Neurologist/GP wars

Hi, having a nightmare at the moment. I have been suffering with really bad migraines, GP and neurologist say ‘yeah, probably a new symptom of MS’. Trying to get suitable pain relief is becoming a problem. Nothing works. Neurologist two weeks ago says due to the MS you need a pain killer in the form of a wafer, he wrote a letter to GP. GP then wrote a prescription that took a week before I could collect it. Collected prescription today to find that the GP hadn’t prescribed a wafer form of the pain relief and she only prescribed one tablet!! This is not the first time this has happened. I have been experiencing loads of other weird symptoms which I’m sure are stress related due to the migraine debacle. Is anyone else fighting with their rubbish healthcare professionals??


honest answer is-i dont fight with anyone because no-one knows the answer/appropriate treatment. if i was u agree with one professional-the one that agrees with you and take life from there. i appreciate you are most likely looking for answers to support your fight/dilema but i dont have one unfortunately. i can only wish that you somehow find the support that u seek. this ms malarkey is tough enough to cope with without ‘professionals’ using u as a ‘number’ in their hierarchy squabbles.

however, i do sincerley wish that u find a solution to ur issue which is very real and deserves an answer.

ellie x

You need a referral to a headache specialist neuro. If you are having a lot of migraines you need to be on a preventative med. There are NICE guidelines for migraine - I think you need to print them off and go and hit your GP over the head with them! I saw a wonderful headache specialist earlier this year (first time ever that a consultant’s follow up letter was 100% correct!). We discussed various options and I now take 400mg of vitamin B2 a day (it has worked wonders). I then had a problem with my GP because, like your neuro, Maxalt wafers were recommended for remaining migraine. These cost a small fortune :frowning: I was then prescribed sumatriptan, but a max of 6 tablets. Useless - I was needing half a packet each migraine! We have finally agreed on the higher dose sumatriptan and they work really well. Still a max of 6 pills, but this has been ok since being on the higher dose. Back to the wafer thing. The reason they are good is because they bypass the digestive system. When we get a migraine, our digestive system shuts down (causing the nausea / vomiting). This means that pills don’t get digested and so have damn all effect. So we either have to bypass the stomach or get it working. This is where domperidone (or equivalent) comes in: take one of them at the same time as the migraine med. It stops the nausea and makes sure the migraine med digests. So, at the very least, your GP needs to be giving you two pills! But just two is an absolute joke. I hope you can get hold of the NICE guidelines and successfully bash on some tables! If you want to try vit B2, the dose is 400mg a day. Start on 100mg and build it gradually (I added 100mg each week and started to notice a difference at 300mg). It reduces migraine in up to 70-80% of people or something like that. Be aware that it turns urine bright yellow! Hth. Good luck! Karen x

PS People with MS are much more likely to have migraine than people without MS, but it doesn’t mean it should be treated by our MS specialist neuros!

I had sumatriptan injections that I gave myself after trying endless amounts of pills. They worked really well for me.

Hope you get something sorted as it must be really affecting your everyday living.