Sunday, September 28, 2008

taking ME out of MigrainE

Richard M. Cohen, who is the husband of Meridith Viera (co-host of Today show), has had MS for the last 30 years and endured 2 bouts of colon cancer. He is the author of a memoior, Blindsided, about his experiences with his illnesses and is also the author of Strong at the Broken Places, a book about the lives of five people with chronic illness. He first came on my radar when I was watching The View last year as he was interviewed by the five co-hosts. I cried through Mr. Cohen's entire interview. The questions they asked about suffering with a chronic illness were insightful. His answers were inspirational. Mr. Cohen said he is not his disease. Out of everything he said, that was what stuck with me. You are not your disease.

I may not be my disease, but I certainly struggle a lot with my disease not intruding on how I view myself. My husband reminds me frequently that my Migraine, my NDPH (New Daily Persistent Headache) and I are not one in the same, but it is difficult to make that a regular thought process.

Since my Migraines and NDPH abruptly started October 26, 2005, my life has significantly changed. I frequently liken it to the death of the old ME. My Migraines and NDPH became the new ME. The old ME loved her job as a speech language pathologist serving three to five year old children with mild to severe disabilities. She worked long hours with dedication and loved to make those kids feel special. The old ME volunteered at a food pantry where I was an apprentice leader. Part of my job was to give food to those people who came in, but my favorite part was sitting down and listening to what was going on in the lives of these people who were hurting. I enjoyed praying with them and giving them hope. The old ME hung out with friends after volunteering, at church, after church and throughout the week. The old ME was a girlfriend and a fiance who gave as much to the relationship as she got.

All of us at one point and time has thought, when I die, I will really be missed. But, when someone passes away, life still has to go on. Eventually life returns back to a new normal. When my life was interrupted abruptly by Migraine disease and NDPH, my old life stopped, but everything proceeded without ME. My job was filled by a new speech pathologist. A new apprentice leader took my position as a volunteer at the food pantry. Friends who I saw at work, church and the food pantry slowly fell away. Acquaintances became non-existent. I lost friends. I was out of sight and out of mind. In my relationship with my then fiance and now husband, he became the caregiver and I became dependent. Everything changed.

My old self died. Some of that is good. I used to be a perfectionist. I used to have to be in control. I was extremely scheduled and had an unending list of things to do. I was actually a little obsessive compulsive. But, dealing with a chronic disabling illness, I could not be in control of most things and had to come to terms with that. I stopped having a schedule and became more flexible. Instead of a calandar of things to do, I would write down what I was able to accomplish after the fact. I had to change and grow. This part of the new ME that I like.

But, since my life has changed so drastically, it feels as though I have slowly morphed into my disease. Am I my Migraines? Am I my NDPH? Where as my life used to feel unlimited, now I am defined my my limits. My friends have stopped calling because they do not want to bother me if I am not feeling well. When I do communicate with them, their emails consist virtually solely of asking me how I am. I have to encourage them to share with me about themselves and actually answer my questions about what is going on in their lives. My husband freqently has to take care of the basic household chores I am responsible for because I am not able to accomplish them. We've even taken advantage of online grocery shopping, Peapod, because I have been unable to make it out of the house to run errands.

It is a very difficult task for me not to see myself as my Migraines. Whether or not I am able do the chores around the house such as laundry or cleaning is iffy. Whether or not I make the gamble and schedule an appointment is risky. Whether or not I dare to make plans to see friends is rare and if I actually make the date is even rarer. Everything is dependent on if I have a Migraine or my NDPH pain is elevated.

Who am I now? I know who I used to be. I liked that girl. I used to have the ability to serve others, to love on kids, to listen to those who were hurting and to pray with those who needed it. But, since the onset of my Migraines and NDPH, the focus became on ME. I could not give to others anymore. Others have to take care of ME.

I am still trying to figure it out. But, I know I do not want to be my Migraine. I do not want to be my New Daily Persistent Headache. I want to know who the new ME is.

I am left pondering Ecclesiastes 3:1-7
"There is a time for everything and a season for every activity under heaven:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace."

Wednesday, September 17, 2008

Cervical Facet Blocks: Undercover Investigative Report

***Please note, I have put together an updated overview of my cervical facet block experience. You can see that post HERE.***
Well, I was not undercover. The purpose was not investigative. But, I will report. Actually, the cervical facet blocks I received on Friday, September 12th were so that hopefully, I would receive some relief from the neck and back of the head pain I've been having. But, since I was nervous and a touch scared of the procedure, in order to get through it, I told myself I was an undercover investigative reporter. And here is my faithful report of everything I have learned about the procedure along with my personal experience.

A cervical facet block is also known as a facet joint injection and is similar to an occipital nerve block, but the injection is in a different location. The cervical facet block breaks down to this: cervical= neck, first 7 vertebrae of the spine; facet= paired joints in the spine that provide support and contain tiny nerve fibers; Block= block pain.

Basically a cervical facet block is where the physician injects lidocaine and a steriod (in my case, Decadron) into neck joints in attempt to decrease pain. The physici
an typically uses an X-ray to see where to put the injection.

A great illustration of bilateral cervical facet blocks is found HERE.

I have been having neck pain and back of the head pain since March of this year. My headache/Migraine specialist referred me to a physiatrist that specializes in neck pain. He sent me to a physical therapist. Physical therapy brought me minimal if any pain relief. So, my physiatrist scheduled bilateral cervical facet blocks at the first joint in my spine called occipito-atlanto joint which connects the base of the skull to the spine, between C1 and C2 (first and second vertebrae of the sp
ine) and between C2 and C3 (second and third vertebrae of the spine).

I arrived at the neurological hospital on Friday with sunglasses on. Not just arriving in style, but anticipating the migraine trigger-happy fluorescent lights of the hospital. I checked in at the registration desk, was directed to another floor and eventually my room. The nurse told me I would be taking a pregnancy test because they use a fluoroscope (x-ray) to find the joints during the procedure. I was also asked to change into a very fashionable hospital gown. The surprise came when I was allowed to wear only the hospital-issued socks under my gown! I
asked the nurse why nothing was to come between me and my hospital gown for a neck procedure. She said it was for anesthetic purposes. Germs are carried in on clothes.

An IV was started and I was given IV fluids for the 6 hours I was there. They did a bleed test where they pricked my skin to make it bleed and timed how fast it clotted. They also drew my blood for other tests. I was brought to the pre-op room and the wait continued. 40 minutes later, the anesthesiologist, the nurse and my physician all came to talk to me.

Every time I have talked with this physician, I feel like we are his back porch at a BBQ. He's very laid back, propping his ankle up on his knee. Yet, he explains everything very professionally and is an exceptional listener. He turned off the lights in the whole pre-op area because he recognized they might be bothering me. His calming nature diffused my nerves.

I was wheeled into the operating room and the nurse told me to lay on my stomach with my face in a sponge-like thing with cut out for my eyes and nose. They gave me oxygen via a nasal canula. My arms were at my side, I was wrapped up like a burrito and finally strapped to the table. I wasn't going anywhere. I felt like my IV was pulling and when I mentioned it to the nurse, the anesthesiologist said the medication might be stinging. That was the last thing I consciously remember.


My biggest fear about the procedure is that I would wake up during it. The nurse told me that I would be sedated enough so I would not know what was going on, but would wake if shaken.
The anesthesiologist said I would be taking a good snooze.

I do remember three things that happened during the procedure. But, it was not as though I fully woke up and two of the three remembrances probably happened as I was falling asleep or partially waking up. The first I remember was someone slathering my neck with
something. The second thing I remember was my physician doing something at my neck. The third thing was when I clearly heard people discussing an allergic reaction I was having after I was rolled from the operating table onto the stretcher. But, I did not wake up. I am assuming that is because they gave me IV Benadryl which probably made me sleep more.

I woke up in the recovery room. I was itchy and that is when the nurse explained about my reaction. But, she was not sure what it was to. I still felt very out of it, so when the nurse asked if I was ready to go back to my room, I responded with "I'm cold." I was actually shivering
and my teeth were chattering. She wrapped my head and put a heater on my lap. Later, when I woke up more, they wheeled me up to my room. I was shaky and not stable. But after eating a turkey sandwich, my first meal since the night before, I was feeling a bit better.

Oh, but did I mention, I was SORE! My neck and back of my head felt as though it had been ripped off. I knew I was getting needles in my neck, but oh my. We had to drive home in rush hour traffic, but thankfully the sedating medications were still having some effect. The next two days, I laid in bed all day and was kept up due to pain at night. I could only lay in one position because my back of the head and neck were hurting so much.

So, now, I'm 5 days post-procedure. My neck still hurts. I was told that the steroid could take up to a week to kick in. I'm still waiting. I will see my physiatrist on October 7th to debrief. Treating pain is quite an adventure. I'm definitely learning a lot in the process and I hope to continue to pass that along to you.

(In the picture of my neck, there are only 4 band-aids but I actually got 6 injections, the other two are higher up and towards the outside of my head.)

Wednesday, September 10, 2008

R-E-S-P-E-C-T

I joined the blogging world not knowing what it would mean for me. I have found the posts of fellow-bloggers helpful and insightful. I have learned so much and opened my eyes to many ideas I never would have thought of before. I also did not realize that there were people out there who could not RESPECT that people do differ in opinion.

In our struggle to understand our diseases, all people with invisible chronic illnesses, including those of us with Migraine, are trying to find out what works best for us. Whether it be medications, relaxation, biofeedback, acupuncture, chiropractic, counseling, crystals, meditation, prayer, physical therapy, exercise or diet, we all are searching how to best manage our illness.

When I joined the internet world, and specifically MMC forums, I found a host of people who are caring, loving and supportive, but who would also light a fire under my behind when I need it. I am so thankful for having these people in my life. The way I handle my migraine treatment has significantly changed for the better now that I know them.

However, these people, my internet family/friends, first earned my RESPECT, not by pushing their view on me and not by condemning me for mine. None of us has the answer to how to treat migraine the best way. So, we realize that we can discuss ideas, inform each other of new techniques, share suggestions and even agree to disagree. If your opinion differs than mine, I most gladly would like to hear it. I welcome suggestions from everyone because I certainly do not "know it all" about Migraine disease. However, neither do you. And once we both realize that and have mutual RESPECT for one another, we can collaborate ideas and find better treatment for ourselves accordingly.

Medications: A Love-Hate Relationship

I look forward to the day where medications do not rule the roost as much as my Migraines and NDPH do. Months of trial and error, dealing with side effects, and waiting months to even see if the new preventative I'm taking is effective makes this whole medication ordeal quite exhausting.

Medications and I have a love-hate relationship. If I have found the right medication to treat what is ailing me, it is like someone has flipped a switch in my body. I'm not "normal" by any means, but I am able to start to experience my life. For example, when taking Frova (an acute migraine medication called a triptan), my menstrual migraines are extremely decreased in severity. Finally, I do not have to experience weeks of unending pain surrounding my menstruation that keeps me bed bound any more.

However, the flip side is that I am extremely sensitive to medications. While Frova is a godsend, my body is very sensitive. It does not seem to like any medication that messes with my serotonin levels. So, at the end of 4 days of taking the medication, I experience mild-moderate anxiety.

Through trial and error, I have found that tricyclic antidepressants, SSRIs, SNRIs and most recently Zonegran induce severe anxiety and panic in my body. These medications are supposed to be helping my body, but my sensitive body revolts at ingestion.

Other medications such as Zofran (for my nausea) let me be. They treat my symptoms without raising any difficulties with unwanted side effects. Oh, I wish it were so easy with all medications.

I feel as though I am stuck between a rock and a hard place. How do I find the right medicaiton for my head if my body continues to revolt? It is a frustrating question for me to face myself, much less the parade of questions I get from those who love me and only want me to feel better.

I feel helpless being at the mercy of the medications. I have a rescue medication I vowed I would never take again because of the awful side effects it gives me. But, increased severity and frequency of my migraines this week (most likely because I stopped the Zonegran, a migraine preventative), it was my only option that I knew would halt the pain. I suffered tremendously from the side effects. But in those moments of severe pain, I will tolerate almost anything to make the migraine halt. It is basically survival mode. I have stopped living and I am only surviving.

I am currently in a holding pattern now. I have a cervical nerve block for the pain in my neck on Friday. And I see my headache/Migraine specialist on Tuesday. But, getting through each moment is a struggle.

And when I see my specialist and start my new preventative, it is hard to be optimistic. It is hard not to be scared of the possible side effects. Usually, I get them! This will be another trial in a list of unending trials. I wish I had hope enough to know that this next medication is the one. After suffering so long, it is difficult to muster up the hope. But, I will. Any change is progress. I tell myself that if this next preventative does not help or the side effects are too awful, it will be one step closer to discovering the medication that will help me.

I know this is only one part of my journey toward better management of my migraines. And, I tell you, I am ready to be done with this part.


September 2008 Headache and Migraine Disease Blog Carnival is up!

The September 2008 edition of the Headache and Migraine Disease Blog Carnival is up at Somebody Heal Me!

Generally speaking, a blog carnival is a collection of links to a variety of blogs on a central topic. The Headache and Migraine Disease Blog Carnival has been created to provide both headache patients and people who blog about headaches with unique opportunities to share ideas on topics of particular interest and importance to us.

This month's edition focuses on Doctor Patient Communication. Click HERE to link to the carnival.

Monday, September 8, 2008

Invisible Illness: Advice For Caregivers From a Caregiver

I asked my husband if he wouldn't mind sharing his experience what it is like sharing life with someone with an invisible illness and sharing some advice for others in his same position.

-How does having a wife with an invisible illness affect you?
"It affects me in how it affects you (Kelly) or frustrates you (Kelly) that people do not see."

-What is your advice for caregivers of people with invisible illnesses?
"Have patience and endurance and take care of yourself."

-What do you mean by "take care of yourself"?
"You need to realize that you do need time for yourself. You need to do whatever it is for you that rejuvenates you. Recharge, de-stress and do what you can to make time for those activities. There are sometimes when you aren't able to take time for yourself. But, you have to try to find a way to fit it in.
If you let yourself get to a point where you are running on empty, you don't have reserves for when it gets tougher. You need to be prepared for the times when it takes endurance."


-What are some examples of things that rejuvinate you?
"Volunteering at food pantry. Going to church. Lying on the couch and watching tv. Getting into my interests and having fun with that."

-What is your advice for other caregivers who come in contact with those who do not understand invisible illness?
"Especially for invisible illness, just remember that people probably are not going to understand, at least not right away. Patiently explain when they don't. They may care, but don't understand. It is easy to recognize when someone is in a wheelchair that a person is suffering because it is visible. Sometimes, I will tell people you (Kelly) are doing bad again and they will say "But she looked so good when I saw her." I tell them "she looked good, but she was toughing it out." Say things that let them know they may not be able to see the pain. Just be honest that yeah, you often can't see when she is suffering. Explain it plain and simply."

Special thanks to my husband, George, for this interview.

Invisible Illness: You Can't Judge a Book by its Cover

Those of us who have invisible illnesses know what it is like not to feel validated in our illness. The old adage, "You can't judge a book by its cover" certainly applies. One of the biggest lessons I learned since my migraines and New Daily Persistent Headache (NDPH) started is that you cannot really know what is going on in people's lives just by looking at them. If I had a built in band-aid on my head that showed up when I was migraining or having head pain, possibly people would see I am hurting more often then they think. I do not want attention for my pain, but understanding. Sometimes the pain that others do not see affects my decisions.

"But you look so good" does not apply. Why not? Despite how I am feeling, I want to enjoy my life. My pain is always present, but that does not mean I always want to focus on it. So, I smile and I am "up" despite how I feel or the effort it takes. A smile on my face does not mean that I am feeling okay. But it does mean that I want to attempt to enjoy my life. People with invisible illnesses want to live too, despite the pain. So what you see, may not be the whole story.

When people do not understand that we are hurting despite our invisible illness, when they judge our book by the cover, it is important to remind ourselves that it is an opportunity and take it as such. Often people do not understand the facts of our disease and that it may not be or is not visible. If I had a friend with an invisible illness, I think I would want to know about her pain so that I could understand more of what she is going through.

In conclusion, others may judge our book (our illness), by our covers (how we appear). But, it is ultimately up to us to educate our family, friends, peers, co-workers, neighbors and strangers by letting them know what is really happening.
















Friday, September 5, 2008

Reading "YOU: The Smart Patient" as a Migrainuer



If you have ever read any of the YOU books by Michael Roizen, M.D and Mehmet Oz, M.D., you are familiar with their desire to present essential information that is not diluted straight to their readers. Their approach is humorous in a way that helps you remember what you are reading. I am especially fond of YOU: The Owner's Manuel. If I had only had this book in college biology, I think I might've gotten an A.


Another fantastic book by the same authors, YOU: The Smart Patient, is an insightful read particularly because it is written by doctors for patients. While keeping an intellecutal yet humorous manner, they let their hair down and share insights on health care from their perspective. As a Migraineur, I found this book particularly helpful because although it is directed toward the general population, it contained nuggets of information that specifically informed my experience as a Migraineur. YOU: The Smart Patient also educated me on important topics such as alternative treatments and getting a second opinion.

Dr. Roizen and Dr. Oz emphasize the importance of "finding Dr. Right." They have a section on questions to ask a doctor's office when choosing a doctor and examples of answers they judge as "good" or "shaky". The following question they proposed may be helpful for migraineurs to ask of neurologist offices: "Which types of patients does the doctor usually see?" Using the author's example answers in context of Migraine, a "good" answer would be people who have similar health issues to you such as Migraines/headaches. A "shaky" answer would be people who have health issues that are not similar to you such as stroke or degenerative diseases.

Another question they proposed that would be helpful for Migraineurs is "Is the doctor especially qualified to treat patients with your condition?" Their suggestion is that a "good" answer would be affirmative with examples of how s/he is qualified by training or special certification. A shaky answer may be if they do not give any reason why they are qualified. For Migraineurs, it is important to know that the neurologists that we see are indeed specialists in Migraine/headache. For more information on what makes a neurologist a Migraine/headache specialist, check out this article: Migraine and Headache Specialists - What's So Special? by Teri Robert.

In YOU: The Smart Patient, the authors include a checklist on what to bring to an appointment. One item I thought particularly helpful was a tape recorder with a blank tape and fresh batteries. Even when taking notes, I still forget some of what my specialist says. A tape recording of my appointment would enable me to review my Dr.'s reactions to my symptoms & side effects, his
answers to my questions, his prescribing directions, and his reasoning for new medications. Of course they suggest writing down specific questions that you want to discuss ahead of time.

Dr. Roizen and Dr. Oz suggest asking questions every time your Dr. recommends performing a test (i.e. MRI or CT scan) and when s/he prescribes a new prescription. Though their suggested list of questions is long, some, key questions stick out, such as: "What is this for?" "Why do I need it?" "What can go wrong?" "What are common side effects?" and "How should I take this?"
An informed patient is a smart patient.

Making friends with your pharmacist is also recommended because they are a very readily available and knowledgeable source of information regarding prescriptions. And this book, in fact, is very informational about medications in general. Medications are listed with potential interactions. This is essential knowledge for Migraineurs because often we take more than one medication, which could potentially result in unwanted side effects.

On the sometimes delicate topic of getting a second opinion, Dr. Rozien and Dr. Oz say "Never think twice about getting a second opinion." "We can be wrong and we can be wrong a lot." Hearing a doctor admit they can be wrong is refreshing, but also gives more importance to the caution we need to take when thinking about the treatment we are receiving from our specialist. Perhaps it is time to push our doctor about considering other treatment options. Or perhaps it is time to get another opinion on treatment options. Sometimes more heads bring more and better ideas.

However, the authors did warn the reader that scam artists often swarm to and target those who have chronic health conditions, such as Migraine. If something sounds too good to be true, it probably is. They say to watch for "claims supported by unidentified studies or testimonials from people using phrases like 'it saved my life, improved my sexual performance, and buttered my bread, too." They also warn about treatments that boast curing unrelated problems such as dandruff and boosting short term memory. Getting a second, third and fourteenth opinion is sometimes necessary and helpful, but make sure to bring your thinking cap along.

According to these doctor authors, being a smart patient is being a smart detective, and as the anology holds, "no smart detective would hang his whole investigation on a single witenss's story without making sure it checked out." Investigate. Read. Question. Educate. This is how we can further our chances for finding the best Migraine treatment out there.

Another great chapter for Migraineurs to check out is the one on alternative treatments. The importance of sharing with your doctors all alternative treatments you are receiving is highlighted. Additionally, the authors expound on the differences between the alternative treatments in which Americans reportedly spend fifty billion dollars a year. The treatments discussed include the following: chiropractic, acupuncture, naturopathy, homeopathy, massage, hypnosis, supplements, vitamins and herbal remedies.

YOU: The Smart Patient has so much helpful information on these topics and others including surgery, hospitals and hospital stays, patients bill of rights and health insurance. The book is a must-read for all people who are patients (and who isn't?), especially Migraineurs.