Tell us about your symptoms and treatment experience. Take our survey here.

caret icon Back to all discussions

Need some advice on my diagnosis

Hi folks. Need some advice. Diagnosed with silent migraines ten years ago, didn't even think they would qualify. Had some odd things happen, which may or may not be auras. Burning smell, dizzy, and more recently tingling in my lips together with pins and needles which I've had for 20 years. Tested for ms 14 years ago and nothing.

Two months ago had a bugger of a migraine, much worse than usual. At the end of the third day my partner took me to A and E because she saw a slight droop at the end of my mouth. They treated me as if it was a TIA, CT, ecg and Mri, Took me off the road which was difficult. Stroke dr at cov didn't speak great English, thought it was a migraine at first then changed his mind to TIA. He suggested a holt monitor as it might have come from my heart. Put me on simvastatin and clopliergrol. Simvastin was awful - pins and needles worse than ever in my life. Stopped when changed to atorvastatin. Unhappy with the delay went to a private cardiologist who did a 2 week monitor and then she reread all the results. Since this I've had burning pain in my leg and much more muscle and joint pain. Have prostatitis and spondoloartropaty too!

She said there were a couple of white matter lesions in the subcortex but not to worry as they were "essentially normal" and not ms, probably due to migraine. She said in her opinion i had had a hemiplegic migraine and didn't need the meds but could take them if i wanted. I stopped!!

A few weeks ago i started to become dizzy whenever i had a migraine. No migraine, no dizzyness. GP put me on prochlorprrazine and sumattriptan., they work some, but not perfect.

Anyway, Dr Google says anything from epilepsy to ms! Not looking for a diagnosis but some general thoughts, particularly on the lips and dizzyness and hemi migraines. Don't know which type of specialist to see, GP seems disinterested - see a different one out of 10 every time i go. Good old BUPA it looks like!

Anyways, all thoughts welcome folks! Try hard not to freak out an army pensioner! Best. Chris

  1. Hi toysoldier,

    Thank you for sharing your story and being here with us - welcome! And freaking on anyone, especially a service person is a no go here!!

    It's not uncommon to experience dizziness and numbness/tingling in our extremities and face during a migraine attack. I know when I have a particularly bad migraine attack, my right check and ear will get warm, then tingly. And it's entirely possible to have a migraine attack with dizziness, without the headache phase. Here is an article I hope helps;https://migraine.com/migraine-symptoms/vertigo/.

    I also have a few white matter lesions (WML) from having long term migraine disease. This article from Dr. Mauskop, a true migraine expert, may help explain things; https://www.nyheadache.com/blog/mri-spots-white-matter-lesions-in-patients-with-migraines/.

    Hemiplegic migraine (HM) is a rare form of migraine disease. The difference between HM and migraine with aura is true motor weakness is found in HM. And it's not uncommon to have family members with HM as one of the causes is genetic. Take a look at this article for more information; https://migraine.com/migraine-types/familial-hemiplegic-migraine/.

    You may want to keep a detailed migraine diary for a few months to see if you are able to see if the migraine attacks have any patterns to them and possible triggers. When my son was nine years old, he started having migraine attacks. We (I) kept a detailed migraine diary for three months and discovered his attacks were triggered by lack of sleep, dark chocolate, too many nitrates, and dehydration. And these hold true to this day! When you get a moment take a look at this information; https://migraine.com/blog/keeping-migraine-diary-basics/.

    I'm going to stop now before I totally overwhelm you! Let me know what you think after you have a chance to absorb all that!

    Nancy

    Please read our rules before posting.