Maggie is promoting this cause and I think that it is worth a look for all people with migraines or even if you just believe in the cause.
http://www.campaignengineroom.org.uk/botox-for-chronic-migraine-sufferers
Thursday 20 December 2012
Monday 17 December 2012
Botox for Migraines - The Results, part 1
I had Botox treatment for my migraines nearly 3 weeks ago (http://anothermigraine.blogspot.co.uk/2012/11/botox-for-migraines-part-2.html) and it's time to report back on how it went.
So let's start from where we left off. At the end of my last post I reported that I had a migraine threatening to come out. Well the bad news is that it did turn into a full migraine. The good news is that following a triptan it disappeared within 15 minutes. This is much better than the normal reaction I get to taking triptans. Normally the migraine will get worse and then about an hour later I realise that it is fading and has gone. As I was told that the effects of the Botox could take up to 2 weeks to fully work, I saw this as a really good sign that it was working.
Day two was clear which was also a good sign. At that point I was getting 25 days of pain ever 30 with 15 of them being migraines and the others just being background pain. I was long overdue a clear day by this point as I had just gone 11 days straight with either background or migraine, so this wasn't conclusive proof that the Botox had worked, but certainly another good sign.
Day three and a migraine was forcing it's way out, but it disappeared before it really started. Day four was another clear day so we are down to 23 days of pain and 13 migraine in the last 30. This is starting to look good. I was getting a little excited that this might actually work. I mean, I had only been waiting for the treatment for the last 14 months.
Day five and another migraine trying to get out only this time it succeeds. Strangely it is on my left side again, just like the last one. This is unusual as most of my migs are on the right. I hate left sided ones as I am not used to dealing with the pain on that side. It's funny how your body adjusts to cope with situations. The other strange this about this migraine is that it was all in my shoulders and not so much in my head. My wife offered to massage them as this often helps to relieve the pain. But, the second she touched my shoulders, I hit the roof! Wow they was sensitive. A sort of buzzing, bruised pain.
The good news was the the triptan got rid of it really quickly again. The bad news was that the next day I got another really sensitive shoulder pain, but not quite migraine. A nurofen took the pain away which made a nice change as usually, normal over the counter medications never touch my migraines, so again, this wasn't such a bad development.
That is until the migraines didn't stop coming. The shoulder pain thankfully died down, but was replaced with my normal migraines. Let's fast forward 2 weeks to today and I am up to 28 days of pain out of 30 with 14 being migraines. Interesting that the migraines are slightly down and it is the background pain that is up. The only thankful thing is that my migraines don't incapacitate me. I am still able to function, most of the time, if a little groggier and so I have been told, at time a little more grumpy. But at least I don't have to lie in a darkened room with a flannel over my head, and I have heard of those who do!
I put a call in to the doctor last week and his secretary told me that he was away until today so she will speak to him to see if there is anything that he can suggest that might help until I can have the treatment again. Oh yes dear reader, I am not giving up that easily. Attempt one may have dismally failed, but the next time they can up the dose and I am going in armed with more information. I can't have the next treatment for 3 months after the first, so I have until the end of February to wait, so stay tuned until then and I will update you...
(Sadly, due to the amount of false & spam comments, as of March 2015 I am not allowing any more comments to be placed against this single post. Feel free to contact me if you have any genuine comments to make).
(Sadly, due to the amount of false & spam comments, as of March 2015 I am not allowing any more comments to be placed against this single post. Feel free to contact me if you have any genuine comments to make).
Wednesday 28 November 2012
Botox for Migraines Part 2
IT has been a while since my last post, sadly because there hasn't been a lot to update you on... Until now. Back in January I reported that I had been accepted for the Botox treatment and that they were waiting on approval. You can read all about it here... http://anothermigraine.blogspot.co.uk/2012/01/botox-for-migraines-part-1.html
Botox was finally approved by NICE on 27th June this year. The clock started to tick and local health authorities (more commonly known as Primary Care Trusts (PCT)) had three months to arrange for funding to make the treatment available to the general public. So that would be the end of September then? Well yes it would! So why am I only blogging about this in November? No, it's not because I am lazy and didn't get around to it. It's because... well let me tell you why.
September came and went as did a number of calls to the hospital. Still no funding. They were waiting as well. Then came an email from Migraine Trust asking for people who have not yet received an appointment. If not, then they run an advocacy service who you should contact to ask for help. So I gave them a ring. And they pointed out that the PCT has a legal obligation to provide this service by the end of September. The advocacy service contacted my local PCT under the freedom of information act to ask why funding had not yet been provided.
Call me a cynic, but two weeks later approval was given. Two weeks after that, the appointment letter dropped on my doorstep. Shock horror and surprise! Appointments with the NHS are normally for months in advance. This one was for next Tuesday. A week away. Seven days! Wow. The day before, curiosity got the better of me and I looked on-line to see how the process works.
"Prepare myself for it," I thought. I forgot that I have a phobia of needles. My legs almost went from beneath me when the on-line doctor said,
"This one will crunch a bit". Eeek!!!
So Tuesday came... and stayed... and dragged on... then I got a migraine which wouldn't go... and then it was 7pm and I was in the waiting room completing a brief questionnaire. Five minutes later I was called in to see the doctor. I was the first one on the list for the official treatment. The doctor has been trialling it for a year on 60 other patients, so I wasn't the first person he had treated, which stopped me bolting for the door there and then. It took the doctor longer to draw the Botox into the needles than it did to inject it into my head.
I know, I know. This is the bit that you have been waiting for the whole time. The info on how I got there is all well and good, but how did it go? What did it feel like? And more importantly, has it worked yet?
If you are feeling squeamish, then probably best miss out the next paragraph. You have been warned!
Botox was finally approved by NICE on 27th June this year. The clock started to tick and local health authorities (more commonly known as Primary Care Trusts (PCT)) had three months to arrange for funding to make the treatment available to the general public. So that would be the end of September then? Well yes it would! So why am I only blogging about this in November? No, it's not because I am lazy and didn't get around to it. It's because... well let me tell you why.
September came and went as did a number of calls to the hospital. Still no funding. They were waiting as well. Then came an email from Migraine Trust asking for people who have not yet received an appointment. If not, then they run an advocacy service who you should contact to ask for help. So I gave them a ring. And they pointed out that the PCT has a legal obligation to provide this service by the end of September. The advocacy service contacted my local PCT under the freedom of information act to ask why funding had not yet been provided.
Call me a cynic, but two weeks later approval was given. Two weeks after that, the appointment letter dropped on my doorstep. Shock horror and surprise! Appointments with the NHS are normally for months in advance. This one was for next Tuesday. A week away. Seven days! Wow. The day before, curiosity got the better of me and I looked on-line to see how the process works.
"Prepare myself for it," I thought. I forgot that I have a phobia of needles. My legs almost went from beneath me when the on-line doctor said,
"This one will crunch a bit". Eeek!!!
I know, I know. This is the bit that you have been waiting for the whole time. The info on how I got there is all well and good, but how did it go? What did it feel like? And more importantly, has it worked yet?
If you are feeling squeamish, then probably best miss out the next paragraph. You have been warned!
Ok, here we go. It hurt. Sorry to burst any bubbles, but it hurt. The needles are really thin, so think diabetic needles rather than blood giving needles. They are only put in for a split second each, after all I got thirty injection in about four minutes. But they stung. Some more than others, but they all stung. Some of them bled as well. The doctor mopped most of the blood up (ok, I exaggerate slightly for dramatic effect), but he did miss one on the side of my head and the dried circle of blood made it look a little macabre by the time I got home. That wasn't the worst of it. Do you remember the on-line doctors comments of a few paragraphs ago (come on, do try to keep up) and that I had a migraine at the time? When injecting on my migraine side (...double squeamish alert...) the needle crunched through the gristle each time it was pushed in. It didn't do it on the left of my head, just the right. That meant that I could hear as well as feel the needle as it went in crunch and out... in crunch and out... in crunch and out. I think you get the picture now.
I have to admit that when he finished, with a flourish of four injections in my upper back and shoulders, I was feeling a little queasy and more than a little faint. The migraine didn't help, but the doctor noticed that the colour had somewhat drained from my face and escorted me to a nearby bed where I lay to recover. But fear not dear reader as a few minutes and a cup of water later, I was back on my feet. And that was it.
"Thank's very much, I'll make an appointment for you in three months time." and I was out of the door and wandering, poor punctured soul and all, back to my car.
For the techy amongst you I received 150mg of Botox, 5mg at each injection site. If that doesn't work then at my next appointment they will up it to 200mg. If that doesn't work then it is not suited to me, but we're not focussing on that possibility right now. If it does work then we can look at being more specific in where we inject to try and target the more common areas that my migraines strike and not inject so much elsewhere. 100mg works for some people so we would also explore reducing the dosage slightly.
I know, I know. This is the bit that you have been waiting for the whole time. Um, didn't you say that further up...? I know, but this is the really important bit. Have my wrinkles gone?
Sorry to disappoint you but I didn't really have that many to begin with so no. Also, I only had the treatment yesterday and it can take up to two weeks for it to work (that's for diminished wrinkles and migraines). What I can tell you is that by the time I got home, I could still feel the stinging in some of the injection sites, but not as bad and some of them felt a bit bruised. But I was warned that this might be the case beforehand and had to sign that I agreed to it.
Today the stinging has completely gone and has been replaced by an itchy feeling on three of the sites. Again, this was on the list of after effects. It feels ever so slightly tight and numb on the sides of my head. Oh and I have a migraine that is trying to come out. But as yes hasn't managed it. So who knows, maybe it has worked already. Or is that asking for too much...?
Stand by for Botox Part 3 coming to all good screens near you soon where I will tell you whether it has actually worked or not.
Monday 30 January 2012
Botox for Migraines part 1
Following on from a recommendation from a Migraine Action desk based assessment at work (contact them for more information as it was really interesting and I learned a lot). So, botulinum toxin injections huh? What's that all about. To start with they are more commonly knows as Botox. Before the appointment I started searching the net for information on Botox for migraines and there is a lot of it out there, so I won't repeat it all here (hey, I'm not going to do all of the donkey work for you!)
Oh okay then, if you insist, I will give you a brief, non medical so sorry about any little inaccuracies, summary. You get about 31 injections around the head, so it's not for the fainthearted. Botox famously gets rid of wrinkles by relaxing muscles. People who were having Botox for cosmetic purposes found that they were not only looking smoother, but they weren't getting as many migraines. An opportunity lay in waiting for the manufacturers and a few proper medical trials later (nearly 70% of those treated with Botox had a 50% reduction in the number of migraines compared with before the trial) hey presto here we have a miracle cure. Ok, so it only lasts for between 3 to 6 months, but that sounds good enough for me.
Back in October 2011 I had a very positive consultation with my local NHS specialist. He said that based on what I had told him I was an ideal candidate to qualify for Botox on the NHS. You have to have at least 15 chronic headaches per month with at least 8 of them being a migraine. I hadn't kept a diary for years so wasn't sure whether I would qualify for that. But, he was confident that I would and said "if you are close, then between you me and these four walls, just tweak the figures a little."
Um, "tweak?" Is that ethical, but then do I want the treatment and what do I care as long as I get the treatment! I was told to come back again in 3 months with the diary by which time he was hoping to have full funding.
So off I went and immediately set up a simple diary. 0 for no headache, 1 for chronic background headache, 2 for migraine and 3 for severe migraine. Now I know that this is all relative, but I thankfully don't get many severe migraines and I didn't need to separate them for the purposes of this diary, but thought it would be interesting for my own purposes.
To my surprise the diary didn't need any tweaking of any kind. Right from the start it showed a pattern that has continued until today. I get 19 days per month with chronic background pain of which 9 of them are migraines. So I easily qualify for the treatment as was eager to attend my second appointment which, as it happens, was last week. I had got it into my mind that at the very least, I would get a date for the injections and he might even do the injections there and then (for some reason I had got it in my head that there were only 8 injections and not over 30). This is the first treatment that I have genuinely been excited about for a long time. Sadly, the appointment was a little quicker than I was hoping for. I showed him my diary with great pride; went over my medication history again; and he told me that he still hadn't received funding. He gave me an open appointment, which is something I suppose, and said that I was to phone in 2 months time to see if funding had been received yet.
Disappointment. Dejection. Thesaurus, find me some more words beginning with "d"... ah thank you, depressed, demoralized, despondent, dimple, um sorry what?...
So I go back to Migraine Action and low and behold, there is a news article (http://www.migraine.org.uk/index.php?sectionid=1586) stating that we are all waiting for NICE (National Institute of Clinical Excellence) to approve the treatment. Hey, I'm not going to tell you about it here so go read the article already. We can wait....
Anyhoo, that's pretty much where we are. I contacted some local cosmetic surgeries who dithered and spluttered before telling me that of course I could have Botox and for the sum of £400 for 1 treatment it might even cure my migraines for me as well. By the way, don't try this at home folks. For migraine cures always use a proper medically trained practitioner. I have put my name down for the Allagron Botox trial which seems to have been going on for ages but haven't hear back yet and have also put my name down for an alternative trial (more on that in another blog if it comes off).
I hear through the grapevine (I know somebody who knows somebody at NICE) that NICE should be publishing guidance by the end of May, but you didn't hear that from me!
Until then, I guess that we all have to wait a little longer.
Oh okay then, if you insist, I will give you a brief, non medical so sorry about any little inaccuracies, summary. You get about 31 injections around the head, so it's not for the fainthearted. Botox famously gets rid of wrinkles by relaxing muscles. People who were having Botox for cosmetic purposes found that they were not only looking smoother, but they weren't getting as many migraines. An opportunity lay in waiting for the manufacturers and a few proper medical trials later (nearly 70% of those treated with Botox had a 50% reduction in the number of migraines compared with before the trial) hey presto here we have a miracle cure. Ok, so it only lasts for between 3 to 6 months, but that sounds good enough for me.
Back in October 2011 I had a very positive consultation with my local NHS specialist. He said that based on what I had told him I was an ideal candidate to qualify for Botox on the NHS. You have to have at least 15 chronic headaches per month with at least 8 of them being a migraine. I hadn't kept a diary for years so wasn't sure whether I would qualify for that. But, he was confident that I would and said "if you are close, then between you me and these four walls, just tweak the figures a little."
Um, "tweak?" Is that ethical, but then do I want the treatment and what do I care as long as I get the treatment! I was told to come back again in 3 months with the diary by which time he was hoping to have full funding.
So off I went and immediately set up a simple diary. 0 for no headache, 1 for chronic background headache, 2 for migraine and 3 for severe migraine. Now I know that this is all relative, but I thankfully don't get many severe migraines and I didn't need to separate them for the purposes of this diary, but thought it would be interesting for my own purposes.To my surprise the diary didn't need any tweaking of any kind. Right from the start it showed a pattern that has continued until today. I get 19 days per month with chronic background pain of which 9 of them are migraines. So I easily qualify for the treatment as was eager to attend my second appointment which, as it happens, was last week. I had got it into my mind that at the very least, I would get a date for the injections and he might even do the injections there and then (for some reason I had got it in my head that there were only 8 injections and not over 30). This is the first treatment that I have genuinely been excited about for a long time. Sadly, the appointment was a little quicker than I was hoping for. I showed him my diary with great pride; went over my medication history again; and he told me that he still hadn't received funding. He gave me an open appointment, which is something I suppose, and said that I was to phone in 2 months time to see if funding had been received yet.
Disappointment. Dejection. Thesaurus, find me some more words beginning with "d"... ah thank you, depressed, demoralized, despondent, dimple, um sorry what?...
So I go back to Migraine Action and low and behold, there is a news article (http://www.migraine.org.uk/index.php?sectionid=1586) stating that we are all waiting for NICE (National Institute of Clinical Excellence) to approve the treatment. Hey, I'm not going to tell you about it here so go read the article already. We can wait....
Anyhoo, that's pretty much where we are. I contacted some local cosmetic surgeries who dithered and spluttered before telling me that of course I could have Botox and for the sum of £400 for 1 treatment it might even cure my migraines for me as well. By the way, don't try this at home folks. For migraine cures always use a proper medically trained practitioner. I have put my name down for the Allagron Botox trial which seems to have been going on for ages but haven't hear back yet and have also put my name down for an alternative trial (more on that in another blog if it comes off).
I hear through the grapevine (I know somebody who knows somebody at NICE) that NICE should be publishing guidance by the end of May, but you didn't hear that from me!
Until then, I guess that we all have to wait a little longer.
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