Headaches and Migraines

Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....

Re: Headaches and Migraines

Postby Finarda » Sun Jan 10, 2010 9:55 pm

Interesting! Thanks for posting!

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Re: Headaches and Migraines

Postby nemonie » Thu Jan 14, 2010 5:32 pm

Hi, I've just had my daily migraine medication changed (again!!!) to s*d volproate which is an anti-epileptic/anti-convulsant. Has anyone else been prescribed this for migraines?

I've previously been on pizotifen and then atenolol (a beta blocker) but neither of them had any effect. I've also finally been referred to a headache clinic. Does anyone have experience of these?

I've done a search for both these topics but couldn't find what I wanted.

Any help would be greatly appreciated
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Re: Headaches and Migraines

Postby Finarda » Fri Jan 15, 2010 2:59 am

Nemonie, I haven't been on Na Valproate but I have been on four other anti-convulsants for migraines (Neurontin, Keppra, Topomax and Lyrica (although the latter is for nerve pain not for migraines).

Of all of them I found Keppra the one that had any positive impact but it didn't reduce their frequency or severity much and the side effects were annoying so I didn't keep taking it. I've also been on at least one or two of all the other types of migraine drugs such as beta blockers and calcium channel blockers. The one that would have been useful if it had work was Singulair (although at an increased dosage compared with what you'd take for allergies or asthma - which it didn't help for me).

I haven't been to a headache clinic but would love to go. I've only ever had the one neurologist and think that there may be some advantage to seeing a different one who specialises in headaches and who has a team to back him up.

Cameronjcw, hope you're feeling better today. I know the feeling about just wanting to pass out. I got my doctor to give me a prescription for a few sleeping tablets to take when I just want to sleep through the pain but can't.

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Re: Headaches and Migraines

Postby anna » Sat Jan 16, 2010 9:29 pm

Just a weird thought on headache clinics. The one I've been to is the City of London Migraine Clinic. Now, I realise you're in Canada but it might be worth googling them to see if there are any links for similar setups in Canada. As far as I know your healthcare is all private, but that particular clinic is so well thought of that they might have links to a Canadian organisation? I wish you luck.
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Re: Headaches and Migraines

Postby leashy11 » Sun Jan 17, 2010 8:39 pm

I've just had a 2 day migraine :( it's now on it's way out with just the painful eye sockets and lingering forehead pain I get afterwards. I don't know why migraines would be associated to HMS though :S I get so tired with them I can sleep all day, in fact I did sleep most of today! :lol:
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Re: Headaches and Migraines

Postby Finarda » Mon Jan 18, 2010 6:09 pm

If you're not getting satisfaction from your regular doctor then you can ask for a referral to a neurologist or a Headache specialist at a migraine/headache clinic. They generally know more options for drugs, more recent stuff.

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Re: Headaches and Migraines

Postby nemonie » Sun Jan 24, 2010 7:01 pm

Just got my letter saying from the headache clinic saying that they have received my referral letter from my GP :dance:

Then it says that they have a 16 week waiting list :duh:

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Re: Headaches and Migraines

Postby JoSo » Sun Feb 07, 2010 1:31 pm

Hi going back to what people were saying about light sensitivity...for me it was the cause of my headaches not just making them worse...blue grey in particular lead to migranes and headaches so much so that i now were orange tinted lenses in my glasses all the time and the difference is incredible...for me its all caused by a condition caled Scotopic sensitivity syndrome / Irlen syndrome and is really common but people dont often real;ise they have it untill they see the difference through tinted lenses and realise what the world is supposed to look like...although its technically a learning disability many people find they only suffer with the headached if they're already ill or they're working under flourescent lights or driving at night etc...
hope thats some help
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Re: Headaches and Migraines

Postby Spireite » Mon Feb 08, 2010 11:18 pm

Thanks for this Jo.

I've had a look at this as I do suffer from severe distortions wearing glasses to the point where I just can't get on with them at all despite practicing for 13 years. I can't leave the house in glasses and certainly can't drive although my optician thinks I can. I don't think I have any problems with contact lenses, so as usual, opticians think I'm making it up. Then this Irlen syndrome/Scotopic sensitivity syndrome talks about distortions in the environment and depth perception as I struggle enormously with glasses. My question is can you get this sort of testing and tinted lenses on the nhs? Why do I have such a difference between contact lenses and glasses.
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Re: Headaches and Migraines

Postby Stone » Tue Feb 09, 2010 8:25 am

Spireite wrote:Why do I have such a difference between contact lenses and glasses.

Probably because glasses are further away from your face ;)

I've worn glasses since I was 5 and swapped to contacts when I was about 15 and vain, there is a big difference. Your glasses may not quite fit you (they never seem designed around humans!) and be moving slightly relative to your eyes as you move your head around. The more short- or long-sighted you are the smaller the sweet spot along the optical axis and the more precisely aligned they need to be. I thought I needed new glasses last year and while wandering around different opticians one of them said 'here, give me those for a minute', fiddled with the nosepieces and suddenly I could see again :lol:

Be aware the Irlen people aren't well-recognised medically and with all these things you can't really tell if it's new science or pseudoscience...

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Re: Headaches and Migraines

Postby JoSo » Tue Feb 09, 2010 2:31 pm

Spireite wrote:Thanks for this Jo.

Then this Irlen syndrome/Scotopic sensitivity syndrome talks about distortions in the environment and depth perception as I struggle enormously with glasses.


soyunds like Irlen to me...i know of a friend who got Tinted glasses on the NHS but it was never offered to me...irlen testing is about £20 at my opticians in Felixtowe and organisations like the dyslexia foundation can often help with funding..or maybe DLA or something similar if its applicable? you might find that after the test you can get sunglasses that match your particular tint and they would be cheaper but i have bright orange so no luck there! :)
feel free to PM me if you would like any more info :)
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Re: Headaches and Migraines

Postby Spireite » Tue Feb 09, 2010 10:30 pm

I fully understand that contact lenses are nearer to your eyes and so common sense tells me they are infinitely better to see with. However, what I don't understand is how other people manage to see in glasses when I can't??? Why am I different even to other hypermobiles? I am only moderately short-sighted.

Apart from the obvious ie that contact lenses are dependant on my eyes being able to tolerate lumps of plastic in them, all day every day, there are other odd occasional situations when contact lenses are not allowed, eg in hospital and a trip to the operating theatre as I've had 8 times recently. If they want me to find my own way to the operating theatre then I have to wear contacts. They all tell me, on one-size-fits-all procedures, I have to take my lenses out which means calling a trolley to wheel me down the corridor and up the stairs and along a bit. I look very fit and healthy so cue sarcasm and scinicism. Fortunately I know my good consultant isn't the slightest bit interested in whether I've got lenses in or not, even if no-one else knows.

Unusually I like bright lights and never wear sunglasses.

I am concerned it might be pseudoscience. I'd be happier if the opticians did it, but even if it isn't a vision problem, I still think opticians should be aware of vision-related problems. All I get from several opticians is that's your prescription, you haven't practiced enough hundreds of hours over enough years.

I doubt I'd get any funding of any type. I'm still fighting for my Jobseekers Allowance from last May.

Why can't I see through glasses?
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Re: Headaches and Migraines

Postby Stone » Wed Feb 10, 2010 8:18 am

I don't know :) The only thing I can think of would be some kind of problem adjusting your focus so you were getting distracted by reflections off the front/back of the lenses (happens to me sometimes when I'm tired). Then again, I'm not an optician. I'm assuming you've got the right strength specs and no undiagnosed astigmatism or nystagmus or anything.

I've walked myself to theatre before, they just got me to take my glasses off once I was on the trolley and kept them handy so I could have them back in Recovery.

You can test if orange lenses make a difference to you by having a hunt on eBay for British Army laser goggles (they look like this.) They used to be issued for exercise use but when they changed the type of laser rangefinder they used they offloaded the lot to surplus dealers, who now can't get rid of them :lol: They're usually only a fiver, might give you an idea if that sort of thing would help without wasting too much energy on it. Wearing them as sunglasses I found they increased contrast a lot and made it easier to see in low light - but then all orange lenses do that! There's definitely scope for fleecing the vulnerable with this sort of thing so keep an eye out for the dodgy science.

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Re: Headaches and Migraines

Postby JoSo » Wed Feb 10, 2010 10:01 pm

It might just be a case of feeling more comfortable in dofferent light conditions
i wouldn't wase money on trying orange lenses without a test there are literally thousands of colour combinations that might bonof no use at all and of all the people i know with light sensitivities orange is the least common colour...if you have facebook there are a few groups for Irlen syndrome and you can see the pics of people with coloured glasses (some of them are really funki!
it migth be no use at all but i just thaught i'd share my experiene
all the best x
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Re: Headaches and Migraines

Postby Spireite » Wed Feb 10, 2010 10:30 pm

Thanks very much for the thoughts. I'm not on facebook.

Opticians blame my astigmatism as to why it takes an hour to adjust to specs. But I've tried for over a thousand hours. Othe people with astigmatism can see with glasses. If I had nystagmus then surely contact lenses would also be a problem? I've seen 8 opticians about specs over 13 years and that's your prescription off you go you silly woman. They have tried weakening the strength to see if that reduces the distortions but no, and then I can't see to read things either.

The point in hospital is that you are supposed to walk to theatre in your specs and I physically cannot. This leads to unpleasantness against me.

Do you get straight lines becoming curved? Can you ever manage stairs in glasses? I can't.

I know from all my multitude of hms problems I've solved that a reason will be found eventually. I'd just prefer it to be sooner rather than later.

All suggestions welcome.
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