It has been one week since I’ve had a headache. I havn’t had a headache free period this long since August 2009. I am naturally very happy and also, thankful to God. I think my Doctor, a neurologist, deserves a lot of credit for this, as he was the one who suggested anti-coagulation therapy to me, after so many doctors had failed to treat me. In case you are wondering what I am talking about, here is a little recap.
It all began in the spring of 2004. I was in the last year of school, and my parents had just filed for a divorce. It had been a tough last couple of years for me, with things being pretty rough in the house. A lot was changing around me, and there wasn’t much I could do about it. I tried to remain strong and focus on my studies. One day, while returning home from the coaching class, I started feeling a sharp pain my left eye. It was something I had never experienced before. It felt as though something or someone was pulling my optic nerves like a rider pulls the leash of a horse. I wore glasses and thought that the power of my left eye had gone up. So I went to get my eyes checked. The optometrist told me there was nothing wrong with my left eye. I was a little relieved and ignored the pain.
As the days went by, the pain grew worse and started spreading in the head. I didn’t know what was happening. All I knew was that it felt like somebody was stabbing the left side of my head repeatedly. Although the pain was infrequent at that point, it was intense and prompted me to see my GP. After examining the symptoms, he said he suspected Migraine. I didn’t know what he was talking about. I had never heard that term in my life and had no idea what it entailed. He prescribed an over-the-counter analgesic for the pain. I came back home and discussed the meeting with my Mom. She comforted me and asked me not to worry. ‘It’s only a temporary thing and would go away soon’, she said. I somehow believed her, not having the slightest idea of what was to follow in the next six years.
It did not go away. In fact it came back stronger every time thereafter and starting dictating my life. It would come on suddenly and leave me paralysed. I could do nothing but just take a pill and lie down. It started affecting my studies. My school attendance began declining and my grades slipped. Even the analgesics weren’t working. I did a lot of research on migraine and its treatment. The more I read, the more scared I got. Migraine is incurable. Somebody suggested homeopathic treatment and I went to see a top doctor in the field. After asking me nearly four hour worth of questions regarding my condition, he gave me some medicine, which I took for a week. There was very little improvement. Homeopathic treatment takes a long time to work and didn’t have that kind of patience. Then I saw an Ayurvedic doctor who also gave some medicine which not only had no effect, it was the most disgusting, most horrible tasting thing I had ever had. I had had enough of all this rubbish and went back to western medicine. I started taking this NSAID (Non-steroidal Anti Inflammatory Drug) called Diclofenac Sodium. It was really effective and took only a few minutes to knock out the pain. I had no idea that it was a really dangerous drug, banned in several countries. At that point, I didn’t have other symptoms normally associated with migraine, such as nausea, vomiting, aura etc. It was just really bad unilateral headaches and occasional sensitivity to light and sound. I used to get these headaches once about every two to three days, sometime less frequently.
This pattern continued in college and it was manageable. I was quite fine until the second year. In the second year, the headaches started to get more frequent and now even my trusted drug was losing effect. Again my attendance went down and so did my grades. I started going into depression and became unsociable. I saw a lot of doctors during this period, including eye specialists, ENT specialists, neurologists, headache specialists, etc, and despite spending hours and hours with them explaining my case, they couldn’t treat me. I was losing hope and getting addicted to pain killers. The frequency of my headaches was increasing and became worse during summer and monsoons. I was getting about two to three headaches a day, with the pain killers lasting for only about 5-6 hours. A lot of foods like chocolates, cheese, soft drinks, orange juice started triggering my headaches. Not only was I depressed, I couldn’t even eat my favourite foods to feel better. BBA was over but the headaches weren’t.
A couple of months after BBA, in June, I saw the top neurologist in Baroda. He also diagnosed me with migraine and prescribed me a bunch of medicines including more effective pain killers, preventative drugs and anti depressants. The medicines were able to control my headaches for a couple of weeks but lost their effectiveness later on. My headaches got so bad that I had to cancel my plans of going to London for MBA. After the failed treatment, I saw that same neurologist again along with a couple of others, in August. They prescribed me an MRI and CT scan of the brain. The scans revealed the following:
- a deviated nasal septum (a shift in the partition in the nose)
- Cerebral Venous Sinus Thrombosis (a blood clot in the sinus)
- Diffuse Dural enhancement (thickening of the Dura Mater, which is the layer of tissues covering the brain)
- The possibility of Idiopathic Hypertrophic Chronic Pachymeningitis (inflammation of the dura mater due to bacterial or viral infection).
The report was very serious and required immediate attention. My doctor asked me to undergo a Lumbar puncture to check the Cerebrospinal fluid (CSF) pressure and the presence of a possible infection in the CSF. The lumbar puncture is a diagnostic test for pachymeningitis. When the doctor told me that the procedure involved inserting a needle into my spinal cord and extracting the CSF, I got apprehensive and said no. My parents were abroad and I didn’t want to take any chances. When my mum returned, we decided to Ahmedabad and consult the best doctors there. Strangely, all the doctors there said that there was nothing to worry about as all I had was migraine. They also prescribed migraine medication, which I took for a while and stopped because it didn’t work. After that we went to Mumbai to consult the leading headache specialist in Asia. After a long consultation with him, he also dismissed off the brain scans and diagnosed me with migraine. The moment he said that, I knew he was going to prescribe migraine medication as well and that’s what he did. Although I had no hope, I still tried his medication for a few days but there wasn’t any improvement. I had joined TCS and the busy nature of the job helped in diverting my mind off the pain for the first few months. However, my symptoms started getting worse in the last few weeks and I had to quit. With no hope of getting treated, I decided to go to UK for MBA. I would never know why.
My headaches somehow subsided briefly in London and I was able to study and work. But in a couple of months, the headaches returned with a bang and started taking their toll on my life. It was harder to cope with the pain in a foreign country with no one to look after me. Once again, my attendance dipped. I got irregular with my job as well. I saw a local GP there who prescribed me some medication. It was reasonably effective and kept the headaches down but didn’t relieve me of them completely. I used to get attacks intermittently. I scraped along for a while but in July, my worst period started. I started getting non-stop daily headaches with little relief from pain killers. I started taking more and more pills which only compounded the problem and started giving me rebound headaches. More and more days started going in bed. My headaches started to be accompanied by nausea and unstoppable vomiting. There were countless days when I vomited all day, every 2 minutes. My mum had sent me ayurvedic medicine from India which I took for nearly two months but with no effect. I was losing weight and growing weak. Everybody around me was worried. They had never seen something like this. They all tried to console me but nothing worked. Life was really miserable. I didn’t want to live. I couldn’t attend college or go to work. The college was sending me mail after mail and even threatened to cancel my visa. I was finding it hard to pay my rent as I couldn’t go to work. I just couldn’t stay in that country. I returned to India and continued the ayurvedic treatment I had started in London. Four months went by but there was no relief. I was in bed 24x7 with horrible headache and constant vomiting. I stopped the ayurvedic treatment and started homeopathy again. It offered some relief but not enough for me to stick to it for long. 2009 was over and I can safely say that it was the worst year of my life, healthwise.
Somebody told us of this doctor in Mumbai who was supposed to be a top neurologist and a brilliant diagnostician. As a last throw of the dice, I decided to go and see him. He saw my brain scans and said he was startled nobody had taken them seriously before. He said that my headaches weren’t caused by migraine but due to things going majorly wrong inside my head and possibly blood. He asked me to go through another MRI to check if things had gotten worse since the last scan. The result was positive and he asked me...I’m sorry, forced me undergo a lumbar puncture, something I had said no to the last time around. The procedure was highly unpleasant and definitely not something I’d like to go through again. Thankfully, the result of the LP was negative which meant that my CSF pressure was ok and I didn’t have pachymeningitis. However, the MRI did reveal Cerebral Venous Sinus Thrombosis, which led the doctor to put me through a series of blood tests which lasted over a month. One of the blood tests, the Lupus Anti-coagulant test, revealed that I suffer from what is called Antiphospholipid Syndrome or Hughes Syndrome. It is a very rare and serious condition wherein the patient’s blood has the tendency to form clots, due to the presence of lupus antibodies. It is an autoimmune disorder which has no cure and the treatment for it is lifelong. The doctor put me on Anti-coagulation therapy entailing a daily dose of Warfarin (a blood thinning drug), restriction on the intake of anything with vitamin K and regular blood tests to check my blood thinness. I need to keep my blood at a particular level. If it gets to too thick, I can develop clots and bear the risk of a stroke or heart attack. If it gets too thin, I can develop bleeding. It’s quite dangerous.
But thankfully, due to the anti-coagulation therapy, my headaches have subsided significantly and after a long time, I’ve had a whole week without headaches. I am feeling a lot more positive and hope to go back to London in June to finish my studies. I’ve suffered terribly for the last six years but something tells me that the worst is behind me and that life ahead is healthy and happy. I have faith in God.
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