What do you do when you have something that doctors are afraid to touch, something that medicine can't cure and who's testing would traumatize the one who goes through it?

I've been having a really, really hard time lately. I have seizures, and more specifically I have stress-induced seizures. I'm really sure they're psychogenic non-epileptic, but because of my history with Epilepsy, which had been caused by a brain malformation that almost killed me I... I'm really scared of trusting myself on these being psychogenic.

I uh, I know psychogenic seizures aren't well-known, so let me backtrack. Epilepsy is a condition that is caused by strange electrical activity in the brain. Most people know it by the infamous tonic-clonic variety, but it takes a lot of forms which can be dependent on where the misfiring is happening within the brain. It is entirely involuntary, and can usually be minimized by medicine. Normal cases of Epilepsy can be lethal on very rare occasions, and as I understand when they are lethal it's due to the sheer quantity of electrical activity, though no one really knows why the brain of an Epileptic acts the way it does in the first place. In my case, the Epilepsy I'd once had did have a cause - a congenital brain malformation - and I had surgery to remove it. It was a lot more lethal than normal seizures, and I'd not be here today without that surgery. That's it's own mess, physically I healed just fine but..... I'm really terrified of seizures and death and things now.

Psychogenic non-epileptic seizures, on the other hand, can look much the same as Epileptic seizures, but the main difference is that there is no strange electrical activity in the brain like with an epileptic seizure. Psychogenic seizures, as the name suggests, are the body's response to extreme stress which has nowhere else to go. They aren't lethal, but they are just as unwilling as epileptic seizures and can be really terrifying. They too can manifest as the infamous tonic-clonic seizures, which is what mine now are. Psychogenic seizures cannot be controlled at all by medicine.

This all means that doctors, as long as they are willing (there is a strong bias against it in the medical field), can diagnose psychogenic seizures, but nothing else. The problem however is that the only way they can diagnose seizures, regardless of what kind, is by doing brain scans while the patient is having a seizure. I only have about one seizure a year, usually, and even that low frequency does major damage to me emotionally.

I know these seizures are psychogenic, I'm really good at intuiting that kind of thing and I've put in enough time to research this that I was able to realize that my own doctor's knowledge on the subject was outdated, but I.... I'm just scared. I can't go through the testing with my doctor because I know it would destroy me for more reasons that what I have mentioned, but just trusting myself on this... I'm terrified that I could turn around one day and realize that this is killing me after all. I've been trying to trust myself on this matter for six years and haven't been able to do it. And even if I could bring myself to go through the testing.... There's no guarantee at all that they won't give me the wrong diagnosis.

There are so, so many things that go into this, I really want to be able to trust in doctors and modern medicine but I know I can't and it's really eating away at me. I want someone who can help me but once again I'm the only one. I feel so left out in the cold and although I'm closer than ever before, my goal to overcome this PTSD also seems further than ever before. I'm just so scared, and trusting myself seems so impossible.

I know I only have one a year, I know that even if they were epileptic the low frequency would mean I'm in very little danger, I know that there's basically no chance of these actually being my old seizures because congenital malformations won't "come back" once removed and the surgeons were extra careful to make sure that those would never return, I know that the ones I do have only occur under periods of extreme stress and that some of their key elements are.... extremely unlikely to near impossible for epileptic seizures (I can fight the seizure, keeping some control of myself and my consciousness), and yet.... despite all of these things in my favor.... I'm scared. I'm scared that I could be wrong. I'm scared of making the wrong choice and starting this whole cycle over again. I've been emotionally suffering from this for almost 10 years, and that's only counting post-surgery. I don't want to make it 20. But what can I do at this point? I'm trying to find that answer, it's just really, really difficult.

No one has to try and give advise to this. I just needed to say it.

I'm so sorry dear, that sounds really tough. But stay strong and positive about everything! I believe in the law of attraction, so you're thoughts and perception makes your reality.

Oh dear... I've never had seizures, so I can't even pretend to understand what you're going through. But please... don't beat yourself up about your fear or your concerns. "Once a year" may seem infrequent, yes, but it sounds like it has a tremendous impact on your everyday life. When you're living in fear, wondering when the next one might happen, I can understand how that would eat you alive.

In the end, whether or not you trust your doctor and modern medicine is your call. You seem like a strong, capable person, especially to have dealt with all of this. Which is to say, you're more than capable of conquering your fear. It's absolutely okay to be afraid, this is scary stuff! But you don't deserve to suffer like this either.

Have you considered therapy? Someone might be able to help you work through your emotional weight and how severely this has affected you. It might be a good baby step in the right direction? If you don't feel like you could handle medical testing for your condition, you could at least find emotional support to help you work through what you're feeling? I mean, to me, it sounds like you have your mind made up, you've done the research, you have all the facts, everything you need to support that you'll be alright. But your emotions and worries are terrorizing you and not allowing you to trust yourself. Therapy could possibly help change that.

That being said, I'm not a professional, so I can only try to offer support... but my heart goes out to you after reading everything you're going through and I really hope you can find peace. <3