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Postural Migraines

Hi everyone,

I was hoping someone might know anything about my condition.

Last year I gained an infection on my leg from a trail hike/run. I took antibiotics but suffered an allergic reaction. I had the most horrendous all over headaches for 2 weeks and slept 20+ hours a day.

Since then I have left sided migraines if I'm stood up more than 10 minutes a day. My vision goes bad and suffer really bad tinnitus. Once the migraine comes on, I am done for and bedridden.

I have had all the tests, MRI, CT, CT Angiogram, Bloods you name it. All have been negative. 13 months down the line I am still the same.

I have tried Gabapentin, Amitriptyline and various supplements with no success.

I have no life. I just hope it's not for life. I'm 38 with 2 young daughters ๐Ÿ˜ž Has anyone heard of this?

Thank you in advance, Daniel Hodgson

  1. , I'm sorry to hear how your life has been affected by unrelenting migraines. I'm not too familiar with what you are experiencing, but there is a headache disorder referred to as headache attributed to infection. You stated that you got an infection during a hike. I am guessing that the infection has been eliminated by now? In addition to the tests you have received so far have they checked to see if you might have a spinal fluid leak? They checked that with my husband when he first was experiencing positional headaches. There is a certain amount of cerebral pressure that is sustained by your spinal fluid. In the realm of medication therapy have you been able to try any of the CGRP drugs? Many people have found these to be helpful in managing their migraine disease. Visual disturbances and tinnitus go hand in hand with migraines for many of us. I understand how frustrating it is to not have any definite answers or effective treatments, but keep moving forward and take time to document all your attacks and symptoms so you can present them to your doctor. I would also recommend finding a headache specialist if you don't already have one. Here is a link if you need to find a specialist near you.
    https://headaches.org/resources/healthcare-provider-finder/
    I hope this helps a bit. Please know that you are not alone in this. You are in a community of people who live with and understand migraine disease! Have a blessed day! Cheryl migraine.com team

    1. - I can't imagine dealing with a condition like this. https://www.caringmedical.com/prolotherapy-news/dysautomia-ehlers-danlos-joint-hypermobility-connection/. Firstly - I am no doctor - take my rambling with a grain of salt. When I began reading your comment/question what came to mind was Dysautonomia-Autonomic nervous system malfunction/POTS (Postural tachycardia syndrome)/ EDS (Ehlers-Danlos Syndrome)/Lyme disease (because you stated you had an infection - from a bite (??) I was evaluated for this a while ago when I became dizzy a lot upon standing, tachycardic, with severe headaches/migraines and vertigo. In the end, I wasn't diagnosed with any of these. My issue was related to my spine problem and vestibular migraine disease. But ... a headache specialist/complex neurologist may be able to help, as Cheryl above stated. Here is an article that may help understand these conditions. https://www.caringmedical.com/prolotherapy-news/dysautomia-ehlers-danlos-joint-hypermobility-connection/ I send strength your way so you can endure the journey you are embarked upon discovering a diagnosis. Rebecca (comm advc at Migraine.com)

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