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Possible IIH? Very nervous

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matt45001
matt45001

Hi.  I posted this in the neurological forum but think this may be a better place for it.  Please see below.  Thanks!

Around 2 weeks ago, I was feeling totally fine and all of a sudden while walking, I experienced severe dizziness and a feeling of rocking back and forth.  I couldn’t stand up and had to lie down.  I went to urgent care who just did a basic blood test and gave me meclizine and said to see an ENT.

I saw an ENT and they referred me to a balance clinic, couldn’t find anything wrong with my ear but said it’s possible for inner ear.

Fast forward to three days ago and the dizziness and feeling of rocking is still ongoing everyday.  Three days ago I experienced weakness in my left side of the head, left arm, and right leg.  It could have been anxiety since I suffer from severe anxiety, so I didn’t go to the ER once it resolved.

The following day, I saw an optometrist because I had noticed some blurry vision and misreading words often.  They said my optic nerve seemed swollen and sent me to an emergency opthomologist.  The opthomologist resident also ran tests that showed slight swelling but were inconclusive in terms of it being just optic nerve drusen.  They also sent me for MRI with and without contrast which came back normal except for saying that my optic nerve sheath was prominent in the imaging.

Today I’m still feeling weak and offbalance.  My eyes also seem somewhat red on the sides.  Should I be concerned?  The opthomologist resident didn’t seem too concerned or knew what it was.  Would the MRI have shown if I had swelling or increased pressure in the brain?  I hate feeling this way but maybe someone knows what I might have.  Thank you.  I also have a pressure like sensation in the head most of the time, if that helps.

0 likes, 6 replies

6 Replies

  • melissa_35548
    melissa_35548 matt45001

    Posted

    Matt45001, 

    I have been going through the exact same thing since January. I have the save symptoms as you, and even the same test results where the doctors are unsure if it’s drusen or true optic nerve swelling, and my MRI and CT scans are normal. I don’t know if MRIs show swelling but it would show if there were any blockages causing a buildup of fluid. You may want to ask for a lumbar puncture to measure your spinal fluid pressure so you can finally get a diagnosis. In my case, my lumbar puncture was also “inconclusive” because my pressure was 18 and I was told normal is 5-15 and high is 20-25. I felt better than usual on the day of my LP with no headache or dizziness -  probably because I hadn’t eaten due to the food and fluid restrictions prior to the LP and I’ve noticed sodium makes me much worse. Are you overweight? That could be another diagnostic clue for you. While not everyone with IIH is overweight, my doctors claim they’ve never seen anyone with IIH who wasn’t overweight. Good luck, and hopefully someone more knowledgeable about this will respond to you soon. 

    • matt45001
      matt45001 melissa_35548

      Posted

      Thank you so much for the response.  I’m glad to know someone knows what I’m going through.  I’m pretty overweight, about 50-60 pounds overweight and have always been overweight.  I also suffer from severe anxiety which is just making this whole thing a lot worse (I don’t know if the symptoms are from anxiety, or if the symptoms are real and anxiety makes it worse).  I’ve been shivering a lot as well.  My eye seems to look a bit grey on the side as opposed to white like normal.

      Did you feel completely off balance 24/7?  My head just always seems heavy and everything feels off.  But even my field of vision tests came back pretty normal and all of my other eye exams were fine except for the optic nerve part.

      I’m starting to really take losing weight seriously and trying to eat foods without much sodium.  I haven’t been diagnosed with IIH, but I see weight loss can be a huge help.

  • melissa_35548
    melissa_35548 matt45001

    Posted

    Matt45001, 

    Yes, I feel off balance most of the time, and my head is often heavy. I feel like things are shifting in my head, like I can feel my brain moving (I know that sounds bizarre) and my vision is very blurry and sometimes double. I’m also 50-60 pounds overweight, but I have been since my pregnancy a few years ago and I didn’t have these symptoms until recently. The neurologist I’m seeing (and looking to replace) has diagnosed me with vestibular migraines although I have no history of migraines and have had every ear test on earth and they all come back normal. I’m very frustrated and my anxiety is increasing because I don’t know what I’d happening to me. I think when we’re anxious, we become hypersensitive to everything going on in our bodies and end up more anxious, thinking we are dying, or having a heart attack, or brain tumor, and then our anxiety creates more symptoms and we can’t distinguish what came from the anxiety and what is a serious concern. Anxiety over health problems is a viscuous cycle.  I try to keep my mind occupied so I’m not always focusing on my symptoms. I’ve found walking and other physical activity help distract me as well. 

  • windy52035
    windy52035 matt45001

    Posted

    TRy the spinal tap to check your pressure. Also, suggest to a neurologist to do an MRV. It’s like an mri, but it shows up the veins in your brain. They can see if any are collapsed. That’s what mine was...good luck
  • matt45001
    matt45001

    Posted

    I’m now stumped.  No longer having massive headaches and mri came back fine for the eye, but now I’m having severe abdominal bloating and I think I may have ruptured my esophagus or trachea.  I had a chest X-ray done and a chest and abdomen cat scan which all came back normal.  Would there still be a chance I had a perforated trachea?  I’m also noticing burning sensations all over my body.  Is this just anxiety?
  • caitlin_98459
    caitlin_98459 matt45001

    Posted

    I don't think it sounds like IIH you have, I have IIH, I got diagnosed at 17 it felt like a gradual headache for the first 3 days then it turned into hell, got the the point I couldn't bare to be in the light or even listen to anyone speaking, as like you I was refered into the hospital and given ct scans and then a lumbar puncture my opening pressure was 64 so mine was quite high! I don't think they would let you out the hospital if they thought it was IIH x

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