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My experience with Topamax

December 5th 2012 01:38
My specialist prescribed Topamax 25mg once per day as a starting dose to combat the symptoms of my balance disorder. I stopped taking my last medication due to weight gain and was ambivalent about the same thing happening again. I have lost 5 kgs of what I gained and have another 5 kg left to go. Regardless of this effect, the last medication worked. The only other side effect I had was intense fatigue as my body got used to the medication in the first month. Sibelium is it's name... possibly a good choice if you're not susceptible to weight gain or don't mind and it's the medication that your doctor thinks is best for you.

Topamax is evil in comparison.

Day 1 – Intense fatigue. Been there, done that, I can handle it. I know it passes.
Day 2 – Sleep, eyes are heavy, must rest.
Day 3 – I managed to wake up before 9am so I can get to work on time. That's a plus, right? Eyes are heavy, very tired, some nausea, some lower abdominal pains. Nothing too horrible yet.
Day 4 – Water, I need water! Someone give me water! What do you mean I've already had 7 bottles of water, I need more. I am dying of thirst here!
Day 5 – Thirsty, my mouth is dry, I have pins and needles in my hands and it took me three attempts to say the word “reunification” in court today.
Day 6 – Thirst is a little more settled but by no means gone, tired, my eyes feel heavy all day and forget operating machinery or driving like the label warns, I can't even remember how to do simple tasks, my balance is worse than ever.
Day 7 – Small thing goes wrong. Stress leave!!!!! Irrational much? That's the last thing I would normally do lest my career suffer for it and here I am taking all the leave I was saving up for real holidays and heading to my parents to relax and de-stress.

Day 8 – Small windows of functioning here but it's the weekend so I don't do much and can laze around and do nothing. Eyes are heavy, I manage to do some small tasks.
Day 9 - Manage to have some breakfast out and then laze around the rest of the day. Oh, and pack.
Day 10 – Balance, what's that? Evidently enough of the drug has built up in my system now to have me go completely around the bend. I am shaky, dizzy, disoriented, confused over simple tasks (how do I unlock my work computer again? Yes, I know I do it every day, several times a day but here I am trying to figure it out). I think maybe I need to eat. I send out a colleague to buy me lunch because I'm too unsteady to walk anywhere. I manage half a sandwich and a few cubes of melon from the fruit salad. Clearly wasn't dying of starvation. I feel dehydrated, I have had a good amount of water, not the excessive amounts of the previous days because my cloudy mind forgot my water bottles at home and I had to make do but certainly not amounts insignificant enough to cause dehydration.

Feelings of panic sink in. “I am going to pass out and I am flying home today and the airline will see I am sick and I'll delay the whole flight and it'll all be my fault!” Did I mention irrational? I call the pharmacist and discuss the evils of Topamax, to my delight, he agrees with me that from what I'm describing I don't seem to be tolerating it. I see the doctor on the off chance it's my blood pressure causing the craziness that is today, it's not. He tells me to wean myself off Topamax. I write a desperate email to my specialist telling him how horrible this med is making me feel and follow it up with calling and leaving a message with his receptionist.

Regardless of all that, I manage to get on the plane, sans Topamax and the prescription as well as my favourite jeans. Seriously? Two weeks away and I didn't pack my favourite jeans? My mind clearly isn't working anymore. Not that I'm not glad to not have Topamax with me, I reluctantly make an appointment to see a doctor to find out whether I need to take more of the evil stuff or whether I really can stop taking it, even though I'm sure the specialist will come up with some way to keep me on it. Must stop the madness!

To my delight, the GP says no need to wean off Topamax as I was only on it for 9 days and on a low dose. I have to think about my home and mobile numbers when the receptionist at the doctor asks to clarify my details. I must be losing my mind. I knew I was dopey on this medication and perhaps it is a blessing I am not at work so I have time for my mind to clear and my memory to improve. I hope.

The specialist still hasn't called. You'd think the message I left with his receptionist would have been enough to make him call me. Clearly not. Specialists - brilliant, but too busy to care.

Final remarks on Topamax, I am sure it works for some, but it certainly did not work for me. These side effects are worse than the problem itself and anything affecting cognitive functioning is a problem in my book. Be mindful of yourself and how this affects you. Do what is best for your body.

Rare Disease Day - 29th February 2012

February 24th 2012 06:28
In light of the upcoming day and my own struggle with a rare disease, this is my story.

In 2008, I was living away from home, often on short haul flights to go back home and see my family. Every few months I was flying back and forth. I also went on a cruise which had to be one of the worst 4 hours of my life. I was glad it was over when it finished but what I didn't know was that it was not was far from over.

Thus began my journey with dizziness, or as I put it the 24/7 rocking sensation which would take over my life. Fatigue, nausea, blurred vision, ear fullness, ringing in the ears, the ability to physically see myself rocking when I stood still in front of a mirror, anxiety and the small glimmer of hope that would come from driving when things felt more normal. The car's motion helped my own motion to calm down.

I went to the doctor, getting blood tests and CT scans. Nothing. Then followed the Ear Nose Throat Specialist (ENT) who also found nothing. All the while I felt like I was walking on a moving surface, trying to figure out why I felt like I did while maintaining my part-time study and full-time job. I thought I was losing it, with the rocking came the intense anxiety. It felt like I was always rocking, I tried to maintain my balance with the world going by in a haze. My limbs felt numb, the doctor told me all of my body could not feel numb, it was impossible. Yet, due to the anxiety as I worked out later, it did. During periods of greatest anxiety, my face and head felt numb too, I thought I was losing it.

I felt disassociated from the world around me, I would sit on the bus coming back from work and feel completely different and alone from the world around me. It was a constant battle going to work, but I did, though I was always exhausted mentally and physically by the end of each day.

Eventually came the referral to a neurologist, I had to wait months to be seen. In the mean time my doctor had prescribed Serc, I felt it didn't really help but it helped to take the edge off at times. I kept taking it in the hopes it would end the suffering.

One day I woke up and it was all gone, I was euphoric, my vision was sharper, the rocking was gone. I spent a blissful day at the beach, unburdened. That night I woke with vertigo, culminating in a 2am visit to the ER. I was given Stemetil, though my stomach was much too used to the motion by then to feel nausea and sent home. No answers, though I did receive a referral to see a neurologist, much faster than my doctor's referral as it came from the hospital itself. Just days later I was seen, all testing done by the neurologist was normal again.

10 days after the initial attack I woke with vertigo again. Another trip to the ER which ended up being a full day. I had another CT with contrast this time, and spent the rest of the day in hospital waiting for two neurologists to look at my results. I was terrified something would be found despite having had a clear CT before, but by this stage I was sure I had something akin to a brain tumour. The results came back clear and I was sent home. However I had another referral, this time to see a neuro-otologist, Dr Halmagyi at the Prince Alfred Hospital in Sydney. I also had an MRI appointment and balance tests completed.

The MRI was quite terrifying for someone with some claustrophobia but I got through it. The balance tests were also difficult and caused more dizziness but at least it was for a good cause. Dr Halmagyi did some more tests, all of which came back normal, looked at my MRI which was also normal and finally said the words I'd been waiting for...a diagnosis.

The diagnosis of MDDS (Mal de Debarquement Syndrome) did not distress me, in fact it gave validation that I wasn't going insane, it gave me a sense of relief that I had finally received a diagnosis (and that diagnosis was not a brain tumour!). I remember the day and moment clearly - 9 June 2010, more than two years after the symptoms had started.

MDDS can best be described as on the website:

Mal de Debarquement Syndrome (or MdDS) is an imbalance or rocking/swaying sensation often both "felt" and "seen" by the sufferer that occurs after exposure to motion (most commonly after a sea cruise or a flight). Although other forms of travel have been known to trigger it.

After alighting or "debarking" (debarquement) the traveller continues to feel "all at sea", unable to get their land legs back. Although most travellers can identify with this feeling and do actually experience it temporarily after disembarking, unfortunately in the case of MdDS sufferers it can persist for many weeks, months, even years afterwards.

The symptoms are with you constantly, they never leave, nor can they be alleviated by any anti-motion sickness drugs (eg Stemetil, Serc etc)

"Like trying to constantly walk on a mattress or trampoline" is a good description of the main symptom, which is usually most pronounced when the patient is sitting still; in fact, the sensations are usually minimized by actual motion, for example driving.

Then started the period of trying various medications to see which would work. I tried two different ones to no avail, before being started on a third, Sibelium, a migraine medication.

Two months down the track something had finally worked, my dizzy days were few and far between and I had more, as I termed them, good days to bad days.

I've had one vertigo attack since which was a few months ago, but it had been two years in between and if I have to put up with a few hours of vertigo spaced years apart then that's better than the constant motion prior.

The only problem is some slight weight gain as a side effect of the medication, now instead of being a little too skinny I am more 'normal'. Weighing up, pun intended, the benefits of the medication I am prepared to deal with a little weight gain. The lifestyle changes associated with my condition would have caused some slight weight gain also.

I still fly regularly and in a few weeks am doing a long-haul flight to Europe. Obviously as an MDDS sufferer this causes some anxiety but I can't let that stop me and I will fight to have a normal life, including travel, despite MDDS.

Rare diseases, and diseases such as MDDS can be silent diseases, the only person who knows is the sufferer and that can be a lonely journey when on the outside, everything appears fine.

MDDS thankfully is not a death sentence. While there is no cure, symptoms can sometimes resolve themselves in patients and when the day comes that I am no longer medicated, I will see if my own symptoms have resolved themselves.

Reach out to others on Rare Disease Day and help support sufferers!

Flood Levy

July 2nd 2011 01:23
Not that Australians don't already pay a huge amount of taxes compared to other nations, there's also a new flood levy to pay for rebuilding after the Queensland floods. While we're at it, why don't taxpayers pay for other natural disasters too, why leave it at floods?

A natural disaster strikes so naturally the taxpayers have to pay for it. Meanwhile Julia Gillard is getting a salary raise and Australians are still battling the rising cost of living with the same salary they were getting ten years ago along with a flood levy to make tax season even better.

Give tax payers a break Australian Government, take the funds out of your overblown salaries, not the hard-earned cash of citizens!

Julia Gillard has finally made one right move and is talking about introducing new rules in relation to welfare payments to young mums. About time someone thought about the taxpayers funding irresponsible teens and their babies!

There are 1100 teenage mothers in Queensland at the moment, 80% of which have not finished school and only 8% working. What about the other 92%, sitting back receiving welfare payments while taxpayers fund them from their hard-earned dollars

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Dancing on Dangerous Ground

March 13th 2011 11:22

I am getting my Irish on in preparation for St Patrick's Day and what better way than to watch an Irish dance show. No, I'm not talking about Riverdance, but a show named Dancing on Dangerous Ground. At its helm, world famous Irish dancers, previously the lead dancers in Riverdance, Jean Butler and Colin Dunne. Two superb dancers and they showcase their talent in Dancing on Dangerous Ground, where the ground is anything but dangerous. Unfortunately the show played in London and New York before financial difficulties shut it down, though I can't see why, this brilliant show deserved a much longer life than it got

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Natural disasters

January 23rd 2011 01:47
The disasters around the state of Queensland have been literally one right after the other. Never have I seen a state so submerged in water and the disaster zone so widespread. Queenslanders will come out of this though with the same spirit, and the amount of people that have been helping those who have lost their homes and businesses is astounding. We will rebuild and our spirit will remain positive, with that Queensland sense of humour intact despite the horrific events that have taken us from 2010 to 2011!

The sense of comradeship and those helping others they had never met before, yet united in the recovery effort, instills a sense of pride in one's people and the knowledge that nothing can deter kindness and hard work in a disaster.

Common sense

October 24th 2010 03:13
There's a story on the local news today about two sisters dying while they were riding on the bonnet of a car. Where will common sense enter into people's minds? A completely preventable accident fuelled by stupidity. How horrible for their families, that these two women did not think about their actions. When the 18 year old girl fell off the bonnet, her 30 year old sister went to help, being hit by another car in the process. I don't mean to be insensitive but doesn't a 30 year old at least have more sense than to be doing what she did, riding on the bonnet of a moving vehicle? The 30 year old woman's two children were in the car and clearly would have witnessed what happened, what a shocking event for two young children to comprehend, particularly when they're older and realise just how preventable it was.

The drivers of both vehicles have been charged, which is somewhat surprising, considering that the other driver had no involvement other than striking the woman when she ran to help her sister. Ovbiously he caused a death but the surrounding circumstances of the accident should also be considered. I wonder if he will get the same or similar punishment to the 16 year old driver of the car the women were travelling on

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Kiesha Abrahams

August 14th 2010 00:51
What a sad story this has been and as each day goes by I think it seems clear she won't be found alive. My heart goes out to her family...except for the mother and stepfather, I don't believe the fake tears or statements of innocence. If they are the only ones who have seen Kiesha for weeks then it follows that they know more than they are saying.

Allegations have been made against them and vehemently denied, but the question remains, and the police are right to question the parents and search their house, something has happened to that poor little girl, only that can explain this now almost 2 week disappearance. Whether there is a family involvement or not, it is under investigation and while the public may try to not pass judgment or entertain thoughts that her mother and step-father are involved, it's hard not to, when so many questions remain about her disappearance.

Dizziness diagnosed

June 12th 2010 05:42
After many visits to the GP with symptoms that only baffled them, trips to the ER, followed by ENT and neurological appointments, I have finally been given a diagnosis for the dizziness which has plagued me and changed my life during the last two years.

The diagnosis two years later was actually a relief. Being diagnosed with something is a strange thing to celebrate but the uncertainty and confusion of the last two years was much worse

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Arranged marriage foiled

June 3rd 2010 01:01
An arranged marriage has been foiled by the 17 year old girl herself, who called in the Australian Federal Police (AFP) in a bid to save herself from being sent to Lebanon to partake in the marriage.

Her mother had booked her a flight from Australia to Lebanon and her father and stepfather supported the marriage. The frightened girl, in a move that took a lot of courage, considering the pressure her family must have been putting on her and the repercussions of reporting it, called the AFP. Having heard about the airport watch list, she wanted to put herself on it and in this way not be allowed to leave the country

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