The begining... I think?

[Bubbles]

I need some help. I am not certain if I have epilepsy, but I have had many seizures these last few months. The dorctors I have seen have not been very helpful in bringing clarity or understanding... So here it is. Here is what happend.

This june I collapsed in class. It began with what I thought at the time was a panic attack. It was the worst feeling in the world that came over me in those minutes. My friends tell me that I was moving uncontrolably, but to me it didn't seem that way. I was unresponsive and sent to the ER. But I never lost awareness.

At the hospital I was given Ativan. I became emotional, paranoid, anxious, started hallucinating, and basically do not remember my three days there. They did an MRI - I remember having a seizure in the machine, and then nothing. They did an EEG, didn't explain about the strobe light and my drugged up brain started panicking as such things tend to trigger migraines. This EEG was video taped and the drs all thought it was a seizure. Since it didn't register, they thought it wasn't epilepsy. Only, it wasn't a seizure. I was physcally trying to get away from the light but was too out of it to understand I couldn't actually run while lying down. And at the time, I was unable to explain this to anyone.

I was having attacks every few hours, even with the Ativan (I think this made it worse) and was still having them when the hospital released me. They did not say what conditions should bring me back. I continued to have seizures that night, and remember friends pinning down my legs.

Now, where I loose most drs, is that the seizures are not the only thing wrong with me. I also have gait issues; I walk weird, and have for a few months. I have terrable balance, and run out of energy quickly. I 'tic' a lot, and have on and off for years. I stutter, have thought issues and poor cordination. I think, possibly, that I might have MS or some such thing, and was seeking a diagnosis for this before the seizure happened in june.

However, after reaserch I have begun to wonder if perhaps I have temperal lobe epilepsy. I think that I have had small seizures since childhood. These might have remained unnoticed until this summer. However, whenever a dr asks if ive ever had incontinence due to a seizure (no) they tend to take me less seriously? I don't know how big a deal this is with epilepsy?

Most of the time, I am not even certain if what I am experiancing is a seizure. Sometimes they resemble a stroke; My face goes slack, and I cant move or speak for a period of time. I often have double vison. I have trouble standing upright on my own.

The strangest one is when all of my mucles cramp up, my mind becomes very foggy and it is hard to think. Sometimes I can't even inhale when this happens. My hands will become like claws, and my body will contort. I really don't know how to quantify those events, and would love to know if anyone else here has ever experianced anything like it.

We do think that I have had tonic-clonic seizures, along with partials. But again, we don't know what is going on. All I know is that after reading about Temperal lobe epilepsy, it sounds a lot like me (I'm not going to get into that right now, but just know deja'vu and weird momentary things like that have followed me all my life).

I am still having seizures, I think about 1-3 times a week, and haven't been put on any drug that would normally be used to treat epilepsy. I would love to know if anything that I have said sounds familair to those of you around here.

 

[resaebiunne]

What did the EEG results say? Lack of incontinence is not a sign that you do not have epilepsy. I've had full tonic-clonic seizures and not lost bladder control, quite the opposite in fact.

The strobe light used during an EEG is for photic stimulation. The light pulses at specific intervals of time to attempt to trigger seizures.

It's possible that your lack of awareness during your stay at the ER was more a side effect of the Ativan than the seizure itself. It's hard to say from what you describe. There are many types of seizures with varying levels of consciousness. ER stays are typically not very helpful, as I have experienced many times. The neurologists are lackluster and they don't know your medical history (but in this case you don't have one anyway).

I recommend you start with a good epileptologist or at least a neurologist. An epileptologist is a neurologist who specializes in epilepsy. They will perform an EEG to properly diagnose you. On top of that, if you think you are having panic attacks, tics and stuttering issues and that they were not related to the Ativan, you should see a psychiatrist. I think this will help you a lot. The ER can only do so much. I'm surprised they didn't give you any referrals. Depending on what insurance you have, you may need a referral to setup these appointments so be sure to ask when you have a chance.

 

[Porkette]

Hi Bubbles,
Welcome to CWE! resaebiunne gave you some good info. start seeing an Epileptologist they can help you and find out for sure if you have epilepsy and if you have MS. I have family that had MS and often it can trigger seizures. You mentioned that you had poor balance that happens to me also I can't even walk a straight line heel to toe and it's been like that since I got epilepsy. It also sounds like you may be photosensitive which means certain colors or flashing lights can trigger seizures for you. I have the same problem but after I had surgery to reduce my seizures that problem stopped.
Have you ever noticed being in one place and then blanking out and when you come around you find yourself in a different location? If you did that could be a complex partial seizure and sometimes before I have one of those I will be sitting in the living room but then everything looks unfamiliar to me and I'm not sure where I'm at. I've learned to just concentrate and tell myself where I'm at and the feeling goes away.
I've had temporal lobe epilepsy for 45 yrs. and it's on the right side. If you notice yourself being more emotional that could be a sign of temporal lobe epilepsy but since you have a hard time speaking at times it may be the left side of your brain do to the fact that's where a persons speech is. You need to have more testing done and get a video e.e.g. done so the Drs. can see what's going on. In the meantime keep track off all your seizures and write down on a calendar what time they happened and the type of seizure you had. I wish you the best of luck and May God Bless You!

Sue

 

[Bubbles]

I am a little bit confused why 'panic attacks, tics and stuttering issues' would be a reason to see a psychiatrist? I think the first panic attack might have had to do with the 'feeling of doom' so often associated with seizures. I am not positive though. I do get such feelings, and often know beforehand that a seizure will be bad. But this particular one was the worst.

The EEG in the hospital was negative. (But again, what happened didn't feel the same as the seizures I have experienced. This is the main reason why I don't believe it was one. I was hallucinating so much by then that the world around me was fairly frightening).

As for the stuttering- it always seems to happen around the migraines and seizures. It has to do with how clearly I can think and form words, and sometimes words just get stuck. This is very new, within the last year, but always happened around a migraine before the seizures.

The tics- I have no idea about those. Several doctors have suggested that I might have everything from turrets to huntington's. I also could have a form of dystonia?

I have been seeing a neurologist. He did an MRI of his own, and an EEG. The MRI showed that I have a cyst in my sinuses? I have no knowledge about what this means, though. And then the only thing his EEG showed was a possible heart arrhythmia. So I am getting that checked out.

I've been Pre-syncope since I was 16/17, but I don't know how that might be related to epilepsy?

The thing is, I do not like the neurologist I saw, as he doesn't communicate very well. And because I have bad insurance, I cannot simply switch. He is focusing on my migraines at the moment, instead of everything else. And the last time I saw him, he didn't actually look at me until he left the room.

What is the difference between a neurologist and an Epileptologist? I have never heard of such a thing before.

And yes- twice flashing, bright colors have caused seizures. But they were multicolored things on tv, not the white light of the EEG. I don't know if that makes a difference. All my life I have hated flashing lights. They make me very tired and give me migraines.

As far as I know, I have never blanked out and moved from one place to another, but I have a very poor memory. Back in December I got lost on the way home (I was walking) and didn't recognize anything around me for up to a minute. It was a straight line home, and I'd been walking it for months. But in that moment, I was positive I'd never been there before.

I had been keeping track of the seizures, but I am not longer sure what counts. Such as today. I woke up hardly able to move, and extremely nauseated. Moving makes me so very dizzy, and now I have to sit through a powerpoint. Last night I was having auras in my vision- I've had those since I was small enough to be in a car seat. The thing is, for some time, I have assumed that I would get those because of the migraines. But now, I am extremely confused. Do I feel this way because of the migraine that I am getting, or am I getting this migraine because of a seizure(s) last night?

 

[Nakamova]

What is the difference between a neurologist and an Epileptologist? I have never heard of such a thing before.

An epileptologist is a neuro who specializes in epilepsy. That means they have a lot more experience in evaluating symptoms, recommending treatments, etc. You may have more leeway than you think the see a different neurologist -- don't hesitate to be a bit pushy with either your insurance or your current neuro. Consider bringing a friend or family member to your appointments to act as an advocate. The doctor-patient relationship should be a collaboration between equals, and you should not leave the doctor's office without feeling satisfied with the encounter.

The EEG in the hospital was negative. (But again, what happened didn't feel the same as the seizures I have experienced. This is the main reason why I don't believe it was one. I was hallucinating so much by then that the world around me was fairly frightening).

A negative EEG doesn't rule out epilepsy, or even the possibility that you were having a seizure at the time -- some seizures (especially TL partials) can occur too deep in the brain or are too transient to register on EEG. Of course it is possible that you were having a reaction to the Ativan or there are co-occurring health issues (like the migraine or syncope).

I've been Pre-syncope since I was 16/17, but I don't know how that might be related to epilepsy?

Sometimes cardiac issues can be misdiagnosed for epilepsy and vice versa. And sometimes a heart issues can be co-occurring with a seizure disorder or be a secondary trigger. Check out: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1767616/ (if you don't want to read the whole article here's the summary Paragraph:
"Syncope accompanied by involuntary movements is not uncommon and creates a differential diagnostic problem against seizure disorders with important therapeutic and prognostic implications: the underlying cardiac condition may not receive proper treatment at a considerable mortality risk, bradycardias might be aggravated by some ion channel active antiepileptic drugs, and a diagnosis of epilepsy may lead to significant psychosocial consequences. Possible cardiovascular causes of convulsive syncope include various neurally mediated, vasovagal reactions (including carotid sinus hypersensitivity), bradycardia, and ventricular as well as supraventricular tachycardias. Besides awareness of this possibility, a careful clinical history from the patient and available witnesses, physical examination, ECG, and head-up tilt testing are the most important diagnostic tools in younger patients, while invasive electrophysiological studies with pharmacological stress testing and carotid sinus massage become more important with increasing age; echocardiography and exercise testing are additional important tools in the search for structural heart disease, which when present has the highest prognostic impact."

twice flashing, bright colors have caused seizures. But they were multicolored things on tv, not the white light of the EEG. I don't know if that makes a difference.

The strobes during an EEG can sometimes trigger a particular kind of seizure called an absence seizure, so they can help rule in that particular form of epilepsy. But plenty of people who don't react to the strobes can be triggered by other kinds of flashing lights. It doesn't matter what color the light is. Some people are triggered by dappled light (like bright sun/shade) or flickering lights (like certain fluorescents) or by computer monitors or by movie screens.

 

[valeriedl]

Luckily, if you want to put it that way, I was diagnosed with epilepsy. I know there are many people though who it takes a long time to find out if they do or don't.

I have partial seizures and tonic clonic. Sometimes I might just get confused about what's going on. After these seizures I know everything that happened during them.

Sometimes during a seizure I'll black out and I might just sit there staring. Sometimes part of my face will sag. I could do things like play with something, once I kept trying to put a pillow in a pillow case over my foot. I might talk but what I'm saying doesn't make sense or I'll just keep saying the same word over and over. There are many more things I do during a partial too. Other time's I'll have a tonic clonic and I'll black out and shake. After these I usually don't know I had it and I might have a migraine.

There was a time when I had a seizure, I'm not sure what type though, that I was completely aware of what was going on but I was laying on the ground not able to move and shaking like crazy.

As said try to see if you can get someone who's seen you have things happen. They might be able to answer questions better than you can and tell them about things that happened that you might not realize did.

I love my neuro but every few visits I'd see his nurse practioner. The woman was a real b****! Anytime I'd ask her something or tell her about something that happened her answer was always "If you'd take your medicine then you wouldn't have these problems!" We told her that I take my meds religiously, I even have an alarm set on my cell phone to make sure I take them on time but she just didn't believe me. I finally blew up in the office and told them that if I wasn't going to see my neuro every visit then I was finding a new one. I haven't seen her since.

I was having attacks every few hours, even with the Ativan (I think this made it worse) and was still having them when the hospital released me. They did not say what conditions should bring me back. I continued to have seizures that night, and remember friends pinning down my legs.

Let your friends know that they shouldn't try to hold you down during a seizure. Just make sure that there's nothing around that's going to hurt you if you might hit it.

 

[Bubbles]

Let your friends know that they shouldn't try to hold you down during a seizure. Just make sure that there's nothing around that's going to hurt you if you might hit it.

I am not certain, but I think I actually told them to do this in my drugged up state at the hospital. I like weight (if you know what a weighted blanket is, I had started making myself one just before this) and I also vaugly remember saying something like that to the neurologist....and getting a look from her like I was crazy. The way I was twisting and jerking was making my legs hurt, so I think at some point in time I must have said something about wanting pressure on my legs. And thus, it somehow made that happen. My friends haven't witnessed those kinds of seizures in a while though, so I will try to make sure they know not to pin me down.

 

[Nakamova]

Here's basic info about what to do if someone is having a tonic-clonic:

WHAT HAPPENS IN A TONIC-CLONIC SEIZURE:
The person goes stiff, loses consciousness and then falls to the ground. This is followed by jerking movements. A blue tinge around the mouth is likely (and normal -- this is due to irregular breathing.) Loss of bladder and/or bowel control may happen. After a minute or two the jerking movements should stop and consciousness may slowly return.

DO:
-- Protect the person from injury - (remove harmful objects from nearby)
-- Cushion their head
-- Aid breathing by gently placing them on their side once the seizure has finished
-- Stay with the person until recovery is complete
-- Let the person know what has happened, and reassure them

DON'T:
-- Restrain the person’s movements
-- Put anything in the person’s mouth
-- Try to move them unless they are in danger
-- Give them anything to eat or drink until they are fully recovered
-- Attempt to bring them round

CALL AN AMBULANCE IF:
-- You know it is the person’s first seizure
-- The seizure continues for more than five minutes
-- One tonic-clonic seizure follows another without the person regaining consciousness between seizures
-- The person is injured during the seizure
-- You believe the person needs urgent medical attention

 

[resaebiunne]

I am a little bit confused why 'panic attacks, tics and stuttering issues' would be a reason to see a psychiatrist? I think the first panic attack might have had to do with the 'feeling of doom' so often associated with seizures. I am not positive though. I do get such feelings, and often know beforehand that a seizure will be bad. But this particular one was the worst.

Because these particular conditions fall under the Diagnostic and Statistical Manual of Mental Disorders. However, if you think this was a seizure aura or migraine you need to decide this for yourself first.

 

[Bubbles]

Where do tics fall under mental disorders? I don't think I have come across this before....

The speech issues aren't ever caused by inner or outer issues (like anxiety or stress) as far as I can tell. Though possibly by lack of sleep. And they happen around the migraines and then after a seizure.

But the tics are a little bit more confusing. I was watching a video on myoclonic jerks, and thats what they kind of look like at the moment. Which might be different from how they started? (I have limb, trunk and vocal tics)

And the panic attack only happened those two time times. So I really don't know about that at all. But I do believe that I have anxiety, though I manage it well enough at the moment that it isn't a huge issue most of the time.