1229715 tn?1267461218

Can anyone explain this?


I'm female, 21 years old, and have had progressive symptoms over the past 2 1/2 - 3 years. I'm here not looking for a diagnosis, but simply scouting for some information since my doctors haven't really done much for me during the above stated time period.

As far as I'm aware, nothing which is about to be mentioned concerning my symptoms exist in my family.

During the 2 1/2 - 3 years time period, I've been being unsuccessfully treated for "migraine" headache. I've been tried on a range of triptyline tablets of different doses (which did nothing but make me grouchy), migard (which did nothing but increase body sensations and feeling faint), paracetamol, codeine (made me feel light headed), aspirin and dozens more over the counter pain relief. I can't try out beta-blockers due to my asthma, which were the last resort before trying a totally different range of tablets. I've recently had the depo contraceptive injection so I can try out some new medication, which took me by surprise, since they're anti-epileptics (seriously, for a headache?) I can't remember what the name is of this new medication, as I don't have the labelled box since I don’t start it 'til next week.

I have been diagnosed with asthma since being a child, and around 2 1/2 years ago with curvature of the spine.
...I and my twin Brother was born prematurely weighing no more than a couple small bags of sugar, and I was on life support for a good while after birth. For that reason I was tested for possible brain damage, which the result was negative. (it might be worth mentioning)

History: - aged 14, I passed out at school. I had sustained quite a bang to my head. I remember feeling dizzy and "strange", and it was like I'd suddenly lost all muscle tone and I could see from my eyes that I was falling towards the floor.
I felt quite a bang on my head from falling into the counter, which had knocked me unconscious. I was out cold for 10 minutes I was told.
Another time, less than a year later I lost consciousness again with no warning before hand (sensations, etc) whilst I was sat down in a room full of people, but no one had noticed that I'd passed out so I don't know how long I was out for. I came back around and noticed I had lost bladder control whilst I was passed out, which was rather embarrassing.
During my teen years, I passed out almost every time I'd come on my periods, but I've always put it down to the severe abdominal pain and high temperature.

At the age of 18, I started getting bad headaches with dizziness, weird sounds in my ears but mostly ringing, earaches, and feeling faint which would put me on edge and make me feel stressed and nervous because it was making me feel unwell and for that reason, I got dismissed with anxiety. I then learned to deal with the stress and nervousness, which I did successfully.
Around 6 months later, I got a new headache, I mean, the first headache I was getting was bad, but this was on a whole new level and I couldn’t take the pain. I was actually shouting in agony with it whilst clenching my head with my arms curled round it and I was loosing seconds here and there where I think I was blacking out. I couldn’t take it and asked for a ride to A&E. In the car, I was getting a fuzzy/static like cold sensation building up in the back of my head like pressure and then it would just shoot down my spine causing my shoulders the violently jerk and my legs to stretch outwards in front of me. It happened around 3 times. I’d got in the hospital, and was in the waiting room and could feel that feeling in the back of my head building up again. It shot down my spine again, but this time it had pulled my head backward, legs outwards, shoulders violently jerking and felt my eyes rolling in to the back of my head. I’m not sure if I’d lost conscious after my eyes rolled or not. But this kept happening with a rough 5 minute gap in-between each ‘episode’, and it was going on since entering the building ‘til just before being seen 45 mins later by a Doctor! :-/ I got told to lye down for a moment and someone will be back to see me. Someone did come back to see me, but only to give me some paracetamol. I saw my Doctor a couple days later, didn’t really let me finish telling him what had happened at A&E, and sorta butted in and said “it wasn’t a seizure”, which was the closest to an answer I got to what had happened. A couple more months had passed and I then had a couple month gap where my headaches were mild enough to not really bother about.
The headaches seem to have come back with a vengeance after that gap.

Over these past couple of months I’ve been experiencing weird “episodes”. Muscles keep twitching allover including my face. They are always there at some point when I’m in bed trying to get sleep but do also happen during the day. I’ve had one episode where my arm involuntary flug outwards. At the same time my arm flung outwards, I felt an intense ‘shock-like’ feeling at the back of my head, as if someone had put a stun gun on me. I’ve had the full limb flinging jerks dotted out over the past from being young but without the head pain. My eye left eye seems to turn inwards which interrupts my focus. I tend to stare in to space in my own little world so to speak when that happens with my eye. I get rising feeling in my stomach sometimes with the muscles twitches along with rarely involuntary laughter or fear and occasional tingling sensations. Weakness, mostly L sided. Purple sparks in vision. Pain behind L eye. Involuntary head bobbing (as if saying yes or no). Muscles tingling, face tingling, tingling in hands. Cold/ tingling sensations shooting through body and in/ around my head. Earache, ringing in ears, sound as if the wind was blowing in my ears. Muscles pulsing and feeling of movement like they're  being squeezed. In my L arm, it sometimes seizes up, which hurts, and then it starts shaking when it's relived of the tension. I also get it in my thumbs a lot, too. Sometimes my thumb will be moving and would be unaware of it unless I was to see it happening, so maybe it's happening in other body parts, too?

I got sent to A&E around the time these twitches started happening incase I had a TIA, because the L side of my face had partially lost it’s muscle tone and upon examination, I’d also had slight L sided limb weakness. I got sent home cos it was unlikely that I’d had one. it happened again during one of these ‘twitching episodes’ and it felt like it was my facial muscle pulling down on my face.

Whilst Sleeping: - I’ve been told by a sleeping partner that I was laid on my side, I’d grabbed a hold of him in my and my leg was raised twitching away.
Another time I was in bed, trying to get to sleep but I was feeling ‘off’ so I was having difficulties trying to sleep. I remember looking at the clock, the time was half past, I closed my eyes and I think I’d blacked out. I had a really vivid dream that I got freaked out from my sleep, woke up grabbing my partner shaking him asking “what’s going on”. Getting louder and louder every time I asked it and I’d lost complete muscle tone in my tongue and L side of face and I was freaking out and thrashing my limbs around. I coulda swore I woke up for a split second during the dream clenching my teeth and then slipped back in to the dream where I was screaming and thrashing around. I then opened my eyes, woke up fully, my shoulders were in agony and only 5 mins had passed on the clock in time. Is it normal to dream the second you fall a sleep, and it only last 5 mins then you’re back to being fully awake and alert? The dream thing may sound a bit weird but it freaked me out so I thought I’d best mention it!

If anyone has any ideas, please write them down and they will be very much appreciated!! 
2 Responses
Avatar universal
Hi there. Are you by any chance in the medical profession? Your notes are very thorough. Um, I wanted to address a couple of things, from a patient's perspective and also that of a disabled nurse. Anything I say here is just my opinion and you should always refer to your doctor.

I think your problem may not be caused by one thing, but by 2 or even 3. First of all, it certainly sounds like your episode at age 14 was a classic grand mal seizure. Losing bladder control is a part of convulsions (same thing, btw). With all these symptoms, it sure seems like you have some form of epilepsy. As you may know, epilepsy can be in the form of a missed moment in time as you gaze away, or it can be full-tilt convulsions. I have worn the diagnose of "complex partial seizures" and "temporal lobe epilepsy." Before whatever seizure activity occurs, some people experience an "aura." It can be a visual, auditory, or sensory experience. Mine was...you guessed it: headaches.

The epilepsy doesn't factor into my life anymore, but then I also have bipolar disorder, and so I'm always on anticonvulsant medication (in the form of antidepressants) to stabilize my mood...or bad things happen. I'm also on other psych meds such as benzodiazapenes and antipsychotics, and they can have an anticonvulsant effect.

Which brings up your comment on antidepressants. These drugs are one the many classes of drugs which are becoming widely used to treat off-label diseases. Let's take aspirin. It was first used to fight pain...headaches, ironically; yet aspirin is is used by gazillions of people (including me) to prevent heart attacks and strokes. Well, antidepressants were found to limit seizure, so off-label they went (thankfully, as they have less side effects!).

Well, I hope something of what I said is helpful. This journey is a teacher. Learn, young Padawan. ;-)
Avatar universal
Hi, I read your detailed development and progression of symptoms and though you have tried to say many things and been to many specialists, I think you need to consult a neurologist to rule out multiple sclerosis, a chronic demyelinating disorder where the disease phase is characterized by active phase and remissions. It has multiple symptoms and signs and is a diagnosis of exclusion. The symptoms of multiple sclerosis are loss of balance, muscle spasms, numbness in any area, problems with walking and coordination, tremors in one or more arms and legs. Bowel and bladder symptoms include frequency of micturition, urine leakage, eye symptoms like double vision uncontrollable rapid eye movements, facial pain, painful muscle spasms, tingling, burning in arms or legs, depression, dizziness, hearing loss, fatigue etc. The treatment is essentially limited to symptomatic therapy so the course of action would not change much whether MS has been diagnosed or not. Apart from clinical neurological examination, MRI shows MS as paler areas of demyelination, two different episodes of demyelination separated by one month in at least two different brain locations. Spinal tap is done and CSF electrophoresis reveals oligoclonal bands suggestive of immune activity, which is suggestive but not diagnostic of MS. Demyelinating neurons, transmit nerve signals slower than non-demyelinated ones and can be detected with EP tests. These are visual evoked potentials, brain stem auditory evoked response, and somatosensory evoked potential. Slower nerve responses in any one of these is not confirmatory of MS but can be used to complement diagnosis along with a neurological examination, medical history and an MRI in addition, a spinal tap. Therefore, it would be prudent to consult your neurologist with these concerns. Hope this helps. Take care.

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