Diagnosed with migraines, but I'm not so sure..

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Hi guys,

Just this morning, I’ve been diagnosed at the Walton Centre in Liverpool as having migraines. He’d advised to cut out certain foods, give it 4-6 weeks and see how I felt. I was told things would get worse before they improved. In truth, I feel no different.

It’s been a long, arduous journey to get to this point but migraines were actually something I’d already discarded as a possibility myself a long time ago. I’ve never suffered a single one in my life. I’d also always understood that the majority of migraines were intermittent (i.e. last a few days-week, not constant).

Anyway, back in May 2017 I was leaving work one evening to meet my wife outside and I felt a strange sensation sort of.. ‘come over’ me. It felt like it was enveloping my head, a strange fogginess or wooziness. It has been there ever since, without exception. At times, it’s worse and some times it’s manageable but it’s 24/7 and has been for nigh on 9 months. Along with this, I have a handful of other symptoms: slightly blurry vision (always), my eyes and ears are often sensitive to light and sound, distinct lack of a sense of smell (I have to be VERY close to whatever I’m smelling), lack of concentration when the fogginess is at its worst and a heavy head/dull ache in my neck and sometimes my head which I get now and again.

Just to clarify, the aches/pains I get in my head and neck are not what you’d traditionally class as a headache, I rarely get headaches (usually only when dehydrated or hungover – which I haven’t been for almost a year).

I’ve seen a chiropractor, had physio, tried anti-dizziness meds (I was never dizzy.. ), had a neck/head x-ray, a head MRI (both of which were clear). Some of the exercises the physio and chiro showed me have helped manage some of the symptoms but even they admitted whatever was going on was largely out of their remit.

As you can see I’m not convinced this migraine diagnosis is correct. I almost feel a bit of a fraud, as I know many people that do suffer with migraines and it can be debilitating and few of my own symptoms match any of theirs.

So, I’m just looking for a bit of advice or feedback. Does anybody suffer any/all of these or can clarify that the doctor is probably right or wrong?

DT

PS. apologies for the lengthy first post. I’m at a bit of a loss.

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9 Replies

  • Posted

    Hi DT

    Sounds to me that the doctor is probably right, no 2 people have the same symptoms, no 2 people have the same pain and there are so many different triggers. They can also start at any point in your life.

    Personally I've had them for about 40 of my 50 years, tried absolutely everything to get rid of them and nothing helps.  Last ditch attempt I tried 2 weeks ago and have gone on a wheat free, sugar free, alcohol free, chocolate free and low carb diet.  So far so good, no headache/migraine for 12 days, normally I can't go 4 days without  one.

    I also suffer from cervical spondylosis so have permanent neck pain which can start the headaches/migraines off, sometimes I don't know which condition is causing the other condition, but I maintain the neck pain with mild painkillers.

    I recently bought a book by an American doctor and fellow sufferer and it has really opened my eyes and mind to a different approach to life and particularly my diet, which was always good and healthy, but the changes I have implemented may be the thing that is going to help.

    You're lucky you've had an MRI etc, I've never been offered one so who knows what is going on upstairs!!

    I know I have come to the end of my tether where no-one will help and no-one is interested in helping, whether it be NHS or private, so I've had to do all the research myself.

    Sorry I can't be of any real help, but I can let you know about the book if you want??

    Basically see what other people say when they reply and try and nip it in the bud if you can.

    Good luck

    YL

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    • Posted

      Hi Yorkshire lass- I’d certainly be interested in the book! I eat well and follow good lifestyle habits, but am always open to new options. What is the title/author? Thanks, and good luck to you😊

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    • Posted

      Hi YL, knowing what the book is and who it's by would be a great start! It's been very frustrating, particularly as it isn't obvious as a migraine.

      As I said, I've got to a point where I have certain routines which help to manage things but it's so hard some days to feel normal.

      DT

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  • Posted

    Hi Davros Ty,

    im sorry you’ve had such a struggle! I want to reassure you that migraine most definitely can cause ongoing symptoms and make one feel terribly disconnected and foggy- even without head pain. I’ve experienced more of the type of migraines you’re describing than the painful ones, (although I can also get head pain, it’s usually mild). Hence, it took a lot of patience to string the list of seemingly unrelated, bizarre symptoms together and doc confirmed migraines.

    Im very sensitive to sound with migraines, neck can get very stiff and sore, vision hazy, or once in awhile it feels as if I’m wearing someone’s else’s glasses! As if eye muscles are being pulled in ways they aren’t used to, if that makes sense. I can get dizzy with them, but that isn’t the most common symptom lately. I can feel like my brain is a bit disconnected; as though part of it didn’t quite wake up with the rest of me! 

    My MRI and MRA were normal. Right now my doc is trying Nimodipine and it’s been hit or miss… it helped reduce my symptoms by about 30% on one occasion, but not that great on others. Next we will probably try ARBs type meds. Tell me about the dietary changes you’re trying! 

    Hang in there, and you are absolutely not an imposter. No one experiences these things in the same exact way.

     

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    • Posted

      Hi Roseburg, that's quite reassuring to know somebody else doesn't have a lot of the usual symptoms.

      My next bit of advice was to see my GP and get anti-migraine medication prescribed. Not sure what time, and knowing my GP I'll have to work hard to get the good stuff! I'll continue to make the dietary changes but I think I find it quite hard to believe that certain foods really affect me as I feel very little difference to my symptoms, regardless of what I have eaten!

      DT

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  • Posted

    Hi Davros,sorry to hear you've been suffering.Try to cut out all food and drinks with artificial sweetener and additives,(check the labels,sometimes the ingredients change from one shop to the next!)keep a diary and write down everything you eat,what the weather is like and even how long or stressful your day is! It sounds strange but it really helps to see how things affect your migraine intensity.Contact a migraine charity for advice as they really know their stuff and are such a help when you feel down.Hope this helps and let us know how you get on x

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