Can You Hear Your Eyeballs Move?
This may seem like a question for a riddle or utter non-sense, but there are sufferers of an odd syndrome caused by serotonin and a little part of your brain called the nucleus accumbens. In Scientific American Mar. ‘07, there is a story of a neuroscientist that suffered from a horrid grating noise coming from his eyeballs while he tries to fall asleep.
Now before you start reading on, I want you to keep this thought in the back of your head: “Do you perceive the world around you as it really is, or just as your brain wants to interpret it?” Hopefully I have not lost you by now, but keep up as this gets interesting.
The story starts with Douglas Fields, the neuroscientist with “loud” eyeballs. In attending a neuroscience meeting in Atlanta, Georgia, he sat down with a college friend of his to have a couple of beers at a bar. When Douglas noticed Josef Rauschecker of Georgetown University drinking a beer as well, he acquired enough courage to ask him about his really unique problem since he knew Josef was an authority on the auditory cortex. Once Douglas gets his attention and starts describing how his eyeballs start to make a loud, irritating noise as soon as he tries to go to sleep, the guy sitting right next to him says, “Me, too!” Who knows what the actual likelihood of this happening is…but let me go on.
Once the two recover from being dumbfounded over this very strange, unique coincidence, Josef blurts out, “I know what your problem is.” Douglas thinks to himself:
What are the chances of meeting someone else who shares my oddball noise and in front of the only person in the world who could understand it?
Josef goes on to say that their problem is serotonin. “Serotonin is a neurotransmitter that stimulates neurons in the nucleus accumbens (NA) to activate it.” The nucleus accumbens or NA is basically an input regulation device. It allows a certain amount of sensory input into the conscious mind depending on what “we” are doing at that time. When one is deeply focused on a specific task, the NA will block out or heavily regulate unwanted noise or other sensory input. A good example is the selective hearing that men are so good at while watching a football game. His NA is blocking out the talking of his wife, so that he can continue watching his football game uninterrupted.
What does this mean for good old Douglas and his friend? Well, when Douglas was younger he injured his inner ear, and when his nerve fibers sprouted to repair the damage some of them “miss-wired” and ended up cross-wiring to his circuits that are responsible for vision and balance. So, some of the sensory input from his eyes that should go to his visual cortex ended up going to his auditory cortex causing him to hear his eyes move. How does that sound [Pun intended]?
Serotonin comes into play to control what the NA lets through when one tries to “fall” asleep. So when Douglas starts to enter into his twilight sleep, his NA falls asleep as well, allowing him to hear his eyeballs move. The same action occurs when he wakes up. Fortunately, all Douglas has to do is adjust his serotonin and he should never hear his eyeballs again.
After I originally read this story, I couldn’t stop thinking about how this proves that our reality is nothing but electrical inputs, and how we trust our brains to interpret them correctly. It is our brain that will decide what is essential and what is not. But, what if our brain does not interpret them in the way that represents what is really “out there”. What does that do to our sense of “reality”. So, is the world around you really like what you think it is, or is your brain wrong? I guess we will never know. But what can be learned from the above incredible story, is what you think you perceive may not be “really” reality.
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I was about to comment on your capital punishment post (a simple “amen” will do for now), and then I scrolled down to this one. Yes, I too hear my eyeballs move in my head. No one knows why, after countless tests over the past 10 years. One doctor had the good sense to put me on an anti-depressant, and that did the trick. If I miss a dose, the sound returns within hours. I’ve only met one other person with this disorder, but her experience was temporary, unlike mine. It’s maddening. But there are so many other things toying with my perception of reality that I do try to ignore this one.
Love your blog, by the way. I’m a regular reader.
I can tell when I’ve missed a day taking my SSRI anti-depressant when I can hear my eyes moving. I’d really like to find out more about this and what causes it. This didn’t happen until after I had been on SSRI’s for a while. I also suffer from tinnitis… a neverending ringing in my ears. Talk about unwanted noise! Now if I could get my nucleus accumbens to filter out the ringing in my ears I’ll be all set. I’m thinking that there may be something to that idea. Wondering if anybody knows anybody doing that kind of research. I’d love to be a guinea pig in such a study!
Marcia Ford — I am glad that the doctor figured anti-depressants may work, although probably for the wrong reasons. I could only imagine what it would be like to constantly hear your eyeballs move.
And thanks for being a loyal reader, I am sorry for not replying to this comment earlier. I must have missed it due to a thousand things going on at once. But, no excusses, I am sorry.
Wes W — As far as anyone doing research, all I know is the guy that I mentioned in the article named Josef Rauschecker. He is the “man” when it comes to these kind of conditions. If you want more information I recommend you pick up the latest Scientific American.
If you want to know what I think. Many times when you take drugs that simulate production or actions within the body, your body will find a homeostasis with that drugs presence. To do this, most of the time your body will compensate by decreasing or increasing other processes in the body. It is called the cascading effect.
Bottom line, when you take certain drugs to correct one thing, other things can go wrong. In your case (I believe) when you started taking the SSRIs, your neurons — so that your body finds its homeostasis — may have increased its own ability to re-uptake the serotonin back into the pre-synaptic neuron causing a depletion of serotonin within the synaptic cleft.
What will happen in this case is when you forget to take your SSRIs, your serotonin levels will be lower (actually shorter) in the synaptic cleft then before you started taking the SSRIs. Causing symptoms like hearing your eyeballs when you forget to take your SSRIs since serotonin is respsonsible for controlling your nucleus accumbens, and the amount of ambient noise that gets through to your consciousness.
I hope that made sense, it was harder to explain than originally thought. Then again I am no neuroscientist. Take care and hope to see you agian!
I, too, have a similar symptom but mine can come at any time of the day. I associate that sound with the one you hear when you get your ‘bell rung’–when you smack your head you hear a sound. Same sound when I move my eyes. Most usually occurs when I’m fatigued or for a week after a migraine.
You guys just saved my mental state. I started taking the dang antidepressants just to feel better and that I did, but I haven’t felt like I needed them and haven’t bothered to refill my subscription. Four days now of not only hearing the loud swishing in my ears when I move my eyes, but it feels like my heart skips a beat, and I can feel it shoot down my fingers to the tips. Can you say, “getting a refill as soon as I get up in the morning”!!!!!? I too describe it as the sound you hear when you get punched in the nose or hit your head. The only thing is that you shouldn’t have to hear it thousands of times a day.
Some additional symptoms. I get the rush feeling into my hands and legs too. Something else that bothers me…if I move my eyes into a certain position I can ‘capture’ (for lack of a better term) a position where the sounds is sustained. But it’s creepy. If I do so, I find that I am ‘paralyzed’ sometimes is described as sleep fugue. I cannot move anything except my eyes…I can see the clock and watch the sun rise, but can’t move a thing. I am completely alert and aware.
To break the state I have to concentrate on moving my little finger. Once I get a tiny active movement I can then move. I am very stiff and sore following the event.
It’s rare and I intentionally avoid this—but I can activate it whenever I’d chose.
Anyone else??
Larry and Will - Wow, when I originally wrote this article, I had no idea that there would be so many that would enjoy and relate to this article. I am glad that I could give you guys a platform for speaking you mind about your condition. Take care guys.
You mentioned a ‘current’ Scientific American–which issue? I get em all and I don’t recall reading about this. Sure would have cuaght my attention.
Now–what to name it. Occular kinetic aural stimulation with or without peripheral somatosensory sensations.
OR….
Aural Neural Occular Initiated Sensory Excitation
A. N.O.I.S.E. (an infernal one at that)
Larry
Larry - It was the March ‘07 issue of Scientific American. Here is the teaser for the magazine’s article on its official website. It was called The Case of the Loud Eyeballs.
Click Here for Teaser!
As far as the name, you seem to have a real sense of what to call it. I liked the latter one the best! Take care Larry.
Just wanted to set down and fill everyone in on how things went after refilling my Celexa prescription. After taking the prescribed 20 mg pill, I began to periodically take note of the severity of the shocking pings of white noise in my ears, and nerve impulses down to my fingertips as I would move my eyes. A slow digression of the symptoms began after about an hour, and by the third hour they were gone 100% and have stayed that way. This article saved me from a five day hell that could have lasted who knows how long. I could see a person trying to drink their way out of a condition like this if it were to go on permanently. I can’t thank you enough for posting this where I could find it.
My mother is a DO (Osteopath), whom I’ve been driving nuts about my ear noises caused by my eyes. After printing the article and blogs for her to read, she has confirmed that it all make perfect sense, but that most doctors would have no clue what to do for a patient up to this point as far as she knew. She knows now and will look out for things that sound like they could be a “Loud Looker” :O) LOL.
A think occurred to me today after the enlightenment. Back when I was a kid there were people reportedly who could hear colors that they could see. I and others thought it was a way for people to get attention or fame and laughed off. If nerve impulses generated by the movement of the eyes through unnaturally rewired nerve pathways, couldn’t it also be possible for the brain to interpret sound impulses from the ears as ocular impulses from the eyes, and produce visual perceptions that actually originated from the auditory system? Please chew on this and give me your opinion.
Wow, good question. Let me ponder that one for a while. Thanks for all the information Will. I am glad that we could help you. Hopefully your story will inspire others as well.
After going over my last post, it looks as if I were thinking faster than typing. To have a more coherent version of my question, here goes again.
If nerve impulses generated by the movement of the eyes through unnaturally rewired nerve pathways can be interpreted as sound, couldn’t it also be possible for the brain to interpret actual sound impulses from the ears as visual perceptions? Auditory input interpreted as ocular, rather than our ocular input interpreted as auditory as we have been experiencing.
Synesthesia
http://en.wikipedia.org/wiki/Synesthesia
And the trusty Sciam–a very good read for the loud lookers…(PDF format)
http://www.sciencecore.columbia.edu/demo/web/resources/readings/hearing.pdf
I don’t think hearing eyeballs move is the same thing as synesthesia, interesting as that is.
I’m not hearing what I see, I’m either hearing muscle movements or signals that are meant to trigger muscle movement. It’s eye movement, not what I’m looking at that evokes the sound. By the way, I can get a very similar sound by clenching and releasing my jaws regardless of whether I’ve taken my SSRIs or not.
– Wes
I strayed with the Synesthesia post. That was in reply to hearing colors or seeing numbers/letters as color. It’s in line with the neuron cross over noted with the loud eye balls.
The jaw clench is a good description of the sound—only 10 times louder.
This started happening to me when I was taking Effexor XR. If I missed a dose I started getting ‘dizzy’ when my eyeballs would move, and it was like I could ‘hear’ it. So, I tapered off the medication…. only it still happens. I guess I’m just lucky and stuck with it thanks to that Godforsaken medication. I had infinite problems with that med, seriously don’t anyone consider taking it, the withdrawals are murder! And obviously it has done some sort of permanent damage to me. And interestingly enough, my sounds dont sound like a grating noise, they sound much more like a ‘woosh’ noise.
I also have had numerous eardrum ruptures, I wonder if that could have contributed. All i know is that this particular symptom (and some other terrible ones) started when I’d be late taking the evil effexor, and it was worse during withdrawal and has only gotten mildly better since! ugh.
Oh, and to answer someone’s previous question about whether or not they feel it going thru their whole bodies…. yes, I do. It is actually rather debilitating for me, and all seemingly a result of the effexor. It starts when I move my eyes, then seems to flow thru my whole body. Look up effexor withdrawal and ‘brain zaps’ it’s some sort of an electrical malfuction, and its actually a common occurance during (and apparently after) effexor withdrawal.
The Effexor issue fits well with the decreased neuro-chemicals “Serotonin is a neurotransmitter that stimulates neurons in the nucleus accumbens (NA) to activate it.” as described in the original article.
Lar
Hi Sola~
You have exactly what I have to a “T”! Celexa has no ill effect on me and 100% stops all the problems with the “woosh-woosh” that about made me want to jump out my basement window. :O) Celexa also has made me in be in a good mood all the time like when I was a kid, so I would say you are about 20mg and three hours away from a pleasant day and relief of the “woosh-woosh” of a “Loud Looker”.
Will
Will,
you dont understand… I know that… in fact, celexa is the only reason i survived the effexor withdrawals! But I really, seriously, dont want to be dependent on an anti-depressant my entire life, do you? Do you really see yourself taking celexa for your entire life time? They arent supposed to be taken that long anyhow! Are you going to just keep switching from med to med? I dont want to live like that, and i feel that the more time i put off this ‘withdrawal’ or whatever it is that i still have…. the more its controlling my future. If I take celexa now, then when i decide to stop taking it later ill still have the issue. I’d rather ‘put my time in’ now and hope that it will go away in the future…. or at the very least get used to this problem that i now have if im not taking any antidepressants (which, has only been a problem since the effexor!)…. and for the most part, i have gotten used to it. It’s a nuissance, yes… but ill live. And I’d rather live drug free… and hope for the best future possible.
Sola~
The bad news is that before I ever took an anti-depressant, I had this problem off and on anyway. It looks like the ear drum damage you suffered and my ear damage from military explosives were the cause of the miswiring that started it. Just staying off the Celexa is not going to make it good again in my opinion. I do believe that taking it made it worse when I stopped. You may be able to function with it, but I find myself affected in a way that keeps me from being able to work and concentrate on anything. I am going to try to reduce the dosage way down to find the point where it still works, yet minimizes the amount I take.
Oh my gosh i am so glad i found this site!
About 3 weeks ago we had a bad virus or strep or something go through the family where we were all felt like crap for about 10 days, weird symptoms all over. For several days my stomach was so queezy I couldn’t bear the thought of taking any pills. So I fell off the wagon taking my blood pressure med. I also took the occasion to drop Celexa from my life. I’ve been doing a lot better emotionally and I figured what the heck since I;m feeling lousy physically that will take my mind off going cold turkey.
In past week I got back into b.p. pills, but still no more celexa. But the weirdest business about moving my eyes back and forth. I get a sort of vertiginous feeling and a shooting sensation down my spine. It also makes my tinnitus ring a bit louder at that instant. My dad died at age 39 from brain aneurysm, i’m 43, so I’ve been imagining all kinds of terrible scenarios. there’s something growing in my eye socket, my optic nerve’s falling apart, i dont know what. Wife said it was fluid in my ear… I can shake my head like crazy, no dizziness. Just moving eyes L-R, up-down does it. I knew telling the doctor this would make him think I’m nuts. I don’t even know how to explain the sensation exactly. Yet some of the folks above have hit the nail on the head. Of course, it’s seratonin and neurological chemicals! I’m not imagining it per se, nor am i falling apart physically.
Interesting experiments I’ve done… If i am in pitch black darkness, i can roll my eyes like a bolling alley, no problem. It’s something about rapidly changing visual field on retina and nerves scrambling to interpret same, not gross movement of eye muscles. It’s fun getting insight into how the old noggin works, even though it wigs me out viscerally and down to fingers like others say while its firing.
Holy smokes, thanks for the amazing story Mike. I can’t believe how many people are afflicted with such a seemingly rare condition. I am just so glad that this article can help so many people.
The darkness test that you talk about was very interesting. That helps narrow down the actually nerve paths that cause the condition. Very, very interesting.
Anyways, I am glad that you found us, and I hope that this helps you with your eyes. Take care Mike and hope to see you again.
I took note of the darkness affecting the symptoms. I do notice the the effect seems less ‘loud’ with my eyes closed but it is far from absent. In fact, it is more annoying since I have no ‘visuals’ to divert my attention. It is most annoying when I am exhausted and trying to go to sleep. Like right now….
Stopping the Prozac sure has exacerbated this.
I did this experiment myself, but there was no difference in my symptoms in the dark. I have to go off memory now that I am staying with the Celexa. I hope never to put up with it again.
I do have a question though. When I hear water run or type loudly my tinnitus will spike in volume with each key stroke. Also, when talking on a loud phone the sound will sometimes cause the opposite ear to thump like dripping water; running water will sometimes also cause this. Anyone have that nutty condition?
Ok, I did the experiment, and my experience is that I don’t think there is much difference in the “whoosh” sound between eyes closed vs. eyes open. It is a slightly different sensation though as my brain sort of wants to link the blurring vission with the sound when my eyes are open, and it eoesn’t/can’t do that with my eyes closed.
Maybe Mike’s eyes-open-only experience has something to do with the muscles used to focus more than those used to move eyes. Or maybe this is just normal symptom variation between us.
Mike, are you planning to continue cessation of Celexa? I’d like to know how long it would take for this symptom to go away. I.E. How long will it take previous (normal/abnormal?) brain function to recover.
Since this all seems to cause the brain to adjust, I’m wondering if it would be possible to do the exact opposite of SSRI and train the brain to compensate for lack of serotonin rather than excess. Could be dangerous though if it exacerbated depression symptoms during the “training” period. Still an interesting thought.
Brains are weird and awesome critters, eh?
– Wes
I tried submitting a reply and didn’t see it come through. Hope this isn’t going to be a duplicate! Anyhow, I, too started hearing my eyeballs swoosh when I started taking effexor. The noise returned whenever I skipped a dose–especially 2 doses. When I quit (cold turkey–NOT wise), the effects were very pronounced for a little over a week. It began mildly, but over several days the swishing noise got more “electrified”–it became more of a buzz or zap, and the sensation filled my head, causing brief dizziness, and travelled down my arms. Felt almost like a tiny seizure. Had no other experience with it until last night. I am treating an illness that consists of sinus congestion, cough, gagging triggered by cough, headache, and fatigue. Dr. switched me from lisinopril to something else for blood pressure (because lisinopril sometimes causes a cough), gave me an albuterol inhaler, a cough syrup, a decongestant, and two Z-packs to fight infection. Last used inhaler and cough syrup on Friday night. Last night–even though I no longer take any antidepressants (recently tried another), and haven’t for more than a month–I felt my eyeballs zap again. It was in the dark, and I noticed that there were also flashes of light that accompanied the brain zap. It’s not happening today. However, another frequent symptom is hitting me big-time: loud noises make me feel dizzy, just like the brain zaps. I just read an interesting article on this (superior semicircular canal dehiscence syndrome), and I wonder if there is any connection. Maybe the labrynth is another source of weird cross-sensory effects.
Ok, this is interesting. I am taking three antidepressants; Cybalta, Lamictal and Welbutrin. I am really tired of the affects of these medication. Especially the weight gain. Getting to the “swishing sound” from my eyeballs moving. My swishing sound can be compared to a Kung Fu movie. The sound is none stop and really affects my work, not to mention my life. Even on these three pills the sound is there but not as pronounced. Recently I decided that it was time to get off these drugs. I am tired of them. Cymbalta was the first drug of choice to stop taking. I figured the other two drugs would compensate for any withdrawls. I have not had withdrawls from going off Cymbalta, but my “swishing sound” has really become louder and more pronounced. The only way I can control the swishing is by being in a loud environment. Makes sense since it’s loud and drowns out the swishing.
My question is, if these drugs alter the serotonin level of the brain, would three antidepressants cause the serotonin level to flucuate up and down (who knows how much) due to the strength of each drug?
I want off all this stuff. I have gained 40 lbs. since taking these drugs. Talk about making you even more depressed. What to do?
Good luck to all.
Mike
Sometimes, when I move my eyes, it is like a science fiction movie. It is like my eyes move and focus but I have a whup, whup, whup noise. It is accompanied by dizziness and pressure in my ears. It is sort of like when a train stops and the cars hit in succession. If I am having an attack, it happens in the dark also. Taking antivert has helped somewhat. Sounds also grow louder in my ears when I clamp my jaws and when I chew. I am on Effexor XR also, but I had this before. I have told all my doctors and only my opthamologist had heard of it. He said he thought it had something to do with the limbic system. One of my sisters has this also. Both of my sisters and I have a terrible time sleeping. I have almost no REM sleep.
Been a while since I’ve posted on here, but wanted to let anyone having problems know I’ve concurred my crazy eyes. Since starting on the Celexa over a year ago the sound I hear and the electric shock that shoots down to my finger tips only reappears if I forget to take my 20 mg pill for a day or two. I am thinking of only taking 10 mg and see if that works as well. Celexa has truly been a life saver.
Yes, I, too, hear my eyes “swoosh” when I miss a dose of Effexor. If I don’t take it soon, my symptoms worsen and I feel dizzy/vertigo with eye movements. Sometimes, taking steps on a flat floor will cause that flash/missed a step/surprised feeling. These are a nice reminder to take my medication. However, yes, everyone I’ve told this to thinks I’m crazy.
No, I would not stop taking medication because of this. Effexor has saved my life as I have treatment-resistant depression. I have no problem with being “dependent” on medications as it allows me to be a functional person.
Advice to anyone quitting medications: consult your doctor first. Some withdrawels are uncomfortable but others are dangerous.
Thank you for this article. I am relieved to find others with the same thing.
If anyone thinks you’re nuts, just let them read the rest of our comments here and they will soon realize that it’s they who are nuts. It’s only us who knows this weird condition in first person. Thank GOD we have a solution to it we can depend on. I was never really depressed all that bad, but my “Crazy Eyes” went away and that’s all I care about. I’ve got to tell you, I felt like a silly kid when I started taking the 20mg dose. Was a little too undepressed, but am cool now. I wish I could actually meet another person with this, but it’s not so bad having a rare disorder when you know how to address it.
I see that there have been some more entries since I last wrote. I just wanted to report that I have no more symptoms. I stayed off the antidepressants, and I tapered off the benicar that the doctor switched me to from the lisinopril, as the cough caused by the blood pressure medication wouldn’t go away. My blood pressure stayed good for a long, long time, and my depression remains in abeyance, both thanks to meditation and the use of Inner Bonding Therapy to understand my anger and anxiety. Recently my BP went up again and I started the benicar again. I am getting the cough back, but I do not have any more of the whooshing and zapping eyes. It seems to have been solely the effexor in my case.
Interesting posts.
I can also hear my eyeball move - actually my left one only and only when I’m tired or don’t feel well, often accompanied by a slight headache.
I don’t think it’s got anything to do with nerve stimulation. It really sounds like the physical process of the eyeball rubbing inside the eye-socket. Wel,, in any case, I got a friend who’s a researcher in MR-imaging and I’ll ask him for a free scan….
Chers
I have the load eyeballs as well. I hear a wooshing sound when my eyes move. Its loud. I did notice, that if I am taking effexor, it goes away. Had to stop effexor since it was giving me migrain headaches and night sweats.
I did have ear damage as a kid. my ears ring all the time. Had toobs in my ears from infections as well as loud noises from bands and guns.
Oh, additionally, I had a sleep study done, and one of the results was I didn’t get any rem(rapid eye movement) sleep. I’m not sure, but I think that rem sleep is required. thats the dream sleep.
It also showed that I move my legs around alot at night, but im not sure that is related.
I also have anxiety issues and have taken ssri’s on and off for years.
The previous comment is mine
Hallejah!!, when I say to people that I get a fizzing noise when I move my eyes they look at me like Im mad! I havent been taking my seroxat 20mg for a week . I had no idea about the connection with serotonin as I have not an one of these *episodes* for at least 2 years. This all originally started when I had a virus about 20 years that affected my balance.
Thanks for the article it’s such a relief to know Im not alone with this!
So glad I finally got the nerve to look this up!
For the past couple of months, whenever I wake up I can keep my eyes closed and look right and left, and hear what sounds like something from a Matrix movie…like an electric, squeaking whoosh. This is the only time I hear it, and figured it was something like a waking dream. Or that I was losing my mind, probably literally to a tumor wrapped around a cranial nerve or something.
Yes, I’m on Paxil, and yes I’ve missed some doses before, but never connected the two. You can bet I’ll be paying attention to that now. BTW, I’m a poster child for Paxil…have been on it for about 5 years now and my life is better than it has ever been!
Wow! Now things are making sense. I stopped taking anti depressant 3 weeks ago when I ran out of supply. Taking anti depressant has a bit of a stigma (at least in my mind) so I was happy to not replenish when I realised that I cope pretty well without them. In the last week the swish noise started when I move my eyes quickly. It is like a TV channel getting interference or “snow” for a second. Now I can live with it!
I have been off of cymbalta for about a month now. Feel Ok, except for the eye wooshing. Does it ever stop? Anyone been off longer??? Just curious. I only took the cymbalta temporarily to deal with some anxiety. Thought i was going crazy when i started hearing my eyes move. Thanks to you folks I found something right away with my 2am google, but seriously thought something was horribly wrong. yeah internet!
Thank you for saving me from the funny farm. I also have the problems larry described and was on anti depressants for a long time. I am up once again due to the ringing in my ear and anxiety. I think this will help me sleep again and seriously, I did not have this before my meds. Class action suit anyone? This is nuts! I really thought I was going crazy so I rarely mention it. lol Besides, I could not describe the ringing buzz sound i hear when my eyes move. I would hate to take my meds just because it stops when it is because of them that it started. hum… email me or catch me on my blog because I plan to open up there on the subject too. Instead of my doctor, maybe I should call my lawyer. I am ticked! Pharmaceuticals, I have such a love-hate relationship with them!
crystal, same here, also I took cymbalta. wow. I am sorry you guys are suffering too, but I am so glad not to be alone and misunderstood.
Hi Crystal. I am in the process of changing from Cymbalta to Lexapro. The swooshing sound came only when missed a dose of Cymbalta. It is going away. Just wanted to let you know that it is tough to hear it day in and day out. Maybe a change to different medication will help you.
Good luck to you.
Mike
Ok. A Little Study Here….
Obviously we have established that a common link between us is our predisposition to depression of some sort or another. I have been told I was depressed for years and tried many meds. Now, after my latest MAOI/SSRI dosing, I am clean of my own choosing. Reading this article explained a little the swooshing noise in my ears when I move my eyes. But what if there are other things we share? Here are some of the things I have noticed about me….see anything that you can relate to? Let me know!
Antidepressants don’t change my depressing behaviors. They simply make me more complacent about them and less guilty about not wanting to do “normal” activities.
I have periods where I will lay down and it is almost like my body falls asleep but my mind doesn’t. I would almost describe it as a seisure state in that I know I am trying to move or wake up, but am unable to do so. My heart races and often I am on the verge of panic when I can finally break free and move.
Not only do my eyes swoosh, but when I am reading they sporadically dart off to one side or the other uncontrollably. Often if I move them a lot, I get dizzy.
I have had unexplained deminished hearing in one ear since teen years.
I get motion sickness severely. Even from just spinning around on a swivel chair once. As a child I used to love to spin and did so often!
I often can’t sleep unless drugged or otherwise intoxicated. Which is more detrimental…the lack of sleep or the unhealthy lifestyle?
I am an extremely hard worker, but find it difficult to get my heart into things for my own enjoyment. Usually I do things for other peoples praise not my own.
I know when I need to increase my doseage of antidepressants by sudden almost uncontrollable and very uncharacteristic bursts of anger.
I am rather uncomfortable around other people, but hate being alone with me and my mind:)
Anyone else? Love all your posts above! So informative!
Hey Dominic, thank you for sharing your personal story. Welcome to the family! I hope you all find some type of salvation for your concerns within the information that you all hold within. Good luck.
[Cerebrl]
OK, I am glad to hear that I am not crazy hearing my swooshes! I am 2 weeks cold turkey Effexor and the noises are getting worse! I thought they would get better but not yet! Will they or should I just take the meds again? It is really effecting my normal life!! What to do??!!
Like so many before me, I am so glad that I found out someone else who can describe exactly what I have and tell me why I have it. I figured I couldn’t be the only one, but would never have linked the noise to my SSRI before. Oddly enough, a friend pointed me in the direction of this blog from my own when I commented that I can hear my eyeballs move. We all seem to have similar if slightly different versions of the same thing. I, personally, am in the “swooshing” side of the family.
I have had this once before, however, when I severely and abruptly changed my diet, but it only lasted for a few days then and at the time I was still on my medication. This time, I ran out of my Paxil and found that unlike times before when I missed a day, I am not feeling “wrong” again. I use the term only for the lack of a better one; depression, anxiety, etc … any and all of the above. I don’t mind the idea of being on medication for the rest of my life if that’s what it takes to feel normal, but when you forget it one day and feel a tremendous drop in mood, it’s not fun. I would rather *not* have to remember them, so when I forgot to take them one day and ran out soon after and keep forgetting to stop by the store where my refill is waiting and still I’m ok … I think it’s time to experiment for myself and see if I can live without them. If not, well, I’ll have them here to take up again.
I don’t have any extension to the rest of the body. My head does feel a little…off. Not dizzy, but like just my head is on the deck of ship.
When this happened before with the diet change, it lasted for three days (if I remember correctly) and then went away. I am feeling better already, but not sure if it’s because I’m just getting used it or it really is getting better. I don’t think my head is spinning when I move my eyes as much as it was this morning. Then again, it could be that I have an answer to why!
*******
Dominic,
I like the thought of seeing if there is anything else in common, so I’ll join in on your little study:
/Antidepressants don’t change my depressing behaviors./
I am not sure if my meds change my behavior, just my mood and my ability to get over a negative mood instead of clinging to it for the rest of the day or longer. I suppose that makes me behave differently as I react differently to situations. I am not so worried about what “everyone else” thinks about me anymore and never realized before the medication that I was putting so much thought into this. I was feeling guilty about a lot of things, but after a good therapist got hold of me I found that issue and dealt with it. I am who I am and so be it. I like me, now. I don’t think that was the meds that caused this, but evened out the field of my emotions (so to speak) so that I could see more clearly things that needed changing and changed them. Well, that’s my theory at least, and I still have things that need fixing. I’m far from done, but… I’m sorry; I think I seriously got off topic there. Moving on…
/my body falls asleep but my mind doesn’t/
Nope. I find I sleep easily and completely. I find my problem would be sleeping too much. When there is nothing that I want to do … I find I want to sleep.
Hmm… no other ear problems that I know of … no motion sickness unless I try reading in a moving vehicle and even then it’s minor… sudden bursts of anger, I blame on my sister (I would explain, but …trying to keep on topic this time).
/can’t sleep unless drugged or otherwise intoxicated/
Again, sleep comes just fine for me. I try to avoid becoming dependent on anything as I come from a family of addicts on one side. Right now, caffeine is my only addiction as I get severe headaches for several days if I cut it out, which I have in the past, but I’m back on it again.
/uncomfortable around other people/
Well, yes, I am uncomfortable around large groups of people or people who are not like me (don’t know a better way to put that). There are not many people that I can say I’m truly 100% comfortable around, but since the diminished worry about everyone else’s opinion of me, I can deal with it far better than before. Still, I do not seek it out. I never thought this was not “normal” since my family and those few close friends are pretty much all like this. I am, however, quite comfortable alone as long as I have a good book to escape into or something to keep me from complete boredom.
I always put these things in with what ever the issue is that I’m on the meds for in the first place.
Someone mentioned migraines, too, and I have migraines on occasion, but not severe pain. I have strange eye sparkles and I’m told that this is type of migraine as well or a pre-warning to one, though I don’t always have pain afterward. No clue if there is any link.
(that’s a long post … sorry about that … hello to all! Thanks for the information!)
Very thankful to have just read all 48 comments. My symptoms were described most closely by Will, but many details from others caught my eye. I too only get the sensation when I move my left eye. The sound happens whether my eyes go left and right while open or closed and I can make the crunching woosh sound happen by squeeziing my eyes tight. Usually it is a two beat noise, but with additional eye movement it can be more. I get vertigo, and sometimes I become uncoordinated and feel I might pass out. I get the sound in both ears, mostly my left where I had a perforated ear drum form a virus in my 30s. I am experiencing my fourth round of these symptoms which have lasted from 6 weeks to 5 months. The current problems I have had for the last few days could have been triggered by me switching to Celexa from Remeron, I ran out, of the month’s trial of Celexa, and was too lazy to get back to my Doctor, so after a few days with nothing went back on my old Remeron. Certainly the serotonin issue could have been the trigger. I will be very conscious of my serotonin levels from now on. Thanks to everyone for taking the time to add their thoughts.
OTHER HEALTH ISSUES AND SYMPTOMS: Since a very bad dose of Epstein-Barre syndrome nine years ago, I have been diagnosed with the persistant pneumonia bacteria CPn. This is implicated in many different syndromes including Chronic Fatigue, and connective-tissue disease (including lupus and MS). These diseases are being tested by my GPN as possible causes of my great muscle fatigue, chronic pain, crippling sweating, brain fog, short term memory loss and intolerance to any exercise. I too have had the symptom where your mind is active, but your body just doesn’t move without unusual effort. I am about to do my second sleep lab, as they want to rule out narcolepsy. I have migraines in “bunches” from time to time.
audhumla
Your “Other health issues’ are strikingly familiar. Epstein Barr/Mono bad enough to put me in the hospital for 3 days with fever of 106 (yeah 106) Taht was 20 years ago.
Recently worked up for MS, Muscular Dystrophy, cerebral atrophy, etc. Muscle fatigue and exercise intolerance and short term memory problems come and go. More ‘come’ than ‘go’. The migraines have become worse but less frequent.
BTW I haven’t taken SSRI’s for over a year. I never drew a coorelation with SSRI’s since I’ve had the noise eyes all my life.
Larry
How very interesting….I have taken antidepresants before and gone off of them without noticing any problems. I have a symptom that I havent read here. I explain it as I can feel loud noises. Not in a sense that the noise makes me jump, but it can make what feels like my nerve endings jump. I have had an upper resp infection this week that has lead to bronchitis. I also talked with my doc about changing my antidepresant because of weight gain with the effexor. He had me go off of it for the past 3 days then start cymbalta today. I have had this awful feeling in my head since I went off of it. Feeling, hearing my eyes move, a swishing sound. I have had this in the past that would come and go, but nothing like this week. I was afraid to tell the doc for fear he would think I was really crazy. (Which I AM NOT) LOL Its interesting what we all have in common. I too think that I need to be checked for lupus because of other symptoms.
I am also a smoker, and I havent smoked all week because of being sick, so I am withdrawing from that as well…..It can only get better, right?
I forgot to mention one other thing that I have suffered for a very long time and wondered if some of the rest of you experience it as well…..A feeling of pressure change in your ears when getting up from a sitting position….or lying on the floor and then getting up?
Sheri–you say you have “suffered for a very long time” with this symptom. Does it actually cause suffering???
Ok….perhaps wrong choice of words. Experienced may have been better. However, it isnt a very pleasant feeling as it sometimes feels as though I could pass out but I dont.
Yes to the pressure change feeling. I will get up and walk down the hall and notice that my ears will pressurize to the point I can’t hear very well, then after a while it will go away. It can also make me feel a little dizzy. I never would have thought this was related to the bug zapper eyes, but who knows at this point.
Sheri
Sounds more like a blood pressure issue ‘Orthostatic Hypotension’
Which means when you stand quickly the blood flow to your head (pressure) doesn’t rise fast enough to get blood to your brain so you get a ‘fat’ head, full ears and the feeling of passing out. You heart rate goes up I’ll bet. The trick is to prepare: Move your lower legs about and tighten the muscles in your legs before standing. You can also briefly blow against close lips, like blowing up a balloon, to increase the flow to your head.
BTW–This is the vascular disease that accompanies smoking and age. Ya have stiff peripheral vessels that don’t respond to changes in body position. Normally they would contract in the lower legs to supply blood to the upper parts.
This in reply to everyone and especially Dominic. I have had the “swishies” as i like to call them since first going off of Paxil in the late 90’s. Unfortunately, i know I have to be on meds for depression on and off for the rest of my life. Most recently i have tried Cymbalta and gained almost 10 lbs, lost sex drive and felt like it just made me want to sleep all the time. So i stopped taking it after tapering off about a week ago. The swishies are brutal and do almost always occur when moving my eyes from side to side. I am having terrible bouts of crying constantly that alternate with terrible anger and impatience. I feel as if I’m greiving a death or something, that’s how awful the withdrawal is. I would not get on this drug if given the option. Prozac always worked for me and since it has such a long half life it leaves your body very slowly and doesn’t cause the eyes swishy sounds. I would recommend a 10mg dose of fluoxetine (prozac) to help curb the horrible withdrawal symptoms. Unfortunately, since Prozac was my drug of choice for the past 15 years, i have become immune to it and the brain swishes started happening to me while i was on it! I know that meant it was not working to increase my serotonin anymore. This is why my Dr. told me to try Cymbalta.
Please forgive my rambling but i love that I found these blogs. All of the Dr’s i’ve talked to about this withdrawal effect of hearing my eyes move say they have never heard of it before. It is truly a hard thing to put into words, but reading all of these blogs is comforting in that I know Im not alone.
And Dominic…last but not least, i have had the horrible nightmare paralysis. For me, its like I know I am aware that i’m awake and in my bed, but i cant move or talk. I feel like i’m trying to yell help or scream but cant. Its as if i’m willing myself to come out of that state and then, finally it happens and I feel like i’m back to reality and feel a huge sense of relief. It doesnt happen all the time, but has happened a lot recently with the med changes. I also cant sleep without taking xanax at bedtime. More and more i just get so upset that this is my lot in life to suffer from emotional problems. I know mine are primarily genetic in nature and are very chemical and not situational. I have basically not felt “right” going on almost 22 years now. Its just an off feeling and I have been in and out of Drs offices with odd symptoms. I don’t know if anyone who reads this will find themselves agreeing. I have a non specific auto-immune disorder, which i think has a lot to do with feeling like crap most of the time. I would love to hear from people out there reading this that have similar issues. ie. the curse of the faulty nucleus accumbens aka shitty wiring. pardon my french.
I hope one day, Big Pharma will do more testing on the withdrawal effects as much as they do on the side effects. I would love to stop being a slave to my meds, but until then, good luck to us all and its great to know that others are out there just like me. Sorry to ramble but this has been a terrible day for me and writing is helping me. Please post a response if anyone who reads this also has a positive ANA titer or any diagnosed AI disease.
goodnite!
Hey Mandy
I also have sleep paralysis although it has been years since it happened.
I’m the odd guy out here since I’ve had the swishies since I was a child (now mid 50’s)and didn’t relate it to the SSRI’s.
BTW–do your eye movements also cause a physical sensation down your arms and neck when you trigger the swishes?
The only way I can break the paralysis is to concentrate on moving something–ANYTHING! so I focus on my little finger till I can move it—then it all goes away.
In addition, I have an unspecified auto-immune disorder with ANA titer and RA titer. Had a bout with a ‘catch all’ diagnosis of poly-arthritis, an auto immune flair, which was probably just part of the whole “condition” (When I had MONO my WBC count dropped to 600 (1/10th normal) I haven’t been able to start a prednisone course for the RA because of other medical problems.
I wish someday to have understanding of the whole underlying cause since my many experiences had nothing to do with SSRI’s — but coming off them did trigger it.
Sorry about your plight Larry. I have never heard of the eyeball swishies being non-medication related. I have read about those that also have the sensation down the arms, but thankfully I have not experienced that. I have had so many somatic complaints over the past 20 years that it gets to me at times. I have a positive titer and the only condition I have is Reynauds. they thought i might have lupus years ago but many tests later i do not have it. My rheumotologist said i may be more likely to develop that or a specific AI disorder due to my elevated titer but he’s not sure.
My sleep paralysis only happens maybe once a year but has happened twice this month, so i can’t complain too much about that.
Since hearing you eyeballs in non-med related it sounds as though you have been spared the mental illness crap.
I wish you well and hope that your swishies subside someday. I have often wanted to go to Mayo for my many physical complaints as i question whether the docs are missing something. So far I have had several MRI’s and many other blood tests, but everything always comes back normal. Normal is ironic becuase I feel anything but normal!
cheers!
M.
Ok. This is really tweeking my interest in this whole thing. I am seeing so many similarities between each of us and the subsequent “conditions” we have been diagnosed with. Even down to the Reynauds which I have!
So….either these are common symptoms, these symptoms are linked, this blog has drawn together a very specific group of individuals with ‘rare’ conditions, or there is some common trait we all have that we are missing!
Can I ask we collect some more data for a test?
Please try to answer the following:
Depression is a given for most of us, but…
Are you taller than average?
High Blood pressure?
Reynauds? (poor circulation in hands and pain when warming after exposure to cold)
Trouble sleeping?
Drug use?
Alcohol use to the point of drunk?
At least two things you are anal about that seem very strange to others? (I CAN’T be in a room with doors or cabinets a jar and have to close them)
Bite nails?
Nervous twitches or active limbs? (I bounce my knee constantly and always have)
Unexplained pain?
Difficulty dealing with stress?
Smoke?
Unexplained Hearing problems?
Just a few. Trying to make a connection between us that our doctors obviously have not. Thanks lads and ladies! Smile!
In a hurry right now, but here are some answers for you Dominic…
Are you taller than average? NO
High Blood pressure? NO
Reynauds? (poor circulation in hands and pain when warming after exposure to cold) YES
Trouble sleeping? YES- always have had. never napped even as a child and need Xanax to sleep
Drug use? NO
Alcohol use to the point of drunk? Occasionally
At least two things you are anal about that seem very strange to others? (I CAN’T be in a room with doors or cabinets a jar and have to close them) YES, i used to be more so. For instance, if i was laying in bed and i saw my shoes on the floor and I didn’t like the way they were arranged i would have to move them. I HAVE to make the bed every morning, but can oddly leave other parts of my house messy. Dominic, I suspect the “anal” stuff you are talking about is probably a bit of an OCD, which i too have had.
Bite nails? YES, and i pick my cuticles till they bleed since I was about 17, I’m 40 now. I have stopped this before but i always end up going back to picking and biting.
Nervous twitches or active limbs? (I bounce my knee constantly and always have)-I actually had a EMG to test for ALS about five years ago because I suffered for about a year with constanct muscle twitching. It started in my fingers and hands and then moved down to legs and then everywhere. I also had numbness along with it so I was convinced it was MS or something. All tests including MRI were normal. The twitching subsided for the most part, but i used to have resltess legs more when i was a teen, and now i don’t notice it as much.
Unexplained pain? I don’t have a lot of pain, but do get chronic headaches.
Difficulty dealing with stress? YES! can’t handle much at all. I was diagnosed this summer with Adult ADD, which now makes sense after learning and reading about it. It will be interesting to see if any of you have this…
Smoke? Not anymore but did for 22 years
Unexplained Hearing problems? NO
When i get back on here later, I can list many other weird things I have had including complete hand paralysis that came out of nowhere! We had to call the paramedics, but they said it was due to hyperventilation or low potassium perhaps, and when they had me deep breathe i was able to move them again. Went to Dr. the next day and had more tests, but NOTHING. People’s hands just don’t go paralyzed!
I’m just a very hypervigilant person, worry constantly and am scared of dying. But all the psych stuff aside, I know I have very real physical maladies are not being diagnosed and it’s so frustrating to never feel “right!”
Talk soon!
oh and i forgot to mention two other things that may be interesting….I have Irritable bowel syndrome and I have mitral valve prolapse…aka a condition that often goes along with having a heart murmur. It is benign, but does cause occasional palpitations which i hate and I have had several episiodes of tachycardia (racing heart beat) in which my resting heart rate can get up to around 120bpm.
Hey guys, I am the developer and administrator for Blog4Brains. I am so moved by you all coming together like this and helping each other out, I am willing to build you all a separate site/forum to use. I could design and develop it as a site like other “rare” conditions for people that share the same experiences. Would you all be interested? This way, it would be all about you guys. You could have private discussions or pubic ones. Have memberships if you wanted. I just want to be able to help out.
I have a mother that suffers from a rare condition as well, and it would be nice if she had a community of people that could share experiences like this one.
Mandy: Have you ever been tested for vitamin B12 deficiency? You may also want to get tested for lead poisoning or heavy metals in general. Like I said prior with my mother, I have done some serious research into nervous system problems, and lead poisoning and B12 deficiency are often missed. Just a suggestion.
Unfortunately, doctors rarely care about chronic lead poisoning. They only concern their medical practices with acute toxicity. I would also concentrate on lowering inflammation and insulin levels. Just some ideas for all of you.
Anyways, I am available for the site development if you all are interested. It would cost you no money, unless you wanted to donate to the cause. You can contact me through this website or comment here and I will contact you personally.
Take care and good luck.
[Cerebrl]
Hello again gang of misfits
I’ll get to the listed questions in a bit but wanted to reply directly to Mandy
Another common hit. I also have Mitral Valve Prolapse but it’s mild and only acts up just prior to and during a bacterial infection…like a respiratory infection.
Irritable bowel ; check. Also have a colitis but colonoscopy is normal.
More info: I’m of Scottish, Irish, German (whitey) descent with dark hair and eyes. 5′ 11″.and have a type of vitiligo (genetic trait of lack of pigment in patches of skin)—white areas where ever I had a wound that do not tan. Not real scars, just lack of pigment after healing.
I drink a gallon of coffee a day.
Others?
I would love to have a separate site dedicated to understanding our electric eyes. This would be very valuable to me.
EYE TO EYE, how’s that as a title for your new, proposed, special-interest web site — if you all decide to have one? Or EYE-TO-EYE?
–30–
How about “Eye-Hear Eyes”.
Will
Yes! A separate site would be awesome! I think I may have stumbled upon something with the symptoms and conditions that have been mentioned here by the many bloggers. I find it absolutely crazy that so many of us share such similar conditions that in and of themeselves are completely unrelated….or are they?
I have Raynauds, High Blood Pressure, Depression, AADD, Nervous twitch, Cholistis, Irritable Bowel Syndrom, Seasonal Effective Disorder, Unexplained pain, Can’t deal with stress….literally lose my mind, the list goes on. Far to many similarities for it to be coincidence.
I would be happy to help host a site devoted to those amongst us that have heard the doctor say, “Physiologically and physically, you’re fine!” All that just minutes before you burst into tears on the way home, consider driving under the semi next to you, then start feeling crazy and guilty about having thought about it. Nice:) Thanks for posting back you guys. I am collecting lots of data that hopefully I can use to come to some solid conclusions. Smile:)
Oh, and a heart murmur!
Hello!
Just like the rest of you, I think a separate site for our mystery illnesses would be great. Have any of you ever watched the show Mystery Diagnoses? I feel like i could be on there! While I don’t want to be diagnosed with something bad, I really wish I could be diagnosed with something, because if I feel this shitty, I wish i knew why!
First getting back to Larry, I am of EXACTLY your same descent! Dad was full Scottish and Mom mostly German and some Irish! I am dark haired with very dark eyes. Weird eh?
Dominic…what is your descent? So you have adult ADD too? Hmmmm. so interesting. I also forgot to mention that when i have a viral illness of some kind, be it a cold or respiratory thing, I get a rash all over my chest and part of my face and then it goes away within a day or so. I have had this since I was 15. again, Dr. has no idea why. I have studied a lot about medicine because of my probs and I really think this has to be autoimmune in nature maybe stemming from a virus. I know that all of my mental problems started after I had a bad reaction to a tetanus vaccine when I was 17. Life has never been the same sense. Any of you have a tetanus vaccine that went awry?
How old are you guys? I’m 40. Thanks to Cerebrl for offering to host a site. You are very kind. I’m on board so keep me posted.
I will keep thinking of things that we might have in common…and you do the same.
Aye Eye and Hear Here! (And Chip chip hurray!)
or
Give em the Heary Eyeball
I like the idea but will say this blog is working as is.
I’d bet the heart ‘murmur’ is a Mitral valve problem. When it leaks it makes sounds–AKA ‘murmur’. Any cardiologist or up to speed nurse could tell what exactly the murmur is from. Search the net for S3 (a specific heart sound), split S3, S3 or ventricular gallop rhythms. Some sites will have WAV files and, with a good ear and practice (and a stethoscope) , you can hear it for yourself. Unless, of course, the ear swishes don’t drown it out. I’d suggest not moving your eyes while listening) Try here <href=”http://www.ctcadn.com/heartsounds/Systolic Mitral Prolapse.wav” and for a great list of sounds try here <HREF=”http://www.ctcadn.com/heartsounds.cfm”
cerebrl,
It is very kind of you to offer a separate site for this discussion. Some weird misfire is happening for all of us to hear our eyes move and make random crunching sounds. Whatever the site is called, please make sure keywords etc. are sufficient to keep the URL easy to find, and draw folks who, like me discovered you all in a Google search for (”sound when eyes move”). That set of keywords brought up the best results, including this blog, on the first Google page.
I mentioned this “symptom” to my Dr. today, and she nodded furiously when I started to talk about SSRI withdrawal in some way being implicated. She said it may not be the drugs, or withdrawal, per se, but the change of serotonin levels; which could explain why even some folks who aren’t taking these drugs also experience the “sound of eyes moving”. Either naturally occurring or affected by various drugs, serotonin levels fluctuate, and the brain has some work to do to attempt to keep the levels high enough. There are enough processes affected in order to help the neurotransmitters do their job, that interrupting that hard earned balance by changing the drug or dosage, will naturally have an effect. Going off any anti-depressant, some more than others, must be done very slowly. Also, because lack of sufficient serotonin is a reason for taking the anti-depressant, it stands to reason that people who don’t take the drug (when it would help them establish the correct balance) might also suffer from the “side affects” (low levels of serotonin) of not taking the drug at all. According to articles I have read online, Effexor and Cymbalta are especially prone to causing withdrawal issues, and if you are considering changes, Paxil is often used to “switch” to first, and then easing off the Paxil is a much easier transition.
If anyone is keeping track I also have ADD, and C. Pneumonia (persistent variety) nothing else is “clinically” wrong, though I personally think I have Chronic Fatigue Syndrome (now called a “serious disease by the CDC!) most of us seem to have things that no test can diagnose. All we can do is make sure we are tested for things that actually appear on tests, and hope we can exclude known diseases. It is one thing to put a name to a condition, but most of these “mystery diseases” have no cure or specific diagnostic protocol and doctors give up on “unnamed things” they can’t treat. The best we will be able to do at this time in history is medicate symptoms. I am in my ninth year of total disability and no end in sight even though my doctor and I have researched a lot of these things and thrown a lot of medication into the mix. It does seem, the more we talk here, that it is affecting our central nervous system in some way, and that serotonin levels seem to trigger certain responses.
I started up a network for us. I hope you join. The site is here:
http://listentomyeyes.ning.com/
I hope this helps, start it up by adding any helpful info for others and maybe your story. I hope to send this to a learning hospital to see if they want to provide research to our group.
Take care and remember it is a new group, so watch for updates and add your stuff, that is how it grows.
:0)
Wendy
http://listentomyeyes.ning.com/
There is also a chat I put in the group, so we can chat there, have a forum and more…
See you there!
Hey all, since I have had some positive feedback with the site decision, I am going to start the development. It should not take me too long as I will just utilize Joomla, a content management system, to start things off. I will go ahead and use a domain that I have owned for a while — UnknownEtiology.com (which basically means condition or disease of unknown origin). I bought this domain after years of struggling to get my mom diagnosed for what she suffers with (still unknown to this day).
It could be a site for all people that suffer from things the medical community doesn’t understand yet, or will not admit exists. The whole rationale behind the site that I envision is a community of people sharing information on many levels. We don’t have to use this domain, but it would make my job easier, and it could help many people that suffer from doctors telling them nothing’s wrong while they are suffering from something.
How does that sound? I would love to know if some of you all would like to help manage it, write for it, and if some would like to help moderate the forums. I would also appreciate any donations to help with hosting costs and time spent developing the site.
Talk to you all very soon! Take care.