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RP and Photopsia - Retinitis Pigmentosa Room

About RP and Photopsia

Previous Entry RP and Photopsia Feb. 16th, 2006 @ 11:30 am Next Entry
I am a 50 year old man, and was diagnosed with autosomal recessive RP in 1993. At first the symptoms were poor dark adaptation and peripheral vision, although my visual acuity subsequently began to deteriorate. However in 2000 (during a particularly stressful period in my life) I began to suffer from photopsia (ie flashing lights), and since then this has got steadily worse.

The photopsia takes the form of flashing points of light (at about 5 cycles per second), across my entire field of vision in both eyes, and is there constantly (I have previously described this as if it were watching a TV screen that had not been tuned correctly, and was being masked by the visual noise). The photopsia is always there, even when I shut my eyes or am in the dark, although some days it is worse than others.

In order to alleviate photopsia I have been prescribed drugs such as Phenytoin, Sodium Valproate and Tegretol, and whilst Phenytoin does help a little, it does not dampen down the symptom of flashing lights enough so that it can be ignored. I have also tried a course of acupuncture (in conjunction with Chinese herbs), but this did not really help.

I understand that the form of photopsia from which I am suffering is unusual, since most people seem to get static images that were not always present. I would be extremely interested to hear from anyone else with RP that has been suffering from symptoms similar to mine. I would also be interested to hear about any other form of treatment prescribed to alleviate this rather distressing symptom.

David
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From:(Anonymous)
Date:August 23rd, 2006 05:18 pm (UTC)

Photopsia

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I, too, have had this kind of photopsia from the beginning. my sight is still pretty good and the photopsia is just in the blind (or going blind) spots. One doctor thought it was the retina cells dying (and misfiring). My own sense, from reading medical literature, is that this photopsia may actually cause the cell death, but I don't know (and I don't think anyone knows) what causes the photopsia. Light, or over use/stimulus of the retina can lead to blindness, and since this type of photopsia is constant, I think it may actually be a cause, not a result.

mb
From:(Anonymous)
Date:September 19th, 2006 12:22 am (UTC)

Photopsia but no RP

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I am a 27 year old woman who has had constant photopsia for three years however with no RP. My symptoms are the same as you describe. I have had several dilations, visual acuity exams, and recently an electroretinogram, all of which appear normal. My doctor says that this is a "cognitive" problem, probably in reference to my comment that the photopsia is exaggerated during stressful periods. He said that in his experience with patients (and he is quite old), this problem tends to eventually 'go away'.

I am nearsighted and have a slight astigmatism but with lenses my visual acuity is spot on. I have no history of migraine but my mother gets them frequently and so I am wondering if I have inherited her poor corticovascular situation, meaning the problem stems in the brain and not the retinal area.

From:(Anonymous)
Date:February 26th, 2010 12:19 am (UTC)

Re: Photopsia but no RP

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I'm sceptical that it's a cognitive problem. I have suffered from this since I woke up seeing flashing lights when I was 5 years old (I am now 45). It's never gotten any better or worse, but is always there - especially when it's dark or against a white background. Any eye doctor I ever mentioned it to or my family just shrugged and looked at me as if I was crazy. I've just learned to live with it and try to ignore it. Finally a few years ago an optician said he had it too and that it was "inner outer retinal misfiring," but there's not much on the Inernet about it. I am very nearsighted (-12 in both eyes), but can thankfully see fine with contact lenses/glasses, despite an astigmatism. It's interesting that you mention migranes as my mother, grandmother and I all get them (infrequently) and they come with aura, but I don't get pain.

Can you see the same moving dots with your eyes open and closed? I can focus on one and see the same thing when I close my eyes, which is very odd.

It's good to know that there are some people out there with this problem, as I thought I was alone. But I'm sorry that I have no advice for curing it.

Christine N.
From:(Anonymous)
Date:July 22nd, 2010 03:42 am (UTC)

Re: Photopsia but no RP

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I am soooo jealous! I am 20 years old. I have had this problem for as long as I can remember. I used to love watching the colorful swirls at night. I used to have better than perfect vision then. Then, I don't know when it happened, the pattern changed. I see colorful static that I can't focus on. But on the contrary, I developed dark masses that swirl around the peripheral vision, which I focus on by NOT looking at it (they shift when I do). I miss my personal kaleidoscope.

It is nice to know that I am not the only one. I wonder what it is. Mine became very annoying. From a few swirls, the static obstructs my vision as if I am looking through a fine mesh. I really remember how they looked when I was very young. I loved it. They seemed to have their own flight pattern like migrating birds.
From:(Anonymous)
Date:July 22nd, 2010 03:45 am (UTC)

Re: Photopsia but no RP

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continuing my post above:
I haven't been diagnosed with anything. I haven't been to an optometrist in a while and when I was they checked the usual, which doesn't solve the photopsia issue.


-Tatyana B.
From:lili256
Date:June 28th, 2014 03:06 pm (UTC)

Re: Photopsia but no RP

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Hello Please can you tell me if your symptoms resolved or if you ever got a diagnosis ? Thank you
From:lili256
Date:June 28th, 2014 03:10 pm (UTC)

Re: Photopsia but no RP

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Hello. I have the dame symptoms. Did your symptoms resolve or did you get a diagnosis ? Many thanks.
From:(Anonymous)
Date:October 2nd, 2008 05:44 pm (UTC)

RP

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I have never heard of this, yet I believe that I do have what you are talking about. I was diagnosed five months ago, and find it hard to believe that I even have such a thing.. my guess is you have felt that way before as well. I am 20 years old, and haven't had a lot of time to gather insight to this disease. I havent been diagnosed as recessive or dominant, and at this time my RP is too new to diagnose. I am interested if you have any comments, or anything to say that would help me at this time. Thank you. I never realized that there were so many others out there dealing with RP.
From:clmrn6797
Date:September 12th, 2009 02:47 pm (UTC)

Treatment of Photopsia

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Hi David,
I am a FNP student and have just encountered this problem in clinical this week. The patient was a 69 year old female with RP and constant photopsia. My preceptor tried her on many things to try to relieve the photopsia and found that only Lorazepam 2mg two times daily helped. Unfortunately, Lorazepam is highly sedating and can make you dizzy. We were seeing this patient due to a fall with a fractured rib which was most likely from the side effects of the medication. I would be interested to hear if you have found a treatment.
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From:davidbr1
Date:August 8th, 2010 05:22 pm (UTC)

Re: Treatment of Photopsia

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Hi
Apologies for the delay in responding! Actually I am still taking Phenytoin, and to be honest it only gives me minimal benefit. The photopsia has got steadily worse since I posted this, but no other treatment has been suggested.

I will be making an appointment to see my ophthalmologist again soon, but I am not optimistic about any good news.
From:(Anonymous)
Date:September 16th, 2009 01:07 am (UTC)
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My husband has photopsia. He describes his symptoms very similar to yours. He has purple flashing lights approximatly 5 cycles per second. It impedes him from seeing clearly. The flashing lights are superimposed over everything he sees. He also has a lot of trouble with glare. He has tried Dilantin and it didn't help at all. If anyone has had any success with any thing, please comment. He has tried accupuncture and is trying herbal products, and now chiropractic care. We are desperate. Has any one been cured from this disorder? Thanks.
From:(Anonymous)
Date:October 24th, 2009 05:30 am (UTC)

purple flashing lights

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my husband has the same symptoms you are describing. He has had to stop working because he can no longer read or do anytype of work that requires visual accuity. He has tried accupuncture, and herbs, and dilantin and Atenolol with no resolution to the purple flashing lights. they have diagnosed it as possibly being a neuronal macular dystrophy. they told him he has a very unusual case, and he will probably never meet anyone else with the same symptoms. the doctors seemed to be stumped. He went to a football game and when he looked into binoculars he discovered the flashing lights in the center of his vision seemed to get smaller in diameter. They never stop flashing unless he is asleep. He has also tried chiropractic care, accupressure, and healing touch. we are still searching for some answers. If anyone has had any success, please let us know.
From:(Anonymous)
Date:June 11th, 2010 12:39 am (UTC)
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I have the same experience with my RP. Doctors have told me that it is essentially a mixture of my brain putting information where little or none is present, and some physical phenomena as well. I too notice that the flashing worsens during stressful times. I liken it to tinnitus, which I also have a slight amount of, inthat when the flashing gets irritating / a focal point of my day, it appears worse. Sometimes I don't notice it at all just because I'm so used to it, but it's always there. Nothing but relaxation and reducing daily stress aleviates the flashing. Even that only goes so far.

J a s o n . D e C a m I l l I s AT g m a I l DOT c o m
From:(Anonymous)
Date:April 21st, 2011 11:17 pm (UTC)
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I too see these flashing lights(photopsia) and it is ALL the time eyes open or shut.
Been goin to the eye doc for 3weeks now and today i did an Angiogram
and finally an diagnosis!MEWDS (google it!)they are positive my vision will be restored and the lights will stop.....
Although he is going to be watching me for the next few months, he still sounds concerned about optic neuritis which is a preceptor to MS.
Good luck too all
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From:davidbr1
Date:April 22nd, 2011 09:10 pm (UTC)
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Thanks for the information. I will look into this.

I hope that you manage to get some treatment that works for you.
From:(Anonymous)
Date:May 31st, 2012 04:24 am (UTC)
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I have come full circle with photopsia. Fifteen years ago, the opthomologist at Mayo said nothing was wrong with my eyes and sent me to the neurologist who called the constant flickering in my eyes "scintillating scotoma." caused by some sort of problem in the visual cortex. I went the round of neurologists, with seizure drugs, migraine drugs, etc. All along, I was suspecting RP, since it runs in my family but none of the many opthos I consulted bothered to do the extensive testing required. Finally I DEMANDED to be tested for RP because I realized my pheripheral vision had gotten poor. I had had night blindness for decades.Sure enough! I was still puzzled by the constant flickering lights until I FINALLY found reference to it on the Cleveland Clinic website and finally, here. I developed RP very late in life (at age 60), as my father had. I recently spent two weeks with Dr. Otte in West Virginia. He treats only eye diseases with accupuncture. Everyone else who was there when I was had great improvement, but unfotunately, although my visual acuity improved, there was no improvement in peripheral vision. Perhaps this was because of my age (75).I am hopeful, however, that the treatments may keep the condition from deteriorating more. If so, I will consider it a success. For the first year or so that I had the photosia (I only learned the name of these "lights" recently, I was suicidal. Gradually, I have simply learned to live with it. After cataract surgery all of my RP symptoms worsened and peripheral vision became poor up and down as well as sideways. This is very difficult because I can't see clearly where I'm walking and usually use a cane or walker. I still drive in daylight in familiar areas, no freeways or heavy traffic. I try not to drive if it is overcast or rainy. Fortunately, I live in Phoenix where the sun almost always shines. I also have developed large c-shaped lights that run across my vision in pairs. I am using microstim which seems to lessen these. (www.naturaleyecare.com). I am glad to have found this site. I can't locate anyone in Phoenix who has this and who I can "talk to."
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