Tuesday, January 31, 2012

Am I the only one?

I suppose I've never talked about this before, but I'm wondering if it's normal to have shoulder pain after the stimulator surgery? I asked my neuro surgeon back in July and he said I should get into physical therapy to relearn how to hold my neck. Well, I did go to P.T. but I'm still having the pain. I'm positive it's because I always favor the left side of my neck where the wires run, which in turn puts a strain on my right shoulder. Some weeks are much worse than others, and right now it's driving me crazy. Tomorrow I'm going to buy a cervical collar to hold my neck straight. Fingers crossed I can find one that doesn't make me feel like I'm choking!

Other than that things are well. My stimulator is still chugging away. I was looking at my scar the other night and I think my battery is moving/rotating. It's hard to tell, but I imagine a revision will be in my future (hopefully not for a year or two). I know the battery moving wouldn't be such a big problem if I was skinnier, but I'm trying to tackle one issue at a time. It's funny because the idea of a revision used to really scare me. Now that I've been through it I realize it's just part of being on the cutting edge of medical technology and I am thankful for the pain free times.

A pain counselor I went to in December asked me how much pain I was in every day. I was sad to realize that I am still having headaches. The stimulator is working well, but a lot of the time it will take my pain from a 5-6 to a 1-2. That is a huge improvement. Shortly after my surgery I actually thought I was completely pain free, but I'm not. However, I can deal with a 1-2. I'm honestly not complaining, and the fact that I'm now in school (part time), doing dog agility with my dog (once a week for an hour), and volunteering at a law office (8 hours a week) is a testament to how far I have come with the help of my stimulator.

Pain killers are still a part of my life, but I have cut them in half and I'm stepping down slowly. Since I have been so busy lately my pain has been worse and it makes me worry that I will never really be able to live a life without some type of pain killer. My hope is that Tylenol will soon suffice. 

Thursday, January 19, 2012

Hemicrania Continua

I found this article and it made me laugh. Humor is a great tool when trying to deal with any chronic illness, but at the heart of what James is saying is good information. If you are having chronic, unrelenting headaches and your doctors have not considered Hemicrania Continua I recommend you check this out. I do not suggest being on Indomethican for longer than a month though, but it's a great tool for diagnosing this condition. 

From http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/
You’ve always wanted to misdiagnose hemicrania continua, but you haven’t been sure how to do it?  You’re in luck!  A recent study is bringing to our attention some of the most popular ways to mistreat and misdiagnose this disease, so you can choose your favourite next time a patient comes into your waiting room.
All right – joking aside.  I know that doctors do not want to misdiagnose, but for some reason with this one it’s happening.  And there’s good reason.  When a patient comes into a doctor’s office with a one-sided headache, it’s natural to think it’s migraine.

So what is it?

But hemicrania (one-sided) continua (you know – doesn’t stop) is different.  You’ve guessed one reason – it tends to be more steady than migraine.  It doesn’t change sides, as migraine pain often does.  Also, it doesn’t come and go like a headache from migraine usually would.  It stays and doesn’t go away, though it can go from moderate to severe.
Like cluster or migraine, it can be accompanied by congestion, and watery eyes.  A shrinking pupil or drooping eyelid is also a common symptom when the pain increases, making it look like cluster.
But, once again, unlike cluster or migraine (usually) the pain is continuous.
And with hemicrania continua, there’s a silver bullet that almost always works:  indomethacin (indometacin).  Indomethacin is a non-steroidal anti-inflammatory drug (NSAID), sold under brand names such as Indocin, Indorchron E-R, and Indocin S-R.
So with such a good treatment readily available, you may imagine it’s important to get the diagnosis right.

Popular Misdiagnosis

The study in Italy on hemicrania continua, published in February, found that all the patients with hemicrania continua had been given an incorrect diagnosis.  Here were the most popular ones:
Google Chart

The reality sets in when we find out what kinds of treatment these patients received.  Remember, treatment with indomethacin would have almost certainly been effective. On average, the patients had tried 3-4 different classes of drugs, most of which were, of course, ineffective.  36% had undergone ineffective invasive treatments as well!
Hemicrania continua is usually listed as a rare condition.  But looking at studies like this, it makes you wonder if more people should be trying indomethacin early on in their treatment.  It has been argued before that, though not always obvious, hemicrania continua isn’t that rare after all.
If you have a headache that tends to be on one side, this is something you should be talking to your doctor about.  An indomethacin trial will rule out the possibility of hemicrania continua, or it might just be the answer.