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    Need answer please

    I have a question that I need answers to. I get this "event" often. I'll try to describe it and tell you more. I know it's starting because I get a sign. the sign is that I fee a beat or pulse in my right ear. Then my vision starts to get "wavy" (can't explain this) Then at the same time my left arm starts to feel heavy, tingly, throbby. This lasts about 1 hour every single t ime. It's debilitating cause I cant focus clearly.

    I'm a teacher and thankfully on summer vacation right now. But it has happened while I'm with the kids. I can hide it and keep going and no one would know. So, my MS dr says it paradoxysmal symptoms (nerve cell hitting scar tissue) so she put me on Tegretol. I started with 100 mg 2x day. The
    tegretol worked for about 2 weeks then they started again. So she upped the med. this keeps ;happeningg. Works for awhile, then stops. I'm now up to 850 mg a day.

    Three weeks ago I had a 72 hour EEG at home. It was normal (no seizure activity) Which means it's probably what she said. She wanted me to see a seizure specialist so i did. I am going for the in hospital Veeg on Thursday. I'm sure it will come up normal too.

    Well, my question is : if it's not seizures, then what is it?? Has anyone experienced anyting like this? I need to get this under control. BTW.. last night it happened 4am, 7am and 10 am. Please let me know if anyone has had anything like this? I can't be the only one in the entire world with these symptoms. (( TIA

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
    April

    #2
    Hi April,
    Pulsatile sensations in your ear can be caused by vascular issues. You should have it investigated further. A CTA of head and neck would show any blockages or issues with the blood vessels in this area. Can be something very minor but important to check it out.
    Good luck.

    Comment


      #3
      Has your neuro considered a form of migraine?

      Comment


        #4
        April, what you're describing sounds very typical of a form of migraine.

        Anything that "pulses" is highly related to vascular issues, which is part of what a migraine is, and the waviness in your vision is very typical of a migraine aura. Tingling, or even outright weakness, in a limb that occurs along with the pulsing sensations and waviness in vision are also associated with migraine, although the limb effectss are less common.

        The fact that you get these events often is typical of the regularity of migraines. The duration of about an hour each time is also typical of a migraine event. Visual auras alone often are shorter -- about 20 to 30 minutes -- but the episodes can be longer when complicated with more widespread body issues such as limb weakness.

        You could be having seizures, but seizures aren't usually associated with pulsing sensations -- which are vascular instead of electrical. Seizures don't usually have the regularity of lasting about an hour each time. And your EEG was already negative.

        You could be having transient ischemic attacks, but they tend to be more like fade-outs, without the pulsatile sensations and without waviness of vision.

        With even a basic understanding of how migraine works, the explanation of paroxysmal symptoms doesn't fit. Paroxysmal symptoms could explain the arm weakness but not the pulsing sensations and vision waviness. And a paroxysmal symptom of arm weakness wouldn't explain why your thinking is affected. The chemical and oxygen-deprivation effects of a migraine would explain the brain events.

        Tegretol is used as a treatment for migraine prevention, so that could explain why you've had some relief from it. But it doesn't work for everyone's migraine, which could explain why it isn't working perfectly well for you. And if you aren't having seizures, it would be expected that Tegretol wouldn't be effective for a condition you aren't having.

        Looking at your situation logically, paroxysmal symptoms moves to the bottom of the list. It makes sense for you to be worked up for seizures, but it sounds like you should also be worked up for transient ischemic attacks also.

        But on top of the list is migraine. I hope you can get a referral to a good migraine specialist.

        Comment


          #5
          wow

          Thank you for all the info.. I don't have headaches! Can I have migraines without headaches? I had an mra of the head and neck as well as an mri of the brain. All came out fine. My thinking isn't affected. I can have a conversation w/o anyone knowing I'm having one. I'm going to look up migraines now.. Thankyou
          April

          Comment


            #6
            Originally posted by aprilmitt View Post
            I don't have headaches! Can I have migraines without headaches?
            Yes. "Migraine" isn't the same thing as "headache." Migraine refers to a chemical/vascular/neurological phenomenon that doesn't necessarily involve head pain.

            "Silent" migraines are only silent of headache. They aren't silent of other, sometimes very significant symptoms. Based on your symptoms, migraine has to be on your list of possibilities.

            Comment


              #7
              An MRI will not look at the vasculature of the brain. I had many, many MRIs over the years. Then in 2011 I had an MRA as well as an MRI which showed an incidental finding of an occlusion in a major artery in my brain as well as an aneurysm. Never knew I had that. It was ordered because I was having a bad relapse and the ER doc wanted to make sure I didn't have something else besides just MS going on.
              To see if you have any problem in the cerebral blood vessels you need either an MRA or a CTA. They are the same as MRI and CT scan but focus on the blood vessels. You can have migraines without headaches but could also have a blockage or narrowing in a blood vessel. As other people have mentioned your symptoms could be from TIAs, migraines, or something else. Best to find out.

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