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

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Dizzy 2
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Date Joined Jan 2017
Total Posts : 1
   Posted 1/14/2017 7:35 PM (GMT -6)   
Hi, I just read the first part. I didn't read all the follow ups. Don't even know if you're still checking in. My visuals started last spring. I had nausea, fatigue, light sensitivity, stiff neck, I was walking into doorways, and the world started moving. It's so hard to explain to people. Its not really vibrating but kind of heat waves on a hot day, and if I try to walk it looks like everything is coming at me supper fast. The first two episodes lasted two weeks. I was sick for every minuet of it. I woke up with motion sickness and visuals. The third one lasted 2 1/2 months. I am on the fourth one now and this is the 4th month and the visuals are still here. At least the nausea and fatigue is not here all the time. I don't understand why it wont just go away. I cant work, I can barely drive, being in a store is so disorienting. I am losing my life to this awful thing. Have you found anything to help? I am on 125mg of Topamax, I avoid all trigger food, avoid sunlight. No one on these forums ever has any useful information because the doctors don't know anything. I guess the human brain is just to complicated. Well, I just wanted you to know that I may be on my way to being stuck like this forever also. You are not alone!

Tinkermayhew
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Date Joined Jan 2017
Total Posts : 1
   Posted 1/30/2017 10:14 PM (GMT -6)   
OMG, I am so glad to have found this site. I have just recently been diagnosed with Silent Migraines. For the last year, I have been having instances where my vision suddenly goes hinky. Half of what I’m looking at is just gone. The left half of my field of vision is gone. There is just a void. The happens so randomly that I could not figure out what was wrong. Until recently I just had the vision loss. No pain or other symptoms. Just recently I moved to New Mexico from Texas. The altitude is significantly higher and the temperature is MUCH colder. Last week I had two episodes in one day. However, my symptoms changed. I still had no pain but in addition to the vision changes, I saw zig zag pulsing lights, my arms tingled and fingers stiffened and I was unable to speak. I was so weak I didn’t think I would make it home, I was at the Library at the time. I’ve been feeling so lousy since my move to New Mexico, I just thought the cold and altitude were kicking my rear. And my family, who has been in New Mexico for 25 years, was doubting anything was wrong. After my episode at the Library, I decided it was time to seek professional help and called a neurologist. After explaining my symptoms, they directed me to the emergency room as they thought I was having strokes. Luckily the MRI, Cats can, EEG, EKG, Carotid Artery and Heart Ultrasounds were negative. I never heard of a silent migraine until the ER doctor made the diagnosis. Like many of you, when I started to have the symptoms I often suffered from great anxiety. I was fearful of dying and always feel lousy. I think the anxiety is often worse than the migraine symptoms. I too am so tired of feeling lousy and am always dizzy, and just “not right”. It sucks. I have not yet determined my triggers nor have I been given any medication to treat the illness. I was just released from the hospital yesterday and see a doctor Wednesday to start working through the diagnoses and treatment plan. Let’s all hang in there and I hope you all feel better soon.

Michaela
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Date Joined Feb 2017
Total Posts : 1
   Posted 2/14/2017 2:53 PM (GMT -6)   
Hi, I was just procrastinating from studying smile when I found this thread, since I was curious about who else is experiencing something like this - everyone I know just thinks I`m making it up. Anyways... I think I can help some of you. I know what causes mine problems and I know people are underestimating this particular issue, and treat the symptoms rather than finding the cause. Ever since I was about 14, I`ve been having thoracic spine problems - not big, but it would just get very easily blocked, cause nerve tension (including eye nerve) etc... Well this not only started to give me migraines with aura once in a while, but also cause constant feeling of car sickness - slight headache, dizziness, fatigue, loss of appetite and so on, and cause vision problems as described above - feeling like everything except one point I`m directly looking at is behind a heat wave, slight aura-ish vision, troubles reading because the letters are kinda floating due to the lack of sharp vision...
So if you really wanna try anything and find the underlying cause, I suggest you find a chiropractor who can do a manual mobilisation like this - https://www.youtube.com/watch?v=F7yqE51ifv8. It certainly won`t hurt you and I swear by it. One foolish exercise with my physician and I`m good to go for a while smile.

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 2/15/2017 12:37 PM (GMT -6)   
I watched the video Michaela posted above. While I'm glad it works for you, and you are confident in the chiro who does this for you, this is basically just a form of traction that affects the upper vertebra...but with a yanking motion. This just doesn't seem safe to me. It would be easy to press forward against the neck instead of lifting upwards.

There is an inexpensive device that can be purchased to do this same thing much more safely and effectively at home, without paying for a chiro. It hangs over the top of a door, and is basically a ratchet mechanism with a chin strap that fits around the head. You pull on one end of a rope and gently apply more pressure lifting the chin strap -- hold for a few minutes, enough time for the discs to plump up, then release the ratchet.

I have one, and it is helpful. Over time, I've had to use it less and less.

Bruce

Barry C
New Member


Date Joined Jun 2017
Total Posts : 1
   Posted 6/7/2017 3:27 PM (GMT -6)   
So glad to have found this thread and reading through it has been informative.

I can't ever remember not being able to see floaters. It didn't take long to be able to ignore them. From 19yo to about 30yo I'd have intense migraines without auras two or three times a year. The only way to turn them off was an injection that knocked me out and the next day I'd be fine. And then all of a sudden they never happened anymore.

Eight years ago at work one day I had an episode of the visual auras. No headache or pain and it lasted about 20 minutes. I started having these once or twice a month and went to see an eye doctor who diagnosed it after an exam and Cat scan as ocular migraines with auras. She told me it was more of an annoyance than anything and to not drive when having one.

So for eight years this has been going on and I've learned to live with it. No big deal and certainly not as debilitating as some of you folks are dealing with. Last week, 300 miles from home at a gas station I suddenly got dizzy, I mean world spinning out of control dizzy and went down on the floor. After laying on the floor for a minute or two I managed to make it to a restroom where I sat until the spinning slowed but I had a monstrous headache and a pulsating, swirling aura across about a third of my visual field. I got directions to the nearest hospital and they gave me a shot of Torodol sp?? for pain and did a Cat scan. Cat scan and all other vitals were normal and they sent me on my way. I finished my day's work and drove home but the aura and a dull headache never went away. The day before yesterday it somewhat diminished to about 5% of my visual field and there it has remained. No headache just an aura.

The strange thing about this aura is it can be black and white or color and it changes every so often depending on what I've been looking at. While typing on this page it has become a black and white jumbled mess of letters, numbers and characters. Then if I look at something brightly colored it picks up shapes and colors of what I've seen. Very strange and disturbing.

I've picked up some of the treatment ideas you folks have discussed and will give one at a time a try to see if it helps. Thanks for sharing your experiences and good luck to all of you dealing with this mystery.

Mikeyfear
New Member


Date Joined Jul 2014
Total Posts : 5
   Posted 9/6/2017 10:00 AM (GMT -6)   
I was diagnosed with Chronic Migraine with aura in 2014. I Have been suffering since late 2013. In 2014 my migraine frequency was every 3 or so days for almost the entire year. On Dec 3rd of '14, the frequency of my migraines took a dramatic change for the better. Some months better then others. I must of only had about 15 migraines for all of 2015 (rough guestimate). 2016, around the same. I have come across this thread many times since 2014. And figured its about time i leave a comment, if i havnt already.

On the 24th of August 2017 i woke up out of bed with an incredible headache (not a migraine). The blood felt as if it was stagnated in a specific area on the top of my brain. The 25th i had an attack. The blindness aura, the shimmering lights, the scintillating scotoma. Since then i have been suffering multiple attacks a day. I went to the ER on the 31st because i lost the ability to speak and feared a stroke. The stroke assessment and the ct scan came back clear. Im really suffering bad and i fear that my neurological condition has progressed. I hope this isnt going to be the rest of my life. Its really bad and i am now living in complete and utter despair. I have been weighing the balances of life and death. Constantly praying for relief. I hope i get relief! In the name of Jesus i pray that each and every one of you find relief! And i ask for you to pray for me as well. Please god help.

Post Edited (Mikeyfear) : 9/7/2017 10:06:35 AM (GMT-6)


Blindluck
New Member


Date Joined Sep 2017
Total Posts : 5
   Posted 9/29/2017 5:12 PM (GMT -6)   
Hang in there, you gotta be strong.

I am also a new sufferer of this horrible affliction. As of December 23, 2016 I have had migraine with persistent aura every day 24/7 nonstop. I don't get headaches all the time, and when I do they're not that bad. Mine comes in the form of ghost vision in both eyes. With a little bit of blurry and foggy vision. I also get the floaters now too... especially when I look at the sky. But the ghost vision is the biggest problem...it is driving me crazy. It mostly happens with lights and things with strong contrast. At night is the worst. During the day, my eyes just feel "different" then one another....and they always feel tired.

I, like most of you, have had every test done....ekg, cat, MRI, 3dif eye drs, 2 reg drs, a neurologist, a neuro-ophthalmologist...and some others I probably don't remember. Everything came back totally normal. Perfectly healthy. Oh btw I'm a 40yr old male. So my neuro-ophthalmologist was the one that diagnosed me and started me on the drug topiramate(topamax). Treats seizures and migraines, I have had some positive results with it. I will say it has not fixed my vision, but it did help it, I could drive at night again! For the first month it gave me some relief. But it seems to be wearing of. The doctor told me it could take 2 to 3 months for the drug to take full effect so I'm trying to give it time. And I am still on a low dose of it so I am still praying that it works...or at least helps.

If not, he said there are a couple other drugs out there that we can try but if they do not work...there isn't anything that they can do for me. I know, pretty disheartening. But stay positive and keep trying new things. There has to be an answer out there. I'm trying to get to the root of my migraines and where they come from. I'm thinking a combination light sensitivity and a bad neck from poor posture. I don't know but I'm trying everything.

Post Edited (Blindluck) : 9/29/2017 5:16:57 PM (GMT-6)


Nay91
New Member


Date Joined Sep 2017
Total Posts : 7
   Posted 10/4/2017 4:49 PM (GMT -6)   
I was suffering migraines for a long time, some day I met Dr Arroyo in Houston TX. Now I'm free, ? haven't migraines anymore, he developed the definite solution to reverse migraines, for good, without drugs or surgery. I want that every body be free of migraines, check the info http://www.fox26houston.com/good-day/morning-news/migraines-no-more-program-putting-an-end-to-pain

Blindluck
New Member


Date Joined Sep 2017
Total Posts : 5
   Posted 10/4/2017 6:13 PM (GMT -6)   
Did you just have migraines or did you have migraines with persistent aura?

Td2290
New Member


Date Joined Oct 2017
Total Posts : 2
   Posted 10/14/2017 7:42 PM (GMT -6)   
I've been suffering from the same thing as most of you. Things started at age 13. First migraine was only visual. Saw a hug blind spot lasting 20 mins then side vision got really distorted and it just faded away. Got these often after and got diagnosed with optical migraine. When I was 15 I had different types f visual disturbance lasting 4 weeks. Random blind spot blurring all day every day then it resolved. When I was 19 again constant visual disturbance lasting 3 months and cleared up. When I was 23 it happened again lasting 6 months. Now fast forward I am now 27 I was driving home from work late at night on 7/2/17 and I noticed the lines on the side of the road had spots missing in them. Never thought much of it but the next day I was having these issues again. Blind spots randomly blurring vision weak vision. To this day every day I have this. But new stuff I've never had started. I started feeling like the muscles around my eyes were weak. I wake up some days with no control of my eyes. Both eyes rolling around uncontrollably for several mins. So weird, and it causes crazy anxiety. I've had a normal MRI AND SPINAL TAP and seen 3 eye docs and 4 neurologist. I live in Maine so I'm thinking of trying Boston med. My current neurologist wants to diagnose me with chronic ocular migraine but they are so different than my typical migraine which I still get bout once a month. Any thoughts???

Blindluck
New Member


Date Joined Sep 2017
Total Posts : 5
   Posted 10/16/2017 8:20 AM (GMT -6)   
Well I know your typical migraine and optical migraines or persistent aura migraines like I have are totally different. My neuro told me that there are dozens of different types of migraines that can affect all of the senses(sight, smell, touch, hearing, taste). Some come with a bad headache(migraine) and some not at all.
I've had aura(ghost vision) for also 1year now and I hardly ever get the headaches with it. Just messed up vision day in and day out.

I'm no dr but it sounds like u have optical migraines/aura migraines which suck by themselves but idk about the eyes rolling around, I've read a lot about migraines and that is a new one for me anyways...
Have you ever heard of BPPV? It's when the crystals in your inner ear get stuck in the wrong place and they can make your eyes move back and forth involuntary when you lay down...there is a simple test you can try at home to see if it is. You might need a partner to help you but YouTube search bppv test and it'll show you what to do.(tilting of the head while laying down w head off bed kinda) gotta watch the vids.
Hope it helps, let me know how it goes.

UPDATE: on my condition, had to come off topamax after 2/3months due to kidney stones.(which are a horrible side effect to most migraine meds). Pretty bummed because they where helping.

Td2290
New Member


Date Joined Oct 2017
Total Posts : 2
   Posted 10/20/2017 1:35 PM (GMT -6)   
Thanks for the reply. I'll be checking into bppv with my neurologist . maybe I need an ear doctor. I also found a condition called vertical heterophia. This fits my symptoms pretty well. It when there is a very slight misalignment with the eyes. So one eye is slightly higher then the other. It can cause blurry vision distorted vision and some double vision. It also puts horrible strain on the eye muscles and causes pain and eye strain. Eye strain can cause temporary blind spots in the vision. Crazy because they eyes rolling around in my case is usually early in the morning if I'm not getting good sleep or if I've done too much physical activity the day before. I just can't except the diagnoses of optical migraines because I've had them sense I was 13 so for 15 years and they are way different than what I am experiencing now also I get my classic optical migraine sometimes on top of this other issue. I would suggest everybody look into vertical heterophia as well. I'm trying to find an eye Dr that can test for it but it's a rare type of test needed and not many docs are trained in this. Plus I live in Maine and were dumb in the medical field. Good luck to everybody on here I feel your pain.

Buster1
Regular Member


Date Joined Apr 2015
Total Posts : 36
   Posted 10/24/2017 2:53 AM (GMT -6)   
I have ocular migranes at times as well. I'm 45 and have finally figured out what seems to be my trigger...my swinging and off hormones, specifically Testosterone.

When my levels are stable, no ocular migraines. When my levels are changing (due to increase or decreased dosages from my endocrinologist and T therapy I'm on) I seem to have more ocular migraines.

Have you checked all your hormone levels?

Best wishes.

Blindluck
New Member


Date Joined Sep 2017
Total Posts : 5
   Posted 10/24/2017 6:28 AM (GMT -6)   
I haven’t, but I have been thinking about it. I did just turn 40 so I’m sure my T levels aren’t where they are supposed to be. I just know once you start T therapy you are pretty much on it for the rest of your life so I have been trying to hold off....maybe it is time.

Paul van der Hoeven
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/3/2017 5:10 AM (GMT -6)   
Hello there,
First off sorry for my bad english.

Never thought that I would read about people having (or seeing) these things like me.
Awesome to see the love and support of every one telling his/her story and helping each other.

I'm 18 years old and can't remember when the optical migraine's began.
When I was 13 my mother showed me a picture and I asked: Is this how you see everything? Because I thought the seeing disortion I see was normal. Seeing weird spots, snowflakes of colors changing and stripes. It's hard to describe this thing but it can be compared to when you stand up quickly and see these black/color changing aura's or by closing you'r eyes hard for a minute and opening them. also my I came to the conclusion my eyes coudn't see good in depth. I read alot of people saying certain surroundings and feelings changed the disortion, but what I see is mostly the same. So my mom brought me to a doctor to check everything, but the doctor himself and the eye doctor didn't know what it was. So I went to the hospital.
The hospital said it was migraine and gave me medicine. From my 13-17 I took about 20 different medicine assuming it was Migraine and epilepsy which were so bad for me. 2-3 Days a week I was unable to do anything because of these medicine but nothing worked. 3 Months ago I went to an Academic Hospital that told me I had to stop all the medicine and try without any medication.(This does not mean I suggest this for you) It sure helped and I am now able to go to school and work. But the vision problems never dissapeard and make the things I want to do in life hard.
The doctors at the Academic Hospital in the Netherlands (Leiden) created a special program to see what is causing this vision problems and maybe telling me where it comes from. For the next 6 months I have to go to these doctors and hoping they can find something that is causing this or just telling me what this is.

I will be posting more when I'm in and after the program hoping it gives some results.

If you have any questions or tips I'm looking forward reading them.

Take care,
Paul

Blindluck
New Member


Date Joined Sep 2017
Total Posts : 5
   Posted 11/3/2017 8:11 AM (GMT -6)   
Please do. I’d be interested to hear what they come up with. I’ve been dealing with it for almost a year now and would love to hear some good news. Good luck and I hope it goes well!

TheOracle
New Member


Date Joined Dec 2017
Total Posts : 2
   Posted 12/2/2017 6:42 PM (GMT -6)   
I, too, have constant visual aura. For me, it's been going on for 5 years when I was 42 (48 now) and I'm female. I have scintillating scotoma which, when unmedicated, can last from 30 minutes to up to a couple hours as they sometimes end and then, start up again. When I have three, my body starts to jerk uncontrollably. I also have varying degrees of night blindness, black "floaters" that randomly appear and disappear all over my right visual field, distortion, ghosting and trailers, double vision, rays coming from light sources, quick bursts of color in the center of my vision called phosphenes, wavy/shaky vision, and visual snow. I also have had issues with seeing what looks like shapeless blobs (so far only white or black) moving in my peripheral vision, which can be pretty startling. I very rarely have any pain with these beyond discomfort at the base of my skull.

I've had 2 brain MRIs (with and without contrast), an EEG, an in-hospital video EEG, 2 cervical x-rays, a cervical MRI, a cervical MRA and a brain MRA. The last three were completed the other night and I don't have the results back on those yet. Everything else was normal except for the cervical x-rays which showed mulilevel disc degeneration with retrolistheses and foraminal narrowing. We don't know if that's the source of the issue. The neurologists did note that I was experiencing auras during the video eeg as they had me on film reacting to visual disturbances but there was no seizure activity associated with them. A neurophthalmologist found that I have Adies in both pupils (basically, my pupils react slowly or not at all to light sometimes).

I'm being evaluated by a physical therapist who specializes in post-concussion patients as the auras began after a bad fall down the stairs. Like another poster in this thread, I was found to have neuro accommodations as if I am without sight. Basically, when trying to focus on an object with objects behind, my eyes will jump to the objects behind immediately and lose focus. This apparently creates a conflict in visual processing in my head and is why I'm the super klutz walking into everything and tripping over nothing. She also found convergence issues (my eyes don't work together) to 2 ft out, which is the source of my near double vision. I have visual exercises to try to repair these issues and we don't know if this is stimulating the auras or a result of them. My PT also asked me about pupil issues

Other issues that have formed or are associated with this are erythromelalgia and livedo reticularis (vascualar disturbances) in my palms and arms that worsen before an episode of scintillating scotoma. I have problems with thermoregulation--I either don't sweat, sweat too much, or am icy cold. My PT has noted balance and equilibrium problems (I fall a lot). I also experience dizziness, nausea, light headed feelings, and constant ringing in the ears. I also have issues with confusion, language, and spells where I'm "gone" that don't appear to be seizure.

I was initially placed on propanolol and 750 mg of depakote to combat this. The auras improved except for the black flecks, night vision issues and double vision for about a year or so and then, the rest returned. My neuro retired and the new neuro placed me on 1000 mg of depakote. This wasn't working until it did. Then I realized that the pills had changed (couldn't read the bottle) and I had been actually taking 2000 mg of depakote. I was immediately given a depakote level and was found to be in therapeutic level at 80 and not overdosing. My neuro had me taper down to 1500 mg and this stopped the scintillating scotoma episodes and other auras except for the double vision and walking into things. I was taken off of this dosing for the video EEG and when it was done, I suggested we try leaving me off to see what happened as I didn't experience any scintillating scotomas during my stay, which are the larger issue. My neuro declined but let me try 750 mg again as we both agree that 1500 mg of depakote is dangerous to be on permanently (I've lost half of my hair, gained 20 lbs, and it damages the liver). The scintillating scotoma returned, lasting an hour and a half with repeated events. I'm currently on 750 mg depakote, 400 mg B2, and 400 mg magnesium oxide. This isn't working for me either and after having an episode of scintillating scotoma in my primary care doctor's office the other day, she wants my neuro to initiate adding topamax. So, soon, I'll be trying both topomax and 750 mg of depakote as we're trying to find the safest way to control this.

I was placed on a short term high dose prednisone, which did have some interesting effects after a few days. My night blindness, black spots, and double vision lifted; however, my episodes of scintillating scotoma increased back up to 1-2 every other day. I ended up on the prednisone after PT exercises for my neck aggravated cervical radiculopathy at C8 so that could've been the trigger for increased SS.

Hang in there, everybody. I know how hard this is all too well but at least we've found each other.

Post Edited (TheOracle) : 12/2/2017 7:13:38 PM (GMT-7)


TheOracle
New Member


Date Joined Dec 2017
Total Posts : 2
   Posted 12/2/2017 7:56 PM (GMT -6)   
Buster1 said...
I have ocular migranes at times as well. I'm 45 and have finally figured out what seems to be my trigger...my swinging and off hormones, specifically Testosterone.

When my levels are stable, no ocular migraines. When my levels are changing (due to increase or decreased dosages from my endocrinologist and T therapy I'm on) I seem to have more ocular migraines.

Have you checked all your hormone levels?

Best wishes.


No hormone tests run here beyond thyroid tests that come back perfectly normal (like smack dab in the middle). I do have a long, long history of elevated prolactin (PRL) associated with Lupus (which I have). I suspect the reason why they haven't tested this is because I have a hormonal IUD implanted due to being on depakote, which is known for birth defects, and it would alter my test results. The auras didn't change before or after the implant so docs and I don't think it's hormone related between that and the normal thyroid tests.

Xondu
New Member


Date Joined Mar 2018
Total Posts : 1
   Posted 3/20/2018 4:19 PM (GMT -6)   
I just started having something like this... Does anyone know what to do? I've started having to wear sunglasses in my own house sad

Richard123
New Member


Date Joined Apr 2018
Total Posts : 1
   Posted 4/11/2018 9:39 AM (GMT -6)   
Hi there I’ve had a ten percent blind spot shimmering with white flashes , sparkles and I see this with my eyes closed this is 24/7 , I had a tramic injury to my eye from football , my retina was scarred and damaged this has disabled my life at the beginning from when it happened but as time progressed it has got easier my brain does ignore it time to time and don’t see it when I’m busy at work and relaxing in the house watching tv , the worst for me is non natural lighting and dusk as I see white flashes go past in my vision my overall vision is fine , I even ask the eye doctor to remove my eye so I could live with the one I’m being seen by the best docs in London , with laser being used to treat my condition, I do know what your going though, I have my up and down days but I make sure I get plenty of rest and keep my self active , positive mental attitude, we wasn’t born perfect I have three kids a wife and no good to them depressed everyday , the treatment I’m having is to kill the mis firing cells in my eye with one treatment slightly successfully I’m the first to have this done , but I’m to have more laser this is not my brain causing this but my retina plz feel free to message me . There are worse off people out there stay strong
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