About Me: Female, 57, Hampton Roads , VA, member since Mar 2009
I have intractable pain.To everyone out there-- don't give up if you have pain. I worked for apprx 24 yrs or so on the road working as a "detail" rep in Big Pharma in NC and VA. began after undergrad--was actually hired at age 22 and hired on in 1982 after graduating
[More] with a Bus. Degree (also almost 4 yrs of nursing school-- completed most clinical rotations, but did not like nursing, and this was Reagan yrs.. things were very expensive and I needed to get out school so I used my nursing courses as electives/ took 21 hrs etc to graduate essentially 1 semester behind.
Worked for a nonliving wage in a Drs office FT until I could get on w/ a Big Pharma company- those nursing courses came in handy to help get a job. Back then-- detail "men" mostly--were much fewer in number--much better trained, typically had allied health, biology, nursing , pharmacy education. Not now. Worked for a yr in Wash DC. , then returned to the coastal NC area /worked a mostly rural, coastal and inland a Southern farming area (mostly primary care , but in my largest metro areas --still small--I saw neuro, cardiology and later in a much larger metro are in S Eastern VA --a mix of rural and metro--in addition t orthopaedic, GYN, urgent care and pain mgt etc. Those nursing courses and the science came in handy, but I stupidly cheaped out when I left nursing--should have double majored picked up the BSN ,too.. Well you are not smart when you are 21 yrs old. Smarter now age 50. During my work life once my pain became a bit more problematic, I got off the road for a few yrs and worked for community hospitals, picked up my masters in science education (thought a teaching degree might be useful someday) and did not want another business related degree/needed a "quick Masters" in order to be competitive w/ younger persons when needing to get back into Big Pharma (to earn a good wage). Took one yr. off during the early '90s recession. and did consulting and went to grad school FT (and pain was a big issue,but not as big as it would become).
All this time, I had classical migraine very episodic from the age of 5 (I then called auras --the Dreams"--visual auras. At age 30 or so they became much more intense and eventually became daily. Was not related to "rebound"--only got 10 percocets a mth and 9 triptan tabs when they came out for pain that was way disabling,...would have to pull over to the side of the road and sometimes could not get home at night form my work..thank goodnesss for expense accts.
Was refractory to all meds for prophylaxis( and when you hurt you will be compliant) went the inpt headache clinic"route" where after 2 weeks when their tx failed, I was made to feel as if "I" had failed. I was hopeful, motivated, but did not find the help I needed until 2003.
Home now w/ SS disability (been home for 8 yrs now) do flexible volunteer work for people w/ hidden disabilities--intractable pain in my case afelx volunteer for a national pain fdn org. and a local mayor's committee for disabled--doing much better since 2003-4-when I finally found good help for refractory complicated migraine after I read an article in a med jrnl (Cepahlgia).
I emailed the PI of the article--he was not in my state (VA) ,but pleaded w/ him to help as he had only a small clinical practice at that time/did research mostly --he said "yes" and in 2003-4 I would fly to NY to SUNY-Syracuse and now to NYC when my SUNY neuro who helped me so much retired ( fly up for the day to this day 2009 every 5 mths or so to NYC now to see a subspecilist neurologisto--she's great /I learn something new everytime I see Dr R.and my FP does the mth to mth mgt -- he and his staff are super ,too
.I work very hard to not impose/waste their time--have my "stuff" together for Rx, paperwk requests, visits,etc and also remember them at b'days, holidays,et al--they keep me going and able to be functional and happier--I am grateful they agreed to be part of my tx team.
Prior to 2003 form 1990-1999, I had been under local neuro care w/ no real help. I went off all meds for 9 mths (preventative and abortive) in 1999 to r/o "rebound"--no change in status of migraine pain or auras. From 2000-2003 I re-tried all the preventatives/ same thing again w/ a new neuro/still refractory and boy are you motivated when you need to work and want to get better..-- in 2000, he started me on a small dose of LA opiod. It helped a little, but he would not "raise the dosage" to see if we could get bettter results and essentially told me there was nothing more I could do.
I knew if I was going to get better I had to be my own advocate . I needed a tx team approach and I needed someone who would think outside the box--knowing that nothing worked that was considered "usual" for treating this problem. And there is a real bias to treating migraine w/ opioids, but when things are this dire--you need to get around your biases. There is little real research out there--it see,s to be mostly opinion and a few studies where pts. are given questionnaires, but are missing good data with ctrl groups,etc.
Using the above new neuro at SUNY (we slowly over a yr titrated the LA opioid (I am remain stable and much better for the past 3.5 yrs when the dosage leveled out at 200mg daily of MSContin generic and Actiq800mcg (gen--despite having Federal Blue Cr , now have to pay for this as they say it is off-label /FEPBlue pd for almost 4 yrs but denied pyt once the Rx went generic--business reasons not clincial--appeal denied, So we budget, max FSA, etc (live small in terms of housing, cars, etc--we travel w/ my husband's flyer points/Hotel pts mostly and now w/ the ability to take care of myself I can do some travel and flex vol. work :) Actiq works wonderfully for breakthru mig. high level pain (and esp if you have to be on LA opioid)--10 mins and then the drug clears so fast I can be active within an hr usually--no ED visits/no 3 day inpt stays for fluids/Steroids IV in 6 yrs :) to break "migraine status" episodes. Auras--well nothing has worked--but they keep life interesting to say the least.
Not perfect . Still have this condition -but the daily pain "volume" is way down" many days and I know even when pain comes back--it will not stay if I treat aggressively, at high levels and do my part daily to help the situation modify what I can, etc...it will not stay in a highly painful and disabling state every day now.. Most people (me ,too) get thru almost any pain that is finite (several surgeries--no problem) --post surgery pain for (breast reduction is major surgery) an inconvenience compared to migraine pain.
So complicated auras/ some cognitive problems remain even when pain is low -- My tx"team" including my neuro in NYC, my FP and staff,a good pain mgt psychologist, and my pharmacist who specializes in pain conditions--certified phcy in pain mgt--and me (I have to do my part--exercise, eat right , rest, keep a reliable schedule) really have made my life so much better since 2003-4....things are stable and under better pain ctrl...
..found that once I felt better, I could do modest exercise, got a Lapband and lost that weight that came with over 60 lbs in 5 mths after I began using things likeDepakote , tricyclics,etc.
I call it iatrogenic fat :) ) , but complicated auras are present daily and "pop in and out" all day and cognitive problems are just there--well it's not intellect--average (masters degree in science educ for elem/middle school level of education--I got the MS Ed before the pain and some tia like things did some damage--just small things on MRI, but repeated neuropsych testing show some problems that are not getting better, but not worse.
I found thru self study on Medline a, JAMA article in 2005 --European prospective data showed that women w/ mig. and auras-- migraine is not just a painful-, but benign condition, but that in women w/ certain auras, etc this can be progressive in terms of cognitive damage .My own cognitive issues are in "everday memory", syntax/grammar, sequencing, sh. term working memory---and long term--some yrs seem "gone" (I am almost 50 yrs old) ,even though I have a much better overall reduction in pain, week to week - the way a day "will go" is unpredictable as to when a high level pain migraine (w/ more intense auras) will breakthru .
.Found out 5 yrs ago more about my father's extended med hx family (knew little about them), so I attended my first family reunion as an adult 5 yrs back--many in the family have complicated type migraine, stroke in their 30s, and dementia early onset-...I have and continue to have little" tia-ish" things at times--, auditory,olfactory and visual auras not epileptic/ these events are kind of like those assoc. w/ seizures and also some stroke like (again, not sure things medically always fall neatly into categories). I was told that if t the neuropschologist had not known that I held a masters degree they would have not thought me capable of going to college based on some areas now in functioning (areas that were fine). So, migriane can fall into grey areas ---and it is often not taken seriously.
I was approved for SS Disability quickly , but did not apply for 2 yrs after I left work--kept thinking I would get better and be able to go back to my former work or similar--tried working as a clerk in a small phcy in early 2000--but the cash register was too mcuh--sequencing problems). So volunteer work for a national pain org. is best as it is flexible. And everyone needs to be "out there" and we all need to feel useful and part of a contributor to society---hidden disabilities--you never know and there are 75 mill. in the US w/ chronic pain.
So, I have a pretty happy spirit. Contented, I have a great husband--he works for NASA - a physicist (applied) and works now in global warming type stuff and 2 old kitty cats. I I caregive for elderly parents--my Dad has intractable arthritic pain/migraine , but now that is not as bad)..
I travel with my husband and a girlfriend or two when possible (he's on the road lots) still try to do as much as I can--On days when pain / auras are just more intense (and when you travel you have to at times just allow via extra "rescue" meds, etc and I have learned to rest, my husband or girlfriends just go their own way and we meet back later --I do not hold others back and just try to take the better treatment I have received in the past 6 yrs that has made my comfort and actually my function in many ways much better.
-I used to work---and fall into bed at 7pm...just to be able to get up the next day--did that for 14 yrs as I was refractory to all things tried--been thru the mall--even some alternative staff--and was "ever hopeful"--but I finally wore down .Age I think does that. And grinding pain and hurt physically and the . I have to take care of myself, but can do flex vol work and do so--have good weeks, bad, and mostly in btw., but I really would like to be more "reliable" as I was offered a job I would have loved--working for a nonprofit org (organ transplantation--I would go and inservice and promote the program, but cannot know really sometimes form day to day--is this going to be a good day--or just a few good hrs--or is it a good week so I have to stay within "what is possible" and do what I can. cheerfully..
So to everyone out there-- don't give up if you have pain. Become your own advocate or reach out and ask someone to help you advocate for yourself. And do not ever take NO for an answer. And be prepared to work hard yourself to get well and to stay well. Do not become a FT "patient" in your mind ,even w/ disability. Your med problems are just that--problems to take care of. You may have to modify your life. But do not modify your spirit. Thanks.
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