Please help me! Should I go to the doctor?

[KatieM]

I’m hoping someone can help me here before I go to the doctors and waste my money.

Since the very beginning of my childhood, I’ve suffered from involuntary movements. It is not a common occurrence—if it happens once a week, it’s highly unusual. I can feel them coming on. When they do come on, my entire body contracts; it’s not just a single limb. It’s almost like a tourettes syndrome movement, although I don’t make any noise. I don’t lose consciousness and it only lasts for one contraction. Nonetheless, it is very embarrassing. It’s happened a few times in public. People have noticed in the past, but never really said anything. It normally happens when I am sitting down.

I’ve never really sought any medical help for it because it never hurt me in any way. It’s just something I learned to accept as something that happens, and my parents have generally ignored it. However, I’ve recently been diagnosed with REM Behavior Disorder. I am extremely violent when I sleep and act out my dreams, which are apparently very interesting. I’m so violent that I will actually wake up with “mystery” bruises that I received during the night. I’m not on medicine for this because I’m not married and do not share a bed, and have found it is something I can live with.

When I was researching these “involuntary” movements I came across epilepsy. (I once described my symptoms to a neurologist at a camp, and she mentioned it, but I never really went anywhere with it because my parents thought it was silly). Apparently REM sleep disorder has been linked to epilepsy. Obviously I don’t have the full scale seizures that epilepsy is known for, so I was extremely skeptical. However, I did come across something called “absent seizures.”

If I indeed did have “absent seizures” this would explain many things to me. I’ve always been famous for my daydreaming—at least that’s what people have called it. There are times when I will completely zone out for twenty or so seconds and not hear a word someone is saying to me—they don’t even get I’m daydreaming, because I’m looking right at them, but I would jokingly say, “Oh, I didn’t hear what you just said” or something to that effect. I never really noticed how severe it was until now, because I recently started my first job. I’ve “woken” up several times to people yelling at me, assuming I can’t hear them or have my ipod in my ears. I’ve assumed it is just something wrong with me, or that I am lost in thought, but I really can’t say I remember what I was thinking.

My overall question is if I should go to the doctor or not. I don’t want to go there for them to send me away with a “Oh, you are fine, eat some bananas” answer, so I really would like your opinions if I should go or not. The money is coming out of my own pocket. I’m not certain if these random movements are common or not. If they are common, I don’t think I should go just for the daydreaming-like state I fall into, because I am quitting my job, and while at times this has happened during school, it has never affected me academically. They are extremely short-lived. However, if these are all symptoms of epilepsy, I should probably go.

[Bernard]

Hi Katie, welcome to the forum.

... I’ve suffered from involuntary movements ... I can feel them coming on. When they do come on, my entire body contracts; it’s not just a single limb. ... I don’t lose consciousness and it only lasts for one contraction.

Sounds like some sort of myoclonic seizure, though I'm not sure I've ever heard of anyone having an aura alerting them that one is imminent. One thing you have to understand about epilepsy is that it is a loose term. It's not a bunch of round pegs that all fit nicely into pre-drilled holes on the board. The brain is a pretty complex organ which scientists/doctors don't completely understand yet.

... I am extremely violent when I sleep and act out my dreams, which are apparently very interesting. I’m so violent that I will actually wake up with “mystery” bruises that I received during the night.

Sounds like you might possibly be experiencing nocturnal tonic clonic seizures.

... Apparently REM sleep disorder has been linked to epilepsy. ...

Do you mean sleep apnea?

... There are times when I will completely zone out for twenty or so seconds and not hear a word someone is saying to me—they don’t even get I’m daydreaming, because I’m looking right at them, but I would jokingly say, “Oh, I didn’t hear what you just said” or something to that effect. ...

That sounds more like a complex partial seizure than an absence seizure. Absence seizures are much shorter - rarely more than a second in duration - and do not include automatisms (such as talking or continuing whatever you are doing on auto-pilot).

My overall question is if I should go to the doctor or not.

I think you should. If you are experiencing seizures and don't get them under control, you run the risk of kindling. The seizure activity can get progressively worse.

They should be able to do an EEG (or an overnight video EEG would be better) to figure out if you are experiencing seizure activity in the brain.

[Meetz1064]

I’m hoping someone can help me here before I go to the doctors and waste my money.

Since the very beginning of my childhood, I’ve suffered from involuntary movements. It is not a common occurrence—if it happens once a week, it’s highly unusual. I can feel them coming on. When they do come on, my entire body contracts; it’s not just a single limb. It’s almost like a tourettes syndrome movement, although I don’t make any noise. I don’t lose consciousness and it only lasts for one contraction. Nonetheless, it is very embarrassing. It’s happened a few times in public. People have noticed in the past, but never really said anything. It normally happens when I am sitting down.

I’ve never really sought any medical help for it because it never hurt me in any way. It’s just something I learned to accept as something that happens, and my parents have generally ignored it. However, I’ve recently been diagnosed with REM Behavior Disorder. I am extremely violent when I sleep and act out my dreams, which are apparently very interesting. I’m so violent that I will actually wake up with “mystery” bruises that I received during the night. I’m not on medicine for this because I’m not married and do not share a bed, and have found it is something I can live with.

When I was researching these “involuntary” movements I came across epilepsy. (I once described my symptoms to a neurologist at a camp, and she mentioned it, but I never really went anywhere with it because my parents thought it was silly). Apparently REM sleep disorder has been linked to epilepsy. Obviously I don’t have the full scale seizures that epilepsy is known for, so I was extremely skeptical. However, I did come across something called “absent seizures.”

If I indeed did have “absent seizures” this would explain many things to me. I’ve always been famous for my daydreaming—at least that’s what people have called it. There are times when I will completely zone out for twenty or so seconds and not hear a word someone is saying to me—they don’t even get I’m daydreaming, because I’m looking right at them, but I would jokingly say, “Oh, I didn’t hear what you just said” or something to that effect. I never really noticed how severe it was until now, because I recently started my first job. I’ve “woken” up several times to people yelling at me, assuming I can’t hear them or have my ipod in my ears. I’ve assumed it is just something wrong with me, or that I am lost in thought, but I really can’t say I remember what I was thinking.

My overall question is if I should go to the doctor or not. I don’t want to go there for them to send me away with a “Oh, you are fine, eat some bananas” answer, so I really would like your opinions if I should go or not. The money is coming out of my own pocket. I’m not certain if these random movements are common or not. If they are common, I don’t think I should go just for the daydreaming-like state I fall into, because I am quitting my job, and while at times this has happened during school, it has never affected me academically. They are extremely short-lived. However, if these are all symptoms of epilepsy, I should probably go.

YES, you need to go see a neurologist. The sooner, the better. Check out this thread. Epilepsy 101 - Part FAQ, Part tips and advice It will give you a lot more information, too. It is also possible that the involuntary movements that you speak of are something called myoclonic seizures.

When you go, they will start out doing a history of course, an MRI and an EEG, probably some bloodwork. Try to get at least a 24 hour EEG so that they have a better chance of capturing these movements.

Also, start a journal. How much did you sleep? When did you go to bed? What did you eat? How much, and when? How about video games? TV? Computer time? Write it ALL down. OK, it's a pain in the arse, but it will help you find a trigger, eventually. Oh, and write down your cycle times too. It could be tied into that......

Like I said, go check out the Epilepsy 101 thread.

Good luck! And welcome to CWE!!! This is a really cool place!

[speber]

ditto to all the above.

But I wanted to reassure you best I could that your 'affliction' may be able to be controlled (possibly) by many different things so don't get too discouraged!

There are classic anti-epileptic drug's...but there are alternative therapies as well.

Do searches in this forum or use the tag cloud and you can find ALOT on the subject!......maybe something will help you out!

Peace and good luck!
Speber

[RobinN]

Katie - Welcome
I would suggest you begin your search for control of these episodes. I believe in the idea of kindling. I think this occurred with my daughter. However, we tried the anti-epileptic drugs and found they caused more seizures and I believe began the route to kindling.

My daughter is on alternative therapies that include nutritional changes (no not bananas), vitamin supplements that support brain health, natural bio-identical progesterone (her seizures are triggered by hormones or lack of), and neurofeedback that is helping to stabalize her brain function.

There is help to be found, but unfortunately you have to be the detective. A doctor doing this type of work (if you could find one) would be very, very expensive.

[Georgiagirl88]

Hi and welcome!! I would see a neurologist. Mine were never your 'typical " jerking pattern exactly and therefore I was misdiagnosed by regular Drs. for yrs. I also get auras prior to seizures and can feel them coming..I will then have one in my sleep that evening and they wake me up. The daytime auras are weird. I get jittery, tingly, dizzy,weak headache and overall feeling unwell.
I just think it is something I would look into with a neurologist. Best of luck!!

Michelle