I MUST BE DYING

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Neurogurl
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Date Joined Dec 2006
Total Posts : 373
   Posted 1/1/2007 6:36 PM (GMT -6)   
Hi Guys...ok so, I have concluded that I must be dying. I have this symptom that the doctor says is rare...called Palinopsia. I have asked about it on this forum and noone seems to have it. I was diagnosed with a PFO but my Primary Care Physician can't say whether or not the PFO is causing the Palinopsia. She said for the patients she has diagnosed with PFO they did not have Palinopsia. I found one website on line about Palinopsia and it said it is sometimes seen in patients with vascular disease, auto immune diseases, brain tumor, migraine and rarely occipital lobe epilepsy. I have had an MRI of the brain 2 times plus a cat scan and all came back normal. It seems to be getting worse. My specialist is the only one that thinks the heart PFO is causing the problem.
 
Palinopsia is when I see trails of lights and afterimages. For example, if I look at a green light, move my eyes up and down I get a long green trail. Or, if I look at something and look away its stuck in my eye. I can't tell if its a processing delay or a type of light sensitivity.
 
The point is, its so scary, especially since I've been hanging around this forum and noone seems to have this. I think I am dying. Has anyone heard of this or experience this or know someone who has?  Please tell me I'm not dying from this.... confused

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 1/1/2007 7:47 PM (GMT -6)   
Neurogurl: I ck'd my Tabor's Med Dictionary & also the Merck Manual. If you have had a negative MRI & CT scan, you do not have a brain tumor or anything that can cause death w/that aspect. That would rule out brain tumor, migraine, and occipital lobe epilepsy. Have you been to an eye MD who specializes indepth into eye disorders?

Sorry I couldn't find anything further. Knowledge is power, so I hope you find more about this disorder soon. Keep a positive attitude and good luck!

Neurogurl
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Date Joined Dec 2006
Total Posts : 373
   Posted 1/1/2007 9:32 PM (GMT -6)   
Hi Pegleg, I have been to a neuroopthamologist who said I have Palinopsia. She reviewed my mri and said normal. She says that sometimes this is caused by vascualar phenomena. Not sure what she means by that but do you know if someone did have something wrong with the brain vascular system how someone gets tested for that. Is that by mri?


IF ANYONE ELSE HAS ANY IDEAS about MY FIRST POST ABOVE PLEASE FEEL FREE TO RESPOND

Mooney123
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Date Joined Jun 2006
Total Posts : 240
   Posted 1/1/2007 11:41 PM (GMT -6)   
You're not dying!!!

I have palinopsia too! :-)

I've had it for nearly 10 years, about 3 years after panic attacks and taking klonopin. I see after images and trails everyday. You are not alone.

Mine has improved somewhat. I have an especially hard time in dim lighting. It's bad just waking up in the morning too. Some of my docs have never even heard of it. I think it's rare.

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/2/2007 9:39 AM (GMT -6)   
Hi Mooney, Im not glad that you have this but I'm glad someone out there has this. You are the first person I know to have this also. Mine started after taking Ativan for anxiety in combination with Lamictal. At first I was misdiagnosed bc they thought I had a seizure disorder and they put me on Lamictal. I was so nervous about the diagnosis that they gave me ativan to calm down. After I was reevaluated they told me stop the meds and when I did the Palinopsia started.

Im thinking its due to prescription meds. Not sure though. And I guess it is rare. So tell me, do you have any health conditions besides the anxiety?

Mooney123
Regular Member


Date Joined Jun 2006
Total Posts : 240
   Posted 1/2/2007 2:30 PM (GMT -6)   
I had acute panic attacks. Ones that kept me up for days and lasted for long periods of time. I felt sick all the time from anxiety. Now i've developed food allergies to almost everything. I have stomach problems, shortness of breath, ulcers on my tongue. I have dry eyes and  mouth. I have low iron stores now. I was born with a hole in my heart that they say is closed now (since a child) but have a new heart murmur. I had an echocardiogam which as negative.  Uhhhh. Doctors say it's just anxiety. I had severe insomnia in the beginning and felt that lots of adrenaline was running through me.
 
Mine started right after klonopin, but I'm not sure if that is completely to blame for this. Mine has improved a bit, it used to scare me. Now i'm very used to it and don't stress over it.
 
Do you have panic disorder? I read somewhere that Klonopin can cause this but also can treat it.
 
I've been to neurologists, thinking i had MS or a brain tumor or something. My lymph nodes are swollen too, i was paranoid of having lymphoma for the last 7 years.   

DREAMGIRL
Veteran Member


Date Joined Jan 2006
Total Posts : 600
   Posted 1/2/2007 3:03 PM (GMT -6)   
:-)  hi you two,  mooney i am so glad you could help neuro, i was gettin worried for her.   Nuero, what was the lamictal given for? hope you are feeling a whole lot better knowing mmoney is going threw it too  whew,  being afraid you are dieing is awful

Mooney123
Regular Member


Date Joined Jun 2006
Total Posts : 240
   Posted 1/2/2007 3:28 PM (GMT -6)   
i'm not sure if i can post this link here, but I found it last night. it's a palinopsia message board. I guess you can cut and paste it in your browser. I can't believe there are others like us that have this. I posted on it for the first time last night.
 
 
i'm normally on healingwell's anxiety board, but my brother in law just had bypass surgery so i posted for him here. that's where i stumbled across your post. this might be the wrong board for palinopsia .LOL  my guess is that it's neurological.
 
I'm sorry mooney, I know this is an old post of your's but I have had to edit out the link to the other message board you posted here.  Even though you dont have a "vested interest" in this other forum it could be viewed as promoting so this is why I have removed it from your post.  I hope you understand.  Thank you ~ Elisha

Post Edited By Moderator (els) : 2/25/2007 4:13:22 PM (GMT-7)


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/2/2007 8:28 PM (GMT -6)   
Hey Mooney, could you describe your Palinopsia for me

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/2/2007 8:30 PM (GMT -6)   
Hey Dreamgirl, the lamictal was given because the first neurologist I saw said I had a seizure disorder. After many opinions, it was said that I didn't have a seizure disorder and to immediately stop the Lamictal

Mooney123
Regular Member


Date Joined Jun 2006
Total Posts : 240
   Posted 1/2/2007 11:11 PM (GMT -6)   
Neurogurl
 
My palinopsia was like this
 
first i had photophobia real bad. it was so bad that even the moon at night and traffic lights were bright. that is part of anxiety.
 
then my vision was very traily. i've had that before and lots of people i know have it too when they are very tired. then mine became constant. it is worse in dim lighting and terrible on black backgrounds (like my old car's interior was all black and it was hell on my eyes)
 
i could see the trail when cars go by or people or anything, like my own hands.
 
i have constant fuzzy vision like i've been staring at a staticy tv for a long time. it's not too intense, but always there. my vision is never clear. it's worse if i stare at the sky in the day.
 
i can also see "heat" or smoke fainty sometimes. usually this is in day light.
 
my trails aren't colored. they are usually light. for instance, if i see a red light, my trail won't be red, but instead, a white trail.
 
the after images were really bad for awhile. if i stared or even looked at an object i could look away and then it would appear very strong (not in color, but in black and white) in an opposite direction. it was so strong that if i had a pencil and paper, i could draw the image because it was so clear. it was there in both eyes. i sometimes felt pressure in my eyes, especially my left.
 
i had also flickering in my vision like a strobe light and big zig zaggy bluish or whitish lines when i went from dark room to a light room.
 
this is daily for me and has been for years. it must be some sort of brain damage???? 

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/3/2007 9:22 AM (GMT -6)   
Mooney...thanks for the description. You sound just like me. The only difference is that my trails could sometimes be colored. For example if I am driving at night and see a red light, I get a red trail. And mine is daily too. Im not sure I believe mine is neurological because I've had an mri of the brain twice and it was normal. One doctor mentioned that this could be vascular. What do you think.

Mooney123
Regular Member


Date Joined Jun 2006
Total Posts : 240
   Posted 1/3/2007 11:29 AM (GMT -6)   
ive had 2 mri's and an EEG, which were negative.
 
i don't think all neurological disorders/diseases show up on thoses tests. i could swear i was having some sort of seizures when i had my EEG. 
 
i think it could also be vascular, but i don't think it's likely????.
 
i don't know if brain damage shows on an mri either. i know i was not breathing enough or correctly for a few years after panic. i think i had slight brain damage. lots of people with panic disorder think they have slight brain damage. sad

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/3/2007 2:13 PM (GMT -6)   
Hmm...thats interesting. Your thinking that is. Maybe it is brain damage, but you'd think some test would pick that up. Thats a scary thought though..and I don't like it! I am so scared Mooney. Honestly though, do you think we are going to die from it?

Pocanut
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/3/2007 4:23 PM (GMT -6)   
Hi

I get this Palinopsia thing all the time. I have had it now for about three or four months but i'm not sure if its getting worse or i'm just looking for it more and more because if i'm distracted i don't seem to notice it so much. I tell you what though it scares the life out of me and i panic so much that i have a brain tumour. I have been to two gp's and they have both said nothing to worry about as i have no other symptoms. Its hard to beleive them when you have to put up with it.

Do any of you wear glasses because i read somewhere that it can be caused by an astigmatism which is why i wear glasses. i hoping that this is the case because the only other explanation is taking drugs and i haven't done that at all. Illegal or legal... Although i did read somewhere else they did a study on 20 people with this and 9 had lesion on brain 2 had vascular conditiona dn 9 were healthy people?? I'm seriously hoping i'm the latter.

Anyway really glad i've found some others with this problem but please don't come back telling me i may be really ill because i'm scared enough as it is.

Take care
X

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/3/2007 5:53 PM (GMT -6)   
Pocanut, I wish it was an astigmatism but I don't think its from that. I never heard of that. Do you remember where you read that. We are all in this boat together and I would never try to scare you.....I'm just as scared as you are!!! Its comforting to know there are people out there just like us. I will tell you this much.... If you have Palinopsia, you should get a full work up. You should get your eyes checked out and your brain etc. Palnopsia can be caused by vascular disease, brain tumor, autoimmune diseases (Lupus) and Multiple Sclerosis (scarring in the brain). It can also be caused by migraine or seizures/epilepsy.

Stay positive because I have had this full work up and no tumor was found. And apparenlty there are people out there like Mooney who has lived with this for years and no tumor etc.

Let me ask you, is yours all day long or only sometimes? We will be ok...I promise. But, please please please get checked out. The least you can do is just rule these things out. Just to be on the safe side. Im not saying you have a tumor...but tumor is known to cause these things. Like I said, tumor was ruled out for me and it really gives you peace to know it. But the hard part now for me is figuring out what the heck is causing these wierd vision things.


Please let me know and keep in touch

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/3/2007 5:55 PM (GMT -6)   
By the way...one other thing....not only was tumor ruled out for me...but all the other things I mentioned.

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 1/4/2007 5:32 PM (GMT -6)   
Hi: MRIs definitely show up brain damage or "dead" areas. I have periventricular leukomalacia (white matter disease). It's thought to be caused by arrythmias & high blood pressure. I have constant MRIs to monitor the progression. I see the films each time and can definitely see changes in the brain matter. If it wasn't my own MRI I was reviewing, it would actually be very interesting.

Evaleigh
New Member


Date Joined Feb 2007
Total Posts : 2
   Posted 2/24/2007 9:11 AM (GMT -6)   

Hello everyone,

     I am new to this site, and I was very shocked to see so many people with the same complaints that I have.  I have had full blown Palinopsia for almost 4 years, and had some symptoms for up to a year before that.  I am extremely sensitive to light, I see streaks of light, after-images of almost everything, "static" on white space, strobe effect in dark rooms, and I even wear a blindfold in the car at night because I can't stand the changes of light.  It took me almost 3 years to even find a name for my condition, up until that time it was waiting ages for tests that showed that I was completely normal.  I suffered in years past from depression and anxiety so the doctors tried to tell me that it was all in my head, even now after my diagnosis my family doctor still wants me to see a shrink to see if that helps *sigh*.  I also have been iron dificient for 4 years and while I have been taking iron pills I still suffer from fatigue, and I have also developed new food allergies recently as well.  I would be interested to know if any of you have found anyone offering a treatment, as of yet I have only been told that condition is unlikely to change and likely permanent.

Evaleigh


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 2/24/2007 11:32 PM (GMT -6)   
Hi Evaleigh.... you have the same symptoms as I do. Could you tell me if your palinopsia is everyday and worse at night? Also, what other symptoms do you have?

Evaleigh
New Member


Date Joined Feb 2007
Total Posts : 2
   Posted 2/25/2007 8:31 AM (GMT -6)   

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

 

 

ms_phd
New Member


Date Joined Apr 2007
Total Posts : 4
   Posted 4/10/2007 8:05 AM (GMT -6)   
Palinopsia is seemingly more common than one might think.

I am a research clinician at a major medical center in New York. We have worked with a number of patients with Palinopsia and are interested in trying to understand better it's phenomenology and cause.

If you experience these symptoms (e.g. persisting after-images), please feel free to contact me at:

I have edited your post due to forum rule and regulation # 5. No posts regarding research studies, surveys or clinical trials without obtaining prior approval from the forum administrator before posting to the forums.  Before posting again please do read the forum rules and regulations. http://www.healingwell.com/community/default.aspx?f=46&m=106997 Thank you ~ Elisha

Post Edited By Moderator (els) : 4/10/2007 9:25:10 AM (GMT-6)


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 4/10/2007 3:24 PM (GMT -6)   
Els why did you erase that :( Palinopsia is so rare and soo scary to deal with. That couldve been my only hope for answers. Its not like I can just go see a doctor and have surgery to fix something that could be life threatening. I need help so bad. Is there anyway you could email me with the contact number that was posted so I can see if they have answers. Are they fake or something is that why it was erased. I mean, if we are here to support eachother then what about people like me with no answers, and no special forum for people with Palinopsia :(

ms_phd
New Member


Date Joined Apr 2007
Total Posts : 4
   Posted 4/10/2007 8:20 PM (GMT -6)   
Neurogurl,

I didn't realize that I had broken a healingwell policy. The comments I received are appropriate - it was an honest error. I'm sorry it caused any problems.

I am a research clinician, however I am not looking to recruit anyone into any study. What I am interested in is understanding palinopsia and the related disorders better. It is in fact not as rare as one would think. I have seen a number of people with the disorder that are otherwise physically and psychiatrically healthy (MRI and all). From what you've written, it seem you too are one of these cases.

Palinopsia can occur in many different ways - Colored after-images, black and white after images, snowy vision, trails, jittered motion...

Some of the more common causes can include medication, previous illicit drug use (even just once), bangs to the head, migraines and cervical pressure. Your MRIs and EEG would likely have ruled out other things such as stroke and seizure.

Many clinicians do not understand palinopsia and therefore find it frustrating. This is because most still believe this is strictly a subjective report - That is, you say you may say see them, but they can't prove it. Palinopsia can in fact be empirically validated (Kinsbourne and Warrington, 1963) - but again most clinicians don't know this and as a result patients are left frustrated and scared. Remember though, palinopsia is sensory phenomenon.

I would suggest:
1) Trying to find a behavioral neurologist in your area.
2) Trying to find a neuoropsychiatrist (not neuropsychologist). A neuropsychiatrist is trained in both neurology (brain structure) and psychiatry (brain function).
3) Getting a second opinion and making sure all your questions are answered. Second opinions are always worthwhile.

Hope this helps (and I hope I din't break any more rules)

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 4/11/2007 1:35 PM (GMT -6)   
Hello,
 
Thank you so much for your reply. This is great information. I have been to many different types of specialists but not a behavioral neurologist or a neuropsychiatrist. I will search for one in my area which is Boston. It is great to see there is research being done on this particular condition (palinopsia). A lot of the sufferers hang around the VS forum at ezboard since there is not one here. Before finding that forum I felt so alone. I thought I was the only one with this trailing thing. Doctors tried me on Lamictal which actually worsened my symptoms.
 
Now I see you mentioned cervical pressure. Could you explain this a little further and how it would cause palinopsia and the other visual disturbances. How would someone get checked for that. I have had 2 mris of my brain which were both normal. Do you think palinopsia could be caused by a heart condition or vascular disease? I originally started at this forum since I also get palpitations and thought maybe its connected with a heart condition. But after having so many tests on my heart it seems that my heart is fine (structurally). I wonder sometimes if a chemical imbalance in the brain would cause changes in the heart (palpitations). This is so complex. And so rare. I am so scared....
 
Could you tell me if this is a life threatening condition?
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