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New to this all, and could use some help.

Over the last 3-4 years I have been having what I assume are ocular migraines, or migraine with aura. I have not seen a doctor yet, I know that I probably need to do that. Last night I had one, and then a following this afternoon. I’m mainly wondering if anyone has similar symptoms, and if you have any tips to help. My (assumed) migraines usually follow a pattern: 1.) Blurriness toward the center of my vision field, making it difficult or impossible to read. 2.) A line of prisms or kaleidescopish vision that starts small in the center, gradually expanding to the outer vision, then finally dissipating after 30 minutes or so. 3.) Sometimes a small headache, nausea, and even diarrhea... basically feels like I have the flu or a hangover.
I know that no one can diagnose here, but I'm basically wondering if this is seemingly concurrent with other symptoms of migraine, and more importantly any tips or tricks to help out! I am a pilot and spend a lot of time staring at screens, so I've been wondering about some good blue light blocking glasses?
Thank you to everyone for any assistance!
Note: My mom had the same type of symptoms around my age but said it went away after a few years. I know there is a large roll of genetics in migraine, so that seems to jive.

  1. Hi ,

    Welcome!! Thank you for reaching out and sharing your story with us.

    As you mentioned, we can't diagnose you, however having said that some of the things you've described could be migraine related. And yes, migraine is thought to be a genetic, neurobiological disease. Migraine with aura (often referred to as ocular migraine) is experience by 25-30% of people living with migraine disease. It's important to get an accurate diagnosis which will allow us to receive the correct treatment and learn all we can about our particular type of headache disease. I would encourage you to reach out to your doctor as soon as possible.

    The thing is episodic migraine (14 or fewer attacks a month) can transform into chronic migraine (15 or more attacks a month) fairly quickly if not treated appropriately, and no one wants to be chronic!!

    Tips and tricks for migraine management include; staying hydrated, keeping a regular sleep schedule, not skipping meals (eating on a regular schedule) and avoiding the triggers we can. Getting regular exercise and reducing stress are also beneficial.

    One of the best ways to do this is to keep a detailed migraine diary for a few months. Let me share our information on this here;

    I'm sure others will be along to share their experiences with you. Will you keep me posted on how you are doing? Nancy Harris Bonk, Patient Advocate/Moderator

    1. Hi, Nancy. Thank you so much for the kind reply. I appreciate the tips and tricks, and will definitely see a doctor when I get home from work next week. I will totally look into the migraine diary, that sounds like a great way to help get a handle on things. I also ordered those blue light blocking glasses in an attempt to hope that helps me a bit.
      After my second attack in 12 hours yesterday, I felt absolutely awful for the rest of the day. I was improved a good deal today, but still had some nausea etc.
      I will absolutely keep you all updated, and again appreciate all of the help and kindness.



    2. Hi ,

      John - I'm sorry to hear about your recent attack - so frustrating! It's not uncommon to feel awful after the headache phase of an attack, called postdrome, which can last for up to 48 hours. This phase may leave us feeling exhausted, moody, "hung over" have trouble finding words and a number of other symptoms. This too shall pass is a common phrase in my mind!

      I forgot to mention there are glasses specifically designed for people with migraine disease who are light sensitive. I have an outdoor pair from TheraSpecs I love. They also may indoor glasses people are very pleased with. I'd love to know how the blue blocking glasses work for you.

      Have a great weekend and I look forward to your next update!
      Nancy Harris Bonk, Patient Advocate/Moderator

  2. if you can find a neurologist that specializes in headaches… can be especially helpful.

    My main tip is I wear sunglasses pretty much all waking hours esp in flare periods. I have various shade levels with sunglasses bc they sometimes create issues seeing clearly however, my migraine neurologist strongly suggested prescription sunglasses. I tried to save money by getting transition lenses but they don’t get dark enough and I often need sunglasses INSIDE my own apartment. I have chronic daily migraines (manifests ocular) and complicated by jaw dystonia and cervicaulgia (from herniated discs/spinal stenosis). Getting a MRI was key for me which neuro ordered as part or assessment of my occasional turned chronic daily migraines. They are mostly controlled with the CGRP injection and abortive. Anyways, sunglasses and I will put topical analgesic very lightly/thinly ON EYELID or as close as possible!!! It helps the stabbing behind the eyeball!!! I apply light pressure on closed eyelid too bx while it’s a little painful, it somehow helps counter some of the severity of the eyeball stabbing! I don’t get auras but I intervene as soon as I realize something is up. Rest, dark room.. have blinds shut but also have a tapestry over window. I eat lighter like BRAT diet or other mild stuff bx all senses so amplified for me! Massage on neck very helpful if you can get it!! Domt take excedrin migraine especially if frequent bx I didn’t know and turns out ultimately led to my getting rebound and transitioning to chronic migraines!! Not cool!!!! Hope some of these tips help but getting evaluated is necessary ASAP. It’s not uncommon to have multiple migraine types etc. Take care

    1. ty for the info about migraine specific shades. I will have to look into that. My best friend has 24/7/365 daily migraines at various functional to non-functional but it never ever goes. She wears contacts but she has multiple sets of sunglasses as she wears them all waking hours. When I look into these sunglasses, I will definitely pass info to her!!! I got some ridiculously expensive sunglasses for FREE (valued at $80) by a company called Optic Nerve. They are so unimpressive knowing the cost and it’s hard to explain them bc they are quite transparent. I like them bx I can see clearly but still shade especially inside places. The odd thing which is why they are special is on the person wearing view, they have a transition effect thsts not obvious from outside but they go darker depending on how lit a location is. Ppl are often surprised when they try rhem. I love the name of the brand lol. I was at a diabetes conference health fair and a charity club involved with helping uninsured get eye exams etc had sunglasses for free. I picked those cause they had a cool shape but they turned out to be my top favorite! Anyways I’m all very ‘talkative” 2day! Sorry so long and boring lol

    2. Don't apologize for having something to say! That's exactly what the site is here for. 😀 We love it! It's great that you found a pair of shades that you really like, and everything is better when it's free. 😉 Thanks for sharing. -Melissa, team

  3. I was thinking more about tips and had more to add so here I am again! Ha!!

    I also wanted to comment on probable genetic connection you seem to have. My neurologist abd her daughter both get migraines but my neuro says hers improved a lot after menopause. My mom had occasional but severe migraines for a number of years but also stopped in her menopause. She gets them still but extremely rare like 1x year if that! Mine started in late teens but I already had pre existing autoimmune arthritis diseases thus structural issues (i.e., congenital spinal stenosis, TMJ/dystonia and my juvenile RA impact on jaw, etc) so sorta just accepted as inevitable. In university they came more frequently… geeee wonder why lol. About 5 years ago, they went to chronic daily (had average of 25/30 migraine days). With the various meds I’m on for my autoimmune diseases and the migraines, I now get 0-4 monthly.

    ANYWAYS, thought of a few other things that help me most with migraine attacks. Love ice packs but I’m over so much prep.. I do have a small HEPA filter in my room that pretty much runs 24/7. It helps me with allergies but seems to help calm migraine. Maybe placebo lol. I live in San Diego so the following might not be useful but I have a multi option tower fan and on feeling potential trigger and also in summer, I use my fan anytime I’m in my bedroom. Mt mom has TBI and noticed cool temperature has a positive effect on brain. I don’t like being cold so I cover well but fan is soothing and seems to help much like Ice does. I use a/c if it’s humid hot out. I applied for medical baseline discount through utilities and included increased electricity for A/C, fan, HEPPA, because there are necessary tools that we use to help debilitating migraines!!

    I’m a little out to jury still on the following.. weighted blankets. I unintentionally discovered pressure on my body is soothing. Had a huge u-shape body pillow abs happened to have it on me during a migraine as I was trying to position myself and found I felt so relaxed. I tried a real weighted blanket and I was unsure. Don’t like feeling held down!! Also, maybe bc joints bad etc but moving positions in bed with weighted blanket on you is EXERCISING!!! Hahaha. I found having blanket on top half of my body helpful to pain and anxiety!!

    Hope some tips help here …

    1. ,
      Thank you for your kind words! We love people who share here!! Thank you for being so open with our community - it makes us feel less alone knowing others struggle with similar issues.

      There is a genetic component to migraine disease. We often see many family members with varying degrees of it. As far as menopause and migraine go, we do have some numbers on this. It's interesting many general neurologists and GP's tell their patients after menopause migraine will "disappear". Unfortunately that's not always the case. I've spoke with many women in their 60's, 70's and even 80's who still deal with migraine. When women go through natural menopause about 2/3 see improvement in attack frequency and severity, and 1/3 see worsening of symptoms. The opposite seems to be true when women go through surgical menopause.

      I've heard from many who enjoy the comfort of weighted blankets, my son sure did. On the other hand not so much for me! I do enjoy a cool room!

      I hope today is a good day and look forward to hearing from you soon!
      Nancy Harris Bonk, Patient Advocate/Moderator

    2. @flyfreelizzie thanks for sharing your tips! I'm sure they will be helpful to someone. Warmly, Cheryl team

  4. Thank you. I Should clarify. My neuro said her migraines were less intense after menopause. But I know many don’t as well. I’m 42 and mine progressed! Sadistic statists!!!

    1. ,

      Definitively sad stats! Wouldn't it be nice to have a cure in our lifetime!!
      Nancy Harris Bonk, Patient Advocate/Moderator

    2. I've heard from several women that after menopause their migraines were less intense. Mine calmed down after my last child at age 32. I'm sorry yours don't fit that statistic. Maybe yours will improve as time goes on. I've heard you can grow out of your migraines, but I don't know for sure! Warmly, Cheryl team

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