help!: Hello all I'm looking for some... - National Migraine...

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help!

Shapark profile image
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Hello all I'm looking for some advice as I'm feeling at my wits end...I've suffered for years with migraines / headaches and I get two distinct types. First type are what I feel are classic migraines: come on really quickly, one sided intense pain in my head, nausea, sometimes I vomit, need to lie in dark room etc. If I catch it in time with imigran I get relief but if I'm too late it will go on for hours but rarely goes on longer than a 24 hour period. Seems to be driven by hormones and stress. The other headaches are the ones that are causing me more of an issue in terms of frequency. These tend to be less intense in terms of pain, one sided, usually wake up with it, and affect my cheek/ eye / head, pain is worse on movement. Sometimes I take painkillers but not often as mostly they don't work and I'm mindful of not causing rebound headache. My GP feels this is also migraine. Over the years I've been on all the usual preventers: amitriptyline, propranolol, pill ( to regulate hormones), something else to regulate hormones, and currently on Topiramate. Headaches have definately improved on this but the side effects are awful and I'm going back for a review on Monday as I've replaced one set of symptoms with another. Yes my pain is better but I've now got low mood, shocking memory, very upset stomach and just exhausted. I am hoping I get a referral on to neurology for an opinion as my quality of life is really being affected now by this. Not sure what if anything I'm asking on here but just feeling the need to off load with people who understand how crap this is!

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Shapark
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Cally01 profile image
Cally01

Hey 😆 your not alone, you can have two different types of migraine at the same time.

I have suffered for 36yrs and 3yrs ago i noticed a difference in my migraines, i have what i call "real migraines" aura, intense pain on one side, nausea, eyes agony etc just need to medicate and lay in the dark.

New ones...eye pressure pain / temple pain/ head hurts at back of skull/ neck pain/shoulder pain.....constant headache which escalates to full blown migraine pain daily but unable to control this pain. Had serious pain relief, oral morph, tramadol, codein, gabapentin, high levels os naproxen etc etc the list goes on and on but nothing helped the pain. Tried all prevention drugs, botox, GON , tens machines, chiropractors, physiotherapy. ..exausted all avenues.

This made me believe these migraines were something else. Specialist after specialist and eventually found one who knew straight away what was wrong with me. My jaw was causing all of the "new migraine" symptoms and I'm getting treatment

Hope this helps in some way. If you believe something else is causing this new type of migraine don't give up. We know our bodies best 😅

Shapark profile image
Shapark in reply toCally01

That's interesting Cally, I've often wondered if I grind my teeth in my sleep as I often wake with a headache and my jaw "clunks" on the right side. Can I ask what treatment are you getting ?

Cally01 profile image
Cally01 in reply toShapark

Look up TMJD symptoms and see if it's familiar.

I had an operation but because i had been diagnosed by neurology as having hemacrania continua no one would listen.

found a maxilofacial specialist and he instantly said i had no cartilage on the left side of my jaw. The op didn't work because my jaw is now locked.

I've had cerezen implants and so far so good 😅.

A dentist can confirm if you have TMJD.

Honkyjayne profile image
Honkyjayne

Hi I know how you feel I've been trying for years to sort my migrain but to no avail I've tryed all kinds of meds it horrible because there is no outside disability people don't understand what you going through this is enough to get you down hope you find some relief soon jay

Gambit62 profile image
Gambit62

Has your doctor checked your B12 levels

This is link to place where you can find list of symptoms of B12 deficiency

pernicious-anaemia-society....

unfortunately people can be highly symptomatic well into the range where most people are perfectly fine so getting a diagnosis can be very tricky if GP is determined to go by test results only (there's are various warnings about doing this but they don't have the profile they should), so if you think it is likely then please join the PAS forum on health unlocked

healthunlocked.com/pasoc

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