New here waiting on a "proper diagnosis"

[jfittler]

Hi all, well Im new here I have posted before but thought I should introduce myself now it has been confiremd I am having seizures. I have a few questions and I would be grateful if anyone could help me. I think what I am having is simple partial seizurs, because as fa as I am amware I dont not lose conciousness with them. The one I had last night was a doozy I had just fallen asleep when I woke up to the usually oah oh feeling but this time my left thumb was moving up and down, Im not sure of it was part of the seizure or what because usually when I am having one I do this with my thumb as a calming thing anyway then I felt the whole dizzy spacey like Im going to go out to it feeling then the racing thumping heart came and the hot feeling and that lasted for about 2 to 4 minutes then that settled and along came the tingling in the left arm and then my jaw muscles just started getting alot of pressure in them and kind of like spasming I could open my mouth but it felt weird, this lasted for another minute or two and then the nausea and weird eyes like sort of a few flashing lights and stuff but nothing to bad, in between I had sudden spells of being so tired I couldnt keep my eyes open but I fought it because I knew it would bring on another one, after everything settled down then I feel like I need to go to the toilet but dont.

My questions is what kind of seizure does this sound like, arnt SPS only supposed to last up to 2 minutes. Is this going to kill me cause the whole heart thing makes me feel like I am going to die. I am so scared during these episodes Im scared its going to progresse into somthing worse or I am going to die.

We dont know why I am having these, they started in April but only as heart racing, dizziness and epigastric uprising with hot flushes, about a month after that it progressed to include elecrtic shock sensations, tingling which started in the right side of my body but now can come in either side or will come in just my arms. I also sometimes get brain freeze. These bad ones only happen when I am falling alseep, I have had a few wake me up later in the night on occasion but mostly it occurs when I am just falling alseep or have just fallen asleep??? Anyone else have this or a reason why this would happen, Im scared to sleep now which isnt making life any easier.

I havent been able to figure out a reason for these starting although I have noticed that sometimes when I move my head in certain positions and my neck gets all weird I feel like I am having slight SPS like tingling in the buttocks, privates and leg or I will feel like all the muscles in my legs are cramping, or get brain freeze, I get little things like that that dont last to long during the day but nothign as bad as the night ones.

I am waiting on results from a sleep deprived eeg which I doubt will show anything, im scared is this causing brain damage? Is it going to get worse? Sorry for my big post and whine but I just need some advive/help/friend.

I actually have 2 daughters witg inheriated epilepsy and my husnband had it until he was 20, my son is okay but I dont think he has some sort of seizures as sometimes he says things look really far away and then he gets on with it he also wakes up in a cold sweat shaking and crying very scared calling for his dad he is aware but I just find it weird so Im not sure. During th day I just randonly get an arm or arms or leg that will fall asleep?????

Julie

 

[Nakamova]

Hi Julie, welcome (officially) to CWE!

Did your neurologist confirm your seizures disorder with an EEG, and/or based on your symptoms? He/she should be able to tell you what kind of seizures you are having. Simple partials does seem like a good bet, if as you say you are remaining conscious throughout.

Many people experience heart racing and temperatures changes with their seizures -- this may feel pretty scary, but doesn't necessarily indicate any more severe health problems. It's unlikely that it the seizures are causing brain damage too -- your husband should be able to reassure you on this count. Do mention your symptoms to your doc so that he/she can rule out cardiac issues.

Your symptoms may be related to the vagus nerve (which plays a role in epilepsy as well as other disorders). The vagus nerve connects the stomach and the heart . It can send out signals to your heart if the stomach or esophagus are irritated (as with the acid reflux/epigastric rising you mention). The heart racing sensation (tachycardia) can happen if you eat foods that causes acid reflux. When you are just falling asleep, this can also cause reflux (due to the change in your posture), a possible reason why you may be experiencing symptoms at night. On the off-chance this exacerbating your symptoms, try avoiding foods that cause acid reflux, eat small meals, don't eat within 3 hours of bedtime, and sleep with your head supported in such a way as to keep your esophagus above your stomach (some people raise the head of the bed or use a wedge pillow).

Have you had a sleep study, in addition to the sleep-deprived EEG? That might show any other nighttime issues that are contributing to your symptoms. If you are not sleeping properly that can definitely make things worse (fatigue is the #1 seizure trigger).

Your son may also be having sleep issues or related anxiety. For his piece of mind (and yours), set up an appointment with his doc to discuss what's going on.

Let us know what the sleep-deprived EEG shows.

 

[crazychick]

i have the same problem, my seizures are night i was diagnosed with anxiety as i am a terrible worrier, i get the being so tired thing when you fall asleep you wake but jump up because you have getten a shock i dno why i get a shock. i also get the hot flushes and the tingling. i knw how u feel i am scared to sleep sometimes because i have no recognition of my seizures my dad is the one who witnessed them, its so scary its like a bit of your life happens but you got no idea of it, after a seizure i wake up with a headache bruised tongue and sleep most of the day afterwards. hope this helps a bit

 

[deeds]

HELP..... I need to have a seizure soon

:brain::rose:I have seizures that are 100% stress and panic induced and seizures that are 100% epileptic in nature. Yes, many of us have both types although most doctors love to tell patients that they have NON epileptic seizures. Having any kind of seizure and living that way... day in and day out. Yes, that can be very stressful indeed.
I tried to s l o w l y wean myself off Dilantin and after 3 weeks started to go into withdrawal... not pretty.
Now I have a real problem and I would like to know how many of you have had this experience. I live in Canada and having given up on the state of our medical system I have entrusted my brainwaves to a Comprehensive Epilepsy Centre in the U.S.A.
So, here is the problem, I am in past the midpoint of a 72 hour ambulatory eeg. It's fun but I have not had any seizures and tomorrow am the electrodes are coming off. Why cant we have a seizure when we want one?
Any helpful hints would be much appreciated as I am running out of time.......
Thank you?

 

[Nakamova]

Do you know your triggers? For me, I think fatigue, low blood sugar, and aspartame may play roles. So I would stay up all night and only drink diet sodas to try and bring on a seizure.

 

[Endless]

Hi, Julie,

Welcome to the forum!

The heartbeat, nausea, flushing could be a type of autonomic seizure. This it can be postictal (after a seizure),and interictal (inbetween seizures) in which case it could last longer than the usual "under 5 minutes". Here are some articles. Don't let the talk of SUDEP scare you. It only happens in 1 in 1000 people with epilepsy.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC531654/

http://emedicine.medscape.com/article/1186872-overview

http://www.epilepsy.com/epilepsy/seizure_simplepartial


It could also be a sleep disorder, acid reflux, or a panic attack. I agree that a sleep study is a very, very good idea. Sometimes we have more than one problem layered on top of each other and it needs to get straightened out. Sleep apnea can cause seizures, and seizures can cause sleep apnea. A sleep study would help see if this is a factor for you or not.

 

[davidmc]

:brain::rose:I have seizures that are 100% stress and panic induced and seizures that are 100% epileptic in nature. Yes, many of us have both types although most doctors love to tell patients that they have NON epileptic seizures. Having any kind of seizure and living that way... day in and day out. Yes, that can be very stressful indeed.
I tried to s l o w l y wean myself off Dilantin and after 3 weeks started to go into withdrawal... not pretty.
Now I have a real problem and I would like to know how many of you have had this experience. I live in Canada and having given up on the state of our medical system I have entrusted my brainwaves to a Comprehensive Epilepsy Centre in the U.S.A.
So, here is the problem, I am in past the midpoint of a 72 hour ambulatory eeg. It's fun but I have not had any seizures and tomorrow am the electrodes are coming off. Why cant we have a seizure when we want one?
Any helpful hints would be much appreciated as I am running out of time.......
Thank you?

I'm actually having a 72 hour ambulatory EEG in November. One of my triggers is diet drinks, and other stuff with artificial sweeteners in.
I have had a couple of EEG tests though and nothing showed up on them, apart from generalised slow wave activity.

 

[deeds]

The not so busy brain.....

It feels so silly that I have allowed a few days of seizure freedom make me wonder how on earth this has happened.
They gave me a sheet of paper that says "EVENT LOG"
It is still blank. I have even entertained the idea of leaving these electrodes on for another day. I know for sure that there is no technician at the hospital tomorrow so I have to remove them myself. Unfortunately this device may be scheduled to go to another patient. Not only that how long can 2 AA batteries last?
Also, I am all alone in a hotel room in a big city so fooling around with meds could be problematic. Obviously I could stay an extra day if need be, maybe I should just go and buy some more batteries?
I figure if I stress enough something manageable ought to happen?
Otherwise, I will have some perfectly beautiful inter-ictal and ictal memories for the nice people here in America.
Thanks to everybody for your suggestions!

P.S They use a humane type of adhesive here! None of that collodion.....
This stuff washes away with warm water!

Still open to ideas, hyperventilation didn't work, perhaps a strobe light.......

 

[jfittler]

I dont have a definate dx yet, I have had a sleep deprived eeg but no results yet, although Im sure it will come back normal as I didnt have any symptoms during it. I did have an eeg a few yrs back that showed sharp waves in my frontal lobe with slow waves or something to that affect, but the neuro at the time said it was from my migraines, which he diagnosied me with as being silent migraines to which I had no pain with, I know I have had teo of thses before but I wasnt so sure that my other episodes were these or if he was just passing me off. I do have a very back neck with alot of nerve issues in it but never any symptoms like this, I dont think these kinds of symptoms can come from a neck???

I had another one last night, although not as severe it started with a weird feeling in my head like woozy pass out feeling, then I got the hot flush, the weird tightness tingling in my head, the my left side got tingly/numbish. My heart didnt have the racing horrible feeling, but Im not sure if I do pass out or because it has woken me up and cause Im so tired I just drop back to sleep I also noticed that when it was dissapating I had pain in the back of my head it only lasted 5 to 10 minutes though, anyway I woke again covered in sweat with just the tingling left , needless to say I stayed awake for a few hrs after this one.

Today I have been having little weird things like the right side of my jaw has this weird sensation in itlike a tingling odd sensation like when your mouth is watering but its only on the right side and it has been going on for about 2 hrs, also vision issues, blurry right eye, on and off in the other eye,weird buzzing electric sensation in right side of head. Hard to coordinate fingers and hands. I also have bad cramps mainly in legs but in arms and fingers to at times.

I have deicded to go gluten free and see if that helps with my sinus issues maybe it will help with whatever the hell is wrong with me now.

Is it normal for SPS to vary in symptoms so much, and to change sides or go from one side to just both arms??? Im getting a bit terrified as there coming nearly every night and day of thats what Im having and I dont know why or more to the point Im scared of what this is going to progress into.

I seen to have autonomous and sensorary symptoms, do these come from the frontal lobe. Thanks for th links endless, I know you told be not to freak about the sued but I did lol but i did when my grls got dx to!!
Thanks for all your replies and helpful advice I really appreciate it at the moment.

xJulie