Migraine - new stage in research

[TPMB12]

Just thought I'd post about this following a series of threads about migraine this past year.

Apparently there's a new drug developed purposefully for migraine treatment that has proven a degree of success. 43% of those receiving the drug in the trial reduced the frequency by I think half and the duration of attacks halved.

It's a sign of change in migraine research in that it's first treatment that's purposefully developed for migraine rather than been repurposed for migraine from other conditions for over 40 years I think the report I read said.

If you're on beta blockers or anti depressants for migraine this could be for you. Personally I'm between trying those heavy prevention drugs and taking drugs to reduce attacks once started. I'm between the frequencies these two approaches very recommended. This means a consultant often gives me the choice. I'll possibly wait until a few years after it's made the nhs before I'll try it.

It's good to see migraine getting specific research being carried out for it. If you think how much migraine costs the British economy each year (£2 bn) and there are more migraine sufferers than diabetes, epilepsy and asthma combined!

Despite all this the thing that bothers me the most about migraine is ppl pronouncing it a mee-graine. In my mind it's always going to be my-grain. Anything else just grates with me more than 8 hours of flashing, zigzag going and spiralling lights; single sided headaches; numbness and near paralysis down one side; nausea and violent vomiting; etc. I can cope with all that because for me there's an end but petty me knows there will always be ppl saying mee-graine! There will be no end to that.

Sorry for the negative ending to my post. At least the beginning was positive about the drug. I hope you're all keeping well and managing your my-graines.

[mrcharly-YHT]

I read about this; I'm one of the people on the 'take this and your migraine issues will go but you'll have other major side-effects' drugs.

The antibody drug therapies are popping up all over. Main issues seem to be cost and the need to be very targeted (which increases cost). At this stage they are very very much in the early trial phase so I expect them to be ready for public use around about my retirement age.

[barakta]

My migraine clinic specialist nurse told us about these and how she hopes to be able to start using them in the next 18 months for patients who do not get good results from existing treatments.

I am of the view we should be fixing the triggers like bad lighting which isn't just affecting me. Drugging people up is all well and good, but it's not a good solution and it's way more expensive than access by design.

Currently trying effectively a targeted TENS system for my migraine. Deeply sceptical but unless I'm willing to take shitty meds that's my only choice. Shitty meds 1 was a disaster I'm loathe to repeat - it gave me perma migraines, heightened my sensitivity to lighting and broke my brain. I'm not convinced even 4 weeks after stopping them that I'm fully recovered.

Triptans do seem to work, but I can't take them often enough to be useful given the prevalence of utterly shitty lighting everywhere.

[mrcharly-YHT]

Removing or avoiding triggers is of course a good idea, but for some of us, just doing things like, um, being alive meant living with migraines. So drugs are really the only option.

[barakta]

*nods* I couldn't have stayed on shittymeds they made me SO unwell and worsened the migraine and visual issues considerably. Whether other drugs would be an improvement I don't know.

I do feel pretty housebound by lighting issues. I now can't go virtually anywhere now without problem lighting including many people's houses. It's almost impossible to recommend what lightbulbs are safe when so many flicker. It's trial and error for us, I can say IF it hurts but I can't predict which will hurt and some dimmer lighting takes an hour or two for me to realise it's giving me eye pain and headaches.

If this TENS thing doesn't work I don't know what I'll do. Try more meds maybe, but if meds break my brain (which most seem to) I have to ditch them cos I can't function (aka work, communicate, socialise) with a broken brain. Having to collate my meds for my PIP form means I've got a 3 page list of meds I've tried and which doesn't work or breaks my brain...

If it's a choice between broken brain and housebound I'll choose the latter, but I'll be fucking pissed off about it. Especially as I didn't used to be like this, this was caused by exwork's shitty office.

[TPMB12]

You can't stop all your triggers. I've been living with migraines for 30 years or so (since 13 you). I've not found enough of my triggers to stop anything. Food diaries, reviewing what I've been doing prior to attacks and indeed anything I can think of and my gp, consultant and family can think of doing has not stopped them.

Light is my big trigger but how can you stop that? I can stop myself looking at lights, get lights changed at work and wear sunglasses early spring and autumn when the light is low. I still get migraines started with light triggers (plus a few other triggers because it's never just one trigger doing it on its own you need several to get an attack apparently). Reflections from cars for example. One quick flash in a passing car's mirror or highly polished bodywork and I'm gone with a migraine.

Diet for me is a problem too. Can't stop that. I eat a lot, plus little and often top. However feeling tired on a ride into work on a windy day the extra effort causes a low blood sugar type effect which can cause migraines with me. I've eaten well and shouldn't have this effect but it came on in an unpredicted way. Can't eliminate that.

So for me I have two choices, chemical or just live with the attacks when they come. Prevention is impossible without drugs and even then it's not completely successful. This drug could be better.

BTW your employer should make allowances for your medical requirements. The example! My former employer got a letter from my consultant that he had to react to. That meant all bare fluorescent tubes taken out and replaced.

The trouble is the guy listened to the electrician not me. The electrician knew nothing about migraine but he'd heard that epileptics didn't like flashing lights. So we got a number of small spotlights instead! Worst possible solution. I had given him downloaded advice from HSE over lighting to advise him. Including one that actually explained what lighting is best for migraine sufferers, their requirements if you like.

So I just turned my desk around in the open plan office to make my own solution. It worked but I had to fall out with a few bosses to keep it that way. Including the owner's beat friend (a manager who thought I worked for him, I didn't rather just ignored him).

Whether you like drugs or not doesn't make much difference to the positive aspect of this story. That is about the way research has focused on migraine itself and developed something uniquely and specifically for migraines. I think they tended to piggy back on other research. This seems to me to be about migraine research going out on its own with a well funded research package.

That is positive even if you're resisting the outcome because it's a drug.

[TPMB12]

Baraka - I really feel for you. Mine is not as bad these days but I've had really bad attacks and bad times in the past. Fortunately my attacks have become less severe or I've become better able to cope with them as I've got older. I suspect it's more of the latter tbh.

If I was in your position I don't know how I'd cope. I would however investigate every new development. It's all I could do. This one could of course be different I don't know. It's developed for migraine only so perhaps it's more focused. If that's true then potentially it could be less bad for you and even better for you than any other option. Maybe time will tell on that.

[barakta]

I don't mind drugs, but I think we should be examining what kind of lighting we have in public places and workplaces because that is almost certainly causing and exacerbating migraine. NewDrugs might work, but if it takes even 5 years to get them I'll probably have a 5 year gap in my CV cos getting work after my vision and brain have been mashed is proving difficult. Everywhere has hideous lighting

Before evil-office I was a bit more sensitive to flicker than most folk and had to stay out of places lit by dying magnetic fluorescent lighting and avoid 60Hz CRTs but otherwise had no notable issues.

Evil office lighting was unfixable because exwork decided to add an extra floor so the ceilings are low and the lighting fixtures are constantly in eyeline range. It's a mix of very bright modern flurries and horrid spotlights. They did relevel it in weeks 2, 12 and 62 but I think the week I tried to work in 2000 Lux broke my brain and vision.  The irony is I disclosed I needed control of lighting and not-too-bright before I moved in and I had insisted lighting was covered in 2011 4 years before we moved in as general access advice. I had medical evidence, OH reports, HSG38 and other advice and nothing worked except legal action which only worked after months into the process when a judge became involved... 

My ex employer either consult to ignore, or they avoid consulting people who won't be yes-men cos they don't want to hear it. 2 new buildings repeat eviloffice's problems and I hear they're still not consulting properly. All of these new buildings have hideous migraine inducing lighting and a lot of it flickers too.

I'm fucking furious because the trend towards bright non user controllable flurries with horrid spotlights and visually stressful interiors is trendy and it renders places completely inaccessible to me. It isn't me who is broken here, it is the design of these spaces.

[TPMB12]

I'm not as sensitive. For me flicker isn't an issue. It's the sudden change in brightness from a flash of light or reflection. It's even down to bright, white object in dark background. It's like the high contrast that's my issue.

I did read lighting advice from HSE that detailed tube lighting should be in one of those boxes that prevents direct light. It's all reflected and at no more than a maximum angle. It's all down to preventing direct light angles that can shine and reflect on computer screens. My current employer has these. One issue I still have is the ceiling is low for my 6'5" height. I'm practicality standing with my head inches below the light. It means the design does not work how it is designed when I'm standing.

I'm certain it's why I get workplace migraines. I. Only get them at work now because I've managed a lot of my suspected triggers in my own time. No monitors for example in my own time helps if other triggers are potentially present.

Restaurants are my pet hate. They seem to be obsessed with candles! In such restaurants I sit down then blow out all nearby candles. In a lot of places that triggers the waiting staff to approach with lighters. They get dispatched quickly. I'm a no candle zone!

Other restaurants like candle style wall lights. They are another bane in my life. I can't sit facing them and I can't sit with them behind me.

So whilst I'm not as sensitive as you are I am possibly more sensitive than general public. It's not nice when you turn round and see in your eyeline a very bright, bare bulb. When I see those residual light effects it brings a quick panic response. Until they go I'm preparing to cope with a migraine attack. My mind is panicking and planning how to get home to my bed as quickly as possible. Then when the light effect has gone I take some time to calm down.

So I agree lighting in public and working space is often an afterthought or just plain designed without a lot of people's needs considered.