I am desperate to find out what is causing my symptoms, as they are really frightening and debilitating. I am hoping that someone else may recognise or understand what is happening to me.
I am seeing a neurologist who thinks it is mostly likely atypical migraine of some kind but that it could also be epilepsy although my symptoms don’t fit either diagnosis exactly.
My symptoms began in October 8 years ago. I started waking up in the early hours of the night, pulse racing, having a hot flush, feeling nauseous, having swirling/spinning coloured lights in my vision, with slight headache on one side.
These symptoms started occurring every night and have carried on ever since, although they are getting worse and wake me 2 to 3 times a night and last for up to an hour at a time. I am feeling very distressed and exhausted most of the time.
This Winter my symptoms have got so much worse and I have ended up in the Emergency dept at hospital a few times – heart rate over 200 bpm, irregular pulse and really bad chest pains going down left arm, sweating, extreme nausea etc. I honestly thought that I was about to die on one occasion. Blood tests showed I had not had a heart attack but these symptoms always go by the time the ambulance gets to me. Now I am on beta-blockers but they don’t stop the symptoms, just limit my heart rate to around 140 bpm during an attack.
Over the years I have recognised a pattern – the symptoms are definitely worse in the Winter (presume it’s the SAD effect on my brain chemistry) and also worse pre-menstrual and ovulation time. I am 50 years old and presume that my erratic hormone changes are having a detrimental effect on my symptoms also.
I am waiting for a series of EEG tests and further tests on my heart.
Here is an outline of my symptoms:
Wake up every night during dreaming phase of sleep.
Sudden onset of rapid, irregular pulse and high blood pressure.
Feeling of restriction in throat.
Tingling in limbs
Twitching stomach (lying still but I can feel it twitching and hear loud sloshing noises)
Coloured swirling lights in vision (eyes closed in dark)
Sensation of light being shone in top corner of right eye.
Darker than black shadows in parts of vision.
Spots of light in vision.
Sensation of spinning/ falling through a vortex of swirling coloured lights
Acute episodes of involuntary swallowing (choke momentarily)
Pain on back left hand side of head extending into neck (only mild pain)
Ringing in ears
Feeling hot and cold at the same time
Strong hypnic jerks and bang sensation in head when trying to fall back to sleep.
These symptoms come in clusters, each lasting from a few minutes up to an hour. I can have several clusters, 2 or 3 times a night.
I always wake during dreaming phase of sleep. I often dream of eating sweet food or laughing hysterically just prior to waking up. During an attack I feel extreme anxiety.
Some less frequent nocturnal symptoms in addition to those above:
‘Noises’ in head waking me up – eg. sudden gunshot, radio, various bangs.
Numbness down one side of my body.
Random intense pain in various parts of my body – usually short lived
Alice in Wonderland syndrome
Occasional symptoms in daytime:
Sudden feeling of dizziness, pallor, tunnel vision, feeling like I am about to pass out, rapid irregular pulse.
Sudden feeling very strange and not recognising where I am / faces etc.
Pin pricks of light in vision – like lights raining down/flying across vision.
Pounding headache which is much worse when bending down – usually lasts for 24-48 hours.
I also have occular migraines quite regularly, ie. sudden onset blind spot with shimmering crackle glass effect in centre of vision which gradually spreads out and disappears over 30 minutes or so.
I have noticed recently that I have suddenly felt incredibly irritable in the evening prior to having a particularly bad attack in the night.
Yesterday evening I suddenly experienced a rush of irritation. I went to bed and as I started falling asleep I had a sudden sensation of a massive bang in my head and body and my whole body jolted as though I had been zapped with high voltage. For the first time in months I slept through the night after this. I wonder if there is something about my brain that has to fire off this excessive hyperactivity each night (sometimes daytime)?
I am guessing that my hormones are altering my brain chemistry in a way that makes it liable to episodes of abnormal activity but it is epilepsy, migraine or something else?!
I would be really grateful if anyone could share similar experiences. Do you have nocturnal migraines? Is there such a thing as sleep induced migraine? Can migraines trigger tachycardia and arrhythmias and chest pain? Can migraine mimic epilepsy?
Desperate for help as my symptoms are getting worse and I am so frightened that I will have a heart attack or choke to death during one of these episodes.
Thank you for reading.