Migraines: They are all in the head - article in The Guardian

guardian.co.uk/lifeandstyle...

[VictoriaS]

ha ha - we just both posted the same link! I even commented, tried not to get too embroiled, and in my second comment - as Britred gave a shout out to the National Migraine Centre!

[Hidden]

That article was flagged up on Twitter, I would have missed it otherwise! Good call for NMC!

[rosianna]

my head wont let me concentrate enough to take in what is written in the article, is it a good one or yet another article by someone who's not very sympathetic?

[rosianna]

could the NMC get a feature done about the clinic by this editor of the guardian while the topic is still hot?

[skullsandponies]

I think this is a good article for migraine sufferers but for people that don't understand migraine I'm not so sure. One commenter on that article put "I've never had a migraine but I'd like to have at least one" - they have no idea what they are wishing for!

This could be a really good PR opportunity for the NMC though!

[zigzag]

This article made me so cross. If I dont calm down Ill probably bring on a migraine!

Now even more non sufferers will think migraine is good fun, better than just a plain headache.

Just because the writing is so good ,it doesnt make the article good.

[VictoriaS]

Don't get too cross. If you read the comments it provoked a really good debate which is surely a good thing? I chose to take it as one writers perspective on the aurora phase of migraine and a vivid description of Alice in Wonderland Syndrome - in this case I feel its a beautifully written and rather surreal piece. And it is true that some experience euphoria post/pre migraine - oh that I was one of them! I also think 'any publicity is good publicity'? And very interesting that so many people made comments/got so heated and got this topic up and running & the person who made the 'I'd like a migraine' got an ear full....And several people, myself included, made several references to the NMC...

[zigzag in reply to VictoriaS]

Thanks for your reply, Im calm now! However my last observation is this: "Euphoria" Shmuforia,... its just relief that its all over now.

[VictoriaS in reply to zigzag]

Oh I know how you feel. I get migraine hangover almost just as bad as the migraine itself, like I've been run over by a bus, backwards. When are they going to invent a pill for that! I actually even did a blog post about all this today. Hope you're well

[rosianna]

wonder if those who would like to have a migraine after reading this would write about it in the same way after??!

this article does rather paint the picture of a migraineur as a tree hugging hippie high on lsd!

[Hidden]

I think in some ways it was written a little tongue in cheek, almost throwing up of the hands in the air and saying, 'ok, I hate it but it has some parts that I have embraced and tried to accept as a form of art rather than to be feared'. She's lucky to have gotten to that place.

I have tried to so hard to embrace the weird phase of migraine auras, I am convinced that by going with it, not being scared of it must help get through the process and be less traumatised.It may even sometimes lessen the severity, I'm not sure. However sometimes this works for me and the rest of the time I am as terrified now as I was 30 years ago when I had my first one.

As Victoria says, it was really a rather clever article as it sparked a lot of different responses and debate. That is good. Newspaper articles rarely tick all the boxes as they are done with the motive of selling papers, not helping to educate others on us long misunderstood migraineurs.

Wishing you all a migraine free Monday.

x

[tina1950]

This lady who wrote the article obviously does not have the side effects that are experienced by a lot of miraine sufferers, disorientation to the point you can not think or walk about because legs feel like jelly , panic due to the dreadful feelings you may feel, and as one person commented to the article ' your head i feels like it is jammed in a door'. I have only recently put my symptoms down to aggressive migaine without full aura but occasionally with vertigo that last approx 4 days at a time. To find anything pleasant in any of these experiences seems quite odd to me. Perhaps it is an age thing and as you get older the symptoms become more aggressive. As yet I have not been given a medical conclusion.

Yes it is good to see some responses , as they differ so much in content and experiences .

[Hidden in reply to tina1950]

Tina, have you ever had a diagnosis of what type of migraine you suffer from?

[tina1950 in reply to Hidden]

Not in a specific way as yet, i joined this site in desperaation to find some clues to my symptoms i have had for a long long time which are increasing.

I have noted yours which are like the symptoms i have , i have read other peoples symptoms also and many causes and explanations of symptoms of migraine in my quest to find an answer to the dreadful feelings I have suddenly and the aftermath, sometimes more often without vertigo.

I have a loop recorder fitted [chest implant recording heart rhythms] , my doctor said we need to sort that out first via the surgeon before she is inclined to give me any medication for migraine or indeed see a migraine specialist.

I have been asking for a very long time if migraine could be the problem that causes specific symptoms i have which are not at all pleasant. more so because the loop when at 'diagnostics clinic' the diagnostic people said the symptoms I record are not indicitive to a heart rhythm malfunction !!! yes i am confused , as the surgeon said I needed a pacemaker the diagnostics said she did not think the recordings i take suggest a pacemaker !!!

The symptoms ---because they come on suddenly, caused the heart surgeon to suspect a rhythm problem but ... i read that migraine and other similar symptoms also can come on suddenly and have similar symptoms.

I have had migraine with an aura some years ago, but the attacks were short lived and i was able to cope, they went away when I was given a beta blocker for another reason.

For instance twice in the last few days I have suddenly felt my legs go shaky and a sudden pain in my head the foggy feeling comes on and my eyes do not focus , i appear very pale and can only lie down and i feel crap !i am recovering from an attack at the moment , i had to lie down earlier, one second I was doing some art work quite relaxed and next second I was feeling dreadful , apart from the banging head it is the shakiness and disorientation and weakness that is peculiar. this will last now for around 24 to 48 hours then suddenly lifts like nothing has happened. i f you ahve any input i would be grateful tina x

[Hidden]

Hi Tina

I think if vertigo is a regular feature and you know you have migraines, then you should consider asking to be referred to a neuro-otologist, then follow up with seeing a headache specialist at NMC, (which is what I am doing). Obviously you have some other medical issues going on which also need to be taken into account, but I am sure they would do this for you.

A neuro-otologist specialises in balance disorders, and the symptoms you describe sound vestibular and very similar to what I experience. They would put you through a range of tests and generally test and diagnose on the same day. I go to the National Hospital for Neurology and Neurosurgery in Queen's Square London to see a neuro-otologist uclh.nhs.uk/ourservices/ser...

I didn't have my vertigo diagnosed as vestibular migraine until March 2012....my vertigo bouts started 30 years ago! I only wish I'd known about neuro-otologists many years ago to have gotten that diagnosis earlier. It doesn't fix the problem but it at least means you know what is causing it, and you can then start taking drugs which are recommended to try for MAV. Getting a diagnosis often gets rid of a lot of anxiety. Let us know how you get on if you ask for a referral!

[tina1950 in reply to Hidden]

thanks a lot, yes i will see my doctor again or even suggest this to the surgeon, I will now see him on the 17th July ,the 6th i go to the diagnostic clinic again to have the implant checked, I recorded todays events on the recorder that is placed on top on the implant so we will see if at all there is anything reported on it!. but I have doubts as said last time a check was made post events--no rhythm problem recorded even though the symptoms were the same as the ones that convinced the surgeon to do the implant , [he said as a pre test to get the right pacemaker fitted ! !!]

If you have a definate diagnosis this half the battle, though my my you only got the diagnosis in 2012! after all those years of misery !

I have family in London but due to present symptoms increasing I don't think i could travel to London right now, i live in the North. However I am sure I can find a neuro - otologist near or in my area and i shall certainly request to see one. I am so desperate to find a proper answer and I am more agrophobic than ever and after two horrid events the last few days.

Thank you so much for taking the time to write , extremely helpful advice!I wish you better health and peace T x

[Hidden]

Hi Tina,

Try and go to a big teaching hospital with a neuro-otologist if you look for somewhere nearer to home if you can, they are the best. There are also a handful of NHS balance clinics around the country, they are based in hospitals and are usually multidisciplinary, which is much better for diagnosis and care management plans.

They are at: Bristol, Gillingham, Reading, Liverpool sthk.nhs.uk/pages/Departmen... , Norwich nnuh.nhs.uk/dept.asp?id=370 there may be more if you search online.

It's probably good if you find out the nearest centre to you, print off the details, maybe find out what the referral procedure is and take that with you to your next appointment when you request the referral. Go armed with the info! lol

There aren't many neuro-otologists around, and when I asked to see one initially it was refused, in fact any referral was refused.So I changed GPs, who again would not refer me directly to the neuro-otologist but did agree to refer me to the local hospitals ENT. They diagnosed me with basilar type migraine (which I had already been told I had years ago) and just said the vertigo was migraine related. They simply don't have the experience or test equipment to diagnose. It was through this consultant that I pushed for a referral to NHNN, I had been told it was the best place to go by other sufferers (it's a 800 mile round trip to get to London for me,difficult, but worth it to get to see the best medics).

If you go to one of these specialist clinics/units they will most likely help you with your anxiety and phobia too, that is a common experience in MAVers. I get very depressed and panicky when I have attacks. I think it's normal, as they are just so unpleasant, as you know.

Try and remember that it is not going out that brings on your vertigo, it is neurological if it is linked to your migraine. Have you tried using a walking stick when you go out on the days when you feel like you are wobbly or being pulled to one side, but can otherwise move around fairly well? It's surprising how much confidence they can give you as it helps ground you on those days. VEDA suggest it too.

Good luck at your next appointment! Take care, try and go out if you can, it's difficult but will help you build your confidence about being out.

x

[tina1950 in reply to Hidden]

saffron bread-- hi i hope you do not mind me writing to you for advice. i did not see this reply till now as I have not been able to look at my computer, which is a shame as I have had some dreadful episodes over the last two weeks and I went to my doctor this morn, I asked if I could see a specialist but not in as much detail as you suggest, i will see another doctor when i can get an appointment .

The doctor this morning was in no way forthcoming with any possitives only said --- 'you 'may 'have migraine!! and I can't exactly diagnose that but I 'don't' think you have side effects to other meds you take but I can't give you an answer!! ' 'so I can not send you to a specialist dealing in migraine' till you take sumatriptin [she prescribed] as a trial to see if it works !' I told her how ill i felt post another attack of symptoms last night which are now happening everyother day, as she said she ' thinks ' it could be migraine [ maybe ! ]however she told me her husband had migraine and was violently sick when he took a sumatriptin!! no encouragement there then I said! and i was dismissed! and came out of the surgery none the wiser and scared to take the sumatriptin!! as to feel worse than I do now is unthinkable at the moment.

It is the vertigo that confines me to the house indeed , sadly my head is so dizzy all the symptoms you mentioned and my legs so shaky i can't get out of the house when i feel so bad just lay quiet. i will try the stick and try to get out, i just feel so ill.

I seem to have gaps of feeling totally well for around 12 hours then feel dreadful suddenly again lately.

thanks for all the info above and as happens liverpool would be easier than anywhere to get to , I think i must see another doctor at my surgery now, when you are talking to one that just shrugs her shoulders there is not a lot I could do! hope you are keeping well and many thanks again t x