I had an epileptic fit - my first, and I've been feeling terrible

[neweurope]

since then. Unfortunately I cannot use the search function - are there other epileptics around, are there threads about epilepsy? I need to talk to others and get some information... any help would be greatly appreciated!

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[MissHoneychurch]

1. Can't help you with that

but I help you with everything else you need help with. Just let me know :hug:

[neweurope]

2. Thank you, MissHoneychurch!

:hug:

Time to get off - my eyes are hurting again. I'll check in later, though.

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[cleofus1]

3. i have first hand knowledge re seizure disorders

i'm no doctor...but i've been around epileptics and witnessed scores of seizures...from gran mal to petit...both my wife and daughter...have had seizure disorders

[neweurope]

8. I imagine it's hard on the SO - mine is still trying to deny

what's going on. I can understand that he'd rather have a healthy woman *sigh*

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[hfojvt]

18. because of an ex-girlfriend

I have a copy of Epilepsy and the Family by Richard Lechtenberg MD that I seem to have no frigging use for. PM me an addy and I can mail it to you if you want.

[neweurope]

22. Thank you for your kind offer, but I'm German;

the postage will probably cost more than the book. But I appreciate it! :hug:

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[cleofus1]

20. i'm sorry you feel that way

you are still special...and a seizure disorder does not make you any less so...

[Mutley]

4. Doesn't look like there is much but there are three groups

that might have some people.


Disability
http://www.democraticunderground.com/discuss/duboard.php?az=show_topics&forum=250

Chronic Health Conditions
http://www.democraticunderground.com/discuss/duboard.php?az=show_topics&forum=317

Health
http://www.democraticunderground.com/discuss/duboard.php?az=show_topics&forum=222

You won't be able to post, but you'll be able to read, and PM someone who looks like they might have info to help you.

[neweurope]

9. Thanks a lot! That helps. One of my problems is that I cannot

stare at a computer too much right now because my eyes are hyper sensible.

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[demnan]

5. What does your doctor say?

and if you haven't been go as soon as you can. My brother had seizures for a few years after a rather devasting fall. He was on Dilantin for a few years. He hasn't had a seizure in over 20 years now. So his brain must have healed itself.

Get on medicine as soon as you can. Most times this condition can be controlled but only if you take your medications. Those seizures aren't good for anyone. Good luck! :hug:

[neweurope]

10. I just saw my doctor yesterday and now I'm waiting to see

a specialist. I very much hope I won't have to wait too long because I'm all dizzy and have great problems with my eyes.

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[emmajane67]

6. My SO just started having them again,

in South America of all places, scary enough without having to try and negotiate a language barrier at the hospital (although they were FANTASTIC at the hospitals).
They day after is always horrible for the SO, it's very taxing on your body so take care for a day or two after.
Also, as well as obviously getting some treatment, try and work out your triggers, it makes life easier. Managed to go and find the SO somewhere in the city and escort him home last week when he called me saying a seizure was coming on. It just means you can have one in a safe environment, not a train or something.
Tell someone all about it, or let them help you, sometimes other people ask better questions at the doctors than you might yourself so maybe take someone to seek treatment with you. It can be scary and confusing and an objective pair of ears will help you dissect the info you were told later on.
Research on the net and ask for the best drugs you can, if one makes you feel yuck, ask for another one. Check side effects (eg. Epilim and fertility).
Good luck, take care, and PM or post if you want more info or just to rant.

[neweurope]

11. Thank you for your help! Right now I'm just waiting to see a specialist

I think I have been having fits for years but only in my sleep so far (that would explain a lot of health problems both me and my doctors have been puzzled about) and this was the first fit during daytime. I'm very scared to drive now (which I have to since I'm taking care of two horses about ten miles away) and have a hundred questions *sigh*.

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[tigereye]

34. might be good to have someone drive you til you know for sure

a relative of mine has a seizure disorder and wasn't allowed to drive til he was seizure free for 6 months. Once you see a neurologist and get some more information, a support group might help to clarify things. Although upsetting and confusing, seizure disorders (if that is what it is in fact - there are other reasons that people have seizures, like stress, low blood sugar, etc.) are very treatable, hang in there and be gentle with yourself.

[neweurope]

35. Here in Germany they don't let you drive for one to three years.

The horses - two old animals which mean life to me - are the biggest problem. Both letting somebody else take care of them (which I would hate) and having somebody to drive me takes money I really don't have. So this is a very serious problem that has to be taken care of. And it will, I just don't know how.

Thank you :)

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[Kali]

61. Where are you - I might know someone who could help with the horses.

[neweurope]

65. Oh, but I'm in Germany... Frankfurt area.

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[Kali]

68. I know a very gentle person in Wiesbaden (Biebrich actually)

She is kind of busy teaching different pottery classes but she is very gentle and has been around horses a lot. She had two when she was young and she has been around mine when she comes to the US. Would you like to contact her or have me let her know? I know whe will be pretty busy this month with Christmas markets and classes etc, but she is more or less self-employed and might be interested. I can ask.

[bertha katzenengel]

7. Oh, no...

neweurope, try the health group (if you have a star)

best wishes :hug:

[neweurope]

12. Thank you, Bertha, for your wishes

:hug:

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[NMMNG]

13. I'm sorry to hear of your condition neweurope

I don't have a seizure disorder myself but in my line of work I have encountered many people who do. It can be a difficult and frightening condition to deal with, though with the right treatment many people can lead normal lives.

You might want to check out this Yahoo! Group. It is for people with epilepsy, and those who support them. The archives are public so you can read the messages, but if you wish to post messages I believe you will have to join the group.

Best wishes to you! :hug:

[neweurope]

15. Thank you, FundieSlayer!

I'll check it out later. Right now I have to go off because my eyes are so sensible to light since the fit. :hug:

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[NMMNG]

17. I hear you

Any sort of flashing/flickering light can be a problem, and a computer monitor does indeed flicker (even if it's not apparent to the user).

[SoCalDem]

57. There is a shield you can get for the computer screen

I have serious visual problems (not epilepsy) and I found a website that showed several to help with glare & low-vision.. I will try to find it and PM you with it,...

I know you must be scared and worried, but try to pamper yourself right now.. Call a close friend and have a visit.. cry on her/his shoulder..let it out.. Ask them to accompany you on your horse visits. MOST people want to help and only need be asked..

:hug:

edit.. found one
http://www.allsop.com/home-office-tools/glare-screens/model-25831/vision-guard-xxl/

edit again....more stuff here

http://www.google.com/search?svnum=10&hl=en&lr=&q=monitor%20screen%20epilepsy&btnG=Search&sa=N&tab=iw

[neweurope]

60. Thank you! I'll certainly check it out.

:hugs: You DUers are a great help!

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[TrogL]

14. Are you taking Wellbutrin?

If so, get off it. It gave me seizures from hell.

Check with your doctor if your any other SSRI or NSRI.

[neweurope]

23. I'm taking no medication so far, I only just saw my doctor and

have an appointment with a specialist for the 18th. What do SSRI and NSRI mean?

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[Sanity Claws]

37. SSRI and NSRI are antidepressants

SSRIs (selective serotonin reuptake inhibitors, I think) include Prozac and Wellbutrin. I think NSRIs refer to earlier forms of antidepressants, like MAOs.
Apparently the poster was letting you that meds you may be taking for other conditions may be causing the seizures.
Good luck.

[neweurope]

40. Thank you :) Now I understand.

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[MissMarple]

16. A friend's daughter had a seizure, she was a young adult.

I think she had just the one, maybe two. But she is fine now, had a baby and is expecting another. Off meds. :)

Good luck, sweetheart. :hug:

[neweurope]

25. Thank you, Miss Marple!

Hope is what I need right now. We have applied for a(rented) house in the middle of nowhere which I so badly wanted to have... The thought of being there all alone in the middle of nowhere - with horses to feed 15 miles off and not being allowed to drive a car anymore - scares hell out of me. I also have a problem with my muscles meaning I'm hardly able to walk to a bus station. Right now I'm all panic - so thank you :hug:

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[Buddyblazon]

19. I unfortunately know nearly nothing about seizures/epilepsy....

but I'd like to tell you to be strong. Life can be tough. But we are tougher...and I believe you are too.

Keep your chin up. Positive attitude is everything. And don't say things like your SO wants a healthy woman. You ARE healthy. And I'm betting that your SO ,though he may be concerned, still loves you just as much if not more.

;)

[neweurope]

27. Yes I'm tough, BuddyBlazon, I'm just experiencing some

panic right now, actually more than just some panic, I've never been so panicked in my life... The thought of being hurt by light (which I'm experiencing rightg now) and not being able to drive a car makes me want to cry like a child.
I don't know where human will is situated - if it's in the brain it might get tough; if not, I'll beat my damn brain! I'll make it somehow.

Thanks.

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[firefox]

21. You should study up on cannabis for epilepsy

Why not start your search with the Google results for epilepsy- http://tinyurl.com/cxvjj

You might think I am kidding about using cannabis for epilepsy, but I am extremely serious. The courts in Canada ordered Health Canada to adopt a medical marijuana program back around 1999. Even to this day Health Canada has done every thing it can to keep from implementing a real program and in a country where a million people claim to use cannabis for medical purposes Hellth Canada has only approved about 900. It really is unreal with having to have a second opinion by a specialist and having to fill out a 29 page form and all.

Well anyway there was an epileptic named Terry Parker that took the non-functioning of Hellth Canada to court. The Ontario Court of Appeals on July 31, 2000 declared the possession laws unconstitutional because their was no method of supply for someone that needed cannabis to maintain life and gave them a year to fix it in order to save the possession section of the Controlled Drug Substances Act from being removed from law.

He has a very interesting story and he now crusades against the two brain operations forced on him before he was even allowed to use cannabis. Cannabis was illegal yet worked, but they subjected him to two operations he calls lobotomy and they did not work.

Anyway, he was joined in that case by John Turmel who is a champion for epileptics in Canada. He is somewhat extreme when he says cannabis prohibition is genocide to epileptics but he has reason to say that prohibition is killing 5 epileptics a day in Canada. He has an argument that says that anyone should be able to use cannabis as preventive medicine as half of all people do not know they have epilepsy and it might be the first seizure that kills them.

Terry Parker has written several things this year about the program at an infamous hospital that does rapes people with lobotomies at this forum on medpot in Canada- http://health.groups.yahoo.com/group/MedPot-discuss/ You would have to open the monthly postings and look for Terry Parker and I doubt it interest you that much.

But the epileptic association and the AIDS and MS people all pushed for medical marijuana in Canada, unlike the ones in the US that have to be bought off in my opinion. Anyway, I have read enough testimony to believe that cannabis is the best thing for epilepsy. It has to be the safest and in a world of true medicine the do no harm mantra of physicians would dictate treatment start with cannabis. Of course the pill companies will have none of that until they figure out how to profit from it and they have their politicians insist on total prohibition.

It is a very interesting path to take and you could join the yahoo group above or join the forums at http://www.medpot.net/forums where Marc Paquette fights the injustice of the cannabis laws. He was the third party of Parker and Turmel/Paquette that got the possession laws struck down in Canada. He is a medical marijuana user that is still hassled by the system and now is now going back to court because the fraud of valid laws continues. Ask him if what I say is not true. He will answer you. He goes by "medpot" in the forums. Ask him about Terry Parker and John Turmel in relation to the epileptics of Canada.

[neweurope]

31. Thank you for the information - I will certainly check up on it!

:hi:

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[TallahasseeGrannie]

24. My son lives with a seizure disorder

it took a few times to get the medication straight, but since then, no problem.

He had a very intersting stay in the hospital hooked up to an EEG coming out of his head. He looked like a character from the Star Wars bar scene. He had to sleep under a video camera for two days so they could see his seizure activity.

Get a good neurologist.

[neweurope]

28. Thanks for the encouragement, Grannie :)

And I'm glad that your son is ok now - it must have been a fright.

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[ComerPerro]

26. PM me if you have any questions or need advice

[neweurope]

29. Thank you, ComerPerro, I will.

I have a lot to get sorted out right now.

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[MissB]

30. I can offer no help

but I hope you feel better soon. :hug:

[neweurope]

32. Thank you, missb!

:hug:

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[faithnotgreed]

33. every best wish neweurope

this must be pretty scary for you since this is the first its happened (that you know of since you mentioned it may have occurred whilst you sleep)

i have no experience whatsoever with this but just wanted to add my name to the many others here who are thinking of you

wishing you a wonderful doctor ....
please do let us know how youre doing

[neweurope]

36. Thank you very much... You DO help, you know :)

:hug:

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[fight4my3sons]

38. my sister had a seizure out of the blue one night

they found out she had a non-malignant brain tumor. She had it removed five years ago (about a month after she had the seizure.) She is fine now. She still takes anti-seizure meds, Topamax, and will for the rest of her life. She was 25 when it happened. I don't know what caused it. I hope they find out what is causing yours, I remember how scary it was for her. She couldn't drive until she was seizure-free for six months. I think that was one of the hardest things for her. she is very independent. Good luck with the neurologist. I go to one - he is pretty good. I have a blood disorder that causes bad migraines and other fun things. Yahoo does have some great support groups for health related things. I saw other people had suggested that to you and thay are free. I found more information on the support group there about my blood disorder than from any other location, including doctors. It helps to talk to others going through the same thing.

[neweurope]

42. A tumor might be the reason - I won't know until I'll see

that specialist. It's true that other patients sometimes help more than the doctors, I had hepatitis C, I know. I'm surprised that your sister has to take medication even though her tumor was removed.

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[fight4my3sons]

43. yes, she continued to have seizures after the surgery.

the tumor was in a major blood vessel that runs right down the center of your brain. I don't think that they could remove every last bit of it. There was too much bleeding, she had to have 9 units of blood transfused and I think it got too risky so they left well enough alone. I know that she has to go back for MRI's every year to make sure it hasn't had any regrowth. It has stayed the same since surgery, but if she is not on anti-seizure medication she has seizures. I don't like to bring it up so I may not know the whole story. I hope that the doctors can find out what ever it is with you and can treat it quickly.

[neweurope]

45. Thank you for the additional information.

I hope your condition will get better! :hug:

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[fight4my3sons]

73. thanks!

You too!:hug:

[XemaSab]

39. That's awful!

I understand how it is to have your body revolt on you...

Hope you feel better soon, and it can be medically resolved...

:hug:

[neweurope]

41. Thank you.

I'm pretty scared.

:hug:

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[achtung_circus]

44. Seizures, not fits.

I had my first seizure at the age of 8, was on Dilantin for 3 years and was OK until puberty. Then I began having a lot. I mostly grew out of it, by staying on my medication and learning my triggers.

MY triggers include alcohol, a recent (5 year) development, and cannabis. I have been fine until August when I had the WORST seizure ever. The medical consensus seems to be stress-related- don't get me started.

I am now, since last week, off on indefinite medical leave. I'm feeling much better, the wheels are beginning to slow on the

I can probably answer a lot of questions you might have, but don't know where to start. Ask away.

NB I was photosensitive for years and grew out of it. My recent, mostly stress-related symptoms include sensitivity to sounds. I was being startled by any loud noise.

My job was driving me nuts.

[neweurope]

47. That photosensitivity is making life hard right now. But I

am like you overly sensitive to sounds, too (and that in spite of growing deafness!). When my SO enters the apartment I am so startled that my heart starts racing, and any loud noise from the street is making me irritated and aggressive. I hate being in places with lots of people now because everything is too loud.

I also have a funny thing with my sense of smell (doctors evidently always thought I was nuts when I mentioned it so I don't mention it anymore): While I can hardly smell the flowers in my garden anymore I could rent myself out as a mold-sniffing dog, and artificial, chemical smells revolt me. Walking along the shelves in the supermarket where the waashing powder and the like are is an ordeal. Have you ever heard of that?

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[KT2000]

50. yes - chemical sensitivity

it is something doctors do not usually recognize partly because they do not know about it and also because it is politically incorrect for doctors to recognize that problem. Here are some of the names it goes by:
Multiple Chemical Sensitivity (MCS)
Environmental Illness
Idiopathic Environmental Intolerances (corporate organizations adopted this name to remove "chemicals" as cause)

There is info on the internet about it.

I would suggest that you not use scented products, cleaning products other that simple soaps, vinegar and baking soda, or pesticides or anything like that.

Alot of those products contain neurotoxins. They are not good for anyone.

Good luck to you

[neweurope]

51. Thanks a lot - as soon as my eyes allow I will check the internet.

I love DU :) - nobody stays alone with a problem.

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[achtung_circus]

54. Do you know what auras are?

Thet are the feelings, hard to explain, that many people have prior to a seizure. They manifest in different ways, I have always had strong ones. They have prevented me from hurting myself or others by helping me to recognize when I am at risk.

Mine are ghenerally a feeling of disconnect, of being at one step removed from the world.

Famously, there was a woman in Montreal whose aurars always included the odour of burnt toast. She has severe epilepsy and was operated on by Wilder Penfield of the Montreal Neurological Institute under local anasthesia. By probing areas of the brain until he discovered one are that evoked the burning toast odour and then excising that area, her epilepsy was greatly ameliorated.

Medical science is beyond random poking now. Electroencephlagrams (EEGs) and MRIs are a better way to go.

It's not the end of the world, it means managing a condition. Some peopkle have a single seizure and never find out why. There are other causes.

[neweurope]

55. I've read about auras - my seizure came without forewarning

though. - No, it's not the end of the world but without a driving license life will become very complicated for me. And I know that my SO will be very unwilling to take up the load.

What really worries me besides losing my drivers license is my photosensitivity. I don't want to have to stay in darkened rooms for the rest of my life. Do you have any idea whether that might be reversible?

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[achtung_circus]

56. Without a diagnosis, hard to speculate.

I do know that for years one of my triggers, to some extend, was photosensetivity. It went away. Of course, that photosensetivity did not impair me in other ways. It manifested itself in my being prone to seizure activity when exposed to rock concert light shows and similar extreme exposure. Also in that vein, marijuana use didn't help. I experimented in a huge kind of way when I was young.

[neweurope]

62. Very relieved to hear that the photosensitivity went away.

With me it's flickkering light - it really makes me sick since that seizure - but also carlights or even the sun hurt my eyes. I'm so scared right now that I asked to go to hospital; I got a bed for next Thursday. Then I'll know more hopefully.

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[DainBramaged]

46. Neurontin is the drug prescribed for my beloved.

My beloved suffers from them due to her physical condition. She has them under control with the Neurontin. Some side effects, including vision problems, but it was the first medication they tried on her and it worked.

http://www.neurontin.com/partial_seizures/

In general, there are 2 kinds of partial seizures: simple and complex. A person who has a simple partial seizure stays alert. The person can answer questions and follow commands. The person can also remember what happened during the seizure.

With a complex partial seizure, there is a change in or loss of consciousness. The person may not be able to answer questions or follow commands. Often the person cannot remember what happened during part or all of the seizure.

Both kinds of partial seizures can spread to become stronger (convulsive) seizures. These involve the whole brain.

[neweurope]

48. Thank you - I've no idea into which category I belong.

I was still more or less conscious but totally cramped up and everything was black, and my heart was racing so I thought I'd die.

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[emmajane67]

49. That's what my SO is on, but...

from what I understand it is usually either used in conjunction with another medication or as a last resort, due to its cost.
My SO was put on it by a neurologist in Peru who understood that his job was to get us through the continent with a minimum of fuss and as few seizures as possible until we could see a neurologist in London. My SO had great insurance so he went straight for the best meds. You may find a regular doctor wants to round and round trying the cheaper drugs or something first.
Neurontin seems to have a lot less side effects than epilum which he was on years ago.
The thing with ANY anti-convulsant as far as I understand is that once you start taking it you must take it with militaristic precision. If you skip doses you're actually more at risk of fitting than you would have been having never taken any at all, especially with a drug like Neurontin which has a very short half life.
Hope things are going okay for you, I know how frightening this whole ordeal must seem right now. The good news is it's not the end of the world and in hindsight merely a blip on the radar.
Take care and good luck, and again, ask if you need anything.

[neweurope]

52. Yes, I will - and thank you again.

What's most frightening right now is not knowing the cause - and the fact that I won't be allowed to drive which complicates my life very much - but I'll find a solution. Your "blip on the radar"-picture will stay with me :)

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[emmajane67]

53. I don't thin they really know what causes epilepsy.

I mean 'disorganised brain function in the cerebral cortex' is what causes it but what does that mean, really.
You can find out what causes it for you. For my SO there is a recipie: hangover + not enough sleep + stress = seizure. But that took a long time to work out.
Another thing I might add is that the tests might not give you answers, my SO's first batch of seizures (about 6 years ago) did not show up as epilepsy in the tests, this time they did.
I know how scarey it is when you don't know what is happening in your own body and why. And you feel suddenly vulnerable because something is happening that you can't control and that, at times, makes you dependent on others. I've had the same thing with completely inexplicable chronic migraines, another condition that the medical profession still can't shed a lot of light on.
You may be able to drive sooner than you think, especially if you get meds sorted or get an understanding of an 'aura' which would allow you to get off the road.
You are in my thoguhts as I have watched someone I love go through the range of emotions you are feeling now.
Try to make peace with the fact that it is/has happened and the 'why' will come sometime. It's not fair, but not much is.
Take care of you.

[China_cat]

58. A seizure doesn't automatically mean

epilepsy. Seizures are common with very low blood sugar and some other conditions. You'll need tests to find out what happened.

And even if it is epilepsy, that doesn't necessarily mean you'll be denied the privilege of driving, or doing anything else you want to.

[neweurope]

64. I hope you're right :)

I go to hospital Thursday, then I'll know more.

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[China_cat]

66. Well, it's just that I know

several epileptics...all of who were diagnosed before the age of 15. Latest onset is usually puberty unless there's severe head trauma. Not to say it can't come on later, just that it isn't common.

Oh, and those several epileptics I know ALL have driver's licenses. Some states require a certificate of being seizure free for 1 year to drive, others want a doctor's certificate, most don't even ask.

[neweurope]

67. I see. well, I'll have to wait for the examination.

As to the drivers license: I just read again that here in Germany they are very strict - depending on the kind of epilepsy it's one to three years after the last seizure - and after experts and tests. I'll manage somehow but it'll be hard.

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[khashka]

59. OK my advice...

Speak to a medical professional. Epilepsy is a serious problem.
Some of the drugs to control it are pretty harsh (ask me or AVH about Tegretol one day when you have a lot of time).

But there are lots of support groups on the Internet, just google it. There are health issues forums here on DU, as well.

Take care of yourself, OK?

Khash.

[neweurope]

63. Thanks...

I read about those drugs and yes, they must be harsh. Had hepatitis C and a combination therapy with Ribavirin and Interferon, that was hell, too... (but at least I lost weight while I've read that with the epilepsy drugs you gain weight - which I'm scared of *sigh*)

I did google since starting the thread and found some German epilepsy groups. I just asked here first because I'm here every day - and because I like the people here so much.
:hi:

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[khashka]

69. The gaining weight problem is real

I gained 70 lbs. After I went off the medication I lost it. The drugs can seriously upset your stomache (it feels like being hungry, so you eat like crazy), so ask your doctor - there are medications that can reduce the side effects.

But if you've had a seizure for the first time, you really need to see your doctor. NOW! People live perfectly normal lives and have seizures every day - but you need to know how to take care of yourself, what treatments are available, etc.

Hope I've been of some help :)

Khash.

[obxhead]

70. An LCD monitor may help a lot.

They don't "strobe light"

[Taxloss]

72. non-LCD monitors give me awful headaches.

I'm not epileptic, but I know what you mean.

[Taxloss]

71. I'm sorry to hear that, neweurope.

Were you aware that you had epilepsy? What brought on the fit? Were those around you able to help?

[NNadir]

74. If you've had an unexplained convulsion without a history, you need an

evaluation. There are many other conditions that can cause convulsions that are NOT epilepsy.

I'm not a doctor but I know this from family experience. Please have it checked out.