really need help... feel like im the only 1 with this!

[Hand of Blood]

i hope someone out there can relate to this

well nearly every day ALL day i have like a aura or warning but nothing happens it just stays there all day.... its like confusion, lights seem to bright, twitching sometimes only small, just a feeling like im going to have a seizure

i do have epilsey and it only came back after 4 years of not having seizures but ive had that aura type thing for years but its getting worse i dont know how to explain it to doctors!!
I dunno what to do anymore i try explaining to docs etc but no1 helps and all my tests always normal... i just cant live like it anymore

 

[Endless]

Hi, Hand of Blood,

Welcome to CWE - I'm glad you are here!

My epi says that auras are actually simple partial seizures. If your seizures originate in the frontal lobe, or deep in the temporal lobe, they may not necessarily show up on an EEG. They may be too deep for the electrodes to pick up, or they may not be happening at the time of the test and haven't made enough permanent changes in the brain to pick up inbetween seizures.

How did your EEG come out the first time around?

My epi also says auras don't last all day. But I'm here to say they sure can. I get this weird vibrating/electrical feeling in my body & head, plus a feeling of forboding. It's really icky. He has me track them the same as the regular kind of simple/complex partial seizures that I get.

Are you seeing a neurologist? Are you on medication right now? What did your doctor say four years ago when you were diagnosed?

Maybe it's time to see another and get a second opinion. The last thing you need is to have your seizures escallate again. It's best to stop them while they are still less intense.

 

[huskymom]

Hi Hand and welcome!!

It is always hard to explain what you are feeling to the doctors because there just aren't the right words to do so! Keep hanging in there!!!!

 

[crannsmum]

Hi hand of blood, there is nothing more frustrating that a Doc with a blank expression! in my experiance ( for what it's worth) your best action is a positive attitude and I'm sure thats the last thing you feel like having right now. You havent put many details in your post about what meds you've been on, how long etc so it's difficult for anyone here to offer good advice but if you go to your doc with all your info written down,( sounds daft but you'd be surprised how your brain deserts you when confronted with a white coat!) keep a diary of your experiances, how long they last etc. Try to consider any changes in your life that may have effected your Epilepsy, that sort of thing. You will be showing you doc that you are being " pro-active" and just maybe they will do the same. They cant read your mind...... you have to tell them!

 

[Hand of Blood]

sorry for not putting much details... well i had epilsey for about ummmm 6 years now first 2 was terrible i have grand mal/ tonic clonic used to get em about every 2 - months for 2 years i been on tegrotol 800mg for the 4 years i been free now im up to 1000mg but after about 3 weeks of going up a had a seizure
my docs and nero are ignoring when i keep telling them about feeling those strange feelings every day.... it worries me coz it used to be only every often now its like every day nearly all day long which means it getting worse im scared coz i just had a baby hes 5 months and im alone through the day with him i worried i get to the point i so confused and dont really know what im doing..........
it really is unbarable to live with it feels like i keep spacing out or out of body exparance type thing its very much like the aura i get before i have tonic clonic seizure but not as bad..... does anyone think i could be having partial seizures all day???
what got me down there recently was i had just bought the kinet for xbox and on night of gettin it i took seizure while playing now im scared to play it

 

[stephk]

hi, hand of blood
First i want to let ya know that I know way less than most people on here. With that being said, if you don't mind me asking... did you siezure activity go up while you were pregnant or after you had you baby? For me mine did. My complex partials not only started lasting longer, but they became alot more frequent. My neuro continued to increase my meds, and didnt seem to pay attention until finally after 3 years i told him that i was going to find a new neuro... he referred me to a specialist for a second opinion. He also lowered one of my meds after noticing my levels were too high. Has you doc checked your levels.. I do know that if your levels are too high it will actually cause you to sieze. I have experienced something to which you describe ( it was a lil different) but only twice in the last year. My neuro told me that it was a siezure, and to get to a safe area until it passed.

I hope that you can get it figured out. Good luck! Stay positive!

steph

 

[Hand of Blood]

well i was free during being preg its only 4 months after ive started ... they havent done my levels since putting my tabs up i think my levels was bit low when they put them up

 

[Nakamova]

Stephk has a good point -- estrogen levels fluctuate during pregnancy and afterwards, and they can mess with the levels of your meds, and/or lower your seizure threshold so you're more vulnerable. So it might be worth getting another level test. And finding another neurologist who will listen.

 

[crannsmum]

Well, giving birth is a pretty big change in circumstance!! feeling like your head and body are in two different places with a 5 month old is something that many new mothers can really relate to! lack of sleep can do that alone, not to mention hormones, extra responsibilities etc.
The most common cause of post traumatic stress in women, is giving birth... not that I'm suggesting that you have that but it highlights the huge impact that giving birth has on a person. It isn't uncommon to take a whole year to physically recover and everything to start settling down to anything like normal! blood tests could even show something as simple as low iron levels which wont help the situation. If being scared to be alone with your baby during the day is getting too much, try to find ways of reducing that risk. getting out and about, mom and baby groups, visiting friends, have friend come and visit you will all help. As for the Xbox.. it may have caused the seizure and then it may have been coincidence, you wont know unless you play it again..... just be sensible and only play it when someone else is arround:bigsmile:

 

[acpollard2010]

one ur doctor should be more understanding and i have those same things i thought it was just part of my generalized epilepsy but im on a crap load of aed's

 

[qtowngirl]

it really is unbarable to live with it feels like i keep spacing out or out of body exparance type thing its very much like the aura i get before i have tonic clonic seizure but not as bad..... does anyone think i could be having partial seizures all day???

I would think so, yes, as Endless said, auras are simple partial seizures. They're certainly not the same for everyone, and are based on four different categories, but from what you're describing it fits into at least one. And though individually they don't last long, they definately can happen over and over all day. In my early 20's I used to get them like clockwork for three days at a time, every time. HELL.
A new neuro is the best thing, hopefully someone who will take you seriously and adjust meds accordingly. A good thing to do is some research on simples and use the info to help describe to the new doc what you're experiencing.

 

[qtowngirl]

Hand of Blood... here are the classifications.

Simple Partial seizures are usually put into categories depending on the type of symptoms the person experiences:

MOTOR seizures:
These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body. These movements may spread, either staying on one side of the body (opposite the affected area of the brain) or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or hand movements.

SENSORY seizures:
These cause changes in any one of the senses. People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness. Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space. They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear.

AUTONOMIC seizures:
These cause changes in the part of the nervous system that automatically controls bodily functions. These common seizures may include strange or unpleasant sensations in the stomach, chest, or head; changes in the heart rate or breathing; goose bumps.

PSYCHIC seizures:
These seizures change how people think, feel, or experience things. They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language. They may suddenly feel emotions like fear, depression, or happiness with no outside reason. Some may feel as though they are outside their body or may have feelings of déja vu ("I've been through this before") or jamais vu ("This is new to me"— even though the setting is really familiar).

 

[Lunameower]

I definitely agree with the whole trying to explain things to Dr.s deal, I think that it's hard for them to admit that they may not understand what it is that we are going to so they blow us off or tell us something that has nothing to do with what we said, I've had a mixed bag, some great ones and some not so great, I'm currently on the hunt for a new neurologist, mine is too new agey, anyhoo..
My seizures seem to be hormonally based as in I have them mostly in a two week span around my period and when I am having them I have a lot of auras or simple partial seizures, but I also go through something similar to what you describe, but maybe not as strong. I feel like I'm on the verge of having a aura especially when I think of certain memories or do certain actions, it's really rough, I get really paranoid and it takes a major toll on me when it's happening, but then it just like goes away, the weird feeling, that is, until I start to have them again, anyway, I'm on a pretty good dosage of Keppra currently, but when I'm having the auras it's really rough, hope you can get some help.

 

[momof3boys]

Hand of Blood... here are the classifications.

Simple Partial seizures are usually put into categories depending on the type of symptoms the person experiences:

MOTOR seizures:
These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body. These movements may spread, either staying on one side of the body (opposite the affected area of the brain) or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or hand movements.

SENSORY seizures:
These cause changes in any one of the senses. People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness. Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space. They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear.

AUTONOMIC seizures:
These cause changes in the part of the nervous system that automatically controls bodily functions. These common seizures may include strange or unpleasant sensations in the stomach, chest, or head; changes in the heart rate or breathing; goose bumps.

PSYCHIC seizures:
These seizures change how people think, feel, or experience things. They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language. They may suddenly feel emotions like fear, depression, or happiness with no outside reason. Some may feel as though they are outside their body or may have feelings of déja vu ("I've been through this before") or jamais vu ("This is new to me"— even though the setting is really familiar).

I get all the stuff that I highlited in bold above. I would suggest making a list of symptoms you get and give it to your dr. I hate when drs dont listen to the patients!

 

[oclare1]

I don't know the right words to say how it makes me feel after reading everyone's posts. I've never talked to anyone who experiences anything like me. It does feel good to know I'm not alone but sad because I would like to help everyone. I should be working on a mid term right now but my brain wasn't complying.

 

[petero]

i hope someone out there can relate to this

well nearly every day ALL day i have like a aura or warning but nothing happens it just stays there all day.... its like confusion, lights seem to bright, twitching sometimes only small, just a feeling like im going to have a seizure

i do have epilsey and it only came back after 4 years of not having seizures but ive had that aura type thing for years but its getting worse i dont know how to explain it to doctors!!
I dunno what to do anymore i try explaining to docs etc but no1 helps and all my tests always normal... i just cant live like it anymore

hey HoB
I hate myoclonic tics. It feels like someone tapping my arm at times and with my moods I could think it's anything from a ghost to a posthypnotic suggestion from someone who has been giving me seizures all along to control my mind.
Who the * is going to understand these things? People on this forum do without much ado. So I ask questions and read the info on here and it can help me a lot. Reading Endless's post underneath your question brought me some peace of mind even.
It's an ongoing thing. Worry itself can be a sign of an aura. If things bother you (lights, etc) it may be a sign to just lay down in the dark for a while.
And eat more steamed veggies

 

[RockerMama]

i hope someone out there can relate to this

well nearly every day ALL day i have like a aura or warning but nothing happens it just stays there all day.... its like confusion, lights seem to bright, twitching sometimes only small, just a feeling like im going to have a seizure

i do have epilsey and it only came back after 4 years of not having seizures but ive had that aura type thing for years but its getting worse i dont know how to explain it to doctors!!
I dunno what to do anymore i try explaining to docs etc but no1 helps and all my tests always normal... i just cant live like it anymore

Welcome! My daughter, who is 6, has epilepsy that are almost entirely "auras". But they are actually seizures. When we tried to explain it to her Dr, she said it was most likely migraines or maybe mental illness. Yeah. So we went to the pediatric neurologist who said she was lying and should see a therapist since it was obviously behavioral. Yeah, again. FINALLY we found a good Dr, who after reading the spreadsheet we kept, right away said down the line her symptoms were those of Temporal Lobe Epilepsy.

 

[oclare1]

I wrote for the first time this morning and stated I should be working on my mid term well I have been experiencing the worst vision problems and what my son calls sap hand. Try explaining sap hand to your doctor. The first time I felt this I kept trying to wash my hand to get the sticky stuff off. I now know that this is just another one of those unexplainable features of this condition. Before I was officially diagnosed in 1996 I was told I was having panic attacks so I went to therapy for a year. My whatever they were did not improve so I saw a neurologists, who immediately said I had all the classic symptoms so she orderd an MRI which showed either low grade glioma or temporal mesial sclerosis. I had a right temporal lobetomy in 1999. It 's been a hard ride as I think you all know.

 

[MaeDae]

my brain wont comply!

I don't know the right words to say how it makes me feel after reading everyone's posts. I've never talked to anyone who experiences anything like me. It does feel good to know I'm not alone but sad because I would like to help everyone. I should be working on a mid term right now but my brain wasn't complying.

Same here, everyday I find it harder to stay focused. I will admit some days are better than others. I cant get simple task done hardly. I use to be able to reconcile 3 bank accounts at one time, now it takes a week to just input the data. Then I have to go back and check for mistakes, and believe me, I find many. I read some post/dicussions over and over, just trying to understand. When I start having the strange muscle sensations, I stop what Im doing and try focusing on it so that I am able to tell my doctor what I experienced. Like right now, I've been experiencing some muscle stiffness on on the left side, arm and hand and fingers. Feels like a charlie horse stuck at a caution light. But, must remember the dancing lights came first. Now getting a headache. I just wanted to comment on "my brain wasn't complying". I dont hear or havent read many others mentioning this, at least I dont remember reading it.

 

[MaeDae]

I can relate to having to explain the un-explainable. It makes you feel crazy. Im holding on also. I have yet to be diagnosed. Sometime I pray that it is a seizure disorder (the lesser evil of the two for me anyway), Im absolutely terrified of having another aneurysm/stroke. I get scared to death when ever I have an episode of whatever. I try to remember every little detail that happened before I had my aneurysm and I compare them to what I am experiencing now. So, thank you for your post, it has strengthend me, I am not crazy, no matter what the dr's think, no matter what my family wont say. I pray you will find the answers, the help, the support and whatever else you stand in need of. I hope you feel better soon.