What kind of seizures are these?

[Kyla]

Doctors are always on the fence. Some say I'm having seizures, and other do not. Want to know your guy's input. Or if anyone experiences 'seizures' (if they are seizures) like this, it would be comforting to know I'm not alone on this. I'm sorry for this being really long.

They first started off as being short stare offs. It's almost like your day dreaming but you're not thinking about anything. My vision would go blurry (it feels as though your eyes are trying to go cross eyed, if you were to cross your eyes right now just to the point where everything is blurry (so you're not actually crossed eyed), that's what it's like). This would last about 10 seconds. I would stop what I'm doing, and just feel somewhat weak. I can usually feel when these are going to come on. It usually starts with my eyes, I can feel them trying to become blurry. I've tried fighting it before (by essentially trying to 'uncross' my eyes. I'll be successful for 1 second, then immediately get sucked back into a full blown episode and become to weak to try and fight it).

Then those changed. Same symptoms, but adding on that my right right arm would jerk every now and then during them (the arm would feel kind of tense and I could almost sense when it was about to jerk). I am aware of these jerks. It would either be the jerks, or my right arm/hand (sometimes with my left hand involved depending on the movement) would be doing some sort of repetitive movement like tapping my fingers together, rubbing them on something, or fumbling with my left hand. These movements I am usually not aware of them. If I do suddenly become aware that I am doing these movements (all along while vision is still blurred and weak), it fells as though if I were to try and stop myself, I'd be a lot worse off (its a weird feeling I can't really describe).
^^^^ this new episode would last anywhere from 10 seconds to about 1 minute (or so it feels)

Aside from those episodes, I randomly get these moments where everything seems really weird. It's hard to describe but I'll try my best. It's almost like you don't feel grounded, not necessarily detached from your body, but not grounded. Sometimes it also feels like my perception becomes off. Not majorly, but I'll feel slightly short or taller, or things just appear weird. I don't know, everything just seems and feels....weird. This usually lasts anywhere from 30 seconds to 5 minutes and I can carry out normal functions (talking, walking, etc) during these but know that something is 'off'. People can sometimes tell that I'm having one of these because I guess I get a little quieter, or I have a slightly confused looked on my face. Sometimes this weird feeling can get so intense that I'll literally feel like I'm going to faint or have a slight sick feeling in my stomach.

I also had an episode last year. I was sitting down with some friends. They were playing video games and I was watching (we were in a well lit room, the tv is a commodore so it was super small haha so I don't think this was photosensitive related? Although I do suffer from photosensitive migraines). I got hit by one of those 'weird feeling' episodes described in the paragraph above. This one was particularly intense. I remember my friend then asking me if I wanted to play next round and I just shook my head. After that, I remember taking 2 deep and fast breaths and then my whole body started trembling/shaking. I think my eyes were fluttering because I remember during the episode seeing snippets (almost like if you were to be blinking your eyes really fast). I asked my friend after about the episode and he said all the same things but also noted that my right arm was curled in and clenched. I was not aware of this. I remember immediately after the episode I was tired, and felt like I was going to throw up. I can't remember how long this episode lasted, I think he said about 30-45 seconds?

I've also noted an increase in deja vu within the last year and last 6 months. They don't last long, maybe about 30 seconds and I have no other symptoms with it. In fact, I smile during them and just tell people around me "this is so weird haha, deja vu's hitting me hard right now" and try to poke fun at it.

Lastly, for the past 6 months or so, I've been having difficulties finding words and forming sentences. I've had this issue for a while ever since the episodes started but lately (the past 6 months), it's been getting worse. I have to take tons of pauses during my sentences so I can properly formulate and order the next words. Sometimes it gets as bad as I start to slur some words together, or if I'm saying something like 'chair' in the sentence, it'll change to a completely different word for no reason like 'book'. Even my thoughts are hard to formulate as well. When I'm talking, I also sometimes just randomly stop talking and forget what I was going to say, what I had said, or even everything that was being talked about in general. It's like someone has suddenly pulled the plug in my brain and it shut off. I literally feel like a 6 year old (you know how they take forever to spit out one sentence haha).

I've had 2 EEGs (30 minutes, and one sleep deprived) but they've both come back normal. I am also on no medication for these episodes.

Thanks guys:hugs:

 

[Belinda5000]

The first one you talked about where you just stare is an absence seizure . I haven't had one in years,

 

[Nakamova]

Hi Kyla --

Along with the absence seizures that Belinda noted, the other symptoms you describe (including your photosensitive migraines) could definitely be seizure-related. Since you don't lose full consciousness, they would most likely be simple partials, although the ones where you are unaware of moving your arm or hand could be complex partials.

Simple partials can take the form of motor seizures (like the tapping, jerking or clenching you experience). They can be psychic distortions, like the deja vu, jamais vu, out-of-body sensations and alice-in-wonderland sensations you describe. They can be unusual sensations like nausea or dread. Blurred vision is also a seizure symptom, particular of occipital lobe seizures.

When I'm talking, I also sometimes just randomly stop talking and forget what I was going to say, what I had said, or even everything that was being talked about in general. It's like someone has suddenly pulled the plug in my brain and it shut off.

This sounds exactly like the "blips" or breakthrough seizures I've experienced when my dose of medication is too low. It feels as if someone pushed the re-set button very quickly, and I lose the thread of the conversation, just as you describe. These are a form of generalized seizures rather than partials (since the full brain is affected), but I don't think they are absences.

You should definitely push your neurologists for a diagnosis and treatment based on your symptoms alone. They should know that a positive EEG can help confirm an epilepsy diagnosis, but a negative one can't rule it out. Do you keep a seizure journal? That might be helpful to your docs in making the diagnosis, especially if it indicates that your symptoms are escalating in frequency, duration or kind.

Questions:

1. Have you ever taken preventive medication for your migraines, and if so, did it help?

2. Do you have a history of digestive issues, coeliac disease, or gluten sensitivity? I ask because occipital seizures (the ones that can cause blurry vision) are often linked to malabsorption issues related to gluten.

 

[valeriedl]

I have simple partial seizures that are very much like what you described. I know what's going on but things just aren't right. Sometimes I'll be light headed, dizzy, lips and fingers might tingle. I may slur my speech too. Once when I was in the living room all the furniture look like it was in the wrong place. This will usually last a few minutes then I'm fine. Everyone is different when it comes to things that happen during a seizure and how long they last.

During many of my complex partials I'll black out and just stare into space. Sometimes a part of my body, like arm or leg, might shake a little. At time's I'll do things, like pick something up and play with it, or even walk around. I might talk during them too but I don't know, or remember, what I'm saying and I don't make sense as to what I'm saying.

I have a horrible time thinking of words. I don't know if it's epilepsy or med related. I know exactly what the word is that I'm trying to say but just don't know what the word is. I'll usually describe it, like saying the cold thing you keep food in - the refrigerator. I really feel like a 6 year old when I do this!

 

[Kyla]

Thank you everyone for the responses, I greatly appreciate it. I would really like to make another appointment with my neurologist. Every time I go though (I've been 3 or 4 times) they just bring up the EEGs and say that it's not epilepsy (which is great! But I'm totally convinced they are seizures, I want to get rid of them and move on with my life because it's making me tired and decline in my performance during school). I should look into getting another opinion from a new neuro this time. Thank you all for the help

as far as Nakamova's questions
1)That's the weird thing, I haven't and I've had my migraines since I was in grade one. My sister has had a few migraines in her late teens and has preventative medication but they wont give me any and I have them a lot! But no, not on any preventive medication for them which sucks because when I do get them, they take half my sight away!
2) I am slightly gluten intolerant. It wasn't enough to make me gluten free, but it was there. I also was recently diagnosed with IBS. I heard that IBS can be common in those with epilepsy? It's weird how the two go together

general question: I thought after an absence seizures, the person cannot remember it? A lot of you had mentioned I could be having some absence seizures but I remember having an episode afterwards and generally when it's happening.

Thanks again everyone, bless you all

 

[Dutch mom]

Sounds to me like absences, myoclonic jerks and simple partials since you're conscious.

 

[Nakamova]

I've had my migraines since I was in grade one. My sister has had a few migraines in her late teens and has preventative medication but they wont give me any and I have them a lot! But no, not on any preventive medication for them which sucks because when I do get them, they take half my sight away!

It's possible that your migraines are related to your other symptoms. Epilepsy and migraine are close cousins, and can sometimes run in families. Your sister's migraines and your seizure-like symptoms could both stem from the same genetic susceptibility. Some medications used to prevent migraines (such as Topamax) are also used to treat seizures, which is why it might be worth seeing if a migraine med helped your other symptoms.

I am slightly gluten intolerant. It wasn't enough to make me gluten free, but it was there. I also was recently diagnosed with IBS. I heard that IBS can be common in those with epilepsy? It's weird how the two go together.

Often malabsorption issues in the gut can create an imbalance in the brain. The gut-brain connection is one that neuroscience has started to focus on more and more. Hopefully there will eventually be targeted treatments that will evolve out of the current research.

See these articles for more info about the connection between gut issues and seizures:
http://jnnp.bmj.com/content/75/11/1623.full
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3944951/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2661192/

In the meantime, it might be worth going completely gluten-free to see if your symptoms lessen in response.

general question: I thought after an absence seizures, the person cannot remember it? A lot of you had mentioned I could be having some absence seizures but I remember having an episode afterwards and generally when it's happening.

I agree that they might not be absences. As I mentioned, I experience the same kind of symptom, and I also recognize them while they are happening and remember them afterwards. I think they are perhaps a "hybrid" seizure that doesn't fit one of the standard categories. They are a bit like absences (or other kinds of generalized seizures) in that the whole brain is involved, but they are so extremely brief that perhaps "buffer memory" is retained while the brain flips on and off.

 

[masterjen]

Hi Kyla;
Even if what you are experiencing are not seizures, your doctors still have to find out what is wrong and failing that at least treat the symptoms. If they don't know what is going on, ask to see another neurologist. If the problem is still not felt to be neurological ask what kind of doctor you should be seeing for another opinion to figure all this out.

 

[Kgartner]

They should know that a positive EEG can help confirm an epilepsy diagnosis, but a negative one can't rule it out.

This is SO important to remember.

Since much of what you are experiencing sounds like they might be simple partial seizures, I think it is also important for you to know that even if you have a simple partial seizure during your EEG and the EEG is negative for seizure activity, that does not rule out epilepsy either! Many simple partial seizures (up to to 80% in some studies) do not show up on a scalp EEG - they are missed because they involve too small an area of the brain, or the brain area is too deep for the signals to reach the scalp. My daughter's SPs do not register on EEG - even when they progress to complex partials or tonic-clonics which do show up on the EEG, that initial seizure activity is not recorded.

You definitely need to continue to pursue this with your neurologist!

 

[Kyla]

Thanks again everyone for the replies and help, I really appreciate them!

Thanks for the articles Nakamova, it makes more sense now how the brain and GI are connected and can effect one another of one isn't working. I should maybe ask my gastroneuro about some other IBS medications that could help both the IBS and seizures and see if they go away? (since the medication I'm on now isn't helping much at all. It's an extremely low dose of amitriptyline)

Thank you masterjen for the comment. I completely agree, every single time I go to the neuro, they order an EEG, it comes back normal, then they just say they don't need to see me anymore. Then I'm left feeling intimidated (the tone they use in their voice is intimidating and almost sounds rude or like they are making fun of me for coming to see them).

kgartner- Thank you, I've heard tons of people say this before. Why don't the doctors seem to know this? It's frustrating. What testing can be done then to detect partial seizures?

 

[Nakamova]

You might show your neuro the article at the link below.
http://jnnp.bmj.com/content/76/suppl_2/ii2.full
It goes into detail about the uses EEG in epilepsy diagnosis and treatment, but of particular relevance are the second and third paragraphs:

...the EEG has a number of limitations. Electrical activity recorded by electrodes placed on the scalp or surface of the brain mostly reflects summation of excitatory and inhibitory postsynaptic potentials in apical dendrites of pyramidal neurons in the more superficial layers of the cortex. Quite large areas of cortex—in the order of a few square centimetres—have to be activated synchronously to generate enough potential for changes to be registered at electrodes placed on the scalp. Propagation of electrical activity along physiological pathways or through volume conduction in extracellular spaces may give a misleading impression as to location of the source of the electrical activity. Cortical generators of the many normal and abnormal cortical activities recorded in the EEG are still largely unknown. Spatial sampling in routine scalp EEG is incomplete, as significant amounts of cortex, particularly in basal and mesial areas of the hemispheres, are not covered by standard electrode placement. Temporal sampling is also limited, and the relatively short duration of routine interictal EEG recording is one reason why patients with epilepsy may not show interictal epileptiform discharge (IED) in the first EEG study.

If inappropriate questions are asked of the EEG, diagnostic errors will occur, and there will be poor yield of information that could be useful in the management of patients with seizure disorders. It is crucial to recognise that a normal EEG does not exclude epilepsy, as around 10% of patients with epilepsy never show epileptiform discharges. Secondly, an abnormal EEG demonstrating IED does not in itself indicate that an individual has a seizure disorder, as IED are seen in a small percentage of normal subjects who never develop epilepsy, and IED may also be found in patients with neurological disorders which are not complicated by epilepsy.