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Positional migraines? Pain goes away when lying down

At a loss..

I’ve been suffering from migraines since I was a teenager, they weren’t too frequent so I’d maybe have 1-2 a month and it didn’t really bother me. I remember they were painful but nothing like I’m experiencing now which is why I’m reaching out for your help!

About a year ago my migraine symptoms completely changed. I started getting double vision which was a new symptom. I went to get my eyes checked and ruled that out (plus it was always just before a migraine/during). The pain I was experiencing was getting worse each time I had a migraine and the length of time was longer, movement was particularly bad and would usually result in me vomiting. I went to the doctors and they gave me sumatriptan (which did not work for me). Then my migraines started changing again suddenly I found if I laid down the migraine would disappear, I discovered this by accident - I had awoken one day feeling fine and as soon as I stood up I had an overwhelming pulsing pain. I again contacted my doctors - they were worried at this point and scheduled an MRI and put me on preventative medication. I was put on amytriptiline and my acute medication was changed to naratriptan. The amytriptiline gave me daily headaches and the naratriptan worked less than the sumatriptan. After a quick google I saw positional headaches are an indicator of a CSF leak so I began researching and found I experience most of the symptoms. They can also be intermittent which is harder to diagnose

Meanwhile I awaited my MRI results - they came back saying there was an 6mm area of increased focus with low signal in the left CP angle. The doctors wanted another scan to investigate.

The second scan came back clear so the doctors were just like ‘yep it’s a migraine’. My preventative medication was changed again to Proponal - I tolerated the lower dose but when I increased the dose I had stomach issues. I was referred to a neurologist to assist me with these as by this point I am considered a chronic sufferer - over 15 headache days in a month and at least 1 migraine a week (or if I don’t have any for several weeks I’ll have a load in a row). This makes tracking them and triggers difficult because I can go weeks headache free - as I type this I’ve had 19 days headache free and had a migraine today which broke the streak. I explained all of this to the neurologist including my concerns about it being a CSF leak. He said due to the length of time I had been suffering from migraines that they likely were just migraines that are worse with movement and to keep a good routine, he changed my meds again, told me off for taking pain killers for normal headaches and told me to take aspirin if I know it’s a migraine. His prescription would take a little while to come through and to wait for that and keep logs.

Meanwhile I keep getting these positional migraine headaches, when I lie down the pain completely disappears and I don’t know whether to push harder with the doctors of if I am just being a hypochondriac.. I even had one that lasted 4 days - I ended up in the emergency room but again just got dismissed as the girl having a bad migraine.

Symptoms of CSF below - ticked are all my symptoms:

Head
* Headaches (frontal, parietal and occipital)✅
* Heaviness of head✅
* Feeling of pressure within the head✅
* Sensitivity of, or tingling sensations within, the scalp
* Dizziness or loss of balance✅
Ears/Hearing
* Tinnitus (ranging from ringing and buzzing to pulsatile tinnitus)✅
* Pressure sensations in the ears/ear popping
* Feeling of liquid in the ears
* Hearing loss (sometimes similar to Meniere’s disease) and dulled hearing✅
Eyes/Vision
* Blurry vision
* Double vision✅
* Pain behind eyes✅
* Pain when moving eyes✅
Facial
* Facial numbness✅
* Sinus pressure✅
* Jaw pain/tooth ache
* Temporomandibular joint pain and stiffness
Back, Neck & Limbs
* Neck pain and stiffness✅
* Back pain (area-specific and general)✅
* Tingling sensations and spasms in the spine, back, arms and sometimes legs
Other Symptoms
* Rapid heartbeat, particularly when sitting or standing✅
* Nausea and, in extreme cases, sickness✅
* Cognitive decline (including memory loss and loss of concentration)✅

Please has anyone else struggled with anything like this who can tell me if I should push the doctors more? The migraine medication never helps which would make sense if it’s not actually a migraine but I don’t know how I can make my doctors listen to my concerns and actually run some more tests. I feel so dismissed like I don’t matter. Please help

  1. Hi @isabellafletcher, please know you're not alone. I'm so sorry you don't feel heard by you doctor. I thought I would share these resources to help you connect with a headache specialist in your area:
    Board Certified Headache Specialist - bit.ly/2zxW6XF
    *UCNS diplomates - bit.ly/32lZZKQ
    National Headache Foundation Certified - bit.ly/3gA4j0u

    I hope that helps. Please stay in touch and let us know how you are doing. - Warm (((hugs))), Donna (team member)

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