National Migraine Centre
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Is this chronic migraine

Hi I'm new to this

I'm a 33 year old female and I have been dealing with chronic headaches since i was 17 , when i say chronic it could be daily for weeks then nothing for weeks ect .

From age 17 untill 28 these headaches were severe head pain , one sided and throbbing with my heartbeat .

I saw 2 headache doctors during that period and was told i had migraine headaches .

From 28 untill now these headaches changed , they became more frequent but less severe .

The pain is 80% of the time one sided it is not throbbing but more constant , movements can make it worse if the headaches severe .

The pain is mostly mild to moderate unlike the migraines I use to have .

I do have sensitive to light and loud noise during theses headaches only if there moderate pain .

I also get a feeling of being of balance during some of these headaches , and nausea if the pain quite bad .

I was diagnosed with issues with my neck such as bone spurs and slipping of my cervical vertabra , this was diagnosed two years ago.

I have chronic shoulder and neck pain during the headaches and with out the headaches .

During my period i suffer really bad one sided head pain that makes me feel foggy and like im drugged up. How ever they are still non throbbing but will throb with movement such as doing house work .

Ever since these headaches havebecome more chronic and changed in nature , i get very odd feelings such as pins and needles sensation on my face in small spots , this happens without the headaches ? I get this feeling of not being able to focus my eyes , like its hard to track my eyes.

Also in the last 2 years i sometimes have flashers of light in my side vision it is only one eye and one flash , also i get black spots in my vision again only lasts a second . My eyes have been tested they are normal .

I take aspirn for these headaches high strength and it sometimes works if I catch the pain in time .

Does anyone have the same kind if head pain ?

Is this still migrains?

Thanks for reading

37 Replies
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Any autoimmune diseases in your family, in members past and present, including thyroid issues, or miscarriages or heart attacks or strokes at an early age? Also blotchy rashes?

If this is at all familiar come back to me.

MaryF

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Hi thanks for writing me , i have no family history of auto immune system disorders

I do have a family history of heart problems

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Are they mitral valve problems?, the only reason I ask is some people have Hughes Syndrome/APS and it is frequently missed by the medical profession and unfortunately Neurologists. I enclose below some information and also the blood tests needed which the GP can do.http://www.londonlupuscentre.co.uk/hughes-syndrome/diagnosis/

MaryF

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No no family history of that , i dont feel i have it i dont match the symptoms and my bloid tests are normal

Thank you though

Does this sound like migraine or tension

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Sorry I did not realise you had done those specific blood tests as doctors do not test for it unless they think to do so, it is possible to have this condition with no other family members having this.

I would also be very careful and test Iron, B12 and D. MaryF

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Hi MaryF. I’ve just read your response and was interested with what you meant. I’ve had migraines since I was 5. I have Hashimoto’s and my dad died of a heart attack at 70 (not so young but very sudden).

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I was recently diagnosed with migraines by a neurologist. I too have severe dizziness sometimes, flashes of lights, small blind spots, once the left side of my face went completely numb and I had stroke-like symptoms, and I sometimes get pins and needles on the left side of my face or numbness like it’s being touched through a thick blanket. The neurologist told me these are all migraine-related. I’ve only had migraines for a few months (since a mild concussion) but I have different migraines a few times a week. They are usually on the right side but they can start in so many different ways.

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I also have almost constant stress/tension headaches though. They are more like a throbbing band around my head. The migraines are stabbing behind my eye. Sometimes I get these symptoms and don’t get the migraine following them. My neurologist said that, too, is consistent with migraines.

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Hi thanks for writing me , sorry about your migrains

I never have numbness only the pins and needles sensation , it happens under my lips and nose or cheek .

Did your Dr say your tension like headaches across your forehead are still migrains ?

Thanks ☺

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My numbness is sometimes pins and needles too. The band around the head is usually stress and tension according to my doctor but mine comes from a neck injury (whiplash when I got the concussion).

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Hi. I am thinking possibly of auto immune issues too but only really if you have any orher health issues like ibs type symptons or fatigue joint pain any 9f those really and I woukd be considering another cause. Blood tests can be normal and scans too as they often are with me. If nothing else is going on then it is either bad migraine or the onset of some sort of ai condition which will develop over time.

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Hi thanks for replying to my post

I do have ibs and have pain in my hands , lower back and arms also my hips .

All my blood tests are perfect , so the dr keeps saying its just stress , but this is not stress im sure .

The headaches have been for many years but have changed in pattern and severity , so its become so confusing what I'm dealing with weather these headaches are still migrains or not .

To be honest I feel very old im 33 and feel like I'm 80 .

Sorry I'm ranting 😁

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Oh god this just drives me crazy. You have all indicators of auto immune disease. It yook me so so long to be diagnosed and this is why. Docs do rotine blood tests say everything is fine and leave you suffering.i would seriously doubt they have looked at crp esr or ana. Ask them to do that and ask for a referral re joint pain.

This is all too often the story. So no I don't think this routine migraine abd I don't think you are stressed in the way your dic is suggesting. You may be a bit stressed because you are feeling unwell but that is the cause of it. You are not unwell because you are stressed.

I kniw so many people who have gone through that. Please ask for those blood tests and see what cimes up and ask for a referral. Are you based in the UK?

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Whoops. Sorry for typos. Trying to type without glasses. Lol x

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Hi thanks

I did have those blood tests and they also were normal

This is why my dr said it was stress but the feelings i have are real .

Should I see a rheumatologist dr

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Yes mine often are too but I have Behcet's. And yes see a rheumatologist or an immunologist. But even some rheumatologists are hit and miss. If you live in the UK particularly in England the NHS Charter gives you patients choice which means you can pretty much demand a referal to wherever you want to be seen. Try to resrarch a good doctor before opting to go there one who treats things like Lupus Sjogren's Behcet's. Certainly don't think you have Behcet's because you would have ulceration but what it could be.. could be a range of things really.

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As I keep reading your responses I think you could have lyme.

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Does these headaches sound like migraine even if they have become less severe and not throbbing ?

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It is very familiar to me yes. I had a kind if chronic migraine syndrome associated with my disorder and it did change like this over time.

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Ok thank you I guess I'm having chroinc migrains

It's been such a long time dealing with headaches

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Allison

I was such a long time without a diagnosis. I’ve had symptoms for over 10 years. Then things went so bad after the birth of my baby that I saw a Neurologist. He diagnosed migraine.

All your symptoms and mine are completely attributable to migraine.

You don’t need to see a rheumatologist. Migraine can be so severe and give a host of ridiculous symptoms other than headache. I have so many symptoms it took ages to figure it out. The only real indicator was neck pain.

But the Neurologist digested all I had to say and simple said migraine. I totally believe and understand it is so misunderstood and under diagnosed.

Believe if your bloods are fine and there is nothing to see on a scan then it’s migraine.

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Hi do you get mild migrain aswell

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It was kid that you write about your migraines and I hope you find some help from some one.I have had severe migraines very day since I was 12.Some times to a point to passing out and having seizures with nausea.I've also got some nerve pain in my neck two.Light that kills your eyes with your migraine, and sick on your stomach that you vomit. You to an point that you crying in pain. I've been to the E.R. and doctors and told me I have to live with the pain.SORRY TO HEAR ABOUT YOU MIGRAINES. They don't have to feel like shit.GOOD LUCK TO YOU.

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Migraine every day. The whole thing about a migraine lasting few hrs to 72 hrs is a farce. It’s just something they use because they need guidelines. The Neurologist told me this. My daughter had now started to have headaches and it’s every day. From mild to severe pain. They say once the migraine centre in your brain has been activated it doesn’t turn off, it just flares up worse at times.

Do you have any children? I am 34.

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Hi thank you so much for writing me

I don't have kids , soon hoping

Yes my headaches range from mild pain daily then I get flare ups of bad headaches u have this chroinc

Sorry about your daughter

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When I was pregnant all my symptoms disappeared. But came back with a vengeance a couple of weeks after the birth. This is common. But I didn’t have the diagnosis until after. Just keep this in mind if you plan to have children.

Hormones have a massive amount to play in migraine.

Look on the reddit migraine forum. There is a wealth of infomatoon and so many people suffering like you.

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Sounds terrible especially having those sleepless nights witha baby , that scares me .

I also get really bad head pain during pms and my period , my neck and shoulders get very tight also so i normally see s lady for a deep tissue massage and it normally helps .

Do your neck and shoulders become very tight also during your head pains ?

I also suffer terrible pms on top if the headaches , drives me crazy at times

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Yes. It really started with pain in my neck and shoulders. I thought it must be something like fibromyalgia. The neck pain is constant. Head off and on. Stiff neck is a symptom that wasn’t really highlighted enough before in migraine. Keep a check on your cycle and headaches.

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Thank you very much for your advice ☺

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Hi,

Everything your describing here is still part of migraine. Pain doesn't have to be throbbing or in one place in the head to be migraine, it can be searing, constant and all over the head. Which is what I suffer from.

Pins & needles, numbness, electrical sensations in your face, hand, arm or tongue,are part of having and experiencing a motor aura. A cortical spreading depression that slowly travels across the back of the brain towards the front.

I too get pain in my eyes daily and my eyes are normal on a scan too, migraines can effect the eyes and nasal passages. Causing increased pain, pressure or watery secretions that mimick having a cold or sinus infection.

Mensturating can cause or be a worsening factor for suffering migraines. Hormonal changes in your estrogen levels cause the increased pain. It's one reason why there are more women who suffer this disorder than men.

Pain in your neck is also a migraine symptom.

Hope this helps.

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Thanks you for your reply ☺

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Glad to be of help

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For years I suffered from chronic migraines. A neurologist tried anti depressants and all types of migraine drugs nothing helped. I went to a holistic doctor who put me on an allergy free diet. No gluten, dairy, sugar, yeast, soy or corn and no tomatoes. I have not had a migraine in years. It worked for me.

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it has only been 9 months since my episodic migraines became chronic.

10 weeks ago I enlisted the help of a Nutritionist. She put me on a Low tyramine, low histamine and no artificial preservatives/ flavourings diet.

Although I still have the daily migraines it has reduced the intensity so where I was having 2/3 migraines a week, which would require triptans and would completely prevent me from being able to do simple daily activities at home, this has reduced to once every week and a half.

I would recommend getting expert advice with changing diet as its important to make sure you are having a balanced diet. I have been directed to take a specific range of supplements too

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Have you been tested for Lyme and co infections?

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Hi Allison - you sound very much like me (except I'm 68!). I've had migraines since puberty but in the last 15 years I've had pronounced neck and shoulder pain (muscle knots - trigger points?) which always indicate a headache coming on. But - a migraine? Quite by chance I found an old (from 1988) article in the NY Times by Daniel Goleman, who talked about chronic neck and shoulder pain. This prompted me to see a physiotherapist, who (talk about good timing) had just come back from a workshop on 'cervicogenic' headaches. So she has been doing manipulation to my neck and shoulder muscles - plus IMS treatments (which I've had before but now these seem to be having some effect - so maybe she's hit exactly the right spots?). But the biggest breakthrough for me has been her explaining the difference between 'tonic' and 'phasic' neck muscles and giving me a very simple (but also difficult) exercise to strengthen the tonic muscles in my neck. I am cautiously - but very - optimistic that all this is helping. The one puzzle we can't figure out is that when I do feel that familiar 'uh oh' of a headache coming on, if I take even a quarter of a Sumatriptan pill, the headache feeling goes away. So I can't figure that out yet. Hope this is of some help. I'll find the link to the Goleman article which was a real 'aha' moment for me. Best, Heather, Victoria, BC

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Here's the link to the NY Times article I mentioned:

nytimes.com/1986/09/28/maga...

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