And there are some epileptic triggers which are extremely common, but everyone does not have them. An excellent example of this is stress. Before I came on this site years ago, I thought everyone with epilepsy had the stress trigger, but I have a couple of friends on here who do NOT. This is how we help each other to learn about epilepsy when doctors and even the published (up-to-date) sources do not have all of the examples. And an excellent example of this when it comes to epileptic seizures is the most common one: Focal Onset Impaired Awareness Seizures (complex partial seizures). On the Epilepsy Foundation (and its equivalent sites) you will see postings of the most common forms of these seizures, but these are NOT the only forms of the seizures. Likewise, there are posted the most common types of Auras and Triggers, but these are not ALL of the seizures and everyone does NOT have a seizure attached to an aura (regardless of what it says on these sites). In my case, it is theorized (because no published research is available yet) that why I have auras without at least a Focal Onset Aware Seizure (Simple Partial Seizure) with it, is because of the 17 years of brain damage that I sustained because my epilepsy started in August 1980, but I was not diagnosed and treated until October 1997. The presence of the brain damage has been proven.

@A MyEpilepsyTeam Member Yes I absolutely agree, not all forms of epilepsy are the same, and this is a condition that mutates over time. In my case I can't say that stress is really a trigger, but it does worsen the symptoms as it seems that hormones like endrophins seem to have a calming effect on the brain whereas adrenalin and other stress hormones increase brain electric discharges and thus the seizure activity. I also came upon something interesting recently, I happen to have some accentuated joint inflammation in my body. It became worse and worse the last year and I do not know if it is from working out too hard or it is an inflammation caused by stress because I had a really hard time lately, but this inflammation affected my neck as well and reading about neck damage I read about a condition called cervical vertigo. It features all my balance and coordination issues and maybe I was wrong blaming it all on my brain. Indeed there are auras like flashing lights or sudden tinnitus or a sudden sensation of fear but these coordination problems do not seem to be focal onset seizures as I did not see anyone here reporting this issue. I only saw balance problems in people who take lots of meds and it's a side effect from them, but I had these issues without any medication so it's worth speaking about this with my neurologist as well.
Lamotrigine seems to have improved my nighttime seizure activity and my mood swings but it does not seem to have any effect on this coordination issue so maybe it's something else, so I want to take anything is consideration before any dosage increase.

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A MyEpile...

Sorry to here about all of that! However, at least you have a local neurologist who is a nice person and can help you with the central issues of Epilepsy. I have never met an epileptologist. I haven't bother to look how many are even in the state of Massachusetts. However, I do know the Epilepsy Foundation New England was setting up a database (years ago) to attempt to keep track of at least all of the neurologists in each of the New England states. The Epilepsy Foundation New England has been very helpful to me. However, I have heard from other friends on here that the regional, state or section of state Epilepsy Foundation that they have is only focused on fundraising or certain functions (not all) of what the national Epilepsy Foundation was created for. And even though I personally do know what it is like to have to travel hundreds of miles for an appointment with a neurologist (as some of friends in the larger states in the USA or in large nations with a very limited amount of neurologists (nevermind the extremely rare epileptologists). A good neurologist is better than an arrogant epileptologist. As for the advice on this particular subject, if you have a primary care doctor (that is also a male --as I have), then this person can help you. Simply being put onto a daily baby aspirin can hamper males and it only gets worse when you add in some of the other medications that we need to take to deal with epilepsy and the mental disorders/illnesses that come along as part of the package for some of us. As with any medication, there are some side effects that some have but many others do not have. (continued)

@A MyEpilepsyTeam Member well as far as I know I haven't heard of any neuropsychiatrist in my country, and there are only 2 epileptologists who are very far from where I live. I did see one of them who confirmed that what I have are epileptic seizures but he was very rude and not even letting me explain my problem, he was just bothered about the grand mals and nothing else (although I specifically told him I haven't had a grand mal in 7 years and I only saw him due to the increase in my auras). He just gave me Depakine, which is similar to Depakote but in my country is sold under this brand, but it just made my seizure activity worse during the night so I stopped taking it and felt better. Now I am skeptical about any epileptologists so now I am working with a local neurologist who is actually a nice person, but the only bad thing is that she is a woman and I am not comfortable talking about these issues even if they are epilepsy related. But I hope I find that courage and that I do not embarrass myself.

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A MyEpile...

Actually, if you have a good neurologist/epileptologist who actually listens and makes the time to answer, then you can ask this person because it is an aura, thus something to talk to with one of them. However, if you have a neuropsychiatrist (a psychiatrist who is also has a lot of additional training in neurology -- typically specific to epilepsy and maybe a few other key ones -- though not the knowledged level of a neurologist (and definitely not to the knowledge level of an epileptologist), then you can talk with this person too. And the neuropsychiatrist, depending if he/she knows your neurologist/epileptologist and is respected by she/he has a good working relationship with your neuropsychiatrist, then the neuropsychiatrist can be your intermediary.

And if you are at the point where you fully trust your neuropsychiatrist or psychiatrist, then you can sign a document that allows the neuropsychiatrist/psychiatrist to freely share anything told in a private session with any of your medical professionals, as well as, with your health proxies. I am at this point with my psychiatrist (who is at least a minor neuropsychiatrist -- his boss is the one who is a true neuropsychiatrist) that I will be doing that at my in person appointment on November 24th. This will prevent the confusion that happened last year that had my neurologist thinking that I was considering suicide in order to have my brain available quicker for researchers to examine the brain damage (caused by the 17 year delay between the return from hibernation of my epilepsy (in August 1980 -- 2 weeks before I started high school and 3 weeks before I turned 14), but I was not tested and diagnosed as being epileptic and then started on Tegretol until October 1997.