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Raider11

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Hello,
I am new to this forum and new to the epileptic community. I need some help identifying and understanding my form of epilepsy, so if anyone has some incite, it would greatly be appreciated. I have had 2 seizures so far in my life I'm 23 years old and very healthy. I've never have had problems until two years ago, after college basketball practice I went to the grocery like any other time to grab a few things before going home. I went in and I immediately got extremely light head in the store. It shot through my brain and my entire body, I became sort of tingly in the head. I put my head down and was fine I ccontinued through the store for about 40 mins leaning over the cart keeping my head down low and occasionally closing my eyes. I felt better, I then stopped to get a gallon of milk out of the freezer and we I stood up and looked into the lit up freezer I got very light headed dizzy and afraid I new something was wrong so I headed for the self check outs I wanted out of the store. After making it to the self check out I thought, maybe my blood sugars low, I did. Just have a hard practice. But I've never had a problem with blood sugar before. I stood up once again from cart to go grab a candy bar and as soon as I made it to the candy bars I remember seeing a crunch bar and then all of the colors of the rappers rushes together and formed a rainbow and I passed out and woke up in the squad. I thought I had just fainted to my surprise I was told I had seizures that I had spun around I n circles with my eyes rolled back and proceeded to have a grand mal seizures right their at the self check outs [embarrarsing :( ] apparently i had began to turn blue and then i was "awake" for a while but not coherent, and I don't remember any of this. I had a severe headache when I awoke the paramedics put me on oxygen which both received the headache and woke me up as I felt very lethargic. When I got to the hospital they ran all sorts of test from blood work to cat scans. Everything checked out normal besides my blood sugar was low. They gave me an IV sent me home and had me contact a neurologist. I saw the neurologist and they had me do the temporal flashing light test. And absolutely nothing showed. I then went home and basically told it was a 1 time deal. Going into stores then made me a little nervous and I never felt quite right in them, however until about a year later I was in Walmart and again at night, I was in the store for about 10 mins and the sensation hit me hard in the head again I became light headed afraid and tingly in the head. I found a chair and sat down with my eyes covered for about 15 mins. I then felt fine, so I stood up and went down the shaving Isle, mid way down the Isle, it hit me like a ton of bricks again I started to become very scared. I squared down for a bit closed my eyes and breathed and began to feel better. I got back up went down the Isle some more, and it hit me again and again was worse. I started seeing double of things and I started seeing them in flashes one min they'd be their and the next they wouldn't I remember being confused as to what was happening and then realized that this was simply my eyes rolling to the back of my head. After that I was very fearful and I got up and decided to head for the exit. Apparently I didn't make it 5 feet as I again woke up in the back of a squad arriving to the hospital :(. Except this time I was in pain. It felt like I had been suckered punched by Mike Tyson. This time I apparently had another grand mal and had spun around again. And then I seizured and smacked my face right on the hard concrete floor. I broke my face that night on my right cheek bone. One thing I forgot to mention is, that both times after waking up from the seizures for about 45 whole minutes my entire body was on fire, I was intensely over heating. Or at least I felt as if I were. My body temp read fine on the thermometer, how ever I was so hot in the ER I c was shedding clothing just to cool off enough. My question is does any one know what's going on with me? Doctors keep writing me off. For the last year now I have been seizure free, knock on wood. However, it's not been a cheerful easy year. I have developed intense panic attacks that shut me down from doing things, I avoid stores at all costs and if I have to go in I go k grab one thing and get out now. If any one can help I'd greatly appreciate it. I personally think the stores are what are triggering my episodes, as both tines I've seizures they've been in stores, I think maybe the lights might have something to possibly do with it. But i dont know, I'd just like to pin point what my problem so I can get better and live life
 
hello raider,I'm sorry you had the seizure but anyone can have a seizure and eyes can roll to the back of the head in a seizure.You couldn't control what happened so it shouldn't be embarrassing lights can trigger sz's it's very common trigger.
welcome to CWE and hope your sz's get better also.Do you at least have a neuro now?
 
Thank you for the reply, and I've heard lights can trigger them I just don't understand why all my life the stores never bothered me, and I have never had any problems with lights and now all of a sudden I do. And no I currently do not. Everyone just rights me off and says I'm fine and that basically I don't have epilepsy that the seizures are just a one time thing and that all my test come back fine. I've read that the seizures could be caused by vassal syncope, a drop in blood pressure, but other than that I don't know. I just am trying to find answers because if I had some things to look into or for, maybe I could get a doctor or neurologist to look deeper into it and I could get the proper help. It's a scary feeling not knowing your triggers and having Unexpected seizures, I'm sure everyone on this page knows how I feel. And sorry I worded that wrong you are right its not embarrassing it's a medical problem and it's nothing I should be or anyone for that matter be ashamed of. I met embarrassing because I was passed out bleeding every where on my second seizure out of my nose from breaking my face from the fall.
 
Raider, 1st welcome to CWE.

2nd, I don't think the lights in the store are causing your seizures. I think you are genuinely having panic attacks because of that first seizure. I, too, avoid certain places because of how I've felt while there. I never eat out anymore because I spent a great deal of last year having partial seizures and would panic and wonder what was happening to me. At the time I didn't know what it was, but even now that I understand what was happening, I still avoid being out and fear what may happen any time someone tries to get me to go out.

If you're having grand mal seizures (which it sounds like you are), that is one problem which needs to be dealt with by a neurologist. But, it sounds undoubtedly like you're having panic attacks as well. For this, I've learned that there is no magic pill that'll make them go away.

I took Klonopin for over a year (for the panic attacks), but am in the middle of stopping that right now. It took the edge off, but has its own side effects as well. For the 2nd half of the year I was taking the Klonopin I started having partial seizures on a daily basis and had 3 grand mals between October and December 30 of last year. I can't say for sure that the Klonopin is the reason, but I'm trying to rule it out by not taking it anymore. Of course, by stopping the Klonopin the panic is returning. Sometimes you can't win for losing.
 
Hey Raider,

Sorry you're having a difficult time pinpointing the problem. Have you had any more problems with low blood sugar? Are you checking it daily? Low blood sugar that is not monitored on a daily basis can definitely bring about seizures. I have E and Diabetes and do need to check my glucose every few hours. Recently, I did have a seizure due to low blood sugar.

But it could also be the fluorescent lighting in the Walmart store that could bring on a type of Reflex Epilepsy, usually TC seizures. It sounds like you need to see an epilepsy specialist, an epileptologist, who can get to the bottom of your problem.

https://www.epilepsy.com/epilepsy/epilepsy_reflex


Good luck!
 
welcome raider!
cint makes a very good point re: seizures from low blood sugar. one of the first things to be done is a glucose-fasting test for blood sugar levels and possibility of diabetes (hugs cint). did the docs do that? if not, start a nice list of things to demand of them :)

pls keep in mind the following is based on IF you actually have epilepsy, which unfortunately isn't 'guaranteed' until a diagnosis is given. as i just started an epilepsy support group i want to further the ton of research i do... seen your thread a few hours ago and have delved into the possibilities.

'Photosensitive epilepsy’ is a broad term comprising all forms of heterogeneous epilepsies in which seizures are triggered by photic stimulation.

...link with above quote referring in great detail to your concerns (alot of it is doctor-to-doctor and can be tough to understand but not so much that it's incomprehensible, aka 'the gist.'
http://www.ncbi.nlm.nih.gov/books/NBK2596/

appears one of the main factors re: Reflex and Photosensitive (a sub-group of Reflex E) epilepsy is the following, which is big food for thought regarding what you experienced both times - from your explanation were tonic clonic (grand mal).

The International Classification of epilepsies did not recognize visual sensitivity (VS) or IPS [intermittent photic stimulation] sensitivity only as characteristic of any given epileptic syndrome, nor did it consider that VS justifies the individualization of a “photogenic epilepsy.” VS belongs to various forms of human epilepsies and, as a trait, a photoparoxysmal response (PPR) or VS can be found in generalized or focal, idiopathic, cryptogenic, or symptomatic epilepsies, and even within the context of situation-related (acute symptomatic) seizures.

...link with above quote referring in great detail re: visually induced seizures. informative and easy to understand.
http://epilepsyontario.org/epileptic-syndromes-and-visually-induced-seizures/

to get a better idea if Reflex/Photosensitivity is perhaps a possibility, i suggest making a list of all that you felt.
-simply bright lights in the store? or were they also flickering and if so, how bad?
-while walking around, at checkout etc. were your eyes fluttering?
-in your view was there dark rings, spots, or visual hallucination?
-did things seem bigger or smaller than they actually were?

epilepsy is usually diagnosed after two seizures (especially grand mals b/c they're unmistakeable as a seizure) with no cause. once your glucose levels are related to or tossed out as a cause, a referral to a neurologist is very important. if your medical community continues to sluff it off and won't refer you, best to do is raise serious shit until they listen.
in the meantime (yes we do learn/know more than doctors sometimes ;)) research what relates to your exact situation, print the facts out, then make an appt with your doc and take it with you. alot of times when they see that and realize a patient is VERY serious, they step up a notch to help.

Epilepsy: a condition characterised by recurrent (two or more) epileptic seizures, unprovoked by any immediate identified cause.

...link re: epilepsy overall from a world-renowned and reliable book (for anything you'd like to research this is unarguably the most reliable site (tho not the only). after my E turned for the worst and a lesion was found in my left temporal lobe, my doctor suggested this site (linked with pubmed) for research "as this is the one we use for definition and explanation." one of the best things she's ever told me.
...http://www.ncbi.nlm.nih.gov/books/NBK2609/

best of luck raider, keep us posted,
nat.
 
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Thank you everyone who is giving me feed back it honestly feels good to have some help on pinpointing this. I have not had blood sugar tested besides that one time. My second seizure they only did a cat scan to rule out brain tumors and found I had broke my face from the scans. They didn't give me an IV they didn't run test, nothing just wrote me a prescription for pain meds and prescription for antibiotics to keep my collapsed sinus cavity from getting infected. Everything you guys are giving me incite on is very interesting and helpful, c I ask tho does anyone no why I wake up so extremely hot??? And when I wake up I'm not dazed or confused only confused to no that I'm not were I was before the seizure. I've read most true seizures the individual wakes up completely confused. And as for sitting down and thinking if I'm hallucinating before the seizure I think I may because i honestly cannot focus when it happens like I'm day dreaming. And then I snap back I and out of reality if that makes since. I never see flashing lights circles or dots or anything. I also agree with the panic attacks, I know a lot of the time I'm having straight up panic attacks and i wouldn't say they have gotten better, but I have gotten more use to them. Sometimes if this helps at all, I don't honestly know if this is a panic attack symptom or not, but like in stores I will sometimes experience light headedness, and then when it happens it's always in the exact same spot, the top right corner of were my heart you be hurts a little like I'm being jabbed. I had an ekg done after my first seizure and I have had another one within the last year or so and nothing shows wrong on the ekg. So I'm assuming it's just a panic attack symptom or acid reflux like heart burn, because sometimes I get burning stomach acid during panic attack sometime the attack makes me queezy and it will lightly come up and burn my throat a lil.
 
I want to thank you guys for suggesting that blood sugar could be the problem. I bought a blood sugar meter at Walmart and started testing my blood sugar 3 days ago. My first reading was 74 I the ate super and a half and hour later it was 83, the next day I was feeling really really really good and out of curiosity I checked my B'S with the meter it was 116! And then today I out of no were I felt like complete cap I started becoming confused and very light headed while cooking super I started shaking and almost having a panic attack. My brother said I was turning pail. I took a B'S reading and it read 61! I immediately at a an orange and drank so mountaindew. I finished cooking super at it, and a half hour later checked my B'S as I was feeling better and it read 116! I read any reading under 70 is dangerously low. And I find it interesting that my sugar swings coincide with how I feel. I really think we may be on to something here! I will keep monitoring, Thank you every key soooo much!!!
 
That is awesome news! Glad you might be on to something with the blood sugar.
 
I like you have had grand mal seizures. I have had several tests and they have never been able to pinpoint the trigger and they have never found anything wrong with me. I am diabetic and the few seizures I have had my sugars were tested and they were within range,so for me blood sugar wasn't the cause. Mine were triggered when I was weaning off a med and when the dr. stopped one drug abruptly because of a rash that developed. I have spoke to another dr who advised me to completely take everything sugar free/aspartame out of my diet. I am diabetic and for years always bought things that were sugar free. The only coincidence with all of my seizures was prior I was drinking the same diet soda. I have cut artificial sweeteners out of my diet and I now have my smell back after years and other than the seizure I had after being abruptly taken off of a drug I have been seizure free. However, my dr won't take me off keppra because he assumes it is epilepsy. I have found many articles showing these sweeteners can mimic epilepsy. Always follow your dr's orders and continue meds you are given, but you can control and look deeper into what you are eating and drinking,. Just a thought, as I know it is frustrating when they can't tell you the cause. Stay well. .
 
However, my dr won't take me off keppra because he assumes it is epilepsy.

that's not very professional, and works against having this disease that's for sure :ponder:
it can't be 'assumed' and left at that, he needs to go through all the legwork (eeg's mri's catscan your history, everything) then rule epilepsy out or diagnose and figure out a plan. if we are diagnosed we need to move forward, not stay in idle being 'assumed.' this isn't like having a flu bug.

any chance you can pick out another doc? or specialist? and actually that's a good question... is this just a family gp or a neurologist?
 
I want to thank you guys for suggesting that blood sugar could be the problem. I bought a blood sugar meter at Walmart and started testing my blood sugar 3 days ago. My first reading was 74 I the ate super and a half and hour later it was 83, the next day I was feeling really really really good and out of curiosity I checked my B'S with the meter it was 116! And then today I out of no were I felt like complete cap I started becoming confused and very light headed while cooking super I started shaking and almost having a panic attack. My brother said I was turning pail. I took a B'S reading and it read 61! I immediately at a an orange and drank so mountaindew. I finished cooking super at it, and a half hour later checked my B'S as I was feeling better and it read 116! I read any reading under 70 is dangerously low. And I find it interesting that my sugar swings coincide with how I feel. I really think we may be on to something here! I will keep monitoring, Thank you every key soooo much!!!

Yes, keep monitoring your BS level. It definitely does effect how you feel.My endocrinologist does not want my blood sugar level to go below 80. When my level is below 60, I do feel faint and suddenly get real crabby! And when I had my car accident on Xmas eve, the EMT said my BS level was down to 40 and I had gone into a seizure. So, sometimes, they do mimic each other.

And get in to see an endocrinologist ASAP!
 
that's not very professional, and works against having this disease that's for sure :ponder:
it can't be 'assumed' and left at that, he needs to go through all the legwork (eeg's mri's catscan your history, everything) then rule epilepsy out or diagnose and figure out a plan. if we are diagnosed we need to move forward, not stay in idle being 'assumed.' this isn't like having a flu bug.

any chance you can pick out another doc? or specialist? and actually that's a good question... is this just a family gp or a neurologist?
This is actually a highly regarded neuro in our area. I have tried other neuro's prior to him and they were jerks. I think he looks more at the fact the few times I have been weened off of the drugs I have another seizure within 6 months. The only difference now is I don't consume any artificial sweeteners, back then I drank tons of diet soda. I have had numerous ct's, an mri, eeg, and blood work to rule out other issues. They have never found anything wrong with me that could explain the seizures.
 
They have never found anything wrong with me that could explain the seizures.

Me either, but I still had/have them. It is called idiopathic epilepsy. In addition to diabetes.
 
I like you have had grand mal seizures. I have had several tests and they have never been able to pinpoint the trigger and they have never found anything wrong with me. I am diabetic and the few seizures I have had my sugars were tested and they were within range,so for me blood sugar wasn't the cause. Mine were triggered when I was weaning off a med and when the dr. stopped one drug abruptly because of a rash that developed. I have spoke to another dr who advised me to completely take everything sugar free/aspartame out of my diet. I am diabetic and for years always bought things that were sugar free. The only coincidence with all of my seizures was prior I was drinking the same diet soda. I have cut artificial sweeteners out of my diet and I now have my smell back after years and other than the seizure I had after being abruptly taken off of a drug I have been seizure free. However, my dr won't take me off keppra because he assumes it is epilepsy. I have found many articles showing these sweeteners can mimic epilepsy.

Being abruptly taken off an AED can most definitely bring on a TC seizure, or make a person go status. And that is probably why the dr. is not taking you of Keppra.

Diabetes, high/low blood sugar can also cause seizures and often times are difficult to distinguish whether the person has E or diabetes, unless someone is with you or the blood sugar level is tested.

And recent research shows there is a connection between the two:

http://www.ncbi.nlm.nih.gov/pubmed/23590576
Association between seizures and diabetes mellitus: a comprehensive review of literature.
Yun C, Xuefeng W.

Epilepsy or seizures are often observed in patients with diabetes mellitus (DM), and an emerging association between the two diseases is more than coincidental based on recent research. Approximately 25% of patients with DM experience different types of seizures. Furthermore, diabetic patients who experienced episodes of DKA also have seizures more frequently. The precise pathogenesis of seizures in the diabetes patient remains undetermined. Currently, the leading hypotheses in the literature suggest that multiple physiological factors, such as immune abnormalities, microvascular lesions in the brain, local brain damage, metabolic factors and gene mutation, may contribute to this condition. To date, there are no international criteria for the diagnosis and treatment of this condition. Although it is commonly assumed that antiepileptic drugs are necessary, most of the partial epilepsy patients with non-ketotic diabetes are resistant to frequently used antiepileptic drugs. In contrast, partial status epilepticus can be treated by diazepam, and carbamazepine is reported to be effective to some DM patients with epilepsy. However, anti-diabetic drugs are considered to be the most important factors in the treatment of this condition. When the blood glucose levels gradually return to normal levels, patients can no longer generate seizures even when antiepileptic drugs are discontinued.
 
Hypoglycemia can cause everything you described before the seizures, and also cause seizures if extreme. It's common with diabetes but can happen for other reasons. If your blood sugar drops dangerously low your HPA axis will send out a series of powerful hormones to try and raise it-- adrenaline is part of that. It might make you think you are having a panic attack. It can also make you feel like you are boiling up in heat. Please see an endocrinologist and describe all of this to him/her. In the meantime, don't go long periods of time without eating.

No one should be writing off a broken face and tonic clonic seizures even if EEG is normal. Sorry you've had that happen.
 
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