I resuscitate ceaselessly, I wage wars with verve, In a point of no return, Yes, A Warrior Princess I am. ~a rare disease patient, author, & blogger with TOI
Sunlight helps you to soak up
Joy, blissful happiness as the soul wakes up
Life is a source of inspiration
The positive energy fuel satisfaction
I am not someone who is suffering
Low self-esteem or lack of confidence
I feel ample enthusiasm
Sun bring out your personal power
Living a dream life visualize aspirations every day
Extra boost of confidence or courage.
A test of inner strength awaits as the pressure builds upon the nerves and various problems build-up which may exhaust my energy with the approach of the winter months and a certain bored feeling sets in let alone the loneliness.
I had a liver transplant owing to several tumors in the liver which could not be taken out individually causing excruciating pain due to frequent hemorrhages in 2008. The largest lesion caused splaying of the portal vein around the lesion. Hepatic veins were compressed and displaced by the segment 4&8 mass lesion. I had two episodes of bleeding and in the last one asked the doctor to get euthanasia done. Bleeding in the hemangioblastomas required hospitalization and was excruciatingly painful.
Certain medications are nothing short of miracles for the patients who need them. Medications such as anti-rejection drugs, chemotherapy, and corticosteroids are life-saving for many patients, but like many treatments, these pharmaceutical marvels come with side effects. And at least one of these side effects requires some potentially significant lifestyle adjustments.
The side effect in question? These medications may increase your risk of infection.
In other words, drugs like sirolimus, prednisolone, Cyclosporine, Mycophenolic, or tacrolimus jeopardize your immune system. They are immunosuppressant drugs.
Sounds alarming, but what does it even mean?
What does it mean if a drug is an immunosuppressant? I have come across people who have confused it with immunotherapy.
Whereas Immunotherapy is a type of cancer treatment that boosts the body’s natural defenses to fight cancer. It uses substances made by the body or in a laboratory to improve how your immune system works to find and destroy cancer cells.
It means the medication has the potential to interfere with the processes in the body that prevent infection and this interference is what allows the medication to work.
How and why this happens depends on the particular drug. In general, however, the medication causes all or part of your immune system to “turn off” so that your body doesn’t go into attack mode, waging war against whatever it sees as a foreign invader.
This almost implies that if you are taking some of these medications you will fall ill every time you pass by someone with the sniffles along with the big stuff, like the flu or tuberculosis. Are you going to need to live in a bubble from here on out?
What are the side effects of immunosuppressants?
Fortunately, in most cases, an actual bubble won’t be necessary. Unless there's a pandemic going on and you are ill-fated that the army to protect you is disarmed. However, it is extremely important to understand the outcomes of living with a compromised immune system so you can protect yourself.
Side effects of immunosuppressant medications may include gastrointestinal problems like diarrhea, nausea, and vomiting. However, the most serious side effect of taking an immunosuppressant is the risk of infection.
That could mean catching every single bug your family member brings home from work or the very real possibility that a flu diagnosis will land you in the hospital. You are also more likely to experience complications from foodborne illnesses, bug bites, and environmental hazards (like mold). Oh, and you know all of those recent H1N1 outbreaks? You could be always at risk. Immunosuppressants also leave you at risk for very rare and difficult-to-treat infections, molds fungal pneumonia, and certain types of lymphoma.
Being diligent about basic hygiene procedures such as hand-washing is the only way out.
Everyone knows that hand-washing is the best thing you can do to avoid getting sick, but it is even more important for those who are immune-compromised and anyone who comes into contact with them.
Make sure to wash fruits and vegetables.
Avoid people who have active infections (don’t be shy about telling people to keep their distance, either).
You may need to wear a mask
at times (if you are on an airplane and people are coughing, for example), and it is also wise to avoid large crowds.
Staying up-to-date on all of your vaccinations is extremely important.
Adopt healthy lifestyle practices (get plenty of sleep, exercise, and eat a healthy diet).
If you think you might be sick or show any signs of infection, call your doctor immediately. The wait-and-see plan that applies to so many other people does not apply to the immunocompromised population. This is especially true with fevers.
If there is a high fever, they need to run to the emergency room so they can see a healthcare provider but I got a mysterious fever when I got to the emergency room of Medanta the medicity at 2 am in the morning because I was getting tetany and needed calcium drip.
Soon after discharge from the hospital after liver transplant, I got viral infection varicella and was treated with Zovirax...my experience of first viral infection.
It was my plight when I was diagnosed with an RCC H1N1 that was raging in Delhi and I had to commute to different hospitals because Medanta doctors wanted to do a needle biopsy before taking the tumor out. I would have gotten seeding that way and metastasis in the process would eventually have occurred. I traveled to different hospitals and got a cuckoo fever which wouldn't go. I couldn't get my blood tested for H1N1 and the clock was ticking because my RCC was 2.8 cms just a little below the threshold. The surgery was confirmed with Dr. Gogoi at FMRI but still, he said he can't perform surgery with an infection in the body.
By Divine will I thought of calling Dr. Randeep Guleria, he gave me some medicine over the phone and green cough syrup and I believe it's his experiences and expertise that I recovered and became ready for the surgery.
I always wore a mask when I went out. I carried and still did till before the lockdown a hand sanitizer in my handbag. You can never take enough precautions.
During the winter months, my brother came to spend time with us. He has a sinus problem and gets a cough and cold because of the weather change the whole winter, I had no sleep spending time coughing away.
The ultimate example of the risk of infection is getting MDR-Tb. I was losing more weight than the exercises I was doing and the food I was taking. I never had outside food but still, the doctors didn't think of that. Two years after the liver transplant I had a bewildering high fever which puzzled the doctors. After three months of continuous fever with a swollen lymph node made the physicians think. The lymph nodes biopsy showed TB infection(AFB+). More than 4 months of being on anti-Tb-treatment showed lung condition worsening. HAIN test confirmed that the bacteria is resistant to Rifampicin, Isoniazid and ethambutol hence a change was implemented but it didn't work and I stopped walking due to immense pain pelvis onwards. Head and Neck surgeon, Dr. Handa removed the TB bacteria-infected lymph node, did surgery of lymphadenopathy.
Dr.Randeep Guleria of AIIMS changed the medicines to highest degree antibiotics and the expensive drugs cured MDR-Tb but till this day I need a walking stick to walk and can't do most of the daily jobs for which I have to depend on her 69 years old mother and I can't climb stairs.
All the time I use tissues, to wipe my face, eyes, nose because I was advised not to use a handkerchief as if you fold it in and use the other side the infection will be back and I don't have the power to fight them. My faithful troops
have been disarmed or perhaps just turned off. I always wash my hands properly but in the freezing winters or when outside use hand sanitizer to control my infections.
I have the rarest brain tumors... Between 1902 and 2013, approximately 132 cases were reported. Few studies have reported leptomeningeal involvement in sporadic HB or in HB associated with von HippelLindau syndrome.
Because no case of de novo development of disseminated HB without previous surgery has been reported, it is strongly suggested that the spillage and spread of tumor cells through the CSF space may be an origin of hemangioblastomatosis in patients with a genetic predisposition to the condition, Care should be taken to avoid tumor cell spillage during surgery.
When another mass was illegally cultivated on top of the kidney, a Ga-DOTANOC PET-CT based SSTR imaging because VHL syndrome associated hemangioblastomas frequently express SSTR confirmed that the floating lights in the patient's brain are hemangioblastomas. With this, the true nature could be seen and the diagnosis was confirmed.
A biopsy isn't required for diagnosis as it may cause meningitis and blood loss thereby cell spillage.
A fellow remarked after he saw the picture of the scan of my brain tumors
" you have more tumors in the brain than people have lice in hair.''
There is no data on the competence of the surgeons and equipment used in the initial CNS surgery so trying to determine if cell spread was caused by any incompetence during my brain surgery (craniotomy) in 2006 would be extremely difficult if not impossible to prove beyond a reasonable doubt. The fact that the physiology of each tumor is different and the number of cases is so small means that an accurate comparison of surgeons is impossible.
I get stereotactic radio-surgery before the growing tumors start putting pressure on the brain and become symptomatic. I have lost vision of my right eye for not being able to avail radiation therapy at the right time because of financial reasons and also because I was diagnosed with an RCC ( kidney cancer) at the same time.
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.
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 the 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 lightning 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 the 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 the superior cerebellar artery (SCA) abutting cranial aspect of the right trigeminal nerve at the root entry zone is noted.”
If you experience these cataclysmic episodes, your life will change forever.
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.
It is also known as"suicide disease” as a result of those who killed themselves to escape the pain.
I had a subtotal thyroidectomy from which emerged HypoPara.
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 analogs 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.
Recent problems are swallowing and tackling. I have lost weight up to 10 kgs and if I am forced to talk I get pain in my larynx area and my voice changes.
Everywhere there is a glimmer of hope. Hand-holding fantasies are not there in my life, rather everyone would like to swat me out of the way. Sometimes I feel the need for someone, not to take away or bear my pain but just to support and care about me. From my childhood journey to middle-age, I became a warrior but nobody stood by me. Life was much different for me, when I needed support from everyone, I rarely got support from anyone. Thanks to the internet and social media when I need support few people don't turn their faces. The rest peacefully ignore the agony of others. It includes friends, family, school teachers, everyone.
There's always a glimmer of hope. There is cancer, depression but everyone can get out of it. The glory and brightness of life! When you arise in the morning, think of what a precious privilege it is to be alive to breathe, to think, to enjoy being alive so please don't keep wringing your hands.
My mother is a different being altogether. Granny tranny used to make her do heavy chores when she was pregnant and she lost her first child due to the heavy work she was coerced to do. She worked too hard to bring me into the world. She cares for me
" I feel that living with multiple rare diseases with an overwhelming battle is my plight of my child, the journey with rare disorders. I believe perhaps surviving those ill-fated surgeries where the doctor gave a deadline or said " Everything is in God's hands" because she has a greater purpose in life. For that, to live this debilitating life more than it has been predicted. We need support from everyone, it's true we rarely get support. To stay true to our goals in life, we need true, honest, support."
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
nutmeg
black pepper
chocolate
eggs
citrus fruits
meat
wheat
nuts
tomatoes
onions
corn
apples
bananas
Pain safe foods
brown rice
cooked or dried fruits such as cherries, cranberries, pears, prunes
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.
