March 12, 2022

My Blepharospasm Journey 1: How it started

The Headache

It's all started with headache. I don't know if it's related but that is how my problem started. I had frequent headache. It happened maybe once  a month. Usually it was triggered when I missed my afternoon nap or I missed my 10am tea break. When my headache happened, it was only on the left side. And the headache made my left eyelid felt heavy. Sometimes I just couldn't open my left eye. It felt like something was sitting above my left eyelid. And usually I would felt nausea. Mabuk. Ini yg paling tak tahan sebab bila rasa mabuk tu yang tak boleh buat kerja tu. But all these would go away if I sleep. And this has been going on for 10 years... opss... Yeah, I just managed :)

Until Covid came knocking at my door..

The Covid-19

I had Covid in February 2021 when there were no vaccine yet. My symptom was mild alhamdulillah. I thought it was a normal fever because I did not have any close contact to any Covid patient. We were strictly at home  during MCO at that time. Merasa la duduk di MAEPS seminggu. My husband who was also positive did not have to go to MAEPS because he has no symptom during our checkup at CAC. The kids were all negative alhamdulillah. So they were the ones who took care of dad during that trying times, with humaira and maisara were just a few weeks before SPM. Kesian diorang. Nasib baik sempat habis kuarantin before the SPM.




When I recovered from COVID  the headache became more frequent. And when it happened, one night of sleep was not enough to make it go away like before. Sometimes it prolonged until 2 days. I thought it might be also caused by too much screen time and too much work. We were working from home with endless meetings, slides, presentations, etc. I was involved with 2 big projects (Stellar, SNI) which requires me to work a lot with documentations - process simplification, business requirement gatherings. I was also in my 3rd semester of my master study. So with all those assignments, projects, work tasks, slides, etc, I might have overworked myself a bit, now that I looked back. And the headache came unpredicted unlike before. It was not because of lack of food or lack of sleep. It just came whenever it wanted. Managing my headache was getting more challenging.

Occipital Neuralgia

When it becomes more frequent and more unbearable, I set an appointment with Dr Nor Faizal, a neurosurgeon in UMSC. Why neurosurgeon? Actually he is my husband's friend. So it was easy to get his advice even prior to our meeting with him. I had MRI in March. Alhamdulillah there were no abnormalities such as tumor or anything else. After further physical examination, I was diagnosed with Occipital Neuralgia. 

Occipital neuralgia is a distinct type of headache characterized by piercing, throbbing, or electric-shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head. Typically, the pain of occipital neuralgia begins in the neck and then spreads upwards. (definition by The National Institute of Neurological Disorders and Stroke (NINDS))

I was prescribed with Cereblex, a type of pain killer. But it did not help my headache. After further consultation, I decided to get the nerve block injection. It was a very quick procedure. I was injected at the back of my head. The medicine was injected directly into my occipital nerve at two spots. I was dizzy for a few minutes, but that was all. I was on MC for 4 days if I am not mistaken. Yeah my head was kind of feeling numb and funny for a few days. Macam sengal-sengal gitu. Alhamdulillah after that, my condition has improved a lot. The headache has gone. 

The Dengue Fever

It was Ramadhan. Suddenly I felt that I am having fever. It lasted for 4 -5 days. Oh no.. it can't be Covid again. After blood test, it was confirmed that I had dengue. I was admitted in Columbia Asia Hospital for 5 days. My mom said "Kok ada je ko ni. Hari tu baru kena covid, ni denggi pulak". "Habis tu macamana mak, mana iza tau" Well, my mom wasn't saying that because she was angry but because she pitied me.

To make things worse, I was actually just being promoted to a new post in a new division. I had to postpone reporting duty to the new supervisor as I was on long MC. Bad first impression huh.

Heavy Left Eye

Not long after I recovered from dengue, a new problem started which was my left eyes. Remember when I said that when I had headache, my left eyes would felt heavy. Yes it happened again but this time it was without the headache. During this time, my overall health was not very good too. I think my body still not fit after covid and then dengue. My weight was just at 43 kg (my normal weight is 48kg). I lost my appetite. I always felt macam nak demam, badan dedar2 and sometimes palpitation. Selalu rasa kebas-kebas badan/bahu. Senang kena cramp kat kaki, tangan, kadang kat jari pun boleh cramp. Sometimes I felt irregular heartbeat sampai buat checkup dengan cardiologist. But my heart was fine.

My condition get worse day by day especially the eyes. After some time, it was not just the eyelid, but I felt burning sensation at the back of my eyes and around the left side of my head. I really struggling with works and my study because of this. During work, I need to hold my left eyes open to look at the computer. Whenever I had chance, I would lie down and close my eyes praying that it will go away. My work was very slow. There are a lot of things that I cannot do as productive and effective as before. Just imagine what my new boss would think of me. huhu.. I was really in stress mode. 

Is it because of long covid? nerve problem? immune system problem?