Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Please, I just need someone to talk to :(

Mon, 08/11/2014 - 07:13

I just want to hear from other people about this as I have been brushed off by doctors and don't know what to do.  Sorry, it's long :(

In early July I went to the ED.  I had been at work and I didn't feel right all of a sudden.  I felt really dizzy and everything seemed very surreal.  While the nurse was taking obs, I started seizing!  I have never seized before.  I remember each one of my hands twitched and then...boom.  My body went rigid and I was shaking violently.  In the space of 7 hours, I had 26 of these episodes.  I didn't lose consciousness but I couldn't direct where my eyes went, I couldn't speak and I wasn't fully aware of what was happening (didn't notice a heap of people suddenly appear in the room.)  I had blood and urine tests done, nothing showed up but they refused any head scans or EEGs  because it wasn't a grand mal.  I was given valium but it didn't touch the seizures or the twitching.  Got sent up to observation and had the doctor there accuse me of malingering, told me it was all in my head and to cut it out.  I was gutted, I am not one for being the centre of attention, I was really scared and this cow was calling my a liar?

 

I left the hospital, utterly furious and she didn't even try to stop me.  My Dad picked me up from my place to take me to his, he was on leave and could keep an eye on me.  By the time we got to my hometown, I couldn't walk properly and my speech was affected, my body was twitching really bad.  Got taken to a new hospital, had another seizure (in front of my Dad).  This one was the worst.  I was told it lasted two minutes, I remember bits of it but I don't remember them cutting my tank top and bra off (if I had been "faking" then I would have come up swinging at this point, I am very shy), I don't remember them putting a cannula in each arm and I don't remember being moved from acute to resus.  I was given Madazolam (sp?) and Phenytoin, the seizures stopped.  I was admitted for observation, I was still ataxic but the seizures had stopped.  They did an MRI (clear) but no EEG!  The doctors wrote it off as psuedoseizures but I've looked into them, they don't make sense!  I'm not stressed, I am currently very content with my life!

 

They couldn't find anything wrong, so they released me.  I had to go to my GP to get a referral to a neurologist (and the appointment isn't for another 3 weeks!)  I have had more seizures like the ones in hospital.  I had two in one night in my sleep, I woke up with my spine trying to bend in half.  I still don't feel right at times, I feel like the front of my brain is buzzing sometimes, I feel very spaced out, I have twitches, the corner of my mouth will tense up, like I'm sneering and sometimes I even feel like my teeth are itchy!  My lips feel numb a lot and I find myself chewing them.  I am just feeling very out of sorts sometimes, last night my brain felt like it was getting sucked down a plug hole.

 Dad told me my body goes rigid straight, violent shaking but I don't thrash or make any noise.  My eyes rolled into the back of my head but I didn't bite my tongue, drool or wet myself (hence the doctors not caring because it isn't a grand mal)

 

Can anyone give me any advice?  I am impatient to get this sorted so I can drive again!  I have a new car that I can't drive!  And I am scared of going to this neurologist and she doesn't take me seriously either.  What if she brushes me off too?

Comments

EEG does not rule out

Submitted by Anonymous on Mon, 2014-08-11 - 10:45
EEG does not rule out seizures. Some seizures don't show up on standard  EEG. Many people with epilepsy have many clear EEGs (have read story of a person who only saw the intracranial EEG show something as they were just too deep). Repeated EEGs and longer EEGs increase the chance they see something helpful.

I feel for you and what you

Submitted by Anonymous on Mon, 2014-08-11 - 10:50
I feel for you and what you went thru should not have happened at least here in the states. Generally if you go to the ER then you aren't getting the care needed. I am not saying they don't care but unless they see you in a seizure they don't know what to do. They fix broken bones aor have a person there for heart attacks But something like a seizure they can be baffeled. There are 40+ types of seizures in epilepsy alone. Then there are other forms of seizures. Like the one that comes from a medication. Or Diabeties. You posted you had 26 siezures in 7 hours... That could be considered status epilepticus which does need to be looked into by a neurologist. At one time I was in status and was having 40 seizures an hour. So I do know your tired after seizures of any kind.Biting your tongue..... They do need to look at that closer. In most seizures where they say the person bites their tongue generally the tongue is between the teeth when your head hits the wall or floor. I needed 32 stiches in my tongue and cheek because of a fall off a ladder. In that fall I hit the steel rail on a bunk bed which knocked out 4 teeth and my tongus and cheek was between my teeth when I slamed into the rail. That didn't feel good at the age of 7.If yo uhave a referal and are still having a lot of seizures you might call that doc and discuss the issue with him or his office and by doing that they might be able to move you in sooner.As far as thinking this neurologist will not take you serious you might be surprised. There are some doctors who may be pill pushers which means they want you in and out without really treating your issues. Oh not all seizures look alike or are the same for each person. The things you read in the types of seizures is general not everything in tha list of things that happen and in some cases you can add more.I hope this helps and you get the assistance you need. Please come back and let us know how things are going

I feel for you and what you

Submitted by Anonymous on Mon, 2014-08-11 - 10:56
I feel for you and what you went thru should not have happened at least here in the states. Generally if you go to the ER then you aren't getting the care needed. I am not saying they don't care but unless they see you in a seizure they don't know what to do. They fix broken bones aor have a person there for heart attacks But something like a seizure they can be baffeled. There are 40+ types of seizures in epilepsy alone. Then there are other forms of seizures. Like the one that comes from a medication. Or Diabeties. You posted you had 26 siezures in 7 hours... That could be considered status epilepticus which does need to be looked into by a neurologist. At one time I was in status and was having 40 seizures an hour. So I do know your tired after seizures of any kind.Biting your tongue..... They do need to look at that closer. In most seizures where they say the person bites their tongue generally the tongue is between the teeth when your head hits the wall or floor. I needed 32 stiches in my tongue and cheek because of a fall off a ladder. In that fall I hit the steel rail on a bunk bed which knocked out 4 teeth and my tongus and cheek was between my teeth when I slamed into the rail. That didn't feel good at the age of 7.If yo uhave a referal and are still having a lot of seizures you might call that doc and discuss the issue with him or his office and by doing that they might be able to move you in sooner.As far as thinking this neurologist will not take you serious you might be surprised. There are some doctors who may be pill pushers which means they want you in and out without really treating your issues. Oh not all seizures look alike or are the same for each person. The things you read in the types of seizures is general not everything in tha list of things that happen and in some cases you can add more.I hope this helps and you get the assistance you need. Please come back and let us know how things are going

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.