Quote From: kjhamilton Hi, (Compare migraine (20-30 Mill) with high blood pressure where 40 million Americans have this--iboth common illnesses--and in migriane the patient is often "undergound" a lot as people often feel no help is not available or they will lose their jobs if their company finds out they are ill)
I have had migraine (they are not simply headaches although they involve horrrible head pain) and after 13 yrs of daily migraine and it's stoke like auras, etc I was forced to leave a six figure income job for Social Security disability. I am unusual, in that I receive my Soc within 4 months of initial application. I am fortunate--no children and a husband who is very well educated with a good salary that affords me good care and less income worries. These migriane attacks are disabiling many times--have been hospitalized more than 10 times over the past 13 yrs to treat flare-ups--they are not a take a Tylenol headache. They are a neurological problem and within the past 4-5 yrs the first prospective study has been done (JAMA published) that shows that people who have frequent attacks (w/ aura) have in their brains a proccess that may be cumulative in causing damage to the tissues of the brain . Migraine is not a discreet, painful, but benign entity--it can be something entirely different.
However, if you suffer migraine symptomos and pain you can not give up either hope and you must if you have chronic pain, become active in your own care and be your own advocate. My best advise is to get yourself to a university -based specialist for care. Be prepared to travel and fit that into your budget.
You will even w/ the best of insurances, pay out of pocket for things such as travel to see specialists if you live out of town. We make trade-offs in life, and I would rather have pain-reduced/symptom reduced days/better life quality --- that means for us as a family-- doing without frequent mall trips, driving more basic cars, living in smaller homes,etc which gives us spending that allows for better medical care. We can't afford to have a high maintainence lifestyle when so much of med care is out-of -pocket now. and I have a chronic health problem.
University-based pain clinics are on the cutting edge of pain care. I fly to Columbia Univ./NYC from VA every 4months and am followed monthly by my family practice doctor who works together with my specialist. My treatment program includes medications (in my case long acting narcotics which have to be managed carefully and with great understanding via the patient, Dr. and pharmacist) and I have also done PT in the past (now I walk for exercise) and my treatment plan includes seeing a psychologist in my home city who deals specifically w/ chronic pain patient every month. It is unfair to your family to expect them to carry this problem and act as your therapist--essential to help you and your family cope.
After 13 yrs of poor control, my life is not perfect now, but in the past 4 years I have felt better than the previousl 13 yrs before (when my pain went from once every week or so to a daily basis around 1993). The past 2 years have been some of my "best years" since childhood in terms of pain reductions and feeling well.
I can do volunteer worknow ,as this type of work can be done on a flexible schedule > I can now with treatment, be of use to my family and friends and enjoy their company. I have had to "give up the old life",--that life no longer exists and I am a different person now. But in it's place, I have a different, but productive life. and a content life with much happiness.
My weeks are like this--even w/ a good treatment plan and good compliance to my plan of treatment, I still have days where pain "breaks through" in a hard way. I treat it acutely and aggressively to get back to a more "normal" state--I have to be very structured about getting the right balance of activity to rest each week. I am not at the point where I know from day to day when the problem will flare and am unreliable for paid work, where a daily fixed schedule is involved,
Once I decided in my mind to let go off old ideas--the idea that work is only useful if your are paid, I decided that I could do volunteer/advocacy work that was as important as a any paying job, but would take into consideration my limitations and new strengths.
Google the American Pain Society for chronic pain and you will learn so much. Also, if you want to know more about the realities of migraine pain in particular, I would recommend an international site being built in an ongoing way via pahysicians, clinicians, migraine patients to help us learn more about the subject www.migriane-aura.org is a great site. MAGNUM (in the U.S.) also a greta Website that can be reached via Google has worked to help change perceptions on migraine and works to help migraineurs thru advococy to get legislation passage that increases funding for migraine research, and disability law legislation.
I worked for years as a pharmaceutical rep for Big Pharma" and know the ins and outs of healthcare as well as any lay person can---you have to grit your teeth, work thru your daily pain, and advocate for yourself. Tihs is DIY medicine--no one cares and will take care of you, but you. So find, similar people of like condition and work your tail off to get yourself a better quality of life.
Good luck and if I can be of help to anyone, please I'm here. Kathryn Hamilton :)