Archive for the 'Epilepsy' Category

Yesterday I forgot to take my morning medication again. Sigh! I put them in a medicine box and try to take them immediately after breakfast at around the same time every day. I even set and alarm to ring later on in the morning daily as a reminder to myself and yet I forgot.

I must say that taking medication on a long term basis has a bit of a physcological impact. When I forget, it really upsets me and makes me worry. I worry about suddenly having a seizure and frightening the kids. I worry about waking up in hospital and forgetting what had happened. Its a scary and not very nice experience to have that happen.

Oh well, now that I’ve got that out of my chest its time to forget it and think about nicer things instead. Just like I tell my daughter whenever she tells me “Mummy, I’m scared I cannot sleep. I’m scared I think about the monster on TV.” I would tell her, “Don’t think about the monster. Think about happy things that you like instead and you won’t be scared.” I guess the same applies to me. Hehe.

Image is from budgetstockphoto.com

It would seem that we pop more and more pills as we grow older. My dad has to take his blood pressure medication and medication to control his colestrol. Recently he was prescribed a memory pill to improve his memory. This caused him to have insomnia and when we told the doctor about it the doctor said he should take sleeping pills to help him sleep. I think its getting out of control.

I have to take pills too. Twice a day so that hopefully I don’t get another seizure. Its really hard to remember to take my medicine. The best way of course is to keep them in a pill box and take them right after a meal. The best way is to have a routine and to take them at the same time everyday.

Even then I forget occassionally especially when there is a break in my routine. So to everyone out there who has to make sure their elderly parent remembers to take their pills, please be patient with them. Its really not easy to remember.

I can’t remember so what more when it comes to an elderly person who has a poorer memory. Be patient and don’t be frustrated.

The doctor’s appointment which I had been agonising over is finally over. It was just a routine visit but I was anxious about it. After all, I had waited 3 months to see him just to ask the few questions that I had in my mind.

The doctor was very kind and patient, even though I saw him looking at his watch and he had to refer to his notes a lot when I asked him some questions and at certain times he looked lost. But still he was patient although he probably didn’t remember my case and circumstances unless he referred to his notes. Poor Doctor.

To understand how it is like from the doctor’s point of view, I read this very funny account from another doctor in his blog. Its called “Doctor, do you remember” posted by Dr Bob Sears in the Doctors’ Diaries blog. I can’t seem to find the permalink for that post so here is a little excerpt from it.

“Patients always seem to have a much better memory than I do. I guess that’s because they only have to remember everything that happens to only ONE child. I have to try to remember a couple thousand. Plus, that one child happens to belong to the parents genetically, so I suppose that helps too. But I always find it funny how parents EXPECT me to remember everything that’s happened with their child in the past. I want to come across as a good doctor, and one who remembers everything about every precious little child. But of course that’s next to impossible.

Do I pretend I DO remember and play along?”

Haha. How true. That must be the same predicament my doctor was facing. Anyway, my doctor’s appointment is over now. I’ve got a big bottle of 240 pills to last me for 4 months till I see him again. Duh!

My routine doctor appointment is approaching. I am anxious. I have 1001 questions for my doctor. I am afraid he will chase me out of his door before I am through with them!

One of the most important criterias a doctor should have (in my opinion) is people skills AND listening skills. I hate to see any doctor who treats me as just another patient and can’t wait to get me out of his door so he can see the next patient (after I’ve waited hours to see him). I’ve seen quite a few like that.

I know they’ve got lots of patients and they are pressed for time but at least try to listen and don’t make it so hard for the patient’s to ask a question.

There are also doctors who answer very defensively when you ask a question, as if you’re challenging them. Perhaps it is annoying to field questions for all knowing patients who ask you all sorts and manners of questions from what little they’ve learned from the internet but please understand that patients ask these questions out of ignorance and desire to learn and understand their own conditions and not to challenge you so you don’t have to act defensive.

Of course I’m speaking in general terms and not all doctors are like that but from my own experience of seeing some, quite a number actually have the kind of body language and curt and brief mannerism that makes me afraid to ask any questions. They don’t say it but I can see and feel what they’re thinking and they’re thinking…

NEXT!

So here I am, anxious and worried again, before my next doctor’s appointment. I hope it turns out ok. 

What is an aura?

Many seizures start with a warning symptom known as an epileptic aura. The medical term “aura” should not be confused with the mystical aura that supposedly surrounds a living body, although both descriptions come from the Greek for “breeze” or “breath”.

In some circumstances the aura itself may be the entire extent of the epileptic episode, in others there is progression to a full-blown seizure, according to neurologist Dr Andrew Rose-Innes.

People experience widely varied auras. For some, the aura is emotional: a sudden feeling of anxiety, tension or fear. For others, it takes the form of a specific sensation that only they can feel, such as cooling or warming, a particular taste, or a sound (sometimes musical). In some cases the aura appears as a particular odour, often unpleasant, such as burning rubber.

The aura can also manifest in certain people as a feeling of déjà vu – where people or places appear strangely familiar; or its opposite, jamais vu – where people or situations that should be familiar, appear strange. Frequently, the aura is something that the person finds impossible to describe – simply a “funny feeling”.

The above excerpt is taken from Health24.com. Please read more here.

Well now I’m going to attempt to describe my aura but its not easy. I can only describe it as “that funny feeling”. That funny feeling to me is a feeling of primitive fear. I feel afraid (of what I don’t know. I just feel afraid) plus all the accompanying feeling that someone feels when they feel afraid. I feel cold. I feel fear deep inside of me. I feel my stomach feel funny and I feel that something is wrong with me. That is what I feel.

I remember my very first aura. It happened when I was in my late 20s or early 30s. I had been head hunted for an interview. The interview was supposed to be over drinks in the evening at a hotel. I was in the hotel toilet when I felt this strange feeling of fear. Perhaps its the stress which brought it on but I remember the feeling clearly. That was the first time.

Subsequently over the years, sometimes it goes away for several months and sometimes it returns with what seems to me like a vengeance. It’ll come every other day several times a day and when it does. I feel breathless like I’m out of breath and cannot breathe very well throughout the day. I feel all wound up like a wound up clock.

So far this feeling of fear has preceded my seizures. Many articles I read say that if one has this aura then the seizure may come over the next few minutes or hours. Thats tough! If I have this several times a day what am I supposed to do then. Lie down all day????!!!!

Disclaimer: This tongue-in-cheek explanation of epilepsy is done by someone recently diagnosed with epilepsy so it is by no means accurate. For an accurate description, please consult your doctor!

I noticed that when I mentioned Epilepsy some of my readers commented as follows: “I’m sorry I don’t know what to comment because I don’t know much about epilepsy.” So I’m going to try to explain in my own laymen’s term what it is.

First, I think that the most accurate way to describe epilepsy is to call it a condition or a disorder. It is inaccurate to call it a desease or a sickness or illness because those who have it can be very healthy individuals. What they have is a condition that makes them more susceptible to seizures than others.

According to my doctor, everyone can have a seizure when the condition is right. Someone with epilepsy just has a lowered treshhold for a seizure that is all.

Just what exactly is a seizure then? Well we all have electrical waves in our brains at all times, whether we’re sleeping or awake. A seizure happens when there is a sudden, abnormal electric activity in the brain. This means that I am a very electrifying person! (when my brain merajuk) Geddit?

Many people are afraid of the word Epilepsy because they do not understand it. When I was in primary school I had a classmate with epilepsy and whenever she had a seizure, the teachers would do the wrong thing (I’m going to explain what is the wrong thing in a while) and we all thought she was possessed! That is the social stigma attached to it due to lack of misunderstanding.

There are so many types of seizures that I can’t mention it all here without boring my readers. Did you know that there is even one that makes a person sing, dance, laugh or cry and remove their clothes in public without knowing it afterwards? It depends on which part of the brain is affected. It can be rather embarrassing which is why it is easy to get depressed, be afraid (of not knowing when you will have the next seizure) and have a lowered self confidence and self esteem as a result. So if you are helping someone with epilepsy, please realise that these are the emotions they have to deal with. Speaking of which, I am not going to let these emotions control me.

Did you know that there is another type of seizure called absence seizure which often happens in childhood which just makes the person stare in space for a while and waking up afterwards without realising what has happened and people just think that the person is not paying attention in class and has poor results from the moments he/she misses out? Epilepsy is not easy to diagnose and some people go on for years without being diagnosed.

When we are dealing with something we do not understand, people are afraid to talk about it and so they don’t sometimes because they don’t know what to say. Take for example my friend firehorse. She had written a post dedicated to me on her blog and she got 10 measly comments when she usually gets about 30 or so.  I take this to mean that two thirds of her readers are afraid or rather uncomfortable to say anything. Lol!

Some people have an aura (a brief electrical discharge in a localised part of the brain) which some would call a warning sign or a partial seizure before a bigger or generalised seizure. I will talk about my auras another day. I’m lazy today.

Ok. Now comes to the most important part of my post. How do you help someone in a seizure. I will just point out what I think is the most important thing not to do.

Most important things not to do to help a person in a seizure.

1. If its in a public place, don’t stand around oggling and being a busybody. If you don’t know how to help, just look if you must then move on!!! Don’t crowd around the person. They need the air and you don’t want to embarass and confuse them further by standing around looking.
2. Don’t try to stop the seizure. You can’t. Just make sure the person won’t hurt themself by moving hard or hot things around them. After the seizure turn the person to the side to prevent them from swallowing their own vomit or inhaling fluids or acids from their stomach which could cause pneumonia or choking, something that could be more dangerous then the actual seizure itself.
3. Don’t put any object into the persons mouth to “prevent the person from swallowing their tongue”. They won’t. In fact if you place a hard object like a spoon for example it could cause harm and injury to their jaw or teeth or if you place a soft object it could cause them to swallow it and choke. (This was what my teachers did to the poor girl in school. They always tried to push a spoon into her mouth.) If you want to be a hero and place your fingers into their mouth it would probably be bitten, so don’t.
4. If its in a public place, after the seizure, comfort and speak to the confused person gently and ask if they need help to get home etc. DON’T take this as an opportunity to steal their wallet!!!!
5. Don’t wake a person from their deep sleep after a seizure and don’t offer any food or water until they are fully awake.
6. There is no need to call and ambulance and send the person to emergency unless the seizure does not stop for 5 minutes or the person stops breathing for longer than 30 seconds in which case in could be life threatening and medical help is required.

My husband asked me how I would feel if I had a seizure in a public place and I told him that I would not feel anything because I don’t remember it afterwards. I only remember bits and pieces but I think it would be harder for him to handle. He would have to handle me, the inevitable busybody crowd plus make sure our two young kids are safe. (Which is why I stressed No: 1 as Don’t stand around oggling if you can’t help). Thats all I want to write for now. I want to go and do my exercise now.

Some of the self help techniques I am trying out for myself, include exercise, deep breathing, relaxation, getting proper nutrition and sleep, yoga (If can’t go to yoga, yoga will come to me. I can’t go to a yoga class so I bought a begginers yoga tape instead. Hehe.), awareness (reading and recording down), taking my medication with timeliness and working with my neurologist together. Hopefully I will become seizure free then.

This is a rojak post. I just want to get some stuff off my chest.

1. I have been on the medication for more than a month now. At first it made me so sleepy I slept on everybody’s couch and I’m the type who can only sleep in bed not on couches. At first it gave my right eye a twitch, I think.
2. I’m afraid to stand in front of my dressing table and look in the mirror now because it gives me bad memories. Memories of standing there one moment and losing conciousness the next.
3. I feel pressured to sleep and my husband pressures me to sleep too. And the more pressured I am, the harder it is to sleep. When I don’t have enough sleep eg sleep late and wakes up early I feel extremely worried and try to make up for it the next day and when I can’t, I feel even more worried and it gets harder to sleep. Aarrrggh! I hate it. Theres got to be more to life than just sleep! I also feel guilty when I have some free time and I don’t use that to sleep! I believe that lack of sleep is a trigger for my seizure so its a vicious cycle. In this case fortunately the medicine and its drowsy effects helps occassionally.
4. I have ordered 3 books on epilepsy to read but they have not arrived yet.
5. I feel more relaxed now and like to pay more attention to the  people who are important to me, mainly my family.
6. I complained about some of the potential side effects of the medication like weight gain, acne etc. My husband says they are only small things but I can’t help it. I am woman and I am vain. I joke with my girlfriend that if I have a seizure I already look quite awful, I don’t want to look awful and be fat and pimply at the same time. You won’t understand this unless you are a woman. Lol!
7. I am saddened that this means that we can’t have the 3rd child we both want.
8. I am back to doing my exercises now. Perhaps I shall get more exercise videos so I can do more routines. Hubby does not understand why I need new exercise tapes but then he is a man. Lol!
9. I am afraid to walk down the stairs or take a bath alone or boil water or handle a knife alone or be in public places alone. Perhaps I shall get hubby to accompany me when I take a bath. *wink wink* But then another side effect of the medication is lowered libido. Hmmmm……
10. I wish I could drive again. I haven’t driven in 2 years and this is a big loss of independance to me. Looking at the bright side, I am now “si tau poh” and gets driven everywhere I go!

Ok. Enough ranting for the day.

I was at a gaberment hospital and I was impressed by the equipment, the service was reasonably good and the price cheap.

I only have one grouse, the long waits and not being able to get to see the doctor I want or my regular doctor because of the way the system works.

When I was at the hospital I asked for my doctor or rather my hubby called him to go and see me but he said kenot because thats not normal procedure. He wasn’t making his rounds then so he had to let the others do theirs according to procedure. Eventually he was kind enough to come see me but only briefly.

Subsequently I was given an appointment to see him about one or two weeks after discharge. I waited for 2 1/2 hours along with two restless kiddoes but when it came to my turn or almost my number, he came rushing out and told me he had to go for a meeting, he told me to just take the medicine prescribed and see another doctor.

Hmmm… when I complained to my girlfriend about this she said “Eh didn’t you know? You must give some gift basket or etc lah to get to see the loctor you want. Better learn lah.” to which I replied “Yah hor, my aunt used to give some angpow to the loctors and nurses she saw and she always got called ahead of the others but I don’t know how to do things like that. I’m just too straight.”

Hmm….. well, I’m not quiting on the doctor yet because I don’t blame him. He is really a good neurologist and when I do get to see him, he takes his time to explain things to me and is very patient. Its just the system. Overworked and underpaid I guess. I wish things could be a little better but its a lot improved now I think. Like I said at the start, the hospital equipment, the service, the kind nurses, even the food and the food catering service was reasonable (though I didn’t have much appetite) and of course the subsidised hospital price, they’re all good. :) 

Thanks to all who came by and dropped encouraging comments. I’m done venting for now. Did I sound like I was about to crumble or fall to pieces? Haha. I hope not. Life goes on and so must I.

I have taken some preventive measures for safety but these are not foolproof but is anything ever? After the first seizure two years ago I arranged for a part time helper to come in a few times a week. Now she comes in daily for more hours each day. So now I am officially a full time lady of leisure. Hahaha. I can have more time to play with and hug my kids.

Hey, this should make me a stronger, better more loving person but I find that I am still the same old complaining, impatient, grouch. Oklah, bagi chance lah. Half the time I feel sleepy or drugged from the medication. The other half, I feel fearful and frustrated when my sleep gets disturbed by the kids or the spouse and so I show my black face and frustration at them.

But I know I must not let the psychological fear of getting a seizure become worse than an actual seizure itself so I must learn to control it. Otherwise the family will suffer too. This condition is hard not only on the individual who has it but on their families too.

The poor spouse who comes back tired from work now does not have anyone to manja him. He only gets a tired, fearful wife whom he feels he must constantly watch over. Hmm… I hope we can get over this stage and move on the way we were before.

The kids too must not pay the price of a tired, impatient mum but then I’ve always been a tired, impatient mum so theres really no difference. Lol! 

Hubby says I should get back into easing into an exercise routine which he feels is good for me and so I shall. I am also trying to take it easy and relax more but that feels so strange. I realise that I have always been rushing around that I have forgotten how to relax! So now, I really should learn to listen to some relaxing music, read some magazines, paint my nails but it feels really strange to be doing these things. I don’t even have a good music player and nice CDs although I love music.

I must learn to relax more, exercise, sleep better, eat well etc. But then so must all of you reading this. Don’t take your good health for granted.

I’ve been diagnosed with epilepsy at age 41. Isn’t it funny the kind of surprises life throws at you?

I had my first seizure 2 years ago. At the time the neurologist told me that he was not concerned. One seizure does not make you an epileptic, he told me.

1 1/2 years and a second seizure later, he told me, the medication to control seizures is very strong so its ok for you to wait and see first since the seizure is so infrequent. It might not be necessary for you to take a medication with many side effects to control something that happens infrequently. Both seizures occurred in bed so there was even less reason to take any medication for it at the time.

The recent seizure incidents took place 1/2 year after the last so looks like theres no escaping medication and its side effects now.

I’m now on anticonvulsant drugs. It made me feel so sleepy the first few days I was on it. I’m less sleepy now but still feel drugged, woozy, spaced out or dazed at times. I’m told that these effects will go off in a couple of weeks. Drowsiness is just one of it, there is a long list of other possible side effects.

I love things natural and hate pill popping but now I have no choice but to pop pills twice a day. I hope it helps to control the seizures as these things work differently on different individuals and its so subjective. They would normally start you on the lowest dosage and work their way up if it doesn’t control the seizures so I can never be sure….

I feel so lost. I sit here thinking of what lifestyle changes I have to make to be on the safe side. My husband has asked me to read up as much as I can about my condition. I would normally do that, ie read up as much as I can because with understanding and knowledge, comes better management but at the same time I’m afraid to read. The more I read, the more frightened I become. Maybe I’m just in denial.

I’m lost and I’m worried. Worried about the children. The people around me tell me that the experience appears more traumatic for me than the kids but still I worry even though they appear fine and I worry that if I fall unconcious they may get into mischief on those times when no one is around. I have arranged for someone to be around most of the time but its not possible for that all of the time. I have also stopped carrying or lifting the kids because the last thing I want is for someone else to be injured when I awaken. I’m also worried each time I walk up or down the stairs. So many ifs… and what ifs…. I think I’m thinking too much and should just go and have some fun with the kids now and stop thinking. There you see. I told you I am in denial. I just don’t want to think about it. And when hubby talks to me about his ideas and suggestions just because he is concerned and wants to talk to me about it, I almost want to get mad at him because I don’t want to think about it. I don’t want to face my greatest fear.