Discussion goes into antidepressants. Note that the Ladyofthelake did not know for sure that the antidepressants was the cause. We have more information now that the types of antidepressants she was taking has caused in some these visuals.
The link does not work when pasted here so have to paste the enitre post thread that was cached. It does not show up directly as it was one that was lost.
Visual snow or static
> Discussion
> It is "snowing" here in Finland too!
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ladyofthelake
Unregistered User
(9/9/01 3:50 pm)
Reply It is "snowing" here in Finland too!
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Hello everybody!
I´m a 38 years old female from Finland and have been suffering from strange visual disturbances since October 1999. I´ve been searching for a while through Internet to find people with similar symptoms and finally found this site. I´m sorry, my English is not so good but I´ll try my best...My visual symptoms began a year after I started having tinnitus in both of ears. It all started to me with a lot of stress and worry about my health. These visuals are present 24/7 and occur in both eyes and in each eye when the other eye is covered as well as eyes closed.
I have snow in my visual fields. Actually it looks like a snowstorm. I see flashes of colored lights (green, red, yellow, blue etc.). My vision is vibrating and wavy all the time but especially at night. I get strong negative (complementary colors) afterimages of almost everything I look at in bright as well as in dim lighting. In the morning as I wake up and open my eyes there is a black quickly disappearing cobweb-like image in the visual fields. I sometimes see this cobweb during the day but it is red or green and it looks like there was fluid running around! Moving objects leave a trail behind them. My eyes are extremely sensitive to light and looking at light induces zillions of colored "sparkles" Oh well, I could go on and on with these visuals but I´ll move on...
I´ve had a lot of medical testing including three MRIs of the brain, two EEGs, two VEPs, SEP, SPECT, MEG, PET, two lumbar punctures, several thorough neurological and eye examinations and lots of bloodwork. I´ve been examined by top level specialists: neurologists, neuro-ophthalmologists and ophthalmologists. My first MRI showed some lesions called "unidentified bright objects" (UBOs) in the white matter. MS and other demyelinating diseases were ruled out twice. My eyes are exceptionally dry but otherwise healthy.EEG showed some mild abnormal activity but it was not epilepsy. There was a 10 % hyperperfusion of the occipital cortex found in PET but nothing conclusive though it is hyperactive somehow. These specialists have told me that my "condition" is very unusual but they seem to think it is nothing to be worried about. I´ve got a diagnosis of "status migranosus susp". I think it means persistent migraine but in my case I don´t have the headache. I´ve had a migraine with aura since my early childhood (once or twice a month) but there is always a terrible headache following the visual symptoms in my "normal" migraine. Besides, my visuals are completely different from the usual migraine eye symptoms.
I take antidepressant Zoloft (SSRI) 100mg for depression and Emconcor (Beta-blocker) 5mg to prevent migraine. I just weaned myself of Lamictal (an antiepileptic) because it didn´t help my visuals. Luckily my depression is under control though it makes me very tired to search for some answers. I would really like to know what´s wrong with me especially because these visuals seem to get worse in the long run. I´m afraid of going blind.
I´m so glad I found this forum since I´ve felt so alone. I have been told so many times by the doctors they dont have a clue what´s going on with me. There are about 5,1 million people here in Finland and so far I haven´t found a companion in misfortune. I´m sorry about the long post but I just needed to vent... Thank you so much for reading this. Im looking forward to hearing from you all. Hope you are all well!
Hanna
orla weinhold
Unregistered User
(9/9/01 17:16)
Reply to Hanna
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I am very sorry to hear that you are having so much trouble. I can certainly relate. I have had a problem with my vision now for 11 years and like you have a history of occular migraine. My problem involves not being able to go out in bright light without being on Dilantin (seizure drug) and sunglasses. My vision breaks up and I see moving kaelidoscope stuff. Like you I've seen many Docs-neuros, neuro-opth, regular eye Docs, not to mention psychiatrists (this condition triggered a bad anxiety and depression so am on meds for that too). The last neuro I saw told me that I have a hyperactivity of the neurons in the occiptical cortex and the Dilantin is working by suppressing them. It's only now that I am feeling less scared of it and more accepting of it. I hope that you will feel better soon
Orla
rys
Unregistered User
(9/10/01 15:06)
Reply re:It is "snowing" here in Finland too!
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Hanna,
You're English is just fine. It's uncanny that almost everyone here has tinnitus. I developed floaters first, and tinnitus a few months later, and then the snow. Can you tell me if you have problems with your jaw, or if you've been diagnosed with a TMJ (temporo-mandibular joint disorder). ex: do you have problems opening / closing your jaw, or do you feel / hear a grinding sound? I have a sneaky suspision that the root cause of this could be TMJ related.
Rob.
rys
Unregistered User
(9/10/01 15:0
Reply my english
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oops, I just my English needs work! That last message should read: Your English is just fine!
ladyofthelake
Unregistered User
(9/12/01 17:37)
Reply Thank you Orla
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I also wear sunglasses outdoors and indoors as well. My eyes often feel "strange" as if they were irritated or something like that. It is hard to explain. I think it is natural that these kind of conditions trigger a lot of anxiety and depression. It is hard to ignore the symptoms and go on with your life without worrying.I have noticed that the more I pay attention to these visuals the more anxious I get. May I ask you a question? Have you ever been told by the psychiatrists that your visual symptoms are psychosomatic in nature? I have been told so by some psychiatrists and it makes me very angry. Take care.
Hanna
ladyofthelake
Unregistered User
(9/12/01 18:16)
Reply Hi Rob
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I am sorry I have neither problems with my jaw nor do I have TMJ. My tinnitus began after a series of flu-like symptoms with earpain after I had a flu-vaccine. I was told by the ear specialists that there was something going on in my inner ear, maybe a virus attacking. It indeed is strange that so many of us have tinnitus. Maybe in some cases there is a connection with jaw problems/TMJ and visual symptoms and tinnitus. There may be several causes of these strange symptoms. One thing I have been thinking about is that hearing and vision "areas" are located near to each other in the brain. What if our visual symptoms are
"the tinnitus of the eyes"? Maybe there is some sort of a functional disturbance in that area of the brain. This is a guessing game. Hope to hear from you soon.
Hanna
rys14
Registered User
Posts: 8
(9/14/01 9:24)
Reply more snow
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Hello Hanna,
George Farmer did some survey's with over 30 participants and ~80% of the people had tinnitus. Very strange. I am trying to get an MRI booked for myself, but the waiting list is very long. But from what other people are saying, their MRI's / almost every other test show nothing of significance (which is probably a good thing!) By the way, do you have floaters?
There is actually some research being done at the university of buffalo linking tinnitus and visual phenomena:
www.buffalo.edu/research/...logy.shtml
I have talked to Dr. Salvi at buffalo via email, and this was the first time he had heard of the association between visual abnormalities and tinnitus.
I'm still searching for answers.
Take care, and keep in touch.
Rob.
ladyofthelake
Unregistered User
(9/17/01 17:24)
Reply Floaters
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Hello Rob,
Thank you for the interesting link. It is good that somebody is doing research on tinnitus and visual stuff. I also think, conserning George Farmer´s survey results, there really must be at least some kind of connection between tinnitus and visuals. It just can not be a coincidence! I´m used to tinnitus but there is a little hearing loss in low frequencies and that worries me a lot.
I have had three MRIs and in my opinion it is one of the easiest ways (no radiation, no pain) to "look" at your brain. It made me feel relieved to know there was nothing sinister going on in the brain.
About floaters: Yes, I have had them for a long time but I noticed an increase in them at the same time my visuals started. They do not bother me but bright lights and sun are horrible to my eyes. Do you have problems with bright lights?
I´m going to have an appointment with my neuro Wednesday this week to have some test results (DNA bloodwork) back and it makes me a little nervous.
Take care.
Hanna
EeLsMaN
Registered User
Posts: 14
(9/18/01 4:26)
Reply blood tests
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Hi Lady,
I've just had blood tests, to test for autoimmune conditions in my retinas...
ophthalmology.ucdmc.ucdav...sting.html
What are these blood tests your getting testing for??
You mentioned you had a Retinography, is that an ERG (Electro Retinagram), because I also had this as I'm a snow sufferer and it was abnormal, the rods in my retinas arent functioning.
Brad.
rys14
Registered User
Posts: 9
(9/19/01 15:39)
Reply Re: Floaters
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Hello Hanna,
I'm not sure if bright lights bother me more than before. What sort of problems do you have with the bright lights?
I also get wierd 'sun-spots' out of the blue, even when I don't stare at any light, I think this happened more when I think about it or am stressed out.
I've had tinnitus for 5-6 years now, I'm also (sort of) used to it.
By the way, how did the blood tests go?
Also, I'm setting up an information page for visual snow, its temporarily at:
64.231.34.213/vs/
take care,
Rob.
ladyofthelake
Unregistered User
(9/21/01 15:33)
Reply blood tests
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Hello there EeLsMaN,
I got my bloodtestresults back on Wednesday. I had an appointment with my new neuro. She wanted to rule out some rare genetic disorders in my DNA, namely CADASIL and MELAS. Cadasil means Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy. MELAS stands for Mitochondrial Encephalomyopathy Lactic Acidosis and Stroke-like Episodes. Both are very serious, incurable conditions and and at least CADASIL is hereditary. These tests were made because there were some unidentified bright objects in my MRI of the brain. CADASIL and MELAS can also cause visual symptoms and a lot of other symptoms too. Iam very happy my test results were negative.
Iam sorry, there must be some sort of a misunderstanding. I have not had a Retinography or ERG but I am probably going to have one soon.
I found your link very interesting and I am going to show it to my neuro.
Do you have other visuals besides the snowing, like strong afterimages or trails? Hope to hear from you soon!
Lady Hanna
ladyofthelake
Unregistered User
(9/21/01 16:00)
Reply To Rob
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Hi Rob,
I have broblems with bright lights and sun because my eyes are extremely sensitive to light. Looking at any light induces zillions of colored sparkles, I think they are called phosphenes. Are your "sun-spots" phosphenes? I also get these strange sparkles even in darkness.
I got my blood test results back and I am really happy they were negative. My neuro wanted to rule out two serious conditons: CADASIL and MELAS because they can also cause visual symptoms. My new neuro wants me to have still another lumbar puncture. She wants to rule out MS though it has been ruled out twice already. I hate lumbar punctures. Last time I got a terrible post-lumbar-punction-headache and had to go to the ER for a blood-patch. Have you had a lumbar puncture?
Your information page for visual snow is very informative. It gave me a lot to think about.
Looking forward to hearing from you,
Hanna
MelC
Unregistered User
(9/21/01 21:53)
Reply same visuals as lady of the lake
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Hi Lady,
I have almost the exact same visuals you describe and they came after a period of high stress and worrying about my health. Ironic, huh? I have also had an MRI, EEG, CT and bloodwork and nothing could be found. I am seeing a new neuro-ophthamologist in a couple weeks to see what his opinion is. I am also glad my tests were negative, but would like an explanation and assurance that things will not get worse.
I have also found that I have a tendency to develop symptoms that I read about - even some of my visuals which makes me question the psychosomatic nature of them.
I am also on Zoloft. I noticed an increased sensitivity to light when I started it. Lights seem very white. Do you see that as well.
Docs have told me "status migraine aura" too. I just wish it would go away. I have met a few others on the web with similar symptoms are all have healthy brains.
I just wish it would end.
M.
ladyofthelake
Unregistered User
(9/22/01 16:20)
Reply To MelC
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Hi MelC,
I also would like to know what is going on with me, especially because my visuals seem to be getting worse. My neuro and eye docs have tried to reassure me that my visuals are nothing to be worried about but I can not help worrying..
I can relate to developing new symptoms, especially of serious illness. I had my first MRI of the brain in 1998 because I started to have tinnitus and my neuro wanted to rule out brain tumors etc and make me calm down. Unfortunately there was something in my MRI (Unidentified Bright Objects "UBOs") in the white matter which led my neuro to suspect possible MS. I rushed into library and made some "research" of my own about MS. Soon I was having all the possible symptoms of MS and my nightmare began. I went through a very stressfull year during of which I had all the possible tests to rule out MS. All the tests were negative but my "MS symptoms" went on and on. Finally I was convinced I do not have it (several specialists told me so). I went into a very deep depression though I should have been happy.
I had to start an antidepressant medication and after a while my visual disturbances started.
My visual disturbances may have something to do with stress and worry. On the other hand my visuals began after I started depression medication, so I really can´t tell... I have done some research, again, and visual disturbances have been reported to be side-effects of many antidepressants especially SSRIs like Zoloft and Paxil. I have tried some antidepressants (Remeron, Azona=Desyrel, Buspar.. and finally Zoloft. Remeron made me see colors brighter than they should be. That was followed by colored flashes and dots, visual snow, strong afterimages, trails and wavy and vibrating vision. Desyrel can cause visual trails and strong afterimages. My eyes went dry and extremely sensitive to light and they still are. Now I am on Zoloft and there is no change except my depression is now under control. Have you tried other antidepressants besides Zoloft? Could you please describe your visuals; how do they differ from mine?
I have had a migraine with aura since childhood but these visuals are something else. Some neuros have told me it is possible to have a "migraine aura status" for such a long time but my new neuro told me Wednesday no migraine could last that long. Who knows? It is a guessing game.
Sorry for the long post but I am so "happy" (you know what I mean?!) I am not alone with this persistent visual show. This is a great forum!
Now I am in the middle of a bad flu. Hope you are well,
Lady Hanna
georgefarmer
ezOP
Posts: 15
(9/22/01 16:30)
Reply Re: To MelC
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I have taken Paxil for last two years. Remeron may have started my snow, kept me groggy and Zoloft gave me heart palpations felt like I was electrified.
George
rys14
Registered User
Posts: 10
(9/22/01 19:0
Reply Re: To Rob
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Hanna,
Thanks for the info. I read about phosphenes a while ago, but I'm not sure if they are causing the sun-spots. It's strange because I don't get them for months, and then....they just start -> a few every hour. I think it may be related to stress. They have calmed down during the past couple weeks.
I have not had a lumbar puncture, and my docs have never mentioned MS. What sort of symptoms do you have to suggest MS? Glad to hear your blood tests were ok.
BTW, regarding the white matter, this paper mentioned that one person in the study had some nonspecific biparietal white matter lesions: Persistent positive visual phenomena in migraine: www.ncbi.nlm.nih.gov/entr...t=Abstract
It's also funny what Mel said about getting the symptoms you read. I also felt like that a few years ago. My doc mentioned that its called 'medical school syndrome'.
I had an EEG and evoked potential (visual+auditory) yesterday. The EEG was sort of freaky when they started flashing the lights. Normally, when my eyes are closed and the lights are on, I can see a redish-pink color. When they started to flash the lights on and off, I began to see red, then green, and then blue. It kind of scared me actually. Can anyone tell me what their EEG was like? I don't have the results back yet, but I don't expect anything strange to happen.
The more I read about other people's experience, the more similarities I find. There is a real chicken and egg situation here: did the snow start the stress or the stress start the snow. Also, did the SSRI cause the snow, or did the snow cause the depression that caused the need for an SSRI?
By the way, I finally got *something* of a diagnosis last week from an oral surgeon. He confirmed that I have some inflammation in the tempormadibular joint, and TMJ has been linked to tinnitus. I feel like this is the first breakthrough. I can make my tinnitus louder by opening my mouth/applying pressure to the TMJ. I'm hoping that fixing the TMJ will fix the tinnitus at the very least.
Rob.
Edited by: rys14 at: 9/22/01 7:12:04 pm
MelC
Unregistered User
(9/23/01 0:02)
Reply to Lady - our stories are very similar
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Lady,
I too, was afraid of MS and developed every symptom after reading about it. This was before the visuals started. My mom had been diagnosed with a rare cornea disease ( I don't have it) and I began obsessing over my eyes. I then developed floaters and read somewhere on the net that someone was worried about floaters being a symptom of MS (not the case). Of course I began obsessing about MS and my anxiety grew and grew. When I came down with a horrible flu and muscle cramps in my legs - it sent me over the edge. I had diagnosed myself as having MS within 24 hours. For 4 months I was tingly and numb, shaking, blurry vision, migraines, etc. etc. I finally asked my neuro for an MRI/MRA even though he was convinced it was anxiety. My MRI was completely normal. He put me on amitriptyline (an old antidepressant used to suppress migraines). Five days after starting the pills my most noticeable visual symptoms began. Here they are:
Lines of colors that move through my vision (most noticeable when I cover 1 eye)
Trails behind moving objects (started right after medicine but got MUCH worse after reading more about it)
Streaking lights (developed after reading about it)
Phosphenes (had those off and on before medicine but always when I was really panicking)
Snow - (started before medicine, but during high stress)
Flickering in peripheral vision (before medicine - during stress)
Strong afterimages (some before zoloft, but worse now also read about this and it's connection to zoloft before developing)
Light sensitivity (sun glare kills me - the afterimage is bright green and lasts for a long time)
Swirl of color that moves around in the dark (not every night, but some nights I see this with or without my eyes closed)
Obscured central vision at night (almost like a blind spot but only there in the dark)
I'm sure there are ones that I'm forgetting - it sometimes seems weird that I could have sooooo many symptoms and no one be able to tell me anything. I really have a gut feeling that stress and anxiety triggered some sort of chemical change in my brain that set this in motion. When you are under high stress you release adrenalin and cortisol. In large amounts over long periods of time - this may be damaging - possibly. I am far from being a doctor. I also think that part of my condition is psychosomatic - especially since it was an obsession with my mom's eye disease that triggered my whole health anxiety and I develop symptoms after reading about them - even visual ones.
Isn't it ironic that we both thought we had MS? The only difference is - I believed the MRI and my symptoms totally vanished the next day. Then of course, my anxiety found my vision and decided that was a place it could live in me for a while.
I have tried many antimigraine meds - most recently Depakote ( I think it is called Epilum in Europe). Is that the medication you tried? It did not work. I have heard that Diamox has been successful with trails and am curious about Dilantin that Orla mentioned.
I wonder about the zoloft. I tried not to take it but my depression over this had gotten so bad that I was not living my life. It's only been a few weeks on it and I am feeling better - but of course I think it is affecting my vision so who knows if I'll stay on it. How long have you been taking it? Have you tried quitting to see if it helped?
Sorry this is so long. I'm just amazed at how similar our stories are. It's funny - the other two people that have similar symptoms also believed they had MS for other reasons but then developed the visuals after their anxiety levels decreased with clean MRIs. Chemical reaction????? I just don't know.
Please e-mail me personally at corco6400@aol.com if you want to chat more.
I wish you well,
M.
MelC
Unregistered User
(9/23/01 0:07)
Reply to Rob - sunspots
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Hi Rob,
I get the sunspots too - It's like you've looked into the sun or bright light and see the dark after image. Mine flash and then fade away slowly. I have had some last for weeks though. You can relate those to migraines - even if you are not having the headache. My neuro explained that is a common symptom. However, mine lasting for weeks is not ordinary. And stress is a major trigger for migraines so that may be your problem. I wouldn't be worried if I were you. =)
M.
ladyofthelake
Unregistered User
(9/23/01 7:04)
Reply To George
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Thank you so much for starting this snow board! This is the first time in two years that I can discuss with people who understand these weird visual things.
I have tried some antidepressants and it seems I am quite sensitive to them. I easily get side-effects: Remeron made me tired and I gained a lot of weight. I also got those electric-shock-like sensations. Desyrel made me drowsy and nausea. Zoloft makes me sweat excessively...My psychiatrist says these visuals can not be induced by antidepressants but I do not agree with him. Of course, there are several possible explanations but I do not want to rule out anything unless I am sure of it.
Hanna
ladyofthelake
Unregistered User
(9/23/01 9:0
Reply To Rob: MS and EEG
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Hi Rob,
There were some lesions in the white matter in my first MRI. There are several explanations to the lesions and MS is one of them. I also know that migraineurs sometimes do have these spots in the white matter in MRI. In fact, the paper you mentioned about (thank you!) is one of the studies I have read about migraine and white matter abnormalities. I recall 10 to 20 % of migraineurs having these spots.
I have been through all the possible tests for MS and all the test results were negative. Tinnitus and visual symptoms are the only neurologic symtoms I have. I have been told by several specialist that tinnitus and these strange visuals are not the usual MS symptoms.MSers do have vision problems but the most common are double or blurred vision, optic neuritis and nystagmus. MS symptoms also usually come and go.. I know, it is sometimes difficult to make a diagnosis of MS but in my case I do not think it is MS.
Why is my new neuro still suspecting MS? I can understand her situation. It is quite frustrating for a medical specialist to tell the patient that there may be no firm diagnosis at all and possibly no cure either. Can you imagine, she even told me she "wishes" to be able to diagnose me as having MS because there would be some treatment and medication for it! I was shocked after her statement but I somehow understood her feelings of frustration and helplessness.
I can certainly relate to your experiences with EEG. I have had two EEGs; one "regular" and the other was a Quantitative EEG. The on and off flashing lights made me see some weird things too. I saw red, green and blue geometric patterns, quite psychedelic and yes, scary! The nurse told me that seeing colors or colored geometric patterns is a normal reaction to the visual stimuli in the EEG. Did you have that hyperventilation phase during the test? I was told to hyperventilate two minutes and they were the longest two minutes I have ever had. I had tingling in my face and it went numb. I almost passed out. Later I found out that there was some mild abnormal activity in the EEG during the hyperventilation but it was not epilepsy. I hope your EEG results are OK.
I think it would be great if you could get rid of tinnitus by fixing the TMJ problem. What if it could fix your visuals as well! Let´s hope so.
What a long post, huh. Take care,
Hanna
georgefarmer
ezOP
Posts: 16
(9/23/01 10:07)
Reply Re: To Rob: MS and EEG
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I want to also note that my snow came on after about a year of anxiety, stress, fatigue, tingling, pins and needles in legs, all together convinced me too that I might have MS. I also had great sleep problems and still have problems with many wake-ups, increased tinnitus, weird feelings in the head, headaches off and on, neck aches, on and on. Does stress cause snow? I doubt it, make it seem worse, probably. MS is a difficult target to hit and there are many things that cause similar symptoms. I am leaning as to a cause being a chronc infection of the brain and nervous system. By what who knows, but once it in its there to stay. Poor sleep, stress, worry all cause it to get worse and as the symptoms get worse, more stress and there you go. We have to eat right, sleep the best we can, exercise to keep the body strong and keep the immune system working against the bad boys. Of course it could be an immune system problem like MS but I feel othewise right now.
George Farmer
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Visual snow or static
> Discussion
> It is "snowing" here in Finland too!
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ladyofthelake
Unregistered User
(9/9/01 3:50 pm)
Reply It is "snowing" here in Finland too!
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Hello everybody!
I´m a 38 years old female from Finland and have been suffering from strange visual disturbances since October 1999. I´ve been searching for a while through Internet to find people with similar symptoms and finally found this site. I´m sorry, my English is not so good but I´ll try my best...My visual symptoms began a year after I started having tinnitus in both of ears. It all started to me with a lot of stress and worry about my health. These visuals are present 24/7 and occur in both eyes and in each eye when the other eye is covered as well as eyes closed.
I have snow in my visual fields. Actually it looks like a snowstorm. I see flashes of colored lights (green, red, yellow, blue etc.). My vision is vibrating and wavy all the time but especially at night. I get strong negative (complementary colors) afterimages of almost everything I look at in bright as well as in dim lighting. In the morning as I wake up and open my eyes there is a black quickly disappearing cobweb-like image in the visual fields. I sometimes see this cobweb during the day but it is red or green and it looks like there was fluid running around! Moving objects leave a trail behind them. My eyes are extremely sensitive to light and looking at light induces zillions of colored "sparkles" Oh well, I could go on and on with these visuals but I´ll move on...
I´ve had a lot of medical testing including three MRIs of the brain, two EEGs, two VEPs, SEP, SPECT, MEG, PET, two lumbar punctures, several thorough neurological and eye examinations and lots of bloodwork. I´ve been examined by top level specialists: neurologists, neuro-ophthalmologists and ophthalmologists. My first MRI showed some lesions called "unidentified bright objects" (UBOs) in the white matter. MS and other demyelinating diseases were ruled out twice. My eyes are exceptionally dry but otherwise healthy.EEG showed some mild abnormal activity but it was not epilepsy. There was a 10 % hyperperfusion of the occipital cortex found in PET but nothing conclusive though it is hyperactive somehow. These specialists have told me that my "condition" is very unusual but they seem to think it is nothing to be worried about. I´ve got a diagnosis of "status migranosus susp". I think it means persistent migraine but in my case I don´t have the headache. I´ve had a migraine with aura since my early childhood (once or twice a month) but there is always a terrible headache following the visual symptoms in my "normal" migraine. Besides, my visuals are completely different from the usual migraine eye symptoms.
I take antidepressant Zoloft (SSRI) 100mg for depression and Emconcor (Beta-blocker) 5mg to prevent migraine. I just weaned myself of Lamictal (an antiepileptic) because it didn´t help my visuals. Luckily my depression is under control though it makes me very tired to search for some answers. I would really like to know what´s wrong with me especially because these visuals seem to get worse in the long run. I´m afraid of going blind.
I´m so glad I found this forum since I´ve felt so alone. I have been told so many times by the doctors they dont have a clue what´s going on with me. There are about 5,1 million people here in Finland and so far I haven´t found a companion in misfortune. I´m sorry about the long post but I just needed to vent... Thank you so much for reading this. Im looking forward to hearing from you all. Hope you are all well!
Hanna
orla weinhold
Unregistered User
(9/9/01 17:16)
Reply to Hanna
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I am very sorry to hear that you are having so much trouble. I can certainly relate. I have had a problem with my vision now for 11 years and like you have a history of occular migraine. My problem involves not being able to go out in bright light without being on Dilantin (seizure drug) and sunglasses. My vision breaks up and I see moving kaelidoscope stuff. Like you I've seen many Docs-neuros, neuro-opth, regular eye Docs, not to mention psychiatrists (this condition triggered a bad anxiety and depression so am on meds for that too). The last neuro I saw told me that I have a hyperactivity of the neurons in the occiptical cortex and the Dilantin is working by suppressing them. It's only now that I am feeling less scared of it and more accepting of it. I hope that you will feel better soon
Orla
rys
Unregistered User
(9/10/01 15:06)
Reply re:It is "snowing" here in Finland too!
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Hanna,
You're English is just fine. It's uncanny that almost everyone here has tinnitus. I developed floaters first, and tinnitus a few months later, and then the snow. Can you tell me if you have problems with your jaw, or if you've been diagnosed with a TMJ (temporo-mandibular joint disorder). ex: do you have problems opening / closing your jaw, or do you feel / hear a grinding sound? I have a sneaky suspision that the root cause of this could be TMJ related.
Rob.
rys
Unregistered User
(9/10/01 15:0
Reply my english
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oops, I just my English needs work! That last message should read: Your English is just fine!
ladyofthelake
Unregistered User
(9/12/01 17:37)
Reply Thank you Orla
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I also wear sunglasses outdoors and indoors as well. My eyes often feel "strange" as if they were irritated or something like that. It is hard to explain. I think it is natural that these kind of conditions trigger a lot of anxiety and depression. It is hard to ignore the symptoms and go on with your life without worrying.I have noticed that the more I pay attention to these visuals the more anxious I get. May I ask you a question? Have you ever been told by the psychiatrists that your visual symptoms are psychosomatic in nature? I have been told so by some psychiatrists and it makes me very angry. Take care.
Hanna
ladyofthelake
Unregistered User
(9/12/01 18:16)
Reply Hi Rob
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I am sorry I have neither problems with my jaw nor do I have TMJ. My tinnitus began after a series of flu-like symptoms with earpain after I had a flu-vaccine. I was told by the ear specialists that there was something going on in my inner ear, maybe a virus attacking. It indeed is strange that so many of us have tinnitus. Maybe in some cases there is a connection with jaw problems/TMJ and visual symptoms and tinnitus. There may be several causes of these strange symptoms. One thing I have been thinking about is that hearing and vision "areas" are located near to each other in the brain. What if our visual symptoms are
"the tinnitus of the eyes"? Maybe there is some sort of a functional disturbance in that area of the brain. This is a guessing game. Hope to hear from you soon.
Hanna
rys14
Registered User
Posts: 8
(9/14/01 9:24)
Reply more snow
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Hello Hanna,
George Farmer did some survey's with over 30 participants and ~80% of the people had tinnitus. Very strange. I am trying to get an MRI booked for myself, but the waiting list is very long. But from what other people are saying, their MRI's / almost every other test show nothing of significance (which is probably a good thing!) By the way, do you have floaters?
There is actually some research being done at the university of buffalo linking tinnitus and visual phenomena:
www.buffalo.edu/research/...logy.shtml
I have talked to Dr. Salvi at buffalo via email, and this was the first time he had heard of the association between visual abnormalities and tinnitus.
I'm still searching for answers.
Take care, and keep in touch.
Rob.
ladyofthelake
Unregistered User
(9/17/01 17:24)
Reply Floaters
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Hello Rob,
Thank you for the interesting link. It is good that somebody is doing research on tinnitus and visual stuff. I also think, conserning George Farmer´s survey results, there really must be at least some kind of connection between tinnitus and visuals. It just can not be a coincidence! I´m used to tinnitus but there is a little hearing loss in low frequencies and that worries me a lot.
I have had three MRIs and in my opinion it is one of the easiest ways (no radiation, no pain) to "look" at your brain. It made me feel relieved to know there was nothing sinister going on in the brain.
About floaters: Yes, I have had them for a long time but I noticed an increase in them at the same time my visuals started. They do not bother me but bright lights and sun are horrible to my eyes. Do you have problems with bright lights?
I´m going to have an appointment with my neuro Wednesday this week to have some test results (DNA bloodwork) back and it makes me a little nervous.
Take care.
Hanna
EeLsMaN
Registered User
Posts: 14
(9/18/01 4:26)
Reply blood tests
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Hi Lady,
I've just had blood tests, to test for autoimmune conditions in my retinas...
ophthalmology.ucdmc.ucdav...sting.html
What are these blood tests your getting testing for??
You mentioned you had a Retinography, is that an ERG (Electro Retinagram), because I also had this as I'm a snow sufferer and it was abnormal, the rods in my retinas arent functioning.
Brad.
rys14
Registered User
Posts: 9
(9/19/01 15:39)
Reply Re: Floaters
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Hello Hanna,
I'm not sure if bright lights bother me more than before. What sort of problems do you have with the bright lights?
I also get wierd 'sun-spots' out of the blue, even when I don't stare at any light, I think this happened more when I think about it or am stressed out.
I've had tinnitus for 5-6 years now, I'm also (sort of) used to it.
By the way, how did the blood tests go?
Also, I'm setting up an information page for visual snow, its temporarily at:
64.231.34.213/vs/
take care,
Rob.
ladyofthelake
Unregistered User
(9/21/01 15:33)
Reply blood tests
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Hello there EeLsMaN,
I got my bloodtestresults back on Wednesday. I had an appointment with my new neuro. She wanted to rule out some rare genetic disorders in my DNA, namely CADASIL and MELAS. Cadasil means Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy. MELAS stands for Mitochondrial Encephalomyopathy Lactic Acidosis and Stroke-like Episodes. Both are very serious, incurable conditions and and at least CADASIL is hereditary. These tests were made because there were some unidentified bright objects in my MRI of the brain. CADASIL and MELAS can also cause visual symptoms and a lot of other symptoms too. Iam very happy my test results were negative.
Iam sorry, there must be some sort of a misunderstanding. I have not had a Retinography or ERG but I am probably going to have one soon.
I found your link very interesting and I am going to show it to my neuro.
Do you have other visuals besides the snowing, like strong afterimages or trails? Hope to hear from you soon!
Lady Hanna
ladyofthelake
Unregistered User
(9/21/01 16:00)
Reply To Rob
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Hi Rob,
I have broblems with bright lights and sun because my eyes are extremely sensitive to light. Looking at any light induces zillions of colored sparkles, I think they are called phosphenes. Are your "sun-spots" phosphenes? I also get these strange sparkles even in darkness.
I got my blood test results back and I am really happy they were negative. My neuro wanted to rule out two serious conditons: CADASIL and MELAS because they can also cause visual symptoms. My new neuro wants me to have still another lumbar puncture. She wants to rule out MS though it has been ruled out twice already. I hate lumbar punctures. Last time I got a terrible post-lumbar-punction-headache and had to go to the ER for a blood-patch. Have you had a lumbar puncture?
Your information page for visual snow is very informative. It gave me a lot to think about.
Looking forward to hearing from you,
Hanna
MelC
Unregistered User
(9/21/01 21:53)
Reply same visuals as lady of the lake
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Hi Lady,
I have almost the exact same visuals you describe and they came after a period of high stress and worrying about my health. Ironic, huh? I have also had an MRI, EEG, CT and bloodwork and nothing could be found. I am seeing a new neuro-ophthamologist in a couple weeks to see what his opinion is. I am also glad my tests were negative, but would like an explanation and assurance that things will not get worse.
I have also found that I have a tendency to develop symptoms that I read about - even some of my visuals which makes me question the psychosomatic nature of them.
I am also on Zoloft. I noticed an increased sensitivity to light when I started it. Lights seem very white. Do you see that as well.
Docs have told me "status migraine aura" too. I just wish it would go away. I have met a few others on the web with similar symptoms are all have healthy brains.
I just wish it would end.
M.
ladyofthelake
Unregistered User
(9/22/01 16:20)
Reply To MelC
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Hi MelC,
I also would like to know what is going on with me, especially because my visuals seem to be getting worse. My neuro and eye docs have tried to reassure me that my visuals are nothing to be worried about but I can not help worrying..
I can relate to developing new symptoms, especially of serious illness. I had my first MRI of the brain in 1998 because I started to have tinnitus and my neuro wanted to rule out brain tumors etc and make me calm down. Unfortunately there was something in my MRI (Unidentified Bright Objects "UBOs") in the white matter which led my neuro to suspect possible MS. I rushed into library and made some "research" of my own about MS. Soon I was having all the possible symptoms of MS and my nightmare began. I went through a very stressfull year during of which I had all the possible tests to rule out MS. All the tests were negative but my "MS symptoms" went on and on. Finally I was convinced I do not have it (several specialists told me so). I went into a very deep depression though I should have been happy.
I had to start an antidepressant medication and after a while my visual disturbances started.
My visual disturbances may have something to do with stress and worry. On the other hand my visuals began after I started depression medication, so I really can´t tell... I have done some research, again, and visual disturbances have been reported to be side-effects of many antidepressants especially SSRIs like Zoloft and Paxil. I have tried some antidepressants (Remeron, Azona=Desyrel, Buspar.. and finally Zoloft. Remeron made me see colors brighter than they should be. That was followed by colored flashes and dots, visual snow, strong afterimages, trails and wavy and vibrating vision. Desyrel can cause visual trails and strong afterimages. My eyes went dry and extremely sensitive to light and they still are. Now I am on Zoloft and there is no change except my depression is now under control. Have you tried other antidepressants besides Zoloft? Could you please describe your visuals; how do they differ from mine?
I have had a migraine with aura since childhood but these visuals are something else. Some neuros have told me it is possible to have a "migraine aura status" for such a long time but my new neuro told me Wednesday no migraine could last that long. Who knows? It is a guessing game.
Sorry for the long post but I am so "happy" (you know what I mean?!) I am not alone with this persistent visual show. This is a great forum!
Now I am in the middle of a bad flu. Hope you are well,
Lady Hanna
georgefarmer
ezOP
Posts: 15
(9/22/01 16:30)
Reply Re: To MelC
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I have taken Paxil for last two years. Remeron may have started my snow, kept me groggy and Zoloft gave me heart palpations felt like I was electrified.
George
rys14
Registered User
Posts: 10
(9/22/01 19:0
Reply Re: To Rob
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Hanna,
Thanks for the info. I read about phosphenes a while ago, but I'm not sure if they are causing the sun-spots. It's strange because I don't get them for months, and then....they just start -> a few every hour. I think it may be related to stress. They have calmed down during the past couple weeks.
I have not had a lumbar puncture, and my docs have never mentioned MS. What sort of symptoms do you have to suggest MS? Glad to hear your blood tests were ok.
BTW, regarding the white matter, this paper mentioned that one person in the study had some nonspecific biparietal white matter lesions: Persistent positive visual phenomena in migraine: www.ncbi.nlm.nih.gov/entr...t=Abstract
It's also funny what Mel said about getting the symptoms you read. I also felt like that a few years ago. My doc mentioned that its called 'medical school syndrome'.
I had an EEG and evoked potential (visual+auditory) yesterday. The EEG was sort of freaky when they started flashing the lights. Normally, when my eyes are closed and the lights are on, I can see a redish-pink color. When they started to flash the lights on and off, I began to see red, then green, and then blue. It kind of scared me actually. Can anyone tell me what their EEG was like? I don't have the results back yet, but I don't expect anything strange to happen.
The more I read about other people's experience, the more similarities I find. There is a real chicken and egg situation here: did the snow start the stress or the stress start the snow. Also, did the SSRI cause the snow, or did the snow cause the depression that caused the need for an SSRI?
By the way, I finally got *something* of a diagnosis last week from an oral surgeon. He confirmed that I have some inflammation in the tempormadibular joint, and TMJ has been linked to tinnitus. I feel like this is the first breakthrough. I can make my tinnitus louder by opening my mouth/applying pressure to the TMJ. I'm hoping that fixing the TMJ will fix the tinnitus at the very least.
Rob.
Edited by: rys14 at: 9/22/01 7:12:04 pm
MelC
Unregistered User
(9/23/01 0:02)
Reply to Lady - our stories are very similar
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Lady,
I too, was afraid of MS and developed every symptom after reading about it. This was before the visuals started. My mom had been diagnosed with a rare cornea disease ( I don't have it) and I began obsessing over my eyes. I then developed floaters and read somewhere on the net that someone was worried about floaters being a symptom of MS (not the case). Of course I began obsessing about MS and my anxiety grew and grew. When I came down with a horrible flu and muscle cramps in my legs - it sent me over the edge. I had diagnosed myself as having MS within 24 hours. For 4 months I was tingly and numb, shaking, blurry vision, migraines, etc. etc. I finally asked my neuro for an MRI/MRA even though he was convinced it was anxiety. My MRI was completely normal. He put me on amitriptyline (an old antidepressant used to suppress migraines). Five days after starting the pills my most noticeable visual symptoms began. Here they are:
Lines of colors that move through my vision (most noticeable when I cover 1 eye)
Trails behind moving objects (started right after medicine but got MUCH worse after reading more about it)
Streaking lights (developed after reading about it)
Phosphenes (had those off and on before medicine but always when I was really panicking)
Snow - (started before medicine, but during high stress)
Flickering in peripheral vision (before medicine - during stress)
Strong afterimages (some before zoloft, but worse now also read about this and it's connection to zoloft before developing)
Light sensitivity (sun glare kills me - the afterimage is bright green and lasts for a long time)
Swirl of color that moves around in the dark (not every night, but some nights I see this with or without my eyes closed)
Obscured central vision at night (almost like a blind spot but only there in the dark)
I'm sure there are ones that I'm forgetting - it sometimes seems weird that I could have sooooo many symptoms and no one be able to tell me anything. I really have a gut feeling that stress and anxiety triggered some sort of chemical change in my brain that set this in motion. When you are under high stress you release adrenalin and cortisol. In large amounts over long periods of time - this may be damaging - possibly. I am far from being a doctor. I also think that part of my condition is psychosomatic - especially since it was an obsession with my mom's eye disease that triggered my whole health anxiety and I develop symptoms after reading about them - even visual ones.
Isn't it ironic that we both thought we had MS? The only difference is - I believed the MRI and my symptoms totally vanished the next day. Then of course, my anxiety found my vision and decided that was a place it could live in me for a while.
I have tried many antimigraine meds - most recently Depakote ( I think it is called Epilum in Europe). Is that the medication you tried? It did not work. I have heard that Diamox has been successful with trails and am curious about Dilantin that Orla mentioned.
I wonder about the zoloft. I tried not to take it but my depression over this had gotten so bad that I was not living my life. It's only been a few weeks on it and I am feeling better - but of course I think it is affecting my vision so who knows if I'll stay on it. How long have you been taking it? Have you tried quitting to see if it helped?
Sorry this is so long. I'm just amazed at how similar our stories are. It's funny - the other two people that have similar symptoms also believed they had MS for other reasons but then developed the visuals after their anxiety levels decreased with clean MRIs. Chemical reaction????? I just don't know.
Please e-mail me personally at corco6400@aol.com if you want to chat more.
I wish you well,
M.
MelC
Unregistered User
(9/23/01 0:07)
Reply to Rob - sunspots
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Hi Rob,
I get the sunspots too - It's like you've looked into the sun or bright light and see the dark after image. Mine flash and then fade away slowly. I have had some last for weeks though. You can relate those to migraines - even if you are not having the headache. My neuro explained that is a common symptom. However, mine lasting for weeks is not ordinary. And stress is a major trigger for migraines so that may be your problem. I wouldn't be worried if I were you. =)
M.
ladyofthelake
Unregistered User
(9/23/01 7:04)
Reply To George
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Thank you so much for starting this snow board! This is the first time in two years that I can discuss with people who understand these weird visual things.
I have tried some antidepressants and it seems I am quite sensitive to them. I easily get side-effects: Remeron made me tired and I gained a lot of weight. I also got those electric-shock-like sensations. Desyrel made me drowsy and nausea. Zoloft makes me sweat excessively...My psychiatrist says these visuals can not be induced by antidepressants but I do not agree with him. Of course, there are several possible explanations but I do not want to rule out anything unless I am sure of it.
Hanna
ladyofthelake
Unregistered User
(9/23/01 9:0
Reply To Rob: MS and EEG
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Hi Rob,
There were some lesions in the white matter in my first MRI. There are several explanations to the lesions and MS is one of them. I also know that migraineurs sometimes do have these spots in the white matter in MRI. In fact, the paper you mentioned about (thank you!) is one of the studies I have read about migraine and white matter abnormalities. I recall 10 to 20 % of migraineurs having these spots.
I have been through all the possible tests for MS and all the test results were negative. Tinnitus and visual symptoms are the only neurologic symtoms I have. I have been told by several specialist that tinnitus and these strange visuals are not the usual MS symptoms.MSers do have vision problems but the most common are double or blurred vision, optic neuritis and nystagmus. MS symptoms also usually come and go.. I know, it is sometimes difficult to make a diagnosis of MS but in my case I do not think it is MS.
Why is my new neuro still suspecting MS? I can understand her situation. It is quite frustrating for a medical specialist to tell the patient that there may be no firm diagnosis at all and possibly no cure either. Can you imagine, she even told me she "wishes" to be able to diagnose me as having MS because there would be some treatment and medication for it! I was shocked after her statement but I somehow understood her feelings of frustration and helplessness.
I can certainly relate to your experiences with EEG. I have had two EEGs; one "regular" and the other was a Quantitative EEG. The on and off flashing lights made me see some weird things too. I saw red, green and blue geometric patterns, quite psychedelic and yes, scary! The nurse told me that seeing colors or colored geometric patterns is a normal reaction to the visual stimuli in the EEG. Did you have that hyperventilation phase during the test? I was told to hyperventilate two minutes and they were the longest two minutes I have ever had. I had tingling in my face and it went numb. I almost passed out. Later I found out that there was some mild abnormal activity in the EEG during the hyperventilation but it was not epilepsy. I hope your EEG results are OK.
I think it would be great if you could get rid of tinnitus by fixing the TMJ problem. What if it could fix your visuals as well! Let´s hope so.
What a long post, huh. Take care,
Hanna
georgefarmer
ezOP
Posts: 16
(9/23/01 10:07)
Reply Re: To Rob: MS and EEG
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I want to also note that my snow came on after about a year of anxiety, stress, fatigue, tingling, pins and needles in legs, all together convinced me too that I might have MS. I also had great sleep problems and still have problems with many wake-ups, increased tinnitus, weird feelings in the head, headaches off and on, neck aches, on and on. Does stress cause snow? I doubt it, make it seem worse, probably. MS is a difficult target to hit and there are many things that cause similar symptoms. I am leaning as to a cause being a chronc infection of the brain and nervous system. By what who knows, but once it in its there to stay. Poor sleep, stress, worry all cause it to get worse and as the symptoms get worse, more stress and there you go. We have to eat right, sleep the best we can, exercise to keep the body strong and keep the immune system working against the bad boys. Of course it could be an immune system problem like MS but I feel othewise right now.
George Farmer
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