Confusion is a word we have invented for an order which is not understood.
Henry Miller

   I have never been so confused in my life than right now. Whatever disorder I have, all possibilities for them are confusing, under-recognized or misunderstood.

   Here are the facts I know to be true about my illness:

1. I have Familial Hemiplegic Migraines, diagnosed as Severe migraines around 1987 when I was a child.

2. My father had migraines as a child and essentially grew out of them by college age.

2. I have now and always have had migraine with aura.

3. As a child, the aura presented itself in the forms of visual disturbances, numbness in hands, arms, legs, and mouth, hyperventilation, vomiting, disorientation, slurred speech, confused thoughts, and pounding headaches.

4. At age 10, I got glasses for near-sightedness

5. My typical Migraine “attacks” would proceed like this: visual disturbances not allowing me to see someone or something as a whole, but rather in an altered state, followed by numbness in a hand (usually the right side) feeling heavy and tingly to the touch- sometimes fingers curling inward to the palm, then when I could feel the hand and arm again, it might spread to the other arm, or legs, but most often up the neck into the mouth and tongue making it difficult to speak. When it became difficult to speak, it was also difficult to think clearly as if I knew what I was trying to say, but the words weren’t making sense. After the numbness would leave, then the headache pain would set in for a short time up to a day (sometimes 3 days in extreme cases). The next day would usually be the time when I would feel drained as I imagine a hangover would be and I would be afraid of getting what I would call “aftershocks” or smaller occurrences of the attack (which would occasionally occur)

   So those are the things that I know to be true…everything else has been a mystery…

I am now in my early 30s and suddenly every day has been an onslaught of unexplained symptoms. Research and support are very important to the individual who has chronic illness with seemingly phantom symptoms. It is all too easy to feel like you are alone, a freak  of nature, that no one understands what you are going through, that doctors can’t help you, or that you can’t share your experiences with people because you might sound crazy and others will say that “It’s all in your head”. Sometimes I wish I could touch a person and they could automatically feel what I feel and see what I see, just for a few minutes to better understand. I find trying to describe what I am experiencing visually is the hardest part of all. 

   The constant quest for answers and inability of doctors to help is what leads people with chronic illness to researching their own symptoms. This can be both a blessing and a curse. As they say, “Knowledge is power”. Every time I search the net or in books to find my symptoms, I keep hoping I will have a moment where I can shout, “Eureka! That’s it! That explains everything and I am not going crazy!” Sometimes, I do find things here and there that make me think I am at least on the right track.  The downside is that one can find too many things that seem similar to the experiences he or she is having and (like me) become completely confused about which direction to pursue.

   So, here is a list of possible conditions I could have (keeping in mind that migraines can have comorbidities which are other illnesses linked to the migraines):

1. Depersonalization

2. Visual Snow

3. Malabsorption

4. Silent Migraines

5. Persistent Positive Visual Phenomena

6. Intracranial Hypertension

7. Peristent Aura Without Infarction

Those are just the ones I have found out about through comparing my symptoms with others and doing my research.

   Where do I go from here? Track my symptoms and possible triggers as much as possible. Then try to see some specialists. I am currently looking into seeing a neurologist, neuro-opthalmologist, or naturopath. If one doesn’t have the answers, I might need to try them one at a time until I find someone who does!



Confusion is a …


4 responses »

    • I hope And pray we find answers soon. Do you have tinnitus w/ your visual snow? I had no idea they were linked until I saw something today. I never have darkness or complete quiet! Can’t remember the last time I had either….together hopefully we can find answers in our community (hmers)! Good luck hun!

      • nope, no Tinnitus. I often feel that my ears are plugged and I get pressure/ache at the base of my skull from ear to ear. I am wondering though if that could be from sleeping with ear plugs every night. I feel like I am so super sensitive to everything!

  1. I understand what you say about others not understanding what it feels like! I wouldn’t wish a migraine on anyone, but it would be nice for other non-migrainers to be more understanding sometimes.

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