Haiku

nothing stays the same
and nothing lasts forever
be content with change

resistance breeds pain
permanence is not earthly
born instead in minds

These words were inspired by the article "The Myth of Permanence," in the November 2009 issue of Shambhala Sun. The author Sakyong Mipham Rinpoche states,

"We suffer because we are projecting the myth of permanence upon a situation that is actually conditioned, selfless, and constantly changing. Everything is interrelated and interdependent. There is nothing substantial and separate that we can lean upon. Samsara, 'the cycle of suffering,' is a direct result of our desire for permanence."

Balance Awareness Week: September 20-26, 2009

Recently I discovered just how much of a role balance plays in my life and my health. In the past, I brought up dizziness with my Neurologist. He said I was experiencing vertigo associated with my Migraines, and he left it at that. I figured dizziness and feeling off-balance was just something I would have to live with, so I paid less attention to it. My Neuro may have been lazy for brushing my symptoms aside, but I was wrong for settling for his answer.

It was a reminder that even though I've come a long way in advocating for my health, I was still allowing a person with fancy degrees on the wall, and a white coat, to tell me they know me (and what I need) better than I know myself.

I'm sharing this life lesson so that you won't make the same mistake. If you have dizziness, or something just feels off (I've described my dizziness as a fuzzy, out there sensation at the front of my head) I urge you to discuss your symptoms with your doctor.

For more information about balance, visit the Vestibular Disorders Association (VEDA)

If you're not all caught up on my recent journey of discovery, here's a recap:
The Vestibular System Part I and Part II.
Diagnostic Testing Part I and Part II.

Invisible Illness Awareness Week Starts Today!

If you have a chronic illness, or know someone who does, please take advantage of a free, 5-Day, online conference at Blog Talk Radio. Seminars begin today and run through Friday.

Learn how to cope with chronic illness in your marriage, how to simplify housework, finding a career that's just right for you, attending school with pain, applying and winning disability, how to say "No," and more! For a complete list of seminars and speakers, click on Invisible Illness Week.

30 Things About Jasmine's Invisible Illness(es) You May Not Know

1. The illnesses I live with are: Migraine, Fibromyalgia/CFS, Multiple Chemical Sensitivity, Vertigo and Obstructive Sleep Apnea

2. I was diagnosed with: Migraine around 1991, FM in 2001, MCS around 2003, OSA in 2009

3. But I had symptoms since: Migraines since childhood - worse at puberty, and transformed into Chronic Migraine around 1991

4. The biggest adjustment I’ve had to make is: loss of a social life, and eliminating so many foods from my diet

5. Most people assume: I'm fine because they can't see my illnesses

6. The hardest part about mornings are: waking up with an icepick migraine or major stiffness in my neck, shoulders, arms and hands

7. My favorite medical TV show is: "Nurse Jackie" at the moment. It was "ER" and "St Elsewhere" in the early 80s.

8. A gadget I couldn’t live without is: I can live without them, but I would miss my computer. The Internet gives me an opportunity to connect with others who know exactly what I'm going through. And it's given me the ability to write about my experiences.

9. The hardest part about nights are: how good/active I feel because it's dark, cool, and the air quality is best. Unfortunately, it's when the rest of the world, including my husband, is asleep.

10. Each day I take about 10 different supplements, and a Migraine abortive when needed.

11. Regarding alternative treatments: I'm glad they work for others, but all they've done for me is drain my wallet.

12. If I had to choose between an invisible illness or visible I would choose: to not have to choose

13. Regarding working and career: I'm a homemaker who gets paid in kisses, and I really enjoy my bonuses

14. People would be surprised to know: how well I can sing, but I wouldn't dare let them find out

15. The hardest thing to accept about my new reality is: not being able to be as active as used to be - exertion is a huge trigger

16. Something I never thought I could do with my illness that I did was: learn an online video game and actually be good at it

17. The commercials about my illness: focus too much on pushing drugs versus prevention

18. Something I really miss doing since I was diagnosed is: being physically active

19. It was really hard to have to give up: my old life, so many of my favorite foods, a social life, and my paycheck/independence

20. A new hobby I have taken up since my diagnosis is: playing the where's-the-hidden-MSG game, writing, researching, guitar

21. If I could have one day of feeling normal again I would: enjoy a tennis match under the warm sun

22. My illness has taught me: how to slow down, and how strong I am

23. One thing people say that gets under my skin is: "What do you do all day?" and "I barely put any perfume on," as if it's the smell that's causing an acute Migraine attack instead of the chemicals in the perfume. The word "cure" is thrown around too much.

24. But I love it when people: come to me for advice, and don't take my lack of a social life personally

25. My favorite motto, scripture, quote that gets me through tough times is: "Emancipate yourselves from mental slavery. None but ourselves can free our minds." -Bob Marley's Redemption Song

26. When someone is diagnosed I like to tell them: what you're experiencing is real, and you're not alone

27. Something that has surprised me about living with an illness is: I can live below my means and be happy (gasp!)

28. The nicest thing someone did for me when I wasn’t feeling well was: my husband performs loving acts of kindness every day

29. I’m involved with Invisible Illness Week because: too many people suffer from invisible illness in silence; I'm just doing my part to spread awareness

30. The fact that you read this list makes me feel: visible

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at invisibleillness.com

Tonight's sunset, Imperial Beach style

This evening my husband and I drove down to Imperial Beach to watch the setting sun. Compared to the typical 100-degree days San Diego's been experiencing, it was nice to feel a little chilly as we made our way to the shoreline. Luckily I had someone special to lean on for warmth.

Diagnostic Testing Part II

After much anticipation I finally had my follow-up and received the results of my diagnostic tests: Electronystagmography (ENG) and Vestibular Evoked Myogenic Potentials (VEMPs).

If you're interested in hearing what my exam entailed, this website entitled, Evaluation of Vestibular Function describes it perfectly, along with why each test is used. Just scroll down toward the middle, where it reads, "Vestibular Laboratory Tests."

The only abnormal results discovered were through caloric testing. As the website above describes:

This is the only vestibular test that stimulates one side of the vestibular system at a time. In this test, patients are placed in a 30 degree from prone position to allow the horizontal semicircular canal to be in a vertical orientation. Warm and cold water or air is then flushed into the external auditory canal at 7 degrees above or below body temperature. Varying temperature causes a non-physiologic stimulation of one labyrinth that may evoke vertigo, nystagmus, and occasionally nausea and vomiting. Warm water for example causes the perilymph to rotate towards the ampula, resulting in stimulation of the ipsilateral labyrinth and a drift of the eyes away from the stimulated side. The eyes compensate with a saccade toward the stimulated side. The opposite occurs with cold water stimulation. The mnemonic COWS is used to remember the direction of nystagmus (Cold Opposite Warm Same). Ice water irrigations can be used if milder stimulation does not result in nystagmus. Because caloric irrigation results in stimulation analogous to head movements of 0.002 to 0.004 Hz, significant vestibular asymmetry can exist in the presence of normal caloric responses as real-life head movements are in the 1 to 6 Hz range. Visual fixation should reduce the strength of caloric responses in the presence of normal CNS function. Failure to suppress nystagmus 50-70% with visual fixation is abnormal.

My results:
This video nystagmogram (VNG) was abnormal. This VNG showed no spontaneous, gaze, or positional nystagmus. Saccade testing showed normal latencies, velocities and accuracies. Smooth pursuit and optokinetic tests were normal and symmetrical. The Dix-Hallpike test for benign paroxysmal positional vertigo (BPPV) was negative for both sides. Bithermal caloric irrigations were remarkable for a 56% Left unilateral weakness. Caloric fixation suppression was normal. Caloric testing suggests a peripheral vestibular lesion on the left side.

There's no official diagnosis of Vestibular Migraine, but I only saw the Physician's Assistant during the follow-up. She believes, along with my PT, that the Vestibular Rehabilitation exercises will help my inner ear issues. And if this vestibular lesion is exacerbating my Chronic Migraines, let's hope healing one will minimize the other.

I appreciate you all taking this journey with me, and I'll keep you posted on my progress.

Grand Rounds Blog Carnival - Vol 5.47 Invisible Illness

Grand Rounds Blog Carnival - Vol 5.47 Invisible Illness included my article Understanding Invisible Illnesses.

National Invisible Chronic Illness Awareness Week is September 14th - 20th. Click the link to learn how you can blog for the cause.

Diagnostic Testing

Next week I'm scheduled for a couple of diagnostic tests: Electronystagmography (ENG) and Vestibular Evoked Myogenic Potentials (VEMPs). The Vestibular Disorders Association describes ENG as "a battery (group) of eye-movement tests that look for signs of vestibular dysfunction or neurological problems by measuring nystagmus (a type of involuntary side-to-side eye movement)." The site goes on to explain what occurs during ENG.

During ENG, eye movements are recorded and analyzed via small electrodes placed on the skin around the eyes. The electrodes attach to the skin with an adhesive, much like a small bandage. Alternatively, eye movements may be recorded by videonystagmography (VNG) using an infrared video camera mounted inside goggles that the patient wears instead of sticky-patch electrodes.

One ENG test evaluates the movement of the eyes as they follow a moving target. Another observes eye movements as the head is positioned in different directions. During the caloric test warm or cold water or air is circulated in the ear canal. The temperature change stimulates the inner ear in order to test the nystagmus response.

The Mayo Clinic's website offers some information on what I can expect during the VEMPs test.

This test measures tiny variations in neck muscle contractions that occur when a sudden burst of sound is introduced to the ear. The linear sensing parts of the inner ear cause a brief relaxation of the muscles in the neck which function to keep the head erect. To record VEMPs, a skin electrode patch is placed over the larger neck muscles and on the forehead. The patient lifts their head from the table while listening to a clicking sound. The electrodes then detect tiny changes in muscle contractions, which are analyzed by a computer.

I'll post my results as soon as I receive them. This is another one of those situations where you hope something is found almost as much as you hope nothing is found. Migraineurs always want - correction, we need - validation, and the thought that we may hear "you're normal," when we feel 100 miles from normal, can cause a little anxiety.

The Vestibular System Part II

A couple weeks ago I completed the third week of physical therapy (six sessions), and I must say things are going well. I've been filled with an immeasurable amount of hope that my doctor, physical therapist, and I will solve my chronic neck pain without medication, nerve blocks or radio-frequency. The Chronic Migraines will hopefully lessen as well, especially since I'm getting more and more strict about the foods I consume.

Some recommendations from my physical therapist for:

inner ear disorder: usage of Vestibular Rehabilitation Therapy (VRT)

neck pain: support arms with pillows while seated and sleeping (wedge for neck while sleeping - having my head elevated helps with my dizziness and head pain/pressure, and a wedge for leg support) while sleeping; also for neck pain I have hot and cold packs; another tip she suggested was trimming my long, thick hair because the weight adds strain on my neck

eyes: pink-lensed anti-glare glasses (excellent when using computer)

eye strain: minimize video games, which overstimulate the brain (remember I lack the ability to block all senses, so video games with flashing lights, bright colors, movement and loud sounds will cause Migraine and Vertigo; also limit overall computer time and reading - achieve this by resting every 10 minutes and work your way up to longer time period

remembering names, places, directions, etc.: I have permission not to; all I have to remember is my name (what's interesting is the less pressure I put on myself to remember, the more I actually remember)

my relationship: before I vent about my pain - or something that's causing me stress - with my husband, I am to ask him how much time he'll just listen, knowing he's not allowed to try to fix the problem; also to create a list (see below) of all the things my husband does for me that help minimize my pain (by doing these things he is fixing my problems)

Some examples from my list:
works full-time so I don't have to
provides us with health insurance
makes me laugh like no other
understands or attempt to understand what I'm experiencing
fixes things around the house
drives me to my doctor appointments, and asks questions or takes mental notes
walks with me
talks with me
lifts heavy things for me
never complains
saves my love letters and notes
found my think-outside-the-box Neuro, who then introduced me to my amazing PT
...and some more things that are too personal to share