Just to say hiiiii :) newbie here

[holly]

First of all I just wanted to say hi to everyone who is and has gone through the fear of the unknown and commend you all in your outreach to others such as myself Thank you.
sorry in advance for the lengthy first post but I truly am lost and im scared
and im also sorry if im in the wrong area for posting this (of which ended up being an essay not a hi im here)
well, a little from me is I haven't been diagnosed with epilepsy, but am scared out of my mind that I am experiencing some form of seizure, I believe to be temporal lobe seizures, and the more I have read the more I believe my "gut" that this is a very possible case of TLE I think the abbreviation is, I know that there is no one but the doctors that can confirm this for me but do any of you feel that in explaining your feelings/experiences that you are being categorized as nutz?

the more I have read the more I have realized that this isn't what I thought was just a recent thing (3years ago I had my first notable adult"aura/state") I actually believe I have had some form of seizure from childhood, I remember telling my mother as a child that mommy get the spots out of my eyes and literally screaming out of frustration that I couldn't see (except these spots or sometimes what seemed like rain drops on glass) and then be fine...
I was a very hyper, fearless, tomboy. but did suffer with migraines at about 5 and connected it to foods I ate such as cheese?! cant remember more than that, I also remember some teachers in my high school yelling at me to pay attention and I had no clue what they were talking about they always said my head was in the clouds and I used to cry all the time when I got home because I didn't understand my lessons and I was the "bad kid" truth is I was stubborn and hated admitting that I didn't understand nor did I know why I didn't understand ... coincidence? probably but got me thinking.

now I am 32 (almost) and over the past 3 years I have had a very turbulent life, stress is extremely high for me but I always have had high stress due to having hyper focus, a perfect way to describe me on a daily basis is I am like the high performance car just waiting to wreck, ... im having I believe temporal lobe seizures and at first I felt like I was floating or weightless, and would then get a visual of something familiar deja vu sensation or dream state, and a smell I can not explain, and as I come back to I have this feeling like all the blood from my head and arms is rushing back into my veins its almost like an annoying cold tingling feeling and I also feel like I am having a bout of stomach flu that's the worst bit but im never actually vomiting just nauseous and I always feel like im falling to the left?? I've always managed to get on the ground and don't think I ever actually fully lost consciousness but I cant remember in all honesty.

I am alarmed by this now because 3 nights ago I had it 4 times in a row (over 2 hours) and I am freaked out by it, and true hyper focus style, I have been reading about my symptoms and every time its coming up with TLE, im sure most of you have had the same experiences as me, and I thank you in advance for reply's, I now don't feel so lonely im just scared im going to have a grand mal in front of my kids or in the street....... please any advice id truly appreciate
thank you again for taking the time to read this distress letter

Holly

I do have a Drs apt, but its not until the 5th and ever since this night I feel really "off" like something is going to happen again scared senseless

 

[Fedup]

holly

It is only natural to feel scared, I am not saying you are wrong or anything like that but are you worried about something that might happen or something that will happen. I am no doctor so I am even going to attempt and say you have this or something else, as you said only a doctor can tell you so why worry about something you do not know will happen and self diagnoses is not a good idea. Reading is fine and getting information is good but this does not mean I get to say whats wrong with me, it means I have more information to try and find out what is wrong, I could be right but its wait and see. Holly life is anything but fair to anyone of us and worrying about what might be is pointless because we have no idea what will happen, so worry about what you know will happen.

 

[holly]

thank you fedup,

you are 100% right, I am scared senseless because I have this feeling that it is about to happen again, I just feel off and im scared that it "if" it is epilepsy could just be warnings of a full blown drop seizure

thank you again
Holly

 

[Cint]

Hi Holly and welcome to CWE,

No need to apologize. You have to "spill your guts" once in awhile to feel better about the situation. And go with your 'gut' feeling. If you think something is off, then more than likely you are correct. From what you have described, it does sound like TLE . Those deju vu feelings and smells you cannot explain sound like 'auras' right before the seizure. Just make sure you keep getting yourself to a safe place every time you feel these sensations overcome you. Try to reduce the stress in your life as stress can/does bring on seizures. Write down and keep an ongoing list of these symptoms to show the dr. Hang in there. You are not alone.

 

[Fedup]

Holly

Just because you have epilepsy does not mean you are going to get a full blown drop seizure. There are thousands of different types of epilepsy and thousands of different ways they effect you. They effect each one of us differently and this does not mean you have a Grand Mal seizure, sorry its called tonic clonic these days.

 

[valeriedl]

Spill your guts out as much as you want. There's been times that I've wrote have a book on here. No one's going to complain.

As fed up said don't worry about something that you don't know for sure that it is. Recently I woke up with my eyes puffed up so bad that I had trouble keeping them open. I had a horrible rash all over my body and it was pretty itchy. Skin problems run very bad in my family so I was scared to death of what it could be. I went to the dermatologist and found out it was only poison ivy. That wasn't great to hear but it was a lot better than what I was afraid that it could have been.

What you are explaining does sound like a lot of things that happen to me when I have a seizure. I'll get that deja vu feeling, light headed and my lips will tingle which most is called an aura. If you feel that then sit down somewhere or as Cint said get somewhere safe where you can't hurt yourself.

Also as she said keep a diary of when, how long and what you did when these things happen. This will help the dr understand more of what's going on and answer questions that he asks you better.

During most of my seizures I'll just stare off into nowhere and won't know anything that's going on around me. I don't remember anything that happened before, during and after the seizure. Sometimes I'll get up and do things that I don't know I'm doing.

Stress is a HUGE seizure trigger for me. So try as much as you can not to get stressed out over things as best you can.

 

[Nakamova]

Hi holly, welcome!

The things you describe could be seizure-related, though some of the symptoms overlap with migraine as well. The best thing to do is make a list of any and all unusual episodes you've experienced, both recently and in the past, so that the doc will have a sense of what's been going on, and whether it's changing in any way. It might also help you identify any patterns or triggers.

Let your doctor know that you would like to be put on the cancellation list, in case an appointment slot opens up sooner. And hang in there!

Best,
Nakamova

 

[holly]

Holly

Just because you have epilepsy does not mean you are going to get a full blown drop seizure. There are thousands of different types of epilepsy and thousands of different ways they effect you. They effect each one of us differently and this does not mean you have a Grand Mal seizure, sorry its called tonic clonic these days.

Fedup,

I appreciate your comments I do, however I haven't been diagnosed yet, and as my information finding and my Dr suggests there is a strong possibility that it is in fact a form of epilepsy, I know there are hundreds of different types and i also know i may not ever experience a "tonic clonic" but from my understanding and please feel free to correct me if i am wrong, the sensation i am feeling is also a warning of seizure and many people experience this before a "TC" I am scared and am looking for advice support and just a friendly environment to have my questions answered as im new to this and im trying to get my head around all of this!
hence me joining this support forum!
i came here to share my experience and feelings and possibly full out vent with people that i felt would be understanding of what i am going through beit epilepsy or not on diagnosis if it turns out to be something else then i have this experience to share with future new members who are new scared and looking for friends,
you however are not coming across as welcoming to a new member nor supportive of the fact that yes i am concerned about the sudden increase in my symptoms this week i have had 5! and a lingering feeling that its about to happen again i don't enjoy this sensation at all yes im like a frightened child sorry!
last time i remember having "a turn" was a year ago so in all fairness im pretty upset
and in all honesty im not trying to be mean and im sorry if im coming across mean, im just scared

 

[holly]

Hi holly, welcome!

The things you describe could be seizure-related, though some of the symptoms overlap with migraine as well. The best thing to do is make a list of any and all unusual episodes you've experienced, both recently and in the past, so that the doc will have a sense of what's been going on, and whether it's changing in any way. It might also help you identify any patterns or triggers.

Let your doctor know that you would like to be put on the cancellation list, in case an appointment slot opens up sooner. And hang in there!

Best,
Nakamova

thank you Nakamova, im trying to put together a list of "turns" and im also trying to figure out exactly how long i have had these symptoms, before i realized that yes it really needs to get checked out.... i really appreciate all the feed back thank you, i hate having hyperfocus because i do tend to over load on information but its like now its a need to know basis i need to know when this Possibly could have started before i was old enough to understand?!!? and trying to remember things isn't exactly easy i may have had then and not known ... frustraited

 

[holly]

also very emotional at the moment i am tending to get my back up over anything ... i guess its just the stress and anxt of not knowing for sure ..... its difficult not to "worry" im sorry if at any time i come across as a brat im sorry

 

[Nakamova]

Hi holly --

I'm very sure fedup was trying to reassure you and give you hope about what might happen, and not being dismissive of your symptoms or concerns. Epilepsy is unpredictable and idiosyncratic, so unfortunately it's difficult to know what might happen in any given scenario. It is worrisome that there's been an escalation in your symptoms, and it's good that you've made it a priority to see your doc. If your doctor refers you to a neurologist, and there's additional delay as a result, you might want to ask about getting a small prescription of ativan or valium to tide you over in the short-term -- it can help with partial seizures (as well as any anxiety those seizures may be causing).

 

[holly]

Nakamova again thank you, I also am sure Fedup doesn't mean to come across to me in that manner, I know that reading someone's text its difficult to know how they are saying things with out hearing a voice, so if im being touchy I truly am sorry, I've been "exploring" everything I know its not the best idea, but I am desperately trying to find anything and everything that "MAY" be a cause of my symptoms and how long I may have had mild symptoms that I just brushed off since childhood, epilepsy or not.

im sure ill be admitted to a psych ward before im done thank you hyper focus!
but all joking aside, does anyone please have advise as to how can I determine the following...

how do I know if I have had them in my sleep? I have experienced falling feeling and also like a looking in on myself dreams where im watching myself fall off of something usually when im just falling asleep sudden jerking that is more annoying than anything but wakes me out of my sleep and can on occasion happen 3-4+ times in a row, or waking up, and when I wake up suddenly and literally jerk upright, my heart is racing, sweating, then I burst into tears and sometimes I cant shake this feeling all day like the dream I cant figure if its was real even tho clearly it wasn't.... that is probably just be me being a weirdo tho haha.

what notable life events should I tell my Dr about that could be a contributing factor accidents, etc?

Another sensation I have had is during the "aura" when my vision goes I get a super high pitched buss sound and everything goes like shockingly bright then I start coming round gaining back my vision and reality not the "dream state" again this lasts maybe a few seconds along with the smell, and deja vu feeling, and the dream, sometimes I hear what the figures are saying but cant make out the words more like mumbles, and im very anxious after and just beat. I have had a few different kinds of what I feel to be an aura
UGH
I am so confused right now, I want to make sure I am thorough so not to miss anything and get the correct diagnosis either way, im sure everyone here at some point has felt this distressing helplessness of one I am not accustomed to, have always been extremely self sufficient and independent. admitting I need help is hard for me and also stressful due to the nagging feeling that im failing something .... ridiculous I know

the best thing I have is a little time before my appointment to gain or rather gather everything that I can remember to present to him,

omg im rambling im sorry ....

please if any of you have prepared for your Dr appointments id love to hear what may help me get to the bottom of all of this

 

[Fedup]

Whether or not you have epilepsy is irreverent right now as you see thing which imply its a possibility. Holly I am not being dismissive of you or making little of your symptoms and I am sorry you think this but you need to look at another side as well you could be one of the lucky ones who does not have to deal with this on a daily bases. Not everybody gets a warning of a seizure coming on this is not to say it does not happen, the most common thing anybody associates with epilepsy is as you said before " drop seizure" were you fall to the ground, this is not the case Holly. Ok you are scared this I know, you are worried and looking for answers. Holly I would be lying if I said I was not scared mind you not as much about me but what could happen, if you understand. Worry, a big word but in truth what can you or I do about something that could or might happen so why worry live every day and wait for tomorrow to come and hopefully bring sunshine so we can warm ourselves. Looking for answers to questions is a good thing even I do that, its how we use the information that counts, so sit back and stop a minuet have a coffey and understand information can be good or bad, you can use that information to drive you up the wall with worry, which does you no good or your health or you can use it to help yourself.

I hope it turns out to be something else because getting your head around this is no fun nor easy. Holly you are not being mean or coming across mean just a very scared person, one who needs to stop thinking and rest for for a minuet before you give yourself a heart attack. Nobody said you enjoy this sensation or want it so stop being sorry and frightened child. Be a frightened and concerned adult who is going to ask questions till you get to the bottom of this. Sorry if you think I was/am unwelcoming that is not my intention.

Nakamova thank you for your words of wisdom.

 

[Nakamova]

how do I know if I have had them in my sleep?

It helps if you have someone witness what happens. Otherwise you have to go by clues of what you remember and how you feel when you wake up. Don't worry too much about the nocturnal ones right now -- your daytime symptoms will be enough to start with, and if necessary a neuro can have you do an overnight sleep study (complete with EEG) to see if there's seizure activity interrupting your sleep.

The sensory disturbances (distorted vision, phantom sounds and smells) are all potential seizure symptoms, so make a note of them. Below is a list of symptoms associated with partial seizures, so if anything rings a bell, add it to the info you present to the doc.

Simple Partials can take the form of:

Motor seizures:
-- Change in muscle activity.
-- Abnormal movements like jerking of a finger or stiffening of part of the body. Can happen on one or both sides, or spread from one to the other.
-- Muscle weakness (can even affect speech)
-- Laughter or automatic hand movements. (you may or may not be aware of these movements)

Sensory seizures

-- Phantom smells, tastes
-- Unusual/phantom sounds: clicking, ringing, or a person's voice
-- Sensation of "pins and needles" or numbness or pain.
-- Sensation of floating or spinning in space
-- Visual hallucinations
-- Visual/Aural illusions -- distortions in depth perception, "Alice in Wonderland syndrome", misheard sounds
-- Flashing lights or patterns in visual field (similar to migraine aura)

Autonomic seizures:
-- Changes in area of the nervous system that automatically controls bodily functions
-- Strange or unpleasant sensations in the stomach, chest, or head (nausea, dread, dizziness, etc.)
-- Changes in heart rate or breathing; sweating; or goose bumps

Psychic seizures:
Changes to how you think, feel, or experience things.
-- Problems with memory, speaking, word-finding, comprehension
-- Sudden unexplained feelings of fear, depression, or happiness
-- Out-of-body sensations, déja vu or jamais vu.

I know it would be great to find the primary cause of your systems, but of for most of us with epilepsy that remains unknown. What can be helpful is identifying secondary causes -- things that lower your seizure threshold from time to time and push you over the edge. The #1 trigger is fatigue, but just about any stressor can potentially be triggering: Foods (gluten, cheese, red wine, caffeine) or additives (MSG, aspartame), metabolic/digestive issues (nutritional imbalance or deficiency, low blood sugar, dehydration), hormonal fluctuations (thyroid, estrogen), environmental triggers (dappled or flashing lights, sudden sounds, climate changes), and emotional stress.

the nagging feeling that im failing something

Try and let go of this -- the best approach is gather information (as you are doing), and be proactive about asking for help and support. It feels lousy when are minds and/or our bodies betray us, and it's important to find ways to feel better, particularly be reducing stress and making the most of things that provide comfort and stability. I realize that you don't have a diagnosis yet, but you may find this link helpful:http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[Nakamova]

You might find these CWE links helpful for preparing for your appointment:
http://www.coping-with-epilepsy.com/forums/f23/neurology-appointment-pointers-20954/
http://www.coping-with-epilepsy.com...-my-neurology-appointment-advice-please-6161/
http://www.coping-with-epilepsy.com/forums/f23/back-my-first-ever-visit-neurologist-16597/

 

[Cint]

Holly,

I've had seizures in my sleep, both TC's and CP's. I definitely know when the TC's happen because of the bite on my tongue or side of my mouth, plus my body feels like it was hit my a semi. But when I have a CP in my sleep, I wake with the feeling of an ongoing dream, things don't seem right. Then I realize it wasn't a dream, but a seizure. I just feel different than usual.

Some notable things to tell your dr. about your life are: illnesses like meningitis, encephalitis, any head injuries, child abuse, spouse abuse, etc. Do you have any other hormonal issues like hypothyroid? Diabetes?

And check out this website. It describes TLE and maybe you can present it to your dr:
http://www.epilepsy.com/epilepsy/epilepsy_temporallobe

 

[holly]

Whether or not you have epilepsy is irreverent right now as you see thing which imply its a possibility. Holly I am not being dismissive of you or making little of your symptoms and I am sorry you think this but you need to look at another side as well you could be one of the lucky ones who does not have to deal with this on a daily bases. Not everybody gets a warning of a seizure coming on this is not to say it does not happen, the most common thing anybody associates with epilepsy is as you said before " drop seizure" were you fall to the ground, this is not the case Holly. Ok you are scared this I know, you are worried and looking for answers. Holly I would be lying if I said I was not scared mind you not as much about me but what could happen, if you understand. Worry, a big word but in truth what can you or I do about something that could or might happen so why worry live every day and wait for tomorrow to come and hopefully bring sunshine so we can warm ourselves. Looking for answers to questions is a good thing even I do that, its how we use the information that counts, so sit back and stop a minuet have a coffey and understand information can be good or bad, you can use that information to drive you up the wall with worry, which does you no good or your health or you can use it to help yourself.

I hope it turns out to be something else because getting your head around this is no fun nor easy. Holly you are not being mean or coming across mean just a very scared person, one who needs to stop thinking and rest for for a minuet before you give yourself a heart attack. Nobody said you enjoy this sensation or want it so stop being sorry and frightened child. Be a frightened and concerned adult who is going to ask questions till you get to the bottom of this. Sorry if you think I was/am unwelcoming that is not my intention.

Nakamova thank you for your words of wisdom.

/hug start over ..... I do understand what your saying and I thank you for your responses to my post's, the heart attack comment sheesh!! I was also told this could be a cause to the "turns" my Dr said it could be a number of things suspects epilepsy but could be caridio I just want the 5th here already so I can stop going out of my mind .... and I do hope that everything is resolved regardless of outcome I just need to know how to help myself and be prepaired... thank you again

 

[holly]

Holly,

I've had seizures in my sleep, both TC's and CP's. I definitely know when the TC's happen because of the bite on my tongue or side of my mouth, plus my body feels like it was hit my a semi. But when I have a CP in my sleep, I wake with the feeling of an ongoing dream, things don't seem right. Then I realize it wasn't a dream, but a seizure. I just feel different than usual.

Some notable things to tell your dr. about your life are: illnesses like meningitis, encephalitis, any head injuries, child abuse, spouse abuse, etc. Do you have any other hormonal issues like hypothyroid? Diabetes?

And check out this website. It describes TLE and maybe you can present it to your dr:

I often wake up feeling lousy, like im still not fully withit, and this can linger for days especially after having "auras" like the feeling that im just not "Right" or everything feels slightly tingly my senses are off but I don't often remember anything from sleeping, just a little uncomfortable or a wicked head ache when I wake up...
I don't have any of the ailments you listed, although thinking about it I am due my mother nature visit

 

[Fedup]

holly

There is no problem with me and glad you understand, as for how to help yourself and be prepared if you find a way I would appreciate you letting me know.

 

[holly]

holly

There is no problem with me and glad you understand, as for how to help yourself and be prepared if you find a way I would appreciate you letting me know. Other than that just stop and think a second everything could turn out ok.

thank you again.. and sorry I got my back up... defense mechanism I guess you could call it, im sure I will have a billion other questions for everyone, and days where im going to just freak over everything possible and impossible.... I truly am appreciative that you guys are commenting and helping me with your knowledge and guidance that its not all bad even if its scary .... thank you!