How to get treated for the ‘suicide disease’

Trigeminal Neuralgia (TN) is considered by many to be among the most excruciatingly painful conditions known to man that causes a sudden, sharp and stabbing pain to one side of the face.

The pain cannot be described in words and yet many sufferers express it by using their imagination as someone giving them an electric shock or blasting a bomb on their face. Since it is a chronic condition of acute, ‘out of the blue’ episodes of unbearable and agonising pain, countless people, out of sheer frustration have committed suicide before treatments (and cure) were discovered. That is the reason why it is also known as ‘The Suicide Disease’.

An estimated one in 15,000 people suffers from trigeminal neuralgia, but in all likelihood, the numbers may be significantly higher due to frequent misdiagnoses.

To understand the treatment process better, we spoke to Dr Jaydev Panchwagh, an eminent Neurosurgeon from Pune (Maharashtra) with special interest in treating Trigeminal Neuralgia, reports indianexpress.

For the last 12 years it has been his mission to take brain & spine surgery to the masses. Here’s what he had to say:

Please tell us the course of Trigeminal Neuralgia, or TN?
Dr JP: TN is a progressive disorder, after the initial episodes of excruciating pain there may a pain holiday because body tries to heal the nerve that is getting compressed by pulsating blood vessels that come too close to the nerve for comfort.

What are the treatment options?
Dr JP: TN patients may find relief with one medication called carbamazepine. It is the only pain suppressant that works on stabbing, burning, searing, and sometimes electric shock-like excruciating pain of TN. It acts by reducing nerve impulses. If the pain is controlled by smaller doses then the problem gets temporarily solved. If the patient comes back with pain despite taking carbamazepine then we have to increase the dose but there are limitations.

What are the side effects with higher doses of carbamazepine?
Dr JP: Most common is drowsiness and sleepiness. The other side effects are difficulty in concentration, confusion, unsteadiness, nausea and vomiting, double vision and reduction in blood cells that help us fight infection. If one gets any kind of skin rash a doctor must be consulted at once. Same is with feeling of depression. There are some other severe toxic effects too.

What are the other options?
Dr JP: We recommend brain surgery to patients who need carbamazepine more than 400 mg per day or even lesser if it has to be taken on regular basis. What is this surgery called? Dr JP: Microvascular Decompression Surgery. MVD as we call it in short is a surgical procedure to relieve the agonising pain caused by compression of trigeminal nerve by an artery or vein. MVD involves surgically opening the skull and exposing the nerve at the base of the brainstem to insert a tiny sponge between the compressing vessel and the nerve. This sponge isolates the nerve from the pulsating effect and pressure of the blood vessel. This operation basically cures the TN. This is a far better option even when carbamazepine works even in small doses.

Why?
Dr JP: The very aim of this surgery is to stop the life-disturbing pain as well as save the patient from the toxic chemical and the untold misery it brings with it. Due to carbamazepine’s side effects on body and mind, people have given up their jobs even when they were on smaller dosages. So surgery is not only indicated if the drug does not stop the pain. It is indicated even if it stops and causes side effects. The drug which is given to stop the pain brings other diseases in the form of toxic effects. Please try to understand this that the disease is increasing in intensity inside while you are delaying the surgical treatment. Secondly, carbamazepine treatment doesn’t cure the disease. So it is NOT comparable or an option for the surgery. At best it is a pathetic compromise. A person on carbamazepine treatment has severely altered quality of life and has the continuous feeling of impending doom if a dose is missed. He or she is drugging the brain on regular basis. The other important aspect is that the surgery even cures the ‘side effects’ of TN itself.

That is interesting, can you elaborate?
Dr JP: I shall tell you one of my clinical experiences. As we have already discussed, TN has been described by the sufferers as the worst pain mankind knows and there is no exaggeration here. It is also called “the suicide disease” as in the absence of proper and timely treatment these people tend to have serious suicidal thoughts. And indeed there are instances of people have killed themselves. TN can disturb the patient’s mind and in some cases the effects are seen on the body too. So, coming to this case of a man from Jodhpur who had travelled all the way to Pune was in terrible agony. He also had severe psoriasis all over his face, scalp and chest. Psoriasis is a skin disease and one of the causes and aggravating factor is severe mental stress. This man was haunted by the pain and was under mental stress for many years. We operated on him. He had severe compression of his trigeminal nerve due a blood vessel deeply lodged in the root entry zone of his nerve. I had to perform the MVD surgery…and as expected, his pain vanished. For the first time in 12 years he was free of pain. He was duly discharged and returned to Rajasthan. When he returned after eight months for routine follow-up, I could not recognise him. You know why? His psoriasis was completely gone. You see, his pain and stress of many years were cured and this, in turn, treated his psoriasis. A glaring example of how the skin is, like all parts of our body is connected to the brain. I will go further in saying how the skin, like all parts of our body is an extension of our brain.

In other advise to the patients?
Dr JP: The painful attacks associated with trigeminal neuralgia can be triggered or made worse by a number of different things. For example, if the pain is triggered by wind, then it is better to avoid sitting near open windows or near the fan or air conditioning. Wearing a scarf wrapped around face helps when one is venturing out. Hot and spicy food or cold drinks may also trigger the TN pain.

Using a straw to drink warm or cold drinks may also help. It is important to eat nourishing meals, however, so if chewing triggers pain one must, consider eating soft foods or semi-liquid meals.