Friday, March 25, 2011

Preparing For Battle

I have an upcoming surgery: Endolymphatic Sac Decompression Surgery on this Tuesday, March 29th. We are hoping that this surgery will relieve the disabling vertigo I have been having which seems to be caused by Meniere's disease. I have many concerns. I am not looking forward to major surgery or general anesthesia. Nor am I looking forward to having a hole drilled into my head. Hasn't my head been through enough?

But, I just read a passage yesterday that encouraged me. I was reading a devotional in a book called One Year of Hope by Nancy Guthrie. She shared Ephesians 6:10-18. It is a passage that discusses how we are to put on God's armor to protect us in battle. As my surgery has been approaching, I have been faced with so much uncertainty and great anxiety. Even though I have asked many questions of my neuro-otologist, spoken with a dear fellow blogger, Wendy, who has shared with me her experience with the surgery, researched it on the internet and actually watched a video of the surgery, I still feel very unprepared. I do not feel I know what to expect after the surgery happens. Will I be one of the people who recovers quickly and with little pain? Or will I be one of the ones whose pain goes on for weeks and recovery is slow? How will my Migraines react? Will I go into rebound because of the pain killers I'm taking for the surgery pain? I don't know.

But, reading Ephesians reminded me how to prepare for a battle. And, with my anxiety, I need a plan of how to prepare for the uncertainty and unknown of what happens Tuesday and beyond. So, here I will paraphrase the passage by writing how I will be preparing myself to face the unknown.

-Stand your ground.
-Put on the sturdy belt of truth
-Put on the body armor of God's righteousness
-Put on the peace that comes from the Good News
-Use faith as a shield
-Put on the helmet of salvation
-Take the sword of the Spirit (the word of God)
-Pray at all times.

What does this mean for me? I will lean on the strength of God to get me through. When I am scared, have doubts or concerns, I will remind myself of God's truth that he loves me. I will tap into God's peace as I struggle through. I will hold firmly to my faith. I will read the bible and my devotionals to keep me close to him and his thoughts. And I will pray at all times to get me through.

Wednesday, March 16, 2011

Another Severe Medication Reaction

My body has always been quite sensitive to medication. Over the years, my psychiatrist, Dr K., has always chuckled at the dose of anxiety medication I take because it is so tiny that almost no one would be helped, but me.

I wrote about my horrifying reaction this weekend to a medication Dr. R prescribed to attempt to help my vertigo.  At the same visit, we had agreed to increase the dose of my Migraine preventative, Gabitril. I was on Gabitril in 2009 for ten months, in 2010 for eleven months, and so for in 2011 for six weeks. With each trial, I had side effects in the beginning that were quite mild, but went away quickly. When I started on Gabitril agin this February, I did not have any side effects. So, on Friday at my appointment with Dr. R., we decided to increase the dose to one that is just a smidge higher than a dose I had been on for about four weeks at the end of my last trial in December 2010/January 2011.

I weaned myself up to the new Gabitril dose within a few days. Yesterday after my morning dose, I started to have symptoms that reminded me of how I feel during a Meniere's attack. I was having severe vertigo, and so I assumed that I was in fact having a Meniere's attack. But, as the day went on, the medication that helps resolve my vertigo was not helping at all. Because in my mind, I was experiencing a Meniere's attack, George and I focused on how we could best manage it. We were both concerned that the medication I take for Meniere's was not helping, but by the time he got home from work, I was okay enough that he was able to get me from the bed to the living room in a wheelchair. Until he came home, I had been unable to get up for food or even the bathroom.

This morning, I woke up feeling just horrid. I thought I was still experiencing severe vertigo from the Meniere's and treated it as I would when I have a Meneire's attack. But as the morning went on, it became clear that this was not just a Meniere's attack. I was having other symptoms that were scary. Again, I was unable to walk and I was severely uncoordinated. Before he had left for work, George had put a clean set of clothes next to my bed as I had been wearing the same set of clothes the last few days. It took me about 45 minutes to put on my clothes. My body would not listen to what I was telling it to do. I could not will my arms to go where I wanted them to go, so I was overshooting my target (i.e socks, shirt, feet, ect.). I knew I had laid a white ankle sock on my orange panted lap, but I could not figure out how to find it, see it or grasp it. My hands were tingly, partially numb and partially painful. I could not focus on the task at hand.  My vision was bad. I had bad vertigo which was making the world spin counterclockwise, but everything was blurry and no matter how hard I tried to concentrate on an object, I could not "see" it.

My cognition was horribly off. I could not figure out how to call George. It took me a while to figure out where the phone was and what I was to do with it. And when I was eventually able to call him, I found I was unable to make any sense when I spoke. He had to interpret my words. I kept crying because I knew what I wanted to say but I was completely unable to say it. I would say words that were unformed or distantly related or just jargon that made no sense. As a speech language pathologist, I have a new appreciation for what some of the clients I worked with must have gone through.

It was a terrifying situation because I could not be in control. I couldn't think straight enough to even have my  mind in control.  As my cognition was poor, it took me a while to even consider that the increase in Gabitril was the reason for all of my symptoms. And once I had the thought, communicating it to George was a problem. He eventually figured out what I was trying to say and he called Dr. R immediately. But before he called, I made him promise to take me to the ER if I did not improve or if I did not answer the phone. George said he felt strongly it was the Gabitril as all of my symptoms were possible side effects. However, he told me if there was any doubt in Dr. R's mind of whether or not it was the Gabitril, he would come home and immediately take me to the ER.  But, Dr. R agreed it was the Gabitril causing the symptoms I was having and I will be taking a much lower dose from now on. As I started to show signs of improvement, we figured it probably was the Gabitril and I did not need to go to the ER.

Thank goodness Gabitril has a relatively short half-life as I am better ten hours later. Of course better is a relative word. when I walked to the kitchen to finally get something to eat an hour ago, I ran into wall several times and spilled my apple juice in the middle of the floor because I was having to remind myself to keep holding the cup and I forgot. I also attempted to put the half gallon milk jug in the cabinet with the glasses a few times before I realized what I was doing and that it did not go there. My hands are still tingly and I am not able to type with the speed and agility that I usually can. I can focus better and read the computer screen, though I'm taking frequent breaks because as I'm still dizzy, it is an extra effort to focus on the scrren. Obviously, as you can see, I can now put words together. I'm still getting words mixed up, but as I revise and edit my posts obsessively, you won't find any evidence of that here.

Am I worn out? Yes. Am I stressed? Yes. Am I completely tired of everything that my body is being put through? Yes. Do I feel broken down emotionally? Yes. Do I feel depressed because I am stuck in my bed in my room alone by necessity? Yes. Do I feel anxiety that things get so completely out of control? Yes. Do I feel horrible that my even-keeled husband is so stressed that he has been crying every day the last several days because of his concern, sadness, and worry for me? Yes. 
BUT... I have hope that things will improve. I have faith that God is with me and is using these situations to draw me closer to him.  I do not have strength on my own, but I know who to go to to find it. I have someone to hold me physically in George, but spiritually in God. God isn't just this supernatural mystical being that I'm blindly following in hopes that he will make me better or heal me. Sure, I hope I get better, but I am not clinging to him because of that hope. I am clinging to God because he loves me unconditionally and promises to love me no matter what happens to me. He very real to me, especially in these times when I am confined to bed, cannot move and cannot speak. He's inside of me comforting me and giving me what it takes to persevere. I have fight in me that I will not let go of. I will keep fighting because I know that God's plan for me is greater than me.

So, yeah, this has been a really crappy time. But, storms do not last forever and I know the sun will come out soon.

Monday, March 14, 2011

Phone Call Follow-Up From My Headache/Migraine Specialist

This morning, George called Dr. R. Usually what happens when we call Dr. R's office is that the nurse or receptionist who answers the phone takes very detailed notes. We are usually detailed in our messages and we can tell they are writing everything we say down because there are long pauses and questions of clarification. 

Let me go on a tangent here and say just how much I love and appreciate Dr. R's staff. One staff member has been there for nineteen years. After nineteen years, she knows a lot about headache/Migraine and the same is true for the rest of his staff. When many Migraineur's experience frustration simply with their neurologist not being up to date on the topic of Migraine and headache, it is refreshing to encounter a staff who are educated and have great compassion. As I have seen his staff almost every month since December 2009, I have gotten close with them. They are some of the most caring people I know. They remember what is going on with me from visit to visit without looking at my chart. Every visit, they ask about my mom who went through and survived a battle with stage 3 colon cancer last year. I receive random phone calls from them where they are calling just to check in with me, find out how I'm adjusting to new medications, or just to see how I'm feeling. I get told to call if I ever need anything. I appreciate that they are different than any other doctor's office I have encountered. But, I digress.
Usually when George or I call Dr. R's office, they take the message, speak with Dr. R and the nurse/receptionist calls George or I back to let us know Dr. R's response. George called this morning because I was very sedated from medications I've been taking to manage the side effects. When Dr. R got the message, he called George back himself. He clarified that I had that terrible reaction to just a quarter of the pill. George confirmed this was the case. Dr. R basically said that he will avoid any medication of that class in the future.
George mentioned that I had not had good experience with other medications in this class of drugs. George said Dr. R acknowledged that he was aware of this information, but was genuinely surprised I had such a horrid reaction, as the medication I took on Saturday is much milder than other medications of that class, and that I was starting at a mere one tenth of the regular starting dose.  George said he could tell that Dr. R genuinely concerned and  cared that I had such a reaction. Dr. R even said he was "sorry about that".

Maybe it is because I'm emotionally labile from everything I have gone through the last several days, but it made me cry to know that Dr. R cared so much to personally speak with George, to get more details and to express his concern for me. I would expect most any doctor to be concerned, but I am moved that he that he apologized for his part in prescribing a drug that had such horrible affects. 

Currently, I am still having quite a bit of medication-induced anxiety from this drug, some difficulty concentrating and milder confusion. My body also must be quite worn out as I'm sleeping a lot and kind of "out-of-it". In my last post, I mentioned this medication's half-life is 96 hours. However, I was mistaken: it will take 75 hours for half of the medication to get out of my system. Although, for people who have difficulty metabolizing the drug it can take up to 144 hours for half the medication to get out of their system. I'm rooting for the smaller number! :) If you are not familiar with half-lives of medications, even for people with a normal metabolism, this drug has a long half life compared to most medication half-lives and it certainly has a longer half-life than any in its pharmaceutical class. To compare to other medications you may be familiar with, the half-life of Topamax, a common Migraine preventative, is 21 hours. The half-life of Gabitril (my current Migraine preventative) is 7-9 hours. I am staying positive and hopeful that I won't be dealing with any bothersome side effects much longer! 

Cervical Facet Blocks Overview: One Patient's Experience

The statistics of my blog show that by far the most viewed blog posts are ones I've written on cervical facet blocks apparently because people's Google searches are bringing them to my blog. So, I thought I'd write an overview post where you find all the information I have written on Cervical Facet Blocks in one place. Please follow me through my journey that started two and a half years ago.

I have had Migraines since October 2005, but I started having neck pain in March 2008.  In my post on Wednesday, September 17, 2008  Cervical Facet Blocks: Undercover Investigative Report, I described how my first set of blocks went, explaining every detail of the procedure. I described exactly what cervical facet blocks are and provided some helpful diagrams. So if you are looking for a good description, please see that post. I was sedated for my procedure, but I know of many people who are not sedated.

In my post on Thursday, October 16, 2008 Update: Cervical Facet Blocks I gave a five week follow-up report. The pain from the injections had lasted seven days and I only had a few weeks of relief.  I discussed how my physiatrist had mentioned that Migraines and neck pain could affect each other. He said that I may have a continual battle with my neck because my neck is holding up my head, the source of my Migraines. Supporting a hurting head can cause neck tension and pain. This is something important to remember as my story continues.

In my post on Tuesday, March 24, 2009  March 2009 Update on Cervical Facet Blocks, Nerve Blocks and Botox, I described how in the weeks following my December 2008 injections, I had about a month of relief with my neck pain but also decreased frequency of Migraines and decreased intensity of my chronic daily headache pain.  However the relief did not last through my menstrual cycle which triggers nasty Migraines.  I had another set of injections at the end of January 2009 and the decreased pain lasted through March 2009. 

In April 2009, I scheduled another set of injections for June 2009, but I kept postponing them and then finally canceled them. The receptionist asked why I would not be rescheduling and I said, "Because I feel better! I don't need them." In March 2009, I started a new Migraine preventative, which has brought me good Migraine management off and on since then. From March 2009 until January 2011, I did not have any occipital or neck pain. Then, when I went off of my Migraine preventative in January 2011, I started having neck pain again. I want to refer back to what my neck physiatrist mentioned at my appointment in 2008. He seemed to think that neck pain and Migraines are intertwined. When my Migraines were better managed, my occipital pain/neck pain was better managed. Insightful. Maybe the key to occipital pain/neck pain relief is better Migraine management. At least that was true in my case.

My current Migraine specialist treated my neck pain with Botox injections February 7th, 2011. It has been too long since I've had the cervical facet blocks to compare which helped more. Botox has been an extremely helpful tool in treating my Migraines. As far as treating my neck pain, I would rather do Botox injections because they are much much much less painful than cervical facet blocks.

I hope this overview is helpful. If you have any questions about my experience big or small, please ask! This post is meant to be about my experience. As each experience is different, your doctor is the best person to consult about questions specific to your case.

March Headache and Migraine Disease Blog Carnival

Headache and Migraine Disease Blog Carnival on Life Hacks: Tweaking Work and Life to Deal with Migraines is up HERE at No Extended Warranty.
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Sunday, March 13, 2011

When Medications are Dangerous: My Weekend

I saw my headache specialist, Dr. R, on Friday. Since 2001, he has been given the honor of being named one of America's Top Doctors in his specialization by his peers. He does not take insurance. He is heavily involved in research in the Migraine field. With other headache specialists, I always had my guard up, always second guessed, always questioned, and always talked something to death if I was uncomfortable with it, which is what a smart patient should do as I discussed in Reading "YOU: The Smart Patient" As A Migraineur. As Dr. R is the fourth neurologist  and third headache specialist I have seen, I know how different he is from the rest. He is a cut above. His manner is professional, but extremely compassionate. He is knowledgeable and always seems to have a new treatment idea up his sleeve. He educates his patients, in office, with handouts, through his website where he posts the latest research, and through his doctor's blog.  I do not trust doctors as a rule, but in the year and three months I have been a patient, Dr. R has gained my trust.

At my appointment on Friday, I forgot one important thing. Dr. R may be one of the top Migraine/headache experts, but he is not the expert on me. I am. When I sat down in front of his desk on Friday with George, we engaged in conversation, and went over my typed outline point by point (which includes a summary of my symptoms, details and questions). As we talked, he recommended a medication for me to try.

Let me preface this by saying, I am extremely sensitive to medications. The road to finding that out has been a scary one. It started with my first neurologist who tried me on two medications that caused me to have panic attacks and to be suicidal. The neurologist thought I had some sort of mental illness and when I went to a psychiatrist, the psych took me off the medications and the side effects resolved. I wasn't mentally ill; my body simply could not tolerate the medications.  I learned the valuable lesson that I need to do my own research and keep my own records. I even bought a Nursing Drug Handbook and now when I start a new medication, George and I read any and all possible side effects together.

Five and a half years and more than 60 medications later, I have had my share of bad reactions to medications. Going into my appointment with Dr. R on Friday, I knew all the medications and classes of medications I cannot take and why. But, for some reason, in a moment of stupidity, I forgot that I know myself better than any doctor, even one as knowledgeable as Dr. R. He suggested a medication and I felt uneasy about his plan, but because I have so much trust in him, I did not question him or speak what my gut was saying. My gut was screaming: "This is a horrible  idea!" I have tried three medications in the same class of medications he recommended. And each medication gave me some sort of horrifying effect: hallucinations, panic attacks ect. But, for some reason, I did not speak up. The fact that he had prescribed an extremely tiny dose was of some comfort to me. So, Saturday morning, I woke up and took the sliver of this medication. To give you an idea of it's size, here is a photo:

Top pill is the size I took (roughly a quarter of the middle pill). Middle pill is the size of the pill I quartered (smallest dose this medication comes in). Bottom is the size of my mulit-vitamin just for size comparison.

My body revolted. To date, this was the scariest reaction I have ever had to a medication. Sure, I had milder side effects such as nausea and hot/cold flashes and more severe side effects such as, I remember when my feet started tingling; later I was unable to will my arms and legs to move. As the medication started to peak in my blood stream, the torture began. I only remember bits and pieces of what happened. So, what I am telling you is mostly from George's perspective. He says I lost touch with reality. He says I screamed most of the day: a "tortured scream." George says I was confused and kept asking where I was and who he was. My words were jumbled. I was hostile. I was yelling at and hitting him. I was threatening to kill myself and I told him I would if he left me alone. He believed me. I said someone else had taken me over. I have vague recollections of feeling like I would be present and then someone else would step in and I have black parts in my memory.

George called Dr. R's office, but they were out of the office and do not have an answering service. George has since told me that when he mentioned the ER, I got more violent. I am not surprised. I am not a fan of the ER or the doctors there, but that is for another post. George gave me medication that calmed me enough to sleep fitfully through the rest of the "peak" hours and he did not end up taking me to the ER. So, to sum it up, the sliver of this tiny green pill did not agree with my body. As the half life of this medication is 96 hours, I am still suffering the side effects but in a not as severe as yesterday.  I feel like someone is inside of me, running on a treadmill. I still feel agitated. I did not sleep but a couple hours last night. I sometimes get confused. My anxiety level is through the roof.

What did I learn? Trust my gut. All the way home from our appointment on Friday, I told George how I did not want to take the medication because of my history but was willing to try it if it would help. And we both thought that the dose was so small, if I got any side effects, they would be mild or at worst case moderate. We had discussed me not starting the medication until Monday so that I could enjoy my weekend with George. However after reading the list of potential side effects, we ultimately decided it would be safer if I tried it while he was home as a precaution because of the reactions I had to the three other medications in the same class of drugs. I am so glad I did. If I had taken this medication on Monday, I can say almost for certain that I would have died at my own hand under the influence of this medication. I say this because I have black parts of my memory of when George said I was threatening to kill myself. He is shaken by this as he feels that had I taken this medication when I was alone, I may not have survived the side effects. I am sure there are people who may think I am being dramatic, but I am not. And I'm sharing this scary event so that others might learn from my experience.

The lesson here for me and for anyone who takes prescription medication is to research, read, question and trust our gut.  As I described earlier, I am a good communicator with my doctors and usually very conscientious, but on Friday I failed myself. I should have asked more questions and I should have discussed more of my concerns about the reactions I had to other medications in this class. I read the black box warnings on this medication that it can increase the risk of suicidal thinking and behavior, and I'm glad we heeded that warning by having me take the medication with George present. Migraineurs tend to come in contact with many medications because the process of finding a preventative and even abortive and rescue medications is trial-and-error.  We can't know how our bodies will be affected by each medication as side effects listed in nursing drug handbooks or leaflets from our pharmacies are only possible side effects. Therefore, we must not let our guard down and must be diligent when it comes to taking medications..

Please read this important article by Teri Robert on medication safety. I just re-read it, and I am glad I did. 11 Tips for Using Migraine Meds Safely

Thursday, March 10, 2011

Friendships Within and Outside of the Chronic Illness Community

I was reading a post, Change: Life Since Accident, by Jamie at Chronic Migraine Warrior that made me think about friendships in regards to chronic illness. She wrote that since her life-changing accident, one of the aspects of her life that significantly changed was her relationships and specifically that her relationships with her friends were "strangely absent."

I found this to be true in my experience too. At the onset of my disabling Migraine disease, there was this rush of support from both family and friends. Friends from work, friends from places I volunteered at, friends from church, and my close friends called, texted, and asked what they could do to help. My first hospital stay for Migraines in early November 2005 lasted four days. I received a multitude of cards and gifts. I was visited by my supervisor from my job, my mom, my dad, probably about eight to ten friends, and my then fiance/now husband. Then days turned into weeks, weeks into months, months into years. Five hospital stays later, I was in the hospital for two weeks in October 2009. George, my husband, was the only one to show up. As it was my sixth hospital stay, I did not need nor did I want my parents to drive all the way up from Kentucky to visit. But, I could have used a visit from a friend or local family member. Sure, people commented on my Facebook status, but really, how hard is that? I guess it is better than nothing...

Life threw me a huge curve ball when I realized that I was losing friends because of my chronic illness. I wasn't in the places I used to be that cultivated those friendships: work, volunteering, church, small group, going out and parties.  Even though, I tell myself, I would not forget or leave a friend who has been suffering no matter what, I cannot expect that others would respond how I would respond. So, I have learned to lower my expectations and accept that my friends have limitations. And over the years I have learned not to blame my lack of connections on my friends. Henri Nouwen says very beautifully in Bread for the Journey,
As people who have hearts that long for perfect love, we have to forgive one another for not being able to give or receive that perfect love in our everyday lives. Our many needs constantly interfere with our desire to be there for the other unconditionally. Our love is always limited by spoken or unspoken conditions. What needs to be forgiven? We need to forgive one another for not being God!

Having disabling Migraines and Meniere's inherently presents problems in maintaining friendships. While my friends without chronic illness have other limitations that affect our friendships; my illnesses are some of mine. When my Migraines or Meniere's symptoms are severe, I am unable to interact with anyone, inclulding my husband, George. When my Migraines are more moderate, it is extremely difficult for me to have phone conversations or in-person conversations. They wear me out and I "pay" for them later with more intense pain and fatigue.

I try to step out of my shoes and into my friends shoes and realize that it is difficult for them too. They do not want to "bother" me. Many say they don't call me because they don't want to bother me with a phone call despite my reassurance that I will not answer the phone if I am not able to and I love getting voice mails. And I imagine after many unanswered phone calls, they may feel they are being ignored or are unwanted. It is complicated.

I find that friendships with others who have chronic illness are somewhat easier than having friendships with those who do not. Friendships with those who are chronically ill require patience, understanding and persistence. And when you are chronically ill, you are more prone to have those qualities in interacting with someone else who has chronic illness because you "get it." We check up on each other and we don't take offense if the other does not get back with us. I have found my friendships with others with chronic illness at times to be more authentic than my friendships with those who are not chronically ill. We usually are more honest with each other about the issues we are facing and how they affect us. We usually go into the details of how we are managing our illnesses and share helpful strategies with each other. We also tend to know what to say or not say when the other is going through a particularly difficult time.
A friend loves at all times and a brother is born for adversity. Proverbs 17:17

I have formed relationships that are as close to me as family with my friends who have chronic illnesses. I do not have any biological sisters, but I have many sisters in the chronic illness community. Adversity has draw us close together. Though these friendships bring me much satisfaction, most of these sisters live in other parts of the country. I wish I had more close friendships with people who lived near me who are not chronically ill. I have had five and a half years practice and I am still trying to figure out how to maintain friendships with those who are relatively "healthy" and lead relatively "normal" lives when I don't live a "healthy" or "normal" life.

How do you maintain your friendships with those who are not chronically ill?