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

Hi there

I suffer with Chronic daily migraine, daily visual disturbance and chronic fatigue syndrome/M.E

Ive been unable to work and basically house bound for 2 years, things are extremely hard, everything in my life is hard to do.

Im here today to chat about my constant daily visual disturbance which is linked to my migraines, im trying to find anyone out there who is like me and has constant daily visual problems. My consultnat has said 'This is a rare accompaniment of migraine, visual symptoms are cortical in nature and reflect a visual processing dysfunction'.

My Consultant has described my vison as ‘my brain is not processing what im seeing’ and this all i know about my vision. Im trying desperately to find anyone who has vision problems all day everyday, this is not a normal aura, ive had vision issues constantly for 2 years now. I have been told its like vertigo vision.

My vision problems started at age 14, i had typical auras at 1st, lasting 10-30mins, brought on by lighting in shops, florescent, computers, and white walls.
Started as a blurry watery circle in visual field (classic normal aura), which spread, grew bigger within a few mins, and filled whole of vision, both eyes. This is how all vision issues started out when younger.

Over the past 2 years vision has changed from normal aura to as described below:

NOW: I have daily CONSTANT visual problems and have done for 2 years, every single day my vision is distorted.

Now Daily and constant visual problems, very hard to live with, stops me from doing everything, just as bad as the pain side of migraine. Its very difficult to describe, almost like everything is moving a mm or so, which leaves me feeling incredibly disorientated. Lasts all day, can be triggered for no reason at all, can just come on. I will wake up and a few mins later vision sets in and lasts all day long.

NOW - vision bad no matter what, with and without Migraine head pain, constant, daily for months


Triggers/difficult to do:

Lighting of any kind, natural, florescent light bulbs, dull lighting, all effect vision etc
Shop lighting
Computers
White walls/rooms
Travelling in a car
Being in the back of a car/small spaces
Being in a lift
Reading
Writing
Drawing
Talking
Concentrating
Eye contact
Looking down
Patterns
Candle light
Walking
Using mobile phone to text
People talking too close to my face/ pointing in my face/ close up movement
Find it hard to get on a escalator when vision bad
Difficult to think, take information in, feel slow
Feel like I’m in a day dream state, vision is like a day dream
Feel very disorientated, difficult to move, walk, go out, drive


Symptoms more capable when:
Outside, on a very sunny day, in bright sunny natural lighting
Seem to be better at night, in the dark, in the evening

I would be so grateful to hear from anyone who is going through this, im told by my neurolgist thsi is a very rare form of migriane so anyone out there who has this id love to hear what tabs help u have had etc

Thanks

Hi there Jojananxiety,

Thanks for posting, but what your decribing is a visiual aura also known as ocular migraine of which i know alot about.

What you describe having is what ive been experiencing since i was age 14, so for 10+ years I have suffered with this typical 'aura'. It started like yours is now, i would have episodes once a every few months, always triggured by lights, driving, lights in shopping places, computters etc.

As the years have gone on, the auras became stronger and longer with migraines after too, they used to last as you say anything from 10mins -30mins every few months. and then as ive got older few frequent.

But im now age 27, and i have daily constant migraines all day everyday my head does not stop being painful (chronic migraine), and alongside this i also suffer with this 'constant visual disturbace' and chronic fatigue syndrome.

What I now have is totally different to a normal aura/ocualr migriane, its now turned into a CONSTANT visual disturbance, all day everyday my vision is horrendouse. Its a tad like the aura in how it leaves me feeling, but different, i dont get the zig zag lines/watery lines like i used too. It now lasts from as soon as i wake up to when it gets dark, so hours. and is extremely disabling.

I have been unable to function, have any type of life for over 2 years. Im trying to find anyone out there who suffers with visual disturbace (like auras) which are constant, which they have all day everyday for years.

Please anyone out there like me, please get in touch. Who has this all day everyday,

Thankyou

steven1121

Hi there
Thanks for getting in touch. Feel free to tell me your story, as horrible it is we have this, its nice to know someone out there had the same ish thing and be able to chat to someone who gets me.

I am so glad I am not alone as I have similar problems as you. I will tell you more once I get on the computer as right now I am on my phone. Will be in touch soon!

Since I was 13 years old, I have had changes in my migraines that lead my doctors to change the type of migraine I was having. I am currently going through a daily visual disturbance- a new change in my migraine patterns. When the symptoms first started, my doctor immediately sent me to my optometrist to rule out retinal detachment- I had a gray veil.

Driving is difficult- this is when it most distressing. Lights make me crazy. I also am now sound-sensitive with no headache. I do not have pain everyday, but when it comes, it comes like a Mack truck. My doctor believes that my headaches and associated aura are complicated migraine and not ocular, as my symptoms are in both eyes.

I am currently taking topiramate. This has by far been the most effective prophylactic medication I have taken in 25 years. My visual disturbances are lessened by the meds, but we are still adjusting the dosage. Not sure if you have tried this.

hello, i am also a migraine sufferer for 30 yrs. hve ocular and migraines with auras. i get the light shows right before the migraine zigzags, triangles, squares, circles, all with dancing colors and dark spots. once the headache is passed my eyes absolutely hurt for days afterwards, they re very dabilitating. been to eye specialist, migraine secialist, have had MRI,MRA, cat scans, theres a test ive done it . taking amitripyline,propranolol,butalbital apap, works sometimes, it really sux to have these problems that noone understands but us who suffer from it.

Hi there,

I randomly came on this forum and post doing a search and thought I might have an answer for this aura. I have persistent migraine auras that are very diverse in nature so lots of different forms and distortions, and so I have come across lots of different names for these variations. My visual auras have been non-stop for decades but quite a bit more intense since my migraines have gone chronic so my research into them has been more intense trying to find people out there who get them as varied and distorted as I do. Anyway, I believe what you are getting is actually a phenomena that is often refereed to as 'Ghosting'. Here is a simulator that shows what it looks like although as you know in reality a lot more disorientatingwww.visionsimulations.com/vision-simulators/ghosting-simulator. This is actually one of my more rare auras, far more common when I am sleep deprived or at night for some reason... So 'trailers' are when you get this echo of motion after an object, like I move my hand and see seven hands move after it. And 'ghosting' is when I look around the room and see an echo of every darn object following right after everything... sometimes a small wee echo and sometimes a rather long one. So obviously this can be very disorientating... even more so if you are actually experiencing vertigo. darn near fall on my ass then. However clearly far more common and problematic in your case. I can't see it being a common aura. Not that I have heard of anyway. But I do know it is 'more' common with people with visual snow (a 'static vision' neurological problem with can occur with migraine or not and isn't an aura), migraine or not. Visual snow just seems to increase the chances of other visual auras and visual phenomena, which is where some of my diversity comes from (trailers, halos and more). However, like you, aside from the visual snow issue... when I had episodic migraines back in the day I had the classic scintillating scotoma aura to a T (not that I still don't get those, just not directly prior to a migraine... other triggers for those now)... and it can go quite bizarre when it goes into that persistent migraine aura business. I hope you find a preventative medication to help you out with this.

Dear My lovely, I have only just stumbled on this site and cannot believe I have actually found someone suffering the same visual daily 24/7 disturbance as me! I have had migraine for years but 8 years ago I opened my front door and the whole word looked and felt different it petrified me no-one understood and began to tell me it was anxiety ..... It was not ! That's not to say it doesn't CAUSE horrendous anxiety! I remained in this awful state for two years going back and forth to neurologists with no understanding or no help. During this time I still had painful migraines as well. After around two years it began to improve and I was on top of the world! To cut to the quick this condition now seems to come in blocks of 4months at a time, now I go a few months without it and bang it's back ! Exactly what you say is the same for me , bright sunny days give me some relief and the shower also helps my vision ... Is it the water in our eyes.?.. I don't know. I do feel that you are young and that your condition will improve but believe me I totally understand your despair as I am in yet another episode now it seemed to be clearing and then I hadgastric problems and its back, any ill health in any part of my body brings it back! The dizziness is constant, fluorescent lights are hell and a new symptom is ringing ears! I am about to see another neurologist at the National hospital Ill let you know if anything materialises. Please contact meif you want to. I so so understand what you are living with. I used to remain in the house afraid to go out with disorientation but I realise now that thatis the road to ruin and you have to force yourself to rejoin the world even if you feel horrendous. Eventually you can live in the world like it ....it's not easy .... But sometimes after doing this it seems to improve slightly. Also I wear shaded glasses all the time to tone down the strangeness ..dont ask me how it helps but it does a little.
I have 4 children so I have to face the world. But I absolutely hate hate this condition.

Take care
Hope to hear from you xxxx kaymarina

Hi Liztay, yes I understand your desperation! I am of a similar age to you and I have questioned whether its menopausal but my vision /balance issues started 8 years ago which seems am awful long time for menopausal symptoms to go on ..but who knows there could be a connection. There is no doubt that life is very very difficult with this condition. ..Can you describe what your vision is like?? Do you have pressure in your head and a feeling of being constantly off balance? I have the ringing vibrating ears 24/7 as well.

When this first began i will admit I couldn't cope at all in fact I had a nervous breakdown because I just couldn't accept that no-one could help me and I felt I absolutely couldn't live with the distortion in vision and the 24/7 dizziness. I tried anti depressants , all the migraine preventative medications .... Nothing helped! The anti-depressant made me feel 100% worse. In the end i came off all drugs and tried to accept this is how it is, you either live with it or you don't, but with 4 young children the latter was not an option for me ! Gradually I forced myself outside and tried to be part of the world again... Always feeling distorted and dizzy but I learnt not to fight it anymore. Gradually I got my vision back for a few months and the dizziness abated,.... It has continued to come and go for 8 years and I have continued to have ' ordinary' migraines every few weeks always lasting 4 days and being extremely painful.
I am in a episode again now and have been since June. I'm not denying that I panic when it first rears its ugly head again, but I tell myself that eventually it will go. Don't get me wrong I'm desperately searching for answers and Ive got an appointment at the NationalNeurology hospital coming up soon as a specialist there wants to see me as he has 4 other patients with this condition and apparently a drug he used on one was successful
And he wants me to try it.... But Im not sure, new drugs scare me but we'll see.

Honestly Liztay you are not alone and if I'd been told 10 years ago I'd have a condition like this or I'd EVER be able to live like this I'd run screaming to the hills. Please feel free to contact me. Migraines are so misunderstood they can reek havoc with your life ... They certainly are far far more than a headache ......if only !!!xx

Hi Liztay , yes I know what you mean about work. I teach but have been off since June because my vision and balance have been very bad, my vision is almost 3 d ! And I have to wear tinted glasses to cope with the strangeness I have it 24/7 when I'm in an episode and an episode lasts around 4 months..... Hellish! I also get the kaleidoscope visual auras but usually when I'm not in a four month episode! ...... They usually last about 35 mins and I have to lay down when I have one. It's all so strange. Anyway I'm going to try to get back to work next week but it won't be easy as I'm not in remission yet but I'm so embarrassed to be off this long. I had a bad four day pain migraine last week i took zomig but it doesn't work ... I wonder why nothing works for me? Anyway it's so good to speak to a fellow sufferer... (Sorry, I hate that you have to suffer at all! ) you are so right it's comforting not to be suffering alone. I'm here if you ever need support. Kaymarina xxxxx

Hi Leasha,

That is so sad for you and I understand your frustration as it completely rocks your world. Do not feel alone though as we all seem to suffer from a similar occurance but it is such a personel event that it manifests itself into different auras. I accept the auras though they frighten the hell out of me and I try to calm the panic as losing your vision is so scary but I am still learning to breathe through them and let my body relax.They seem to come in waves and I have been free from them for about 2 weeks again so just think I am doing well.
Side effects from drugs are common and everyone reacts differently but stay strong and you will learn to cope with whatever they bring.There are many drugs out there that you may need to work through. The support on this site is fantastic and gives you hope that you can lead a 'normal' life.
I have battled for 30 years and am doing the drugs rounds again and have found some relief ,though far from perfect. I manage to work 2 days a week with some adaptions by my employer to help me and can just about cope with that but it is learning your boundaries that will help you most.
Please post again if you feel you need support as you are not alone. Lots of love and best wishes liz x

Hi NurseAV,
You will soon learn you are not alone. Do you mind telling me how old you are as to be told at 19 it could be MS or tumour is very ignorant of the health profession and I hope this was not recently as tests are very good and though they cannot always tell you what or why it is happening they certainly can rule out MS or a tumour.
Are you on any medication as sometimes you need to try certain drugs again. For me 20 years ago some drugs made me feel so ill but in the last 2 years I have tried them again and pleased to say I get some relief.
The support on this site is wonderful and helps you to look at your illness in a different way. It is not easy but stay strong and you can take control much of the time even when you feel at your lowest. Most of us battle every day with this illness that very few really understand but it is surprising how strong you become speaking to others with similar conditions.
Take care
xx