fed up with seizures

[doihaveepilepsy]

i am soo fed up with having seizures now, i have tried so hard to stay positive but i just cant seem to do it anymore, i am sick of the constant fear that i have to live with that i am going to have a seizure, i dont get any warning so the likely hood is i injure myself. i had a seizure on thursday nite in my sleep woke up friday morning feeling pretty crap with a headache then i was alone in the house everyone was out at work, i remeber going into the kitchen to make a drink and the next thing i no i was sat on the kitchen floor with blood dripping down my hand, i didnt no what had happened and felt so scared and confused, after a while dunno how long i started to feel "normal" again, i had wet myself which is so embarassing, i got up and there was glass everywhere went and cleaned my hand and head coz that was cut a little bit to and i had two huge lumps one on my forehead rite in the middle and one aboe myleft eye. i then went and got into bed i woke up about siz hours later to find my pillow and face had blood on it and i had wet myself again i felt awful me head was so sore and my body was hurtin all over. i just dont no how much longer i can continue with this happenin to me it just doesnt seem fair, i dont have a diagnosis of epilepsy, drs are not sure what it is yet so i dont take any medication at all to control my seizures. what should i do im so fed up!!

 

[Bee91]

I'm sorry DoIhaveepilepsy!
I'm no doctor, but it sounds like a clear case of epilepsy to me. I know I had to go to quite a few doctors before I got diagnosed with epilepsy also. And I was also getting hurt and losing bladder control.

What kind of tests have you had done to prove whether or not you have epilepsy? How long have you been having seizures? How many seizures have you had? How many doctors have you seen? I think your doctor might need to speed things up if you are getting hurt so often. It's definately not safe!

 

[RobinN]

It sure does sound like you are have seizures and you need to be in contact with a doctor.
There are some good suggestions around the forum for dealing with the fear of seizures.
I hope your research takes you into a positive direction soon.

 

[brain]

Go to the Hospital ER if you do not have
a Neurologist the next time you have a
seizure!

They will assign you a Neurologist or possibility
an Epileptologist (a Neurologist who specializes
in Epilepsy) or possibility even admitting you to
the Neurology Floor if necessary and will take
care of you from that standpoint.

It's too dangerous to go untreated if you are
experiencing all of this and having no Doctor,
you can get hurt or go into a life threatening
situation.

Or if you need to:


FIND A DOCTOR - AESNET & EPILEPSY FOUNDATION

 

[wf]

doihaveepilepsy,
i share sometimes tjose feelings too. Here, you are welcomed to express your feelings.
Welcome to CWE
wendy

 

[Trinity]

It seems pretty clear cut case of seizures to me too but I must say that there are varied reasons why you may experience seizures. I know that meningitis is one, fever is another and i'm sure there are many more I don't know of but the doctors need to quickly rule these out (I had a lumbar puncture to rule out meningitis when I started having seizures) because I know meningitis is serious and I suspect anything else that would cause a seizure would be too.
Once these have been ruled out and they are able to diagnose you with Epilepsy you really do need to be medicated or receive some kind of treatment. Continued seizures can cause brain damage and a major seizure can be life threatening. I know my Dad said that when I was a baby having a seizure I almost died in his arms. It's not something that we like to think about but it is important to be informed, which I guess is why you are here.
I understand your feelings but do try to think positive and believe that there is something that will be able to control your seizures or at least minimise them. I think from what i've read most people receive a certain level of seizure control from treatment and I think it's much less common for one to not get seizure control from any medication (although you may need to try a variety of different ones first). Please correct me if i'm wrong anyone.

 

[doihaveepilepsy]

thanx for all your replys, to answer your questions, i have been having seizures for about 18 months now, i have seen loads of dr's i have lost count just how many i have been taken too hospital loads of times too, and also been admitted about 5-6 times from stays lasting overnight upto 2 weeks on a nurology ward and also been in accident and emergency countless times trough seizures too. dr's just dont no, i was initially diagnosed with epilepsy after having quite a few seizures, and then after the number of seizures i was having increased i was admitted to hospital where i had seizure after seizure (however these seizures were not the same as the ones i am having and have had previously, i didnt no bite my tongue i did not wet myself i dont no how i felt really because i was heavily medicated so thefore i felt pretty crap for my full stay in hospital.
I have lost count how many seizures i have had all that i no is its alot, i can sometimes have upto three in a week. i have had loads of tests done.
i have had 3 eegs two as an outpatient that were for around 30 minutes and one as an inpatient for 48 hours.
my first eeg showed some non-specific slowing, my second one which i had was during a seizure which was normal (hense why drs decided i didnt have epilepsy and i had non-epileptic seizures) although my mum said these seizures were different from all the others. about 3 months ago i had the 48 hour recording that was fine but i didnt have anyseizures while on it.
so they are trying to decide wether i have epileptic and non-epileptic seizures or just non-epileptic seizures. i dont no what to think? although i am not really convinced that it is primarily due to non-epileptic seizures. although i suppose this diagnosis would be alot easier to cope with than the diagnosis of epilepsy (no offence anyone)
i an going to see a new dr at the beginning of feb who specialises in epilepsy i have been refered to him by my neurologist so hopefully he will come up with some answers.
and i no what your saying about the dangers i am so scared that one day i wont wake up from a seizure because i have injured myself badly or stopped breathing, i have had a seizure which i didnt regain contiousness and had to be put on a life support machine surely dr's should agree that what ever is causing these seizures is something to be worried about they just seem to take weeks to do anything and when i do finally get an appointment and think i am getting somewhere, they refer me somewhere else, what they dont see is how much it affects people and their lives i cant drive work or socialise because of these seizures i am 21 years old and i loved my life before these seizures started now its not a life anymore its just an existence.
i am so desperate for answers and help, its totally ruined mylife and i will endup soo depressed if it wasnt for my family i think that i would just give up

 

[RobinN]

It is a difficult diagnosis because they do look the same.
Have you considered therapy, to just get you through this rough period. Perhaps just talking about what you are having to deal with would help your anxiety level, and give you a thread of hope. Just thinking outloud here....

 

[tinasmom]

I am so sorry for everything you are going through and no diagnosis. Hopefully this new doc will help you. When my daughter would have seizures, she would also injure herself and wet herself. One time she walked to my house after a seizure and her glasses were bent and had blood running down her face, she thought she might have walked into a wall. Be persistent in finding a doc that will help you. I've also been told that the diagnosis for Epilepsy is two or more unprovoked seizures. Good luck and keep us updated, you are in my prayers.

 

[doihaveepilepsy]

to be quite honest i would try anything but drs always seem to mention drugs and that is it, when i first when to see the neurologist in october last year he mentioned takin epilepsy medication again which i wasnt too keen on, so i just said that i would wait but i didnt think it would take this long now i am desperate and will try anything that may help.
although i would like to avoid going down the medication route i feel that maybe it is now the only option available to me at thsi time, but i will just have to wait and see what the dr says.

 

[doihaveepilepsy]

this forum is great you are all so supportive and understanding thankyou all for your replys x it really does mean alot to me thankyou

 

[Trinity]

I really can't comment on the various other treatment options out there as i've really only been medicated. I do however think that medication is a great thing and whilst I can't say how effective or ineffective diets and natural/herbal treatments are I know that i've had lots of sucess with my own medication and I won't mess with that. There sure may be side effects but sometimes it is worth it to have the seizure control - of course that depends on the number of seizures you have compared with the type of side effects. For me the side effects are to do with my metabolism and weight gain and I have decided that it is worth it to be on the Epilim and have to work harder at getting and keeping the weight off. I also get tremors as a side effect from both the Epilim and Lamictal but that doesn't usually bother me - it can be a little annoying at times but a small price to pay in the grand scheme

 

[doihaveepilepsy]

i agree, at the minute i would rather put up with the side effects of medication, i just dont want to take epilepsy meds if it isnt actually epilepsy that i have that the only thing that worries me. last time i took epilepsy meds i was taking lamotragine and clobazam and i had a constant headach felt sick alot and slept most of the time too, but i think that was because i hadnt adjusted to the medication properly and also the dose was increased really quickly while i was in hospital, so i think that maybe this made the side effects worse too.

 

[RobinN]

i feel that maybe it is now the only option available to me at this time

.. and I would say otherwise. Of course you might have a wonderful relationship with meds. There is no predicting that. But I would suggest to anyone that was ill, or had a disorder, to truly look at your nutritional intake and see where you might possibly do a better job at it.
You might check out:
http://www.sciencedaily.com/releases/2008/01/080128113325.htm

Just a suggestion.

 

[doihaveepilepsy]

also thought long and hard about the causes of these seizures because they just started for no apparent reason when i was 19 and then they stopped and i didnt have any at all for about 7 months and then they started again. weird!! nothing changed in my life that i can think of i wasnt ill at the time infact i was in excellent health, i was happy and stress free and living my life to the full.
i dont take drugs or smoke i do drink occassionally but not excessive, i usually exercise regularly and my diet is ok.
the only health problem i have is psoriasis (which i dont have at the minute) it has flared up twice in my life once when i was about 9 or 10 and once when i was about 14/15 years old. it was prtty bad when i was 15 and i was given cyclosporin to take (these are drugs which are also given to transplant patients to supress their immune systems) i was thinking that maybe this could have been something to do with it (my mind workin overtime i suppose ha) oh the tablet supressed my immune system so much i got viral meningitis i was in hospital for a week and made a full recovery although i started to experience migraines after this. other than that i am fit and healthy ha

 

[Trinity]

Lamotrigine (Lamictal) hasn't been too good for me either and i've started to wean off it but it's going slowly because i've been having what my neuro described as 'mini seizures' and which I think seem to more specifically be 'myoclonus'. This, I have been told is not a side effect of the medication but a 'fit' or seizure.
The myoclonus in themselves are not too much of a problem - again just a little annoying - but it is when I consider that it's the result of something wrong with my brain and that it's a sign of epileptic activity.

 

[Trinity]

Hmm, I guess it's a possibility the meningitis has something to do with it but i'm no doctor.

 

[doihaveepilepsy]

it was only viral meningitis so it wasnt as bad as the bacterial kind so i dont think that it is the cause either but its a suggestion and something that drs always seem to write on my notes so maybe they think the same thing, there has got to be some cause for them starting it just seemed so weird for them to start when i was 19 when i had never had a seizure before

 

[Bee91]

I rambled...Sorry.

my first eeg showed some non-specific slowing, my second one which i had was during a seizure which was normal (hense why drs decided i didnt have epilepsy and i had non-epileptic seizures) although my mum said these seizures were different from all the others. about 3 months ago i had the 48 hour recording that was fine but i didnt have anyseizures while on it.
so they are trying to decide wether i have epileptic and non-epileptic seizures or just non-epileptic seizures. i dont no what to think? although i am not really convinced that it is primarily due to non-epileptic seizures. although i suppose this diagnosis would be alot easier to cope with than the diagnosis of epilepsy (no offence anyone)
i an going to see a new dr at the beginning of feb who specialises in epilepsy i have been refered to him by my neurologist so hopefully he will come up with some answers.

Your case seems very similar to mine. I have seen several doctors and several specialists. I've seen quite a few neurologists(I've lost count), a neuropsychologist, one epileptiologist, an internal medicine doctor, two pediatricians, ER docs,a cardiologist, 2 psychiatrists, and a psychologist. Every neuologist I've seen except for one has said that I did not have epilepsy. Their diagnosisis (plural form of diagnosis: diagnosises? dianosi? ) were anything from Post Traumatic Stress Disorder, to Psychogenic Non-Epileptic Seizures, Conversion Disorder, Lupus, Micro Valve Prelapse, Syncope, to" just plain crazy and needs to be in a psych hospital":roflmao: (one neuro really did tell me that)

The epileptologist, neuro-psychologist, one pediatrictian (the other we stopped going to) , internal med doc, psychiatrists-he ruled out any mental illness that they thought was ailing me, and psychologist all believed that there was something more going on. They all believed IT WAS EPILEPSY. They had no doubt in their mind. The cardiologist found something out with my heart so we it turns out I did have syncope, but I was also still having seizures.
To make this incredibly too long and boring post a little bit shorter, it turns out I do have epilepsy and brain damage, which apparently caused the syncope. At least that's what my doctor says. (I never had a problem with it until I had seizures)

And I most likey do also have non epileptic seizures. Who knows? You can have both. Just like you said. I believe, a quarter of people with epilepsy also have Non epileptic seizures. (My numbers could be off a little)

What I'm trying to say is, just because an EEG says you don't have epilepsy, doesn't mean it's telling the truth. Just like in my case. My case, 4 EEGs with slight abnormalities but nothing horribly wrong. But because doctors hesitated to do anything, I am stuck with a slow heart rate and low blood pressure, episodes of passing out, and memory loss. All because of epileptic seizures failed to be diagnosed as epileptic seizures. Instead they were diagnosed as harmless PNES and was not treated appropriatly.

Please don't live with the diagnosis of PNES if you think there may be more going on. Because if you are getting hurt as often as you are, there really may be more going on. Because it is easier to cope with.

Good luck with your new doctor. I hope you find some more answers!!!! And sorry I rambled so much!

 

[skillefer]

Hi DoI! Glad to hear from you again. Just wish that it was with some good news. Hmmmm...you talked about a seizure first thing in the morning.....have you ever had your blood sugar levels tested? I ask because some of my seizures have been triggered by low blood sugar. I have to eat 5 times a day and make sure that I eat proteins if I'm eating carbs/sugars/bread etc...Be open to medication. Yes, sometimes they have icky side effects (for me, it was Depakote with weight gain and hair loss) but for some of us, it's necessary. The trick is to find the med or combination of meds that help the most with the least number or severity of side effects. When I was diagnosed, at the age of 3-4, I was put on phenobarbital. I have grand mals, and yes, I've had the delightful *insert sarcasm* experience of wetting myself. But phenobarbital along with depakote did a REALLY good job of controlling my seizures. While you wait for your doctor's appt. all I can do is suggest that you relax. I know...sounds hard and I don't mean it to insult you. The thing is that for alot of us, stress is a major trigger. So is not getting enough sleep. If you have a video camera, I'd suggest you have someone videotape you when you have your next seizure. That way, you can show your doc what you're talking about. Practice some deep breathing, as well as meditation. Cut back on the caffeine if you drink coffee/tea/sodas/energy drinks. I went from 9 cups of coffee a day to 1. It's hard, but doable. If you have an animal in the house like a dog or a cat, think back...did the animals do anything odd when you DID have a seizure that they didn't do otherwise? I had a friends chihuahua that acted weird around me whenever I seized over at their house...as well as cats that would lick my eyelids/back away from me/or try to pin me down on the bed on days when I ended up having seizures. At other times, they didn't do any of those things. Try reading the articles about supplements in the library here. Since I started taking maganesium, I've only had one that was really mild. Basically, it was just blacking out for like..2 min. In Sept, Oct, and Nov I was having grandmals almost every 2 weeks. So the last one that was mild was a reason to celebrate. The thing is...don't give up. Hang tough. Do what you can, and be an informed patient. Don't think of E as something that ended your life... You have LOTS of life to embrace and enjoy. Just think of E as a challenge. One that you can strategize your way around. And remember...we're here for you. Feel free to ask questions or just vent.