At my request I've been referred to the local migraine clinic via my GP. Heard back from them today and my appointment is in March! Has anyone else experienced long delays and are the clinics worthwhile?
The other option is to go private, just wondering if anyone has experience of private migraine centres, or private neurologists who can prescribe? I'm not taking any anti migraine meds currently but have tried at least 7 in the past.
Hello, yes! I had to wait a year from referral to actual appointment at a NHS migraine clinic. During the wait, I made an appointment at The National Migraine Centre (in the UK). I paid for an appointment so it was quick, but you can wait for a free appointment. The doctors can prescribe meds but they will be on a private prescription so expensive. Have a look at their website, lots of info on it. Good luck!
I had a look and that was my concern tbh. I can afford to pay for a consultation, but its the ongoing cost of the medication that concerns me. No idea how they are but not cheap I suspect.
Good morning. Are you in the UK, or elsewhere? I have done both NHS and privately. Like you, I had to wait some while to access my local headache team at Sheffield hospital, but whilst there was offered a single CGRP drug Emgality. Appointments were by telephone every 3 months. This worked brilliantly but only lasted 9 weeks. Obviously I developed antibodies to the treatment. I then thought I could simply switch to another drug, but this proved impossible as you are only allowed to try 1 kind on the NHS. If it ultimately fails, even if it worked initially, you cannot try others. Barmy I know. This led me to go privately in order to try other types on offer. Initially, I went to Dr Lily, a private neurologist in Leeds Spire Hospital which I attended face to face. I tried Botox, and the other 2 injection drugs, but nothing worked as well as Emgality. Because I wanted to try Vyepti, the infusion drug, I then had to switch to the National Migraine Centre, because Dr Lily could not get hold of this drug.
I am currently trialling this with some success, but have to travel a considerable distance to access it - Rochester in Kent.
In the meantime, I have been successful in getting my local gp to finance Remegepant to work alongside Vyepti, as I found it worked better together. ( after buying this directly from Lloyd's pharmacy for some months).
So, what do I recommend? Well, you get what you want quicker if you go privately, but treatment is expensive. Fortunately my husband has a good pension and is incredibly supportive so I am fortunate to be able to pick and choose.
If you can get success with the NHS, it's obviously cheaper, but there are strict guidelines they have to follow when offering treatment. You also have to complete detailed diaries of your treatment and progress which you have to submit each month.
And you cannot double up treatment under the NHS, even though the growing wisdom is that combined treatments often give better results.
I wish you luck in your choice and can speak again if you think I can be of any help.
Kind regards.
Yes I'm in the UK, my appointment isnt until March, apparently they only have one specialist nurse for headaches, not the two they advertise. Frustratingly my Neurologist who I last saw 2 years ago has switched over to full time Neurophysiology so isnt seeing migraine patients anymore.
I can easily afford the consultation fee,its the ongoing cost of medication that concerns me. I'm already paying for Low Dose Naltrexone for my Fibromyalgia, so more private meds could be an issue. Do you mind me asking how much the CGRP meds are please?
Well, they have gone down a bit in price since they were first available, especially the gepants, but Vyepti, the 3 month infusion costs about £700 each time. Aimovig from Pharmaxo costs about £800 every 3 months ( it's cheaper than getting it each month). The gepants are about £270 per month.
So, like I said, it's a few thousand every year. I've spent a small fortune over the last few years. And you also have to factor in the consultancy fees. At National Migraine Centre, the first private appointment is dearer but subsequent ones cheaper and you can do phone consultancy which cuts down on travelling.
I wish you luck. It's so debilitating and wearing. It affects me in so many ways. I suffer from sickness and had lost weight steadily over the years until my weight reached 7 and a half stone, from over 11. I knew I had to do something or I would have simply wasted away.
Kind regards.
Hi nice to meet you
Oh no long waiting list
My amitriptyline helps my vestibular migraine
Hope you get help sooner
Unfortunately it did nothing for me apart from give me the shakes and palpitations 😒. I know it helps a lot of people.
Sorry hear that
Hi
My first appointment was a long time in advance but I kept trying for a cancellation and did see someone a lot sooner. It took a long time trying other meds before I was prescribed a CRGP but a friend of mine paid privately through the national migraine centre. She paid £5000 for a year of Ajovy but then the person she was seeing there persuaded the NHS that they should fund future injections. Obviously I don't know if that would be the case for everyone.
I asked about a cancellation list. They don't operate one. Plus they confirmed the one headache nurse they do have only works part time.
So the mystery of the long wait has been resolved. No wonder people go private.
Hello. You can ask your GP to write a letter which you will use to see à private consultant. However, the consultant will write à report back to your GP advising which medic to prescribe. The medic will be therefore at the price of NHS prescriptions. Except for Gepants, which you can't have at this stage.
It's the Gepants I'm interested in as nothing else has worked. Hence my concern at ongoing costs. I feel like I'm in last chance saloon.
In Kent, Gepants cannot be prescribed under the NHS. I'm taking them via the NHS and I have to pay for it. No single medic works for everyone, for your own sake, don't expect a miracle. Everyone is different. You can still see à private consultant in order to get a review of your condition and they may come up with different suggestions.
We can have them but with caveats, you have to have tried 3 different meds from 3 different groups ie, beta blockers, anti depressants etc. Which I have.
No I've long gone past hoping for miracles. I'd just like not to feel like I'm swaying all the time. I feel like its taken over my life over the past two years. Its thoroughly miserable and I'd just like some relief.
If you can pay you can get them via online pharmacies. You only need to have an online consultation with à doctor. I don't really understand how this all works but you can check. Yes I know, so difficult. And then you get some people, family or work, commenting that you are not a really joyous person. Really? Aren't I? I let you take my pain and I take your boundless energy. All the best.
Thank you and to you. I have several other health issues, hypotbyroid, pernicious anemia and Ehlers Danlos, I've been battling with chronic illness since my 30's but the last two and a half years have been absolute hell. The problem I find is trying to describe to people how it feels.
My husband, bless him, is a chronic migraineur as well but his are the more usual kind, he doesnt get the balance and dizziness issues, but he's been a brick. He knows what its like. Thank you for all your help.
Hi we got fed up of waiting and paid private at the national migraine centre. Was seen within a week.
Yes I'm in the process of finding a private neuro otologist who specialises in balance disorders and VM. The NHS expects me to wait 6 months, which when you are dizzy and unbalanced all the time is a lifetime. Did you find your consultation helpful?
We really did. The national migraine centre appointments are with a specialist. I think it would either £399 or £299 for that first appointment. Diagnosed with chronic migraine, MCAS and POTS. I got a letter within a week which I took to the GP who gave me prescriptions based on the letter. Very quick and v easy. When we finally got NHS appt the neurologist was absolutely useless so was doubly glad we went down the private route.
Well my " appointment" such as it is is only a phone call, about as much use as a chocolate tea pot, I want to sit down with an expert, tell them everything that's been happening, have some tests done to really get to the bottom of whether its migraine related or something else. Not a 10 minute conversation on the phone or a rushed appointment with an overworked Neurologist. Really pleased it was worthwhile for you.
Hello, my understanding is that gepants are available on the NHS in some trusts. The hospital neurologist I’m under said it’s worth checking with my GP surgery. Unfortunately, not available in either trust for me, but it’s worth trying. Then if National Migraine Centre doctor recommends gepants for you, your GP should prescribe. My surgery told me to check again in a few months as more medications become available quite regularly on NHS. Fingers crossed we are all able to access these important medications soon
In my case the nearest clinic was not in my health board and it took 3 hospital admissions and an angry consultant to put his foot down and refer me again after initially being refused. As I understand it, only migraine clinics can prescribe the relevant drugs, in my case Ajovy. The alternative as you have pointed out is to pay an arm and a leg to get it prescribed through a private clinic such as the migraine clinic. HOWEVER: I'm pretty certain that when I was considering that route, ut would eventually have been possible to have the prescription put through ny GP (or possibly the migraine clinic NHS) so it wouldn't have been forever. Still, it was hundreds of pounds, I wasn't working at the time, because of migraines, and so it wasn't worth it.
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