Quick Links
Resources
About MyEpilepsyTeam
Powered By
Mostly for UK people ,but US citizens feel free to chip in.In the UK ,do we have eleptologists or do they just exist in other Parts of the world ? Posted this 6 months ago as well
Yes and I eventually went private as the nhs at 26 and all my 20s and later teens were so rushed uninterested and not interested in the fact they had still not gotten my epilepsy controlled so… read more
Hi Everyone,
Please help?
I haven't seen a Neurologist or Specialist for over 30 years, and relied on a GP and Government Hospital for medication in South Africa.
Since having re-located, I requested review and now have an appointment in an Epilepsy Clinic in July.
Obviously, I don't know what to expect and have so many questions; what worries me most is a change of medication when I am so far under control (as far as I'm concerned).I've never had an MRI scan done, and no EEG for over 30… read more
If your worried about an mri the last time i went to the neurologist they put glasses an ear plugs on you i about fell asleep so i wouldn't worry
I've had an appointment made to see one in a few weeks but I don't know why so wondered if anyone else had seen one/what they do? (I'm in the UK btw)♥️♥️
Definitely don't turn down having an epilepsy nurse. I always go to my epilepsy nurse first with anything I'm worried about. Good luck and I hope your appointment goes well 💜💜💜
Hey everyone,
So I have been researching how the ESNs work over here in Australia compared to overseas and it turns out that the majority of them work in what's called an Epilepsy care team made up of the ESNs, GP, neurologists and other NPs and specialists. Particularly if you see one in the public system.
Does anyone else see an ESN that operates in a similar way? Also what are the other specialists and NPs that are most likely to be in the Epilepsy care team?
Thank you
Jimi, I think you're making a few assumptions about folks because of the culture they live in. Opinions not facts.
An interesting gentleman's conversation to be sure.🙂
Is anyone else finding it impossible to get hold of tegretol 400mg prolonged release tablets? I'm getting really stressed out and worried as I have rang round so many pharmacies and no where has it in stock. The epilepsy website says stocks are back in but can take weeks for pharmacies to get their stocks back up. I don't know what to do.
Hey there, I haven't managed to get anything sorted yet but hopefully the hospital and the manufacturers of the medication will get back to me this week. Hope all is good with you.
How long did it take for you to renew your bus pass?
I have 2 weeks left on my bus pass, they won’t accept a letter from my neurologist, so I’ve got to get a letter from my gp so I can get a new bus pass?
But with all my medical conditions they should accept my neurology letter as they said it’s not enough.
It really depends on where you live, and how you do it. Mine doesn’t take long - admittingly I can’t remember how long it took me to get mine done, but it is now mainly done online. Perhaps you… read more
I have had my driving licence from 2021 till now it's been refused now I know why, but I might be able to help you as I struggle the first time to get it back due to COVID and my medication
Hope this… read more
My husband has had non-epileptic seizures since 2002. Nothing really seems to help, other than valium (slightly) and medical marijuana. He was prescribed Neurontin for chronic back pain, and 1 week and 3 days into titrating up, he was in the hospital with what they thought was "status epilepticus" for several days of a 5-day hospital stay. He has had EEGs with no abnormal focus, CT scans, MRIs, and there is never any abnormality other than a subarachnoid cyst in his brain that they say is not… read more
I've been diagnosed with temporal lobe epilepsy by at least 4 neurologists and non-epileptic seizures by 1 neurologist.
Having more seizures post stroke.
Thank you. This is great info. Thank you. 🙏
I'm 21 years old and live in NC. I've been on a list of seizure meds all of which cause my seizures to increase in frequency, length and intensity. I have no health coverage whatsoever, I can't get referred to an epilepsy center due to this because no neurologist wants to see someone with no income or coverage. I know once I get on the right dosage I'll be able to work again because I've had the concentrates for epilepsy a few times and felt like an entirely new person for like 2 weeks. No… read more