So why do you need a service dog anyway?: A bit about Acephalgic migraine

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Migraine awareness month is June, but I figured I’d get things rolling and talk about my chronic migraine condition.

A few months ago I finally got a straight-up diagnosis for my neurological problems. I want to take this opportunity to say a few words about Acephalgic migraine or “Silent Migraine”.

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When the average person pictures a migraine, the first thing that comes to mind is pain. It actually is true in most cases. Migraines can be incredibly painful and disabling. What many people don’t know is that migraines come with a variety of other symptoms besides the head pain. Every time a person has a migraine, they typically go through 4 stages:

  1. Prodrone: Prodrone is the migraine’s overture. It is a variety of symptoms that warn that a migraine is coming. A person in the prodrone stage of a migraine will feel irritable and/or confused, will throw up or have diarrhea or both, and they’ll start to become light-sensitive.
  2. Aura: Aura can happen before a person feels the head-pain or while the pain is happening. Aura can actually be quite intense and debilitating. A person will start to exhibit neurological symptoms such as speech disturbances, problems walking or navigating, and increased sensitivity to light and sound. The person may fall, they may feel numbness or weakness in their arms and legs, and they may reach an increased state of confusion. Perhaps, the most notable characteristic of the aura state are visual symptoms. A person suffering aura may have blurred vision, tunnel vision, or may see spots of light.
  3. Pain: Migraine sufferers typically experience debilitating pain. The pain is usually centered on one side of the head and it’s a throbbing/stabbing type of pain. A single migraine can cause up to 72 hours of excruciating pain, often necessitating hospitalization.
  4. Resolution: After the pain subsides, migraine sufferers often feel exhausted, fatigued, and weak. This feeling of severe exhaustion can last up to 24 hours.

People like me, who suffer from chronic Acephalgic migraine, have all the above symptoms except for the head pain. This makes the condition notoriously difficult to diagnose. Before I was diagnosed with my migraines, I had to be checked for brain tumors, brain damage, multiple sclerosis, lyme disease, and I even had to go through therapy for somatoform disorder (hypochondria). It wasn’t until I had ruled all these things out that a headache specialist was able to diagnose me with silent migraine.

Except, in my case, pain's invitation got lost in the mail.

Except, in my case, pain’s invitation got lost in the mail.

My migraines are triggered by florescent lights. I’ve always had them, to some extent, but they became debilitating in 2010 after I was diagnosed with a cornea disorder called Keratoconus. Keratoconus occurs when the cornea becomes misshapen, growing into a “cone-like” shape. Because the cornea is no longer spherical, it does not refract as much light as a healthy cornea, letting more light into the eye. I was able to wear special contacts for my eye problem for awhile, but eventually my chronic dry eye made it impossible to continue the special contacts. I now wear glasses, which don’t fix much. I still have double (or triple, or quadruple) vision and I can’t read large blocks of text.

A normal cornea (left) and a cornea with Keratoconus (right).

A normal cornea (left) and a cornea with Keratoconus (right).

Since Keratoconus can cause blindness, I also had to have a procedure done called “corneal cross-linking”. While the procedure itself is non-invasive and safe, the doctor had to scrape a small layer of epidermis off my cornea. I was blind and in terrible pain for about 3 weeks after that. The procedure didn’t fix the problem, it just stopped it from progressing. My corneas will always be misshapen.

I can run, play, swim, etc. outside without a service dog (although I do take Daphne on outdoor outings because once in awhile my migraines get triggered by things besides florescent lights). However, as soon as I go under florescent lights, I begin to vomit, I become extremely confused, and I start to have problems processing what I see and navigating. I also become unsteady on my feet and can fall. Daphne is trained to help me walk, to guide me around corners, and to pick up things when I drop them. She can also find a few specific people (Stefan and my mom) in a large indoor space if I get separated from them.

Not many people have service dogs for migraines, but most people can’t function at all when they’re in pain from migraines, let alone work interactively with an animal. Also, most people don’t know that in the US, service dogs can legally be used for almost any disability. Any medical problem that limits one or more of your daily life activities (walking, thinking, moving, seeing, hearing, etc.) is legally a disability for purposes of using a service dog. The dog must be trained in at least one task that mitigates the disability.

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In addition to the incredibly disabling features of my migraines, they also put me at risk for a few health concerns. Perhaps the largest health risk for a person suffering from Acephalgic migraine is the likelihood that that person will develop head pain associated with the migraine. Also, anyone who has the “aura” stage of their migraines is at a significant risk for stroke. A study conducted with 100,000 women under 35 suggested that women who have migraine with aura are 6 times as likely to have a stroke than women who didn’t .

I also take the birth control pill. I absolutely need to stay on it because it helps control a lot of other dangerous medical problems that I am currently suffering from. Women on the pill who suffer from migraine with aura are 25 times as likely (about 28 in 100,000) to have a stroke than women who don’t take the pill or have aura.

I am also a smoker. This increases my risk of stroke about 4 times (about 100 in 100,000). I do think I will eventually quit, though. I do not expect to be a life-long smoker.

The use of a service dog for my migraines gives me incredible independence. I would recommend a service dog to anyone suffering the debilitating affects of Acephalgic migraine.

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Meet Princeton!

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This page hasn’t been very active the past few months because we have a new addition to the family!

On March 15th, Stefan and I traveled to Sequim, WA to pick up our puppy from his breeder. At the time, our puppy was only 8.5 weeks old and 16 pounds. It was so exciting to meet our new little guy!

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We named him “Princeton” after my alma mater. Princeton University is also where Stefan was working as professor when we met. It has a lot of meaning to us. Princeton’s registered name is “Rainshadow’s Old Nassau”. “Old Nassau” is a nickname for Princeton University and “Nassau” is also the family name of the Dutch royal family. We figured it suited him because Drentsche Patrijshonds are a breed native to the Netherlands.

It has been a big adjustment period for us. We got him home and started right away on crate training and housebreaking. Prince did great with both. He is a happy puppy and smart as a whip.

Over the past few months, we’ve been working on basic obedience and socialization. Princeton has been exposed to people of all ages, sizes, races, and physical ability. He has also been exposed to a variety of situations. We have walked him outside with a shopping cart, driven in the truck, ridden an elevator in a parking garage, plus tons of other stuff.

We have a private trainer who specializes in service dogs working with us once a week. We’re still only working only working on basic obedience. Right now, he knows “touch”, “sit”, “down”, “crate up”, “out of the kitchen”, and “leave it”.

 

Needless to say, it has been a big adjustment. Daphne was not impressed with the puppy and is still trying to pretend he doesn’t exist. Princeton is doing his best to endear himself to her, though.

In the past few months, Princeton has been growing like a weed. He went from a cute, chubby little puppy to an awkward pre-teen. He’s now 19″ tall at the withers and 34 lbs! He should be a big dog like his dad.

I will be updating this blog so you can all follow Princeton’s progress. If you want to know more about the Drentsche Patrijshond breed, check out Princeton’s page!

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