Lights Triggering Symptoms

[puppylove]

I was feeling pretty good today when I was leaving my vacation at the beach. We decided to stop at a shop that had all kinds of beach stuff and they had tons of kites tied up on the cieling. When I was walking around in there I started feeling sicker and sicker and I realized they had those lights like the ones in the mall and the kites blowing around were making them blink. I feel so sick in the grocery, department stores, the mall, school... and I think its from those lights. But why would lights be a trigger?

[jangle]

I was feeling pretty good today when I was leaving my vacation at the beach. We decided to stop at a shop that had all kinds of beach stuff and they had tons of kites tied up on the cieling. When I was walking around in there I started feeling sicker and sicker and I realized they had those lights like the ones in the mall and the kites blowing around were making them blink. I feel so sick in the grocery, department stores, the mall, school... and I think its from those lights. But why would lights be a trigger?

Yes puppylove, I also notice that lights trigger my symptoms as well. Definitely feel better in dark surroundings. I suppose the photophobia is due to some type of CNS sensitization we have, sunglasses can help!

[Batik]

It's very common for fluorescent/low-energy/strip lights to trigger a variety of symptoms. My eye specialist reckons that 90% of people with ME have visual problems, for instance. Tinted lenses can help. She's assessed me to find the best colour that works for me, as it tends to be a very individual thing. My previous specs for wearing under fluorescent light were tinted blue, and my current ones (which I think work better) are 50% grey. It makes a massive difference for me. It may be worth finding out whether anyone near you does colour testing for dyslexia, as they may be able to help you find the most comfortable colour. In my experience, the best way to test is to try reading under fluorescent light with the different tints, and also to try looking at the strongest fluorescent light you can bear.

[POTLUCK]

Flourescent lights bother me sometimes, but not always. Direct sunlight relieves my symptoms almost always. This is an effect to the eye, not the skin. I have written about this many times on here and in my member profile.

I believe it may be TEMPORAL LOBE EPILEPSY (TLE). That is SIMPLE PARTIAL SEIZURE DISORDER. I have had 2 quantitative EEG's 2 regular EEG's and a video monitored continous EEG all of which showed seizure activity, and been to several clinics including one world renowned clinic to see epileptologists. I have had a variety of opinions, all agreeing on abnormal activity, with differing opinions on whether it is the cause of my symptoms.

I have been on Valproic acid ( which is the most effective of the photosenitiveantiepileptics) since given the diagnosis of TLE 20 years ago. I had no symptoms until 11/2009 when my dizziness and cognitive difficulty started. It may be the VPA is no longer working. I may try some more antiepileptics if symptoms continue. ( Right now I am still using my slow taper of Propranolol and slow increase in running plan. The running part is based on Jangles article with military recruits diagnosed with POTS and forced to run )

I have also been diagnosed with a mitochondrial disorder last month. This is an Electron Transport Chain Complex 3 deficiency ( ETC Complex 3 ) Mito disorders including ETC disorders are known causes of both Epilepsy ( including TLE ) and POTS.

I realize this is a lot of information. The main point for this thread was that the lights could be TLE. I wanted to include the other info. as there are so many interrelated parts to this and we are all just looking to find out how to put it together and get well.

[POTLUCK]

I forgot to note that photosensitive epilepsy ( which is any epilepsy that is triggered by lights flickering on and off can cause full seizures or cognitive symptoms/autonomic symptoms without any physical symptoms. ) There is a great deal of literature showing some flourescent lights particularly older ones without an electronic balast and malfunctioning ones that would be mixed in with the working ones overhead, can trigger this epilepsy.

[Christy_D]

When my daughter was in high school she was allowed to wear sunglasses in class if she felt a migraine was coming on because the flourescent lights could trigger an make them worse. Those lights have a flickering that you can't see by the naked eye until they are starting to burn out. I find them quite annoying as well.

[issie]

Add me to the group that needs sunglasses in certain artificial light.

Potluck, How did they diagnosis your mito issue?

Issie

[Batik]

According to my eye specialist, there are two problems with fluorescent lights. One is the flicker. The other is the colour. If you look at a spectrographic analysis for fluorescent light and then for incandescent light or daylight, you'll notice that the fluorescent graph is wildly spiky whereas the others are smooth.

I forgot to mention the cheaper alternative to having your eyes properly assessed for colour. Go to an opticians, one where they have fluorescent lighting, a decent range of trial lenses for sunglasses, and don't mind if you spend half an hour or so messing about with them. My local optician's, for instance, has several shades of the following colours: pure blue, pure yellow, pure pink, grey, brown, and dull green. My specialist had actually narrowed it down to grey or purple when she assessed me, and messing around at the optician's helped me determine that I was better off with grey, as I could at least combine the blue and pink to form purple. You end up looking through one big round lens rather than two, however, as they usually only have one lens in each tint, so you end up trying to form a sort of tunnel around the lens and looking like a Dalek. Of course, it helps if you're going to have the specs made up at that optician's.

Another easy option if you don't need prescription glasses: just buy very cheap sunglasses in different colours. A friend of mine with an ultra-rare eye problem started to get bad migraines the other year, and by now has a big collection of cheap sunglasses from when she's bought them in a hurry while she was out.

How do you get diagnosed with photosensitive epilepsy, especially if you don't have seizures? I basically got the impression that it's neurological symptoms that are part of the ME which are being set off here. I generally have problems with sensory overload, so noise, smells and crowds all cause problems as well. Simply being in a hospital can cause collapse from sensory overload, even with the tinted specs, though it was worse before, and at least I don't get migraine triggered by the lights if I have my specs on.

A hat can help as well.

[E Soskis]

I'm sensitive to fluorescent lighting as well. I may need to have tinted lenses made so I can keep working in the office without so many headaches. I have seen certain lighting and flashing of lights trigger seizures in sensitive individuals. It stands to reason that with dysautonomia, our nervous system has gone haywire so we may be more sensitive to anything that stimulates the nervous system (lights, sounds, etc...) A sudden loud noise at a certain frequency will send me screaming into the hall - some weird kind of response I suppose. I have a relative that uses a back massager to ease her back pain and I have to leave the room when she turns it on. The rhythmic hum hits me wrong and I feel like I'm going to pass out or vomit so....I leave the room.

[Batik]

E Soskis - I'm still new to POTS, but I know that with ME, sensory problems of this sort are common. They're also common in autism spectrum disorders, I have a friend with Aspergers who gets all of this and we swap coping strategies. I've also been diagnosed with Auditory Processing Disorder. I saw a hearing therapist for it once, and she gave me in-ear white noise generators to help me with the hyperacusis (oversensitivity to sound) and also to help block out unpleasant sounds, for instance when out shopping. Earplugs are the wrong approach, they make the hyperacusis worse. These days you can probably just put on headphones and a recording of white noise. It might be worth trying.

[yogini]

I think pupils dilate when not enough blood is getting o the brain, making us more sensitive to light

[puppylove]

What is ME?

[Batik]

Myalgic Encephalomyelitis, also known (less accurately) as Chronic Fatigue Syndrome or Chronic Fatigue and Immune Dysfunction Syndrome. There's a very high crossover rate with POTS. According to that poll I put up recently, it seems that around a third of the people on this forum have ME or CFS. I'm still trying to get a diagnosis of POTS and am new to the whole thing, so right now I'm finding it hard to tease apart which symptoms are specific to ME, which to POTS, and which occur in both. There's so much variation going on.

[Angela]

This happens all the time to me but it is usually the combination of light and movement...that's why I don't drive however while I was driving I found sunglasses helped. I think horse blinders to block out peripheral stimuli would have helped too if that wouldn't have been dangerous LOL!

[POTLUCK]

Issie-you responded to my thread about mito dx " I have been diagnosed with Mito disease by biopsy now "

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Batik-Dx made 20 years ago was of Simple Partial Seizure Disorder. Different types- this has no physical seizure. Try Wikipedia for further information. I did not think much of it, but did have many of clinical s/s 30s-2minutes, with a max of 30 minutes and also positive EEGs. Since symptoms I initially called dizziness started for me in fall 09, I initially though well maybe it is this Temporal Lobe Epilepsy ( Simple Partial Seizure ) then later recieved dx POTS, or maybe one causes other, or maybe mito causes both. I just want to be well.

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[issie]

Potluck, I do remember you saying that you had mito issues - just wondered how they caught it. My doc said that there are so few mito things that can be checked for and he feels there are many more - yet no testing for them. He didn't pursue testing - though he feels it is an issue for many of us that are his patients.

I'm having more issues with what seems to be mito issues - legs when fatigued will not pick up. Like the muscles just won't respond. For example to get into a car - muscles in thighs seem dead - won't pick up. I know you're now running - do you ever notice things like this with your mito issues?

Issie

[POTLUCK]

Sorry to go off your topic on lights puppylove- Isssie this is from other thread-

Prior to my POTS diagnosis when I felt dizziness was caused by Temporal Lobe Epilepsy/ Seasonal Energy Syndrome the doctor who gave me this diagnosis said he believed it was a mitochondrial disorder and I began looking into it.

Labs were abnormal including Free Carnitine-low, AcylCarnitine C2 C14, C16 etc. many above normal, ammonia high, many repeat CPK high but not sky high ( ~ 3-5x normal )

Mito geneticist seen- did skin punch biopsy based on above abnormalities and clinical suggestion such as epilepsy, DM 2.

The biopsy Fibroblasts showed an " Electron Transport Chain Complex 3 " problem with output 20 % of normal and increased mitochondria overall along with increases in other areas which the specialist says is an attempt by the body to compensate.

He gave me the top secret mito formula I have only heard of till now, which is Carnitine 3g/day, Coenzyme Q10, and a couple vitamins ( C, Riboflavin, and 2 others ) I have not picked it up yet but I think the insurance will only cover the Carnitine.

He did not sound very hopeful it would do much to help me.

[issie]

Thanks Potluck - what are the other two vitamins? I have either tried or am on most all that you have listed. At first I could not take the CQ10 because it was too energizing - but, now am tolerating it quite well.

Hope it helps you. It's always worth a trial to see if we get better quality of life. We might not get a complete "cure" - but, improvement - if only a little would be so wonderful for us all.

Issie

[POTLUCK]

Sorry, only one, Thiamine.

[issie]

Yay, been on that for a few months now and the CQ10 still okay. Will try adding the L-Carnitine next.

Issie

[blueskies]

I am light sensitive. I find fluro lights intolerable now. I never put on overhead lights at home but live by lamplight. I wear sunglasses when outside or in overly lit buildings. I always have sunglasses on when in buildings lit by fluro lights. Combine bright light (for example sunlight) with moving traffic and it's like my brain can't function at all. I get brain fog, dizzy and lightheaded. Crowds combined with bright light can do it to me too -- all that movement.

Someone mentioned horse-blinkers. LOL. I'd like to be able to block my peripheral vision a lot of the time as it can be a problem. Unfortunately as noted, they'd be dangerous.

I'm very light sensitive now but sometimes wonder if by wearing sunglasses I've lowered my tolerance to bright light. I'm also audio sensitive. It was associated with migraine but now it's happening more often. Loud noises, groups of people talking loudly and I just go stupid and find it difficult to concentrate, often followed by a flush that leaves me sweating so badly my clothes are ringing wet and the need to lie down to recover.