Simple partial seizures - temporal lobe epilepsy - medication

Hiya,

I have temporal lobe epilepsy and have simple partial seizures. I've been having them for 3 years now in clusters. I went to the doctors back in 2011 and was misdiagnosed with anxiety disorder because just before a seizure I feel an intense flash of fear (aura). I now know that it is actually epilepsy but I haven't been back to the doctors as I am worried about several things. The first thing is medication.

I have heard terrible things about epilepsy meds! Horrible side effects like suicidal thoughts, mental impairment, weight gain, personality changes, anxiety, depression etc. I really do not want these side effects and am so scared of going to the doctors and being put on these tablets.

Has anyone got any experience of a medication with low side effects or does it depend on the person? Or is there any natural medication or diet? What would happen if I left it untreated? To be honest my seizures are clustered and no not cause me a great deal of stress although I have read that the seizures can damage brain cells and make you stupid?! Is that true? I understand that It is unsafe to drive but luckily as I am in university I cannot drive for another 4 years anyway.

Thankyou

Reply 1

Anonymous #1

Hi

I take it the doctors did officially diagnose the epilepsy?

Medications are all different. They can cause no side effects, some side effects or many side effects and people respond to them differently. The doctors will find one which works for you and the dose will be as low as possible. Enough to (hopefully) control the seizures but low enough to reduce the side effects.

A trip to the doctors is definitely worth it. It is likely that you may only need 1 type of medication and the dose will be low. And the drug can be changed if it doesn't work/causes too many side effects. Generally the lower the dose, the fewer the side effects. But like I said, it differs from person to person!

From my experience epilepsy can change or remain the same but I highly recommend receiving treatment. As you've already mentioned, you cannot drive if you have uncontrolled epilepsy. However once you have been seizure-free for a year you can reapply for your license. Driving is one of the barriers that medication can help you overcome.

I'm no doctor so best to seek advice from the profesionals :smile:

Good luck making your decision.

Reply 2

River85

Original post by charlyswahn

I have heard terrible things about epilepsy meds! Horrible side effects like suicidal thoughts, mental impairment, weight gain, personality changes, anxiety, depression etc. I really do not want these side effects and am so scared of going to the doctors and being put on these tablets.

What makes you so sure you have epilepsy, and your seizures arise from the temporal lobe? Epilepsy, and neurological conditions in general, can be very complex.

You need to be referred to, and diagnosed by, a neurologist before even considering taking medication.

Few anti-epileptic drugs can cause mood and behaviouril changes, but then epilepsy itself is assocated with personality and mood disorders (see the alleged "Epilepsy personality"). Newer AEDs often have more benign side effect profiles.

I had no side effects on Carbamazepine (a slightly older AED drug) or Lamotrigine (a newer drug). In fact the Lamotrigine acts as both an anti-manic drug and can also improve mood, so actually helped to stablise my mood swings (depression and hypomania).

Although I can't tell you to take medication, and whether you chose to get diagnosed and treatment is ultimately your decision to make, the effects of uncontrolled seizures will likely be more damaging than any side effects from medication.

Uncontrolled seizures don't "make you stupid" as such, but they have been linked to nerve cell damage, cognition difficulties (problems with memory) and behavioural changes. You also may find that your seizures do increase in frequency at a later stage in your life and become more of a problem. Just because they aren't a problem now doesn't mean they still won't be in the future.

It can take several months, sometimes even over a year, to get an official diagnosis and begin medication. So be aware of this.

(edited 10 years ago)

Reply 3

Kabloomybuzz

I would go to the doctors and talk to them about your worries. If you are prescribed anything, do some research before getting it filled. Just because a doctor has given you a prescription, it doesn't mean you have to go and get the medication if you are not comfortable doing so. You really have nothing to lose from speaking to your doctor.

Reply 4

River85

Original post by Kabloomybuzz

Ideally the neurologist will discuss a number of possible medications and allow the OP, who is the patient, to make their own choice as to which AED to take.

But this is a long way off. It sounds like the OP hasn't even been referred to a neurologist and is self-diagnosing. She will need EEG and CAT scans, possibly MRI scan, and also a blood test before a diagnosis, and then medication, can be given. This will take some months.

Reply 5

charlyswahn

Thanks for all of your replies. Yes I have been diagnosed and had an EEG scan. I just didn't want to take it further*with meds yet as I don't have that many seizures, they are bearable.

Reply 6

hslt

Original post by charlyswahn

Has anyone got any experience of a medication with low side effects or does it depend on the person? Or is there any natural medication or diet? What would happen if I left it untreated? To be honest my seizures are clustered and no not cause me a great deal of stress although I have read that the seizures can damage brain cells and make you stupid?! Is that true? I understand that It is unsafe to drive but luckily as I am in university I cannot drive for another 4 years anyway.

Thankyou

Less stress, more sleep, avoid triggers - these are common things that help people avoid seizures.

I know a couple of people on epilepsy meds and neither of them said they get any side-effects. Best to discuss the drugs with your doctor - and rather than researching and deciding you don't like the side-effects therefore never taking them, actually try what you agree with your doctor and see if YOU get the side-effects. All the AED can cause side-effects, but equally all/most can be side-effect free - it's all personal.

Original post by River85

But this is a long way off. It sounds like the OP hasn't even been referred to a neurologist and is self-diagnosing. She will need EEG and CAT scans, possibly MRI scan, and also a blood test before a diagnosis, and then medication, can be given. This will take some months.

Just to descale this - if you've had your EEG that's all you need for diagnosis. MRI is used in only specific circumstances (and CT in even fewer). But some epilepsy meds require blood tests before starting and regularly/annually while on them.

(edited 10 years ago)

Reply 7

emobambam

I'm sure somebody has already said this.you should go back to the doctor and tell him of your concerns.you should get treatment

Reply 8

River85

Original post by hslt

Perhaps my post was a bit unclear, but this isn't exactly true either.

NICE guidelines clearly state that an EEG test should not be used in isolation when diagnosing epilepsy.

They also state that an MRI scan should the imaging technique of choice when investigating epilepsy in young people and adults.

Blood tests are taken usually as the first test in order to check general health, whether the seizures can be caused by low blood sugar or diabetes (so not epileptic), and co-morbidity . They aren't just taken when on medication.

Exactly how epilepsy is diagnosed will vary slightly according to location, based on available resources among other things. I don't know of anyone with epilepsy who only had an EEG scan.

I also appreciate that MRI scanners are in high demand. For example, I didn't have my MRI until almost a year after my official diagnosis. I still had one, however, and there was nothing to suggest that there was anything to suggest there was anything wrong with my brain (e.g. a tumour) and my seizures were perfectly controlled. I still had one, though.

(edited 10 years ago)

Reply 9

hslt

Original post by River85

Correct me if I'm wrong, it's a while since I read up on this stuff. But by 'not in isolation' I believe that the NICE guidelines mean that it has to be in a clinical context, there is no need for other investigations just a full history/examination.

MRI are the imaging technique of choice, but generally only in the very young (less than 6 months? or it might be 18 months?), or in adults presenting with new focal seizures. This is because these are the most likely to have a structural cause. There is no point, for example, MRI scanning a toddler with absence seizures - you'll never find anything, and primary epilepsy will give a negative scan too. I don't know if the guidelines have changed? Or if specialists just choose to work beyond these guidelines in some places?

And blood tests might be done - but this is in the acute setting normally, and dependant on age/type of seizure. If you went to the GP and said for 3 months I've had seizures there is no point in testing your blood glucose for example.

Sorry this is slightly off topic OP, but River please correct anything I've said that you know to be wrong here. Thanks.

(EDIT - looked myself. I think I'm half-fight right by the guidelines - 'neuroimaging shouldn't be used when a diagnosis of idiopathic generalised epilepsy has been made' (i.e. primary epilepsy with no focal signs or suspicion of other cause), so in such cases an EEG is adequate for diagnosis. But blood tests are routinely done with some 'at the discretion of the specialist'. Cheers for teaching me something River!)