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.....

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Re: Headaches and Migraines

Postby Finarda » Wed Jul 14, 2010 4:30 am

Spireite: They were all over my forehead, jaw, side of my head, back of my head, neck and shoulders. Basically anywhere that was likely to cause a migraine.

Elliejay: And yes, we are a mess, LOL!

Fiona
Diagnosed EDS - Hypermobility 2004. Severe Hemiplegic Migraines. Both kids show hypermobility but haven't been tested.
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Re: Headaches and Migraines

Postby vamp_vintage » Sat Jan 22, 2011 6:21 pm

I suffer from a lot of headaches and can't figure out the reason. I wear glasses/ cpntact lenses and thought it might be that i had the wrong prescription but i dont. Then i thought it was because i was staring at a computer too long, so i tried with glasses/ contacts on and off, nothing. I tried to go a couple days without the computer (unless absolutley neded) nothing. I have used pain killers of all sorts (prescribed and over the counter) nothing has helped. I have used herbal teas and lying in a dark room like i would if i had a migraine but nothing. Is it just one of things?
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Re: Headaches and Migraines

Postby Purplesheep » Sat Jan 22, 2011 7:19 pm

It could be tension headaches - basically, our muscles have to work a lot harder to keep our joints in place and therefore are often overworked, especially the muscles at the bottom of the neck/top of the shoulder. I think for these, the pain tends to be around the forehead and the temples, so they are distinct from migraines. I don't know if that sounds like your headaches at all. They can also be influenced by hormones, I get a headache exactly every four weeks at the same time in my cycle... in addition to the "normal" headaches, of course. Massage and TENS can help relax the muscles, so they are worth a try.
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Re: Headaches and Migraines

Postby nemonie » Sat Jan 22, 2011 7:50 pm

Spinal hypermobility can cause or exacerbate headaches of varying types:-
Cervicogenic (Pain up the back of the neck and the skull, generally staying behind the ears. Often mid-level intensity)
Migraines (To many different types to mention but I recommend looking up the migraine trust website for good descriptions, nearly always with nausea and light sensitivity)
Tension-type headache (what what be described as a normal headache, a band of tension-type pain around the head.)
Ice-Pick Headaches (Also called primary stabbing headahces, feel like being stabbed in the head with an ice-pick! The pain usually lasts from 2-20 seconds and it's possible to have isolated headaches or episodes with several to many. Pain is usually above the aye or above and behind the ear.)

Temporomandibular joint disorder can cause headaches as well and a lot of us suffer from this. This is basically Jaw pain and dysfunction of the joint, the headache often starts as facial pain in the jaw or lower face region and then spreads upwards similar to a tension-type headache.

Sinus Headaches. These don't have a link to HMS as far as I know, but are fairly vile. Usually linked to sinus infections. The pain is excruciating and corresponds to the sinus cavities that sit in the skull, so pain is usually above and behind and below eye-sockets.

Go to the website for the London Migraine Clinic and download the headache diary from there. After a month or so, go to your GP with the diary and ask to be referred to a headache clinic. You don't have to put up with chronic headaches.
Finally diagnosed with EDS-H and POTS after 20 years by the lovely Prof G \o/
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Re: Headaches and Migraines

Postby vamp_vintage » Sat Jan 22, 2011 8:25 pm

Thanks, those were helpful, will give it a try
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Re: Headaches and Migraines

Postby shedevil_kt » Sun Apr 03, 2011 1:10 am

ok i have had a headche over my right eye socket for the past id say 3 months it is constatntly there so i lernt to deal with it the only problem being when i get a migrane it is twice as bad as normal. i am meant to be getting new meds suggested from proff g but not got letter been a month now and doctors wont change meds till recieve letter does anyone know of any over the counter meds that may help?

katie xx
Katie Hollingsworth Diagnosed with Hypermobility Syndrome, EDS, POTS, Fibromyalgia, Chronic Fatigue Syndrome on 03/03/2011: I also have IBS,Ashtma,Depression,Anaphalaxis to fleas,wasps,and bees.
I am a right catch lol looking forward to your reply :O)
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Re: Headaches and Migraines

Postby niccysearle » Tue May 10, 2011 2:50 pm

I really can sympathise with all of you out there that feel like you have a constant headache!! :(
Due to an accident at work many years ago I crushed the top three vertebrae in my spine and as a result have quite a large lump at the top of my back-scoliosis!! I have so many headaches caused by this, and the tension that I carry in my neck and across my shoulder blades......my husband always tells me to let him know when I DON'T have a headache!! (In a jokey kinda way of course!)
The best thing I find is massage....my sister is amazing at this but unfortunately we do not live near each other, so think I'm going to start "treating" myself to a massage once evey now and again!
I tend to use tiger balm a lot-although I do have to rely on strong painkillers, where possible I prefer to steer towards more natural remedies!! :angel:
I have a memory foam pillow which does help as if I have a normal pillow it raises my head too high and then I wake up with a mother of all headaches!! :(

Sending all you fellow head-ache sufferers a big (gentle) hug. :hug:
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Re: Headaches and Migraines

Postby bree » Tue Jun 14, 2011 9:30 pm

Does anyone get really sharp pains in their head normally at back but sometimes moving to front, only lasts few seconds and can come on due to coughing or even laughing sometimes. Also started getting this really weird searing pain at the base of my head, like sometimes get my head in a hot vice grip, stops me in my tracks sometimes. Get the annoying headaches as well but this other pain only been around few months. Is it just the hypermobility of neck that can cause this. Sometimes get really dizzy with coughing etc... weird :roll:
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Re: Headaches and Migraines

Postby DiSh » Tue Jun 21, 2011 10:58 pm

I get horrific migraines which thankfully I can control now if I catch them in time otherwise I feel like the back of my head is exploding I had a really bad one last year which blinded me. Mine are vascular so no idea if that makes a difference and in general they're at the back of my head if you imagine a line drawn from ear to ear to seperate front from back. Sometimes I get aura as a warning other times I don't, sometimes I have my heart pulsating in my ears as the muscles are impinging veins which is a bit disconcerting at times. I get visual disturbance, nausea, disorientation and the migraine.

I take something called zolmatriptan but its not particulary cheap but does for me at least work. They come in 6 packs and I generally go through 2 a month.

I get weird head things (not really headaches) where it literally feels like theres cold water or ice dripping in my skull but besides that I have waking headaches which I've been told by Rheumy last week are down to all my ligaments being over stretched in my neck (that interlock into head) and when I'm asleep they shrink back to size they should be, for me this makes me incredibly rigid in a morning and thus causes headaches as a result. For these I've not really found much of a cure, I take Paracetamol, naproxen and codiene phosphate daily so wonder often how it can be but they generally lessen as the day goes on once I've managed to get myself mobile and once the pain relief kicks in (I have to wake 30 mins before I rise to take medication). Somedays though it just won't shift and it drags on to the next and the next and the next and before you know it, its gone on a week or more :(
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Re: Headaches and Migraines

Postby Sandy L » Wed Jun 22, 2011 6:54 pm

DiSh
I sent you a list of migraine preventive measures. There might be something there that would help.
Sandy L
I am a physician specializing in occupational and environmental medicine. I am not an authority on HMS or EDS, but find I have several patients with the condition and am trying to learn more.
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Re: Headaches and Migraines

Postby DiSh » Wed Jun 22, 2011 7:09 pm

Hi thanks have seen your pm am going to have a read later when peace returns and small people sleep

Thanks

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Re: Headaches and Migraines

Postby madmum » Thu Jun 23, 2011 10:35 am

Had a severe migraine yesterday,still feel washed out. Get them regularly. Neck seems to cause a lot of them as does lack of sleep.
Mum to son with hms,pain amplification,migraine,plantar fascitis,ibs.lactose intolerant,hayfever and numerous allergies. I have hms,arthritis,migraine,p.o.t.s,allergies,and others too numerous to mention. Acused of being mentally ill hence.....madmum.
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Re: Headaches and Migraines

Postby bonniek » Fri Jun 24, 2011 8:18 pm

bree wrote:Does anyone get really sharp pains in their head normally at back but sometimes moving to front, only lasts few seconds and can come on due to coughing or even laughing sometimes. Also started getting this really weird searing pain at the base of my head, like sometimes get my head in a hot vice grip, stops me in my tracks sometimes. Get the annoying headaches as well but this other pain only been around few months. Is it just the hypermobility of neck that can cause this. Sometimes get really dizzy with coughing etc... weird :roll:


Hi bree! I am wondering if this is the same thing I get. Sometimes when I laugh (or occasionally without known provocation) I get a sudden muscle spasm that runs through the top of my shoulder then into my neck and the back of my head. It feels like a sharp electrical shock that takes my breath away and immobilizes me for a short while - very painful. Afterwards it aches a bit, but then completely disappears. Very annoying since it happens without any warning.
" For in the day of trouble, He will keep me safe in His dwelling; He will hide me in the shelter of His tabernacle and set me high upon a rock."(Psalm 27:5)
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Re: Headaches and Migraines

Postby nemonie » Mon Jun 27, 2011 9:46 pm

DiSh wrote:I get horrific migraines ......I take something called zolmatriptan but its not particulary cheap but does for me at least work. They come in 6 packs and I generally go through 2 a month.


Hiya,

I was advised by the neurology bloke at the National Neurology Hospital, that I shouldn't be taking more than 5 zolmitriptan per month, as it can 'transform' the migraines. As in increase your tendency to get more and more migraines over time, the more meds you take. If you have chronic migraines (regarded as more than 4/month) then you should be considered for preventative medication. I'm on topiramate for mine, I think that's the 4th med I tried and it works to some degree in that my migraines are less disabling and less intense now than before, although it hasn't reduced the frequency but I think that is because they are due to spinal instability). It has greatly reduced the frequency and intensity of my vertigo and ice-pick headaches though.

I was initially treated by my GP, then referred to a local headache & migraine clinic (where I am seen now) and I'm now being considered for an in-house referral at the National Neurology Hospital where I am seen for autonomic issues. So bug your GP about your migraines, you don't have to put up with them.
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Re: Headaches and Migraines

Postby DiSh » Mon Jun 27, 2011 11:49 pm

Thanks I don't see a neuro about my migraines (I do have one but he's a compromised spine specialist) so I Shall discuss this further with my gp as I didn't know about not taking more than five a month. Thanks for the heads up :duh: lol

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