Post Edited By Moderator (djdaz_1985) : 2/5/2008 2:48:21 PM (GMT-7)
I gotta admit, that if the medical profession have not come up with anything after 45 years, its unlikely that an epilepsy moderator is! . I have read your post several times, loking at all the details in it and nothing really comes to my mind, except for the fact that you have not mentioned anyone looking at your ears. There is a tiny shell shaped structure called the Cochlea in your ear and it is full of fluid. When the balance in the fluid is disturbed (through infection etc...) you cannot stand upright as your balance is well and truely shot. After a few hours, it can wear off until the fluid is disturbed again. If you have a condition that disturbs the fluid in your ear (Such as Ménière’s disease, also called idiopathicendolymphatic hydrops) this may be a cause. It doesnt sound much like epilepsy to me.
I hope this helps you
Darren, Thanks for such a quick reply! On your thoughts about my ears. I was checked out by ENT expert also. What puzzels me is that I have these evry single day of my life! Its not like I see some people post where they have been seizure free for 2 months or so. I do think that I'm having certain side effects to the Seroquel that I'm taking for sleep though. Since I have gotten older the seizures seem to have intensified ALOT! Again , it makes me stiffen right up and lasts anywhere from 10-30 seconds. All my muscles ache like someone beat me with a baseball bat and I feel completely drained afterwards. As I mentioned before they USUALLY only happened upon wake up ,but now seem to happen at any point of the day. Last week I had one after I had gone to the grocery store and was out front talking to an old neighbor when I had one. My neighbor noticed me shake alittle and asked if I was OK. I siad I needed a minute or two and then I had a stronger one and knew that I was in for one of my really bad sessions. She brought me home and was very concerned , I told her that I needed to get upstairs ,take some medication (Ativan) and close up my bedroom to make it as dark as possible. I told her I would call her to let her know that I was better. I including this because people that never witness a seizure before become very frightened when they see one occur. I hope and pray that someone on the internet reads my post and has soemthing that maybe similar to my situation. thank you again and if you have any other ideas please post them .........jim
Post Edited By Moderator (djdaz_1985) : 1/8/2008 3:00:23 AM (GMT-7)
just read your post now and i too am experiencing some of the problems that you have been facing, and i am sooo fed up and i have onli been going through this for 16months soo i really do sympathise with you as yours has been going on much much longer.
Although i have what is described as a typical grand mal seizure, e.g. i typically loose contiousness, stiffen up shake violently during this i may stop breathing i always bite my tongue or the inside of my mouth and sometimes i am incontinent.
my problems with seizures started out of the blue when i was 19 years old, i am now 21 years old, i have had numerous tests done such as mri, ct scan, two 1 hour eegs as an outpatient and a 48 hour eeg while an inpatient. so for dr havent given me any answers all i seem to get is if's but's and maybe's.
the first eeg which i had done showed some non-specific abnormalities (slowing apparently) about 2 hours after i had this test done i had a seizure and was brought back to hospital where i was diagnosed with epilepsy and started on lamotragine. i then continued to have seizures so i was given another drug called clobazam aswell as the lamotragine. i was on an increasing dose, after falling down all the stairs in ma home and hitting my head numerous times after loosing contiousness, i had two seizures one after the other without fully regaining contiousness, so again i was taken back to hospital.
I was admitted for observation (which turned out to be a two week stay in hospital) while in hospital i continued to have seizures and my medication was upped faster than it should have been, on one day i had about 17 seizures, dont realy remeber much of it though all i no is that i was given lorazepam or diazepam to stop them. i was taken for an eeg and apparently during this eeg i had a seizure and there was no abnormal brain activity recorded, so drs decided that i didnt have epilepsy and that they were non-epileptic attacks due to a chemical inbalance in the brain. (i was glad that i didnt have epilepsy but was still confused as to what was causing these seizures) i was discharged from hospital and they said a referall would be made to see another dr to discuss the cause of the seizures. but never recieved an appointment, after about 4 months of having seizures they stopped, and i was seizure free for about 7 months.
then one night i was out drinking with friends in a club after going to a party when i suddenly collapsed and had 2/3 seizures. i did not regain contiousness following these seizures and when i was taken to hospital i was so uncontious that the drs decided to put me on a life support machine and i was taken up to the intensive care unit. the drs initial thoughts were that someone had put drugs into my drink and i had reacted badly but that wasnt the case the toxocology reports came back clear, but i had already been discharge before the results so again no follow up was arranged.
about two weeks after i came out of hospital i had another seizure while driving luckily i had onli just got in my car and was turning round on a back street so i didnt crash and no one was injured. again i was taken back to hospital and kept in for another week, where again they wasnt really able to give me any clear answers only say what they think it may be and i was supposed to be referred to see another dr but never recieved the referral.
eventually we decided to pay to get a second opinion because it was taking so long on the nhs, finally i seen a dr who decided that i may have epilepsy and that it is possible to have epilepsy and non-epileptic attacks and it is also common. (oh forgot to mention the atacks which i had while in hospital were different from the ones i am currently having) so he arranged for me to have a 48 hour eeg done, which i had done and the results came back normal but i was told that this can be the case because i didnt have a seizure while being recorded, so still no further on but i am now waiting to see a dr who specialises in epilepsy and a cardiologist.
to make things worse i cannot drive, go out alone for fear of ending up back in hospital, i am not allowed to work because i am deemed a health and safety risk, and to top it all off i was told today that i may loose my job so all in all its actually ruining my life and the drs cant make up their minds i dont no how much longer i can cope for either, any suggestions of what may be causing these seizures would be helpful.
good luck to you all with findin a diagnosis, but i recon the health care system has gone mad and i no longer trust dr's
hi thnks for the reply i live in the uk.
yeah i no with weight issues i have lost some weight although i am only slim anyways and i dont go out or do anything for fear that i may have a seizure and end up back in hospital again!!,
i too cant work, because of health and safety reasons not only will my employer not let me work until my seizures are under control, my dr has decided that i shouldnt work too, i now fear that i am going to end up with depression on top of the seizures (what fun).
the tiredness that you described i do get tired quite easily which is unusual for someone of my age i am obviously more tired after i have had a seizure, when i was taking medication the clobazam and lamotragine for the seizures i practically slept my life away i was very rarely awake and i felt sick all the time and i couldnt eat but i am guessing that they were side effects due to the drugs.
if i have more than one seizure in a day it usually takes me a while to recover from my body aches all over for days, but if i only have one seizure then i usually recover in about a day.
these seizures are controlling my life and i cant do anything about it drs are questioning wether i have epilepsy now again because i dont fint the description of non-epileptic attack disorder. hopefully they will find out what is going on soon before i loose my job. i have been off sick now for nearly 4 months so my employer is getting a bit uptight about it.
Well I feel awful to hear you are going through all of this. Have you considered the option of seeing an infectious disease doctor? Where do you live? Is it possible you contracted Valley Fever or another virus which altered your nervous system? Causing insuring medical problems? Has anyone looked into a traumatic brain injury as a child that had unforeseen effects. I wish you the best of luck and hope you get resolution soon.
Post Edited By Moderator (djdaz_1985) : 2/5/2008 4:47:46 AM (GMT-7)
Homebound: Your welcome. We are all really friendly here and will guide you through gently. Once you get the hang of where to post and what the rules are, its easy!
Jims56: Your wish is my command! lol. I have changed the name on the thread for you. For future reference, if you want to do it yourself, you can simply edit the FIRST post in the thread (assuming it is yours) and change the name in the box at the top. You cannot do it on someone elses thread though. Only a moderator can do that.