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Nocturnal Migraine & Heart Issues

  • By Blodwen

    Hi Everyone.

    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.
    Breathlessness
    Chest pain
    Sweating/flushing
    Nausea
    Feeling of restriction in throat.
    Tingling in limbs
    Twitching muscles
    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.

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  • By Ronan

    Get to your doctor, walk-in clinic. If you must, go to the Emergency Room. If you need to, call an ambulance.

    There are nurses and other health practitioners but it’s really for general advice… You really need to see a doctor ASAP. This sounds scary and you really need to be physically seen by a doctor.

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  • By Nancy Harris Bonk Moderator

    HI Blodwin,

    Thank you for sharing that with us and being here at Migraine.com – welcome!

    I’m sorry you are having a difficult time, the spell or attacks certainly sound scary. When are you seeing the neurologist again? Have you shared with him these exact symptoms? If not, I would include this very detailed post and share it with the doctor. Then ask for a sleep study, there a lots of sleep disorders beside sleep apnea that can trigger a migraine attack.

    Does anything trigger these attacks? As much as I wish I could tell you what is going on, only a qualified doctor can do that. If you don’t get anywhere with your current doctor, please seek out a second, third or fourth opinion.

    Please keep us posted,
    Nancy

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  • By Blodwen

    Hi, thank you for your replies, I appreciate it very much.

    I have been to the Emergency Room three times in the last few months. I am frightened to go to sleep each night.

    I am being seen at a specialist Neurology hospital but waiting for EEG tests. I have asked for a polysomnography test but have been told there is a very long waiting list for this.

    Yes, I have given the neurologist a very detailed description of all my symptoms which have been well documented.

    I have had a 7-day holter monitor ECG to see what was happening with my heart, but nothing concerning showed up (I was taking beta-blockers at the time). Only thing they noted was that I had ‘significant pauses’ of over 2 seconds and 1st degree heart block, but they didn’t seem to think this was unusual.

    My neurologist did think this was significant so has requested further tests for me: CT scan of my heart, a stress test, and 24 hour urine tests to rule out carcinoid tumour or pheochromocytoma. I don’t think the latter is likely as my symptoms occur mostly at night during specific phases of sleep. I think it’s more likely to be migraine or epilepsy.

    I am not sure how long I can keep going. Apart from my neurologist, no-one in the medical profession takes me seriously. For years the general opinion was that I had a panic disorder and I was referred to Psychology. After seeing various people and going on mindfulness and mood awareness courses etc. they came to the conclusion that it was not a psychological problem. So, back to the drawing board!

    For years my symptoms have been dismissed as anxiety but about 12 months ago I paid a lot of money to see a neurologist that specialised in migraines and sleep disorders and I have a lot of confidence in him, however, I am unable to get tests quickly and I still face a lot of disbelief.

    Everytime I end up in Emergency the on-call doctors just dismiss my symptoms as anxiety and send me home. My local doctor says call an ambulance if you get chest pains and breathlessness but I’ve said I can’t phone them every night. They are queuing outside with so many patients. Last time I was lying in the ambulance for four hours waiting to go into hospital.

    I am just hoping and praying that I will live long enough to find out what is causing these symptoms and get treatment.

    My neurologist did mention that he might try me on lamotrigine but wants me to have the EEG first……I am waiting and praying….

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  • By Nancy Harris Bonk Moderator

    Hi Blodwen,

    Thank you for getting back to us. Other chronic conditions can certainly make treating migraine disease a bit more complicated, but good to hear your neurologist is in your corner.

    Have you had these tests, or are you waiting to have them? Waiting to have tests done and/or for results can be frustrating –
    hang in there!

    Please don’t lose hope – we’re here for you! However, if you feel you are in danger of losing all hope, I’d like to provide our crisis resources for you: https://migraine.com/blog/migraine-crisis-help/.

    Let me know what I can do to help!
    Nancy

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  • By Blodwen

    Hi there, just an update. No, I have not yet had the tests. I have checked how long I have to wait for the EEG and the current waiting time is four months! Scary having to wait so long.

    I ended up in the Emergency dept. again at the weekend. This time my symptoms were in the daytime. I suddenly felt hot and cold at the same time and really faint and dizzy, my heart fluttered then went incredibly high and my face and lips were white.

    Last night I had some new and strange symptoms. I woke as usual, during dreaming, felt very cold then after a minute or so felt hot and started sweating, heart racing, stomach twitching, throat felt constricted. After about 20 minutes or so the symptoms eased and I felt completely normal, then the coloured swirling lights started, then I got spasms in my legs and torso. As I got more tired and started to fall asleep, I felt like my right leg below the knee, was floating in space. It was a strange sensation, it seemed to last only seconds then it felt normal again and I could feel it’s weight back on the mattress. It happened several times – it was like my leg was having an out of body experience all by itself!

    Next thing, as I dozed off again I was suddenly woken by my jaw smashing violently closed! I have tried to replicate this but it is impossible to recreate the sudden force and bang of my teeth clashing together. I was taken aback and relieved that my tongue did not get caught in between. I am really scared that it will happen again and I will severely cut my tongue.

    I just can’t understand what is going on and it is exhausting having this every night. I feel slightly dizzy all day every day, especially if I raise my head up or look down, and my legs feel weak and shaky a lot of the time.

    I am hanging on but it’s so, so hard, I would give anything to have one night’s sleep in peace and tranquility instead of my horror nights.

    Thank you for your support, it helps to know that someone out there cares.

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