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Could this be epilepsy?

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Old 06-12-2008, 01:31 PM   #1
Join Date: Jun 2008
Location: Toronto
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Dbird72 HB User
Could this be epilepsy?

Hi there, I posted this in the general health area and was advised to post here, so here is a copy of it.

Hi there, my name is Dee. I am 36 years old, from Ontario Canada. I am basically at the end of what has been a very long rope, and I come here hoping to find some sort of guidance.

Here is a brief background first:

I was diagnosed at age 15 as Chemically Imbalanced and put on Desipramine. I hallucinated on it horribly and after 6 months stopped taking it against my parents and doctors wishes. Since then I have been on a miriad of depression related medicines, including Prozak, Amytriptaline, and most recently (still on) Xanax for panic.

At age 19 I began to get bad migraine - about 1-3 per week. An Endocrinologist diagnosed me with PCOS which I was put on birth control for. I was taken off birth control a few years later due to severity of migraine, and risk of stroke in my family. I am adopted, so my health history is sketchy at best, but I do know there is stroke on both sides, a history of brain tumor through paternal grandfather, and my biological mother has what she called "Familial Disease" which she said is a benign form of PD.

At 29 I had my first and only child, and my migraine went away. And for two years I did not get migraine at all. Then I started to get anxiety attacks, right around the same time my migraine returned. I don't get them often, a few a year, but I get the aura sensation with my eyes frequently enough - a headache does not usually accompany.

On January 8th 2007 (a year and a half ago) I went to bed one night and discovered as I was falling asleep that my body was shaking. I thought we were having an earth quake. I got up immediately and had an anxiety attack. I took my medicine and went back to bed.

The next night it occurred again, and the night after that as well. I became worried so I went to my family doctor. She scheduled tests, and for months I waited to get results back from blood work, a 24 hour heart halter, and a heart ultrasound. All the while, these tremors would occur about every 3 weeks for about 3 nights in a row, always when laying down. I began to be sure it was hormonal.

In May of 07 I got my results back - other than a slight palpitation, everything was ok - blood work was perfect. I had been concerned about my sugar as diabetes is also a big one in my biological family, but my sugar was perfect. My doctor sort of wrote it off at that point. And I lived with this tremor for the following 10 months.

Then in March of this year (08) I experienced the tremor while at work, while sitting and alert. I rushed to hospital feeling very "wrong", feeling spaced out, shaky, and as if I were speeding. They wrote it off as a panic attack and sent me home, dejected and feeling unattended to.

I went back to my family doctor and pleaded with her. It was at this time my tremor began to manifest every night. For March through May it happened every single night, and most mornings upon waking. A sensation of my body pulsing, from head to toe, most significantly at my breastbone, in my shoulders and neck, though when they are strong I do feel it in my feet and hands. I am in the process of testing with a Cardiologist, have seen my OBGYN who reported all my tests came back in good health, and am still waiting to be scheduled to see the Neurologist.

I would have patiently kept waiting, but this morning I was awoken to the most violent tremor yet - I felt as though my body was convulsing, though my husband could not palpibly feel my shaking. I took the day off work, as I was exhausted and shaking quite harshly within my body. And as I lay down for a nap at mid morning I experienced something which I started to experience in my teens, right around the time they put me on Desipramine actually, which I call the internal hum. It starts in my ear drums and sounds like distant pipe organs, with all the notes jammed down, and then gets louder and louder. I've always written it off to exhaustion, and ear problems which I've had my whole life (am prone to infection). But today it was only one ear and it was not just hum, there was a violent crunching sound, rhythmic to my tremor. With each shudder of my body there was a metal on metal type of sensation within my right ear. And as I opened my eyes there was a pusling light which was so unlike my migraine aura before my eyes, yet distant. It was slanted, sideways, like a tube of orangey light.

I feel shaky still, and have noted (as has my husband) that my motor skills seem sluggish right now, the same way they are when I have migraine.

I am trying to think positively and not worry myself sick, however at this time I can't help falling prey to worry, as it seems a diagnosis is nowhere in my immediate future.

I forgot to mention that for the past couple of years I get a random pain in the same spot at the top left hand side of my head, which can only be likened to steel slamming into my skull, downwards, in a thrusting type of sensation. I had it today. I have never tied these things all together.

Having never been the vision of health, I had thought all of these things to be different symptoms of an unhealthy person. But now I am beginning to worry that they all tie together. I have read numerous other forums today, and have seen things like PD mentioned, and quite honestly none of it scares me as much as not knowing.

Is this familiar to anyone? Can anyone suggest an appropriate line of action?

Thank you for reading this,

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Old 06-12-2008, 05:40 PM   #2
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penny96 HB User
Re: Could this be epilepsy?

Hi, Dee I'm not sure if your symptoms are seizures or not. When you feel your body shake to you go unconcious shortly after or are you awake the whole time? If you're still awake, I would say that it's not a seizure. When I have seizures I usually get a rising feeling in my stomach and maybe a twitch in my thumb and shortly after I'm unconsious. It depends sometimes I only get the feeling and nothing else which is a simple partial seizure. I think you won't know for sure what it is until you see a neurologist and have an EEG test. In the meantime good luck


Old 06-13-2008, 05:38 AM   #3
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Join Date: May 2006
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SentenceDoing HB User
Re: Could this be epilepsy?

Hi Dee,
I'm glad you decided to post here.
I get Simple Partial Seizures (I've only had one gran mal, where I lost consciousness), and during the time my medication levels were still being adjusted I used to have very bad days with simple partial seizures, and I remember waking up many times in the mornings or during the night feeling like my body was vibrating or pulsing, but if someone else were to look at me, they wouldn't see it. Though, if I moved and engaged my muscles, you would be able to see my limbs shaking.

Anyway, an EEG would definitely be a step in the right direction to figuring this out. Keep us posted!

ETA: I just read your reply to my response to your thread in the General Health Forum, and you said you weren't sure what an EEG is. It's a test where they stick electrodes to your head with this sticky gel stuff, and measure your brain waves. They measure for a time just in a quiet room, and then they have you breathe really fast for a short period of time, and then they flash a strobe light at you while your eyes are closed, and through all of this, they measure your brain waves to see if they are irregular at all.

And the thing with the ringing in your ears does sound like sleep paralysis. Whenever I get it, I usually get that really loud ringing in my ears while I'm waking up from a dream, and my whole body is vibrating and I can't move and can't breathe well (just shallow breathing). I usually get out of it by using all my strength to try to move my pinky finger. Once I can get it to move, I snap out of it. Then I have to change positions in order to wake myself up fully, because if I stay in the same place and go right back to sleep, it will happen again. Sleep Paralysis is often a symptom of Narcolepsy (which I also think I have and am trying to get my doctor to order a sleep study), but I only get Sleep Paralysis when I'm also going through a few days with seizure activity.

Last edited by SentenceDoing; 06-13-2008 at 05:52 AM.

Old 06-17-2008, 04:21 PM   #4
Join Date: Jun 2008
Location: Toronto
Posts: 5
Dbird72 HB User
Re: Could this be epilepsy?

Thank you both so much. I am still waiting on the Neurologist, but will keep you updated. Yes I seem to have "cycles" too, I can go a week or two without tremor, then have a period of a few days or weeks where I am tremoring every night, and sometimes through the day very very slightly.

I get foggy moments during the day, more increasing during cycles of tremor, where I feel as though something has been unplugged in my mind, for lack of a better analogy. Like I skip a beat, take off on a daydream to nowhere, and then realize I'm a bit dizzy and light headed.

I don't know what this is, but I don't feel frightened right now. I just want to know what it is so I can move on with a solution.

Thanks again,

Old 06-18-2008, 08:57 PM   #5
Join Date: Jun 2008
Location: Toronto
Posts: 5
Dbird72 HB User
Re: Could this be epilepsy?

Well, as luck would have it, I ended up in ER again today with tremor, aura, motor function loss. And after some blood work and an Adavan (they still want to assume it is anxiety every time) the doctor admitted it seemed I was having a Simple Partial Seizure.

So instead of waiting until Fall for the specialist, I have an appointment next Wednesday with a Neurologist.

Just wanted to update you, and thank you again for your involvement in my thread, and interest in my symptoms.

My head really hurts today. I came home and slept for 4 hours after I had "calmed" down physically. And my head is feeling bruised as it would after migraine. Is that normal? Does this mean that every time I've had the tremor in the last year and a half, that it was actually a partial seizure?

So much to learn, to understand. I guess I best let them diagnose me before I run off assuming lol.


Old 06-23-2008, 07:43 AM   #6
Senior Veteran
Join Date: May 2006
Posts: 733
SentenceDoing HB User
Re: Could this be epilepsy?

Originally Posted by Dbird72 View Post
Yes I seem to have "cycles" too, I can go a week or two without tremor, then have a period of a few days or weeks where I am tremoring every night, and sometimes through the day very very slightly.
Hello again,
Do you notice that your spells seem to be related to your homones? There is a thing called Catamenial Epilepsy, where the seizures correspond to hormone fluctuations in females. Some doctors don't recognize this for some reason, but some do, and it's definitely a real thing because many women have seizures that correspond to their monthly cycles. I always get a couple of days of seizures in the middle of ther month during ovulation, and then a couple of days before or after my period starts. So pay attentiuon and see if the "cycles" you go through with your tremors correspond to your monthly cycle.

and a headache is a common thing after seizures for many people. Luckily, I don't get headaches after my seizures, but I get VERY tired when I have a few days in a row of lots of seizures.

Good luck at your neurologist appointment and let us know how it goes!

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