More Linky Love: Xyrem, Lyrica & Neurontin, Oh My!

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I am STILL under the weather fighting off this crazy upper respiratory infection that I just can't seem to shake ... 16 days and counting now. My spouse, on the other hand, caught my bug and came down with a case of 'just the sniffles' a few days ago. He reminds me of my Dad, who almost never go sick.

Hmmph! Sometimes life seems so unfair...

I'm afraid I only have the energy for a few short posts this week, as I am on a deadline to get some paperwork completed for Social Security by March 1st and my battle with the cold that doesn't end has put me way behind my timetable for getting it done. I tried calling several times to get an extension, but since I have not heard back, I am wary about presuming I can have a few extra days to get this done.

Thankfully my fibro friend Dot over at Fibro World left me a comment and let me know she also wrote a post about Xyrem that has the distinction of being featured in this week's Grand Rounds blog carnival hosted at MD Whistleblower. Reading her current post made me realize that Dot and I are in the same boat when it comes to fibromyalgia: we both suffer severe, intractable symptoms that, so far, have been mostly unresponsive to available treatment options. We also share a keen sense of humor, a love of blogging and hope that things will be different for us in the future.

Then my friend Jolene from Graceful Agony stopped by again to let me know of breaking news: Lyrica and Neurontin are under fire for not being the pain and fibromyalgia cures they were touted to be. In the case of Lyrica, it seems a researcher admitted that he falsified data that showed the medication actually helped treat pain and now faces 10 years in prison and a hefty fine. Here in the US, pain sufferers have filed a class action lawsuit against the makers of Neurontin stating that it was falsely advertised as a pain medication.

Guess I now have my answer as to why these drugs never worked for me...

I seem to remember that just last month the fibromyalgia drug Savella was facing a recall because it appears to cause high blood pressure in about 20% of people taking it to treat fibromyalgia. You can read more about this by clicking here: Group urges recall of drug for fibromyalgia. After discussing this with my neurologist, she reconsidered and decided that Savella was probably not a good choice for me.

Thanks ladies for helping me put this blog post together. Now it's back to the paperwork, which says it should only take an hour to complete. In reality, is taking me several days so far, and I am only about halfway done.

I think this sums it up for me right now: :-(

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Linky Love: What Are Other People Saying About Xyrem?

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After spending several years trying to treat my pain, I have come to believe that I should be aiming at the target of sleep. My current thought process is 'if could just get some deep, restorative sleep I might feel a significant difference in my fibromyalgia and fatigue symptoms.' Unfortunately, as I have chronicled here on OMA&P!, even with religious use of my CPAP machine to treat my sleep apnea, other sleep disorders like delayed phase disorder and a lack stage 4 deep sleep every night thwart my best effort.

My revelations impress upon me the fact that fibromyalgia is truly a brain disorder that affects both pain regulation and sleep. I think the medical specialty of neurology is better suited to treat fibromylagia than rheumatology. Current, I see a neurologist who seems to have a lot of ideas about what we can try. I found her after I felt like my rheumatologist had no more treatment options to offer and I decided to stop wasting my time seeing him.

After receiving a comment from Jolene at Graceful Agony: Living your best life despite chronic pain who happened to write a blog post this week also about Xyrem, I decided to check out what other people are saying about Xyrem.

Xyrem: Some Questions and Misperceptions

This is an article from the Talk About Sleep website, which I frequent for information about CPAP tricks and tips. Apparently persons with narcolepsy use Xyrem to help treat this condition. It seems that some people are having good results with Xyrem for this condition, but fibromyalgia is not narcolepsy.

Xyrem Sounds Promising

There seems to be a lot of chatter over the the Daily Strength Fibromyalgia Support Groups about Xyrem being a promising new treatment for fibromyalgia. Interspersed are some accounts about side-effects and negative experiences as well. The main point being made is that fibromyalgia disrupts sleep patterns and person with fibromyalgia typically do not get enough deep sleep, which worsens pain and fatigue.

I also stumble across some older articles at ProHealth.com and the National Fibromyalgia Association websites, but nothing within the past year or so. There are some recent message board comments at ProHealth about Xyrem--to check it out click here.

I don't know that I am going to be trying Xyrem any time soon. My little trip around the Internet today has raised the issue that my medical insurance may not pay for this medication since it is not currently FDA approved to treat fbromyalgia. Right now, my neurologist is not convinced this is a good option for me. When I last saw her at the beginning of February, she planned to call my sleep specialist and discuss this and his other recommendations for me. I guess I'll find out what she decides at my next appointment in a month or so.

On a more happy note....

Today's post is brought to you by Happyneuron.com. Did you know that something as simple and easy as playing games can help the cognitive problems experienced by persons living with fibromyalgia? So why not have some fun beating fibro-fog by playing brain fitness games at Happyneuron. Their scientifically developed games stimulate your attention, language and memory skills. Try their games for free by clicking brain fitness and sign up for a risk-free 7 day trial membership.

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My Friend Buys a Condo & Gets a Home Buyer Tax Credit

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I am so excited for my friend Shannon. She just closed on a condo in Simi Valley! I know you might think that this isn't the best time to be purchasing real estate, but the 2010 First-Time Home Buyer Tax Credit is what helped my friend Shannon make her dream of home ownership possible.

During her search, Shannon showed persistence, determination and thoughtfulness. Her search spanned several months and she only pursued properties that were in her price range and eligible for the tax credit. Unable to find something before the original tax credit was set to expire, she rejoiced when the tax credit was extended, giving her more time to continue her search. Shannon planned this move for quite a while, saving up money for a down payment and working hard at her job with a major health insurance company.

This is what I learned from her about the 2010 First-Time Home Buyer's Tax Credit:

• First-time home buyers and those who have not owned a home in the last 3 years are eligible
• Those eligible can receive up to an $8,000 federal tax credit
• Income limits are $125,000 for single persons and $225,000 for married couples
• To take advantage of the program, you must act by April 30, 2010
• There may not be another extension of this tax credit program

I also learned that homeowners who have lived in their current home consecutively for 5 of the past 8 years and are looking to move into a new home can receive up to a $6,500 tax credit.

Here is a video with more information:

Click here for even more information: Home Buyer Tax Credit

I have to say that Shannon's recent plunge into homeownership got me nostalgic about my own home buying experience back in 1994. Buying my own home, which I did as a single woman, was both a dream come true and a leap of faith. I was so ready to leave the apartment life behind and settle down in a permanent location. At that time, real estate prices in Los Angeles were near an all time low and interest rates were favorable, which made buying in West Los Angeles affordable. I also received an inheritance from my grandfather who died a few years earlier which gave the funds for a down payment.

I recognize how fortunate I was to be able to purchase a home back then. Now with my chronic illnesses and disability, it is a true comfort to be living in my own home with my husband and my furry children. I no longer need to contend with noisy neighbors on the other side of the bedroom wall, landlords, restrictions on pets and fluctuating rent payments. I can make all the modifications I need to my home to accommodate my current state of health. And I can head outside to my container garden, which has been a source of both occupational therapy, accomplishment and fresh vegetables for the past several years.

Congratulation Shannon on your new home and welcome to homeownership!

Xyrem: How Does This Make Sense?

Image by caseywest via Flickr

O.K. so the bloom is off the rose. I switched back to my OTC cough syrup because, after two nights with the Robitussion-AC, I was starting to feel a little loopy. My liver, filled with the HCV virus, doesn't like certain medications and has a hard time getting things out of my system.

Oh well...

But that brings me to the thought I had as I was wrapped up my post from yesterday. My last comment was that I wished that my doctors were as worried about me getting a good night's sleep as they were about getting me addicted to controlled substances because maybe I'd be in a different place right now. As I wrote this, I remembered what my sleep specialist does want to give me...

Ever heard of the date-rape drug GHB? Guess what? It is also called the prescription drug Xyrem and it is being prescribed to people with fibromyalgia to help them sleep. Here is the deal, as I have learned from other persons living with fibromyalgia who have taken the drug and one of my doctors who is adamantly opposed to any of her patients taking it:

• If you take Xyrem, you need to be in bed and ready to go to sleep, because within minutes of taking it, your body will be paralyzed.
• If you get out of bed, you risk falling and injuring yourself.
• You risk having an "accident" in bed (so maybe an adult diaper is in order.)
• I personally know someone who took this medication and did not fall asleep. Instead, she lay in bed paralyzed for 4 hours, unable to move, completely awake.
• You take this medication in two nightly doses, about 4 hours apart (i.e. it only lasts for 4 hours.)
• There are side effects like nausea, although the prevailing prescribing wisdom is to have the patient take a large enough dose that they just sleep through the side effects.

After the sleep specialist first suggested this drug, I expressed my concerns to my husband about what would happen if there was an emergency in the middle of the night and I was laying in bed paralyzed from Xyrem. After all, earthquakes happen at all hours of the day and night, not to mention house fires and other crazy things. How do you call for help or get out the door (or window as the case may be) when you are unable to move?

My husband said to me, "They must only give this drug to someone who lives with another person, since you are paralyzed for 4 hours after you take it."

"No, " I replied, "I met someone who was single who was given the drug."

How does this make any sense? Give me a benzodiazepine PLEASE before you start prescribing this kind of madness. I mean, come on. Sure, Xyrem might not be habit-forming, but who in their right mind willingly submits to taking this medication?

I cannot do it. I have too many problems as it is with medication side-effects; I cannot fathom the torture it would be to lay helpless for 4 hours unable to do anything about them. I have images of Jim Morrison's final hour in my head.

I am desperate for a night of lovely, deep, restorative sleep ... but I haven't lost my mind just yet.

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A Pleasant Side-Effect

Image by caseywest via Flickr

I traded emails with my family medicine doctor today and found out that the cold I have may last 2 to 3 weeks if it takes a course similar to other patients she has recently seen in the clinic. Wonderful! So today I started planning accordingly, canceling and rescheduling trips outside the house and preparing myself mentally for a prolonged period of lower energy. No flare-up of my fibromyalgia symptoms get, but it seems foolish not to expect it will happen at some point.

I've been taking the Robitussin AC that was prescribed for me yesterday. For those of you not in the know, Robitussin AC is Guaifenesin and codeine. Getting a better night's sleep is a pleasant side effect of the codeine. That got me thinking about my most recent hypothesis that maybe all I really need to help better manage my delayed phase sleep disorder is something to take before bed that could just help me fall asleep.

"They're not going to give you codeine so you can fall asleep." my husband said in response to my comment on the subject. (Did I actually say that out loud?!?) "They are more worried you'll become addicted to it. You don't want to wind up like Michael Jackson."

No, I don't want to wind up like Michael Jackson. I let the conversation go because prolonged talking worsens my hacking cough, even with the cough syrup on board. But I wanted to argue with him about the research that shows that pain patients rarely become addicted to the pain medications that they take. In the end, I guess it doesn't matter because none of the medical professionals I've seen ever offered to give me "the good stuff" to help me fall asleep and I am not stupid enough to ask and get myself labeled as "drug-seeking."

Which got me thinking that if my doctors were as worried about me getting a good night's sleep as they were about getting me addicted to controlled substances, maybe I'd be in a different place right now...

To Be Continued...

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Out of Order

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Since I finished my duties as the host of the last Patients for a Moment blog carnival, I took some time off to attend to a cold I caught last Monday. Only problem is that I still have the same cold, different symptoms, a week later. Since yesterday was a holiday, President's Day here in the U.S., to get checked out required a trip to the FastTrack ER at Santa Monica-UCLA Hospital. Luckily, while my husband did not have he day off, my sister Cyndie did and came down from the Valley to take me there.

I really don't like having to go to such extremes, but with type 2 diabetes and my blood sugars on the high side, I start getting really worried when any viral illness starts dragging out. The longer I stay congested the greater the possibility that a secondary infection will rear its ugly head. The doctor I saw did order a chest x-ray which was clear, which is good news. I'm not sure he really understood my concerns and reasons for coming to the ER and I am concerned that I did not walk away with a prescription for an antibiotic to prevent this from happening.

I know that antibiotics don't help you get over a cold or flu, by the way. I am really clear on that point. What I am worried about is the potential for bacterial infections to take advantage of the the extra mucous that is everywhere inside me right now. Seems my particular combination of health problems make getting over a cold a prolonged and infection-prone affair.

So before I started writing this post, I send an email to my family medicine doctor outlining my concerns. She'll probably get it tomorrow and she can review what was done for me in the ER and give me her opinion. Really, all I am trying to do is prevent another trip this week to see a doctor and then go to the pharmacy. Nothing would irk me more than to have to make multiple trips to be seem because someone wasn't proactive enough with their care of my symptoms.

I'm sick, tired and grumpy and just want to stay home and get better, but better seems a long way off right now. At least the cough syrup with codeine knocked me out yesterday afternoon and I was able to get some better sleep. Hopefully that will help my health and outlook.

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Patients for a Moment #16: Four Letter Words

Welcome to the 16th edition of the Patients for a Moment (PFAM) blog carnival. This is my first time hosting PFAM and I really enjoyed the experience. Thanks to Duncan Cross for allowing me to pose this Valentine's Day inspired question:

Love? Hate? What are the four letter words you use to describe your life with chronic illness?

I enjoyed reading all the submissions and found a whole range of four letter words that describe life with chronic illness. They include: real, help, much more, near and dear, full, work, care, muse, loss, miss, risk and defy.

REAL

In a post that is a true expression of love, Ashley of Lymenaide: living in Harmony with Lyme submitted a post written by her husband Sander about her struggles with Lyme disease. Ashely educates us that in her husband's native Australia, the term fair dinkum means real. This post touched my heart as Sander describes the real sacrifices he has made to help Ashely get on the road to recovery from Lyme disease. Read Lyme is a Fair Dinkum Disease.

HELP

Trudy of A New Beginning: My Life with RSD starts by talking about love, then gets to the heart of the matter. After being diagnosed with Reflex Sympathetic Dystrophy in 2005, Trudy needed a whole lot of help from her husband with just about everything when she lost the use of her hands. Her post illustrates what can happen when a marriage transforms from a husband and wife team to a patient and nurse relationship. Read Keeping Love Alive During Illness.

MUCH MORE

"The word pain just sounds so insignificant," Jolene of Graceful Agony: Living your best life despite chronic pain states. For something that impacts her life so completely, she thinks pain should be a word that is bigger, bolder and commands more respect and attention. Her post reminds all of us who live with chronic pain that pain is what we feel, not who we are. In her post she invites us all to get to know much more about who Jolene really is despite living with chronic pain. Read Pain is a 4 letter word.


NEAR & DEAR

Annie's blog title is both provocative and full of truth: It's Time To Get Over How Fragile You Are. Tired of life being dictated by her health problems, Annie endeavors to be proactive about really living. Annie shares with us a "beautiful lie" from her childhood and her discovery that chronic illness has brought her more love from the people that are near and dear to her than she ever thought she would have in her life. Read Love and Chronic Illness.

FULL

Laurie at A Chronic Dose ponders the roles of love and hate in her 29 year journey with chronic illnesses. On the one hand, she notes that time and acceptance have helped her not feel hatred when she thinks of the various losses linked to her health struggles. On the other, she admires how she has figured out how to build a life full of things she wants to do and how she fortifies it against the attempts of illness to take little pieces away from her. She realizes that living a full life means she doesn't have to hate her illnesses. Read Give and Take.

WORK

Take a trip through time with Lisa at the blog Brass and Ivory, brought to you by the four letter word work. Her post demonstrates how chronic illness can change the course of a life through its up and downs. Her definition of work has changed over time and, yes, managing health problems is work. Yet despite it all, she shows us how our desire to work--to shape, form and improve ourselves and proceed towards goals or along a path--still remains. Read Illness in One Word: WORK.

CARE

Enjoy a little Valentine's Day whimsy with a poem written by Dot at Fibro World. Like she says, living with fibromyalgia might be blue, but the support of all the people she cares about helps her get through. Read Fibro Valentine: Roses Are Red, Fibro Is Blue...


MUSE

Sharon at After Gadget: Facing Life After the Loss of My Service Dog writes a loving and touching post about her life with her "hindrance dog." It seems that life with Gadget didn't start out very well, but after struggles and frustrations during training he transformed into a magnificent helper on which she came to rely. Though he is no longer with Sharon, the memories of their time together now bring her happiness and Gadget lives on as her blogging muse. Read Sick Humor Retro: The Hindrance Dog.

LOSS

Living with illness brings many changes to our lives, both visible and invisible. Kelly at Rheumatoid Arthritis Warrior took the time to create a list of 20 ways RA has changed what she sees when she looks in her mirror. Her simple list recounts for us of all the little ways illness creates loss in our lives. Read 20 Signs of Rheumatoid Arthritis in the Mirror.


MISS

All too often part of the illness experience is letting go of previous life plans and careers that just don't fit any more. Finding yourself on the path not taken can make you feel totally lost and missing your old, pre-illness life. Diana from Somebody Heal Me: the musing of a chronic migraineur shares with us what it feels like now that chronic migraines have taken away her ability to pursue her dream profession. Read Lost: Chronic Pain Erased My Plans.


RISK

How difficult it must be to know that each time you eat a new food you risk worsening your Crohn's disease and suffering some very unpleasant, gut-twisting consequences. Such is the life of Duncan from Duncan Cross: ill. humored who is the founder of the PFAM blog carnival. Food is his four letter word, and until science comes up with a better way for him to get nutrition, he is resigned to having to eat it. Read Food is a four-letter word.

DEFY

My contribution to this edition of the PFAM blog carnival is a post about the words can't, won't and don't, which symbolize the barriers and limitations people with chronic illness face. While it is true there are things I can not do or change, I can defy those limits by focusing on the can's, do's and will's that still exist in my life. I'm rediscovered my fighting spirit, striving to live my best life despite chronic illness. Read Can't, Won't, Don't.


That's all for this edition of Patients for a Moment. Join us next time when Leslie from Getting Closer to Myself hosts on February 24th. Her question for us then:

What’s Illness Got To Do With It? What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

Can't, Won't, Don't

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I've been thinking about the four letter words associated with my life with chronic illness a lot lately in my role as host for the upcoming February 10th edition of the Patients for a Moment blog carnival. Words like cope, pain, fear, hate, ache, hard, rest, pace, heal, ouch, sigh, woes and hope. Yet for some reason the combination of can't, won't and don't kept rolling around in my head over the past few days...

Main Entry: can't
Pronunciation: \ˈkant, ˈkänt, especially Southern ˈkānt\

Date: 15th century
: can not

Examples:

• The long-term disability insurance company says: We can't pay benefits for more than two years for someone with fibromyalgia and chronic fatigue syndrome.
• I say: I can't do as much as I used to do because pain and fatigue limit me.
  

Main Entry: ¹don't
Pronunciation: \ˈdōnt\

Date: 1639

1 : do not
2 : does not

Examples:

• The doctor says: I don't think there is any reason for you to come back and see me again. I don't think there is anything more I can do for you.
• I say: I don't feel good. The doctors don't really know what is wrong with me and they don't really have anything to give me to make me better.
  

Main Entry: won't
Pronunciation: \ˈwōnt; New England, upstate NY, nPa ˌwənt, ˈwənt; greater NYC ˈwünt; eSC ˈwünt, ˈwu̇nt\

Date: 1562

: will not

Examples:

• My spouse says: You won't be able to keep going to those appointments because we can't afford the out-of-pocket costs.
• I say: I am having a bad day and I won't be able to meet up with you like we planned.
  

In my teens and 20's, words like can't, don't and won't were akin to waving a red cape in front of a bull. Anyone speaking those words, telling me what I wasn't able to do got a passionate 'F*** you!' as a response. I then proceeded to show that person they were absolutely wrong: I could, I would and I did.

In my 30's, I felt the bile rise in my throat when people I supervised as social work program manager uttered those words. I was all about getting things done for our clients and I tried very hard to inspire others to rise up and eliminate barriers by knocking them down or figuring out how to get around them. I came to view people who talked in can'ts, don'ts and won'ts as lacking motivation, creativity and determination.

Now in my 40's and living a life with chronic illness, I have to accept that there are some things I can not do or change. For the first few years of my transition into this new life, I got pretty upset when ever I ran into people who believe there wasn't anything wrong with me or focused on their limitations and inability to help me. That's when I came full circle. I somehow found my passion to once again prove the nay-sayers wrong by finding reasonable and appropriate things I could do despite my chronic pain and fatigue. I also started cutting loose those people focused on their limits and unable to think outside of the box for new and novel ways that could help me. I got it that chronic illness is really all about self-management of symptoms like pacing, resting, planning and saying no and self-help approaches to coping like play, pray and support from others.

So go ahead, chronic illnesses, keep telling me I can't, won't and don't. This tired and achy babe still has a fire in her belly and is ready to take you on. I've got more life to live and I'll be damned if I am going to let you take it away from me. I'm on a mission to live my best life despite chronic illness and that mean focusing on can, do, does and will.

~definitions courtesy of Merriam-Webster.com


This post is sponsored by Medi-Gap Policies.com. Find the best Medicare supplemental insurance rates in your area: medicare supplement plans

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Walking in My Shoes

Image by moriza via Flickr

I'm busy working on the Patients for a Moment blog carnival and having a great time doing it. I've been traveling the web to meet new patient bloggers and reading some funny, inspiring, informative and heartwarming posts.

In my travels, I ran across this post at Science Blogs from a professor and cancer researcher. Seems he developed pneumonia because he kept trying to push and push until he crashed and now has to spend four weeks in bed to recover.

His post is titled: Meditations on those with chronic illnesses and I thought it was an interesting look at the process of a "healthy" person gaining some empathy for those of us with chronic illness. Check it out and let me know what you think.

What is the Autonomic Nervous System?

I'm looking at the image I added to this blog post and nodding my head. This may be one of those posts that don't require many words. So maybe I'll just highlight the main concepts and let the images and the table below do most of the talking today.

The autonomic nervous system works 24/7/365, i.e all the time. Humans have very little control over what autonomic nervous system does, with the exception of breathing. Some individuals can be trained with biofeedback techniques to influence, but not control, heart rate and blood pressure.

The autonomic nervous system has three components: the sympathetic nervous system, the parasympathetic nervous system and the lesser known enteric nervous system. The sympathetic nervous system controls the "flight or fight" response in our bodies, the "Oh no, there is a lion! Let's get out of here!" response. The parasympathetic nervous system controls the "rest and digest" response. The enteric nervous system is known as our second brain and is located in our gut, although why we need a second brain surrounding our stomachs is still unknown.

Here is a summary of how the sympathetic and parasympathetic nervous systems effect some of our internal structures and organs (chart courtesy of the Neuroscience for Kids website):

The Autonomic Nervous System
Structure	Sympathetic Stimulation	Parasympathetic Stimulation
Iris (eye muscle)	Pupil dilation	Pupil constriction
Salivary Glands	Saliva production reduced	Saliva production increased
Oral/Nasal Mucosa	Mucus production reduced	Mucus production increased
Heart	Heart rate and force increased	Heart rate and force decreased
Lung	Bronchial muscle relaxed	Bronchial muscle contracted
Stomach	Peristalsis reduced	Gastric juice secreted; motility increased
Small Intestine	Motility reduced	Digestion increased
Large Intestine	Motility reduced	Secretions and motility increased
Liver	Increased conversion of glycogen to glucose
Kidney	Decreased urine secretion	Increased urine secretion
Adrenal medulla	Norepinephrine and epinephrine secreted
Bladder	Wall relaxed Sphincter closed	Wall contracted Sphincter relaxed

In dysautonomia, the sympathetic and parasympathetic responses become dysregulated. One way to measure the responsiveness of the autonomic nervous system is through a test called a heart rate variability study. You may be surprised to learn that a normal heart does not beat at regularly timed intervals. Apparently looking at a heart beat pattern reveals the state of the autonomic nervous system.

According to the results of my heart beat variability study done back in 2005, my heart does beat in a more regular pattern, which indicates that both my sympathetic and parasympathetic systems have less tone or responsiveness. It also showed that overall my sympathetic nervous system was more active than my parasympathetic nervous system. This explains why the my symptoms of dysautonomia trouble me so much, because my body spends way more time in "fight or flight" than "rest and digest."

If a picture is worth a thousand words, you will now begin to see how disconcerting and uncomfortable it might be to live in a body where all your automatic functions are revved up and out of sync.

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PFAM 2/10: Love, Hate and Other Four Letter Words

Image by doryexmachina via Flickr

This is the last call for submission for the February 10th edition of the Patients for a Moment (PFAM). Per the PFAM guidelines, the deadline to submit your published blog post to the host (that would be me!) is by the end of the day today. I am looking forward to reading the submissions and admiring the creativity that abounds in the blogging community.

I wonder how many four letter words I am going to find in the blog posts submitted. I'm excited to hear the your answers to the following query.

Ah, February! Valentine's Day will soon be here and love is in the air. Or is it, if you are a patient for a moment? Is love still in your vocabulary or has it been replaced by other four letter words? Let us all know when you submit your blog post answering this question:

Love? Hate? What are the four letter words you use to describe your life with chronic illness?

I am accepting submissions until 11:59 PM PST today, so there is still time to join PFAM by contacting me.

How Do You Get Dysautonomia?

Image by Bob.Fornal via Flickr

Today I want to talk a bit about how you get dysautonomia. Let's start with a tidbit from the National Dysautonomia Research Foundation:

Autonomic dysfunction can occur as a secondary condition of another disease process, like diabetes, or as a primary disorder where the autonomic nervous system is the only system impacted. These conditions are often misdiagnosed.

I believe that I have been living with dysautonomia for at least 12 years, but it wasn't until 2007 that I was "officially" diagnosed with the disorder. Several doctors misdiagnosed me with panic or anxiety disorders before the true cause of my symptoms was identified (see my post from yesterday to get my take on this issue.)

Here is a list of factors that can lead to the development of dysautonomia, adapted from the dysautonomia article at Wikipedia:

• Genetic factors - often results in the most severe cases of dysautonomia
• Hereditary connective tissue diseases (i.e. Ehlers-Danlos Syndrome)
• Exposure to chemicals (i.e. chemotherapy for cancer treatment)
• Viral illness (Hepatitis C?)
• Compression of important arteries and/or nerves (Thoracic Outlet Syndrome?)
  
• Pregnancy
• Diabetes and other autoimmune disorders
• Parkinson's disease and other degenerative neurological diseases
• Physical trauma or injury which damages the autonomic nervous system
  
• Brain injury

As you can see, there are many causes of dysautonomia. My doctors hypothesize that the cause of my dysautonomia was the chemotherapy I received during my leukemia treatment 22 years ago. Because I am a first generation cancer survivor, which chemotherapy drug(s) caused the damage, the exact mechanism of how the damage happened or what part(s) of my autonomic nervous system where damaged is currently unknown. Research has only just begun in this area.

While my cancer treatment history is probably the primary reason I have dysautonomia, I have highlighted some of the other medical conditions I have that appear on this list. Seems I have three additional medical conditions that are risk factors for developing dysautonomia. I wonder how my chronic Hepatitis C infection, Thoracic Outlet Syndrome and Type 2 diabetes affect my dysautonomia. At the very least, being vigilant about keeping my blood sugar under tight control seems important to prevent my dysautonomia from getting worse. This is also one of the reasons I want to treat my Hepatitis C infection when antiviral drugs become available. As for Thoracic Outlet Syndrome, there doesn't seem to be much I can do about it: surgery to attempt to correct the problem isn't an option for me.

That said, I know from my undergraduate coursework in Kinesiology that repairing a damaged brain and nervous system is well beyond the scope of today's medical science. How things like menopause and aging will effect my dysautonomia symptoms is also unknown. All my doctors can do is treat my symptoms, but sometimes treating one symptom makes other symptoms worse or causes side-effects.

I also want to mention here that there is a prominent doctor and researcher from Mexico City, Dr. Manuel Martínez Lavín, who believes that dysautonomia is at the root of fibromyalgia. You can read more about his theory here. I believe that Dr. Martínez Lavín is on to something and I am the perfect case study to prove his theory.

To end these series of posts on dysautonomia, my next blog entry will attempt to explain what the autonomic nervous system is and does. Stay tuned!

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Dysautonomia: A Clarification

Image via Wikipedia

I really don't want you to get the wrong idea about dysautonomia, so today I need to take a step back and clarify a key point.

I realize as I have been talking about the symptoms of dysautonomia that it might sound an awful lot like a description of anxiety or panic attacks. Dysautonomia is not a mental health disorder, it is a neurological disorder. I can say from experience that the symptoms are similar to a panic attack, but in dysautonomia the feelings of anxiety and panic come AFTER the physical symptoms of rapid heart rate, dizziness, feeling faint and others occur. In an anxiety or panic disorder, anxious thoughts and feelings precede the onset of physical symptoms.

Something that the medical and psychiatric communities should discuss more is how mental health disorders are diagnosed. I know from my clinical social worker training that a person can only be diagnosed with a mental disorder AFTER all physical causes for the symptoms they are experiencing have been ruled out. There are many physical conditions that cause psychological symptoms, including many endocrine and hormonal disorders, neurological conditions and autoimmune disorders. I personally think it is irresponsible for any health or mental health provider to diagnose a mental health disorder without having their patient complete a thorough medical work-up FIRST to rule out health problems.

O.K., I'll get off my soapbox now...

I guess another way to look at it is from a mind/body perspective. In dysautonomia, the body malfunctions and behaves like it is responding to seeing a tiger that is ready to pounce, leaving the sufferer wondering if they are having a heart or panic attack. With anxiety and panic disorders, the mind imagines a tiger (boss, bill collector, spouse, child) ready to pounce and these thoughts trigger a stress response from the body.

According to my cardiologist, who began her medical career as a psychiatrist, the symptoms of dysautonomia cause a person to feeling anxious. Feeling anxious does not cause dysautonomia. No, you need something that damages the nervous system to accomplish that, which will be the subject of tomorrow post.

OMA&P! Hosting the PFAM Blog Carnival 2/10/10

Image by laurenmarek via Flickr

Selena at Oh My Aches and Pains! is hosting the next edition of the Patients for a Moment blog carnival on February 10, 2010. Here is the question she is asking participants to respond to for the next edition:

Ah, February! Valentine's Day will soon be here and love is in the air. Or is it, if you are a patient for a moment? Is love still in your vocabulary or has it been replaced by other four letter words? Let us all know when you submit your blog post answering this question:

Love? Hate? What are the four letter words you use to describe your life with chronic illness?

Please send your submissions to Selena@ohmyachesandpains.info by 11:59 PM PST on February 7. We can't wait to see your answers!

When Things Just Don't Work Right

Image by TedRheingold via Flickr

I've been battling spy ware and malware on my computer all yesterday, trying to get rid of the viruses and restore my computer to good health. In biology there is a word for that: homeostasis. That is when all the parts of the human body work together to achieve a stable, functional state. Just like my computer, if you introduce a virus, the human stable state is disrupted. Our bodies strive to return us back to homeostasis, a process we know better as healing.

As I write this, my computer has not yet returned to normal. I can't tell you how many forum posts I have read and programs I have downloaded trying to fix this myself. I am beginning to wonder if I will need to take my computer in to be repaired.

After a visit yesterday with my neurologist, I acknowledge once again that my body has not returned to normal yet either. I really like my neurologist because she listens to me and understands how complicated things are inside my body. Yesterday we talked a lot about my dysautonomia and how it prevents me from returning to homeostasis. I told my doctor that I understand she can not fix me. I just want her to figure out ways to help me manage my symptoms better and restore some function. She agreed that this was reasonable, but would take some out-of-the-box thinking.

That's me, living my life out of the box!

Unlike my computer which will get fixed one way or another, we can't just reboot my autonomic nervous system. I walk a very thin line between feeling not good and feeling not crappy. Literally, my nerves are so sensitive that a stressful thought, a swing in my blood sugar, too much traffic on the street, too much loud noise from the neighbors or too much fatigue makes my body just start shouting. My body overreacts and my heart starts racing, my palms start sweating and my body feels shaky and faint.

As we discussed at my appointment, once my body starts shouting, no amount of meditation, visualization, guided imagery, focused breathing or positive thinking can make it stop. It's like being on a roller coaster, realizing as you pull away from the platform that you have changed your mind and want to get off and being overcome with terror as you start climbing the first incline with no escape in sight. White knuckling it, you are stuck on that roller coaster until it pulls back into the station. I constantly remind myself that I need to just breath and just wait it out. Because so far, whether it's a few minutes or a few hours, the symptoms do dissipate eventually.

My only consolation is that I have two wonderful doctors who really listen and are willing and able to help me through these episodes. They are my neurologist and my cardiologist. I hit a real low in 2007 when my dysautonomia was so bad I felt really agitated and thought I was going to have to been heavily sedated. Just out of the hospital, I was absolutely prostrated and yet I felt the need to pace the floor because I had so much nervous energy. Thank goodness I found these doctors since then and I will not have to go through that alone again. Which is a good thing because I think my Christmas present (aka menopause) is making my dysautonomia worse.

I left my appointment today hopeful that my neurologist will be struck by inspiration and new, novel treatment ideas will be born. I anticipate things we haven't tried yet and insights we hadn't considered. We both want me to achieve homeostasis again. We both feel less than happy about my current state of functioning. I like that she can empathize with my situation and not feel discouraged or defeated by it. I am rooting for her, with her education and experience, to figuratively pull a rabbit out of her hat. Maybe she will surprise me and do just that...

As for my computer, well I haven't given up on it either. I will figure out a way to get it back into an operational state. It is amazing how disruptive losing your homeostasis can be, whether you are a computer or a human being.

Can You Hear My Heart Beat, Heart Beat?

Image by Stephen Poff via Flickr

There was a lot going on this past weekend.

Saturday I needed to get my dogs bathed. Another plumbing issue reared it's ugly head on Saturday evening necessitating a trip to the hardware store. Saturday's mail brought the wrong strength of one of my prescription medications and I only have about 10 days left of the correct strength. I also received a letter from Social Security informing me that they want to conduct a Continuing Disability Review and expect all the paperwork sent to me returned completed by March 1st.

I went to bed Saturday night aware that the culmination of all my hard work training my dog Brunswick would be put to the test Sunday afternoon when we would go to PetsMart and participate in the Canine Good Citizen (CGC) test.

Perhaps this list doesn't really seem like a lot, but my body let me know differently. I got the worst night's sleep Saturday into Sunday thanks to an exacerbation of my dysautonomia symptoms. I haven't talked a lot about dysautonomia on my blog, but I really should. If I were to rank my current health problems in terms of troublesome symptoms it would be:

1. dysautonomia
2. chronic fatigue
3. chronic pain

What is dysautonomia? Here is a definition I like from the National Dysautonomia Research Foundation:

Dysautonomia is a general term used to describe a breakdown, or failure of the autonomic nervous system. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide ranging and can include problems with the regulation of heart rate, blood pressure, body temperature and perspiration. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness and cognitive impairment.

The cluster of symptoms that kept me up all night and into the early morning hours were a rapid heart beat, the feeling of my heart pounding and skipping beats and a corresponding feeling of panic, like I was running away from a tiger. It felt like someone had switched on my fight-or-flight reflex and my body was responding accordingly. To take a few steps in my shoes, take a moment and just image a time when you felt really freaked out: a car accident, a lost child, an unfriendly animal approaching you, a natural disaster or a seriously scary roller coaster ride. That's what my dysautonomia flare-ups feel like.

So Saturday night I'd drift off to sleep only to wake up because of my pounding heart. Or worse yet, my dreams became tainted by my heart's hi-jinx and I started having nightmares where I faced perilous situations, which also woke me up. Every time I was awake, I tried to focus on my breathing or tried counting sheep or tried focusing on positive thoughts or tried to embrace stillness and calm. Unfortunately, my body would have nothing to do with it. I tried not to look at the clock each time I woke up. Unsuccessful in this attempt, I observed that I was up about every half hour.

After about 4 hours, the symptoms started to subside and I was able to really fall asleep. With Brunswick's CGC test, I could not compensate for my trouble getting to sleep by sleeping in Sunday morning. So only got about 4 hours of good sleep Saturday night.

Yes, I think it is time to talk more about dysautonomia this week and explore, among other things, how poorly my body seems to handle even small amounts of stress now.

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