Alternative to National Migraine Centre

[ClaraJ]

I have been suffering from daily migraine since a concussion a year ago and am receiving very slow care from neurologists in the NHS. Pre- accident, I had much less frequent migraines, but was grateful for some excellent appointments at the National Migraine Centre. Unfortunately now they are so busy that they can’t give me an appointment unless they get a cancellation. I accept that I may need to pay to see someone privately but wondered whether anyone has a recommendation of someone else I could see? What I am after is a long appointment with a migraine specialist who will talk through triggers and treatments with me. Thanks in advance.

[Onthemove1971]

Do you know about the "Heads Up" podcast? They are free and have a long list of different episodes that could really help. It is predicted by 2 UK doctors, I wonder you could email them and ask what the best way to find help is. Good luck, so sorry for your pain daily.

[ClaraJ in reply to Onthemove1971]

Oh yes, thanks v much- I have listened to all their podcasts. I have emailed NMC and followed up with a phone call- they have been too busy to reply to the email but will eventually do so.

[Onthemove1971 in reply to ClaraJ]

If you leave a nice comment, and ask on the Podcast, I wonder if they could help up that way.

[Jeffner]

So sorry you have been having daily migraines, and can’t get an appointment at the NMC. I go to see them too and it’s so much longer before they can offer you an appointment than last year. I am afraid I don’t know an alternative, but you could ask for a referral to an nhs headache clinic.

My migraines went from episodic to chronic after 3 minor concussions, and have tried many preventative treatments with various results, best for me was Botox at the NMC.

As I was unable to access Botox (due to covid) I have been trying other alternative treatments. Acupuncture, Avulux (glasses) & Curable app and they have been quite helpful. If you have light sensitivity, I think the glasses have helped me a lot. They are all really expensive though and have found having chronic migraine is a bit of a money pit.

Also I agree that the heads up podcast is great and should give you lots of answers you are looking for. The NMC website has a section on alternative therapies too, vitamins etc, so give that a try too and hopefully you can speak to someone soon. More importantly hopefully you start having less migraines.

[Jeffner in reply to Jeffner]

Ooops just seen you have listened to the podcast.

[ClaraJ in reply to Jeffner]

Thank you very much. Very helpful. Light doesn’t usually cause me any issues but reading or driving is very problematic so I wonder whether glasses might still help. Where did you get yours from? I have considered seeing a behavioural optometrist but it is very expensive.

I am under the headache specialist at St Mary’s, Paddington but my next appointment has been put off from May to August and my experience is that they don’t have time to talk about triggers or anything except preventative medication/ injections.

[Monroecuts]

Nuffield Health has a database of consultants who offer private consultations. They all have a biographies so you can identify migraine specialists. The first appointment with my consultant was £265 and worth every penny.

[ClaraJ in reply to Monroecuts]

Thanks very much. This is really useful info.

[ClaraJ in reply to Monroecuts]

PS did you find you had a decent length of time to talk through migraine triggers/ causes, treatment and preventative treatments?

[Monroecuts in reply to ClaraJ]

Yes Clara, he was very good. I had already done a lot of reading on Migraine Trust website and listening to Heads Up but he still taught me a lot of things. I have seen lots of GP’s and they just don’t know enough, I have had so many different suggestions and some have been downright wrong, I was losing faith. Dr Bajaj has given me great hope and I have a route to getting my life back on track. I wish I had known about this route years ago. Good luck.

[Chleo11]

Hello ClaraJ. I'm sorry to read that you're having daily migraines. Was it confirmed by a neurologist that it is 'only' migraines you are suffering from now? What I mean is that, if you've had a concussion, was everything checked in terms of possible long term issues? The other thing is that a 'hit on the head' leading to concussion, involves the neck as well. Did you get your neck checked to make sure it is not involved in those new daily migraines?

I can't unfortunately recommend any specialist. I've heard that Dr Lambru and Dr Mark Weatherall are really good. I know that Dr Weatherall trained with Dr Goadsby who is considered as being one of the best headache specialists in the world and a great researcher.

I wish you all the best.

[VickiS84]

Hi, sadly the reality is nhs consultants don't have long. I usually get about 30 minutes with mine. If you pay to see someone privately you will get a long first appointment. You could see a consultant privately and then ask to be referred onto their NHS list, so then your care (and treatment plan) continues under the same consultant rather than going through it all with someone privately only to then have to do it again with new NHS consultant. You can ask your GP to refer you to any nhs consultant. I go to NHNN at Queens Square. They have a number of treatments they can offer at their headache clinic but they seem to be fairly mainstream and haven't put a lot of focus on triggers etc. A lot of people rate Dr Matharu who has private and also NHS clinics at NHNN. I know people who have seen him privately first and then go onto his NHS list (where they get less time with him). I hear he has a long NHS wait list though.

I have also heard others say Dr Weatherall is good. I don't know where he practices though.

Any treatment trial takes a long time, e.g one oral medication takes at least 3 mths to trial, so maybe there is something your GP can get you started on to get a head start, if you decide to wait for your August appointment.

Good luck.