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partial seizures not being taken seriously, no diagnosis path, final exams coming in a few months (ireland)

Tue, 12/26/2017 - 21:15
Since November this year I've had 8 partial seizures. I'm 17 and have to do my final exams to get into college in June, I'm planning to emigrate and the lack of progress on diagnosis is really stressful to me. I can't repeat without repeating the whole year and I'm terrified I won't be able to without some sort of treatment. Waiting times in Ireland can be well over a year and I'm not getting any supports at the moment, being told I'm faking something which leaves me drained and unable to focus for several days at a time for attention. It's really frustrating because I've been told multiple times by the a doctor that it's epilepsy, I've also been told by that same doctor that it's not epilepsy "because in *real* seizures you *never* retain any consciousness." The comment was pretty stupid but the doctor didn't remotely specialise in seizures. He seems to insist because I'm autistic, which is something I don't have many problems with, and that my sister has a mental illness that it's a mental health problem and "it's a cry out for help", but I'm definitely mentally healthy, and from what I've researched don't seem to show any signs of my seizures being psychogenic. I luckily don't have any traumatic history or any other reason for it, and my blood tests, urine tests, blood pressure, blood sugar, and CT scan all came out clear, so it's not a physical abnormality either. I wasn't able to get an EEG done, but whenever I'm about to have a seizure I'll always have this weird uncomfortably hot "frying pan oil-spitting" feeling starting at the very back of my head, sometimes it spreads to one side of my head (left I think? don't really remember it well because it's usually quite late into it), and seizures will almost always begin with my right hand violently shaking before spreading to the rest of my body. I had a head injury when I was 9 (I fell face first into an unlit iron fireplace) but that was entirely the front of my head, so it's probably unrelated. Ireland, especially Limerick where I'm from, is really short on neurologists, and I've no clue how I could possibly get a diagnosis before the leaving cert. I was left missing school and wallowing as an inpatient in the hospital for a week with empty promises from the consultant of "The neurologist will see you this afternoon! I'll speak to him!" and only left because my family wouldn't leave me in there over the holidays. These consultants were no help whatsoever, I didn't get told what to do when I felt a seizure coming on, any possible triggers I should avoid, nothing. My school's faculty told me more in 2 minutes after I had a seizure in the first aid room and I've no idea what to do. I don't know anyone in real life who can relate to this (they all act very "hush hush this is scary" and "you've been................................................................................. unwell" about it and it's frustrating) and can't ask them for advice. It's really interfering in my ability to even go to school and if I'm there to focus, and especially to study. Has anyone else had similar problems/experiences? Any advice or just relation to the problem would be helpful, thank you for reading...

Comments

I’m so sorry. I don’t have a

Submitted by Erinking1129 on Wed, 2017-12-27 - 22:02
I’m so sorry. I don’t have a similar experience, regarding seizure diagnosis, but with another condition I have, it took 7 years to get diagnosed properly. It took traveling to a specialist. Would your parents be supportive of you traveling somewhere that has a legitimate neurologist that would work with you? 

Seven years... yikes, I'm

Submitted by henryfox00 on Fri, 2017-12-29 - 07:11
Seven years... yikes, I'm glad that got sorted out but really not an ideal wait time. Honestly they'd be fine with it, I'm almost 18 anyways and my dad's family are from Scotland (one of my options for emigrating) which is quite a bit better than here at least. My mum's kind of a hippy type though so that's a bit of an issue, she wants me to skip seeing a neurologist and go see some Alternative Medicine Specialist that can "help you with what your body is trying to tell you" (she attempted this with my severe childhood eczema and that ended up with her spending like 100 euro for a man to come to our house with salt crystals and "feel the energy" of my environment") so I'm not too hopeful on that front.

Yikes, I can’t offer much

Submitted by Erinking1129 on Fri, 2017-12-29 - 15:50
Yikes, I can’t offer much advice on skipping a neurologist when you have seizures. Maybe she would be more open to it if you agreed to see both? Lol, sorry the salt crystals has me giggling. I hope you can find a way to see a good neurologist though. 

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