Migraine is the most common neurological condition in the developed world. It is more prevalent than diabetes, epilepsy and asthma combined – eight million people in the UK have migraine (The Long-term (Neurological) Conditions National Service Framework, Department of Health, 2005).

Migraine is amongst the three most prevalent health conditions worldwide, along with anaemia and hearing loss (The global burden of disease: 2004 update, World Health Organization)

Among adults of all ages, migraine is one of the top 20 causes of disability expressed as years of healthy life lost to disability (The World Health Report 2001: Mental Health: New understanding new hope)

Severe migraine attacks are classified by the World Health Organisation as among the most disabling illnesses, comparable to dementia, quadriplegia and active psychosis (Shapiro & Goadsby, Cephalalgia, September 2007)

Migraine is the least publicly funded of all neurological illnesses relative to its economic impact (Shapiro & Goadsby, Cephalalgia, September 2007)

In the UK, there are an estimated 190,000 migraine attacks every day (Steiner et al, Cephalalgia, 2003)

An estimated 25 million days are lost from work or school every year because of migraine (Steiner et al, Cephalalgia, 2003)

Just over a third (34.3%) of migraine sufferers face difficulties or discrimination at work because of their condition (The Migraine Trust, 2004)

Over half (54%) of migraineurs experience one or more attacks per month, and 13% claim one or more attacks per week (Steiner et al, Cephalalgia, 2003)

Women are more likely to have migraine attacks than men – 18% of women and 8% of men (Steiner et al, Cephalalgia, 2003)

Children can get migraine attacks too. Attacks can start at any age, but they usually start in children who are in their early to mid teens (Goadsby et al, New England Journal of Medicine, 2002)

A survey of neurologists found that up to one-third of all patients consulted because of headache – more than for any other complaint (WHO, Factsheet 277, March 2004)

Depression is three times more common in people with migraine or severe headaches than in healthy individuals (WHO, Factsheet 277, March 2004)

Migraine remains undiagnosed and undertreated in at least 50% of patients, and less than 50% of migraine patients consult a physician (Pavone, Banfi, Vaiani & Panconesi, Cephalalgia, September 2007)

Migraine is ranked globally as the seventh most disabling disease among all diseases (responsible for 2.9% of all years of life lost to disability/YLDs) and the leading cause of disability among all neurological disorders.

(Steiner TJ et al.  Migraine: the seventh disabler.  The Journal of Headache and Pain 2013, 14:1.)

Severe migraine attacks are classified by the World Health Organisation as among the most disabling illnesses, comparable to dementia, quadriplegia and active psychosis

(Shapiro & Goadsby, Cephalalgia, September 2007)

Among adults of all ages, migraine is one of the top 20 causes of disability expressed as years of healthy life lost to disability

(The World Health Report 2001: Mental Health: New understanding new hope)

An estimated 25 million days are lost from work or school every year because of migraine

(Steiner et al, Cephalalgia, 2003)

• So, I showered yesterday. Big deal, yeah?! Not for most people. Most people shower daily as part of their routine. I have no routine. It was taken away from me by my body, my disease, my condition. It’s like a death, and I grieve it tremendously. I am restricted to doing only what my body allows for me now. “Original me” did whatever I wanted, whenever I wanted, without much thought of restrictions. Especially to my daily routine. I’d get up in the morning to the alarm, shower, do my usual routine, get dressed, eat breakfast, and drive to work during the week. Weekends were for relaxing, shopping, museums, travel, whatever I chose. It was easy, simple really, some might say boring, but it was my life. And I controlled it. No one or nothing else did. I am now at the mercy of a monster, demon if you will. This demon owns me body and soul, as much as if I’d sold myself to it. My routine is gone, I cannot work, I function and fumble through life as I’m able, but I am not in control. My demon decides if I sleep or if I’m up all night. It decides if I can get out of bed without pain, stumbling, falling, or at all. It decides if I’m too nauseous from pain or meds to eat. It decides if something as simple, easy as a shower is allowed, tolerated, or causes so much pain that I just sit on the tub floor and cry. Just the water hitting my head can be excruciating So, my shower yesterday?! Huge deal! I must have done something to please my demon, for I had a pain-free, long, hot, even enjoyable shower. Then the exhaustion hit and I could do nothing else for the rest of the day. From a shower! I know, crazy right?! I’m quickly learning to take what I can get and appreciate it. A drive to a doctor appointment without too much pain, aura, or visual disturbances to see properly. A trip to the pharmacy without the lights, noise, and smells of the store turning my daily migraine into a 10+. A phone call where the person I am speaking with understands me because aphasia hasn’t caused me to use incorrect words and/or phrases. And yes, even something that used to be so commonplace for me, a shower. I have a love/hate relationship with my demon. I hate my limitations with a passion, but, as long as he’s driving this body, I’ve learned to love and even treasure the little things I’m allowed to do for myself because they are few and rare and precious. A few hours without pain, a day that I can walk to the mailbox by myself, a day without having to cancel an appointment, a day without embarrassment as to what I may say or do while I’m out. I do what I am allowed to do and I do it gratefully. But I haven’t given up, and I am still in here! It’s still me, still my thoughts, my dreams, my future, and I am fighting desperately to take charge once again! Do I dream of the day I can take back control of my body?! Every damn day! And I will! And when that day comes, I plan on sending my personal demon straight back to hell where he belongs! Happily! And hopefully forever! Until then, #AlwaysKeepFighting! 

When I was in my late 20’s and early 30’s, I travelled. A lot! There was nothing I enjoyed more than the planning, research, and studies of another country. I attempted to learn the basic language, locate the museums and exhibits I just had to see, and the cuisine I wanted to taste. I didn’t have a strict itinerary, but I wanted to see everything I could in case I never made it back there and I usually saw it all. My travelling companion was always my Mom. We made a great team! We shared the same interests and got along so very well. We walked and walked and walked. We turned corners and found hidden gems not found in any guidebooks. Secret gardens, surprise exhibits. We talked to locals about the best non-touristy places to see. We saw the works of the greatest artists, painters, sculptors and inventors that ever lived. We saw buildings and ruins, gardens and cemeteries steeped in history. The greatest monuments and statues ever created. It was truly awesome. We went to England, Italy, Amsterdam, and France. We met amazing people, learned about different cultures, ate, shopped, browsed, wandered, dreamed of living in each city. It was magical. I never wanted to stop travelling. But I had to. My body wouldn’t allow it anymore. Daily migraines, chronic pain, and fibromyalgia didn’t make for great travelling companions. Not to mention the lack of income to afford the trips since I couldn’t work anymore. I refuse to admit that I’ll never travel again. I have to believe I will, at some point, be well and strong enough for another trip. It’s one of the few things that keeps me positive and allows me to keep fighting. Better days ahead, I hope!

I have fired my psychiatrist! Smart move?! I’m not sure. Do I feel good about it?! YES! I was in crisis last week with the “demon drug” withdrawal. I was a sobbing, panic-stricken mess! I had a scheduled appointment the following afternoon and called to say I couldn’t make it. The receptionist was understanding and put me through to the “person who could help me.” I tearfully explained to this person that I couldn’t drive in my condition and had no one to bring me. She told me to hire a taxi or find a friend to get me there. This brought on more tears as I explained that I had no money or friends at this point. She replied “Well then I don’t know what to tell you!” She told me to call my insurance company and maybe they’d send an ambulance. I still owed my deductible, so that wasn’t even an option. I went on to tell her that I needed a refill on my anxiety meds. Given my current state, I assumed this wouldn’t be a problem. WRONG! No refill without an appointment. No exceptions! I was told to find a way to get there and there would be an additional $40.00 charge for a “bridge” prescription until my next appointment with the doctor. I was crying so hard I doubt she understood when I said forget it! I called my pain management doctor, spoke to his nurse, and a prescription was called in to my pharmacy. Compassion, empathy, common decency, that’s all I wanted. I understand office policy and procedures, but each case is different. They can’t be so rigid as so not to bend for special circumstances.  And to top it all off, they billed me $40.00 for a missed appointment! So I’m searching for a new psychiatrist. Fingers crossed! Better days ahead!

So yesterday I finally decided to venture out from these 4 plus walls I’ve been hiding within. I’d been out for mandatory doctor appointments for Mom and myself, but not just for the sake of being out in a long time. The trip started out fine. My daily migraine was at about a three, which for me is not bad. We arrived at the first store and were immediately bombarded by a cacophony of bells, buzzers, intercoms, flashing lights, screaming adults, crying babies, perfumes, colognes, cleaning products, body odors, and too many others to list. I tried my hardest, but less than halfway through, I gave up. After retreating to relative safety of my car, I broke down. I cried for the loss of the “normal” woman who used to go wherever she wanted without any advance planning. She didn’t pack a “migraine emergency kit” or check the weather before leaving the house. Her purse didn’t rattle with pills when she walked. She held her head up high, stared up at the sun and was thankful for a beautiful, cloudless day. She talked to strangers just to meet people and make conversation. She was “normal!” Migraine me hides in the dark, keeps her head down while out to avoid lights, cringes like she’s been shot from noises, covers her nose from smells, doesn’t interact with others because they may be wearing perfume or cologne. She is often teary and frowning. Her pain shows on her face and in her body language. She is not the “me” that I want to be.

I realized it’s been 8 months since I reapplied for Social Security Disability Insurance for the second time. I did it myself the first time and was denied. I reapplied with new information and was denied once again. I hired a lawyer and have been waiting for 8 months now. In Virginia, there is a 12-18 mos wait for an Appeal Hearing in front of a judge. 8 months! 8 months with no source of income because until SSDI is approved, I am not eligible for any state or government assistance (Medicaid, etc.) If approved, I am then eligible for both benefits. But what about now?! For the past almost 4 years I’ve been fighting this ridiculous system! I’m sure it’s jammed with false claims and scammers, but it’s affecting me, and that hurts! I worked for almost 30 years full-time until I had to stop for medical reasons. I was always a loyal employee and loved my jobs. They were not only a means of financial support, but a reason to get up in the morning, to interact with other people, to learn new things, and to be a part of something larger than myself. I would give anything to be able to work again! If nothing else, to get out of this house and ease my rut of depression and anxiety. Having a purpose so I don’t feel so useless and worthless. But my body won’t allow it. I try to get ready to go out and am inundated with symptoms too many to list. Occasionally, my demons let me out for a few pain-free hours of doctor appointments or picking up prescriptions, but rarely to have lunch with one of the few friends that haven’t left me, or to a museum to enjoy the art without perfume, noise, and lights driving me back into the safety of my home. I know that winning my case and getting my benefits isn’t a cure-all, but the relief from my financial burden will ease my depression, anxiety, and panic attacks immensely! Then I can concentrate solely on finding relief and proper treatment for the RA, Fibro, and chronic daily migraines. Fingers crossed. Breath held. Better days ahead.

My depression has me in it’s grip right now. It’s like I’m on the outside looking in. I see a terrified woman curled up in a ball, sobbing uncontrollably. She’s in a dark room with no door. No windows. No way out! Trying so hard to catch a breath or form a thought. How long has she been in there?! Can’t anyone see or hear her?! Where are her family and friends?! Do they even know she’s there?! She’s not loud. It’s like she’s trying to hide the pain and anguish. Trying to make herself as small as possible. What could make her so scared, so sad, so utterly alone?! I can feel her hopelessness, her loneliness, her complete agony and fear. I don’t see any blood or broken bones. Where is she hurt?! There’s nothing visible. It must all be on the inside. How much pain and suffering suffering must a body have endured to become this! This poor woman in the dark. I pray she makes it back into the light.

Many websites document Cymbalta withdrawal trauma 

anecdotally (1,000’s of Entries)

• What Winners Do:

– http://www.whatwinnersdo.com/severe-cymbalta-withdrawal-symptoms/

• Cymbaltawithdrawal.com

– http://www.cymbaltawithdrawal.com/

• Depressionforums:

– http://www.depressionforums.org/forums/Cymbalta-Withdrawal-It-s-Pretty-

t13148.html

• Point of Return:

– http://www.labelmesane.com/cymbalta_withdrawal.html

– Third party withdrawal assistance

• Why should a consumer need to pay to discontinue?

• Depression Hurts, Cymbalta Hurts More!

– http://www.youtube.com/watch?v=yeq4gSfMXdo

• Youtube video

• Concise (2:30) description of the trauma and its effects

• Cafepharma:

– http://www.cafepharma.com/boards/showthread.php?t=207484

– (Not Lily sponsored) drug rep page – The reps are aware of the issue

• If the reps know, why don’t the physicians know?