This may or may not contain a lot of redundant information; it depends a lot on whether or not you read my blog regularly. I didn't want people wandering in from the carnival to be totally confused (mostly as to my pain history and type) so I wanted to include at least a quick summary. It'll probably clear up some things that you might not have known before; most readers haven't been here from the beginning, after all!
For a brief summary of my chronic pain - I have chronic daily migraines. I was diagnosed with migraines when I was 20, and had them once or twice per month. The summer of 2004, they began to be more and more frequent, and lasting longer and longer, until in November 2004 they were everyday. Many things have been ruled out, including Medication Overuse (or Rebound) Headaches. I have tried treatments, many pills, etc., etc. You get the idea, especially if you have chronic pain yourself. I wake up every day in pain, and it continues until I go to sleep at night. Most days I rate the pain a 6 or 7 (out of 10). The latest development is that I am trying Kadian, a painkiller, for daily pain relief. The dose I'm at now is not nearly enough. It helps, but not much. I am continuing to see a migraine/headache specialist, as well as the Pain Clinic, and will see a Sleep Clinic (for the first time) this week.
The pain rating scale is one of my least favorite things, mostly because it's entirely subjective. And I find myself double-guessing myself, thinking how much worse pain *could* be. I know that the worst pain possible is not the pain I've felt so far, but the worst pain I've felt so far was a migraine. But then, the pain scale needs to be subjective, so that doctors can understand how we are experiencing our pain. In any case, some things that exacerbate the pain are; lack of sleep, fasting or eating late, low barometric pressure (storm coming), my food triggers (chocolate and feta cheese), and anything that gets my blood moving faster (running, etc.), loud noises and bright/flashing lights.
With all that in mind, it's probably obvious that barring financial disaster, I would avoid working. I am lucky enough to be married to a wonderful man who can support both of us on his salary. I dropped out of school after attending one semester with The Headache (we'll just call it that - not the regular, once in a while migraines, the all the time migraine). I did poorly, and felt awful. I hoped that things would be resolved quickly (ha!) and I'd be back in school and at work quickly. At the time, I worked as a receptionist and secretary in the school's library. This was your basic secretary responsibilities, including typing, transcribing, answering phones, welcoming patrons, etc. I liked it a lot. I enjoyed the things we worked with and the people I worked with, as well. Most of my jobs (post high school) were of the secretary/receptionist variety, excluding two summers I worked as a life guard.
When i was working and attending school, my main difficulties were:
1 - being able to concentrate on something other than the pain
2 - nausea and being worried about throwing up at my desk
3 - trying to be cheerful and pleasant when in so much pain
4 - waking up early after a difficult (late) night
5- one of my most unpredictable triggers is low barometric pressure (the time just before a storm comes), my headache is at its worst during these times.
Most of these speak for themselves. I think most people know what migraines are and what they're like. Hopefully no one here has the idea that it's 'just a headache'. This is a good article to read if that's the case. Unfortunately there is not only a great deal of pain, there is also nausea, and sensitivity to noise and lights. It is difficult to go grocery shopping for a short while because of these factors, much less spend a normal 8 hours at a job. The Headache has change my life in so many ways, working is only one facet of my life - exercising, sleep, eating, time in the sun; these things all must be limited or regulated to keep The Headache under some kind of control.
So then what it would take for me to go back to work? Long story short? Reliable daily pain relief. If this comes from preventative medicines, great. If it has to come from painkillers until I can find an effective preventative medication, then okay. I have relatively good control over the nausea -- many tricks and as a last resort, a prescription medication. The problem is that we've been searching for a preventative these past 3 years without any real luck. There are only a handful of drugs FDA approved for migraine prevention, but there are about 100 medicines used to prevent migraines. For a list, see here. If my pain were well under control, I should be able to handle the other things that come my way; the added visual and aural stimuli seem to increase my pain levels, but hopefully we (my doctors and I) could figure that out as well.
Concerned friends and family ask me all the time when I'll be able to get back to work - unfortunately, I don't know any more than my doctors do. It's a lot of trial and error right now. Many preventative drugs require a 3 month trial, so it's slow going at times.
On this Labor Day, I am grateful for those who work - and continue to hope that this time next year, I'll have rejoined the workforce, and be feeling up to working a 40 hour week again.
Please visit the blog carnival at How to Cope with Pain. I'm excited to read the other entries!
The information posted here should not be viewed as medical advice, but as my experiences.
Labels: blog carnival, pain issues, working
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Muum had this to say:
This post has been great to help understand a bit about what you are dealing with. You have my constant admiration and prayers for you!
- 6:31 AM
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had this to say:
Thanks for sharing your story, and reminding us that finding comfort, for most of us, is a slow process.
Thanks for contributing to the carnival!- 9:37 AM
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Unknown had this to say:
Thanks for sharing your story. I'd say you are "working" in creating this blog. It might not be a money maker, yet, but this is the beginning of developing skills that allow you to "work" when you can and pay attention to your health challenges when you have to. Good for you. Keep going. You're doing a great job. Rosalind@KeepWorkingGirlfriend.com
- 10:28 AM
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Matthias Weinberger had this to say:
This comment has been removed by the author.
- 1:15 PM
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Matthias Weinberger had this to say:
There is an evidence based treatment option in the works - have a look at this TED talk:
http://www.ted.com/index.php/talks/view/id/57
I know of several Universities here in Germany that are conducting trials using the same underlying principle to treat migraines and similar conditions.
Maybe there's a clinic near you that could use you as a willing subject?
Matthias- 1:16 PM
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jeisea had this to say:
I know your pain as I've had migraines for over 30 years. When I developed a pain syndrome, migraines made things so much worse. One of my specialists told me about a European study has shown vitamin B2 can prevent migraine. I take less than the study suggested and for me it's been a miracle. It prevents migraine and if I do get a headache, it's less intense. If I run out or forget to take the B2 I get a migraine within 48 hours. I don't take other medication so it must be B2 helping. My specialist also told me to sip dark grape juice if I do get a headache. It is riboflavin/B2 and has the effect of settling nausea. You will find information on this by googling "B2 migraine". I'm giving you a link that might be helpful.
http://72.14.253.104/search?q=cache:Tu34caqecDMJ:www.aan.com/elibrary/neurologynow/%3Fevent%3Dhome.showArticle%26id%3Dovid.com:/bib/ovftdb/01222928-200703030-00023+vitamin+b2+migraine+neurology+2007&hl=en&ct=clnk&cd=9&gl=au
Neurology Now: Your Neurologist Gets Migraines -- American Academy of Neurology
jeisea
http://www.crps-rsd-a-better-life.blogspot.com- 1:07 AM
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kimberlie had this to say:
I get a migraine every few weeks, and with this being this case i am able to have a sick day. I had never thought of the implications of a daily migraine and how it would affect general life and duties.
I cant imagine how you cope. You must be very stong!- 11:12 PM
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Migraine Chick had this to say:
Thank you so much for sharing this! I'm going through a lot of the same things right now trying to work with daily migraine. I totally agree with your main difficulties, especially trying to be cheerful and pleasant when you are in pain.
- 5:34 AM
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Windlost had this to say:
Emily, thank you for that wonderful post. It was so well-written and full of great explanations and observations. I felt like I was reading my own diary. Our life and our pain and its impact is so similar. Luckily, my pain levels vary a lot day-to-day and I don't have full-blown migraine as much, but I often have a very bad headache. I have managed to work, as you know, but as you also know, for you it was impossible and for me it has been barely possible, only because I think my pain level is slightly lower than yours. It is all barely manageable some days, but I do manage where your pain level prevented you. However, my job and career are impacted. I don't know which is worse- being on disability or working with such bad pain. I can't function as highly or as efficiently and I tend to avoid work/people/extraneous conversations, debate, excess visual and aural stimulus. Basically I am at the office but please don't bother me b/c I have a headache from hell. So there is a negative impact in that I do not perform perhaps at the level I normally would, which can look bad too, like you are not driven or ambitious or something. Ugh. Anyway, I do relate to it all, except maybe the extremes of the pain you feel. Luckily I have 5-6/10 most days but only have those bed-ridden headaches about 3 days a month. It still all sucks.
I hope the medication battle works for you. And that you get your life back....!! It is clear you have so many gifts to share with the world - one wonders why you got this cross to bear!- 4:26 PM
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Migraine Chick had this to say:
Can you share your many tricks over the nausea with us? So far mine only consists of drinking ginger ale..
- 5:08 AM
