Hi all
I've very recently been diagnosed with simple partial seizures (deja vu). They do not bother me, happen rarely and only after weeks of sleep deprivation (think juggling wife, mother, working and post-grad study).
Twice (once a month ago, and once 11 years ago) I had a deja vu and lost consciousness for about 20-30sec. Both these episodes happened after MONTHS of prolonged sleep deprivation (think 4-5hrs each night at best). I saw a neurologist a few weeks ago who diagnosed me with epilepsy and immediately wrote out a script for Tegretol with little regard for the cause of the seizures.
My main concerns with this approach are:
*The prolonged sleep deprivation was not taken into account at all - he gave us the impression he thought I had just had a couple of late nights
*He described Tegretol (400mg) extremely quickly
*No side effects were discussed
*No history was asked with respect to liver/kidney health etc
*No precautions to be taken while taking the drug were discussed
*Directions on how to take the drug were not on the prescription (he explained verbally about starting off on 100mg etc, but whilst I was listening at the time, I also made the assumption that they would be on the prescription)
*No blood tests were taken or discussed to establish any baseline data prior to taking Tegretol
*No mention was made of having blood tests at any time to monitor the level was mentioned
Once we had bought the Tegretol from the chemist we realised that there were no instructions with it other than 'Take as prescribed by your doctor'. We also then had the opportunity to read the information that came with it. I sent some detailed questions via email to this neurologist including:
*how to take it,
*how is the dosage determined,
*given this has only happened after extremely prolonged periods of sleep deprivation I will be changing my routine to a regular 10pm bedtime, what is the likelihood of coming off medication altogether
His response was to the first question was to give directions but increase the dose to 600mg without telling me, nor explaining why (I queried this immediately and he brought it back to 400mg - it was at this point he said 'Oh, and you should have a serum level done in a couple of weeks' - he wouldn't have mentioned this had I not continued with the questioning).
The second question was ignored
The answer to the third was "The medication should allow you to lead a normal life. I wouldn't worry about a strict curfew." Given sleep deprivation is a known trigger, I am angry to say the least that he has responded with that answer and has completely ignored the fact that my 'normal life' up until now has been one where sleep has been very low on the priority list. I cannot emphasise this too much.
To try and shorten an already long post (sorry!) I reacted to the Tegretol, developed mouth ulcers, my body felt like it had been hit by a train and psychologically it was awful. My saving grace was being able to hold onto the logical and practical me, telling myself over and over "It is just the drug, it is not you, it is just the drug, it is not you." I am lucky to have an amazing husband and some close friends who were able to keep me hanging on to the shred of myself that was left.
I'm now off the Tegretol after only a couple of weeks. I am keeping to my earlier suggestion to this neurologist of adjusting my lifestyle and getting a normal night's sleep every night for three months and see what happens. If I'm medicated immediately I won't ever be able to see if simply getting the right amount of sleep will help.
Anyway, that's my story to date. I'm sorry to have such a long initial post. The whole 'medicate first, ask questions later' concept really concerns me.
Cheers, Pippa
I've very recently been diagnosed with simple partial seizures (deja vu). They do not bother me, happen rarely and only after weeks of sleep deprivation (think juggling wife, mother, working and post-grad study).
Twice (once a month ago, and once 11 years ago) I had a deja vu and lost consciousness for about 20-30sec. Both these episodes happened after MONTHS of prolonged sleep deprivation (think 4-5hrs each night at best). I saw a neurologist a few weeks ago who diagnosed me with epilepsy and immediately wrote out a script for Tegretol with little regard for the cause of the seizures.
My main concerns with this approach are:
*The prolonged sleep deprivation was not taken into account at all - he gave us the impression he thought I had just had a couple of late nights
*He described Tegretol (400mg) extremely quickly
*No side effects were discussed
*No history was asked with respect to liver/kidney health etc
*No precautions to be taken while taking the drug were discussed
*Directions on how to take the drug were not on the prescription (he explained verbally about starting off on 100mg etc, but whilst I was listening at the time, I also made the assumption that they would be on the prescription)
*No blood tests were taken or discussed to establish any baseline data prior to taking Tegretol
*No mention was made of having blood tests at any time to monitor the level was mentioned
Once we had bought the Tegretol from the chemist we realised that there were no instructions with it other than 'Take as prescribed by your doctor'. We also then had the opportunity to read the information that came with it. I sent some detailed questions via email to this neurologist including:
*how to take it,
*how is the dosage determined,
*given this has only happened after extremely prolonged periods of sleep deprivation I will be changing my routine to a regular 10pm bedtime, what is the likelihood of coming off medication altogether
His response was to the first question was to give directions but increase the dose to 600mg without telling me, nor explaining why (I queried this immediately and he brought it back to 400mg - it was at this point he said 'Oh, and you should have a serum level done in a couple of weeks' - he wouldn't have mentioned this had I not continued with the questioning).
The second question was ignored
The answer to the third was "The medication should allow you to lead a normal life. I wouldn't worry about a strict curfew." Given sleep deprivation is a known trigger, I am angry to say the least that he has responded with that answer and has completely ignored the fact that my 'normal life' up until now has been one where sleep has been very low on the priority list. I cannot emphasise this too much.
To try and shorten an already long post (sorry!) I reacted to the Tegretol, developed mouth ulcers, my body felt like it had been hit by a train and psychologically it was awful. My saving grace was being able to hold onto the logical and practical me, telling myself over and over "It is just the drug, it is not you, it is just the drug, it is not you." I am lucky to have an amazing husband and some close friends who were able to keep me hanging on to the shred of myself that was left.
I'm now off the Tegretol after only a couple of weeks. I am keeping to my earlier suggestion to this neurologist of adjusting my lifestyle and getting a normal night's sleep every night for three months and see what happens. If I'm medicated immediately I won't ever be able to see if simply getting the right amount of sleep will help.
Anyway, that's my story to date. I'm sorry to have such a long initial post. The whole 'medicate first, ask questions later' concept really concerns me.
Cheers, Pippa