I have chronic migraines.
My GP has managed to piss me off.
I am on high dose fluoxetine and I asked to be given sumatripan. There is a small risk of a condition called serotonin syndrome when these meds are used in combination. [However there is a similiar risk when two SSRI's are prescribed at the same time, and he was happy to do that earlier this year as he put me on Mirtazapine with the same dose of Fluoxetine I am on now... ]
He has been refusing every time I ask [and I have asked for the last 4 times I have seen him, over about the course of a year] to give me this drug, despite me knowing the risks, researching the symptoms and being very clear I feel the cost benefit is worth it.
Last time I saw him he came up with a valid and interesting idea of using Riboflavin/B2 to tackle my migraines, he sold it to me as far safer, in fact, totally safe. Today I go to my pharmacy to pick it up and I am told by the pharmacist that its unlicensed and I should have a think about taking it because there is evidence that used at this high dose it can cause UV damage to your eyes. I am supposed to take 8 capsules of the stuff a day. Its not your bog standard have a vitamin pill, clearly!
I feel duped and angry. I knew the risk of what I was asking when I asked for sumatripan, the risks were well known, measured, very much understood. The risk of this experimental unlicensed treatment he's given are not quantified, not known how frequently they occur, there has been no mass trials of this!
Am I being OTT or would this piss anyone else off?
And now, even more annoyingly I don't know if I should take it or not, but I am pretty desperate. I'm not raging over this but getting an appointment with my GP is bloody hard and I always feel like I am wasting time and should just shut up. But I don't want to just shut up. I think I am pissed off because I like my GP and this has disappointed me.
Last edited by MissAnonymous : 05-12-2014 at 06:31 PM.
Firstly, Mirtazapine isn't an SSRI so you would have been ok to take it with Fluoxetine (obviously it would still carry risks to some degree).
I'm not sure of the details of your situation but quite often when things are 'off licence' it means that there isn't enough rigorous research behind it to put the drug in the BNF for that purpose, but that does not necessarily mean it's unsafe. One example is Promethazine; it's an anti-histamine for licence purposes, but off licence is used for anxiety and agitation as it has sedative properties. It may also be relevant to remember that all drugs have side effects, some pretty severe. It's a risk we take when taking anything from paracetamol to antipsychotics. It just depends how likely these incidences of severe side effects are. Do you know how common the UV damage is? Perhaps do some research before you commit to taking them.
I would trust that your GP has the knowledge to make these decisions and hopefully can explain them well to you. Otherwise if not, you're well within your right to ask them to explain their decisions etc
Last edited by ParanormalChickenGeek : 05-12-2014 at 07:47 PM.
Reason: Additional info!
We're all architects of our own private hell
No-one can hurt us like we hurt ourselves...
http://www.migrainetrust.org/assets/x/50129 this may be worth a read.
After having a very quick scan of the net there really isn't much out there about this UV damage. I think by the looks of it it MAY increase your skins sensitivity to sunlight but nothing drastic from what I've read. The most common side effects from Riboflavin are diarrhoea and yellow wee! Nothing much to worry about!
We're all architects of our own private hell
No-one can hurt us like we hurt ourselves...
I would second everything that ParanormalChickenGeek has said.
Also, have you spoken to a pharmacist about this? One who knows you and all of the medications you take? Sumatriptan is available over the counter. I'd suggest speaking to the pharmacist you normally go to and ask their opinion on concomitant use of an SSRI and sumatriptan. While GPs obviously know a lot about drugs, pharmacists are the experts and they may be able to offer additional advice to you and your GP.
Be kind - everyone you meet is fighting a hard battle
Thankyou for the link to the migraine trust, I have poured over their website before and seen that article but I didnt know the side effect of diarrhea so that's good to know! :)
Mirtazapine is very similar to SSRI's, but it still has the warning not to be taken with Sumatripan, and it can still cause serotonin syndrome especially when taken with other serotonergic drugs, I read that on the leaflet.
My problem as stated in the origional post is that I spoke to the pharmacist, who I also trust and know reasonably well, and her advice was to consider not taking it. At least do a lot of research first anyway. She wouldn't have told me this was a potential problem if there was nothing to worry about.
She told me to do some research into UV damage in the presence of excess riboflavin/B2 because there is evidence of damage to the eyes, not the skin she said. And I value my vision.
I think I will have to contact my GP and tell him what the pharmacist said, I don't really know what to do.
Its a good idea on getting my pharmacist to talk to my GP, I have spoken to my pharmacist at length and she knows his wife or something so they are familiar and I am sure she would give him a call for me, if there was a positive argument in her opinion for trying Sumatripan with fluoxetine.
Last edited by MissAnonymous : 06-12-2014 at 11:50 AM.
As I said, I couldn't find any reputable evidence online regarding damage to the eyes, only skin, so this could possibly be a very low incidence thing. I'd look further into it if I were you. There are severe risks to most medications but these incidences are low, but you still need to be warned about them because there is still a possibility, albeit very small, that it could happen to you.
As you said, the best option is to cofront your GP with what the pharmacist told you and see what his response is. Or better still get them to talk to each other!
We're all architects of our own private hell
No-one can hurt us like we hurt ourselves...
Just because it's unlicences does not mean they don't know the risk, it will have had all the trials for what it's licenced for so they should be able to find out the risks to you. what they mean by unlicenced is that it isn't usually used for that condition but is used for others. Often the doctor will look at all the available options and pick what they feel is best and they have to find sound reasoning behind using an unlicenced drug. Really I think you need to ask not for a specific drug but why they don't want to prescribe you that and would prefer this. Everyone's situation and heLth is different and different combinations work better for some rather than others and just because you've had to SSRIs together does not mean that you'll be ok and not get serotonin syndrome and the risks of that are quite high, most likely much higher than the new option he's looked into which it is likely that the affects on the eye are at a very low level and they just have to inform you because of how severe they are whereas serotonin syndrome is well known, quite common and also serious.
Maybe I shouldn't be so hellbent on asking for one drug, or so complacent about serotonin syndrome, but I have tried nearly all of the other options viable for me and my situation. As far as I am aware at 400mg, riboflavin is not licensed for ANY condition. In fact the RDA is 1.1mg for women. I am being asked to take a crazy amount more.
It hasn't had all the trials sumatripan, pizotifen, tolfenamic acid, paracetamol, codiene, propranolol, naproxen, mefanamic acid, topiramate etc have had. It has had some small trials; it is a vitamin, not a new drug a company has discovered and refined and can patent and make a **** ton of money from. There is not the financial incentive to spend huge amounts of money on large clinical trails for a vitamin supplement. Some of these drugs listed above have been used at the doses they are prescribed at for 50 years or more, and the effects in the long term are known.
The small trials of migraine prevention using riboflavin that have shown positive results so far have been very promising, but these trials have not been able to follow the participant's health 30 years down the line for obvious reasons! To add however they have reduced attacks in terms of numbers, but not reduced the pain of severity of attacks that the person has.
I feel like people here are telling me to shut up too. Nobody can say the effects on the eyes are 'at a very low level' because nobody knows that is the point!
I want to take this Riboflavin but if you have a pharmacist you trust telling you you perhaps shouldn't because of things like this; http://www.smart-publications.com/ar...n-can-be-toxic Check the reference list links, then its hard to decide what to do.
I will talk to my GP, I will get him to call me on Monday and try and have a chat to him about this.
Anxiety/tension, stress, hormones, lack of food or drink [even if I am slightly off with drink and food], sleeping too much, light levels, in the summer I get them a lot just because of the sun. Storms and change in pressure give me migraines too.
Strong smells and noise, can make them worse as can being in a stuffy/hot environment.
I am trying to tackle the causes as best I can because of course that would be ideal.
I've just done a quick literature search on riboflavin and migraine and 400 mg seems to be a common dose. There was one paper from earlier this year where they were looking at using it to treat children with migraines so I would have thought that they are confident of its safety.
That said I think it is important when starting to take a new medication to have the rationale behind the decision to prescribe the medication. Hopefully you get to speak to him soon.
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