Community Forum Archive

Hi, Thank you for posting. Please talk to your doctor about these questions and how this may impact your individual treatment plan. The effects and risks of so-called recreational drugs vary greatly, they may directly affect the brain and seizures or interact with seizure medications, which can lead to bothersome and potentially dangerous problems .https://www.epilepsy.com/learn/triggers-seizures/drug-abuse . For additional support, please contact our 24/7 Helpline, where trained information specialists are available to answer your questions,offer help, hope, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline . Or contact your local EpilepsyFoundation: https://www.epilepsy.com/affiliates

Thank you for the reply (albeit extremely general and possibly automated?)  Regardless, yes I am in constant contact with my neurologist. He did not have an answer for me, which is why I am interested in hearing anyone's personal experiences with a similar presentation. 

I haven’t had 1-2 second seizures, but I have had periods of time where my seizure medication seems to be helping or after titrating off very slowly of a medication where I will have very brief seizures and sometimes they are close together. I do have deja-vu seizures as well as other types of seizures. But, I would say that when my seizures are “very brief” for me, they still last at least 5-10 seconds and they are usually come in clusters, so it may actually only be 1 seizure that I experience as a few seizures over a minute or so, whereas a typical seizure for me can be anywhere from 30 seconds to several minutes. I also don’t ever use recreational drugs or even alcohol, so I can’t relate to the use of psychedelics and what kind of effect that might have on seizures and cognition, etc. 

I've had temporal lobe epilepsy all my life and the seizures have changed throughout.  I had "funny feelings" as a child where I had the sour smell and taste with the sense I had been in the same place before.  Later these included loss of awareness and then in my teens and early twenties I had generalized seizures or "grand mals".  During the mid 1990's I especially noticed real short, and faint spells which I wasn't sure were seizures.  I didn't see them as a threat, and medications didn't work so I left them go.  It wasn't worth trying to fight them with more pills.  And I wondered maybe they weren't seizures; maybe it was my anxiety.Twenty years later I was having more of the focal seizures with impaired awareness.  I tried a few more new medications but I couldn't handle them.  I waited for Responsive Nerve Stimulation (RNS) to be approved.  Finally last summer I got the RNS unit implanted.  I was mostly looking forward to better seizure control but the treatment has provided me with some great answers.  RNS automatically records seizures but the patient is encouraged to use a magnet to mark the recording where seizures are experienced, or just when I want to discuss any suspected sensation with my doctor.  I've noticed many of the short, faint spells and I used the magnet to make note of these.  I didn't think these sensations would show in the RNS recording and I was sure my doctor would think I was over-anxious.  But NO!  At my last visit in December my doctor confirmed he had recorded short seizures all the times that I used the magnet.  RNS hasn't stopped the seizures, and it is much too early to expect full control.  There are many options in settings and the therapy can take years to show improvement.  But just having the seizures confirmed has been a great support.If I had the short seizures and I did not have RNS I still wouldn't be to concerned to get urgent treatment for them.  But they are a warning that the seizures are still there and these can change and get worse.  I'd say you need to keep considering all your options.  Keep track of the short seizures.  This is valuable information.  

Temporal Lobe Epilepsy - Epilepsy is idiopathic, so please take my words with a grain of salt.....Please educate yourself about hypercalcemia and how 'doctors are now learning' about those with the illness will see evidence that their body will deposit calcium in their cordial arteries....and have no evidence in their kidneys, liver nor pancreas.   It

Ooops!   I hit the wrong key on my keyboard....Long story short, being an epileptic, you must find the 'trigger points'.....unless you want to remain on prescription drugs for the rest of your life.  Here are my 'trigger points' in chronological order from toddler to being 55 years old as I am today:  milk, mortar mix, latex paint, nitrile gloves, calcium intake surpassing FDA's recommended 20% daily value.....and the common denominator among everything I have listed is......CaCO3.Irma   irma.rangel05@gmail.com

Temporal Lobe Epilepsy - Epilepsy is idiopathic, so please take my words with a grain of salt.....Please educate yourself about hypercalcemia and how 'doctors are now learning' about those with the illness will see evidence that their body will deposit calcium in their cordial arteries....and have no evidence in their kidneys, liver nor pancreas.   It