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First migraine one month ago, haven't felt right since

First let me says thanks in advance. Any help or suggestions are greatly appreciated. I am at my wits end.

THE MIGRAINE
4 days after returning from a beach vacation with my family, and one day after 4th of July, I had my first migraine. I'm a 37 year old male, soon to be 38. I was sitting at my desk at work doing an annual training module. I was sitting slump in my chair, because my headphones wouldn't quite reach. I had 2 cups of coffee that day and I drank little water. With no warning I got a visual disturbance, I couldn't see whole words in both eyes, the world looked sort of like a picasso painting. I went to the ER. While in the ER, I started having trouble finding words. The doctor pulled out a flip book and I was very slow to recognize the items and couldn't recognize the picture of a hammock. My right hand went numb, then the right side of my mouth. I thought I was having a stroke. They ran a CT, and while awaiting the results I got a terrible headache. It was about 1.5-2 hours from the start of the aura to the terrible headache. The CT was clear, the doctor deemed it a migraine. The gave me tordal, the headache subsided. He said follow up with neurology in 3 months. I thought that was the end of the story, but it was just the beginning.

MEDICAL HISTORY
Pretty unremarkable. From a neurological perspective, I've had 3 concussions: 1989, 1990, and 2004. Each one of those with migraine like symptoms. The same vision problem, terrible headache, but also with dizziness and vomiting. I also have essential tremors in my hands, very mild, that I've had since I was a child.

DOCTORS VISITS
I didn't feel right the next day, but I figured that was normal. But as the days past, I still felt off. I was having light sensitivity, trouble focusing on things at distance, most noticeably street signs. Neon colors look very bright to me. I had some mild dizziness, sort of like walking on a ship. The migraine occurred on a wednesday. The following monday after still not feeling well, I went to see my pcp. He does the quick neurological workup. He says it's headaches, prescribed me propranolol, because my BP was high that day, ONE TIME. I didn't take it. My BP is never high.

The following day I see neurology. Another neurological workup, similar symptoms, she says its probably headaches. Even though I haven't had a headache since, I take the diagnosis. She offers me a plethora of different medications, but says we can try magnesium first. Not wanting to take a maintenance drug I accept. She orders an MRI.

Wanting to stay on top of things and since my chief issue is with my vision, I go to the optometrist. Glaucoma reading normal, optic nerve looks good, very minor astigmatism. The prescription is so minor he advises me that I shouldn't use glasses.

The MRI is the following week I have the MRI, which makes me dizzy for a few hours and I feel that same dizziness the next day. I call neurology, they say see ENT. In the meantime, I see my pcp again, he runs some blood work for things that might cause odd symptoms, like thyroid, magnesium level, iron level, mono, and parvovirus. All those tests come back ok.

In the meantime, my MRI results come back normal. I see my PCP again, hoping to find some relief. Despite no symptoms to indicate infection, he says we can try a course of antibiotics. Despite the fact that I would never normally do that and he would never normally try that, its been over 2 weeks, I take them.

3 weeks in I have my ENT appointment, at this point I have been dizzy more often, not vertigo dizzy but sort of walking on boat. After a long conversation, he says it's probably migraine associated vertigo. Now it's been 3 weeks, I didn't have vertigo with the migraine, and I haven't had it since. I accept the diagnosis, and he schedules a VNG, which I haven't had yet. It would tell me whether the dizziness is ear or brain related.

Since that time, I have seen another PCP doctor twice, he said we could try a steroid, medrol dosepak, to see if it might be inflammation. I've scheduled another eye appointment, but with an opthamologist. And I have an appointment in the headache clinic next week.

Test Summary: CT w/wo contrast, MRI w/wo contrast, and C Spine series
Visit Summary: 1x neurology appointment (and 2 calls with the Dr.), 5x visits to PCP, 1x ENT, 1x optometrist, and 3x acupuncturist.

MY PROBLEM
The first problem is it's been over 5 weeks and I haven't felt normal, right or even ok for a day, not for a single day. The second problem is I'm not convinced this is a headache. The third problem is I don't know what is wrong. I feel like I waiting for the other shoe to drop, or that I missing my window to get whatever is wrong addressed before I get lasting damage. I have a journal I have been keeping to an extent, and I have my entire blood work history in a spreadsheet, if I could find someone who could help me.

SYMPTOMS

Constant
Light sensitivity
Trouble focusing on things at distance
Visual snow - most noticeable in a dim room, but always there
Mild to moderate neck pain that cracks frequently now and didn't before - I have my full range of motion

Frequent
Ear pressure
Dizziness - that feels like I'm on a ship
A feeling like my head is leaning forward
Tenderness at the base of my skull
Jaw Pressure
Temple Pressure
Queasy

Occasionally
Pressure in my sinus
Pressure behind my eyes - both
Pain in my eye - usually one or the other
I've just noticed a minor tinnitus. I have to cover my ears and strain to hear it. It gets louder when I clench my jaw.

ONCE
I've had one headache since the migraine and nowhere near as intense.

Keep in mind this all started with the migraine. I had none of these prior to, so it seems logical to me that it can only be one of 3 things: caused by the migraine, something underlying caused the migraine, or it's a coincidence.

Does this sound like migraines?

  1. Hi TJ22,

    Welcome to the Migraine.com discussion forum and sharing your detailed history with us - we're glad you're here!

    Yes, the symptoms you've describe can all be found in migraine disease. The thing about migraine disease is most people don't have a clear understanding how debilitating it can be. It's not just about a "headache," rather its a genetic neurological disease with a long list of symptoms that can linger for days. In fact a migraine attack typically has four phases; prodrome, aura, headache and postdrome. Let me share with you some information on migraine disease; https://migraine.com/living-migraine/patient-perspective-migraine-symptoms/ and https://migraine.com/blog/understanding-migraine-symptoms/.

    If you're not happy with your diagnosis, you may want to seek out the expertise of a "true" migraine/headache expert. These doctors are different than neurologists in that they are certified in headache medicine which is different than being certified in neurology. We have more information on this here; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    Let me know what you think,
    Nancy

    1. I’m currently going through this exactly. Auras, numbness in hands and mouth, and migraine. It’s currently been 4 weeks and I’m literally going crazy trying to find a way to knock this out of me. If you found a way to feel better please let me know

      1. Hi jontaylor770,

        I'm so sorry to hear you've been in extended pain. I would encourage you to seek out the help of your doctor to see how he can break this nasty migraine cycle. When pain lasts too long, it can increase our risk of status migrainous and stroke. Your doctor may try a steroid dose pack and/or iv fusion.

        Will you let me know how you are feeling?
        Nancy

        1. Thanks for your response Nancy,

          Currently, I’m not dealing with any pain from the migraine. Just suffering from the postdrome symptoms such as mental fog, sensitivity to light, and difficulty reading and concentrating. I’ve received an MRI on my brain and it came back clear. I just started taking magnesium and B2 and my neurologist just prescribed me a steroid pack that I started today. Any other recommendations? Thanks agin for your response

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