Hello and a Question about PSE

[Trinity]

Hello everyone, My name is Amanda and I live in Sydney Australia. I am 31years old and had my first seizure at 14months old. When I was young my seizures were quite severe but they have gotten better and even to the point that I wasn't having any at all for a very long time (13years).

Recently I trialled moving over to a new medication (from Sodium Valproate to Lamotrigine) and I had bad side effects and even seizures. Today I had an EEG and it showed that I am having increased epileptic activity particularly in the photosensitive part of the test. Last time I had an EEG it also showed some photosensitive activity but every other EEG from my current dr (who I have been seeing since I was 1 doesn't show this activity. In light of what's been happening with my medication i've decided to go back on the Epilim and put up with the side effects of weight gain.

I'm not really suprised at the PSE activity being there though since being around disco and flickering lights have always made me feel unwell. I'm just wondering though, is there a way that I can deal with disco lights even though I have PSE? Are polarised glasses or something similar going to help or is that only good for helping with outdoors when trying to avoid sunlight flickering between trees etc. I'm a teacher and our school has a disco coming up. I really want to be involved with it and hate having to miss out. I've never been in a situation before where I couldn't avoid this kind of lighting but it seems like this is going to be one of those times (I mean, i'm sure I would be allowed to miss it but I don't want to) Is there anything I can do to get around this problem?

[TeeTees]

Hi Amanda,

Welcome to the site.

I don't really know what to suggest, as my E isn't really based on Photo-Sensitivity - I'm more of a stress related sufferer.

Personally, if no-one else can come up with any suggestions, I'd just consider missing the Disco to be honest. This won't be the last Disco you ever go to, so I'd rather sit by the wayside and miss it, than go through having another seizure.

Sorry I can't be off much help. I hope other's can give you more helpful suggestions/advice.

[Bernard]

Hi Amanda, welcome to the forum.

Photosentivity may be prone to kindling (where repeated exposure to triggering events can lead to stronger epileptiform activity). I would try to avoid the flashing lights if at all possible.

Is there any way you can participate in the event outside of the dance floor? By the entrance or something?

[RobinN]

Hi Amanda - Welcome to CWE

It sounds like you are in good hands with your doctor. He certainly knows you well.
Does he ever offer any other alternatives other than medication?
Are doctors in Australia careful to monitor vitamin and mineral deficiencies? I haven't found one here yet that bothers, so I am just curious.

[Trinity]

My doctor is great and I absolutely love him. I know just how fortunate I am to have someone that I trust and that i'm comfortable with. I had the same kind of relationship with my GP before she retired. It has been about 6years since and I still haven't found a GP that I feel totally comfortable with - if that makes sense.

Anyway regarding the disco I emailed my supervisor and she said not to bother going because it's not worth the risk to my health and safety. They are also going to get me a LCD screen for my classroom by tomorrow (i've been off work since Thursday due to my Epilepsy and I return tomorrow) because currently the computer screen i'm working with is a CRT screen. I am so lucky that they are so accomodating and that i'm not having any work related problems with this. I'm just so bummed out though because I really want to be involved in the total life of the school. It's only a fairly new job and temporary til the end of the year. There is a good chance they will have work for me next year but i'm trying to make the best impression possible.

[RobinN]

i'm trying to make the best impression possible.

Of course you are. And you are very lucky that they are watching out for you. Take it slow and perhaps what you fear will end up not being a problem after all.

I think I am moving to Australia Amanda. Seems everyone is quite pleased with their doctors. I guess the reps haven't gotten into their pockets yet.

[Trinity]

Move to Australia and you really will be pleased with more than just the healthcare. I'm sure i'm biased but I think this is the best country in the entire world, and i've been to many places.

[Zoe]

Recently I trialled moving over to a new medication (from Sodium Valproate to Lamotrigine) and I had bad side effects and even seizures. Today I had an EEG and it showed that I am having increased epileptic activity particularly in the photosensitive part of the test.

Hello Amanda and welcome to our group!


Take heart, I just did a google search on Lamotrigine and photosensitivity is one of the side effects! Do note this may also refer to photosensitivity to sunlight, not just in terms of seizures. Do ask your doctor for clarification on this.
So maybe yours will clear up in time. The link to the article from a medical text is below. A friend of mine had photosensitive seizures, She found it helped her to used different color tinted lenses in different lighting situations. She figured it out by trial and error. One color lenses for the grocery, one for driving, one for home. You may try asking an eye doctor about this too for some possible help in coping.
It is uplifting to hear about the good rapport you have with your doctor. Gives me one more reason to think of moving to your big island. Hope your seizures improve with the new change in meds.


Oxford Handbook of Clinical Medicine - Google Books Resultby J. Murray Longmore, Ian Wilkinson, Supraj R. Rajagopalan - 2004 - Medical - 900 pages
Lomotrigine is licensed as monotherapy and as an add-on for secondary ... photosensitivity; diplopia; visioni; vomiting; aggression; tremor; agitation. ...
http://books.google.com/books?id=7cj...JAY3wdFFz0d440

[Bernard]

Anyway regarding the disco I emailed my supervisor and she said not to bother going because it's not worth the risk to my health and safety. They are also going to get me a LCD screen for my classroom by tomorrow ... because currently the computer screen i'm working with is a CRT screen.

Wow. That is one informed supervisor!

[Trinity]

I informed her but I didn't have any problem. I just let her know that the CRT screen was no good and wanted to know if I could take my laptop and gain access to my work profile. She let me know that they would put an LCD screen in place of my CRT - that way it would mean not having to configure my laptop to be able to access my work profile.

[KAM]

Hi Amanda,

Welcome! Don't know if this will help with Disco lights but I have the same problem with flourescent lights and what I did was get contact lenses with the amber tint to them. It made such a difference. I would go into meetings at work in the boardroom and had to put sunglasses on to avoid seizures/auras. You can get them without a prescription and you only have to wear them when you need to.

KAM

[Zoe]

Hi Amanda,

Welcome! Don't know if this will help with Disco lights but I have the same problem with flourescent lights and what I did was get contact lenses with the amber tint to them. It made such a difference. I would go into meetings at work in the boardroom and had to put sunglasses on to avoid seizures/auras. You can get them without a prescription and you only have to wear them when you need to.

KAM

Great! That's what worked for someone I knew with PSE.