What the heck was that?
 

Hi Gang,

I had a weird experience last night and I’m wondering if it’s the product of my TBI.

I was sitting at dinner with my family and it suddenly felt like they were far away. I could see, hear and understand them, but I couldn’t will myself to move or say anything. I’d say it lasted a good ninety seconds. They didn’t notice so there was no intervention.

I had absence seizure early on, but with those I just lost all awareness of my surroundings until I snapped back on. This was more like the way you feel before you faint, but I wasn’t nauseous or anything. I did feel a bit dizzy though and have noticed more dizziness of late. At best, I think I would describe what happened as an out of body experience.

Things are more complicated for me because, in addition to the diffuse axonal injury, I also have spinal cord damage and it can be hard to know which problem is triggering which symptom. I will faint if I turn my head too far or too fast, but I was wearing a cervical collar at the time.

Any idea what might be up?

Thanks

sorry you have this on top
 

hi hockey sorry you have this on top of every thing, don,t know mate but try to keep a note of if and when it happens and tell your docs about it, the neck condition and fainting could have something to do with it, kind of like hypoxia on set symptoms
best wishes

This is an idea...

I just started study medicin here in Sweden and I came across a case were the patient had short "blackouts" were he felt gone for a while and then came back, as if he fell asleep a short while. I dont know if he ever had any neurological trauma or deficiensy. But after a LOT of testing, they came to the conclusion that something was wrong with his vestibular system. He also had high blood-pressure btw which might have interacted with this problem.
The measurements showed that the bloodsupply to his brain almost stopped for a while which caused him these blackouts. Nothing dangerous, except for what injuries can be caused by getting a blackout while walking, driving etc.

I cant give you an answer other than it sounds like what you experienced. An injured brain also normally have a less accurate vestibular-control and also yhe brain itself is more sensitive to changes in bloodpressure, o2 supply etc!

This is possible explination.

Did you sit in a static way for a long time before this happened?

My braininjury has sometimes caused me to feel dizzyness just like a low bloodpressure in situations were I have been in a static position with my head/neck or if I get up after sitting down etc.

Emil

I have experienced the same thing as hockey. It is very strange. It is like a combination of an anxiety attack and absence seizure. i have never found any information about it.

It also is similar to the tunnel vision that happens as you start to black out from the high G forces of a roller coaster loop. It may be a blood flow issue. Or, it could be related to holding one's breath.

Since the senses shut off in a series , not in parallel, when oxygen to the brain is reduced, the blood flow or breathing makes the most sense.

Coincidentally, this morning, I just had 8 vials of blood drawn for some hormone and other blood work. I passed out cold after undergoing the same symptoms.

As mentioned before, journal all of the factors before and after this episode.

And be very careful if you need to drive.

Weird! I'm sorry I don't have any ideas about what happened, but definitely keep me posted.

Hockey

It sounds very much like another kind of seizure or even just experience with not being able to talk to folks for a short time period. Hard to explain. There is a form of seizures called simple partial that I think it might be considered.

But I like the person who suggested vestibular issues too. I have these, and when they return I can do some of the things you do. But usually can talk.

Donna

Good ideas
 

Thanks Gang,

Yeah, I was leaning toward a blood flow or seizure issue. (SIGH) I'm already on the maximum dose of seizure meds.

It seemed so strange to have awareness, but no will to act. I was a pretty sraightlaced kid, so I don't have any experience with being stoned. However, I was wondering if this could be related to my meds.

There's always the chance I overdosed as I have trouble remembering whether or not I've taken my pills. I have a chart, but can forget to mark it. Today I bought a weekly pill dispenser and my husband is going fill it.

I'll report this to my neurologist, but frankly, he's an idiot. (And sadly, he's the only idiot within four hours of my house.)

Thanks for taking the time to help me puzzle this out.

Hockey

Another idea if it was a seizure. It can easily be that you were just at a time of needing to have one. Or a brainoverflow. Does that make sense.

So don't go so much thinking that you took to much, or that its you need more meds. But you can think that you already take to much meds.

My son has at times taken to much medication. And when I finally talked the doctor into reducing one of the medications we lowered his seizures.
And I have found that when we made a mistake this summer with his
new medication, he got the dosage wrong. And took way to much.

that he started having more seizures. But it got corrected, and after a while luckily the seizures got back under control. But he was at the new 2nd neurologist yesterday, and the VNS was changedl. I have to say, weird,
had a doctor state he was having more seizures and changed his settings.

Donna

Too much meds?
 

Thanks Donna,

My dose is sky high because they're also using the seizure meds to control the terrible nerve pain and spasms from my spinal cord injury. After reading your post, I can see how this might be a less than ideal situation.

Cheers

Could be Depersonalization
 

Does anyone think it could be an acute form of Depersonalization or Derealization? I have read and heard that people who depersonalize are able to see their on bodies, as if they were floating above them. Depersonalization is very common among people with head injuries. However, people without head injuries can also depersonalize from a traumatic event or drug use-especially from smoking too much marijuana.

Yuck
 

I saw the doctor today and he said I have all the classic symptoms, including preceeding aura, of simple partial seizures. I guess I shouldn't be surprised since people with my head injury are at a high statistical risk for this problem. Still it's a blow.

I won't be able to drive until this gets ironed out. That's a bit of a disaster as we live in the sticks and now my kid won't be able to get to a lot of her activities. I feel so bad for her. However, unlike the drunk driver who ruined my life, I'd never dream of putting others at risk.

Has your doc tried any different seizure meds? Different people respond differently to meds.

Also, have you had your hormones checked? Neurotransmitters and hormones are inextricably linked. A minor hormone malfunction may cause a major neurological dysfunction.

Do some googling about bio-identical hormones and brain injury. As I said before, progesterone is a neuro-protective.

Fight to get a doctor to listen to you about your hormone concerns. Do the research and take it to the doctor with you.

I'm sorry! It's so tough to make the call to drive or not. I haven't been able to drive since the end of July. It is so frustrating to feel so limited! You make a good point though about it not being responsible. I would hate to cause someone else the same problems that I am having now. My husband is great about carting me around for the most part. I hope you have friends and family that you can rely on for things.

I think I know the feeling youre talking about hockey. I just have a question when is happens do you see yourself like they say happens in an out of body experience or do you just have no will to respond?

Hey Soccer,

It wasn't like I was floating above looking down at myself. I knew I was sitting at the table, but everyone seemed far away and I just couldn't seem to move or speak. I was aware of what everyone was saying and doing. It was different from the absence seizures I had right after my injury. If somebody left the room when I was having one of those, when I snapped back in it was like they'd vanished suddenly into thin air. :BeamUp:

The only positive is that, unlike the absence seizures, I get warning signals (I've had a few more now) that a simple partial one is coming.

Ok this is the exact thing that happens to me all the time. This answers my question I'm not having any absence seizures which is good. But this happens to me many times a day usually at school. So they are seizures when that happens?

Soccer

You definately could be having simple or complex partial seizures. The difference between these two particular kind of seizures are that you know you had a seizure in a simple like Hockey's or probably yours. In a complex you are acting, doing and usually being yourself but just don't know what is happening. About 30 seconds to 2 minutes or longer you return.

And it is like you have to find out what you missed. Its really hard at times to know which kind you have.

I would talk to your neuro about this. I think its safe to ask if you could maybe try one of the medicines that are know for helping headaches and seizures.

Donna

To Everyone

My youngest son Derrick who is 18 and a senior in High School at the present time. Knows exactly what it means to not be able to drive. He has epilepsy,
and wont be able to drive probably ever. Luckily for me he has accepted this.

My husband has had a hard time accepting the fact that he wont be able to drive. He wants to break this rule teach him to drive a riding mower and do things that are dangerous for him. I work through this with him all the time.

But I also know that my son has a level head and will do what is right. We live in a small town. And to get the job he dreams of working with dogs.
That is probably being a groomer of some sort. Its going to take some driving.

And its going to probably be volunteer. SO hopefully his SSI will come through. But you can do anything if you dream long enough.

donna

Thanks donna I just have a few questions on them. What would they do if i was really having the simple? How do they test to see if you have it? Can you still drive if you get them?

Soccer

They would ask you lots of questions, and your family about things going on that they see. I can suggest for one thing you go to the Epilepsy Foundation of America's site and read up on Simple Partial seizures.

Now I would also suggest that you ask for a EEG and its going to be a sleep deprived one. So that they can get the best reading. If there is activity or a seizure during it this is the best. But the most usual thing they see is for a EEG to be normal, or to have a small amount of activity.

Which is the best, but I would ask for one. They will also do a MRI to double
check things. If you have already had one. THis might not be necessary.

Now I wouldn't worry about if you are going to be able to drive yet. They have to get the seizures under control first. And with a early diagnosis and
the fact that they can control seizures with usually the first or second medication. Then you should be able to drive soon. But most states its 6 months after your seizure free.

I have a second son, who is now 23 who spent 6 to 9 months not driving.
Just after he was 18. He was driving when he shouldn't have been. He finally told me about the blacking out spells when he was driving down the road, and ending up in a ditch. Thankfully he didn't hurt anyone. But he had
been having lots of small fender benders that didn't make sense right before then. And as it turned out. After calling the neuro working on the headaches. He put him on depakote ER immediately. Because its known to work on both migraine headaches, and seizures. And it was very much a good thing for Devin.

He is my son that had dropped out of school at 18 and went back at 19 or 20 I can't remember which to finish his senior year. He is also the one that loved
high school soccer but was sick with migraines missing it too.

Donna

Thanks for all the infor donna. I have already had an EEG done a few months ago that came back normal (it was a sleep deprived one). But I think if i am having seizures just recently started so i dont know if it would be necessary to do one again. I have also had a CT scan which came back normal. Another thing is i dont know if my family has noticed them at all becuase they seem to happen mostly at school. Is there any other way they could diagnose it if these two wouldnt work?

Soccer

Just your complete explanation of what is going on would be a good start.
Also the fact that they seem to be happening mainly or only in schools is honestly a good start. It could be lots of things that are part of the school.

So you need to get to the neuro with this information, so he can help you get through letting the school know how to help you watch for them. And when they happen what you need to let the school know.

But I do also want you to know that lots of times its hard for schools and others to realize its really happening. So just take it as part of a I need you to know this is going on.

Donna

Thanks again. what would they do if i were having them during school? How would they know? What would they do if i were having them?

soccer,

I would suggests talking with the people you come in contact with the most. Ask them if they ever see you 'disconnect.' My teachers would complain that I was daydreaming.

If others around you know what to watch for, they may be a big help. My wife says I get a stern grimace on my face. Other times, she says I look spacey or disconnected, like I am staring right through things.

I used to become aware of losing focus on my surroundings. I would find myself looking at things that I had no reason to look at, i.e. baby food at the grocery store, my kids are all grown.

The normal EEG will be just a shot in the dark unless you can get help in understanding any triggers. A QEEG/brain map by a specialist who understands the technology could help point in the right direction.

Check out
http://www.childrenshospital.org/az/...geS1509P0.html

Soccer,

If you are interested in getting a QEEG done, let me know what area you live in and I'll find a specialist for you. I am a member of a yahoo group that includes neurofeedback/QEEG specialists from around the world.

hi hoc
 

hi hoc Depersonalization is common a feeling, I get alot
try to reduce the meds with your docs support!!! if you can.

I have trouble remembering, to take meds and I don,t know if it was yesterday or this morning if you know what I mean . but I have developed a work around of shaving half my face then taking my meds then shaving the other half ergo if I haven't shaved I haven't taken my pills , now I am not suggesting you take up shaving my dear , but these qirky little work rounds can and do help . I have not yet found I have a half shaved face then I guess? I would have a problem :confused:

What do they do during a QEEG? Im not sure if i am having them or not I havent been back to the doctor since i found out about simple partial seizures so Ill have to ask next time I go in. They may just want to put me on some medicine or something but Im not really sure. What do they do during a QEEG?

Simply put, A QEEG is a completely non invasive procedure that measures your brainwave activity. It is very similar to getting an EEG done, but more detailed. Essentially, you put on a cap that contains around 50 electrodes. The person administering the QEEG will record a baseline and then ask you to perform some simple tasks such as reading, math calculations and meditating. The QEEG records your brainwave activity during these activities. The whole process takes about an hour.

When finished, the administrator will then process the information. Your brain wave activity will be measured for frequency domination, frequency deficiencies, coherence and phase. The last two are basically measuring how well the different areas of your brain are communicating.

The QEEG is probably one of the most sensitive brain scans you can get, which is often required for brain injuries. BTW, two other brain scans you can get that are as sensitive as the QEEG are the SPECT scan and fMRI.

The main reason why people get QEEG's done is because they are going to undertake some form of neurofeedback therapy. In this case, the QEEG is used as a guideline and road map for the therapist. It is also sometimes used in legal matters, but not often.

It's a 50/50 shot to get your insurance company to pay for it, and the average test costs around $800. Because of that, if you aren't planning on doing anything with it, i.e. therapy or for legal matters, I wouldn't recommend doing it.

More information on it can be found here: http://www.qeeg.com/qeegfact.html

Thanks so much for all the info. I dont know if I would need therapy or not but ill ask about it next time i go to the doctor. I have a neuro psych test on the 29 and then ill go back after that. Ill ask about it thansk for all the help. :)

There is also a more clinical form of QEEG. They use a cap with 18 to 26 electrodes. More than that is rarely used except in research. A normal EEG is 14 electrodes.

They have you perform a few functions and watch a TV monitor with timed visual stimulation. Head phones will have timed auditory stimulation. There will be eyes opened and eyes closed segments. This information is then compared to a database of research subjects. There are a number of databases used. New York University has one, Robert Thatcher has one. Lexicor has one. There is another one that is commonly licensed to neurotherapists. I do not remember it name. Many focus on ADD/ADHD with a smaller application to PCS/MTBI.

This would be more completely called an QEEG/VEP/AEP. Quantified Electro Encephalo Gragh / Visual Evoked Potentials / Auditory Evoked Potentials

It measures the processing of the stimuli from the visual or auditory stimulus.

The QEEG/AEP/VEP is a great diagnostic tool except is had been given a bad reputation by a report in a Neurology Journal some years back.

It can help find the malfunctions, especially the parts of the brain effected.

Since its use is very loosely regulated, one should do some research into the practitioner. BCIA credentials are helpful. The oversight of an M.D, is best.

It greatest value for me was to have a M.D. tell me what my brain was doing without knowing my personal symptoms. I finally knew I was not crazy. His diagnosis fit with the neuro-psych assessment I had had, except, he could tell that my symptoms were organic and not psychological.

Neuro-psych assessments can tend to point toward psychological causation. It depends on the biases of the examiner. Since they are usually neuro-psych Ph.D.s or Psych.D.s this problem is common.

Why do the do a QEEG for?

A QEEG can be done for a number reasons. The two that are most relevant to anyone suffering from PCS are:

1. for legal reasons - i.e. to win a lawsuit or to get SSDI. In both of these
cases, you are objectively proving abnormalities in your EEG.

2. for neurofeedback therapy - it serves as a roadmap, or guide, for the
trainer

In my humble opinion, I wouldn't get one unless you are going to use it because they are pretty expensive to get and insurance usually won't cover the costs. However, if you have the money, it may be nice just to have an objective test validate how you are feeling.

FYI: There are two other tests are just as sensitive and valid as the QEEG and more insurance companies are starting to pay for. However, you will still have to pay for about 20-30%, which amounts to about $1000. These are the fMRI and SPECT scan. Again, IMHO, to get one won't really do a whole lot for you unless you are planning on using it for therapy or legal reasons.

Thaknks if your EEG came back normal is it really necessary to do a QEEG will it make any difference?

Yes it is. A QEEG is much more sensitive than an EEG.

Why dont most insurance companies cover it?

Not exactly sure why, but it was somehow incorrectly discredited by a psychiatrist a few years back. Mark knows the complete story. However, some insurance companies will pay for it, so check with yours to see if they will.

Yea thanks i probably wont need to get one. I guess well just see how the neuro psych test goes and then go from there. Thanks :)

Insurance companies often do not cover QEEG's for two reasons.

The neuro-therapy crowd has overplayed the usefulness of the QEEG by using it to diagnose conditions. It has not been approved by the FDA as a diagnostic tool in the hands of a non-MD. Many therapists have also claimed it as a treatment outside the approval of the FDA. Lexicor, one of the first to try to commercialize the QEEG, sold many systems and diagnostic services using it. Many therapists with only a BA/BS or MS degree in counseling made improper claims. Thus the FDA shut down or restricted a good part of the industry.

Also, back in 1997, a neurologist, writing in the Journal of Neurology, wrote a scathing negative review of the validity of the QEEG. This was widely published and used by defendants' attorneys to muddy the waters. There have been numerous responses to the unscientific method of analysis used by the discrediting author showing how erroneous his article was. None the less, it has been a long road to get the QEEG to be accepted as valid.

The many statements that continue to be made about using a QEEG for neuro-therapy that go far beyond any scientific basis has kept the waters muddy.

It continues to be sold as a device to direct a patient in patient controlled neuro-feedback. In this situation, the patient is making all of the efforts to change the specific waveform.

The passive patient systems (LENS, ROSHI, and similar systems) have been sold as relaxation devices but have been used to treat head injuries by electronically stimulating the brain with lights or electro-magnetic pulses. In these systems, the patient does nothing and lets the system impact the brain with the various stimuli.

This attempt to circumvent the FDA approval process has also muddied the waters. Again, it has been the overstated claims that have caused the problem. If the practitioners would not make such inappropriate commercial claims, they would probably still be allowed to continue therapy without FDA interference.

Simply put, the claims of fact are only based on anecdotal evidence. If they were based on proper clinical trials and statistics, the FDA may approve them as valid and factual claims

There are databases that have been validated for use as diagnostic references with the QEEG. Most practitioners are still not using them, most likely due to cost.

oh ok that makes sense. how much do they cost?

Hi Hockey

This happened to me once when I was on a cruise with my late wife the summer before she died. We were sitting at dinner, and I didn't notice anything, but suddenly this doctor sitting to my right stated that he was sure that I had just had a petit mal seizure.

I used to take Neurontin for burning nerve pain (from arm injuries and JRA) but it has a side effect of severe edema. I still take it if the burning nerve pain flares up. NSAIDS and narcotics don't touch this pain, but neurontin does. Is that what you're taking? It was originally for seizures....

make sure as the others said to keep a journal of these for your doctor

blessings

gershonb