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 Smol » Thu Jan 19, 2012 2:13 pm

I had THE worst headache in my entire life last night. it started in the afternoon, felt like an ice pick was being repeatedly stabbed just above and beghind my right temple. The whole area felt swollen and very sore to touch. (still feels bruised today) It lasted until just before I went to bed around half 11.
Anyone has this kind of headache before? I thought I was going to die, if it hadn't stopped I would've gone to A&E.
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Re: Headaches and Migraines

Postby nemonie » Mon Jan 23, 2012 4:54 am

It could have been due to your trigeminal nerve getting trapped. Trigeminal neuralgia is a chronic headache condition where the nerve gets annoyed on a fairly regular basis. It usually results in ice-pick like pain at the site of the nerve ending.
Ice-pick headaches (or primary stabbing headaches) are different and it's not really known what causes them. They generally last for a few seconds and occur over the temple or eye or above and behind the ear. They generally occur singly or in short cluster groups.
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Re: Headaches and Migraines

Postby Smol » Tue Jan 24, 2012 1:54 pm

Thanks Nemonie. I've only had one short incident since thank goodness. I don't know what I'd do if it started to happen regularly. Could this account for the headache and toothache sort of pain i experience too? it affects both upper and lower jaw on my right side and feels like toothache in 4 teeth same top 2 as bottom 2. does that makes any sense?
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Re: Headaches and Migraines

Postby nemonie » Wed Jan 25, 2012 2:02 am

Sounds like possibly occasional trigeminal neuralgia or temporomandibular joint disorder (the jaw) related headache. TgN tends to be sharp stabbing pain, whilst TMJ pain is usually more achy and tight and will often feel inflammed. It's possible to get both types and TMJ problems can trigger TgN flare ups.
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Re: Headaches and Migraines

Postby Neogetz » Tue Apr 17, 2012 6:02 pm

Hi, trying to work out the difference between my normal migraines and an occasional visitor.

Normally it feels like a band tightening in my head and has visible disturbance and light/sound sensitivity etc. I'm on meds to decrease the frequency of them.

Sometimes I get a different but equally intense headache centered around the base of my skull at the back. It feels like someone has shoved a knife up into my head, and the pain is totally unresponsive to painkillers.
Any idea what might be causing it?
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Re: Headaches and Migraines

Postby anna » Tue Apr 17, 2012 9:44 pm

Hiya, yeah, a few ideas. A - it could be another form of migraine. B - it could be a neck problem and C it could be a form of neuralgia. I personally would get it investigated for your own peace of mind. If it's any comfort, I'm not talking out of my you know what - I suffer from all three things!!
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Re: Headaches and Migraines

Postby nemonie » Tue Apr 17, 2012 9:46 pm

The odd headaches you're getting could possible be occipital neuralgia or Cervicogenic headaches. Occ Neuralgia can be due to a nerve being impinged or trapped in the neck or shoulder and often feels stabby or like an electric shock. Whilst a Cervicogenic headache tends to be more of an dull ache type headache that can be due to neck hypermobility. The headache trust website can be useful for more info, but new headaches should always be mentioned to your GP/specialist.
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Re: Headaches and Migraines

Postby Neogetz » Wed Apr 18, 2012 1:59 am

Thank you for the responses. I looked up the possibilities mentioned and it looks likely to be a neck issue. Can't get it checked by a doctor atm because a) i'm about to move home, b) it's rather hard to get a referral in stoke to start with, and my gp won't want to try and diagnose without having it checked out.

I hadn't really thought about it being connected but whenever these headaches occur I end up with a sensitivity in the tissues of my neck, sort of inflamed but not, normally focussed on the left. I just ignored it as coincidence but it is a symptom of both neuralgia and cervicogenic problems.

I'll add it to the list i'm making to discuss with my new GP whoever they may be when I move.
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Re: Headaches and Migraines

Postby nemonie » Wed Apr 18, 2012 7:49 pm

Do you get seen by a migraine/headache specialist for your migraines? If not you may want to ask for a referral to a headache/migraine specialist or neurologist when you get to your new place.
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Re: Headaches and Migraines

Postby mcbeauty » Tue Apr 24, 2012 2:58 pm

I used to get migraines every now and then. After my last pregnancy (which was also when everything else started going wrong physically) 3 years agothey started getting more and more frequent. I would get pain form the top of my head on the right hand side, down behind my eye, down my jaw and down the side of my neck, almost out to my shoulder accompanied by visual disturbance on that side, nausea etc. They would always start in the mornign, very slight, then get worse after lunchtims and continue to get worse over the next few hours. The only thing that would handle it was sleeping for several hours. I was pretty sure it was a problem with my neck and that was confirmed by the fact that sleeping helped, as the muscles would relax. I went to a chiropractor first about 2 and a half years ago, had my neck adjusted and hey presto, headaches disappeared! Only came back once since and went to Chiro again and fixed it again. I know (although didn't at the time) you have to be careful with Chiropractic when you're hypermobile but it was defintiely worth it to be rid of those headaches!
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Re: Headaches and Migraines

Postby cracker » Tue May 01, 2012 5:02 pm

when i get a bad headche it in my left eye i had it before & after squint surgey. i dont feel well with it. what do you think i shold do? should i let my gp know? is it hms related? any ideas please :hug: :daz:
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Re: Headaches and Migraines

Postby leashy11 » Tue May 01, 2012 9:02 pm

My headaches are usually trigger points in my neck muscles and I take a pain killer and then massage my neck as best I can. I also find heat to the neck or even on my head helps when I have a really bad one. Migraines defeat me though and I have to take Migraleve for a few days and take it easy.
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Re: Headaches and Migraines

Postby LazyHaze » Sun May 06, 2012 8:52 am

I've always had head aches/ migraines that last a good few days, sometime I can't stand up with them, never had them checked out because I've always put them down to my neck and just can't be bothered to get another "we don't know" from the doctors.

last week though I've started getting visual disturbances, optic migraines (I know this because my mum gets them). I'm going to go to the doctors if I get another one because vision isn't something you mess with. I was just wondering. I'm a mirror image of my mum with symptoms but unfortunately I'm getting them early in my life and she's in her 50s.

I this yet another branch of HMS? or is it a symptom of autonomic dysfunction? I know it's something to do with blood supply to the brain.
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Re: Headaches and Migraines

Postby nemonie » Sun May 06, 2012 4:41 pm

You should ask your doc about all your different headache types. Try making a headache diary for a month or so before going to see them - the London migraine clinic has some good diaries you can download - I write mine down in my paper diary then use their yearly overview diary to fill in (though I have added extra symbols for different headaches in the key) so my migraine doc can see how I am at our 3 month appointments.

Speaking off - my topiramate was reduced at my last appointment, as my migraine Doc reckoned my migraines are controlled (I disagree). We then made an appointment for 6 months time, but I have now moved and am now to be looked after by my new GP. Anyway - my migraines have been getting worse again. Not increasing in frequency too much but their intensity has been getting bad again. I had a delightful one earlier this week that lasted 2 days, I wasn't able to keep water down even for the first day.
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Re: Headaches and Migraines

Postby LazyHaze » Fri Jun 29, 2012 3:12 pm

I've been suffering with head aches for years now about 5/6 years? Sometime there so bad I HAVE to lay down, they've stared to happen more often and more painful, nothing touches them, I've read that some people use amitriptyline, but I'm on that already and must admit in desperation , tried it, didn't work, tries ice packs made it worse, co-codamol don't work, off the shelf anti inflammatories don't work, tea seems to be the only thin to sooth it. I've had optical migraines with auras, I've had about 4/5 within 2 days, not had any since then (May), never been to the doctors about head aches, not quite sure where to start with it, my doctors appointments nearly always end with disappointment lol I was looking for advise on the first "I've got headache" appointment, can I prepare anything before I go? Any websites to help me explain in doctor terms? Because all I can think off to say is my eyes ache, sun light and sounds hurt, I want to pull my head off of my spine. It could be my neck, shoulders, back and I have problems with all of them and many more, just need help to know what direction to go in so I don't cry after another appointment where nothing has been achieved.
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