Yes occipital pain and eye pain both related to raised intracranial pressure, I’d say, but you need to know why – I’d hazard a guess at some degree of cerebellar ectopia on your MRI, coupled with possible instability due to EDS. Something in your past has increased the volume of the contents of your skull – does Mono do this ? I don’t know.
The weird feeling from looking down – I SOoo get this, I have it if I look to extremes in any direction, it makes me feel really unwell if I hold the gaze for any length of time, does it affect you this way ? I sometimes feel like it’s going to cause a fit or something.
I have had to sleep sitting bolt upright for the last 10+ years, as my symptoms were even worse laying down. I still got real bad symptoms but at least I was alive. For the last 5 years I’ve worn a rigid (Philadelphia) cervical collar which has helped no end. When you describe sitting upright in bed, it’s no good if the pillow forces your head into flexion, you need to avoid this at all costs, you have to support your neck and stop anything from pushing your head forwards.
Check what position your head is in on an evening, when your heart-rate is low (Bradycardic). Many of us are real bad in a morning and improve as the day goes on, we seem to suffer something overnight and bear the consequences the next day.
Once back in England, do a ‘Poor Mans Tilt Test’. It’s 8 years ago since I learned about this, so things might have changed a little, but if I remember correctly, it goes something like this:
Quick ‘Poor Man’s Tilt Test’.
Somewhere to lay down and a wall very closeby to lean against
BP pressure cuff
Pen & Paper
Someone to push the start button, write the results & symptoms and to help you
Breath normal and relax, do not talk (except to summon help, if you need it)
1) Lie still and rest for 15 minutes minutes, then take your blood pressure and pulse.
2) Sit up for 15 minutes, then take your blood pressure and pulse.
3) Stand up (against the wall), then take your blood pressure and pulse.
4) Stand quiet and still for 3 minutes, take your blood pressure and pulse.
5) Stand quiet and still for another 3 minutes take your blood pressure and pulse.
6) Stand quiet and still for another 3 minutes take your blood pressure and pulse.
At point 3, if your pulse rises by at least 30 bpm (beats per minute), you can bet you have POTS (Postural Orthostatic Tachycardia Syndrome). For some it might take until point 6.
I believe a 20 point drop in Systolic BP (and a 10 point drop in Diastolic BP) shows Orthostatic HYPOtension too. Many POTS people do not suffer this. Some suffer Orthostatic HYPERtension (me included) where the longer we stand, the higher our BP goes.
If the above test indicates you may have POTS by increasing your heartbeat by 30, tell your GP when you see him. Suggest a referral to Prof Christopher Mathias, Autonomic Referral Unit, UCLH, London.