If television advertising has taught me one thing over the past few years, it's that headaches are evil red pulsating blobs inside your head, and that if you have one, you can cure it with NUROFEN and that NUROFEN will heal all your achy ills and NUROFEN PLUS is there for when you have an exceptional amount of pain that needs to be killed, because humans are WEAK and liable to developing red pulsating headblobs at any moment.
I think that advert was for Nurofen, anyway...
If actual real life has taught me anything, it's that you should go to the doctor if you have headaches regularly, and also that being allergic to paracetamol is annoying if you're then put on medication which means you can't take aspirin or ibuprofen.
If the BBC has taught me anything this week, it's that painkillers can actually cause headaches, which I had no idea about. We all know you should be careful not to OD on paracetamol (but did you know that paracetamol is actually the commonest drug overdose in the UK, and accounts for a massive 48% of all poisoning admissions to hospital?), yet in fact even at non-toxic doses painkillers can cause what are known as medication overuse headaches. NICE has recently issued new guidance to health professionals in England and Wales on the subject.
If headaches get worse after a couple of months of regular use of painkillers, it's possible that they have developed into medication overuse headaches, and unfortunately the only cure is to go cold turkey and see if they improve - but at first they'll get worse. Also known as rebound headaches, they can be a serious problem, often occurring in people who already suffer from migraine or other chronic headache conditions, and who may have no idea that they're taking painkillers too frequently.
Tuesday, 25 September 2012
Thursday, 20 September 2012
The (Im)Patient Patient
I've always had a problem with the phrase "caught like a rat in a trap". I feel it could be improved upon. Rats are smart. Rats, once caught, sometimes make it out of traps.
But they never make it out of cats.
I currently feel much like a rat in a cat. It has now been six weeks since I had an injection of lanreotide. They only last for a month. During that month I did feel much better. At one point I ran upstairs and my heartrate barely increased, even though I hadn't taken my medication that day. For me, that is a medial coup indeed.
Alas, those halcyon days are gone. I'm back to taking two or three propranolol tablets a day to keep my heartrate as normal as possible. My moments of hypoglycaemia (brought on by the lanreotide injections) have been replaced by finding the six flights of stairs to my desk much more challenging in the morning.*
As you can imagine, I am chafing under this new and irritating regime, rendered all the more irritating by the fact that if my stupid former GP's surgery didn't have such nonsensical rules then I would have had my second injection by now and all would be hunky dory. Consequently, I'm calling the hospital every week to find out what's going on. I contact one of the nurses in the endocrine department, who is lovely, and then we have a mutual guilt festival, whereby she feels guilty for not being able to give me good news and I feel guilty for making her feel guilty considering that it's not her fault in the slightest.
I called last Wednesday, at the five-weeks-since-last-injection mark, and the nurse said that she could confirm all the paperwork had finally been submitted, and she seemed optimistic that it would get approved quickly and I'd get the injection soon. I called again today but the atmosphere of optimism had sadly been replaced with uncertainty over exactly how long this would take. Apparently, if your life is not immediately threatened by the lack of medication, then it doesn’t matter that you're symptomatic and the tumour in your head could well be growing happily like an evil, greedy mushroom.** You just have to be patient.
If ever I had wondered how the word "patient" had come to have two such different meanings - meaning in the first instance, a calm endurance of difficulty, and in the second, a person receiving medical treatment - I stopped wondering some time ago, because it seems that extreme feats of patience are required pretty much as soon as you become a patient.
_________________________________________________
*I should point out that my desk is in an office which is accessed by climbing six flights of stairs and then walking along a corridor. I don't just have a desk sitting atop a massive staircase, although that would be quite awesome.
** I don't like mushrooms.
But they never make it out of cats.
I currently feel much like a rat in a cat. It has now been six weeks since I had an injection of lanreotide. They only last for a month. During that month I did feel much better. At one point I ran upstairs and my heartrate barely increased, even though I hadn't taken my medication that day. For me, that is a medial coup indeed.
Alas, those halcyon days are gone. I'm back to taking two or three propranolol tablets a day to keep my heartrate as normal as possible. My moments of hypoglycaemia (brought on by the lanreotide injections) have been replaced by finding the six flights of stairs to my desk much more challenging in the morning.*
As you can imagine, I am chafing under this new and irritating regime, rendered all the more irritating by the fact that if my stupid former GP's surgery didn't have such nonsensical rules then I would have had my second injection by now and all would be hunky dory. Consequently, I'm calling the hospital every week to find out what's going on. I contact one of the nurses in the endocrine department, who is lovely, and then we have a mutual guilt festival, whereby she feels guilty for not being able to give me good news and I feel guilty for making her feel guilty considering that it's not her fault in the slightest.
I called last Wednesday, at the five-weeks-since-last-injection mark, and the nurse said that she could confirm all the paperwork had finally been submitted, and she seemed optimistic that it would get approved quickly and I'd get the injection soon. I called again today but the atmosphere of optimism had sadly been replaced with uncertainty over exactly how long this would take. Apparently, if your life is not immediately threatened by the lack of medication, then it doesn’t matter that you're symptomatic and the tumour in your head could well be growing happily like an evil, greedy mushroom.** You just have to be patient.
If ever I had wondered how the word "patient" had come to have two such different meanings - meaning in the first instance, a calm endurance of difficulty, and in the second, a person receiving medical treatment - I stopped wondering some time ago, because it seems that extreme feats of patience are required pretty much as soon as you become a patient.
_________________________________________________
*I should point out that my desk is in an office which is accessed by climbing six flights of stairs and then walking along a corridor. I don't just have a desk sitting atop a massive staircase, although that would be quite awesome.
** I don't like mushrooms.
Tuesday, 18 September 2012
IMFW: Scintillating Scotoma
Up until recently, I had never heard of scintillating scotoma, but my boyfriend is an occasional sufferer - and although that is not so fun for him, it's certainly a handy suggestion for an Interesting Medical Fact of the Week!
The word scintillating comes from the Latin scintillare - to sparkle, glitter, gleam or flash. The word scotoma comes from the Greek for darkness. So at first etymological glance, it would appear that a scintillating scotoma is something of an oxymoron.
Medically speaking, a scintillating scotoma is a symptom which often precedes the onset of migraine, although it can also appear as an isolated symptom without headache. Wikipedia describes it as follows:
Scintillating scotoma usually begins as a spot of flickering light near or in the center of the visual fields, which prevents vision within the scotoma. The scotoma area flickers, but is not dark. The scotoma then expands into one or more shimmering arcs of white or colored flashing lights. An arc of light may gradually enlarge, become more obvious, and may take the form of a definite zigzag pattern, sometimes called a fortification spectrum, because of its resemblance to the fortifications of a castle or fort seen from above.
The visual anomaly results from abnormal functioning of portions of the occipital cortex, at the back of the brain, not in the eyes. Symptoms typically appear gradually over 5 to 20 minutes and generally last fewer than 60 minutes, leading to the headache in classic migraine with aura, or resolving without consequence in acephalgic migraine.
Sounds kind of pretty, right? Unfortunately, even if you don't get a headache or other symptoms, it does massively mess with your vision until it resolves. If you search online, you can see a selection of artist's impressions of what scintillating scotoma can look like to sufferers:
The word scintillating comes from the Latin scintillare - to sparkle, glitter, gleam or flash. The word scotoma comes from the Greek for darkness. So at first etymological glance, it would appear that a scintillating scotoma is something of an oxymoron.
Medically speaking, a scintillating scotoma is a symptom which often precedes the onset of migraine, although it can also appear as an isolated symptom without headache. Wikipedia describes it as follows:
Scintillating scotoma usually begins as a spot of flickering light near or in the center of the visual fields, which prevents vision within the scotoma. The scotoma area flickers, but is not dark. The scotoma then expands into one or more shimmering arcs of white or colored flashing lights. An arc of light may gradually enlarge, become more obvious, and may take the form of a definite zigzag pattern, sometimes called a fortification spectrum, because of its resemblance to the fortifications of a castle or fort seen from above.
The visual anomaly results from abnormal functioning of portions of the occipital cortex, at the back of the brain, not in the eyes. Symptoms typically appear gradually over 5 to 20 minutes and generally last fewer than 60 minutes, leading to the headache in classic migraine with aura, or resolving without consequence in acephalgic migraine.
Sounds kind of pretty, right? Unfortunately, even if you don't get a headache or other symptoms, it does massively mess with your vision until it resolves. If you search online, you can see a selection of artist's impressions of what scintillating scotoma can look like to sufferers:
Friday, 14 September 2012
One Year Later
It's been precisely one year since I started this blog! Here is a link to my first ever post. Ah, fond memories.
It's actually a bit of a fluke for me to be posting this, I knew I started writing about a year ago and have been meaning to check the precise date for weeks and haven't got around to it... until today. Which happens to be the one-year anniversary of the day I started boring the internet to tears with an excess of information about my pituitary tumour. And other people's pituitary tumours. And the history of pituitary tumours.
Not entirely sure how this anniversary should be celebrated, although obviously getting wasted is always a classic option. One year ago I was still getting over surgery; now I'm waiting for another surgery.* In September 2010, this blog got a grand total of 157 views; so far this month I've had just under 1,000 and we're not even halfway.
Ok, that's getting dull fast. I'll just say happy blogoversary, thanks for reading, and please force your friends to do the same. Or, if you've just started reading and you don't like what you see, your enemies.
Ciao!
__________________________________________________
*And, indeed, for the NHS to get its fat ass in gear and give me the medication I need.
It's actually a bit of a fluke for me to be posting this, I knew I started writing about a year ago and have been meaning to check the precise date for weeks and haven't got around to it... until today. Which happens to be the one-year anniversary of the day I started boring the internet to tears with an excess of information about my pituitary tumour. And other people's pituitary tumours. And the history of pituitary tumours.
Not entirely sure how this anniversary should be celebrated, although obviously getting wasted is always a classic option. One year ago I was still getting over surgery; now I'm waiting for another surgery.* In September 2010, this blog got a grand total of 157 views; so far this month I've had just under 1,000 and we're not even halfway.
Ok, that's getting dull fast. I'll just say happy blogoversary, thanks for reading, and please force your friends to do the same. Or, if you've just started reading and you don't like what you see, your enemies.
Ciao!
 |
| Have a picture of a monopod from the 1473 Nuremberg Chronicle. Because why not? |
*And, indeed, for the NHS to get its fat ass in gear and give me the medication I need.
An Open-Source Cure?
Kudos to my lovely boyfriend for this very interesting link to a website created by an Italian man with brain cancer, who requested copies of his medical files from his hospital in order to send to other hospitals and doctors for their opinions, only to find that they were in proprietary formats which he could not open on his computer. Being computer savvy, he managed to convert them into open formats so that he can share his information with everyone, online. And he's posted them on his website.
It might sound weird, this idea of posting medical records online, when these are documents that we're used to treating with the utmost confidentiality, but already he has had responses from doctors - and the idea is that everyone is encouraged to use the data to create a cure, whether that's a doctor suggesting treatment, an artist creating artworks, videos, poems... you name it. Other people with similar conditions can send in their own data, if they wish, to be added to the site.
The author of the website had some very interesting thoughts about how the way in which his data is treated parallels the way in which his disease has been treated:
"The data formats which I was "forced" to hack is in a peculiar state of harmony with the common definition of "disease/illness".
The definition of "diseases" is "reserved" to doctors. Often using words which we don't understand and, most important of all, touching only a part of the human condition, which is made from body, but also of spirit and sociality.
The DICOM format is open, yes, but in a very "peculiar" condition of openness: it is like the openness of the words which they use to tell you about your health condition, and with which they descrive and actuate their version of the "cure": you can't understand it, you can't reuse it, you can't combine it with other possibilities. It is thought for "experts" and "professionals" (of one single type), leaving little space for other possibilites for expression and socialization."
It's interesting to consider the possibility that the sacred doctrine of doctor-patient confidentiality may, in some cases, end up mitigating against patients having the ability to take charge of their own healthcare, or seek the widest possible range of medical opinions on their condition. Now that so many hospital systems and even procedures are digitised, there's clearly a balance to be struck between protecting patients' private information, and making it so inacessible that patients are unable to view their own data.
Historically, medical education and knowledge has been very much the preserve of the privileged few, and patients weren't necessarily expected to understand their own conditions. With the rise of the internet, it's so much easier for patients to be informed about their own illness - some might say too easy - and thus it seems terribly ironic that the same medium enabling greater patient choice and freedom should simultaneously be creating new and unwelcome restrictions on their ability to use their own data in whatever way they desire.
Posting your medical records on the internet for all to see may not be everyone's cup of tea. But it should still be an option if that's what you want to do.
Check it out: http://artisopensource.net/cure/
It might sound weird, this idea of posting medical records online, when these are documents that we're used to treating with the utmost confidentiality, but already he has had responses from doctors - and the idea is that everyone is encouraged to use the data to create a cure, whether that's a doctor suggesting treatment, an artist creating artworks, videos, poems... you name it. Other people with similar conditions can send in their own data, if they wish, to be added to the site.
The author of the website had some very interesting thoughts about how the way in which his data is treated parallels the way in which his disease has been treated:
"The data formats which I was "forced" to hack is in a peculiar state of harmony with the common definition of "disease/illness".
The definition of "diseases" is "reserved" to doctors. Often using words which we don't understand and, most important of all, touching only a part of the human condition, which is made from body, but also of spirit and sociality.
The DICOM format is open, yes, but in a very "peculiar" condition of openness: it is like the openness of the words which they use to tell you about your health condition, and with which they descrive and actuate their version of the "cure": you can't understand it, you can't reuse it, you can't combine it with other possibilities. It is thought for "experts" and "professionals" (of one single type), leaving little space for other possibilites for expression and socialization."
It's interesting to consider the possibility that the sacred doctrine of doctor-patient confidentiality may, in some cases, end up mitigating against patients having the ability to take charge of their own healthcare, or seek the widest possible range of medical opinions on their condition. Now that so many hospital systems and even procedures are digitised, there's clearly a balance to be struck between protecting patients' private information, and making it so inacessible that patients are unable to view their own data.
Historically, medical education and knowledge has been very much the preserve of the privileged few, and patients weren't necessarily expected to understand their own conditions. With the rise of the internet, it's so much easier for patients to be informed about their own illness - some might say too easy - and thus it seems terribly ironic that the same medium enabling greater patient choice and freedom should simultaneously be creating new and unwelcome restrictions on their ability to use their own data in whatever way they desire.
Posting your medical records on the internet for all to see may not be everyone's cup of tea. But it should still be an option if that's what you want to do.
Check it out: http://artisopensource.net/cure/
Saturday, 8 September 2012
Denied
My god! Apparently I haven't published a post since the 31st of August and it's now the 8th September! I am well behind schedule. In fairness, in the past week I have been to a wedding, started a new job and moved house so I feel like I have some kind of excuse for my laxness. On the other hand, excuse schmoose! Shame on me.
I do in fact have an update on my health situation, although not a particularly jolly one. Regular readers will remember that the NHS is proving remarkably loath to pay for the treatment that fixes me. I need regular injections, one every month, which normalise my hormone levels and make me feel much more chirpy, and also possibly stop the tumour growing which would be A Good Thing. They also cost about £750 a pop.
I got the first injection just over a month ago. The hospital then had a month to wrangle who was going to pay for the next one. I was booked in to go back on Wednesday morning for the next injection. Surprise, surprise, on Tuesday afternoon I got a phone call from one of the nurses informing me that they had not sorted out the funding issue and it would be "one or two weeks" before I could have the next one. Past experience would suggest that "one or two weeks" could be anything up to several months.
It's very frustrating, because the injections make such a difference to my symptoms. I massively cut down on the amount of medication I was taking for my heart, to the point where some days I didn't need it at all. I was sleeping better, my nails were better, my eyelashes got thicker (weirdly when my thyroid hormone levels are too high they tend to thin out!), everything was improving. And now I just have to wait, slowly feeling worse and worse all the time.
It's hard not to feel annoyed at my new GP for starting this whole mess by refusing to prescribe it despite letters from the hospital asking her to. I know that she was just playing by the book. But if the tumour in my head goes untreated and keeps growing and makes me more ill it's just more hassle for the NHS in the long run. I really don't care who pays for it. But can SOMEONE please get it sorted?
I do in fact have an update on my health situation, although not a particularly jolly one. Regular readers will remember that the NHS is proving remarkably loath to pay for the treatment that fixes me. I need regular injections, one every month, which normalise my hormone levels and make me feel much more chirpy, and also possibly stop the tumour growing which would be A Good Thing. They also cost about £750 a pop.
I got the first injection just over a month ago. The hospital then had a month to wrangle who was going to pay for the next one. I was booked in to go back on Wednesday morning for the next injection. Surprise, surprise, on Tuesday afternoon I got a phone call from one of the nurses informing me that they had not sorted out the funding issue and it would be "one or two weeks" before I could have the next one. Past experience would suggest that "one or two weeks" could be anything up to several months.
It's very frustrating, because the injections make such a difference to my symptoms. I massively cut down on the amount of medication I was taking for my heart, to the point where some days I didn't need it at all. I was sleeping better, my nails were better, my eyelashes got thicker (weirdly when my thyroid hormone levels are too high they tend to thin out!), everything was improving. And now I just have to wait, slowly feeling worse and worse all the time.
It's hard not to feel annoyed at my new GP for starting this whole mess by refusing to prescribe it despite letters from the hospital asking her to. I know that she was just playing by the book. But if the tumour in my head goes untreated and keeps growing and makes me more ill it's just more hassle for the NHS in the long run. I really don't care who pays for it. But can SOMEONE please get it sorted?
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