Trigeminal Neuralgia attack can be very severe and frequent as the disease progresses, and its treatment at that point in time may be very frustrating. It is when such attacks become frequent that the patient generally tend to take decisions about getting MVD surgery done. In this video, a patient shares her experience during one such attack and how she suffered through it. She also describes how her life changed for the better after she became pain-free after MVD surgery. Dr Jaydev Panchwagh, an eminent neurosurgeon and an internationally acclaimed one performed this Microvascular Decompression (MVD) surgery on her. Having performed more than 1350 MVD surgeries, at his MVD centre in Pune, India, he has a considerable experience in treating Trigeminal Neuralgia. The MVD centre also caters to international patients and has a support group.
Is Trigeminal Neuralgia serious?
The honest answer is yes and no. By itself it does not harm life, (except in cases of C-P angle Tumor) but the disease itself can be so debilitating, and its medical treatment so very challenging, that the patient often considers ending their life because of the pain and the fear of an upcoming TN attack. Click here to read more about the disease.
Trigeminal Neuralgia (Facial Pain) diagnosis
Electric shock-like pain in any or all of the three divisions of the trigeminal nerve brought about by trigger factors usually establishes the diagnosis of trigeminal neuralgia.
Trigeminal neuralgia causes
The pain of trigeminal neuralgia is usually caused by one or more blood vessel compression on the trigeminal nerve or a C-P angle tumor (Cerebellopontine angle tumor). There can of course be other causes. Click here to know more.
Trigeminal Neuralgia attack
The pain in Trigeminal neuralgia manifests as attacks of facial pain generally brought about by trigger factors like talking, brushing teeth, eating etc. The patients experience electric-shock like pain during the trigeminal neuralgia attack. The pain may have different manifestations in different people. click here to know more about Trigeminal neuralgia symptoms.
Trigeminal neuralgia medication, at least the majority of them, are anti-convulsants.
“How to take them-Trigeminal neuralgia medication?”
Can I take TN medication when I feel the pain coming on?
Can I add more drugs during a Trigeminal neuralgia attack?
Do I have to continue taking the Trigeminal neuralgia medicines even if I have no or minimal pain?
These are all questions that frequently come to the patients’ minds.
What is essential to understand is that TN medicines are not straight-forward pain-killers. They are primarily anti-convulsants or brain numbing medications. Once the first pill is consumed, it takes a few hours to reach the blood. The liver simultaneously metabolizes the drug, while some of it also reaches the brain to act upon. So in effect, the blood level reduces. Over a period of the next few hours, the blood level will become zero. Before this happens, we need to consume another pill to increase and maintain the blood level. If this does not happen, there is no effect on the pain as well.
In short, regular medication is essential to maintain a particular blood level of the drug, so that it calms the brain/ nerve. This calming effect means that they do not respond to pain signals, and therefore have a neuralgic-pain-reducing effect.
Another key point to be noted is that the dosages need to be very gradually increased (and decreased also).
What happens if I take too many TN pills?
Well, you will certainly start manifesting all the side-effects of these anti-convulsants, like drowsiness, dizziness, imbalance, mental clouding, memory loss, depression etc. This is why, their dosages have to be adjusted by your doctor, who will determine what is right for you. One typically starts with the lowest dosage twice or thrice a day. This may be increased to maximum doses four times a day.
What happens if I miss a couple of doses of TN medication?
The blood level reduces, and you may experience break-through pain.
Allergic reactions to Trigeminal neuralgia medication
When starting off drugs to control TN pain for the first time, one has to be aware of and be on the lookout for allergic reactions. Though rare, it is not unheard of. I have come across a few patients in my practice. Typically they are in the form of skin rashes. These may be the harbinger of a very serious and potentially fatal Stevens-Johnson syndrome. If one notices skin rashes on consuming TN medication, please inform your doctor immediately and stop taking it.
I suffered from Trigeminal Neuralgia and this is my patient testimonial:
I suffered from Trigeminal Neuralgia for five years before my Microvascular decompression surgery. Symptoms of TN for me was a severe shock like pain along the lower jaw.
For those of you who are wondering whether Trigeminal neuralgia is hereditary, the short answer is ‘ not really’. Having said that, there are cases reported where TN runs in families.
Can Trigeminal neuralgia be Familial?
Familial TN is unusual by all means. It is likely to be less than 2 or 3% of all TN patients. It is possible that patients inherit their familial ‘make-up’ of blood vessel contours or laxity, or lengths…we don’t know. Generally the familial type of Trigeminal neuralgia is on the same side in all affected family members.
Can Trigeminal neuralgia be inherited? Can TN be genetically transmitted?
The chances are so slim, that it’s not worth losing good sleep over it.
Have I seen a case of familial Trigeminal neuralgia?
‘No. I have only read case reports. It is likely that this condition is so rare, that one need not be too worried about it.’ Dr Jaydev Panchwagh answers.
Can children be affected with Trigeminal neuralgia?
Though it is unusual, it is not impossible. Diagnosing TN in children may be a problem, because they may not be able to express their problem clearly.
Parents ought to be more observant and help in establishing patterns.
My father and I both have Trigeminal Neuralgia. Is this hereditary? Will my children also have it?
It is possible that there are certain anatomical variations in either the brain and skull, or in the blood vessels that have predisposed both of you to have it. We just have to wait and see if it gets passed on to the next generation.
The youngest patient Dr Jaydev Panchwagh, a renowned Indian neurosurgeon has operated on is a girl of 22 years, who had been having it for five years. The operation was performed at his centre for MVD in Pune, India. With an experience of more than a thousand trigeminal neuralgia surgeries, he is one of the best neurosurgeons for such delicate and specialized operations.
You may watch his Youtube channel for more on MVD surgery for Trigeminal neuralgia treatment.
Is Trigeminal neuralgia permanent? This is one of the first questions patients ask, upon learning their diagnosis. It is natural to want to know how long they have to face these facial pain-attacks.
The pain of a TN attack is itself not permanent, but comes intermittently most of the times. In a few patients this pain, especially in those who have had it for a long time, may last a few hours at a time.
Does the pain of Trigeminal Neuralgia (TN) ever go away?
Unfortunately, no. The pain attacks keep appearing. Initially, the attacks are infrequent, later they become more severe and frequent or even continuous. the timeline varies for every individual who suffers from this.
There are periods, sometimes for months when the pain does not re-appear. It is called pain remission. Some people have short remission periods, and for others it’s longer.
As the condition progresses, the remission periods shorten and the attacks become more frequent. Very rarely, there may be near-permanent remission.
How long does the pain of Trigeminal neuralgia last?
The actual pain attack of TN may last a few seconds to a few minutes. The actual condition is unlikely to ever go away. Most patients need a combination of medications to keep the pain under control. Non-medical therapy helps in managing pain, and living with it. Surgical procedures give longer pain relief. Microvascular decompression surgery is the main option available for a possible permanent relief from the pain of Trigeminal Neuralgia.
Dr Jaydev Panchwagh and his team at the Centre for Trigeminal Neuralgia Treatment by Microvascular Decompression surgery have an experience of more than a thousand MVD procedures, in the last twenty years. The centre is known for the best treatment of Trigeminal Neuralgia.
I am Ketan Dixit, and I suffered from Trigeminal neuralgia. This is my testimonial of the treatment I received from Dr Jayadev Panchwagh, an Indian Neurosurgeon famous for trigeminal neuralgia surgery in Pune, India.
I would like to share my Trigeminal neuralgia patient experience with you all. I suffered from this horrible disease for nearly four years before I got operated. I was on Trigeminal neuralgia medications like carbamazepine etc, for many years. Continue reading →
In this section we shall be presenting a series of ‘Trigeminal neuralgia patient story’. The first is Maria from Mauritius.
This is the story of a woman, Maria, who lived in Mauritius. She was 45 years old when she came to us. She had been suffering from pain near her eye from 7 years. Initially she used to massage the area, and then noticed that massaging increased her pain. It used to come in short bursts, for a few seconds, like an electric-shock. She observed her pain for a few months, while her family members dismissed it as something that was not very serious. Over a period of the next few months, the pain spread to the lower part of her eye, near her nose and cheek, and came in more frequent bursts. Unable to tolerate this any longer, she visited her family physician, where she was prescribed many painkillers. They did not help and made her nauseous.
This is an article on Chronic facial pain (Trigeminal Neuralgia) from Times of India, Pune, published on May 7 2018.
For five years, 60-year-old Sawmy, a Mauritius national, suffered from severe pain in his face. Sawmy is an agriculturist by profession. He is married and has triplets.
The condition, Trigeminal neuralgia (TN) was such that he would go without eating for days together. Medicines would prove useful only for short periods of time. As is common in cases of TN, he was caught between the side effects of the high-dosage medicines and attacks of severe pain.
Any severe pain that remains untreated or partially treated for a prolonged period of time gets complicated, and its intensity worsens. This is termed chronic pain syndrome. In Sawmy’s case, the syndrome had turned his life upside down.
“In his desperate search to find a cure, Sawmy had gone to France — his sister lives there — where he consulted a number of doctors, to no avail. “I was on high doses of medicines. They were mainly three types of pain modulators. I developed drowsiness, forgetfulness and loss of balance due to the prolonged use of the drugs,” he said. All the doctors in France did was prescribe more medicines, which only worsened the side effects for Sawmy. “The repeated attacks of pain caused personality changes — they made me more irritable,” he said.
He eventually found relief in Pune, while browsing on Youtube and the internet. Though he didn’t have any acquaintances in India, Sawmy visited Pune after contacting Dr Jaydev Panchwagh over Whatsapp. “I contacted him for trigeminal neuralgia surgery. This alone speaks about the severity of pain I had, and how desperate I was to get rid of it,” he recalled. He now says that Dr Jaydev Panchwagh is one of the best neurosurgeons for trigeminal neuralgia surgery.
Explaining this unusual case, Dr. Jaydev Panchawagh said, “The drugs prescribed to patients suffering from Trigeminal neuralgia are mainly pain modulators. They are of different varieties or groups. The problem with the drugs is that they don’t target the Trigeminal nerve where the pain originates. So they (the drugs) act on the entire nervous system and cause neurological side effects.”
He added: “In simple words, these medicines numb the nerves. The drugs do not target the basic cause of neuralgia, which is vascular compression on the nerve as seen in majority of the cases, Dr. Panchawagh said.
“A very important aspect is the fact that chronic pain (if persistent for a year or more) can lead to permanent changes in the brain, including shrinkage, especially in the setting of neuropathy. Widespread impact on memory and cognition, sleep, sexual function, and development of hypertension are other important consequences. The psychology of chronic pain can best be understood as ‘learnt helplessness’, that is, the psychology of a person who is trapped in a situation from which there is no escape.”
Microvascular decompression surgery, or MVD surgery, is the most beneficial surgical treatment for permanently treating trigeminal neuralgia, claim doctors. “It is the only procedure which treats the basic cause of the trigeminal neuralgia,” said Dr Jayadev Panchawagh, who carried out the surgery on Sawmy. He has operated on more than 950 other patients since 2005.
Sawmy underwent the surgery under care of Dr Jaydev Panchwagh in Pune. “It has been 22 days now with no attacks of pain. I don’t have to take any medicines post-surgery. It is a huge relief. Surgery has proved to be a boon. I wish I knew about it earlier,” he said, when interviewed after his MVD operation for Trigeminal Neuralgia.
ABOUT THE CONDITION
There are two nerves-one on each side of the face-that carry the sensation from the face and gums to the brain. They are called trigeminal nerves. Sensations from the right side of the face are carried by the right trigeminal nerve. Neuralgia means nerve pain. Compression by a pulsatile blood vessel causes trigeminal neuralgia in a majority of the cases.
How patients describe the pain due to TN
* The worst pain experienced by mankind
* The pain you would not wish even on your enemies
* Death is better than this suffering
* Pain of 1,000 knives piercing the face
* A hot ‘chilli bomb’ exploding on one side of your face
This is a potentially misunderstood medical condition. The behavioural and emotional changes in the patient is difficult to understand for others. It is also a condition that can be diagnosed if one is aware of its existence.
* Trigeminal neuralgia is also known as the ‘suicide disease’ because of the intense pain triggered by talking, eating or even a breeze.
* A study has revealed the 92% of patients were unaware of the diagnosis prior to their doctor telling them..
* Most of them were treated for dental or jaw pain, migraine or even psychiatric illness
* The reason for misdiagnosis is low awareness of the condition.
My name is Harikrishna Sawmy Pillai and I live in Mauritius. I am in the agriculture business and need to drive heavy vehicles like tractors around. And it involves a lot of hard work.
How the TN pain began
I first noticed this pain five years before my surgery. The first time I went to see my neurologist in Mauritius, I told him my problem and he gave me some tablets.
My name is Mrs Parbatee Shyama Raghupooth, and I am from Mauritius. I suffered from Trigeminal Neuralgia since June 2018. Then I was started on Tegretol, to which I reacted badly. Afterwards, I was started on Gabapentin, Lyrica, Baclofen and all these were taking away all the joys of my life. In my acute phase, I used to have shots of Pethidine and Morphine; and lately my neurologist advised me to have cyber knife therapy.
