fatty, protective substance called myelin.

The trigeminal nerves are responsible for almost all sensations from the forehead to the lower jaw, including heat, cold, pressure, touch and, of course, pain. The right trigeminal nerve serves the entire right side of the face; the left one, the left side.


It is also known as"suicide disease” as a result of those who killed themselves to escape the pain.



One or both of the trigeminal nerves are misfiring, sending pain signals when they should not. Most of the time it is one trigeminal nerve, so it is one-sided. It is the loss of or damage to the nerve's protective coating, the myelin, is somehow related to the problem.


The myelin damage results from a chronic irritation of the nerve usually a blood vessel compressing it in at least the first 4 millimetres of the trigeminal nerve where it connects to the pons (part of the brain stem).


It's like in TGN  what happens is when a plugged-in electrical wire loses its insulation: When you touch with bare hands, they spark, short-circuit, and the wire stops working as it should. In TGN, the damaged nerve fibres are like bare wires and light touch is the “movement” of the wire that sets off sparking and the short-circuiting.


Genetic changes may also play a role in the susceptibility of the nerve to react to mechanical pressure (vessels, tumours, etc.).


Some doctors and nutritionists have proposed that lack of Vitamin B-12 and possibly other nutritional defects prevent the body from building the myelin.


  1. Trigeminal Neuralgia Type 1 (TGN-1) has the sharp, shooting jolts of pain, often occurring in response to some triggering event (wind, touch). 

  2. Trigeminal neuralgia Type 2 (TGN-2) refers to idiopathic, spontaneous facial pain that is predominantly constant and can be aching or burning in nature. 

  3. Trigeminal neuropathic pain (TGN-3) results from unintentional injury to the trigeminal nerve from trauma or surgery.

  4. Trigeminal deafferentation pain (TGN-4) results from intentional injury to the nerve.

  5. Symptomatic TGN (TGN-5) results from multiple sclerosis 

  6. Postherpetic TGN (TGN-6) follows a cutaneous herpes zoster outbreak in the trigeminal distribution.    

  7. Atypical facial pain (TGN-7) is reserved for facial pain secondary to a non-organic process.


Pharmaceutical science has medications to control the pain without any invasive or non-invasive treatment.

The first drug used was phenytoin, a more effective drug—carbamazepine (Tegretol)—was introduced next and even now it remains doctors' top choice. Oxacarbamazepine has similar effectiveness, and patients report they seem to tolerate it better. There are a few add on drugs like Baclofen,  Gabapentin, Lamotrigine, topiramate, levetiracetam. There is also Duolexitine and Pregabalin.


I was initially put on medicine but it mostly didn’t contain the pain. I had fleeting jabbing pain which would fade away at the most in a few hours. Pulses of electricity travelled through my cheeks. Doctors upped and upped my dosage but I was not satisfied.


I had severe side-effects. I went somewhere else for consultation on less invasive procedures like damaging the nerve fibres with a heated electrode known as Radio-frequency Lesioning where an electrode is inserted through the foramen ( hollow or opening inside the skull) or Gamma- knife where beams of cobalt 60 radiation are used to damage the nerve. This was because the treating doctors were telling the haunting medical lore the melancholia of which was that Microvascular decompression (MVD) surgery is the only hope and while doing so they'd do a biopsy of my leptomeningeal hemangioblastomas not caring about the drastic and dramatic effect, not considering the highly vascular nature of the tumours ---that they are richly supplied with blood vessels. A biopsy would make them bleed resulting in a stroke. After my first brain tumour surgery, done in 2006 I woke up with paralysis on the left side. After the craniotomy ( open brain surgery) I experienced total numbness in my arms and hands and I couldn't close my fingers and make a fist. But this was sorted out by proper physiotherapy and exercise and I got back the control of my limbs but even now I don't have sensations in my fingertips. Looking at tumour cells in the cerebrospinal fluid under high-resolution MRI scans are all that is necessary for an accurate diagnosis moreover they are confirmed by Ga-Dotanoc PET scan. A biopsy isn't required for diagnosis as it may cause meningitis and blood loss thereby cell spillage.

There it was confirmed by the doctor that the left-hand side pain which is milder than the right-hand side is also due to trigeminal neuralgia. Thus I have a bilateral manifestation of trigeminal neuralgia. The trigeminal nerve has three branches: ophthalmic, maxillary, and mandibular. According to the doctor it is rarely seen that bilateral trigeminal neuralgia with pain in all three branches on both sides.


I revisited the neurologist who previously diagnosed it. A new medicine was added to my list of medicines. I asked him if it's true I had bilateral trigeminal neuralgia...he gave a knowing wink and said but the pain on the left side is milder...why should he hide it from me? Who is he to decide the intensity of my pain? Mistaking the pain in the jaw for dental pain I sought the help of a dentist. Because of my low immunity, I acquired some infection and got a 105F fever. I wouldn't have suffered if he hadn't held back the truth from me.



Bilateral TGN—the rare incidence of having TGN on both sides of the face—seems to be more common in patients who have a family history of TGN. That occurs in 12-20% of face pain patients. This is in line with the preliminary genetic studies reported thus far. They indicate differences in the pain genes, which may explain why the pain can be so severe.


About 13 per cent of patients have pain in all three branches. Many patients also report having their worst episodes during stressful periods in their life and I have been leading an unnaturally stressful life since my father died after my liver transplant.


Mostly, even now I scream and awaken in pain when I turn onto the right side, the most painful side of my face. Now I just feel a dull pain in the jaw and eye.


I never knew how to cry because I was born without the vital emotion fear but when Trigeminal Neuralgia attacked me I learned to cry as the spontaneous facial pain that is predominantly constant and can be aching or burning in nature made it a tough battle for me every day.


My heart stopped jumping with joy, enjoying the elixir of life, and as I learned to shed tears of wicked pain hugging my mother at night when the soul screamed out with the agony and howling in pain. I hugged my mother and muttered and cried as pain then comes through loud and clear.


Because the length of time a blood vessel has been compressing the nerve may be the most significant concern. Blood vessels that beat on nerves year after year may cause a chronic injury that not only changes the nature of a person's pain but also makes it harder to treat. In that sense, largely, TGN is a progressive disorder.


Nerve injuries also may interfere with the brain's ability to send stop-pain signals. So once an attack begins, it may not stop until the nerve has used up its supply of ions biochemicals and is physically incapable of firing anymore and threshold levels that we know of vary from person to person and from time to time. That may explain why one person with a compressing blood vessel ends up with terrible TGN pain while another person with a similar compression does not. There is a role for the genes to play here as well.



All my life I have kept looking for hope. I have undergone countless surgeries including cancer and a few life-threatening ones but I have never stopped hoping. Hope sustains us. I got this hope from Mumbai who said he could definitely treat me by cyberknife radiosurgery. In a Cyberknife instead of Cobalt-60, a 6 MeV linear accelerator is mounted on a robotic arm that moves around the patient and fires radiation from different angles. The patient is immobilised but does not require a frame to be screwed to the head.


Cluster tic syndrome 

Cluster tic syndrome is a name given to the coexistence of two different pains at the same time namely cluster headaches and TN (tic douloureux). Fortunately, the combination is very rare. This can be very difficult to diagnose because it has both the sharp, stabbing, come-and-go pains of TN and the more searing, boring traits of cluster headaches. 

Treatment may require a combination of the therapies used to treat stand-alone cases of TN and cluster headaches. In the long run, the cluster-headache component may resolve itself, while the TN pain can be addressed by surgery or other methods if anticonvulsant medications fail. In several patients who underwent surgery for cluster tic syndrome, blood vessels were found to be compressing either the trigeminal nerve, the facial nerve, or both.


In the MRI, before the planning, it was found ' A thin loop of anterior inferior cerebellar artery is seen overlying the 7th /8th nerve complex. However, no obvious compression or displacement is seen. The 7th/8th nerve complex is unremarkable.



It's 5 months after the cyberknife but I have new problems even though I have partially achieved the "good numbness” as was told by the doctor is needed to get “good relief.”A strange burning sensation on my tongue on that side. A weird pain creeps outside the trigeminal nerve's territory, maybe into the back of the head, the neck, a bump appearing in the anterior part of the tongue, hearing metallic noises, and unable to swallow pills or having coughing fits while eating? I have chosen mostly nutritious but liquid food or puree but what to do with my essential pills and the bump?



Genetic aspect:


Autosomal Dominant Vascular Disorders

Since familial TGN appears to be AD (autosomal dominant) and may be related to patterns of vascularity, known AD vascular disorders may help guide the search for a genetic locus for familial TGN. Moreover, familial TGN appears with other cranial nerve dysfunctions including those of the seventh and eighth cranial nerves. Autosomal dominant disorders with primary or secondary vascular involvement include hereditary hemorrhagic telangiectasia ([HHT] former eponym, Osler-Weber-Rendu disease), neurofibromatosis type 1 (NF1), cerebral AD arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL), von Hippel-Lindau disease (VHL), polycystic kidney disease (PKD), several ophthalmologic syndromes,

and a variety of vascular malformations including cavernous angioma and venous and arteriovenous malformations.

---------


Familial occurrence of trigeminal neuralgia is more common than previously considered. Although our results demonstrate variants in genes encoding voltage-gated ion channels and transient receptor potential channels within these patients, further study will be needed to determine their roles in the pathogenesis of trigeminal neuralgia.




Saturday, September 26, 2020

Post-operative hypoparathyroidism, my under-recognized disorder



I had a subtotal thyroidectomy in 2006 for multi-nodular thyroid leading to goitre with retro-sternal extension. It was one of the longest surgeries lasting for 6 whole hours.


In a routine ultrasound of the neck on May 14th 2014, it was found… 

"Left lobe of thyroid is not visualised (postoperative). 

Remnant of the right lobe measures 5.2x8.9 mm. Adjacent to it at least 4 hypoecohypoecoic nodules seen measuring 6.2 mm, 10.8 mm, 11.5mm, and 12 mm in size with increased vascular flow within as well as at the periphery on CDF1 images. These are suggestive of hemangioblastomas in a known case."



It is critically important for the thyroid surgeon to employ strategies for minimizing and preventing hypoparathyroidism (or Hypopara for short), including carrying out the most appropriate extent of thyroidectomy for a specific patient.



The most straightforward way to avoid HypoPara is to limit the extent of thyroidectomy to a unilateral approach. Though the historical rationale for a “near-total”  or “subtotal” thyroidectomy, instead of a total thyroidectomy, is in part preservation of the parathyroid glands, it has never been adequately studied whether this actually reduces the risk of HypoPara.


Parathyroid insufficiency, or relative HypoPara, may occur after central neck surgery and typically is manifested by clinical symptoms of HypoPara that require medical treatment,  despite measured laboratory values within normal ranges.   Transient or temporary HypoPara is defined as occurring for less than 6 months after surgery, while permanent HypoPara continues beyond 6 months after surgery.


The normal parathyroid function requires a rich blood supply; a normal parathyroid gland is composed of up to  30% capillary cells. Parathyroid blood supply is both delicate and complex and requires close attention during thyroidectomy to ensure its preservation. While the inferior thyroid artery is typically the dominant blood vessel that supplies the parathyroid within the thymo-thyroid cord (ligament) can dominate in some individuals.


Impaired PTH secretion results in postoperative hypocalcemia, through inhibition of bone resorption, reduction of 1,25-dihyroxy vitamin D synthesis by the kidneys, and reduced intestinal absorption of calcium.


Symptoms and Signs  


Hypocalcemia causes 

  • neuromuscular excitability and cardiac electrical instability due to a reduced nerve and muscle cell depolarization threshold.

  •  It's most common early symptoms are paresthesias, or numbness and tingling, of the perioral region and the fingertips. Muscle stiffness, cramps, and spasms are also common.

  •  Neuropsychiatric symptoms include confusion, anger, depression, lightheadedness, and irritability. More sustained muscle contraction may lead to laryngospasm, and more severe neural excitability may lead to seizures.   

  • Signs of hypocalcemia include observed or elicited tetany.  Classic bedside findings are a positive Chvostek sign (facial muscle twitching upon tapping the preauricular region over the facial nerve; present at baseline in up to 25% of people), or a positive Trousseau sign (flexion of the wrist, thumb, and metacarpophalangeal joints and hyperextension of the fingers, upon brachial artery occlusion by inflation of a blood pressure cuff above systolic blood pressure). 

  • Cardiovascular signs observed with progressive hypocalcemia include prolongation of the QT interval that can result in torsades de pointes, a form of ventricular tachycardia that may degenerate into ventricular fibrillation.


Acute symptoms may range from subtle to profound, and fortunately recognizable symptoms of mild to moderate hypocalcemia usually precede more life-threatening complications of severe hypocalcemia.

Calcium as total or ionized calcium blood levels are the mainstay of clinical monitoring.  However, consideration of  Vitamin D and magnesium levels is also necessary.


Hypoparathyroidism is a rare endocrine condition in which insufficient or inactive levels of parathyroid hormone (PTH) are produced by the four tiny parathyroid glands in your neck.


It may be due to a congenital, genetic, or autoimmune disorder that affects the function of the parathyroid glands or, more commonly, it may occur as the temporary or permanent result of surgery to the neck where there is removal or damage to the glands.


Insufficient PTH leads to low calcium levels in the blood, or hypocalcaemia. It causes electrolyte imbalance and can be a life-threatening condition if untreated. 


Why is calcium so important? Calcium is vital to life and affects every cell in the body. Most people know about teeth and nails in connection with calcium but its effects are on the whole body - nerves, muscles, and organs. It helps blood to clot and is important in energy production. Calcium is crucial to us which is why the body has special mechanisms like the parathyroid glands to keep calcium levels constant. 


Treatment with vitamin D analogues and calcium supplements is not ideal and can lead to long term renal problems. Calcium levels fluctuate but home calcium testers are not available so monitoring this condition can be challenging. Until 2015, Hypopara was the only endocrine condition without its own replacement hormone. Injectable parathyroid hormone is now licensed for use in the treatment of hypopara in the USA but is not yet available elsewhere.