Discouraged

I don't even know where to begin. All I can say is, I am very discouraged with people, doctors, myself, my body, etc. I wish people would take the time to understand what is going on in my life, instead of placing judgments. There are only a couple people that understand what I am facing and fighting everyday. Some think I run and take meds for every little thing. Some swear I am a drug addict. Some think I am dramatic. Some tell me it is mind over matter. Some say "you just need to get out more". I can't even begin to tell you  how often I hear, "all you need is water and an ice pack", as though it is some miraculous cure. REALLY? Don't you think that I would have tried water and ice pack by now, it's not like I've never had a migraine, I suffer from them daily. I have tried several "things that are guaranteed to ease your migraines, both Eastern and Western Medicine".  It is is easy to judge and share your cure all for every ailment when you see things as you choose to see them, instead of taking the time to learn from me what I am going through, what I am facing, what I am fighting on an on going daily basis. I am not a drug addict, I am not even close to being a drug addict. I take as little meds as possible. I know all about medication overuse headache. I do not turn to drugs/medications as my first line of defense, contrary to what many believe. I meditate. I do daily stretches. I listen to music. Music is a great treatment for me, it calms me, soothes me, brings me back to that one breath (meditation).

I didn't ask for this, nor would I wish this on my worst enemy. I didn't ask for this, but I do all that I can to make the best out of a very dire, scary situation. I am in this dismal abyss where I have no clue what I am up against. I am not a lazy person. I like to be productive, do the best in all that I can, work hard, and always look for ways to help others. I am not a selfish person. I do not like to be center of attention. I am quiet and stand back, away from large groups of people because it overwhelms me, and all the different scents of people in a large group can really get to me. Smells are a big trigger. Any kind of mint is a huge trigger, so I avoid a lot of big social functions because so many people are chewing gum. The smell gets to me, the sound drives me crazy, both of which are big triggers for me. Peppermint oil may work for some, but not me. Peppermint makes me so sick. I have social anxiety. I hate small talk!! I would rather have meaningful conversations with a person then spending a few minutes with the awkward small talk.

 I keep quiet, usually. I try not to make a big deal. I don't want to hurt anybody's feelings. It is hard for others to understand because they don't go through this day in and day out. I am 35 years old. I have not been able to work for over a year. I can't take care of my own needs on many days, let alone my family's need. The guilt and grief that entangle me because I can't do or be the person that I want to be and once was because of severe, debilitating pain, nausea, vomiting, muscle weakness, cognitive dysfunction, bladder dysfunction and so forth. Think of how frightened you would be if out of the blue your cognitive function changed. You know what you want to say, but you can't say it. You start to stutter a lot. You go completely blank in the middle of a conversation and when you come back to the moment, you have no clue what you were just talking about. Think about how you would feel if you were once a very intelligent person, that could remember nearly everything, to becoming a person that can't remember the conversation you had five minutes ago. Would you be frightened if  your body could no longer do the things that once came so easy to you, such as walking? Would you be scared and concerned if the medical team told you, you were a zebra and they had no clue what was going on? Would you hate it if you couldn't pee by yourself, but had to rely on a catheter to empty your bladder? Would you be scared if your identity was drifting further and further away and nobody could figure out what was going on? Something as simple as lifting your leg up off the floor, and you could only lift it about 1 cm? Think how you would feel if you were living in fear and guilt that you can't be there for your family and friends the way you want to be. How would you feel if you were slowly losing your independence, i.e. unable to shower without somebody right there to help you to make sure you don't fall, relying on others to drive because you can't. You can't drive because your leg goes numb at random and the double, blurry vision doesn't help matters.

Do you know what it is like to lose yourself? Do you know how hard it is not to be able to do the things that you desperately want to do? Do you know how scary it is when your body goes numb, especially when it is your  legs that go numb and you fall.

I wear my brave face, but I wonder if I am doing myself a disfavor by "being brave" because people may interpret my brave face as  a person that is doing just fine, a person that uses "migraines" as an excuse to get out of things. Were it up to me, I would not have migraines, I would be able to pee by myself without having to put a catheter in my bladder to drain my urine, I would like to shower without feeling like I ran a marathon by the time I am done. I would clean my house and do my laundry without succumbing to fatigue and weakness. I would make dinner for my family with energy, not burning it. I would spend more quality time with my girls. I would be able to go to a job that I truly miss and grieve that I cannot be me.

Why don't you try making it to the end of the day, for at least  a week with spoons left over. Try to figure out a way to keep moving when you have used up your supply of spoons and the day isn't over. Truly put yourself in my shoes, or any other person's shoes that are fighting like hell just to make it through the day. Life goes on regardless of the level of pain you have. Try keeping a positive, upbeat attitude when you can feel your body giving way.

I have no clue what is going on. I have seen several specialists. They are working together as a team now, yet we are no closer today than we were a year ago. All I know is that I keep going. I wear my brave face. I shed a lot of tears. I grieve. I mourn. I hurt. I keep going. So when you get a migraine that is so debilitating, go stick  your feet in hot water, with ice pack on back of neck, green drink in one hand and essential oils in the other and see for yourself if it works for you. Remember, what works for one, does not work for another. What triggers one migraines, does not trigger another's migraine. What works as treatment for one migraineur, may not work for another migraineur.

You truly want to help? Help raise awareness for chronic migraines so more funding and research can be done to learn more about migraines, what causes them, wha, if anything, can be done to cure migraines. Don't be so quick to judge. It's easy making judgement when you have no clue what challenges  .

Medical Zebra

In the past  month I have had two doctors tell me I was a zebra, I had no clue what that meant. I learned a little snippet about it, from a friend of mine and I googled "zebra patient", indeed the term zebra is used when doctors can't figure out the cause. There is even a foundation, Immune Deficiency a Foundation--Zebra Zone. www.primaryimmune.org In medical school the docs are trained to focus on the common signs/symptoms of ailments. There is a saying that goes something like "if you hear hooves look for the horses, not the zebra". The zebra is a patient that is very complex that they can't figure out what us going on. Doctors often shy away from the zebra, not because they don't care, but if they have to do research, it is in their own time and they don't get paid. When you see them at their office, they get paid the moment you check in, doesn't matter if you are there for 10 minutes or an hour. But you can't go to the doc office and expect him to research for you, especially if there is a waiting room full of patients. It is recommended to be proactive, and then go to your doctor to discuss your findings, possible diagnosis, and any questions or concerns you have. 

My former neurologist called me today. She read an article that made her think of me. She told me she was very happy I was seeing Dr. Hoesch. She was going to send him a message in regards to what we discussed. She wants me to go get labs drawn for Pompe Disease, which is not something they normally test adults for. It is usually diagnosed in childhood. It is an inborn error of metabolism disorder.  So, I will go have more labs drawn and cross one more possibility off the list. It is comforting to know that they care enough to think of me when they read articles and attend conferences, but on the other hand I wish I were a horse so I knew what I was up against.  I am glad there are no hard feelings and that there is a team of docs working together to try and help me. 

Grateful!

It is late. I should be sleeping. Instead I am sitting down stairs in my Grandma JoBerta's former chair, listening to my soothing music, soaking in the quietness and peacefullness of my home, and blogging AKA putting my thoughts in writing.

At this moment, I have so much to be grateful for. I suffered for weeks with the worst, debilitating migraine I have ever experienced in my life. I tried my usual abortive medications, Aleve & Axert (a triptan in the Imitrex family). I keep track of headaches, numbness, number of times I had to cath that month, etc. My second abortive med combo is Phenegran and Benadryl (more details in upcoming post). I just counted, I suffered for 28 days with my pain at a 9 or greater. There were days the pain was so bad that I really wished that I would die so that I would not have to hurt anymore. (I was not suicidal, nor did I ever have the thought of taking my own life). I just knew that I was in agony and I cried out in pain anytime I had to move. I passed out frequently, whether from,  nausea, movement, or any number of given things. I feel like the blue puke bag has become a permanent part of my attire.  I was a burden to my husband, children, sisters, friends, etc. 
 I have become an agoraphobic that only comes out for my doctor appointments. If I am not at a Dr. appointment, I am home. I keep a lot of the blinds closed because the sunlight is too bright and hurts my eyes. My neighbors think I am cuckoo, because they never see me.  I can be found in one of two places: Grandma JoBerta's chair or my bed, if I am not you might have luck finding me at some doctor's office between here and Timbuktu!😊

My doctors ask me if I am depressed. Yes, I am depressed, but I am not depressed because of depression. I am depressed because I suffer, I hurt, I don't live with an ideal quality of life, but I continue on. There are days I don't think I can do it another day, so there are times I take it literally minute by minute.

I never know when I will have a good day, bad day, mediocre day. I don't get the privilege to plan my life. I hate it. If I try to make plans ahead of time, I have to cancel, frequently, because my body controls my life. Migraines are the boss. Sometimes I can win, but most of the time, the migraines win, and not in a good way. I can't move, the slightest movement causes so much pain. My hair hurts. I can't pee. I get dizzy. I spend a lot of time with my face inside the blue puke bag. I burrow under the covers, cover my eyes, put my headphones in, with relaxing music that doesn't aggravate the migraine further. I cry. Pain is so intense, I can't breathe. I am short of breath. My resting heart rate is in the 90's to 100's. At any given moment any part of my body can go numb. It is ok if my face or arms go numb, but when either one or both of my legs go numb and I fall, then it's not so good. Last week, I had two very bad falls from my left leg going numb. I've got the bruises to remind me.

I try not to complain, even when I am so miserable I still say "I'm o.k., it's fine". I try to be strong. Last week was the first time that one of my girls have told me they hated me because of my stupid migraines, and she can't do things because of my migraines. I already feel guilty, and man did this just make me feel so much worse. The last thing I want is for my girls to end up hating and resenting me because I was sick all the time. I do everything I can to be there for them.

Friday I had an appointment, for Rick drove because he is the chauffer when he is home. I asked him if we could stop at Sam's really quickly so I coukd get more ribbon for my label maker. After we left Sam's and Rick asked me where to go next. I told him nowhere, let's just get home. Then on a whim, I silently said or you could take me to get my nails done. I wasn't paying attention to where we were driving. I look up and am like where are we going? He told me he was taking me to get my nails done. And he did indeed. I now have sparkly pink, shellac nails. When he came and picked me up, he brought me flowers. Now that right there shows you what a great husband I have. I can't believe he still loves me after all the hard ships I have put him through. Not a day goes by that he doesn't do or say something to tell me he loves me. 

This past weekend was Savannah's dance competition, and I was so worried that I wouldn't be able to make it because of my ailments. I went to bed Friday night with a moderate migraine. I took aleve and two extra strength tylenol when I went to bed. I prayed that I would be well enough to be there for here. My prayers were answered. Rick did not work that day. So he drove Savannah and I to her competition and then drove Mallory to her tumbling class and then mandatory dance rehearsal. Rick and Mallory came to the competition in the afternoon. I kept catching myself crying throughout the day because I was able to be there, and actually be a help to help Savi and share in her joy and excitement. I had moderate pain all day, but I can do moderate pain. I will take moderate pain any day over severe, debilitating pain.

After the competition we came home and watched Ferris Bueller's Day Off. We were a family. We were together. We were happy. And oh, it was wonderful. I just wanted to freeze the clock for a few minutes. I just kept thanking God for letting me have this day with my family, for helping me to remember what life was like without debilitating pain. Saturday was pure bliss!

Sunday came, and I was scared that I would pay for Saturday, and my body was in pain. My body was in pain, but I had no migraine. My muscles were sore, and my back was tender, but I took it. My sister came down to my house and cut and colored my hair. I am so grateful for Mysti to take the time to drive down here and her willingness to do my hair at my house. Thank you Mysti, I know that was no easy task.  She cut so much hair off, and I can't even explain to you how great it felt. The pain, from my hair, on the back of my neck was literally lifted. 

This was the pile of hair that was cut off. I have very thin, very fine hair and I was shocked when I saw all that hair! 

Right side view.

Left side view.

Top, back view.

Front view.

I love my new shorter haircut. Thank you so much Sissy Joe.  M

It was a beautiful day outside, the girls played out there most of the day. I was able to get some of my house cleaned and organized. I was able to accomplish a lot and it felt great.

I woke up this morning and had a migraine coming on. I took Aleve and Axert and it stayed at bay. I went to a neurologist that specializes in the bladder area, because my neurologist was hoping that he might be able to shed some light on my dysfunctional bladder. He comes in and as he's reviewing my history, he tells me that I am a mystery. I am a zebra, and he says "I know I am not the first doctor to tell you this because you have seen some very intelligent doctors. I'm stumped!" Thank you, I said. So, for now, his plan is to try and retrain my bladder. I have to go on a set schedule around the clock, if I can't void on my own, then he wants me to cath to see if there is anything. I have to keep a detailed record of my intake and my output. So I said, "basically I get to be my own nurse and keep track of my I's & O's". He said yes. He wrote out a plan, which includes going to physical therapy. My first appointment is in March. He wanted me to come back in 4 weeks, but he said to call him sooner if this plan was not working.

Lastly, my sweet dog, Ozzy, knows when I am getting a migraine or when I am not doing well. He will not leave my side. If Rick isn't home and I am not doing well, he paces back and forth. As I am typing, Ozzy is lying right next to me. He went up to bed three times and three times he came back downstairs to check on me. He finally decided he was sticking to my side until I went to bed.  He keeps looking at me. I have a migraine that I am trying to ward off. Between the time of the month, storm moving in and all the house work I have accomplished the past few days, are a great brew for a migraine. I am going to bed momentarily, but I just had to share my gratefulness for the past three days. I felt human. I needed it. It rejuvenated me and has given me the strength to keep fighting. I grateful for my husband, Rick, my four girls, my bestie and her hubs, and the rest of my family. As I type this last sentence, the song I want at my funeral is playing. It is "She Can't Be Really Gone", by Tim MaGraw.

Good night all. I see that a lot of people have read my posts, I would to read your comments, so please feel free to leave comments. I need to know that I have cheerleaders out there on the days that I am not doing so great.

This was a week ago. I am so grateful that I have had three "great" days. It is amazing how much difference even one good day makes. It gives me the strength and the courage to keep dancing!

Photo of Mallory and I the day I had to go to LDS hospital for "migraine cocktail" that consisted of magnesium, solu-medrol, phenegran, and toradol.

My dear sister, Rusti, sent me this one day, and I absolutely love it.

Sweet Ozzy, who is 14 in human years. I told him he can never leave me!!

P.S. Please know that I use a lot of humor and sarcasm to cope with all of this. My bestie and Savi have helped me tremendously, so when you see odd pictures of animals and such, please know there is an inside story to it, and it is guaranteed to make me smile and literally laugh out loud!

The ups, the downs and the fear of what lies ahead.

This has been a really rough week for me, only because I feel like I am getting worse instead of making a little progress. Earlier in the  week, my left leg went completely y numb from hip to toes. I was trying to get the school room (room designated for girls to do homework, free from distractions) picked up a little bit. I was hanging a calendar on a bulletin board and when I stepped away, my leg went numb, with no warning. I fell backwards, landed on containers that I was organizing, and I finished it off by knocking into the easel and falling to the ground. It was so loud, but my husband and girls say they didn't hear it. The dogs did, they were barking incessantly. This happened within minutes of everybody going to bed.

I just laid in there on the floor for a few minutes and attempted to get back up. I seemed o.k. I had to go downstairs, and after I had gone down about 3 stairs, my left leg went numb again. So I fell all the way down to the bottom. I was on my back and my head hit a couple stairs. I made it to the recliner, Mallory came down because she heard it. She went and got Rick and he came and helped carry me to bed. 

This picture makes me look so creepy, I have no make-up and keep my hair tied up because it hurts when the hair moves and rubs on my forehead.

I made it to bed, and I ended up sleeping until noon. I did not wake up once to use the restroom throughout the night. I didn't feel the urge to go, but I tried anyway. I couldn't not go on my own so I straight cathed. I got 850 ml's of urine. 

My body was I extreme pain from head to toe. I could barely walk and if I had an axe, I would have highly considered using the axe. 

This saying can be applied to bad weeks, months and years. There are days that I literally feel that I can't make it one more day, but somehow I find the strength to make it through one more day. 

I feel horrible that I am consistently in bed trying to find strength to heal and have the ability to care for my beautiful girls.

So far, we had made many sacrifices so the girls can stay in dance. They love it so much and it will tear my heart out if they cannot continue doing dance because of financial obligations. I will do whatever it takes, but I have told the girls that dance might not be an option next year.

Having an invisible illness causes others to think, "but you don't look sick". Maybe I don!t look sick because I have my brave face on  and try very hard to smile and act like I am feeling ok. I don't want pity. I don't want others to think I do this for attention. I try to smile and be as brave as I can. 

This has not been an easy year for us, but we keep dancing forward.  If my suffering is able to help at least one person, then I did not suffer in vain. 

It scares me that I don't know what tomorrow will bring, but I don't dwell on it. I appreciate each new day.

I love with every beat of my heart. I love deeply. I find joy in the little things. 

My Chronic Migraine Awareness hoodie. These are sold a couple times a year to help raise funding for research. They are also used to help raise awareness.

I never know  what may be, but until then...

Understanding migraine disease and migraineurs.

I have posted this article written by, Teri Robert. Migraines are very misunderstood, and when somebody knows you have a migraine, they think you just have a headache. Most people don't have an inkling of a clue as to what it feels like to suffer from migraines. I can tell, from my personal battle with migraines, that they are not easy to treat. When one treatment works successfully in one patient, there is no guarantee that the treatment will work for you. Migraine can lead one to severe depression for many reasons. Some of the biggest reasons that I experience depression is not because of depression. I have depression because the migraines prevent me from "being me" and migraines make me unreliable, because I never know when a major attack will hit. It pains me when I let my family down. It hurts when I am told that I am being dramatic. It hurts that my daughter told me yesterday that she hates me and my stupid migraines. She was mad because I refuse to let her have a smart phone. She thinks it is so simple, maybe in her eyes it is, but from a financial stand point it is not so easy. I live with the guilt everyday because my life revolves migraine attacks and everything else that my body is going through. It is hard. It is frustrating. I try to keep my brave face on and do what I can to keep life as "normal" as possible, but there are days that I seriously cannot get out of bed without my husband or somebody walking with me. The fact that I have to straight cath on a regular basis, is just a bonus. No doctor can explain why I cannot void, especially during migraine or any with any pain.
http://headaches.about.com/library/weekly/f-family-letter.htm

Teri Robert, Ph.D.              Guide to Headaches/MigraineAbout, Inc. headaches.guide@about.com      Author and Patient Advocate Help for Headaches and Migraine Disease teri@HelpForHeadaches.com        Support Advisor, MAGNUM,the National Migraine Association MAGNUMStaff@ha-support.com

RE: Understanding Migraine Disease and MigraineursIf you're reading this, someone close to you is a Migraineur, someone diagnosed with Migraine, a recognized neurological Disease. Migraine is one of the most misunderstood, underdiagnosed and undertreated of all diseases. Unless you've experienced the pain of Migraine yourself, it is very difficult to comprehend. It is not an exaggeration to say that some people have committed suicide to escape the pain. In addition to the extreme head pain, Migraine can be accompanied by other symptoms including nausea, vomiting, dizziness, extreme sensitivity to light and sound, temporary loss of vision, inability to concentrate, difficulty in speaking/finding the right words, depression, panic attacks, and far more. The slightest movement can cause such pain that Migraineurs have described it as "an ice pick in my eye," "my head breaking into pieces," and "my brain exploding." To put it plainly, Migraine can be absolutely devastating. Here are some points about Migraine Disease that you should know: Based on the most recent U.S. census statistics, Migraine Disease affects nearly 33 million people in the United States alone. Migraines are NOT headaches. Migraine is a neurological disease, similar in some ways to Epilepsy. The head pain of a Migraine attack is only one symptom of an episode of Migraine Disease, just as a seizure is only one symptom of an episode of Epilepsy. Migraine Disease is NOT a psychological disorder. The Disease and all it's symptoms are neurological in origin and very, very real. Migraineurs are not neurotic, lazy, "high-strung," overly emotional, or faking. They are in very real pain and physical distress. Not all doctors have the experience and knowledge to properly treat Migraine. Finding a doctor to properly treat Migraine is one of the most important, and sometimes most difficult, steps in treatment. There is NO CURE for Migraine. Most Migraineurs, with the help of a qualified doctor, can find preventive regimens that will prevent many, but not all, Migraine attacks. Migraine abortive medications such as Imitrex, Zomig, Maxalt, Amerge, Axert, Frova, DHE, and Migranal, do not work for all Migraineurs. It is sometimes very difficult to find medications that will relieve the pain and other symptoms of a Migraine attack. Migraine attacks can be dangerous. If the pain of an attack lasts more than 72 hours with less than four pain-free hours while awake, it is termed Status Migrainousus, and puts the sufferer at increased risk for stroke. A Migraineur in Status Migrainousus needs immediate medical attention. A Migraine attack can actually be fatal. An otherwise healthy 21-year-old member of our community died of a Migrainous Stroke in November, 2001. According to the National Migraine Association, more people die each year from Migrainous Stroke than are killed by hand guns. Migraine Disease can be disabling for some Migraineurs to the extent that they qualify for disability income or qualify for the Americans with Disability Act provisions. There are many whose Disease is so severe that doctors are unable to control the attacks, and the Migraineur is unable to work or participate in "normal" daily activities. When a Migraine attack strikes, most Migraineurs desperately need a dark, quiet place to lie down. Migraine attacks can be triggered by many things: Perfumes and fragrances from other sources are a very common Migraine trigger. If you live or work with a Migraineur, please refrain from wearing fragrances around them. Bright and/or flickering lights, especially fluorescent lighting -- some Migraineurs need to wear sunglasses, even inside. Many foods can be triggers, especially foods prepared with MSG. Loud noises and crowded places can also be triggers. Changes in weather are triggers for many Migraineurs. Cigarette smoke, exhaust fumes Each Migraineur's triggers vary. There are many other potential triggers. This list is just a beginning. Stress is NOT a Migraine trigger. It is what is called an exacerbating factor that makes Migraineurs more susceptible to their triggers just as stress makes anyone more susceptible to the virus that brings on the common cold. The Migraineur(s) in your life need your help and understanding. They need you to realize that they cannot help being ill, they are not "having headaches for attention," and they are sometimes unable to care for themselves. If they need medical attention, they need someone to take them and be with them. As well as being extremely painful physically, Migraine can be devastating emotionally and to relationships and careers. Since the disease is so misunderstood, Migraineurs often feel alone, isolated, and desolate. They also often feel guilty because they are not able to "be there" for their family and friends as much as they want to be and because they may have to miss days of work. The Migraineur(s) you know need not only your help with getting their medicines and any medical care they may need; they need your moral support every bit as badly. A good, solid support system is as important to Migraineurs as their health care teams. YOU are very important to them. That's why it's important that you understand Migraine. If you have any questions or need more information, please email me at one of the addresses at the top of this letter. Sincerely, Teri Robert, Ph.D.

Yes, my hair literally hurts!

The post below is not one that I have written, but by Ellen. She is migraine.com's patient educator/advocate. I do not take credit for this article, all credit goes to Ellen. The link to the article is also posted. 

I wanted to share this post, because allodynia is something that I experience frequently with my migraines. It literally hurts to touch my hair, thighs, back. etc. I suffer, but I stay strong and give thanks for surviving another painful day. I don't want to come across as a complainer, hypochondriac, unreliable, and so forth. I'd give anything to have my life back, instead of grieving the person I once was.

http://migraine.com/blog/migraine-allodynia-and-central-sensitization/

Migraine, Allodynia, and Central Sensitization

Posted by Ellen—August 8th, 2011

During your Migraine attack your hair literally hurts. Your child reaches out to caress you in empathy and it makes you cry. The air from the ceiling fan hurts you. The feel of your bedsheets is more than you can stand and you cry out in pain.

No, you’re not a hypochondriac or going crazy. You probably have Allodynia, a symptom of Migraine related Central Sensitization in the brain.

Pain actually occurs in the brain, not the area you feel it. When you touch a hot stove, specialized nerves in your hand send signals to your spinal cord, then on to your brain. They tell the brain that you have touched something hot. The brain recognizes the stimulus as pain and triggers the sensation we recognize as pain so you will pull away from the object that is burning you. Pain is your brain’s way to protect your body from harm. This is basically how things work when they are functioning correctly.

Sometimes our brains don’t work like they should though:

Allodynia is a medical term used to describe a patient who is experiencing pain from something that normally shouldn’t cause pain — like bedsheets, or air movement. It can occur anywhere there are pain receptors in the body, but in Migraineurs is most frequently seen as cutaneous (related to the skin) allodynia. Some of the most common places to see cutaneous allodynia in Migraineurs are the scalp, face and neck. Allodynia is a neurological phenomenon that is frequently very confusing to Migraineurs and their loved ones alike, and it is a result of the neurological processes of our Migraine Disease.

Central Sensitization is a medical term used to describe the brain’s neurons becoming hyperexcitable. The central nervous system has become unnaturally sensitized due to ongoing stimulation. An easy way to describe it is that the neurons develop a “memory” of the pain signals that are present during a Migraine attack and it changes accordingly to make the pain signals travel more easily. Some of these changes are related to neurotransmitters that relay messages between cells, especially glutamate and GABA. When these changes have been occurring for a while, allodynia can result.

The fact is, the better the pain memory, the easier it is for those pain signals to travel from neuron to neuron to the brain. Think of it like the evolution of a highway:

200 years ago a cattle path had a few cows coming and going. One day the farmer decided to use the cattle path as a road to get his family to town. He used it as a road for some time, it developed characteristic wagon ruts and soon the neighbors were using the new road too because it was easier than their less used route. Eventually the wagon ruts became a dirt road and lot of people were using it. The more people that used it, the easier it became to drive on it. The road is paved so even more could use it to go back and forth, and it eventually becomes a highway. If no one stops it, things get busy enough and it will turn into a freeway with thousands of cars each day traveling at high speeds.

In the case of our brains and central sensitization, a freeway is a bad thing because it represents changes within the brain that have lowered our ability to abort the Migraine attack. We want lightly-used cattle paths instead.

Migraine is being recognized now as a potentially progressive condition. Central Sensitization is one reason it is vital for Migraineurs to properly manage their Migraine disease (find and eliminate triggers, consider taking a preventive) and take their abortive as soon as they know an attack is happening. The abortive is one lonely cowboy. He can chase the cows away if there are only a few, but he is no match for the freeway full of speeding cars (pain signals). The longer (or more frequently) the Migraine attack occurs, the more difficult it is to stop the traffic traveling along the neuronal highway.

Once allodynia has set in, it is notoriously difficult to treat with any type of medication includingNSAIDs and narcotics. Avoiding allodynia then is vitally important to us if we are to avoid the progression of our Migraine Disease and live productive lives.

Understanding central sensitization and allodynia is important because it can help us find better ways of managing our Migraine attacks.

For example, if you recognize your symptoms as that of central sensitization and allodynia andtriptans are no longer as effective for you, this is important for your headache specialist to be aware of. Having this information may encourage him or her to look at a change of medications or other treatment strategies before the condition progresses and worsens. Knowing this information also gives you the power to begin a thoughtful conversation with your physician and the knowledge to ask the right questions.

Triptans are now considered first line treatment drugs for Migraine attacks, but typically have a relatively short window to work effectively against Migraine attacks. Triptan effectiveness generally occurs if it is less than two hours into the attack, especially in those susceptible to allodynia — sometimes less or more depending upon the individual patient. Once that mark is passed and allodynia has set in, triptan therapy may no longer be sufficient to stop the pain of the attack and other more aggressive approaches may be necessary.

This is one reason there are different kinds of triptans available to Migraineurs to abort their attacks. Some hit hard and fast. Others take longer to work, but hang in there for a much longer time period. Others are coupled with NSAIDs to further fight central sensitization. Each triptan is a little different and may or may not work for different people… or even for different Migraine attacks!

Do you suffer allodynia? What does your allodynia feel like? How do you treat your allodynia? Consider telling us about your Migraine story in the Share Your Storyportion of the Migraine.com community!

Sharing our experiences with other Migraineurs is vital so we can all understand our disease better.

Understanding = empowerment.

Empowerment = better lives for patients and their families.

Getting knocked down

The article below is not something that was written in my own words. It was written by "The Migraine Girl" from Migraine.com. All credit goes to her. There is no intent to infringe on copyright or accept any recognition for this article. I think she had a lot of great things to say, so I wanted to share.

http://migraine.com/blog/i-get-knocked-down-but-i-get-up-again/?r=

I get knocked down, but I get up again

Posted by The Migraine Girl—January 14th, 2014

For those of us who listened to (or suffered through) 1990s Top 40 radio, the song is already playing in your head. Before I apologize for implanting this earworm, I ask that you actually take a moment to think about that catchy line in reference to your migraines: “I get knocked down, but I get up again.”

The majority of us dealing with migraine disease are fortunate in that the migraine does not keep us bedridden every day. There is a very real group out there for whom migraine never goes away, and I hold such admiration for those patients who continue to seek treatment and live life as fully as they can. I have had long periods during which migraine wiped me out, but I’ve never had my migraines morph into relentless, daily attacks. To you all I express my profound sympathy and encouragement.

Those of you who have migraine-free days (or at least migraine-free hours) may very well be like me: when I am extremely ill with a multi-day migraine attack, I quickly lose sight of what it was like to live a somewhat normal life. “Sitting up without feeling nauseated? Is that really a thing people can do?” I think morosely. “Tidying the house and doing laundry? Could it be I was able to do those things just three days ago?” “Being able to focus on another human being without twitches of pain and blacked-out vision distracting me? Did I ever really have that superpower we call human conversational skills?”

I tend to forget that I may get knocked down (and how!), but that I always eventually get up again. For the vast majority of sufferers, migraine is not utterly debilitating 100% of the time. But when you’re in the throes of a particularly terrible attack, it can be extremely difficult to imagine that you’ll ever feel well again.

Call me a dork for using the phrase “self-talk,” but that’s what I have been trying to use as a tool when I’m feeling my worst. Here are a few things I say to myself inside my head when I am completely wiped out with a ferocious migraine attack:

1. You will get better.
2.  You will feel good again.
3. This is temporary.
4. You’ve been through this before. You can do this.
5. It’s okay to take the time you need to get better.
6. It’s okay to ask for help from loved ones.
7.  You will get better.
8. You will feel good again.

The phrases may strike some (especially anyone who has never dealt with chronic pain or illness) as simplistic, but I don’t need complicated reasoning and deep philosophy when I’m already beat down. I need straightforward, encouraging self-talk that will remind me of the basic situation: Yes, I’m terribly ill right now, but I will feel better. Yes, I have been knocked down, but I’ll get up again.

Happy Valentine's Day, My Dear, Butt Kicking, Pain Ensuing, Endless Suffering Jack Of A Migraine!

I had the pleasure of spending my day at LDS Hospital getting a migraine cocktail that insisted of Magnesium Sulfate, Solu-Medrol, Toradol, Phenegran, and a fluid bolus.

I went to my neurologist on Tuesday to receive a nerve block for a migraine that was on day 20 at the time. He injected lidocaine, bupivicaine and decadron via both occipital nerves. He told me the lidocaine should kick in right away, but it takes about three days before I would know if decadron was going to work or not. He told me to call him on Friday morning if I wasn't feeling any better. He told me that he would be out of town, but he would have the order all written out and ready to go if I needed to go to the infusion center on Friday. The whole purpose of going to infusion center is to avoid the "rig 'em 'n roll" of the ED.

Friday morning rolls around and I am in excruiating, debilitating, help me, I wanna die pain.(just to clarify, I am not suicidal).  My husband called the Neuro-Science Institute (which is where my neurologist is) at 0800 and he got sent to the voice mail of Dr. Hoesch's CMA, Mo.  Rick left a voice mail. Waited two hours, and called again. He got sent to the voice mail of CMA, again. I also sent a message via "My Health".  By noon, we still had not heard from anybody. My husband came and woke me up. Their office was closed at this time, as it was lunch time (don't they know that people still get sick during lunch hour). My husband even called the infusion center and they told him that they had to have the orders before he could make appointment. And don't worry, my opinion about this whole ordeal will be heard. Patients should not have to play the game of you call here first, but we can't talk to you until this time, and so and so is gone today so we can't help you.  I told Rick I would wake up and shower so we could be to their office at 1300 (1:00 P.M.) and maybe have better luck.

This is what I looked like yesterday when my pain level was down to a 7-8.

We got to the office and Mohammed, the CMA said I could just go to the infusion center. I questioned him because that is not what Dr. Hoesch told me on Tuesday. He said that I needed to call the Neuro-Science Institute so they could get the paperwork ready to fax infusion center,  and so I could schedule an appointment. He said the Infusion Center at IMC is sometimes full, but I could go to other infusion centers throughout the valley if that were the case.

 Mo was like, really? "O.K., I will call them right now". He called them and they were full. He told me that I needed to call two to three days in advance for appointment at the infusion center.

Me: "Oh really, I'm just supposed to predict when I will be plagued with yet another debilitating migraine?"

Mo:"You could just take the paper to the ER and they could do the orders in the ER."

Me:  "I appreciate that, but the whole purpose of the infusion center is to get migraine treated quickly, quietly, and as effectively as possible without causing more stress, pain, and anxiety for the patient. Will you please call Alta View Hospital and LDS Hospital to see if there was room at their infusion center?" (sound anything like Amber, the CN?)

 Mo comes and tells me that McKay-Dee had some beds available.

Me: "I'm sorry, but I can't go up to Ogden. I asked you to call Alta View and LDS. I appreciate you calling McKay, but we can't make that work today.  My husband has to be able to get my girls from school". Another 10 minutes goes by and Mo comes back to tell  me that I can go to the infusion center at LDS hospital, but I had to register before I got there. "OK, thank you".

I called and registered on my way to LDS hospital as it takes 25-30 minutes to get there from where we live. IMC is not too far from our house. I arrived and they were just finishing up the registration paperwork. I gave them my copy of updated medical information (the one I make that has meds, allergies, medical providers, past medical and surgical history). Even with migraines, color coded, nerd sheet Amber lives on!!

They wasted no time getting my treatment going. I had my snuggly and my rice bag with me, of course. The tech was even nice enough to warm my rice bag up for me, even though I told her she didn't need to. It is just a comfort thing to lay across my abdomen.

The nurse, Jeanne, was one of the best nurses I have ever had. She was so sweet. She sat in my room and talked with me for over an hour. Her son had rhabdomyosarcoma and they lived at Primary Children's Hospital for over a year. To date, he is the only child that has lived past the age of 10. He is 15. She said they have been studying the success rate for about 50 years, and her husband is involved with the research. I love hearing great success stories like that. She was amazing. We talked about everything from our favorite authors, to the things they don't teach you in nursing school, to fun family traditions, etc. I also warned her about my unstable cognitive function, where I can go completely blank in the middle of a conversation and then have no clue whatsoever what I was talking about. I told her that I can also speak jibberish and become disoriented. She thanked me for warning her, other wise she would have freaked out. I told her, still have to do the stroke test, (smile = for example).   She kept checking on me every 10-15 min.

She said she was so sorry that I haven't been able to work in over a year and that I have to use a straight cath to drain my bladder. I told her, "don't be sorry, we all have our challenges, and this just happens to my challenge at this time". I told her, there is nothing I can do to change it. I accept it and I keep moving/dancing forward.  There are so many people out there far worse off than me. I am not expecting sympathy, I am just trying to change the stigma of migraines, and if my pain and suffering helps raise awareness and change the stigma, then I did not suffer in vain.

So, yeah, life can be hard, but we all know that. We all know there is no such thing as a perfect life. We all have our demons we are battling. Some are more open than others. I am more open, because it helps me psychologically. It is hard not knowing when I will have a good day or a bad day. The NOT KNOWING anything right now is so extremely scary for me, but I can't waste my focus on the what if's. I need to focus on what is right here, right now and if I can do anything about it.  I don't write or talk about a lot of things, because "if you don't talk about it, or write about it, then it never really happened or happens, right"?

I spent the day at LDS hospital, but it was a pleasureable experience with an angel for a nurse. I don't expect miracles, I just want to live as normally as I can, with the situation at hand.

Lying in bed at the infusion center. Plugged into my headphones, playing the music that calms me and relaxes me. Cold sore and all. (I desperately need my hair done).

The IV with different meds being Y'd in.

I still don't feel great, but I am not complaining. I think I kinda look like a little kid in this one, scared and vulnerable.

Mallory and Savannah came after school. I had to have oxygen for a little while, but I am ok. 

Sadly, thanks to Mommy's migraines, plans were cancelled, yet again. We were going to have a family game night. I was going to make my famous corn chowder. We were going to have a family night, free of any electronics, but it is just on hold for now. I promised my girls we would do it, and I surely don't want to break a promise. I am sorry that my girls have a Mom they have to worry about so much, a Mom that can't make plans far in advance, a Mom that can't do and be all that she wants to be for them. But, they know I love them. They know I am a fighter. They know I am strong. I just have a couple days here and there where I let the guilt, of all of the above, get to me.

The Stigma of Chronic Migraines

Here is another article that I found to be very informative and might help shed some light on those that don't quite understand  migraines.

http://www.health.harvard.edu/blog/the-stigma-of-chronic-migraine-201301235828

The stigma of chronic migraine

POSTED JANUARY 23, 2013, 9:50 AM

Stephanie Watson, Executive Editor, Harvard Women's Health Watch

At least once a week throughout my childhood, a migraine would force my mother to retreat into her bedroom. She’d shut the blinds and burrow under the covers, overwhelmed by a pain so severe it turned the faintest sound into an agonizing roar and launched waves of nausea with the slightest movement.

Though my family and I tried to be sympathetic, it was hard for us to fully comprehend my mother’s migraines or understand why she had to miss so many events because of them. When you’re on the outside looking in, you can’t begin to appreciate how severely disabling—and life disrupting—chronic migraine can be.

The “unseen” pain

Migraines are often misunderstood, or dismissed as “just a headache.” Yet they have the capacity to disrupt a person’s life, relationships, and sense of well-being. A study from Thomas Jefferson University in Philadelphia, released last week in PLoS One, found that chronic migraine sufferers experience as much social stigma as people with epilepsy—a disease that produces far more obvious and dramatic symptoms.

Some of that stigma is external—for example, getting treated differently by friends or colleagues. “Migraines are the unseen and undocumented pain that takes them away from work,” says Dr. R. Joshua Wootton, of pain psychology at the Arnold Pain Management Center at Beth Israel Deaconess Medical Center, and assistant professor of anesthesia at Harvard Medical School. “There’s no empirical test for migraine yet. That’s why people who report these problems with chronic pain are often not believed or are thought to be exaggerating in the work environment.”

Yet much of the stigma, the study found, is internal. Migraine sufferers often anticipate that their headaches will elicit a negative reaction from friends and colleagues, or that they’ll be less productive because they have to miss work so often. Such subjective experiences of stigma can be as damaging to health as overt discrimination or the loss of social relationships.

Treating migraines

Effective migraine treatments are available—but many migraine sufferers don’t take advantage of them, either because they don’t seek help or they mistakenly believe they’re just suffering from regular headaches. “I think 80% of all migraineurs can be effectively helped, but only about a quarter of them are effectively helped at the present time,” says Dr. Egilius Spierings, associate clinical professor of neurology at Harvard Medical School.

The gold standard for migraine relief is a class of drugs called triptans, which include sumatriptan (generic, Imitrex, others), rizatriptan (generic, Maxalt), and zolmitriptan (generic, Zomig). When taken at the first twinge of a migraine, triptans can relieve pain, nausea, and light sensitivity. “These medications have been on the market for about 20 years now,” Dr. Spierings says. “They have been used widely, and are generally very safe and well tolerated, and also very effective.”

As my colleague, Heidi Godman, has written in this blog, there are also drugs that work in advance to prevent migraines—including beta-blockers, antidepressants, anti-seizure drugs, and Botox. Although preventive medicines don’t work quite as well as the triptans, says Dr. Spierings, they can reduce migraine frequency in some people who get them regularly.

Part of migraine prevention involves avoiding the sights, smells, situations, and foods that trigger these headaches. Keeping a headache diary can help identify triggers, which may include loud noises, bright lights, strong scents, hunger, fatigue, and foods such as chocolate, aged cheeses, alcohol, or MSG.

The emotional component

Migraines aren’t just a physical condition. Living with chronic pain, or the constant worry that a migraine can strike at any moment, can take an emotional toll, too. Migraines have been linked to an increased risk of depression. A study presented last February at the American Academy of Neurology’s annual meeting found that women with a history of migraines are 41% more likely to be depressed than those without the condition.

When you can’t find effective ways to manage your migraines, “that frequently results in feeling helpless, hopeless, and as if everyone is against you,” Dr. Wootton says.

If you’re having these feelings, it can be helpful to see a psychiatrist or psychologist—particularly at a center that specializes in pain management. “If you have considerable anxiety and/or depression, addressing those issues is important because they negatively affect migraine. They also make it much more difficult to cope with a condition like migraine,” Dr. Spierings says.

Mental health professionals can offer behavioral techniques (such as meditation) to address chronic pain—and the stress associated with it. They can also help counter any negative perceptions about migraine.

Migraine can be a frustrating condition to treat because there is no quick “cure.” My mother has tried just about everything, and some therapies have been more effective than others. Probably the safest, surest way to migraine relief is to work with your primary care physician, neurologist, or headache specialist. With some trial and error, you may find a treatment that finally relieves your pain.

I won't complain

I have pasted a copy to a link on migraine.com. I liked this post and it says so much in so few words. I try not to complain. A lot of times when I talk about my journey, I am not doing it to complain or seek attention. I am doing it to help raise awareness and hope that others learn that migraine is not just in the head. They can be pretty serious, and they can cause death. Having a stroke is a huge risk factor for those that suffer migraines. The pain we endure day in and day out is impossible to describe or for others to understand unless they have been in a migraineur's shoes.

http://migraine.com/stories/i-wont-complain/

I won’t complain

Posted by Ralene—February 11th, 2014

One of the hardest lessons to learn as a headache sufferer is that my headaches are caused by many factors but the mind game of blaming myself for the pain is destructive and counterproductive to the healing process. As I struggle with the reasons, what I could have done differently, or what others are thinking, my physical body pays a greater price. Hearing someone tell me, “you must learn to slow down” or “if you had not done this you would not be sick” is harmful because it places the blame at my feet. I know they mean well but their words hurt as often they echo my own personal feelings. No one desires to hear “I told you so."

Freeing my mind is the first step in the healing process. I recognize now, my suffering has a purpose. It builds my endurance, faith, testimony, and resilience. There are times that, yes, if I had not done x, y, z I may not have got a headache. Also there are times, where doing nothing causes more pain than doing something. I choose the life of promise which is pressing towards the mark. I will not allow my suffering to be in vain. Yes I will suffer but I know God has a plan. If I share my pain it’s not to complain. It’s for love, compassion and comfort, never discipline. I no longer despise the journey because God has a purpose and my prayer is to live on purpose. Keep praying for me as I pray for you. As I encourage you, I encourage myself.