I MUST BE DYING

Thank you Els!!

Neurogurl,

You're in great fortune to be in the Boston area.

How do I find the VS forum you mention?

I can't offer any advice as to the cause of your symptoms as palinopsia seems to have numerous causes, however I would suggest finding a physician you trust and going with their interpretation. Mass General and BID are good places to look for neuropsychiatrists and/or cognitive behavioral neurologists.

Hello Ms_phd

You would go to *******. Then in the search box type visual. The first one that comes up is visual snow/static. Click on that and then go to the discussion. There you will find so many palinopsia and visual snow sufferers.

Hi Neurogurl, I'm sorry but I had to edit out the website you left here as it is linked to another online forum and against healing well's forum rules.  If you would like to share this type of information with members then you can activate your e-mail address in your profile by going to control panel and then going to edit profile and adding it from there.  This way you can e-mail them instead of putting other forums and links like this on the board and risk having it edited off.  You can also sign up to get an e-mail address from healing well if you dont want to use your own address if privacy is an issue here.  If you need any help at all please feel free to message me, my address is under my user name.  Thank you ~ Elisha

Post Edited By Moderator (els) : 4/17/2007 9:09:54 AM (GMT-6)

Hi! Six months ago I developed palinopsia quite suddenly. It started as just an annoying oddity and developed into a constant nuisance. Three months after it began, I became very sensitive to light. Not bright light...but any change in light. I feel what I can only describe as an sudden eye cramp when I'm exposed to a new lighting situation...even a nightlight will do it. A few days after that started, the headache came. It starts over my eyes...best described as a "brain freeze." It moves to my temples by the end of the day, but I think that's just me reacting to the pain by clenching my jaw. I now constantly have all the above...constantly. The only relief comes from either going to a dark room, or sleeping. I've had a negative MRI, EEG, and eye exam. 2 1/2 yrs ago, I had post-partum thyroiditis, which led to a lifelong hypothyroid condition. I'm on Levoxyl, and my thyroid levels are now within the normal range. Last week I had a tooth that had a metal filling resting on a nerve. Hasn't helped.

Anyone have any ideas? I've been to a neurologist, ophthalmologist , and even a sleep study doc. The ophto says my eyes are fine and sent me to the neuro...The neuro tried to refer me back to the ophtho....so now I have an upcoming appointment with a neuro-ophtho.

You are NOT dying. I thought I was, too. I was convinced I had a brain tumor. I have had palinopsia for over 3-5 years now. I started seeing trails and "after images" when I stopped taking Zoloft (SSRI antidepressant). I was on the drug on and off for about 10 years. I was basically a ginny pig. I was so depressed over getting palinopsia I researched the hell out of it...but couldn't find any doctors who knew anything about it. The worst of the palinopsia stopped after about a year BUT I still see "tracers" every day. I try to ignore it and I'm actually getting used to it, believe it or not. If I am tired the palinopsia is worse, or if I'm not feeling well, or if I drink alcohol it is easily induced. It just sucks. I wish we could sue these pharmaceutical companies. My vision is permanently damaged due to their drug, and there's nothing that can be done about it. It is EXCEPTIONALLY rare (palinopsia). Most physicians have not heard about it and there really isn't anything to prescribe for it. I try to tolerate it as best I can. Best wishes to those suffering with it. Any questions feel free to email me at: [email protected].

are any of you still around to keep this post going?

HI Marji,

Thank you for your response. This is very interesting because someone else just recently was telling me about this Hashimotos. I see my neurologist on January 7th so I am going to ask for that test (anti-thyroid antibodies). My thyroid is normal though. Would you be willing to call me?? Or I call you?? I am so desperate!!!  Thank you!!

HI all,
I've just started having these symptoms this year. I have no other pains or conditions that might relate to it. I've had migraines but haven't had one in about half a year. Those have gotten way better but I know it's a hereditary condition as my dad used to always get them around my age and still gets them from time to time. I am not depressed or anxious or anything like that. I suffer from after images lasting for many minutes. Light sensitivity is also something I've seem to acquire this year. I used to be able to look at any bright objects and nothing came of it. Now headlights on cars seem like their highbeams are ALWAYS on at night. However I do get flashes every day which I have been told that could be my retina slightly detaching. These white flashes happen in the eyes individually. So say if I see it in my right eye it wont be in my left. They will all of a sudden happen and it only effects me when I'm looking at something bright. They are usually like the size of a pea. They can happen one in one eye or multiple ones in both eyes. They don't last any more than a couple minutes. I've gone to my GP and two eye doctors who have told me I've got nothing to worry about because I don't have any other symptoms found with brain tumors. They actually all laughed when I mentioned a brain tumor. They said they were occular migraines. They said it just happens to some people and not to be nervous. They seemed adamant about me not having a brain tumor because I really don't have a single characteristic besides my light sensitivity and palinopsia that would relate. But I don't know and am really nervous. It's more the flashes that freak me out because I believe they are brain related and even though I don't get any headaches with them ever, not once, I live with these things every day. They happen on average like 5 times a day. And again they only happen when I look at really bright objects and when I blink rapidly. It's just like if you get flashed by a bright light. If you blink rapidly you can really see whatever it was that got stuck in your vision really well. Except they are tiny pea sized white flashes and only occur in one eye. Both eyes do not see the flash simultaneously. If I have one in my right eye and blink rapidly it will be noticable but fade away within seconds but comes back for a little bit after as I continue to blink against a bright backround. I have had no headache pains or anything. I might get a headache every say 3-6 months but not very often. Also, the vision troubles have only started after my mother passed away this past Feb 3rd 2010. Even though I have taken my fair amount of drugs such as ecstasy, cocaine, speed, and stayed up for days, that was early in my later teen years and when I stopped using those substances (even when using) I never had any eye problems. I was using drugs as such during the years 16-19. I am now 22 and it is just this past year I have started experiencing these symptoms. As it may be a tumor I really don't think it is because I really have no pains or anything in my head and am not depressed or have unusual thoughts. I am not ruling it out in the least but that is not my primary concern after reading about palinopsia and all those that have suffered from it with no discovery of such a cancer. I am thinking about seeying a neurologist and getting an MRI though just to be safe. But I really want to hear about you that have posted years ago and how you are doing now. Since this is my first year I am new to this and want to know if it gets worse, or any better? Or if it is simply the same. I hope reading this post, while having your eyes fixated on this screen, doesn't give you an image that stays for hours now! =) If you respond, I thank you, and hope to get back to you. I'm glad I'm not alone with palinopsia, but if any of you experience white flashes please let me know too! Thanks.

Robdedallas82

Good Morning and welcome to HealingWell.  Thank you so much for posting your information and responding to dstinch.

This is one topic I do not have a lot of information re and I am glad to see you share with all of us.  I am thrilled  to read that you advocate for yourself as that is so important when we continue to have problems even thow our test come back normal.

I hope you stick with us and we are always here to support you.

Kindly,

Kitt

hello everyone, i hope there's still some people on here. I could certainly use the support. I have had palinopsia for over a year now. It began last year after my dr put me on prozac for supposed anxiety. While I was taking it I noticed some vision changes, seemed to be a halo around the television and anything with light looked different. I have never in my life had anxiety problems before, I was put on the medication because I had 2 dizzy spells that they couldn't explain so naturally he went straight to the ssri's. I have been off of the medication since November 2010 and I still have many vision problems. I read other peoples posts and it seems like I have everything that everyone posts all rolled into one. It's becoming difficult to deal with every day and I am getting depressed and have anxiety over this. Of course I feel like I must be dying, there's something wrong with my brain that they can't find. So far they have found nothing, I have had multiple MRI's, CT's you name it and they found nothing. Then I read a few posts that the SSRI's can cause brain damage. Well I didn't have any of this before I started taking the medication, it started after I began taking it and continues to get worse with time even though I am no longer on the pills.
My symptoms include: trails behind just about everything, ghosting like there is a halo around everything i look at but it's only in my peripheral vision, when looking far away it looks as though I'm looking at the top of a gas grill or hot car hood with the wavy looking air above it, after images both positive and negative-when i look at something and look away I can still see the image, it also happens when i close my eyes, as i type this now i have bright white lines in my vision, sometimes it looks like my vision bounces around or like it's out of focus and bounces back into place if that makes sense, one of the most annoying things I deal with is when I'm in my husbands truck he has these silver rings around the vent holes and while i'm looking through the windshield or around in the truck i see those stupid circles everywhere, all over the dash like my brain is just multiplying them and making me see 2 or 3 of them at a time, I also have this unusual flickering in my peripheral vision, not all the time but usually if i start to doze off and wake up it's in the corner of both eyes, this irritating flashing, it also happens after I've done something strenuous.
Once in a while when I wake up in the morning I get very dizzy, if i turn my head at all I feel like I'm going to fall over and it lasts pretty much all day, on top of this I don't want to do anything anymore, I hardly ever leave the house, I have 2 beautiful horses that I love and used to spend every minute with and now I feed them and come back inside and hide. I wish that if nothing else they could diagnose me with something and tell me that I'm not going to go blind or worse over this but test after test comes back with nothing. I have seen a Neurologist I have changed family doctors, my current family doctor swears that there's no way that I'm still experiencing stuff from the medication so of course he is no help. It's very depressing :( I hope that everyone who is suffering from this gets help, it really sucks dealing with this every day, it's so depressing :(

I too found that the only minor relief comes from wearing dark sunglasses, I wear them everywhere all day until I go to bed. I also have the muscle twitches and I still get the body jolts that I got while I was still on prozac.

Evaleigh said...
Neurogurl,

My symptoms are constant and unchanging and have been for almost 4 years. I had some symptoms before that, a kind of grey see-through ripple effect on the sky that my doctor said was just a bit of light sensitivity. But later that year over the course of a month my symptoms rapidly increased, more every day, until one day I couldn't stand it anymore and I had to quit my job (I was a photographer). I am very sensitive to light and wear dark glasses at all times outside (sometimes inside if the lights are very bright). At night I am ok in the city if I have my dark glasses on, but when we get on a country road with no street lights I have to put on a blindfold, I just can't stand the sudden changes of light from oncoming car lights. I have after-images all the time, if from a bright light such as a camera flash they can last up to 5 mins or so, if they are of an ordinary object they only last a few secs. I see streaks of light, and as I said above strobe effect in dark room (sometimes after turning off the light I can see a circle with veins radiating out of it in red outline which I was told was the inside of my eye). Other than the light symptoms I have fatigue, and iron deficiency, the last two years I have had some twitching in my muscles that can't be explained but may be unrelated, and in the last few months I have developed allergies to foods that I used to eat all the time.

Evaleigh

I recently quit taking Effexor XR 150 mg 15 days ago. I have had horrible withdrawl effects. I have this one particular effect that I would like to share with this group because I have been told that it could possibly be palinopsia. When I read up close and then try to look at a distance it is like my focusing pulls on the back of my brain and in behind my eyes and I will get a nasea feeling. My vision is blurry at a distance and not so long ago I had 20/10 vision. I really don't think it is palinopsia as presented in this forum. I wish it would go away, but I really think it is just another horrid withdrawl experience from this demon drug (effexor). I would truly appreaciate your opinion.

Tammy