NEVER NEVER GIVE UP!
Yes, that's my attitude, and according to me that was precisely the reason that I was able to overcome epilepsy, according to me.
I was 5 years old when I got my first seizure.
I also suffered from all sorts of illness in my early teens, due to my poor health, same story year after year, during the summer. I had no choice but to face it, as it was MY fault. (I did not have good dining habits)
During school days, I did not know what epilepsy was. I used to call it DREAMING. At the end of each day, my mother used to ask me as to how many times I got the attack (DREAMING) and I used to tell her the number.
Then she used to ask me as to when I got it, and most of the time the answer would be while I was playing. My friends used to make fun of me, but that is all history now.
I went to lots and lots of doctors to get rid of this epilepsy. But none of them worked.
I was able to pass 10th standard with distinction inspite of epilepsy.
The problem of epilepsy became more acute when I was in 12th standard. More because I was more tensed up to get a good score. This led me to stress myself. In the end, I was just able to clear 12th standard.
As my parents realized that I was more prone to epilepsy when I was under stress, they admitted me to a Diploma course which is usually pursued after
clearing 10th standard, as they thought it would be easier for me to clear the exams.
But I thought of it as though I was underestimated after all Diploma is different from a Graduate, so I insisted that I should continue to go for Arts Correspondence Course at least for the invaluable "Graduate" Degree. I was very persistent with my stand, and eventually my parents agreed to accept my proposal.
Even during these three years I was getting minor attacks, but I used to ignore them.
Three years passed on. Now I had cleared both the Arts "Graduation" and the Diploma exams.
Results indicated that I got a very high percentage in my "Diploma" course. My parents were amazed, but this made me more aware as to how important planning was! I knew this as I had a clear plan as to how to approach the exams. More importantly, the plan was executed sincerely.
My teachers insisted that I should go in for Engineering, as I had scored.
Now I had nothing to lose, so I went ahead with Electronics Engineering. I got admission in VJTI College, as this was the nearest college from my residence.
Good thing was that I had very good friends at that college and they had understood my problem and they were not scared of me, neither used to hate me. Till date, this friendship continues. I really value my friends.
Meanwhile during the Engineering days, I too used to get attacks, mostly before the eve of the examinations. It was difficult going, but not impossible. So I kept on trying and cleared my Engineering as well.
After this, I got a job in Bangalore as a Software Engineer. My parents were reluctant to send me there, but now I was on duty, and it was my duty to work. So I had to leave my parents and go for the job.
But then I realized that it was a risk staying alone there. I felt homesick. I still used to get minor attacks, but I had already told my colleagues to stay calm and not to get disturbed by my activities. When at job, I thought I had to perform hard, otherwise I thought that they would lay me off. Maybe my employer would also think about myself having epilepsy, I thought. So I used to give more than 100% at my workplace.
This had the repercussion that my seizure
frequency increased. As I recall, I was on Tegretol that time.
More was in the offing. Soon one day I got a different type of seizure. And in fact these were more dangerous, as they would not stop. I had nausea and vomiting. Immediately I call my parents and got myself admitted to the Manipal Hospital with the help of my room mates. The doctors there gave me an anti-epileptic injection and the fits of seizures were controlled. I was then discharged out of the hospital and I saw my parents just arriving at the hospital gate. I could see the fear and the anxiety on their eyes. I can still feel it as I recall it. The doctors also told me to take the medications on time in order to avoid such type of scenario.
After a couple of months, I was reeling under fever, when I got an overseas assignment for a period of 3 months. I had to perform, so I went ahead. My parents were still worried. I could still recall the anxiety in their eyes. Thankfully I was okay till I came back. Since then I used to get minor attacks when I lost sleep or when I had disturbed sleep or when the medications were not taken on time. Even when I used to overexert, I used to get the attacks. In fact I used to play table-tennis a lot of times and my room mates also made a note that I used to get more attacks when I was overexerted. The attacks were so sudden, that I had to stop in between a game itself and used to take a deep breath. More importantly the attacks used to last only for around 15-30 seconds at the most and I was back to normal.
Months passed by. I had to go on another overseas assignment. Thankfully, no trouble this time as well!
As I was always had the feeling of homesickness, I got myself transferred to Pune and used to come home on weekends.
Till this time I used to get attacks. And by this time I was so frustrated with the minor attacks and the medication not able to help me. I thought, "What's the
use of the medication if it is not going to help me. It would not matter if I did not take the medicines as well."
Keeping this in mind, I gradually tapered my medications. No trouble, till one fine day...no night, I got an attack the ripped me of myself. I coiled both my hands and my legs and was standing like a rock. Four of my room mates tried to free me, but they could not. That weekend I came to Mumbai and visited Dr. Arun Shah. He fired me and then gave me fresh new medications. I happily accepted the medications and went to Pune.
It was some time now that I was also suffering from breathing problems. I was not able to breathe properly and I had allergic sneezing and wheezing issues to deal with as well. When going to sleep I had to breathe with my mouth open as my nostrils used to be blocked.
It was winter days during the month of October 2003. I had my dinner with my room make and came back to the rented flat. I was tired from office activities and dearly wanted to sleep. Since I was feeling breathless I had to breathe with my mouth open and was at unease.
Suddenly, nausea like sensation was felt and I vomited. I was able to go to the correct place and I kept on vomiting till the entire contents of the dinner were thrown out. Tired and exhausted, I went back to sleep. But the same sensation followed. This was repeated again and again and I was dead tired. I also felt anxious, as to if I get dehydrated, what will happen? I woke up my room mate and told him that this is an emergency and I want myself to get admitted to the nearest hospital. He understood the gravity of the situation and he readily agreed. I got myself admitted to Medipoint Hospital in Aundh, Pune. There I was first given saline. I persistently told them that I'm an epileptic and this might be the case of seizures as well. But their first reaction was that this is a case of gastro, and started the treatment.
Meanwhile my seizures continued and I was losing control of myself. I called up my parents and made them bluntly aware of the ground reality. They panicked, and made themselves available at the hospital in 4 hours time. I saw them coming, I could recognize them, but I could not speak to them because of vomits. My father frantically caught up with the doctors out there and convinced them that this was not a case of gastro and it was related with epilepsy as this had appeared earlier. The doctors tried to give me oral medications but that was vomited out. They also tried giving me medications for stopping the vomits, but that too failed. The doctors tried to contact the neurologist, but he was out of town.
At last the doctors had no choice, but to put me in the ICU. I was kept under observation for 1 entire day. There I was given heavy anti-epileptic dosages. The doctors found in a more stable condition and I was given a clean chit to go home.
It was a real ordeal for me and my parents. I was still feeling as if I'm a drunkard. The fact was that I was given an overdose of anti-epileptic medications which led to this scenario. Myself along with my parents left for Mumbai that day.
I immediately consulted Dr. Arun Shah. He told me to lower the current dosage. He also told me to take an MRI scan of the brain which was promptly followed and the results of which were reported to Dr. Arun Shah.
Meanwhile, I switched my job, so that I could be in Mumbai. The job location was at Borivali and I used to stay at Grant Road. It was an hours journey from my place.
There I used to work as a senior software engineer, always trying to push myself harder. This again led to my downfall clearly suggesting that I hadn't learnt my lessons. I had done the same mistake in Bangalore. The attacks reappeared. Here we had to work in shifts as well. This further added to my woes. On many occasions I had to work for even 24 hours and had to trudge my way home in the mornings. I appeared dead tied and was half dead by the time I reached home.
Meanwhile I used to get the auras and attacks occurred when I skipped the medication or when the medication timings were affected, due to the shift constraint. This continued for a year. As I consulted Dr. Arun Shah, he used to increase the dosage and also suggested to change my current job, but changing of job was not practical.
The increase in dosage made me more and more drowsy. Even as I worked, I was in a drowsy state.
Still I continued to work. Everyday was a fire fighting situation at our workplace. Now I was beginning to make more silly mistakes. I think I was expecting too much from my side, overloading my poor brain which did not have the capacity for this heavy load expectation.
Time passed by. Year 2005, I was waiting at Grant Road for the Borivali train to arrive. I saw the train coming, but at the same time I was getting an aura that an attack was about to begin. I took deep breaths, tried some acupressure points, but this time some how nothing seemed to work and the seizure occurred.
I was blanked out and the next time I came to my senses, I found myself sitting comfortably in the train. I thought to myself as to how did I land up in the train and that too on the seat without any harm done to myself. I could have easily stepped on the tracks before the train arrived or I could have hit myself against the center pole on the door inside or I could have gone straight onto the other door and in the process having injured myself by falling on the tracks. Anything could have happened!
This is the incident that rattled me, psyched me and zapped me! Then onwards I was feeling scared even to board a train and even when sitting in the train, I was feeling tense and anxious.
I realized that I had to take a realist view of the ground realities and I had to do it myself as soon as possible.
Priorities changed. Health was the number one priority for me from now on and I and I only had to do it, no matter what.
Why am I working for? Why am I neglecting epilepsy? What if I would have strayed onto the tracks? All these questions had to be answered!
This is the trigger that led me on the path of taking a serious note of epilepsy and the implications if I take it lightly. It was ignorance on my behalf I should add. What an irony! Being well educated, I was not educated for my health.
Now henceforth the only one thing I kept in mind is that "I have to cure myself. Anyhow" Firstly, the medications were regularized.
Suddenly one thing stroked my mind! How about SURGERY? Long time back I had read some article in a newspaper about surgery which can cure epilepsy. This was done at KEM hospital.
Being computer centric, I searched the entire sites on the internet regarding information pertaining to "Epilepsy surgery", its drawbacks, positives, safety etc. Majority of the sites gave thumbs up for surgery. They also mentioned a battery of tests such as "Vide EEG", "MRI", "Neuropsychological Tests" among others to be done prior to the surgery to validate whether the candidate is the right one for surgical treatment. It was mind blowing and interesting as well. Now I was able to understand a lot of medical terminologies.
As I was well equipped with all the information, I went ahead, since there was no harm in undergoing the tests. First I approached Dr. Urvashi Shah regarding the Neuropsychological assessments. The findings of the report were then sent to the Dr. Sangeeta Rawat for further investigations.
I was advised by Dr. Sangeeta Rawat to undergo the "Video EEG" tests at KEM hospital. I got myself admitted to the hospital for the tests.
The medications were gradually tapered and then I was moved to the Video EEG room.
The first time I was kept under observation for a period of 4 days in the Video EEG room with electrodes placed on my scalp and my mother sitting besides me with her eyes totally focused on me. All that she had to do was to wait for the seizure to occur. On the 4th day when I was about to be discharged from the Video EEG room, luckily I had a seizure, and the findings were recorded. The medications were then brought back to normal.
The doctors observed that the epileptic seizures were occurring from the right side of my brain. That was the point of the epileptic focus.
I.e. Epileptic seizures first originated at that point and then they used to spread to the rest of the brain resulting in a seizure.
The doctors at KEM wanted to ascertain this. So I was had to do a repeat Video EEG. Again the medication was tapered. This time I was to be kept under observation for a period of 3 days, but this time it was more horrible and terrible. As I got into the Video EEG room, I was already under the influence of seizures.
This time I did not have the normal "Habitual" seizures, but "non-Habitual" once which are more difficult to control.
By saying non-Habitual, in my case, I mean that most of the doctors do not recognize these types of seizures, and most of the times I have treated for gastroenteritis instead of epilepsy.
Let me be clear. When I'm under the influence of non-Habitual seizure, I get nausea like sensation during the attack and keep on vomiting on a regular basis. The time delay between the vomits may vary from 30 seconds to 30 minutes or even more.
The real problem is that when I get these seizures, invariably the anti-epileptic medications no longer have their effects on me, as these oral drugs are thrown out of the body through vomits and very few people seem to understand this fact.
Thus begins a vicious cycle of non-Habitual attacks. These attacks cannot be controlled by oral drugs, as they are thrown out of the body. The only solution for this is to have non-oral medication such as an anti-epilepsy injection.
Some of the doctors failed to understand this, as this is a rare scenario, according to me.
Back to KEM.
Now since I was under the influence of non-Habitual seizures, I kept on vomiting and vomiting and I had no control over it. First, the doctors did not seem to understand this, and invariably I was given saline to stop the dehydration. Meanwhile my parents knew about my non-Habitual seizures, and convinced the doctors about it. The seizures never stopped and I kept on vomiting. As my mother recalls, she told me later on that I was vomiting after every 5 to 10 minutes on an average. That boils down to about 200 to 300 vomits.
The situation was worsening all the time and the doctors were now faced with the problem as to how do they restore me to my original self. I tried to take my regular medications; the medicines would come out as I was continuously vomiting. This also worsened my epileptic attacks. I was caught in a vicious cycle. The doctors soon decided to inject me with an anti-epileptic drug instead of oral medication. It worked!
End of it, I was dead as a dodo. I just went to sleep. The doctors now seemed to be a relaxed lot as well. Till now I am not able to recollect the events that took place when I was having all those "non-Habitual" seizures, but it was a frightening experience, both, for me, my parents and the doctors as well.
Again I was discharged and suggested another Video-EEG test after a week's time.
This was the third time I was going for the Video EEG test, but this time, the doctors did not take any risk and my medications were reduced to a lesser extent. The result was I did not have a single episode of epileptic seizure and so I had to be discharged and I had to undergo another repeat Video EEG.
Now comes the fourth time. I got admitted to for the Video EEG tests. Now I was getting bored of this, but I was trying my level best to get an epileptic seizure by staying awake for longer hours. This time it clicked, fortunately. I got four to five seizures, all habitual ones. All of them were recorded and the findings were reported to the doctors.
Another lesson learnt. Persistence!
Meanwhile, I had also undergone volumetric MRI at Nanavati Hospital, as suggested by Dr. Sangeeta Rawat. The MRI findings indicated right-sided mesial temporal sclerosis. The right sided hippocampus was severely atrophied as well. The MRI findings were reported to Dr. Sangeeta Rawat.
After a weeks rest, I met Dr. Sangeeta Rawat, who categorically told me that all of my habitual seizures occurred from the right side of my brain and I should go in for surgery. The surgery suggested was "right sided Anterior Temporal Lobectomy" (right ATL). At this point I asked her as to whether there were any risks involved? She told me that as my right side would be operated on; there was some amount of risk to the vision area. She also advised me that if I delay the surgery and if the seizures occur repeatedly, then the left side too might be affected.
The second factor was age. Statistically it is observed that surgical outcomes are more successful if the surgery is done at a earlier age rather than later. I had gathered this information on the internet.
She also assured me that if anything goes wrong during the surgery, there was nothing to worry about, as the seizures wouldn't worsen. The only thing is that I had to take my usual medications as before.
She also warned me that even after surgery I will have to take the medications on time and take all the precautions as before for a period of time which may vary, depending on my response, after which the medications would be slowly tapered down.
As curious as I am, I kept on asking questions regarding "loss of memory" or any other disabilities. Dr. Sangeeta Rawat answered all me queries and while she answered, I observed her intently. The conviction in her eyes by which she answered the queries amazed me.
I had already visited many sites on the internet regarding the same queries. I just wanted to ascertain myself with the doctor in person. I also saw some epileptic patients who were operated, and as I interacted with the patient and their parents, I got a positive response.
I had to undergo a final Neuropsychiatric test. This time I met Dr. Neena Sawant. She went through the reports of Dr. Urvashi Shah and asked me a question: "Are you positive about the surgical outcome?" and I had only one answer: "I am neither optimistic nor pessimistic. I am realistic and I will accept any outcome that may arise of the surgery as I have nothing to lose." My conscience was clear, now that I had nothing to fear or be anxious about. She gave me the thumbs up.
My parents were a bit anxious and I feel it is absolutely natural. I cannot comment on this until I become a parent myself to understand their emotions.
I was prescribed some medication by Dr. Neena Sawant to be taken on a regular basis. I followed the doctor's instructions.
Now came the "D Day", 27th October 2005, the day on which I was to be operated. I was taken to the Operation Theatre at around 8:30 am. As I was going through, I did not panic at all. I was aware that this going to be was a regular operation and had complete faith on Dr. Atul Goel, the surgeon who was about to operate me.
Earlier I spoke with Dr. Atul Goel regarding the surgery, who assured me that this was going to be a regular surgery. He said "The fact that Dr. Sangeeta Rawat had referred you for surgery implies that there is no harm in removing the affected region from the brain. I'm just a technician. My job will be to remove only the affected region by studying your scans."
D-day begins..
It took some 4:00 hrs or so for me to come out of the Operation Theatre. Outside my relatives were pretty tense, but my mother stood firm and confident. Anyway I did not feel anything, as I was under the influence of Anesthesia.
I was then moved to the ICU, and within 24 hours I was moved out of the ICU to the Neurosurgical ward. I was kept in the ward for 3 days after which I was transferred to the Neurological ward. There too I was kept under observation for a period of 3 days after which I was allowed to go home. I was very eager to go home, even though it was tough going for me.
At home I took complete rest for a period of 10 days.
I had to revisit the hospital for removing my stitches. It took at the most 10 minutes to remove all of the stitches. It was a painless affair. I thanked all the doctors and the medical staff of both the Neurological and Neurosurgical wards. I was very happy and excited.
Dr. Sangeeta Rawat again reminded me to continue the anti-epileptic medication as before.
I noticed after a month or so that I was no more getting any types of auras, forget attacks. It was a marvelous feeling for me. It took me a while for me to come with terms with this fact! I became emotionally excited! Now I could lead a normal life with no more fear while traveling in the train. Even while at my workplace, I will not have to fear embarrassment. The confidence I gained was tremendous. The fear factor totally eclipsed and paved the way to confidence!
One thing I would like to share is that persistence and patience always pays. That is why "NEVER NEVER GIVE UP!"
by Amit Naik