Can anyone help

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Please could someone tell me if any of the below sounds like migraines or some other type of headache or anything else entirely.

The reason I ask is the cycle of my headaches. They can come and go fairly swiftly or last for days but I have other symptoms which are not normal headache symptoms and they don't feel like a normal headache.

I don't get what aura looks like on Google pictures but my eyes go hazy and feel pressurised. My nose and whole face will hurt with a numb tingling type feeling and tight, I get severe achey ear pain but no sign of infection and when the whole pain goes so does the ear pain. I do get a bit nauseas but not so bad that I'm actually sick. My neck, jaw and shoulders hurt a lot but again this can disappear when the pain goes as a whole.

I also start yawning a lot, not from tiredness, it seems more like my body trying to get something out. The yawning is one of the first signs that I know things are gonna get a lot worse. My heart also feels like it's struggling to beat or that it's skipping beats. It's not quite palpitation but more heaviness . As they day goes on I get more fatigued and other parts of my body start to ache and feel a bit tingly. Like the bloods stopped getting round properly.

I have had mri before and apart from pineal cyst all looked normal, I wAs at one point given a possible migraine diagnosis and put on topomax but it made me feel terribly flat so I stopped.

I know 100% that the weather really affects me and generally if it gets muggy, stormy, rainy I'll get this attack, I can feel the weather change in my head. I haven't managed to connect any other things yet.

If anyone can relate and tell me if anything helps them and what their diagnosis is I'd love to know what kind of headache this is and how to treat it.

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14 Replies

  • Posted

    Imitrex works for me.

    It is not a preventative pill...but it is a pill that works immediately when you get these headaches.

    I have Fibromyalgia...and it does sound like you have alot of my symptoms....mostly regarding the muggy weather.

    Almost all of my severe headaches occur when the weather is humid or it is going to rain or is raining.

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    • Posted

      Hi Missy,

      I have tried a migraine pill from the chemist, i think it was imtrex or imgran, i only tried it once and that made me feel slightly dizzy, tired and have a normal headache. Not sure if thats normal but it worried me so didnt take one again. 

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  • Posted

    Could you have been exposed to mold? My first thought is sinus infection. Tooth problems or root canal in recent history?
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    • Posted

      My sinuses are ok i think, theres no sign of infection and my teeth are very good however i do get very sore teeth when these attacks happen. Dont think ive been exposed to mold.
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  • Posted

    Hi i suffer from chronic migraine i can relate to the yawning.i start yawning days before an attack and do feel really tired.also the weather seems to bring mine on i had a migraine fir the full month of april.i usually take zomig rapid melt prescribed by the doctor.hope this helps
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  • Posted

    Hi Charlotte,

    No you are right its not a typical migraine, it sounds more like a variation of Hemiplegic migraine.  Do you get any other symptoms like tingling or pins and needles in left or right side of your body, arms or legs?  A lot of the symptoms you describe are similar to what I get with HM, I am admitted to hospital because it resembles a stroke.  Thankfully though since starting the Botox programme they have been few and far between.

    Have you had an MRI scan or seen your dr about these headaches?

    Let us know how you get on, best wishes

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    • Posted

      Hi Personal,

      I have looked at those before, ive read the symptoms but I dont think my symptoms are as severe as HM sufferers, its hard to tell from reading symptoms how intense they actually should be to a person but although i do get tingling in arms and legs i dont get completely paralized or anything that severe. I have never needed A and E. It feels like my left side of face is drooping or being pulled down and it feels numb but if i touch my face i can still feel it so i guess its not truly numb. 

      I also have a feeling of fluid in my head, pressure in my nose, eyes and ears and it feels like at anytime its going to burst and pour out, i feel like that woud help the pain.

      I have had an MRI and was only found to have a pineal cyst which they said was incidental,  dehydration on c5/c6 also but again they said it was normal.

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    • Posted

      Hi Charlotte,

      Those are clasic symptoms of HM, do you just get pins and needles etc on one side?  But also its similar to a stroke.  I know because I get them, but more bad weakness down my left side.  My GP always tells me to call an ambulance as nobody knows, not even paramedics if Im actually having a stroke or not.

      So thats something to think about Charlotte.

      Good luck, best wishes and take care

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  • Posted

    hi, yes this sounds so familiar to me. I have an auto immune disorder and the pain you are describing with the aura you mention and the neck pain...this is similar to my symptoms. I have a lot of other symptoms too. 

    Most migraine solutions don't work for me because the migraine is caused by inflammation and all that helps is to keep that under control.

    Weather affects me terribly too. 

    Also the heart pain. That is common for me too. The missing a beat sensation....I get that too when disease is active. 

    I have been discussing this elsewhere and would say to you that you need to see the right kind of specialist. Not sure where you are in the country. There is a great doctor at the Royal Free called Desmond Kidd. He is a neurologist with a special interest in auto immune disorders. 

    Another type of specialist who could help is an immunologist. Ask for a referral. 

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    • Posted

      Hi Margaret,

      What type of autoimmune disorder do you have, ive been tested thoroughly for autoimmune disease and some tests ANA specifically came back high a few times, then normal, i did at one point end up on plaquenil from a rheumy as he suspected lupus as did a neurologist i saw but all tests came back clear in the end so i stopped. I have also been tested for lymes twice. Ill have a look at the Dr in London. Thank you


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  • Posted

    You can get occipital nerve blocks for migraines/neuralgia. Your pain sounds like it arises from your facial nerve. Facial migraines are a thing. If it occurs on both sides its more likley migraine than trigeminal neuralgia.

    Aura is anything that affects your senses. Like ears ringing etc. Not just spots in vision. I believe nausea is a aura.

    I get pretty much exactly what you just explained but all day everyday.

    Only successes ive had are nerve blocks and endep for chronic pain. Topimate, lyrica, deseril and sodium val didnt help.

    Sandomigrane is quite effective. I personally grew tolerant to it and needed a padlock for my fridge.

    You may also be a botox candidate. I find blocks more effective.

    Things you should rule our are degnerative disease in your tmj.

    Intercranial pressure is not too high.

    Have your magnesium levels checked. Chronic migraine sufferes typically have low magnesium which causes spasm. Mag chelate is the best.

    Thats all I've got... Hope it helps. These are based on my opinions from personal experiance so are subjective.

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