DAILY AURA FOR 2 YEARS! CONSTANT DAILY VISUAL DISTURBANCE - Chronic daily migraine

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alexc_77
New Member


Date Joined Nov 2013
Total Posts : 1
   Posted 11/27/2013 12:41 PM (GMT -6)   
Hi there

Its great to learn there is some possible relief out there and for those of you where there isn't keep going and looking for alternative treatments.

I am a 21 year old male and used to suffer from the classical migraines in my teens, I now have a constant visual aura that is a lot worse in artificial lighting, against walls etc and very much how you described in the first post.

I don't have the migraine headaches anymore (touch wood!) I just have this constant aura which drives me absolutely insane! I also get these waves of feeling really strange, and feel detached from the world, sick and just weird! Does anyone else suffer from this? It may just be anxiety or as a result of what is causing the migraine.

I have not found a successful treatment yet but find a good night's sleep and a healthy diet does help to an extent.

Can I ask for some recommended medications that can help? Obviously the aura won't be eradicated but anything that can helpppp???

mafixit
Regular Member


Date Joined Nov 2011
Total Posts : 20
   Posted 11/29/2013 2:59 PM (GMT -6)   
First of all, stop all GLUTEN. It is a free treatment and will not hurt you to try to detox your body. It's easy - don't eat anything with wheat. Natural fruits and veggies, meat, fish and poultry. Try it for a month and see how you feel. You seriously have nothing to lose.

I have been battling various symptoms (headache, dizziness, eye muscle/fatigued eyes, all over muscle aches and stiffness, shakiness, neck pain, hot flashes) for almost 3 years, with no answers. I keep a daily diary. I am in the middle of menopause now.

But the one disturbance I want to find an answer for is this: Every day I wake up with what appears to be an ocular migraine. It is a spinning shiny circle in the middle of my vision. I cannot tell if it is one eye or both eyes. I get up and with 15-30 seconds it is gone.

I have had MRI's, an MRV, CT scans, bloodwork, vestibular testing, etc. Everything is "normal". I feel like this is related to my daily headaches - that something somewhere is pressing on something and we just haven't found it yet.

My doctors look at me and shrug their shoulders. I do have one doctor, however, that is thinking outside the box and we are trying different tests and different supplements. She is an MD but gears towards a naturopath in her thinking. We have resolved the hot flashes, but are still looking for answers to the other issues. I have been doing the MELT METHOD and have gone gluten-freefor my aches and pains for the past month and they have almost disappeared. ( Fibromyalgia my ass. ) Accupuncture also helps, but you have to do it regularly. I had bad lower back pain a couple of weeks ago, went in for treatment and within a day my lower back no longer hurt - and it was BAD.
ed
I had a cervical epidural for my headaches last week, but that triggered an even worse headache. That whole side of my head and neck hurts so bad and nothing will take it away. I have to deal. I have had trigger point injections, botox injections, tried numerous medications. I give up on medications. The supplements I am on now are based on neurotransmitter test results. I started the protocol last week. We need to give it a month. I will let you know if I experience any relief.

They changed my diagnosis from migraine to occipital neuralgia, but the insurance company will not approve occitpal nerve blocks. If this epidural doesn't work I will try those and just pay cash. The doc gives a good cash discount.

Health to you all. Someday I will find my answer. I refuse to give up and trudge on.

Karen from Arizona

Twinkles30
New Member


Date Joined Dec 2013
Total Posts : 1
   Posted 12/18/2013 5:01 PM (GMT -6)   
Hi there people, I started my first ever migrane last august when I was heavily pregnant...I was at work and I looked at my computer screen and I was like crap I can't see, then it was like is this for real so my immediate reaction was to jump up grab my car keys and flee for I was soo disorientated and was just thinking I need to get home this is vertigo I need a cyclizine and need to ly down , because in the past I would have taken Bouts of vertigo...soo I jumped in the car and my vision got worse was left eye, and my whole head started to go all strange I rang my hubby while I was driving omg Im going blind, I'm going blind help me what's happening ? He was like pull over ring an ambulance I thought the crap had hit the fan , I'm bleeding internally or something bad so I rang an ambulance screaming was pulled over in the side of the road every shape as I couldn't see had spread to right eye my heart was pounding then I passed out then I started uncontrollable vomiting and my bladder and Bowels and everything wanted to empty and the ambulance was there at that point I then started to jerk all over the place like a fit ... Anyway went to hospital, nobody could figure this out seen that many doctors, was told low bp etc...finally got brain scan coz they then thought I was having mini strokes as I began to take more if these attacks which left me house bound and frightened . Neurologist finally says silent migrane it's auras your having ...high oestrogen and stress main triggers when baby born it should pass....anyway baby came and the scotomas as you call them common auras settled ...BUT I have permanent flashes of light constant dizziness , vertigo weird moments , can't look at white walls or bright blue skies as they glitter , see like wee spidery legs and circles ...this is destroying my life I am an accountant and I cannot deal with the dizzy vertigo symptoms I do take cyclizine and I have to say this straightens me up to get me through the day.....I am now getting the migrane pain which I thought was sinuses turns out yet again to be migranes ...also ringing and blocked ears and explosions in my head freaks me right out I'm now taking panic attacks at the symptoms it's a fecking nightmare and my loved ones are like eh? I feel soo alone with this illness...my Nero starting me on beta blockers propranolol I'm gonna start these at Christmas incase any bad side effects as I've a one year old apparently they only give you cold hands and feet and are brilliant for migranes..the doc says you need to break the cycle a migrane has to burn out soo if meds kill it maybe I can come off them and migranes will come and go now and again not all day every day..sorry for long story soo glad other people have this as I feel like I'm nuts!. Also anyone try these beta blocker? Also cups of tea make me spin instantly so caffeine a big trigger for me ... nono also I have constant visual snow worse with lack of sleep and I would defo say stress is a big trigger ...but it's always there just minimised or maximised on a particular day! I've just turned 30!.

endoplasmicreticulum
New Member


Date Joined Feb 2014
Total Posts : 1
   Posted 2/25/2014 1:49 PM (GMT -6)   
aajohn05 i feel like we have very similar stories here ( i am also 24y/o female with auras) my auras began when i started taking loestren. i was in a daily, persistent, constant 'fog' and severly depressed, self harming, and attempted suicide. i stopped taking the birth control when my mom called me to tell me stroke risks related to taking estrogen. i was convinced i was about to have a stroke....anyway i didnt have a stroke but my migraines have since permanently converted to auras. meaning, i used to have migraines monthly, hormonally, starting when i first got my period. once i went on birth control (i caved after years of my gyno telling me birth control was the solution to the migraines) the migraines were accompanied by aura which was a terrifying thing in a time when my gyno, the ER doctor, and even the first neurologist i went to were not aware of migraines with aura and told me i was having panic attacks, bad eye sight, you name it. anyway, now that i am off the BC i very rarely get the headache part of the migraine it is almost always exclusively the optical disturbance. which is psychologically harder for me to handle and occurs much much more frequently. i have had one for 3 of the past 4 days.

cakeslady
New Member


Date Joined May 2014
Total Posts : 1
   Posted 5/12/2014 8:18 PM (GMT -6)   
Wow! How great (yet sad someone else has to go through this) to find others that share in this sort of trouble.

I have battled vision issues over the last probably 17 years. Geeze, didn't realize it had been that long. I began having Aura/Optical/whatever they're called migraines. I would see the classic zig zag and bursts and snow that would move from one eye to the other. It was somtimes followed by a headache, sometimes not. Within the last 13 years or so, they were accompanied with paralysis in my face, tongue, lips, hands, fingers, arms. That is some pretty terrifying stuff. I'll even have them where I can't talk. I think I'm saying something but it sounds much different. It's basically like a stroke.

My sister and niece have them pretty regularly and my Mom and brother have had a few in their lifetime. So it's basically genetic I'd guess. I've never been to the doctor for it because of course I am so scared to know if something else is wrong. They've brought me much anxiety, guessing when and where the next one will begin.

I've worn glasses since I was 18 months old and during one of my most anxiety times I went to the eye doctor and she sent me to a retinal specialist and they did find some scarring but had to explanation for it.

Things only got worse. I've come pretty used to the floaters, and flashes and such but the one thing I can NOT get used to and that keeps me stressed out is the wavy vision. I explain it as how gasoline or heat waves look like in the summer. It's sort of pulsating. Happens mainly when looking at sky or even on cloudy days. Has happened to me twice INDOORS. Both times in very white rooms.

So what I have done is revolve my life around this. I don't go anywhere alone and I don't drive myself if it is during the day. If I do it's only a short distance and I'm normally in panic mode the entire time. I don't go anywhere that's going to be white rooms or sunlight in the rooms. I don't stay outside much longer than walking in or out of the house. And I ALWAYS have my sunglasses on. I wear them in clouds I wear them in sun. I wear them indoors most times.

I just want to hear others that have this same issue. I feel so alone and am constantly exhausted by working around this problem. I should add that I have terrible blind spots in my central vision. Anyhow, I used to LOVE the beach and LOVE going on the boat and LOVE swimming. And I haven't been able to do those things in many years. I won't ride in any vehicle other than mine because I have limo tint on the windows. I know the husband gets so upset with me because I don't do any of the things we used to do anymore. He doesn't understand. My Mom drives me everywhere. I'm 32 years old and my Mom is taking me grocery shopping and to the doctor and anywhere I need to be. I stay away from the eye doctor because I'm scared and logically I know that is so stupid. I am a college graduate (could drive back then) and I know better.

Sometimes I wonder if it has any connection with migraines. I wonder if it's damage left behind from them.

Would like to hear if anyone has the pulsating, wavy, heat wave issue.

Thanks for listening!

LisaLuLu
New Member


Date Joined May 2014
Total Posts : 1
   Posted 5/19/2014 4:22 PM (GMT -6)   
Kaymarina or anyone else,
Have you found any medications to prevent these aura episodes. Mine last around 6 to 8 weeks at a time. It drives me in sane.

Tess2
New Member


Date Joined Jun 2014
Total Posts : 1
   Posted 6/7/2014 1:08 PM (GMT -6)   
Hi. I have a history of migraine with aura and am 52 years old.
Five weeks ago I had 3 migraines in one day and then for the days that followed further migraines.
3 weeks ago I had a migraine but the aura stayed and it's been there ever since in some way or another!
I've had carling ants (spots), geometrical shapes in red, green, purple and orange, squiggly worms, hallucinations, ghosting and a red and green pulsating light. The worst thing is my blind spot. A the top right hand side of my vision is a blind area which flickers. It stops me from seeing the ending of words. I hate it and it's causing me panic attacks too.
I'm diabetic and have bad circulation so doc can't give me beta blockers. I've been on Epimil and it's done nothing apart from sedate me!! I'm lowering my dose drastically now!!
My hormones are high due to the menopause so I was thinking that might be the cause but I really don't know.
I just want to be able to see properly again and get out of this hell!!!

Lightshow
New Member


Date Joined Jun 2014
Total Posts : 1
   Posted 6/24/2014 9:11 AM (GMT -6)   
Hi everyone. I am new to this forum, and found it my chance. I live with constant visual disturbances which are making my life unbearable as they are continuous and getting worse by the day. Nobody has a clue what is wrong. I have advanced glaucoma and for a long time the specialists kept telling me that this was the cause, but now they seem to think it is neurological.

I have had migraine with aura since I was 12 (I now now 56.) When I hit my mid 40's the auras disappeared, but came back unexpected when I reached 50. I had two multi-coloured auras in 3 days (they had always been white zig zags before) and these were preceded by very blurred vision and tingling in my hands and feet as the aura was subsiding.

A day or so after the second of these new type auras I was ironing a white sheet and realised that it did not look white, it was as if it had a pink lacy pattern all over it. Since then this pattern has been joined by patches of other colours, although they were quite muted and did not stop me driving, etc. The only thing which was really a nuisance was a permanent runny nose and flashes of colours out of the corner of my right eye when I was stooping or exerting myself. My vision also used to blur whenever I bent forward, and was accompanied with pain between the eyes when I did the hovering, mowing the lawn, etc.

Then, two and half years ago I had another bout of blurred vision and thought that another migraine was on its way, but it never came, and the blurred vision has continued to get worse. I had to give up driving last year and can no longer see to read or watch television without difficulty. The vision is getting more cloudy by the day, and for the past three weeks it is as if I have a permanent migraine aura - my vision is covered with little coloured dots and a big coloured shape in the right eye. The vision shimmers and shakes. I also have awful pressure behind my nose and in my throat - it feels as if something is swollen there.

I have had so many tests you wouldn't believe it - several MRI brain scans, two lumbar punctures, blood tests, ENT, max fax, cardiology, etc. The only thing that has been found is that I have a very narrow coronary artery, although they don't think that this would cause the visual disturbances. The latest thinking is that it may be something to do with a cerebrospinal fluid abnormality, so I am due to go in for ICP monitoring at some point in the future.

Nobody has ever heard of the coloured patches before. I have found a Daily Mail article online called 'The Girl with Kaleidiscope Eyes', and her vision is very similar to mine, although she is also living with it constantly. It would seem there is no treatment.

I have seen a migraine specialist at King's who says I have visual snow, but it's more than that now. (He's a very good specialist if you have migraine, chronic daily headache or cluster headaches by the way.) The effect on my life is awful though, and it's good to know that I'm not alone. I'd be interested to hear from anyone who has anything like what I am living with.

Thanks so much.

Dusty444
New Member


Date Joined Jul 2014
Total Posts : 1
   Posted 7/8/2014 10:16 AM (GMT -6)   
I am 60 year old female who has been getting Ocular Migraines for over 30 years having them sometimes twice a day- having headaches sometimes but more often not. I suffer from Post Traumatic Stress and Panic Disorder and am Vitamin b12 deficient, I had tests by doctors years ago for the Oculars and they advised me what it was and that was fine. Well much has happened over the years and need advice now as I am getting really worried and it's started again 12 months ago and seems to be coming more frequent, scaring me especially when I see fragmented colours of pink blue green and other colours, it takes approximately 30 minutes before they go leaving me with light sensitivity for days and nausea wanting to vomit which is embarrassing me so much as most times I'm alone and in a public area. Please let me know if I have a major problem I am so worried and frightened. Do you think this could be something much worse or just a Aura Migraine, Thank you kindly. Regards Karen

I'm really frightened as the aura migraines are happening more frequently lately and making me very anxious.

Please help !! cry

redbull007
New Member


Date Joined Aug 2014
Total Posts : 4
   Posted 8/2/2014 7:48 PM (GMT -6)   
Here Is The Solution

You can be sure that I went through some severe pain trying to find it, and I only have Auras without Headaches. You can trust me since it worked for me, I solved my crazy, bizarre constant vibrations in my vision. No drugs and no surgery can do that, just an understanding of the causes of the problem.

What exactly is sensitivity to light?

Exposure to a specific light, even for a second, causes the periphery of the vision to vibrate in variable frequencies and strengths, that sometimes can include vibrating shapes. It can also vibrate the middle of the vision: the farther the object is placed – the more noticeable the vibration in the middle. The more you are exposed, the longer the vibrations will last, the more strength it will have along with higher frequencies. The larger the eyes pupils sizes at the moment, the stronger the exposure effects, so one second of exposure just after waking up is equivalent to much more exposure time at daytime. There are no direct relationships between those variables, so those vibrations can lasts for days even after only several seconds of exposure. It can also start in the same time of the exposure in the following days following a non exposure period, something that is probably related to the Circadian Rhythms. The problem does not related to the brightness of the light. Sometimes it's like falling asleep with it and waking up with it, as then it can be even stronger than the other day before sleeping. Also, night vision is severely disturbed, as it's severity depends on the strength and on the frequency of the vibrations at the moment. Regular auras do not affect night vision that much.

To make an educated guess, this sensitivity is seem to be due to a permanent association that is created at the peak of an aura Scintillating Scotoma flashing zigzag shape between it's vibrating level and the vibrating level of the lights that are being exposed to during this specific time. In order to acquire such an association, the frequency of that flashing zigzag (or any vibrating aura shapes) should so be so high, that it probably reaches close to the level of those of the lights outside. As it happens, the eyes get sharply hurt. Usually, it happens around the peak of the development of the zigzag shape, so it gives enough time to respond and shut down any powered lights. If you did not do that, like me, do it next time and keep on reading this article.

Any AC/DC-Powered lights that you were exposed to during a strong flashing shapes, usually so severe that it accompanied eyes pain, will permanently creates lighter, dimmer vibration of that specific shape event along with more general vibrations all over the visual space. Note that some events can creates just constant vibrations without shapes.

There are 2 types of vibrating lights in the modern era:
1. DC. If you were exposed to one type of a battery-powered screen during a severe flashing zigzag aura, you will probably never be able to look again at, even for ONE second, ALL types of DC-battery-powered screens: laptops, tablets, cellphones, smartphones, MP4, MP3, Clocks, emergency lights, etc.
2. AC. If you were exposed to regular light bulbs or florescent lights during a severe flashing zigzag aura, you will probably never be able to see your houses' lights again, even for ONE second. Now that can get tricky, as the voltage supply that creates those vibrations in the AC-Powered lights can vary at different places around your house, or it can be the same for the entire neighborhood, so trials and errors must be done cleverly to isolate the specific causes. Note that any lights connected with an AC cable or directly to the walls will vibrate just as the lights in the ceiling. For examples, TV screens, Computer Monitors screens, small lamps, wall-night lamps, monitoring spot lights, radio screen, microwave screen, etc.

If you were exposed to only one type of the two, you will probably be able to live your life using only the other type of lights. If, like me, you were exposed to both types, you have to MOVE to a new place, somewhere else, with some trials and errors to ensure safety, and drop off immediately any battery-powered screen. In your new place, use only AC-Powered monitors and use only telephones with AC-Power cable and with a wired receiver. Never ever expose yourself to those lights again, it is in your control. As you prepare to check your new apartment, go vibration-free for at least several days by living outside your house so that you will be able to assess the new places's lights immediate vibrating effects (to do so in daytime, go to a dark place, such as a bathroom, and look at the wall to see any vibrations). If not possible, restrict your life temporarily to sunlight hours, and put on an Eye Mask Shade at your house and be as a blind-person for a while, because only closing your eyes is not enough to prevent a dim light to come in, as it does related to brightness. There are no better options right now, and people will think that it is weird, but who cares. You should also keep in mind that, unlike me, you may not be able to be exposed to any AC/DC light anywhere, EVER. Even then, you can survive well, believe me, at least as well as our ancestors did.

Notice that if you are not exposing yourself for several days to those lights, the vibration will begin to diminish, even though you will probably have temporal and even strong relapses probably due to the Circadian Rhythms at certain hours, especially at night times, due to heavy lights use in these hours and the large pupils size at this time.

In addition, those vibrations alone cause stress, impulsivity, anxiety, depression (and probably many other mental problems) after controlling many other variables in numerous cases. The moment their strength and/or their frequency get to a moderate level toward an exposure-depended recovery, you will suddenly feel a lot better, as if you are a new, not mental-degraded, person. No CBT method and no relaxing technique can help you as the vibrations do not respond to these methods, and you will quickly discover that you cannot really experience any relaxation whatsoever, perhaps also due to the short of focusing ability that the vibrations impose. In addition, a history with anxiety and the co-morbid depression can be involved in the simplicity of getting those periodic "relapse" processes.

As the vibrations occurred for prolonged periods of time, no other aura symptom can be clearly noticed other than those vibrations in the space vision. If suddenly the vibrations become stronger without greater amount of exposure to those dangerous lights, it can be assumed to be triggered by the other new symptom that was probably blocked by the constant vibrations. Moreover, vibrations in vision is probably not a migraine aura, just a devastating constant association of it, and perhaps of the whole migraine. As you get better and be able to notice other aura symptoms, for example Micropsia, Foggy Vision, or "Heat Waves"/"visual snow", Enlarging Objects, Double-Vision, any other Alice in Wonderland Syndrome symptoms, any new real Scintillating Scotoma shape or any other normal symptom, you can be sure that you are getting better.

No new real advances have yet to come up in recent years. In fact, not only that there are no solutions to auras, there is a great mystery around it, as today scientists admit that they don't really understand its processes and its causes.

Good Luck

Post Edited (redbull007) : 8/6/2014 2:59:46 AM (GMT-6)


moizme
New Member


Date Joined Aug 2014
Total Posts : 1
   Posted 8/5/2014 3:15 AM (GMT -6)   
@my lovely (OP),

I just wanted to throw my 2 cents in, in response to your original question. I've had, and occasionally continue to have, something like the visual problem I'm interpreting from your post. I'm now in month 20 of what began with sudden, severe vertigo, and my head automatically dropped so I was looking at the floor - the floor looked jumpy, almost like sort of a slow vibrating. (Not unlike the way Peter appears to Olivia, if you've been a Fringe fan.) It didn't last long but I've had some whacky visual stuff crop up since then, and my auras and vertigo and headaches grew progressively worse beginning with that incident.

I think u mentioned someone saying it was something usually related to vertigo? I'm wondering if you have nystagmus. I don't have it very often but I know I blink a lot when I do if I'm around other people because it feels weird, and i also tend to look down to keep from jacking up the vertigo, so only one of my many doctors has ever witnessed it. I never tried to determine if the jerking of my eyes affected my vision (but why wouldn't it?), because mine's related to vertigo and I'm busy worrying about my head spinning off into space. I had a super nice teacher in high school who had constant nystagmus. We never talked about how it affected him, but I could tell he definitely had some vision issues, and he did not drive.

Anyway, I hope you're doing better. I'm super pissed off that my life is at a standstill and terrified that I'll probably be living on the streets because I also have cognitive impairment and can't get all the stuff gathered that's needed to apply for ssdi or ssi. But I'm older than u are, and it's really unfair to miss out on so much of life especially when you're young! I hope you have family and friends supporting you. Good luck!

Ian&lisa
New Member


Date Joined Aug 2014
Total Posts : 3
   Posted 8/6/2014 4:25 PM (GMT -6)   
Hi becky , so sorry to hear you been in so much pain , I was also a 24/7 migraine sufferer for 3 years and know exactly how you feel . I had everything from mri to mri contrast , Botox , nerve blocks , aquapuncture. Ect ect the list goes on ,. Anyway to save boring you with all the horrid stuff I finally found something that gave me releif and was like a miracle , its a device called Cefaly its amazing I have it on my head right now seriously lol, I got mine from a website migraineheadacherelief.org.uk and they delivered it next day and that was that, it was expensive at around £300 but its mine for life and their are 0 side effects so I can use it as mich as i like, and to be honest after getting relief i consider it a tiny amount of money even though all I had at the time . ;)

Ashbee09
New Member


Date Joined Aug 2014
Total Posts : 7
   Posted 8/28/2014 1:09 PM (GMT -6)   
Hello, has anyone linked visual snow to there neck a cervical spine issue. Mines started about 3 months ago, before this had perfect vision all my life. Mines first started out as really blurry vision and photophobia then a couple weeks later I noticed the static, flashing light, after images & etc. Thankfully the blurriness has gotten better and I can still drive. My theory is that this is either neurological, vascular (blood flow problem) or a spine issue especially in the neck. When this first happened when I lay down I noticed my vision would get really weird and cloudy and when I got up it would take a couple minutes for me to be able to see anything. Ive never had that problem. I've always been someone who likes to sleep a lot or take naps. Heck in high school during summer breaks, I would literally spend all my time in bed. And never had a problem with my vision. That's what scares me, that this suddenly happened and has yet to go away. Before this happened I was in the beat shape of my life worked out a lot, not over weight. Now when exercising the static gets worse. I've never had any major health problems other than a little anxiety and occasional headaches but a nap would take that away. Over the last couple years I have had bad back and neck pain from lifting wrong, poor posture and I guess sleeping wrong. Maybe it just caught up with me. I'm wanting to get an mri of my spine, I'm betting it will show something wrong. I'm starting to get used to the visual snow. But it's hell waking up everyday with constant head pressure and excruciating neck and back pain. I feel like my head is to heavy for my neck. I feel like my head is about to blow up. I just want some relief =/.

Kittykatyumyum
New Member


Date Joined May 2014
Total Posts : 4
   Posted 9/16/2014 1:55 AM (GMT -6)   
Hi if u pick this up I too have almost identical symptoms to you and would be good to chat

shawnie35
New Member


Date Joined Sep 2013
Total Posts : 8
   Posted 9/16/2014 1:33 PM (GMT -6)   
I am so relieved that I stumbled upon this thread because I have been researching my aura problem and until now I haven't come across anyone that was going through the same symptoms as often as I have been going through them. I was diagnosed with fibromyalgia in may of this year but before that I was suffering from the occasional aura without migraine. My very first episode was in mid April of 2013 and it terrified me! I thought I was having a stroke. After that I was getting them occasionally, sometimes a few days a week then it would go away for a few months but it still caused me extreme anxiety. I had a brain and spine MRI done and I saw an eye specialist last year and both tests were normal so I didn't think much of it because the episodes were not happening very often. As of now I have had 4 aura episodes in a row the past 4 days and its really affecting me and my quality of life. I just started a new part time job at a nursing home as a receptionist and Im scared im going to have episodes while at work because I have to use the computer screen and be around fluorescent lights for an 8 hr period 4 times a month. Not to mention the extreme anxiety I feel during an episode, even though it only lasts about 25 minutes. I also experience vision problems throughout the days lately that include blurred vision, dots in my eyes and any type of exposure to light affects me. I am 36 years old and I don't want to be housebound and it seems like it is heading that way. Thanks for listening.

shawna

Kittykatyumyum
New Member


Date Joined May 2014
Total Posts : 4
   Posted 9/16/2014 3:18 PM (GMT -6)   
Hi Shawna I too have fibromyalgia and also chronic fatigue syndrome .. Constant visual aura and intolerance to reading etc it's very frustrating isn't it. Life changing. I use sun glasses a lot inside and out. And have looked at voice activated software. I do use an iPhone and speak my texts and emails to reduce the impact on my eyes then migraines. I have rizatriptan prescribed for the migraine pain which have worked very well but it dosnt affect the aura.
Rest is a winner for me .. And changing activities .. Not doing the same thing for too long. Also pacing myself. All easier said than done.. I'm not great at it but I try. Also I find breathing properly helps as I tend to shallow breath and I notice if I breath with more purpose it helps my vision sometimes. I also have linked up with a service that works with visual impairment and they've been really helpfull. I also found I had a low vit d level by blood test which the dr put right. Apparently common in fibromyalgia.
I am sorry you are going through this and hope you can find some solutions to help you. Try to keep going out every day.. Keep your friends close and I hope you have a friend who can understand your needs and will support you. Best wishes kitty

shawnie35
New Member


Date Joined Sep 2013
Total Posts : 8
   Posted 9/16/2014 4:07 PM (GMT -6)   
Hi Kitty, thanks for your kind words and support. This is still a little new to me so I'm trying to not panic as much with each episode but it's really hard sometimes because I hate it when I can't see, even if its temporary. I have friends that have had aura migraines but not as often so it makes me worry, wondering if something else is going on. I talked to my doctor today and he did refer me to the same neurologist from last year, I will probably have to wait awhile to see him though. It's frustrating though because my doctor, as well as many other doctors, treat me as though I am crazy or just that it's my anxiety and it really upsets me. I can't stand it when people treat you as though you're a hypochondriac. They should try having these episodes frequently and see how they would react.
Anyway, I just hope I get some answers and preventative treatment soon because I feel like I am going crazy. Hope all is well, thanks again kitty :)

Kittykatyumyum
New Member


Date Joined May 2014
Total Posts : 4
   Posted Yesterday 1:02 AM (GMT -6)   
Hiya shawnie glad you've got a referral sorted.. Is it a headache neurology specialist ? If not perhaps check if u have one. Your certainly not crazy and I know that feeling of being seen as being over health conscious. It's soooo horrid to be feeling so rough and scared and have to ask for help. Especially when u don't get a healthy response. I eventually changed my local dr and have found a dr who is bright and sees the psychological process of the illness. Both migraine and fibro .. Because it's absolutely spot on to feel anxious about our situation it's a normal response but how easy it is to feel we should be tough and not worry.. Show me a person that wouldn't !! :)). And yes it is easy to be side lined isn't it if you've already got something going on like anxiety. I was labelled menopausal as I was 45 when it went pear shaped so everything was initially brought back to this .. Just a thought do you drink /eat anything with aspartame in it as I met a guy who stopped using this and he was better straight off .. Didn't help me though but just a thought. Also have a think about who could guide you on using the computer .. As I think you can adjust it ..dim the screen etc.
Anyway you take care be good to hear how your going on . Be kind to yourself .. Have a treat today just for you x

shawnie35
New Member


Date Joined Sep 2013
Total Posts : 8
   Posted Yesterday 1:12 AM (GMT -6)   
Yah i heard about how bad aspartame is and i check my food to make sure there isnt any in the ingredients. All i did all day today was wear sunglasses because i spent most of the day at the hospital waiting for my dad to have surgery and the lighting was horrific! Hate hospitals sometimes.

gogga1
New Member


Date Joined Feb 2015
Total Posts : 3
   Posted 2/13/2015 6:11 PM (GMT -6)   
Hi I my name is gogga, im 33 years old and I live in Iceland. I've had visual symtoms like the woman that made this post has for about 3and a half month now and im going insain ! ! I hardly cant do anything because my vision is weird as hell and I feel very disoriented at times. I have not been able to work for 3 and 1/2 month and have to live with my mom. I have been put on Verapamil for the migraine but that has sadly done nothing for me. I have been so anxious about this problem that I have been told that it is from stress and I was hospitalized to a mental institution but ofcorse that didn't change my symptoms at all. I also have tried 3 types of depression medicine but nothing works, the last thing they put me on is venlaflaxin (efexor) only been on it for 16 days though but not working still. I hate this condition and I cant live like this.... something I could try?? (Have had an MRI, blood tests, eye exam and ect
But everything is SO normal exept for one spot in my brain 1cmx1cm but he's unspecified and they say he has nothing to do with my symptoms and everyone could have this...
Any information would be good
Thanks
Gogga.

gogga1
New Member


Date Joined Feb 2015
Total Posts : 3
   Posted 2/14/2015 4:16 AM (GMT -6)   
How about you guys that have been experienceing this visual problem, how are you today?

gogga1
New Member


Date Joined Feb 2015
Total Posts : 3
   Posted 2/15/2015 9:06 AM (GMT -6)   
Hello nobody of you people here?

miss. bee
New Member


Date Joined Feb 2015
Total Posts : 5
   Posted 2/16/2015 6:31 PM (GMT -6)   
I was diagnosed with migraines. The doctor said I have had them since I was young. Well I don't remember that . Ur he said well you wouldn't because migraines cause lost of memory. In 2009 I was diagnosed with fibromyaglia. It got worse over the years and the more I think about it i use to put a heating pad on the back of my neck and on my head. In 2012 I had a fall if which I fractured my back and cause sacrum problems with a nerve. Fractured my tail bone. I just iced my back that night and went to work the next day. Need mind you I was already on pain pills but felt pain in my back. Just thought it was muscular . I was going threw a bad divorce and kept going cause I had bills. A year later when I finally got diagnosed with my back. And whipped my neck. Don't remember hitting my head on the stairs. This occurred in my basement. Then I was diagnose w post concussion syndrome and now PTSD. So I am on a lot of meds. But I get migraine every day . Since then from the fall my fibro got intensely worse. So for my migraines I take topamax daily. Sumatrphan and diflocen sodium if needed. Well the sumatrpban works well but the insurance only covers 9 pills a month. I wish I could take them every day. I have had nerve block shots and botox shots for a year until the last nerve blocks gave me three bald spots on back if my head. So in due time my primary told me to go to a radiology place to have my nerves reset. It is sulllse to lessen your migraines. They place a catheter up both nostrils and put lidacaine on them. It was a difficult procedure for me as I have anxiety . I get so depressed because of all my pain. I don't like taking antidepressants because they make me tired and bring me down. I take xanax and that helps to level me out more. I have sleep problems and have to take three at night 0.5mg each. And another during day if needed. Well k need more then that but it also helps my migraine. It has been two weeks since I had procedure done. The first day I smelled better heard better but my anxiety was everywhere and is. But then again I just started depakote which is suppose ty help migraines but makes very nervous and can t sleep . But they are red and I am allergic to red dye as it makes me hyper . Going to see doc tomorrow about my meds. But I have tried everything . The boss procedure helps a bit. I now don't wake up in morning with migraines. Now they start mid afternoon and last all day still. Going to get docs opinion tomorrow. And go over meds. Have u ever thought u may have fibro? As they can go hand n hand....but trust me I know the pain. I have to hold the top of my head sometimes just to have a conversation. I hope u will get better....or some type of relief!!

Mr1112
New Member


Date Joined Mar 2015
Total Posts : 2
   Posted 3/17/2015 4:56 PM (GMT -6)   
Hi all,

Really sad to see others are suffering the same horrific visual disturbances as myself. Im a 30 year old male, no health problems what so ever (other than this - what ever "this" is!?).

Before I tell my story, I suffer from classic migraine with visual aura, have done for as long as I can remember, I get a zig zig flashing shape in my vision which gets bigger and bigger, then after 30 mins it blinds me 50% in both eyes and fades over to my far vision and out of sight. As my vision fades back to normality the whopping headache sets in and thats me ruined for 3/4 days.

So my problems all started around 10 years when one day I randomly noticed my vision change, then over the course of that night I was very aware I couldn't see normally out of my peripheral vision in my right eye. It was all "hazy" and I just felt weird. I continued with the night but can only describe it as hell!! God knows what happened that night in my head because my life has never been the same since :(

From the next day onwards I just didn't feel normal and the hazy patch in my peripheral vision stayed. It caused great discomfort and really made me anxious. Various eye drs and ophthalmologists examined me at great length over the next 6 months as my symptoms grew worse but the outcome was always the same from the specialists... theres nothing wrong with you or your eyes, well I was given many other reasons such as its me looking for things or another was its the vitreous gel in my eyes tugging on my retina causing my problems etc. etc. one dr would tell me one thing then another would say thats rubbish and tell me something else. But i it would always end up at everything was healthy/normal. At this point I was being made out to be anxious and over reacting to things, even making it all up which was rubbish.

Fast forward 10 years and Ive been through hell.. Gradually over time that hazy patch has got worse and worse, it grew bigger and is now a big blind spot surrounded by oscillating wave patterns of different coloured lights. Oddly if I sit in a light room and suddenly make it dark Where the messed up vision is I suddenly see it very clear.. Its almost like a neon coloured tribal pattern oscillating round and round, it amazes me my brain or what ever can even produce something so unique! Its permanent, it never goes away, and it only every gets worse/more intense. Very very rarely do I have a "good" day where I think its just about bearable. Nothing has ever made it subside or reduce in size or anything. The pain that is associated with this messed up patch of vision is absolutely unbearable. It has been for years now and the pain is orbital around my eye and in my eye. It feels like my eye is going to explode. I literally struggle through every second of everyday in my life, as if what I see isn't disturbing enough, the pain is just unreal.

For years Ive been searching for something/anything that could help but Ive not found anything yet.

Ive had every test you could imagine ranging from multiple mri's to contrast mri's to EEGs to evoked potentials. You name it, Ive had it. Everything comes back clear apart from the EEG which showed abnormalities. Further tests cleared me of any forms of epilepsy and further mri's cleared me of possible occipital lobe cavernovas? (I think that was the name given to me.) Abnormal EEG was left unexplainable by the specialists.

Ive been passed constant back and forth between the eye drs and the neurologists; eye docs say its a neuro problem, neuro docs say they disagree with eye docs but they have no idea whats wrong with me. Its a constant circle. Ive tried many many meds from triptans through to pregabalin, all basically make me sleep and never help.

My eye docs advised its all migraine related given i suffer classic migraines and my permanent aura is similar to that of the classic migraine aura I suffer. But neuro docs say thats rubbish and i don't have symptoms for permanent migraine etc.

To be fair I don't really ever get headaches its just the pain I get around my eye. This sounds weirs but its almost as though the messed up vision i see IS the pain I feel, because on my (very) rare "good" days if the messed up vision is not as intense then the pain isn't as intense. They are certainly one and the same thing in my case. I just wish I knew what the cause was and how I could possible ease the pain.

So, do I have any idea what is causing my permanent visual disturbance? Hmm, not really. Ive endured no trauma, nothing. Im very healthy. But.... I have noticed over the years when ever I have had a classic migraine with aura, 8/10 times when the aura fades away my permanent visual disturbance gets worse/more intense and basically kicks in to a whole new level of hell. Thats happened a lot over the past few years. So are the two related? It appears so based on what I experience but my neuro docs just shrug their shoulders. So I have no idea as I have to trust they are the experts.

To confuse things a little more every classic migraine with aura I've had over the past 4/5 years has occurred whilst I've been exercising/running/working out. And on top of this my EEG showed "unexplainable" abnormalities under hyperventilation... Figure that?!

So is there a link between all this? The exercise, the migraines, the increased intensity/increased damage of permanent visual aura after a classic migraine, it all suggests there is a link... But the neuro docs think not and discharge me lol!!

Am I scared to exercise due to fear of another migraine? Yes! Am I worried I could be ruining my own vision by risking another migraine? Yes! What did the neuro docs advise? Continue as normal!!

So, here I am today, in a living hell, with genuinely properly messed up peripheral vision and ocular pain liked you'd never imagine.. But apparently theres nothing wrong with me and Im advised by the experts to put up with it and get on with life.

Which is what brought me here to share my experience and listen to others who've unfortunately experienced similar issues to that of myself :)

Really keen to hear if anyone has any ideas for new meds to try or if anyone has ever managed to beat these darn permanent visual disturbances? Something tells me not?

Either way I hope my story at least serves to let others no they are absolutely not alone in their battle with this horrible debilitating affliction. Happy to talk to anyone and share further info of my experience to date.

BTurc
Regular Member


Date Joined Oct 2011
Total Posts : 102
   Posted 3/17/2015 6:58 PM (GMT -6)   
Question 1: Were you ever on any medications long term prior to the symptoms starting?

Question 2: Have you ever had a Bubble Study? This is an echocardiogram with bubble study for your heart and to check for a PFO (Patent Foramen Ovale). Evidence shows that a PFO (flap opening in your heart) can allow "dirty" blood to pass and get to the brain which sort of aggravates the brain and can lead to visual phenomena as you describe.
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