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Looking to find anyone who has had a similar experience. What was your diagnosis?!

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    Looking to find anyone who has had a similar experience. What was your diagnosis?!

    Hey everyone, this is going to be a bit of a long one- but I would love some feedback.

    I’m a 27 year old female.

    I first started experiencing photophobic migraines when I was 10 years old. They were few and far between at first, but after a couple of years the frequency picked up, until there came a time when I started having seriously painful migraines every single day within an hour of waking up. This was around the age of 12, close to 13.
    And I’m not exaggerating when I say every single day. It was unbearable. I started taking Excederin migraine extra strength once Tylenol stopped working. I remember in 2011 when there was a huge recall for Excederin, that was one of the worst things to happen for me during that time.

    (It’s important for me to note here, that the only other two people in my entire family to suffer from migraines were my grandmothers sister and their father, and they both died of ruptured brain aneurysms.)

    After a couple of years of complaining daily to my father about the headaches I was experiencing, he finally took me to have an MRI without contrast done when I was 14- but it showed nothing.

    After 2 more years of complaining we went to a neurologist when I was 16, who prescribed me Topomax, which is an anti seizure medication. He explained that chronic migraineurs and people who have epilepsy have similar electrical activity in their brains, and that Topomax was designed to help limit that activity.

    As soon as I started taking the Topomax I was relieved for the first time in 4 years of daily migraines. I didn’t have one single headache for 8 entire months. That was until the ‘event’.

    This happened when I was 16, in April of 2013.

    I woke up one morning for school, I felt fine. I rolled over, hit my alarm clock, and I probably laid there for a few seconds as I usually do when I first wake up.
    But as soon as I stood up, BAM! I was hit with what felt like a knife being plunged right into the top left side of my head. Right on the ridge where the top of your head meets the side, diagonal to my eye. It knocked me back down on my bed. It was like nothing I had ever experienced before.

    I went to school anyways, the pain increased throughout the day. But I figured I’d go to sleep when I got home and when I woke up it would be gone. Sleep was usually the best cure for my migraines.
    So I went to sleep early that day, slept through the night, and when I woke up the pain was still there, but it had migrated from the front toward the middle of my brain.
    I got up, went to school again. I’m sure by now I had told my dad about what I was experiencing, but he really wasn’t the most caring or attentive parent.
    Same as the day before, I got home and went to sleep hoping it would dissipate. I remember laying there on my right side, my head aching, and feeling like I could actually feel fluid whooshing around on the left side of mg head as I laid there.

    I woke up the next day, and the pain had migrated again, now it was at the back of my head, and I was experiencing neck pain. I had never had pain in the back of my head or my neck. I could feel that something was really not right, but my dad sent me to school anyways.

    By noon the pain was so severe that I went to
    the nurses office to call my dad. By the grace of god one of my friends who lived in my neighborhood was also there and her mom was coming to get her. They called my dad at work and asked if her mom could take me with them, to which he agreed. Her mom just took me back to their house so that I wouldn’t be home alone.

    After resting on their couch for awhile I had to get up to use the restroom, I stood up and said that I was seeing doubles, and my friends mom looked at me and said that the left side of my face was drooping. I couldn’t even walk in a straight line to the bathroom, and I was slurring my words when I spoke. When I looked in the mirror sure enough the left side of my face was sagging. My eye, my cheek, and the left side of my mouth.

    She called my dad, but he didn’t rush home to take me to the hospital. He didn’t show up until 7pm, hours after her mom called. They woke me up and I noticed I wasn’t seeing doubles anymore, but my head and neck were still aching.

    When I got to the hospital I explained what happened 2 days prior, and I explained that I felt as though I had been stabbed in my brain. The nurse just laughed at me and asked if if I had ever been stabbed before, and then my dad laughed as well. No one took me seriously. No tests were done. They gave me an IV for pain and a sedative and sent me home.

    My dad never took me back to the neurologist to be checked out, and he stopped having my topomax refilled.

    I didn’t experience any headaches for awhile after that. A few here and there, but not daily.
    They started coming back when I was 23, but they were different. More localized to specifically the left side of my head in the area I felt the stabbing pain at 16, accompanied by pain in and behind my left eye.

    I started noticing small things here and there. Facial spasms, decline in vision, loss of smell, brain fog, chronic fatigue, emotional dysregulation, and my ability to spell even simple words has decreased. I won many spelling bee’s when I was younger, so having a hard time with spelling is new to me. I’ve started spelling words how they sound. Balance and coordination issues, slurred speech (I’m often asked to repeat what i say because people can’t understand me when I talk)
    I had one visual hallucination during a headache when I was 24. It hadn’t happened before or since.
    I also experience what I call “brain cramps”, twinges of cramp like pain that are very brief, lasting 10-15 seconds.

    I recently went to the eye doctor for an exam for the first time since 2012, and I was shocked when she said she suspected glaucoma in my left eye and brought me back in a month later for glaucoma testing, and sure enough, I have glaucoma in my left eye. I’m still shocked by that because I’m only 27 and no one in my family has glaucoma.
    I feel like it is directly related to what I am experiencing neurologically, since my new form of headache is always left sided and it affects my left eye. Since my diagnosis I’ve also realized that I’m starting to lose my color vision in my left eye. When looking out of only my left eye vs. my right eye, colors are more dull, but when I look out of only my right eye, everything is normal and vibrant. Which I guess could just be part of the glaucoma.

    Oh and this might be completely unrelated, but I still feel it to be neurologically caused- but when I was 19 I rode my bike to work one day, it was a 10 minute right, and it wasn’t out of the ordinary for me to bike ride sometimes because I enjoyed it. But half way through my ride I started to feel incredibly dehydrated, I was extremely thirsty and super nauseous, and my head was pounding. I grabbed a cup and filled it with water and sat down and started drinking as soon as I got there. My manager was standing right in front of me talking, but I couldn’t hear anything he was saying. He was blurry, and even though he was standing directly in front of me looking down over me, he looked further away then he actually was.
    The restaurant was also extremely busy, but I couldn’t hear anything at all. I heard everything when I first got there, but as soon as I ran over and grabbed my water and sat down, my vision tunneled and everything went silent, except I could hear what sounded like white noise. This total loss of hearing lasted under a minute. When I came to, I heard my manager repeatedly asking me if I was okay, and my wave of nausea worsened, I got up and started running toward the bathroom but I puked right as I got to the door. I think maybe I might have had a heat stroke (it was summer in Florida) but I can’t explain that total temporary deafness, and I can’t find anything about that when I research it. It was one of the strangest experiences I’ve ever had..


    Welcome, billnyeseyes!

    You surely had a very miserable childhood with so much pain.

    The experience when you were 19 might have been heat stroke, or there might have been some problem with your ears. Have you ever consulted an otolaryngologist about that episode?

    Sometimes MS can involve sudden hearing-loss episodes. You mention having an MRI when you were 14 but I wonder if you've been seen by a neurologist recently? There are other conditions that can cause hearing loss too. If you haven't had your hearing checked since that episode when you were 19, it would be a good idea to have that done.

    I hope you're being treated for the glaucoma?

    These are just my thoughts, and I'm not trained in neurology. I'm just someone who has had MS for many decades but I have tried to keep a weather-eye on developments in MS research. Maybe others will come along and reply with some insight into your situation. I hope that life will be improving for you.

    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.


      Hi, billyeseyes.

      I am not a doctor.
      My thoughts are:
      Your MRI is old.
      There are some risks doing it with contrast.
      Maybe, the main question for a neurologist could be:
      Now, is there only the pain, in and near the eye?
      And no more the other symptoms?
      Is the optic nerve ok?

      Best wishes


        Piergino Pedrocco has made an important point--that the MRI is old. You don't mention having any MRIs since then.

        If that 13-year-old MRI is the only one you have on record, neurologists probably wouldn't even be interested in seeing it. In fact, I've had neurologists tell me that a 7-year-old MRI was too old to be of any value.

        The technology has changed, and you've changed. I hope that your current doctor will be ordering a new MRI for you.

        I don't think you mention how you're doing nowadays. How have things been in the last few months, or over the last year?
        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.


          Hi Agate,

          yes I’m hoping to have another MRI done soon, I’m seeing a neurologist next month (October).
          I’ve been having some weird symptoms (all listed above) since the return of my headaches at age 23. I’ve been keeping track of them, but was also worried that I might just be overreacting- until I was diagnosed with glaucoma in my left eye. A couple of weeks after that diagnosis I made the connection that it could be caused by something neurologically wrong with my brain because of the episode I had when I was 16, which affected the left side, and also most of my headaches are left sided.

          I will look into getting checked for MS, there are some symptom similarities, but only a few.

          Like I said, there are neurological issues from my grandmas side of the family. She had Cerebral vision impairment in one eye, and her sister and father both had brain aneurysms.

          I’m curious what answers my future MRI will uncover, if any. I just want to know what exactly is happening to me.

          That’s most of the reason I came here, to find anyone who has had any similar experiences, or maybe just bounce around ideas of what could be happening.

          I just want to feel like a 27 year old. I generally don’t feel good most of the time. No matter how good my diet is, or if I take my vitamins. I’ve been running on empty for the last 4 years.
          A lot of my symptoms go hand in hand with front temporal lobe damage.


            Here's an idea I've been keeping in mind as I've had to deal with a neurological disorder--that sleep seems to be so very important that I should make every effort to get all the sleep I need. It looks as if this may be true of other neurological problems too. I'm sure it helps that you're keeping to a good diet and watching the vitamins as well. I've noticed that I feel 100% better on days when I've had adequate sleep, and when I'm short on sleep I'm next to useless.
            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.