Hey everyone, I’m currently 15 weeks pregnant I started getting auras about a year ago. The past two months I’ve had a huge increase and at this point I’m getting them every 2-3 days, did anyone else experience a big spike in them during pregnancy? Did anyone successfully manage to get them under control? I’m so lost right now this is scaring me I’m hoping it’s just hormones but yeah :(
Thanks everyone 🌸
15 yo female with history of hypermobile Ehlers Danlos syndrome (diagnosed by genetics and rheumatology), dysautonomia (diagnosed by cardio), asthma, autism, adhd, depression, insomnia, and femoroacetbular impingement.
Meds: symbicort, albuterol, Zoloft, seroquel (for insomnia at night), Zyrtec, adderall xr, melatonin, and Flonase.
Mother has hEDS, dysautonomia, mast cell activation syndrome, and lupus.
Possible important history:
March 24th pneumonia vaccine for immune response study. (When she gets a virus she sick for a month or two.)
March 30: said she felt like she was getting sick. Took a nap. (She doesn’t nap. We have to drug her to sleep even 8 hours.)
April 5 she was sleeping 20ish hours a day and napping when awake.
April 8th ped said it wasn’t mono (labs) and that she was probably recovering from a virus plus the hip impingement pain causing exhaustion. Try to keep her up to regain that energy.
Limited bed to 12 hrs. When doing school work (we homeschool) she would do an assignment, rest, do an assignment, take a nap, do an assignment, and so on.
The week of the 20th we went on vacation to sea world San Antonio. She navigated the park in a wheelchair due to her hip. She road every rollercoaster as much as possible (30+ times in total).
May 4th around 5 or 6 pm she came to me and said her eyes started burning and then she couldn’t see the sides. She described the loss of peripheral vision as frosted glass. She could see light but not identify what she was seeing. Went to the ER. They gave her toradol and did a CT scan. Said no MRI bc it wasn’t important enough to call in the tech. An hour after toradol she developed a headache. They gave her compazine and discharged her with worsening headache and worsening vision.
May 5 saw ped and her optometrist. Diagnosed With bitemporal hemianopsia and requested MRI. 40% loss on left eye 25% vision loss on right eye.
May 6th ped requested an ophthalmologist. Saw them. They agreed with optometrist. Get the MRI.
May 7th ate dinner and when to bed. This was the LAST meal she eaten.
May 8th sedated MRI. Before she woke up they called us back and said they are transferring her to a larger facility. She has had two small strokes. One in the cerebellum.
Admitted via ER to larger facility. Her starting weight was 166 pounds. The hospital ophthalmologist agreed the eyes are pristine in terms of structure. Vision was 20/20 in both eyes before all of this and it is now consistently 40/20 (I think that’s the order the numbers go in).
May 9th they did a sedated MRI/MRA/MRV of the head and neck with contrast. She came out well and was alert and oriented. That evening her blood pressure bottomed out down into the 70’s/30’s. She was minimally responsive. They had a 1 L bolus of NS and got her in the 90’s/50’s after an hour or two. (Her blood pressure has remained an issue through the entire admission.)
May 9th/10th we were able to get her to drink some fluids and eat two small kid packages of gold fish and one package of 6 pb and cracker package. That was the last food she ate and pretty much the last time she drank anything or any value. At this point she was nauseous but still able to keep food down. By the evening of the 10th she was unable to keep food or drinks down.
The headache continued to get worse with no treatments helping. (Toradol, steroid, compazine mix and magnesium) The nausea continued to get worse with no treatment helping. (Zofran makes zero difference. They added reglan with a “1-2 point drop” she started using the 1-10 pain scale for nausea. They refused phenergran due to sedation.) Her vision also continued to get worse. By this time all she does is sleep.
They has been giving fluids off and on bc they want her to be thirsty.
She has not eaten any food until today, may 17th (it was more of a passive agressive f you doc). She started with some water and vomited it up. then she added jello that she vomited up. Then Italian ice that she vomited up. She decided to add color (per her) so she drank Gatorade that she vomited up and then…she wanted chunks so she ate some of a muffin that she vomited up. It all came up. Just to prove to the doctors she can’t keep food down.
The doctors claim they have done everything they can and have ruled out stroke, glioma, and MS. They had done 5 days of 1g of solu-medrol. She has had bouts of becoming unresponsive with no memory. For example today her blood pressure was 85/53 wirh a heart rate of 97. 15 min later she said she felt dizzy and funny then became unresponsive. Her blood sugar was 72. Sternal rubs, pinching, and compressing the nail bed go zero response. (These episodes can last 20-45 min.) they did a post episode eeg and found no post ictial phase. They said her brain was shutting down due to the 9/10 pain and 9/10 nausea with vomiting and dry heaving.
She hasn’t eaten or drank anything of value since the 10th. She hasn’t peed in 34 hours. She is going through an IV every 24 hours even when not in use. It’s like her body is rejecting it. Once the steroids were started the vision stopped progressing.
Yesterday they started Emend fo nausea but it has been of no help.
The attending stated yesterday, “I’ve done all I can think of. At this point we are looking at her body being confused due to stress and anxiety. If you go home and get her in the sun and her environment she will start eating and drinking.” (This is why she decided to eat and drink today and vomit it up. To prove she can eat. She just can’t keep it down.) She can keep 1-2 small sips down every 20-30 min. Any more frequent and she starts vomiting/dry heaving.
Her LP is normal. (I don’t know the pressures. But the labs are clear.) An MrI of the spine is clear. Her vi D is 18. All other labs done have either been unremarkable or are still out as they had to be sent out.
They are currently saying all of her issues (vision, nausea, vomiting, migraine, exhaustion, dizziness and weakness) are not related to the brain lesions so it has to be psych.
The attending stated she doesn’t treat a teenager not eating/drinking until 2-3 weeks. They are refusing any kind of supplemental nutrition (NG tube, NJ tube, TPN) until then. As of this morning her weight is at 150.
The doctor is discharging her tomorrow as “there is no medical reason to keep her since this is psych related.” We asked what we are supposed to do if she doesn’t eat or drink when we get home. They said to bring her back. Meanwhile I was always told if you haven’t peed in 24 hours to go to the ER an if you haven’t been able to keep food or drinks down for a week to go to the ER. They are literally discharging her with things we should be taking her to the hospital for.
I will answer any questions you have.
In the past year I’ve been having reoccurring vision loss in one eye that would disappear before experiencing painful headaches, eye pain, and vomiting.
I’ve visited my family doctor about this, but i received no diagnosis and was told to take Tylenol. I’m not sure of this is a big deal but the fact it’s happening repeatedly is concerning me. i Searched the internet and it says it might be an ocular migraine, and I wanted to ask here to get opinions
what usually happens is that a dark splotch would appear in my vision, really similar to when you stare at a light too long. it’ll usually last 10 minutes Then after 20 ish minutes I’d get a really bad headache And a sharp pain behind my left eye specifically. I’ll usually sleep until it goes away, occasionally waking up and throwing up.
I can’t help but go into such a panic attack when I experience a visual aura. For a year it has actually ruined my daily life and caused me great anxiety and depression, I enjoy nothing anymore. I constantly scan patterned rugs, walls, zoom in on plain surfaces to see if I can see a shimmer. I also have floaters so they constantly freak me out and I mistake them a lot for the starts of one. I get such an elevated heart rate and just absolute sheer panic sets in. I know I need to calm down. I have had all normal brain MRIs, eye exams, heart tests, blood work. But when that aura starts everything goes out the window. I just can’t handle it. Did anyone else go through this and overcome it ? Was the scanning for visual disturbances an obsession? I’m not even me anymore. I’m so sad, I miss me. Any help would be greatly appreciated or words of advice 😞
Hello, I’m 22 years old. My migraine aura attacks started about a year ago. Since then, I’ve been experiencing them very regularly, around 3 times every month. I don’t usually get headaches during the attacks, only visual aura symptoms, and they always follow the same pattern. I saw a neurologist, and my MRI and EEG results came back normal. My doctor asked me to keep notes about the attacks, so I’ve been tracking them regularly, but despite my notes, I still can’t identify a clear trigger.
In addition, I often experience pain in the back of my neck. My headaches are usually located around the back of my head, especially on the left side of my neck/occipital area. These pains don’t happen at the same time as my aura attacks, but I’m wondering if a neck-related issue could somehow be triggering my aura episodes.
I’m also wondering if hormonal changes or menstrual cycles could be contributing to these attacks. I really want to identify the trigger and find a proper treatment or way to manage them better.
I don’t know if having attacks this regularly and frequently is considered dangerous. Over time, I got somewhat used to them and can manage them when they start, but emotionally this situation has been exhausting me. Even if I can get through the attacks physically, I’m struggling with the psychological stress and anxiety that come with them.
On a hot day in 2013, I got my first ocular migraine after sprinting to work from the subway. I was sitting at my desk when patches of my vision started flickering and I couldn't make sense of words on my screen. An eye doctor found nothing wrong, and sure enough it faded on its own after a few hours.
After that, they'd come back a few times a year, almost always after exercise — thankfully no headaches, just vision loss. In the worst cases I also lost the ability to speak and understand what people were saying to me. Super scary stuff, but it always resolved on its own.
Over the years I tried everything: hydrating more, electrolytes, better sleep, monitoring heart rate, eating more carbs. I saw my doctor, then two neurologists. All said it was migraines, nothing to be done. Eventually I just cut back on exercise, which made me feel worse over time.
This year I decided to try ice hockey — something I loved as a kid and gave up in high school. It was incredible! Until the migraines started coming after every single session, sometimes twice a week. I was really worried I'd have to stop.
Then my partner sent me for a massage. The therapist immediately flagged how tight my upper back, shoulders, and neck were, and recommended I stretch and roll those muscles regularly. A few days later I came home from hockey with a migraine starting — and noticed my neck was particularly tight. I started gently stretching: pulling my head toward each shoulder, shoulder rolls, slow head circles.
The migraine stopped. Completely. Within 15 minutes my vision was back. I was shocked!
Since then I've been stretching my neck daily, with extra attention before hockey. After 5-6 sessions that used to guarantee a migraine, I've had zero. ZERO!
I'm sure this won't work for everyone, but the risk is nil and it might just work for you.
Good luck out there!
Today during my work I was chillin absolutely fine literally all day… and very randomly I went like numb almost all over and completely lost my vision for about a minute… it was like just yk black all of a sudden or something of that sort it all slowly started disappearing just everything slowly transitioned into gray shadow type things, I got a really bad headache… that was about it but the headache I got from this happening is still happening about 20 mins later… does anyone know what this may be
Hey everyone, I’m at such a loss. I went for another quick eye tests the other week all was fine again I had an mri in January and that was okay too. (I have them yearly for something else there was a very milks change however neuros aren’t worried or don’t think that’s what’s causing the auras. I started getting the auras about a year ago they eventually plateaued to about one a month.
However this past 2 months I’ve had quite an increase in my auras but I am also 14 weeks pregnant so I’m wondering if that’s what’s causing the spike. Did anyone else experience this during pregnancy? I truly am so lost on what causes mine and I’m over the constant anxiety. I don’t know who to turn to or what to do.
This is my second pregnancy. Never got them in my first but I never experienced them back then either.
Hello everybody!
Before I explain what happened I just want to say that I have a few medical appointments lined up. I have health anxiety so please bear with me.
So, this has happened a few times over the last few years. It starts with a blurry spot in my vision, which then gets bigger and bigger, sort of turns into a big, blurry line that flashes a little. I am still able to see but doing things like texting is a bit of a challenge. After a while the blurry vision stops and I get a headache. Today, the vision thing happened twice and lasted over 30 minutes and the headache was more severe. I'm sure my anxiety made it worse, I was quite scared. It's taking me all day to recover, I felt dizzy, nauseated and exhausted during and after.
The non-emergency service I called advised me to see an eye doctor, which I booked for tomorrow. My GP is sadly kinda useless, and has dismissed my fear of ischemic events without looking into it.
So I just wanted to know if this is an ocular/aura migraine and get some reassurance/advice.
Thank you in advance. Happy to provide more details
Hey everyone who else occasionally experiences this? It is so very strange you literally dream your having one like example your dream your walking down the street having an AURA and then you literally wake up having one?! I’ve had it happen a hand full of times but it is so weird!! Or yeah just waking up during the night with one
These things drive me nuts still no idea what exactly causes mine but I’ve had a spike of them lately I believe due to my pregnancy. What I would do to be able to pin point the cause!
Just a little rant and curiosity about who gets them this way also
It's been 7 months and I have not had a single ocular migraine! I'm almost starting to forget how they looked and how annoying they were. Here's the breakdown of my acupuncture routine:
Oct-Dec: Weekly acupuncture appointments (covered by insurance til the end of the year which is why we initially did weekly) - no ocular migraines during this time
Jan-April: Monthly acupuncture appointments (not covered by insurance which is why I switched to monthly) - no ocular migraines during this time
May: Still no ocular migraines since October so we started on a 3-month schedule to see if that still helps. If I still don't have an ocular migraine after the 3 months, then I am going to get acupuncture on an as needed basis (if the ocular migraines come back).
So glad I have a success story to share and recommend acupuncture to anyone dealing with ocular migraines! I think my Chi just needed to be reset.
What were your neurologist or doctors recommendations for taking magnesium and B2/roboflavin? Did they suggest taking it together? Did they suggest splitting it up B2 in the morning magnesium at night? How many milligrams? What worked better for you and what didn’t? I know this doesn’t work for everybody, but I’m willing to try anything at this point supplement wise . Just wanting to compare it to what my Nuero said.
Hey guys, I’m wondering if anyone who suffers from HM has found any connection with their liver. I’ve had relatively mild hemiplegic migraines along with regular aura migraines for over half of my life and am sick of medications, bandaid treatments, etc. I’m sure I’m not alone here.
Last weekend I had what doctors think was either a hemiplegic migraine or a TIA. It was very severe and I’m still dealing with the effects and it’s leading me down a figure-out-the-root-cause route which I know is complex. BUT, has anyone here found they have elevated liver enzymes/any issues with their liver or sensitivities and also suffer from severe migraines? Or perhaps you spend/spent a lot of life in a particularly environmentally toxic environment (i.e. second hand smoke in the home, etc.) Again, I know it’s not a one-size-fits-all obviously but I’m polling to see if perhaps there’s something there?
Thanks in advance for your help!
I’ve had a nonstop migraine every single day for about 6 months now, and it started right around when I was heavy in the gym. I’ve been to multiple doctors, gotten mri’s, and seen eye doctors none of them have been able to help me. I’ve come here for answers hopefully. My symptoms consist of blurred vision, my face gets really warm, tired 24/7, brain fog, and pain. The only things I’ve notice that help are caffeine mixed with midol they don’t work separately, this combo only works for a couple hours and then goes right back to unbearable. Also somewhat intense physical activity helps and doing nothing makes it worse. Some things I’ve noticed that worsens my migraine are sunlight and laying down/ sleeping. Every time I wake up from sleepings or taking a nap is when it is at its worst and I’m talking like 5x worse.
I've suffered from frequent retinal migraines for over 2 decades. Haven't gone a week without a migraine in that time. Had a retinal detachment in March requiring surgery. In the month following scleral buckle surgery I've had 0 migraines—the longest I've ever gone without a migraine since I started having them. I have no idea how or why it happened but I'm crossing my fingers it's a forever side effect. I have never felt this kind of relief. Really the best silver lining of the worst experience of my life.
My oura ring is pretty accurate for sleep, flagging when I’m sick, telling me off after I’ve drunk too much alcohol. Anyway, yesterday I got a ‘major signs’ alert from the symptoms (though said no biometric stood out) radar but felt fine. Was freaking out I was going to get ill. This morning I was struck down with an aura migraine where I get a big blind spot and then feel wiped for the rest of the day (I get these occasionally maybe 2-3 times a year). I think it was flagging the ‘prodrome’ phase. I’m seriously impressed that it picked that up. Have any other aura migraine sufferers had anything similar before an attack?