New to the forum, new to epilepsy

[Pippa]

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

[epileric]

Your neurologist sounds like one I had a long time ago. He would keep upping my meds but not tell me why or put me on meds that had side-effects that made me unable to function. Too bad getting me to function wasn't his goal, just to stop the seizures. My personal advice is run!

Personally though I would find a new neurologist & on the first visit ask them questions that would give me a better idea of their intent. Also be aware of how much respect they give your questions.

Your seizures may not bother you too much but realize that each time you have a seizure it increases the probability of them getting stronger & more frequent.

Hopefully you can find a good neurologist.

[RobinN]

Welcome to CWE Pippa,

My daughter was also put on Tegretol as a first trial. Her side effects were vision loss.
You are very smart to begin to question your lifestyle prior to the seizure. I did but was given false information by the neurologist. I still did not know enough about seizure disorders, and we did a trial of 4 meds. They ALL made my daughters seizures worse, and spiraled her life out of control. She was in HS at the time, and the emotional, social consequences were not pretty.

My daughter had over 50 tonic clonic seizures, and now after making nutritional changes, and doing neurofeedback therapy she has not had a seizure in over 10 months.

I too was told that after 2 seizures it was likely that my daughter would have to be on medication for life. I followed conventional medicine for about 3 yrs, and then realized that all it was doing was creating a patient dependent on medication. I am not saying that path isn't perfect for some. However, with a little digging and careful consideration, following contemporary alternative therapies, the cause can be found.

Keep a journal of activities, hormonal changes, nutrition (or not), and you just might be able to connect the dots. Work on the whole body health, and you just might be able to raise your seizure threshold. I hope the sleep helps you, please also consider nutrition and supplementing where necessary, for brain and body health. Trust your gut instincts - there is a greater connection between gut and brain health than most doctors will discuss.

[Nakamova]

Hi Pippa, welcome to CWE!

I hope avoiding sleep problems does the trick for you. As Robin says above, keeping a journal can help indicate any other factors that may be lowering your seizure threshold. There's great info here: Proactive Prescription for Epilepsy

It sounds like you neurologist was a stressor all by himself. If you need to see a neurologist in the future, don't hesitate to seek one whom you can trust.

Best,
Nakamova

[valeriedl]

As said I'd keep a seizure diary.

I keep more of a "diary" marking down from day to day what I did. I have little calander that I can keep in my purse where the "day slots" are big enough to put details in.

I mark down things like going to the the dr and for what reason, grocery store, eating out, shopping, going out with friends or family, big events (example: movies, concerts, parties exc), get togethers for family events (parties, holidays) things like that and anything else out of the ordinary.

I'll mark down if I was sick, tired alot. If I had a seizure or think I did, I'll write down how long it lasted what I did during the seizure and things that happened after the seizure. I'll usually get a very bad headache and be tired. If I did have a seizure then I'll highlight it so it's easy to find in the calander. My neurologist had told me that this has been very helpful for him. Just make sure you take it with you to your appointment with your neurologist so the two of you can go over it together.

[Pippa]

Thank you all for your welcome and your suggestions.

I've read that the probability for seizures can increase Epileric. In my case (to date) I have been having the deja vu experiences infrequently for over 20 years. By infrequently I mean only a few each year, if that, and only with the prolonged lack of sleep. Unfortunately I haven't kept a diary before because they have never bothered me, and I figured I understood what was triggering them. I guess that's the trouble with epilepsy isn't it? It's all such a big unknown as to when the next seizure is going to turn up and how it is going to present itself.

So many of all your comments struck a chord. Robin I feel the same with respect to being dependent on medication - in my case (certainly at the moment) it would take someone who has had very, very few seizures, and only two in over 20 years where I have lost consciousness, to someone who if they are caught without their medication for whatever reason, the risk of a seizure increases. To me that doesn't make sense.

It will be interesting to see what happens over the next couple of months. I am keeping off the road as a matter of course while I am trialling getting a decent amount of sleep. I view sleeping in the same way I was taking the Tegretol - I set the alarm on my phone twice a day to remind me to take it religiously. Similarly I accept that I have to down tools by 10pm and be in bed. A very hard habit to break after four years of post-grad study... good thing this blew up at the end of my course and not at the beginning!

Thank you for the link to more information Nakamova, and thank you for sharing how you keep your diary Valeriedl. All this information from people who actually live with epilepsy instead of just seeing it in their patients is incredibly helpful and appreciated.

Cheers, Pippa

[RobinN]

I know with migraines, it was suggested to keep the same sleep pattern. Up every day at the same time, and figure out the number of hours of sleep that you need . I figure if they have found this to be helpful for migraine, it would be helpful for health in general.