Out of body experence

My 21 year old son had an AVM in 2009. To make a long story short, stopped medication a few months after surgery. (Never had a seizure). What seems to be consistent (although inconsistently and unpredicably) is the sensation every few months of “an out of body experience” like “an old song going over and over”. He is aware when this happens to him and it does not last long. He is aware that he s gong through it. He has had MRI’s and CAT Scans but because he did not have them at the same time that the feeling is happening we cannot tell what is happening. His wonderful surgeon had told him that he will need to get a brain angiagram after he is 21… however he moved. Any one have these feelings (Sometimes also comes with a feeling of queaziness). Does anyone have suggestions for a good neurologist and surgeon and hospital in NY, LI or Queens? I want him to join but “has no time” and wtih his mom on …well what can I say?

Hi Fortunado,

These sound like seizures to me. An out of body experience or a feeling of deja vu is a classic description of a "simple partial seizure," and queasiness also fits the bill. The only test likely to show evidence of seizures is an EEG, and those often come up normal even when a person is known to have seizures; like you said, the test has to be done when the sensation is occurring for there to be a result.

Here's the Epilepsy Foundation's description of all the types of simple partial seizures: http://www.epilepsyfoundation.org/about/types/types/simple.cfm

(Just ignore the drawings; they show someone who has motor symptoms, but those do not have to be present.)

An epileptologist (a neurologist who specializes in epilepsy) should be able to diagnose the sensations.

Seizures could be a result of the surgery, or the result of a change in the AVM, so it's good you're helping him follow up with the next angiogram.

JH

Welcome aboard Fortunado,

Your son and I have shared the same phenomenon. I had just turned 17 when the AVM struck me down. My first reckoning was of the impending battle took place as my girlfriend and I were coming home from church in my brand new Dodge Charger Super Bee. Suddenly cars approaching in the outbound lane disappeared totally from view, replaced by the image of an empty road. When the oncoming reached the windshield, the cars reappeared. B y a miracle of God, I managed to get both her and I safely home..After I began to suffer twisting daggers in both eyes,I prayed":Lord, either take me Home or show me a sign I'll survive. Immediately the bedroom I was in lit up with a brilliant white light and my pain totally disappeared.Next I was taken to a sight on a local creek, where I had fished only two months before. I was compelled to look further into the background, and I saw a grassy knoll On it were three crosses- Jesus hung between the thieves..He looked up and smiled-Then I knew I'd be okay. Suddenly I snapped back, and the pain came back like being hit by a train.. The brilliant light also disappeared. My story online took it's name from this event-If you'd like to check it out - Here's the link: Fear Not, My Son. I've been blessed with miracles ever since. Id really enjoy meeting your son and sharing our experiences.. My Email is: ■■■■■■■■■■■■■■■■■■■■■■■■■. Have a great weekend,

Your friend,

Rob Forsythe



JH said:

Hi Fortunado,

These sound like seizures to me. An out of body experience or a feeling of deja vu is a classic description of a "simple partial seizure," and queasiness also fits the bill. The only test likely to show evidence of seizures is an EEG, and those often come up normal even when a person is known to have seizures; like you said, the test has to be done when the sensation is occurring for there to be a result.

Here's the Epilepsy Foundation's description of all the types of simple partial seizures: http://www.epilepsyfoundation.org/about/types/types/simple.cfm

(Just ignore the drawings; they show someone who has motor symptoms, but those do not have to be present.)

An epileptologist (a neurologist who specializes in epilepsy) should be able to diagnose the sensations.

Seizures could be a result of the surgery, or the result of a change in the AVM, so it's good you're helping him follow up with the next angiogram.

JH

Dear JH.

This was indeed helpful and I have already taken a look at the link to the Epilespy Foundation. I did not know that there were neurologists who speacialize in Epilepsy. Our nerurologist is not on that list but that does not mean he is not specialized. However, since he told my son we cannot tell since each time he took the CAT scans etc things were normal he told my son to go have a good life, I suspect that it does not hurt to go see someone else. He had told him to take the test where the electrodes are on your head for several days and that did not show anything. Good information thank you. Do you know of young adults that have had partial seizures but are not on medications and/or are on the diet that they prescribe? Once again thank you for this information.

I completely agree that it wouldn't hurt to see someone else. (I know it can be stressful and exhausting to seek another opinion, but it sounds like it would really be worth the effort in your son's case.)

We didn't know there were epileptologists at first, either! But we went to the Epilepsy Foundation for advice after a bad experience with an ordinary neurologist, and we only needed one appointment with the doctor they recommended to realize that there's a night-and-day difference between these and regular neurologists when it comes to epilepsy. Even the neurosurgeon didn't know as much about seizures and treatments as the epileptologist. You could call the local branch of the E.F. and ask for a recommendation, or you could call any hospital's neuro department and ask if they have anyone specializing in epilepsy (not just willing to treat it, but actually specializing in it). It really is worth it.

It sounds like you're looking for ways to live with/control the seizures without medication, is that right? Some people say they have success with stress-reduction (meditating, getting enough sleep, getting exercise), which couldn't hurt in any case. Some people have environmental triggers they can avoid. Is the ketogenic diet the diet you read about? It's so strict that it's mostly used with little kids; adults are unlikely to be able to follow it, since it's so different from the typical diet. The less strict version is the "modified Atkins diet," which is still really hard to stick to. Both are high-fat, high-cholesterol diets, and they have to be done with a doctor's supervision to be safe.

There probably are people who just live with the occasional partial seizure, but I've read that it's not the best idea, since each time a seizure occurs, it's "teaching" the brain how to have the next one. The best chance for seizure control seems to be to get them treated as early as possible, before they've had a chance to rewire the brain.

Good luck finding the new surgeon; we asked our old surgeon to recommend a new surgeon in NY, since we just moved here too, and he suggested Roosevelt Hospital, so maybe you can find someone there to do the angiogram.

How did you come to the AVM community was it through your personal experience or a loved one. You stated that you moved here (from where) and are you still seeking a surgeon as I will be sending out feelers with Doctors that I am familiar with and keep you in mind, yet I need a bit more information. Thank you so very much for your continued communcation.

JH said:

I completely agree that it wouldn’t hurt to see someone else. (I know it can be stressful and exhausting to seek another opinion, but it sounds like it would really be worth the effort in your son’s case.)

We didn’t know there were epileptologists at first, either! But we went to the Epilepsy Foundation for advice after a bad experience with an ordinary neurologist, and we only needed one appointment with the doctor they recommended to realize that there’s a night-and-day difference between these and regular neurologists when it comes to epilepsy. Even the neurosurgeon didn’t know as much about seizures and treatments as the epileptologist. You could call the local branch of the E.F. and ask for a recommendation, or you could call any hospital’s neuro department and ask if they have anyone specializing in epilepsy (not just willing to treat it, but actually specializing in it). It really is worth it.

It sounds like you’re looking for ways to live with/control the seizures without medication, is that right? Some people say they have success with stress-reduction (meditating, getting enough sleep, getting exercise), which couldn’t hurt in any case. Some people have environmental triggers they can avoid. Is the ketogenic diet the diet you read about? It’s so strict that it’s mostly used with little kids; adults are unlikely to be able to follow it, since it’s so different from the typical diet. The less strict version is the “modified Atkins diet,” which is still really hard to stick to. Both are high-fat, high-cholesterol diets, and they have to be done with a doctor’s supervision to be safe.

There probably are people who just live with the occasional partial seizure, but I’ve read that it’s not the best idea, since each time a seizure occurs, it’s “teaching” the brain how to have the next one. The best chance for seizure control seems to be to get them treated as early as possible, before they’ve had a chance to rewire the brain.

Good luck finding the new surgeon; we asked our old surgeon to recommend a new surgeon in NY, since we just moved here too, and he suggested Roosevelt Hospital, so maybe you can find someone there to do the angiogram.