Medical Forum / Diseases and Disorders / Epilepsy / February 2005
Epilepsy and Irlen Syndrome
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angeleyes1@ntlworld.com - 10 Feb 2005 10:36 GMT Hi everyone
Has anyone heard of Irlen Syndrome and does it have anything to do with epilepsy? I have recently been diagnosed with severe Irlen problems which are like dyslexia but some of the symptoms were just like side effects from my meds.
It sooooo explains some of the difficulties I've been having with my studies at college and wondered if I was alone in this :-(
G.Ross - 10 Feb 2005 16:05 GMT > Hi everyone > [quoted text clipped - 5 lines] > It sooooo explains some of the difficulties I've been having with my > studies at college and wondered if I was alone in this :-( I don't (know anyting about that) but someone might recognize it later (shortly).
Do you want to list the *Names of any medications (not doses etc.) ?
Sometimes a Medication for one type of condition will be used for others (like Epilepsy), so just on the outside chance they are ones some of us use, we might have information among the participants about if there are side effects or things to watch for wrt. the pills. That might be a 'dead end', but I had 'random seizures' until I found (by accident online) that Grapefruit Juice conflicts with Tegretol operation. Since I only used that juice once or twice a month or less, the seizures that followed it by 12 hours, I wouldn't have related to that. /G.
G.Ross - 10 Feb 2005 16:20 GMT "G.Ross" <> wrote in message ...
>> Hi everyone >> [quoted text clipped - 3 lines] > it, and one day I'll find how to turn on the Speelcheker on this machine ! > :-< > /G. angeleyes1@ntlworld.com - 11 Feb 2005 10:11 GMT Hi everyone
>> Hi everyone >> [quoted text clipped - 20 lines] >seizures that followed it by 12 hours, I wouldn't have related to that. >/G. I take Lamictal and Rivotril. The Irlen doesn't have any meds as far as I know, I just have to wear weird tinted glasses and/or contact lenses. It takes me ages to type this stuff coz of all the mistakes I have to go back and change. If anyone saw my posts they wouldn't be able to read them. What's really weird is that I never used to be this bad. I didn't have much problem at school, that's why I was wondering if there was any connection.
Thanks
Angeleyes
CyberCafe - 11 Feb 2005 20:59 GMT > Hi everyone > [quoted text clipped - 34 lines] > > Angeleyes Thanks for the courage to speak up. Hey, I learned something from you today! Probably the folks with photosensitivity epilepsy, like myself, should be made aware of this. It's interesting that the same eye filters for Irlen syndrome seem to work with some patients with photosensitivity seizures. This is something I've got to look into more.
Barb
angeleyes1@ntlworld.com - 12 Feb 2005 15:09 GMT >> I take Lamictal and Rivotril. The Irlen doesn't have any meds as far >> as I know, I just have to wear weird tinted glasses and/or contact [quoted text clipped - 15 lines] > >Barb I have just been reading a site that says adults have learned to compensate with the problems. This makes sense. Then it said that extra learning pressures, (eg, going to college) can make things worse. Again with the good sense.
I'm left wondering how better things will be once I get the lenses. I know it can't be cured (way used to that line) but will it make the kind of difference that makes things 'normal' again. I mean, will I be able to go shopping again where the lights don't effect me? I feel so guilty that my better half has to do all the grocery shopping on his own. I detest the essays I have been handing in coz I can't get the words right and they really don't say what I want them to. I get so frustrated that I give up. Then of course, I have to deal with stupid lecturers who can't seem to read. I have a support plan that every lecturer, seminar leader, etc. has a copy of. Then I get subjected to films like "The Perfect Storm". I would have walked out of the movie but it was too dark. Thankfully I didn't have a seizure but I did have a few words with the lecturer afterwards. And these people have PhD's!
This is my first year and I have been very nice about it (there have been other instances) but next year when my grades really start to count, I'm not putting up with it at all.
Angeleyes
CyberCafe - 13 Feb 2005 04:04 GMT >>>I take Lamictal and Rivotril. The Irlen doesn't have any meds as far >>>as I know, I just have to wear weird tinted glasses and/or contact [quoted text clipped - 41 lines] > > Angeleyes I don't know where you are going to school. Are you in the US or somewhere else? I attended a Wisconsin tech college five years ago, and they have some kind of student assistance program for students with special needs. I really didn't need anything from them but did tell them about my health issues. Boy, they were nice people and willing to do whatever was needed, but like I said, I didn't need anything right then. It is probably a good idea to at least make the school aware that you might have specific needs. I wonder if they would let you hand in taped essays.
Let us know how it goes once you get the lenses. Do you think insurance will cover it. I'm just wondering how expensive the lenses are. One of my daughters gets awful migraines, which sounds like in some cases may have a connection to Irlen syndrome. I've got to do more research. I spent all day today installing software and trying to learn how to use the programs, but I want to find some information for my daughter asap.
Did you have to travel far to find someone to test you for the filters? Sounds like there aren't many people who do that.
Barb
G.Ross - 11 Feb 2005 22:55 GMT ** Warning -- Long Post! (I spent about an hour scanning some sites, so the ones I thought would be of use to her and Barb are at bottom. It might be related to some szr. types, but might be more specific if some of you don't want to read it all. G.)
> Hi everyone >> [quoted text clipped - 26 lines] > > I take Lamictal and Rivotril. The Irlen doesn't have any meds as far ****************************
> as I know, I just have to wear weird tinted glasses and/or contact > lenses. It takes me ages to type this stuff coz of all the mistakes I [quoted text clipped - 4 lines] > Thanks > Angeleyes G. My reply --> I think the main Medications site if you didn't get a printout from your Pharmacist with the prescriptions for Anti- Seizure pills is on the Ep. Foundation of America -- http://efa.org --*:Lamictal will be there, I don't remember if Rivotril is an AED (anti ep drug) but the name is 'familiar' so it could be there too.
I went off and did some Searches after your and Barb's posts. Interesting I saw your post about the Glasses AFTER I went down the sites (listed below) since one of them sounded like a commercial site selling the Eye Glasses similar to what you described earlier. One search I went through msn.ca (Canada) since that's my main internet connection. I forgot to write down the search 'first' link, but it's something like http://msn.ca ? (Try under "Tools" or "Find", if you're using a Windows system, to see if you get to a search option. If you're not on a Microsoft system, you can probably get to your local one via http://msn.nl ?(a guess) You might have already done this. But when I entered Irlen Syndrome I pulled up about 50? sites that used that phrase. It appears on some of the sites to be related to autism? although the meds. you described are used to treat seizures too. Barb might find the Eyeglasses or *your comments on whether they're useful, of interest.) Under the msn Search, I found these sites you can look at if you want --> http://www3.telus.net/~judypool/irlen.htm then no. 2--> http://www.irlen.com/sss_distortions.htm has some Samples of what it 'looks like' to the patient and a self-test. (*note **one of these somewhere looked like a Commercial Site, so if above wants more info. than you think should be needed for a 'Free Test' it could be trying to sell something). (3) Irlen Syndrome (also listed on this as "Scotopic Sensitivity Syndrome" -- condition that requires filtered light for reading etc. **MAY also be a Commercial site -- had links about either a Book or a Course called "Flailing in the Surf" near bottom of one of the pages I went through. The (2) Links are at http://clevergirl.ca/journal/index.php?p=376 + http://www.dilam.com/press2.html .
*** IT Might have pulled in that first site and no.*4 below this since it knew I was in Canada. A similar search from Your machine, might pull you in some other sites, closer to the Netherlands, as more useful for where you are. But since I found these anyway, there's no reason you can't look at those, in case they would help.
(4) An Ottawa Canada Centre for Treatment of Children with Irlen's but has several Articles within the site about it, type of glasses that it says help some people with it similar to one in (3) is at http://www.irlencentre.ca/general.html . ********** Then I went to Google ! http://www.google.com (I think was the link I had on a bookmark and forgot! to bring here. Try that one first, *or I have a note about http://www.google.ca since I'm in Canada, or http://www.google.nl might give you a link in the Netherlands. (For others) You could try that one, or if in another country or state, you could try add your own state or country code at the End where my 'ca' is, and see if you get into google that way.
This search engine (Google) pulled in ~21! Pages of 9-10 items each Page (!!) which had the search words Irlen Syndrome on them. Note that Google sorts these from what it THINKS are *Most Likely to Least likely from websites, plus Group Posts (like these of ours), it finds. USUALLY the Most likely **useful matches show up within the First 4-8 items, whenever I've used it. But if you click down to end of a page of references and none match what might be of interest to you, click the Arrow or "Next" word (whichever it is) at bottom of page 1, and it will take you on to Page 2 of the articles it found. (Note on the Google search if you haven't used that, you can reduce amount of 'hits' if, for example you are only interested in people who have Irlen Syndrome **and have Posted about Lamictal --> You can set the Search to Find Articles which contain IrlenSyndrome&Lamictal <-- you can add More (& for And) if there is a Third item too. Often that can be handy to First get articles like shown there of People who have Both the Syndrome *and are using Lamictal. You might only get 20 articles, for example-> rather than the number it found just looking for the Syndrome name(500?).
The syndrome appears on One site I looked at (to make sure I wasn't sending you on a wild goose chase), to be Related to a form of Autism ?? At least that's what one of the sites about Children had on it. The sites I looked at briefly and the Medicines you are using mentioned earlier, *are used to treat seizures Too, so even if you find some other sites related to it, you might want to stay subscribed *here too, and let us know if you find other stuff beyond just what is posted so far. Hth, G./
angeleyes1@ntlworld.com - 12 Feb 2005 15:09 GMT >G. My reply --> > I think the main Medications site if you didn't get a printout from your >Pharmacist with the prescriptions for Anti- Seizure pills is on the Ep. >Foundation of America -- http://efa.org --*:Lamictal will be there, I >don't remember if Rivotril is an AED (anti ep drug) but the name is >'familiar' so it could be there too. I actually take Rivotril for myoclonus, but that's a whole other story.
<major snippage>
>This search engine (Google) Already did that one. Always a good place to start.
When I found the main site I emailed them to see if they could make a connection.
<further snippage>
Just did a search including epilepsy and got over 2,000 hits. There appears to be many people with a connection to photosensitivity.
Thanks for all the advice and work you have done. If only I could look at the computer screen long enough to follow it all up :-(
Angeleyes
G.Ross - 12 Feb 2005 15:48 GMT >>G. My reply --> >> I think the main Medications site if you didn't get a printout from [quoted text clipped - 17 lines] > look at the computer screen long enough to follow it all up :-( > Angeleyes Are you using (at home?) a CRT (TV like) Screen to read the 'net? I met someone here ~6 years ago who couldn't use a regular screen (at least the older ones at that time), and used an LCD Screen. This new computer I got has one, and there is no noticable 'flicker' (at least to me). If some of your's might be aggravated by Screen Refresh rates, above might help. I had also seen a 'screen guard' (polarizing type screen face cover), advertised at some computer stores (in Canada), to cut down screen glare, but I don't know if those will help with what you experience. Some Ep. Association sites might answer that latter question. Since the screen guard clips onto the CRT front, even if you were using Computers at a school you might be able to carry your 'guard' with you, and clip in on at any CRTs in Libraries etc. where you are away from home. ? Maybe someone else 'here' could comment if they've used those and if they are portable like I suggested above? G./
CyberCafe - 13 Feb 2005 04:13 GMT >>>G. My reply --> >>> I think the main Medications site if you didn't get a printout from [quoted text clipped - 35 lines] > Maybe someone else 'here' could comment if they've used those and if > they are portable like I suggested above? G./ <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi> is from the National Library of Medicine and has a database of articles and/or abstracts from medical research, medical publications, etc. There was information on Irlen syndrome there, but in my brief research there I couldn't find anything with both Irlen syndrome and epilepsy in the same article.
Barb
angeleyes1@ntlworld.com - 18 Feb 2005 16:49 GMT <snippage>
>> Are you using (at home?) a CRT (TV like) Screen to read the 'net? I >> met someone here ~6 years ago who couldn't use a regular screen (at least [quoted text clipped - 11 lines] >> Maybe someone else 'here' could comment if they've used those and if >> they are portable like I suggested above? G./ I have one of those guard thingys but it doesn't do anything much. I could carry one around college with me but I think my bag weighs enough already!
> <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi> is from the National >Library of Medicine and has a database of articles and/or abstracts from [quoted text clipped - 3 lines] > >Barb I heard back from the Irlen people and they said they hadn't heard of any connection either, but that isn't what my examiner said. I have to set another appointment up for more testing so I will ask whoever again. First I have to try to get funding (groan). Got to make an oppointment for that too. By the time I get all this sorted I will have graduated!
Angeleyes
G.Ross - 18 Feb 2005 18:08 GMT > <snippage> >>> Are you using (at home?) a CRT (TV like) Screen to read the 'net? [quoted text clipped - 21 lines] > could carry one around college with me but I think my bag weighs > enough already! It's too bad it didn't help much. If it did you might be able to make a case :-< if you were in U.S. or Canada for the College to provide one, where you'd use it, under equiv. of Americans with Disabilities Act, so you wouldn't have to carry your own. I also don't know if a Liquid Crystal screen (like I use now) would help your case, since they're about same cost or cheaper now than CRTs, if the Univ. would provide some of those, in addition to CRTs in Libraries. Most portable computers use those, and are getting lighter, if they would work for your type of condition, so long as you could plug them into a 'hub' if you needed to, but are also portable (kind of). Dell notebooks, plus Radio Shack models are running about $900. Canadian. That's down about 50% from 2 years ago, but by the time they'd be more reasonably priced, you might have already graduated ! :-<
Do you need one to take to class? Or is it enough if you could get one that would work for you at home? If the first, perhaps your Dr. could write a 'note' saying you need xx type, and there might be grants or ?? to help finance it. (I thought Microsoft was doing 'gifts' and 'scholarships' a year or two ago, for students who had special needs? They were providing special software plus hardware(?) for people who might not be able to use a regular Windows Screen system... But I've never met anyone here (that I know of), who had tapped into that offer.) G./
>> <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi> is from the National >>Library of Medicine and has a database of articles and/or abstracts from [quoted text clipped - 11 lines] > > Angeleyes angeleyes1@ntlworld.com - 18 Feb 2005 22:46 GMT >> <snippage>
>> I have one of those guard thingys but it doesn't do anything much. I >> could carry one around college with me but I think my bag weighs [quoted text clipped - 13 lines] >50% from 2 years ago, but by the time they'd be more reasonably priced, you >might have already graduated ! :-< I was offered a laptop by the college but I didn't want one. They gave me a home computer though, plus other stuff. I even have a couple of P.A.s who carry my bag and make sure I get to class okay. I'm hoping the lenses will make a lot of difference. I have to jump through a few more hoops till then though.
Thanks for your advice.
Angeleyes
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