Psychogenic seizures

[Littlebit Sally]

I have been told by my neurologist that I have psychogenic seizures. The seizures manifest themselves in the form of a staring spell in which my eyes micro-focus and my eyes actually feel like they are locked into staring at a tiny spec on the ceiling but I can avert my gaze but everywhere I look I am still micro-focusing on tiny itty bitty details in my environment. My eyes physically feel different.. It takes several hours to go away and the only remedy is to shade all light from my eyes and try to go to sleep for at least a good hour or two. It is maddening and so inconvenient to leading a spontaneous life. I don't drive at night because the staring spells usually happen in the evening when I am tired and my brain is tired. Stress, bright lights or flashing lights can trigger them... Now I've had to stop drinking ANY alcohol because it tends to bring them on. Also ciggarettes can spur them as well. I have quit smoking about 2 years ago but every now and then I relapse but I always return to abstaining from smoking.

Does anyone have this particular kind of seizure? And if so, how do you cope with it? Is EMDR effective for this kind of seizure? Also, what of bio-feedback?

 

[schiz01]

Sounds strange
I presume you have had an EEG test done to confirm its not epilepsy
Are you on any medication

 

[Littlebit Sally]

HI

I've had several EEGs about 5 or 6... About 3 of which showed seizure activity in the left temporal lobe. They have never caught the staring spells on an EEG as they usually happen at night and they are unpredictable as to when they strike. I have had seizures of the shaking kind I forget which kind they are. Anyway, it is very hard to catch a staring spell because the emergency rooms are not equiped with EEG monitoring units probably because when someone is seizing they can't exactly hook them up to the unit. In my case, They could take hours to put the electrodes on and it wouldn't affect me because my seizures have to do with the eyes mostly and the seizures can last hours. I would absolutely love it if the emergency room could accomodate me and get to the bottom of this as it happens.

I have had a stay in the hospital EEG monitoring ward. They ruined my hair with that gooey crap they put all over your scalp. I had to cut my hair considerably shorter, it was so deeply matted from the glue. Oh it was horrible. I should find out if there is a hospital that uses an EEG machine for emergency diagnostics. That would be perfect.

 

[Littlebit Sally]

OH, I forgot to answer the question about the meds... I have tried Depakote, Tegretol, Keppra, and finally Lamictal... I take 200mg. of Lamictal for moods and for possible epilepsy. I think the lamictal does more for me than any of the other drugs and doesn't cause alot of weight gain. However, the spells come on at the most inconvenient times, with people around to witness how goofy I look staring at the ceiling for hours. They happen even when I am home by myself and relaxing, like I said they are completely unpredictable... It seems that the slightest bit of stress triggers them...

OH well I will keep on looking into it and maybe they are right about it being a conversion disorder...

It does look very strange and my mind is not all there when they happen, I can't have a complex conversation. I can listen and aswer yes or no questions but for me to try to talk, it is extremely hard to when your mind is in a fog. Somtimes I have trouble identifying something as simple and familiar as a pair of scissors on the counter. It's like my brain somehow knows it but can't name it or remember what it's use is. You can imagine how it would be if I lost my car keys!! I was stranded at the vets office on account of these spells and my car keys were on the asphalt right next to my car and I couldn't for the life of me find them even though I was looking directly at them. It's like temporary alzheimers!

 

[schiz01]

Only reason i asked about the meds was that meds can have some strange side affects some times.
Years ago i had an EEG done to rule out any strange electrical activity and while it wasn't completely normal it fell with in what was normal if that makes any sense.
I used to vague out similar to what you describe but more of an altered state of reality.Hard to describe really but it was put down to my schizophrenia and it being all in my head.
Only thing i can think of beside it being psychological is a lack of vitamins and minerals,you could try finding a doctor that specializes in orthomolecular medicine.

 

[Ainsworth]

hey Sally,

you have psychogenic seizures but are classed as epileptic as well. (did i get that right) ?

you say they havent caught the staring spells on EEG which makes me wonder why they havent done a prolonged term video-EEG monitoring on you. this would be done over 24/48 hours. also did they do a brain scan? have they completely ruled out absence epilepsy?

you say you have shaking seizures, are you conscious when you have them or do you black out. there are different types, tonic clonic is the most common and it is rare to have them in conscious form, but i have seen it happen. its also the most common form of epilepsy (i think) from the temporal lobe. also left temporal lobe problems do have effect on decreased recall of verbal and visual content, including speech perception, which is what you describe.

the fog you experience could be from foods and staying away from anything with MSG or aspartume would benefit you. also limit anything which naturally contains high levels of glutamic acid.

 

[schiz01]

Hey Unremarkable
You seem to have some experience with this....do you have something similar.
The brain works in such mysterious ways
When i was psychotic my left little finger went numb and had pins and needles in it for months,I was sure i was going to have a stroke or something.I had and have had heaps of tests done and they say its all in my head so speak and that its caused by stress.When i feel unwell it often returns as well as other strange sensations.
Something else that happens to me when I'm stressed is a blind spot in the middle of my vision.If i try to read a book for instance there will be a totally blank space about the size of a golf ball and its nearly imposable to read.I have been told by an optometrist that it is quite common and usually accompanied by a migraine but i don't get the migraine.

Orthomolecular medicine is somewhat controversial but i have found large doses of niacin to be helpful for my condition.I also get vitamin B shots that seem to help relax me.Fish oil ,Omega 3 is also good and has been proven to be good for the brain.
http://www.viswiki.com/en/Orthomolecular_psychiatry

 

[Ainsworth]

hey schiz01, you have a PM explaining, have a good day

 

[Littlebit Sally]

They have done a five day EEG and not once did I have a staring spell- wouldn't that be the case! Anyway, most of my seizures which sould like tonic Clonic would come on during the EEG as a result of a strobe light and deep breathing. Always these particulr seizures would happen during the test. The only other time I have had seizures of this kind is from a very bad drug interaction.

Then I had an ambulatory EEG for three days and had a spell but it did not show seizure activty. I feel like I am out of and unaware and that I forget what I am doing. Sometimes when I stare I have to touch the object I am staring at and it's like I feel incredible fascination with a tiny spec on the wall or anything else that is. I am not able to do much of anything when these spells occur. ONe EEG where I actually had one of my spells but didn't catch what they were hoping to see. So they told me it was psychogenic in nature. I have also had tonic clonic seizures in which they did not show any seizure activity. I've had 3 EEGs in which seizure activity was found.

I take tons of supplements now, they were prescibed to me by a psychiatrist i used to see.. They are Adrecor, Travacor, Balance D and Avipaxin.
I worked up to a large dose of these supplements and other of my own. For some reason now, I am having quite a bit of trouble with my moods and schizophrenia lately. I have cut back on such high doses when I started crying all the time and feeling paranoid, intrusive thoughts. I don't feel I have a deficiency any longer but I still have the staring spells.

Just as a side note, I have had these staring spells since I was in my late teens before I started on schizophrenia meds. So they are a mystery to me, just can't quite figure them out. Do you feel that one test where I've had the staring spell is enough to give up on it and declare that it is all in my head?

Those tests before with seizure activity all seem to be highly localized or contained in the left temporal lobe but they were provoked seizures so do they count?

Thanks for your opinions.

 

[Ainsworth]

hey Sally, this is based on my opinion.

I think because they provoked your seizures in a clinical eviroment it shows you are epileptic and have a tendancy to photo-epilepsy. Flashing lights and deep breathing is often a trigger for absence epilepsy (which is blank staring fits that can come in clusters, which can also cause status) Partial seizures (simple and complex) are seizures that happen when awake and involve senses, feelings and movement. The person is fully aware of these and can even respond to questions and look ok but reacting strangely or oddly to others. Partial seizure only come from certain parts of the brain and not a generalised seizure (generalise start in one place then spread effecting the whole brain)

I dont think you should give up and put it all down to being in your head. I have also seen someone have a seizure and it not register on the EEG.
I dont think you need supplements, but its never a bad thing to take them as long as its not to much but really feel you need to look at your diet and what you eat and drink. Food is a major trigger for epileptic/non epileptic states.
My ideas are simple ones (and could be disputed by some) but feel to much glutamic acid in anyones diet who has history or seizures or mental illness plays a big role.
The brain has two neurotransmitter’s GABA and Glutamate and they are no way balanced in the neuro field but for GABA to be changed into Glutamate an enzyme called glutamic acid decarboxylaze has to happen. This glutamic acid is found naturally in all things, and in some it is very high. Lets just say if a person couldnt control the levels and it floods into the brain, that would send it haywire and certain neurological conditions could be the result.

anyway as i said its my opinion

take care x

 

[Littlebit Sally]

I had a neurotransmitter test and My GABA was 1.7 with the normal range of 1.5 to 4.0 and the glutamate was 24.8 with the range being 15 to 35.

I had 11 other neurotransmitters tested and I could post the results which I may as well do since I am replying now.

Epinephrine- 7.2 with the range of 8 to 11

Norepinephrine- 23.6 with the range of 35 to 45

Dopamine- 124.5 with the range of 125-175

DOPAC- 393.4 range (900-1,250)

Serotonin- 54.9 rnage(125-175

5-HIAA- 2102.8 range (2,500-5,000)

Glycine-732.0 range (375-1,250)

Taurine-16.4 range (150-450)

PEA-30.6 range (30-70)

HIstamine- 12.8 range (10-20)

Creatinine-236.3 no range provided

I am confused by this test as I don't really understand the role of each different neurotransmitter yet. You might have a clue as to what these results mean?

 

[Littlebit Sally]

By the way, the drugs I am taking currently are Abilify 45 mg. and Lamictal 200mg... I just started taking Benztropine for suspected tardive Dyskinesia.

If I remember correctly was that I had a suicide attempt just BEFORE they did the neurotransmitter test and was highly depressed and paranoid around people. I took a whole bottle of Seroquel and I am lucky I survived. This was about 4 months ago and I have been on supplements as a result of these findings. They helped me alot at first then for some reason the last two or three weeks I am relapsing into my illness, becoming very obsessive and depressed- crying at least once or twice a day. I know these supplemnets helped me some but now It seems a little premature to say that they work 100% and that I should NEVER have a relapse as my doctor who is a D.O.

He diagnosed me with ADD and didn't listen to my description of my symptoms of schizophrenia and tendancies towrds OCD. Although if you look at his research on his website, he does nothing else but study ADD. It seems he is "obsessed" with ADD. He even thought I have a gluten allergy and that is the explanation for my schizophrenic symptoms. Yet I was recently tested for a gluten sensitivity and it came out negative for that food allergy. I felt like he and the therapist under him dismissed my symptoms and were not very good at actually listening to me. They basically told me what was wrong with me. I did attempt suicide under his care and he wanted to put me on Adderal and as I understand it that stimulants like that can exacerbate pyschosis symptoms. It was like my past didn't exist to these doctors.

 

[Littlebit Sally]

Didn't mean to get off the subject heading towards schizophrenia. He also seemed to think that the supplements would cure my staring spells as well and they haven't.

 

[Ainsworth]

hey Sally, im not a doctor or anything but do recognise the what some of the levels of the test mean. the first 5 are do do with mood and fight or flight as well as anger.

the DOPAC is low but you did say you were in a depressed state at the time of the test which could well be why it is so low.

the one that interests me is the Taurine, it has been known for this one to help in epilepsy and your level was very low.

what did the doctors say about these test?

 

[Ainsworth]

the glutamate was 24.8 with the range being 15 to 35.

oops forgot to reply to this bit, i would be very interested in the rate of Glutamate whilst you were in the seizure/non seizure state to see whether that level got high or stayed the same?