Need advice please

[worriedflatmate]

My flatmate has epilepsy and is a frequent fitter, and I’m worried about how he’s dealing with it. He’s been epileptic since he was a teenager (he's now 23) and says he’s never managed to find any medication that works. He also has a problem where his shoulders both dislocate when he fits which causes him a lot of pain. He recently had surgery on one of his shoulders, but had a fit not long after the operation which seemed not to have worked as it dislocated again.

He very rarely talks about his condition, when he does refer to fitting he calls it ‘spazzing out’ and I’m pretty sure he just wants to pretend it doesn’t exist. Recently I tried to get him to open up a bit and he confided in me that he doesn’t actually take his medication. I fear he has never actually tried taking medication for any length of time, yet he had been telling his doctors and family that he has. His family do not live in the same city as us and his dad worries so much about him. My flatmate is also planning on moving to Thailand in a few months which is causing a lot of concern.

He seems to think he can control his epilepsy through positive thinking, and he doesn’t seem to understand just how bad it is as he usually doesn’t remember anything until a while after he has come around. He has to go to hospital to get his shoulders popped back in every time, which I know he hates and was hoping the surgery would sort out. After this last fit I had almost hoped that the fact the shoulder surgery did not work would make him take his medication more seriously but it hasn’t. His last one really freaked me out more than usual as he briefly stopped breathing and went blue.
I’m very concerned that everyone else takes him on his word that he has been taking his medication; his doctor prescribed him some new pills recently as he told him the old ones weren’t working (he hadn’t taken them either – he only needed a reference for the shoulder surgery) and his family are devastated each time it happens as they see it as more medication which doesn’t work.

I don’t know what to do, if anything. I know it’s none of my business really but the thought of him moving abroad and having to cope with this on his own is terrifying me. I don’t want to betray his trust or go behind his back but I also promised his dad I’d keep an eye on him last time he came out of hospital, and I can’t believe the doctors can’t tell from a blood test or something that there’s none of the drugs in his system. I need advice – should I try and make it known to his doctor (we have the same GP) or family, or just keep my nose out of it and let him get on with his life? Please help, any advice would be much appreciated. Thanks x

[Nakamova]

Hey wf --

It's great that you're concerned for your friend, and you seem to be in a tough place. I would start by trying to talk to him again, explaining how worried you are. You can tell him that you feel accountable to his dad because of your promise and that you will let his parents know what's going on if he doesn't. You don't need to feel guilty about this -- it's still his prerogative to refuse to take his meds (even if that's a bad idea).

If there's any way you can get your friend to come on this site, he would learn about the risks of having uncontrolled seizures. Aside from the injury to the body and brain each time he seizes, there is also the risk of of long-term brain damage (especially to memory), and the possibility that the seizures will escalate and lead to status epilepticus (fatal unremitting convulsive seizures).

Many of us here at CWE are not fond of our meds -- it's no fun to choose between seizures and side effects -- but it's also important to get seizure control, one way or another. In addition to meds, your friend can look into neurofeedback and diet, which have helped some people reduce their seizures both with and without meds. And being proactive about avoiding triggers (like fatigue and stress) can also make a difference.

I injured my shoulder due to seizures. It kept dislocating on its own (at least seven times over the course of a year) and I learned how to pop it back in myself or with the help of another person. (If you want tips let me know). I also had surgery to repair it, and I'm MUCH happier -- especially because my seizures are controlled by meds. I would urge your friend to consider the benefits of having stable health. But If he won't listen to you or his family, that may be the limit of what you can do.

Best,
Nakamova

[alivenwell]

I'd vote for a resounding YES to confide in the physician(s). Your concern can be relayed by the doctor who can be more neutral. That gives a high priority reference to a neurologist.