Worried about issues with flashing lights and sounds

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Djonma
Regular Member


Date Joined Aug 2005
Total Posts : 285
   Posted 7/27/2007 11:25 AM (GMT -7)   
OK this is going to be a long story!

Years ago I started to have problems with flashing lights.
I'd jump back as if shocked if I saw flashing lights. Then I'd get this weird pressure / pain in the top of my head. It felt like my head was going to implode, not explode though!
I coped with it by just screwing my eyes up tight if I saw flashing lights.
That got me through for a while.
Then, a few years ago I had a period where I was having blackouts.
Not from flashing lights, I was just getting the same pressure / pain in the top of my head and then blacking out.
But I could kind of hear people after it... I think I'd be out for a little time, and then people thought I was out, but I could kind of hear them, but I couldn't move, but I'd be shaking a bit, and it was like listening to people in another room, like they were really far off or something and I'd tense up and shake a bit.
(Being vaguely awake actually got me insulted by a paramedic - she said I wasn't being helpful or trying to talk to her, but I could only kind of see and hear her and I just needed to curl up into a ball!)
I ended up in hospital after one of these blackouts and they did a CT scan of my brain and said it was all normal. They thought it might be a gland in the top of my head, but the scan showed it was clear.
I started to get problems with 'flashing' sounds as well.
I'll try to describe what happens with the lights and the sounds.
It feels like my brain suddenly tries to keep up with the on and the off. So when the sound / light is on, it lurches forwards, and then the sound / light goes off and it lurches back again. And it just can't cope with going backwards and forwards.
That sounds so weird, but that's the way it is!
It only happens at certain frequencies though; if the sound / light gets too fast, my brain just ignores it. Like something being too close to your eyes, you just give up trying to focus.
It's so much worse with two independent sources though, and frequencies aren't as easy on me then.
Say if there's two different sources of flashing lights at different frequencies, my brain just goes nuts, straight into the pain/pressure thing and I seize up and twitch a bit.
I have to close my eyes really tightly.
Same if there's a 'flashing' sound and a flashing light, or two 'flashing' sounds.

I have fibromyalgia and dyspraxia, and I have major sensory issues as a result, so at first I just thought it was that.
However... I'm bipolar, and I've been on Epilim for nearly a year, and it all went away.
I could look at flashing lights without a problem, and watched loads of anime with loads of flashing lights and was really happy at not having to look away for some scenes.

But... my psychiatrist and I have decided to change the Epilim for Seroquel because I'm physically disabled and can't exercise much, and the Epilim has caused me to gain a lot of weight.
And now I'm off it, I'm so much worse than before!
It's not even flashing lights - just something being on screen and off again regularly (like in anime / cartoons because they just reuse the frames to 'flash' things). It sets me off horribly!
And a game I play online called Eve Online is a game where you pilot a space ship, and going into warp is setting me off and that's not flashy, it's just got a warp effect coming at you so it changes too frequently for me.

I'm really worried that I was on an epilepsy anti-convulsant and it stopped my problems, and now I'm off it again, I'm really, really bad.
Does this mean I have epilepsy?
I'm going to see my GP on Monday about it, but I've had an MRI scan of my brain earlier this year and they said nothing was wrong.

Does what I've described sound like epilepsy?
It's so difficult to describe what's happening... people say your brain can't feel things, but it really feels like my brain's going nuts and I feel like I'm going to pass out or that my whole body is going to get out of control and the twitches will get worse and everywhere.

Nicola
Hypermobility
BiPolar
Thoracic Outlet Syndrome
Fibromyalgia
Thrombocytosis
Dyspraxia
Asthma

Post Edited (Djonma) : 7/27/2007 12:32:14 PM (GMT-6)


Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 7/27/2007 7:01 PM (GMT -7)   
I was diagnosed with epilepsy last August and still do not have my seizures under control.  I don't know that I have any helpful answers for you, but did want to respond.  I am very sensitive to loud noise, music and bright lights.  This has kept me from going to church and there are very few restaurants I can go into.  But this sounds different from what you are experiencing.  I think you are on the right track by seeing your GP and then he might possibly want you to see a neurologist.  I am going back into the hospital in August to repeat the 4-5 day EEG and this time they are going to add a lot of loud music and brights.  Let us know what you find out and welcome to the forum.
 
Take care!
 
Carla

Epilepsy, severe adult onset asthma, allergies, GERD, hypothyroidism


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/28/2007 1:10 AM (GMT -7)   

Hi there,

Some of what you describe sounds like epilepsy and if Epilim solved the problem, im not sure why your psychiatrist took you off it! Have you had an EEG done? Like Carla, im not sure that I have a firm answer for you but I wanted to respond to let you know that I am thinking about you and that I am here for you if you ever need someone to talk to.

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
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Djonma
Regular Member


Date Joined Aug 2005
Total Posts : 285
   Posted 7/28/2007 7:49 AM (GMT -7)   
Darren, I came off the Epilim because of the massive amount of weight I've gained in less than a year on it.
My Psychiatrist didn't know about the flashing light problems. I've not had an EEG done, no.
It looks like I'm in for yet more tests. *sigh*

Thanks for the responses!

Nicola
Hypermobility
BiPolar
Thoracic Outlet Syndrome
Fibromyalgia
Thrombocytosis
Dyspraxia
Asthma


Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 7/28/2007 5:49 PM (GMT -7)   

Nicola,

I noticed you also have asthma.  So do I.  I have gained about 70 lbs. from Prednisone, so I hear what you are saying about the weight gain.  I don't have a choice, though.  It's take it or not breathe.  I sort of like breathing.

I definitely think you need to get your situation checked out.  It sounds like something is going on, I don't know what.  Keep us posted.

Take care!

Carla


Epilepsy, severe adult onset asthma, allergies, GERD, hypothyroidism


HighlandWolf
Regular Member


Date Joined Jul 2007
Total Posts : 27
   Posted 7/28/2007 9:01 PM (GMT -7)   
So should I see another Neurologist..cause flashing lights bug the crap out of me and set my head off..literally. During the EEG. I started to twitch. It sets my migraines off..to the point it feels as if my teeth are having an earthquake. My neuro says my EEG was normal..and he said the CT Scan with and w/o contrast was normal. And I had to give away a prism type ball that was like a disco ball cause it set me off. I had like brain spasms and a severe migraine. The neuro says there is nothing wrong. Only thing you have is you have Complicated Migraines, and Neuropathy(From RA) He tried to tell me at first it was food allergies..then it was cause I was overweight..come on. Your brain doesn't do this cause of that. I lost 165 pounds cause of different things, one was a reaction to Depakote he put me on. So..what I am saying is..should I see a different neurologist? I went back to him last week. My migraines had gotten worse, as has my neuropathy. He just ups my Zonegran. I am now taking 2-100 mg. caps in the morning, and 3-100 mg. caps at night. My book says this is over the recommended dosage. So I am not sure he knows what he's doing. I can't say I feel better about anything he's done. Period.
Even a man who is pure of heart and says his prayers by night will become a wolf when the wolfsbane blooms and the autumn moon is bright.
 
 
 
Confirmed Diagnosises:
Rheumatoid Arthritis (27 years) Neuropathy (from RA 11 years) Genetic Nerve Deafness (10+ years) OsteoArthritis (12+ years) GERD (17+ years)
Mild HBP (less than one year) Complicated Migraines ( 15+ years) Vertigo( 3 years) Allergies and Chronic Bronchitis, (all my life)Chronic Diarrhea (16 years)
 
Medications: Prevacid (When TAP gets off their booty) Lisinopril, Zonegran, Relpax, Arava,Nasorel, Singular,Meclizine,Lomotil,Ultram.
 
Non-Prescription:
 
Chromium (to regulate hypoglycemia)
B Vitamins
Vitamin C
Green Tea
Papaya ( for replacement of enzymes lost from gall bladder removal.)


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/29/2007 9:39 AM (GMT -7)   
highland_wolf & djonma,
 
I would suggest you both see a neurologist and tell them what you have told us. You both sound like there is something amiss and that should be checked out sooner rather than later before it becomes a larger problem.
 
Stay Strong & Be Happy!
 
Darren
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 7/29/2007 2:31 PM (GMT -7)   
I totally agree with Darren.  You need to be seen by a neurologist.
 
Take Care!
 
Carla

Epilepsy, severe adult onset asthma, allergies, GERD, depression, hypothyroidism


RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 664
   Posted 8/26/2007 4:03 PM (GMT -7)   
nono   nono I also agree with Darren, but in the meantime:
 
 ~ Try to stay away from Casinos (with the noise and flashing lights)
 
 ~ Re: computer games: See if you can use a L E D Flatscreen monitor. There is no glare whatsoever and no bright flashing lights, very soft on the eyes.
 
 ~ EEG,MRI, all comming back normal: sometimes the seizure condition is burried deep within the brain and the EEG and MRI can't pick it up, and it could also stay dormant deep in the brain for several years and then, something triggers it, then your seizures can become active again or maybe you'll only have one.
 
This is my own opinion only from 30 years of EP experience.
 
Randy
Diagnosed with Epilepsy & Ulcerative Colitis.
Current Medications: Diantin 275mg, Pheonobarb 150mg, Asocol 3,000 mg.


Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 8/26/2007 8:09 PM (GMT -7)   
I did spend a night last weekend in the seizure monitoring unit at Vanderbilt University Hospital.  They decided that I am not going to have a seizure from the loud music and bright lights even though I did have some jerking movements during the test.  Supposedly, it is from the anxiety of thinking I am going to have a seizure out in public.  They are scheduling more out-patient tests to try to determine why I am still not seizure free.  My neurologist is sending me for a neuropsychiatric evaluation.  I am hoping they can teach me some coping skills for this.  I will let you know what I find out.
 
Carla

 Epilepsy, asthma, GERD, depression, hypothyroidism


HighlandWolf
Regular Member


Date Joined Jul 2007
Total Posts : 27
   Posted 9/1/2007 11:39 PM (GMT -7)   
Well I found out I was having a severe reaction to the Zonegran. The sucker did not tell me it was Sulfa..which I am allergic to. I had a huge rash all over my face..looked like I was in a fire.The black fireman's face..He said oh..go to ER..I said I ain't dumb..I stopped it when it happened..only good thing he has done is Relpax.. ;)

I am considering going to Barnes-Jewish Hosp in St.Louis..I know of a great neurologist there..IF he's still there..Dr. Dowling..
Even a man who is pure of heart and says his prayers by night will become a wolf when the wolfsbane blooms and the autumn moon is bright.
 
 
 
Confirmed Diagnosises:
Rheumatoid Arthritis (27 years) Neuropathy (from RA 11 years) Genetic Nerve Deafness (10+ years) OsteoArthritis (12+ years) GERD (17+ years)Myalgia(15+ years) Mild HBP (less than one year) Complicated Migraines ( 15+ years) Vertigo( 3 years) Allergies and Chronic Bronchitis, (all my life)Chronic Diarrhea (16 years)Cervical Spondylosis..just diagnosed. Osteophyte Disc complex..just diagnosed..Cervical Stenosis..just diagnosed..4 bulging discs..just diagnosed.
 
Medications: Zantac,Vicodin,Lisinopril, 
Relpax,Arava,Nasorel, Singular,Meclizine,Lomotil,Ultram. 
 
 
Non-Prescription:
 
Chromium (to regulate hypoglycemia)
Biotin (also to regulate hypoglycemia)
B Vitamins
Vitamin C
Green Tea
Papaya ( for replacement of enzymes lost from gall bladder removal.)


Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 9/2/2007 5:31 PM (GMT -7)   

Highland,

If I were you, I would check and see if the neurologist you mentioned is still in St. Louis.  You could probably check that out on line.  It does sound like you need a neurologist you can trust.

Good luck!

Carla


 Epilepsy, asthma, GERD, depression, hypothyroidism


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 9/3/2007 1:49 PM (GMT -7)   
Im glad to hear you know what the problem is now HighlandWolf. At least you know what you were fighting! The neuro in St.Louis sound like a good idea. If Dr. Dowling isnt there anymore, see if you can trace him to another hospital... Perhaps he works in a hospital locally?
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 

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