Hi Sue,

WHOOHOO! Finally gettin treated rite! :) I do hope Tegrestol works for You. :) My daughter & I were both on it. Didn't work for me! But, side effects were nil. :) Same w/ my daughter. Sue, if I remember correctly, the Only side effect that is dangerous is a Rash. A lot of our meds come w/ That Warning. :( But, if other side effects appear & Don't diminish/disappear w/in 4-6 weeks ( & are Intolerable or interfere w/ 'Quality of Life') , after your final Dose, get back on the med merrygoround or seek alternatives. :) Remember a Good Diet helps your meds work more efficiently w/ Fewer side effects. :)

And talk to your pharmacist about Vitamins/supplements & any OTC meds you mite take, too. :)

Love Candi

Thanks Candi,
The Dr at the pain clinic went through all my medications, vitamins etc & what the possible side effects could be - mind you I dont remember all of them at all LOL. Main one;s he said to be aware of were the rash, that it may make the baclofen more effective YAY (for spasm's for ms) & may make me more tired - so far the opposite but only on 100mg x 2 times a day today, was only 1 before that. Then the pharmacist at the hospital went back to the Dr to check as I am on so many other things that may interact & then went through them too. Also gave me lots of information too.
I am hopeful it will help, at least someone is trying.
It is all about quality of life for sure.
Hugs

Hi Aussie, If you clik on the green med word you can refresh your memory about what to watch for. I know I find it easier to read then Listen. I forget every time, the majority of the info. :) And ya almost need a magnifying glass to see/read pharmacy printouts. :) I'm glad your pharmacist & DR are working together. It really does take teamwork. And when ya find a Doc ready to go that extra bit to communicate w/ other Pro's well, That's a Keeper! :) Whew! That was one long thought. :) And I'm sure ya already know that. :)

Time & Patience. Your goal is 6 weeks. Then 6 mths. My Prayers are w/ You. Keep up w./ your Journal during titration (raising dose. )

Love Candi

Thanks Candi,
Have had a look & that was great. Now up to 2 morning & evening meal time. No bad side effects but not stopped them either.
On 1 morning & night I was still getting them & had bad one's 2 nights running. Now up to 2 tablets twice a day so hope that helps. Saw local Dr yesterday & she was fine with that.
Have had energy today & not falling asleep too.
Hopefully getting somewhere.
Thanks again

Peat, repeat: Time & Patience & a Good Diet to help them meds work better ! Glad you are gettin your energy back. That sounds like one side effect you won't have to worry about. :) HUGS

Love Candi

Hi AusSue, I take 1600mg of tegretol a day, quite a bit different from what dose your taking. I have short term memory loss badly and concentration problems. I was told that tegretol is a sodium channel drug that it works differently than the newest medications. I've been on tegretol for a long time too and I'm 52, this may be a contributing factor. I hope things go well for you.

Thanks for hints. Now up to 2 tablets 2 times a day. Memory is atrocious, but hard to know if that is the tablets or the ms which is rearing its head too.
Still not controlling it & had a doozie at work today.
I am in an office by myself (not safe) but they wont change it till we move buildings end May/early June. I have possibly had others but don't know. All I know is my team supervisor came in & said I was staring into space & didn't respond to him till about 4th time. I was shaky & my back was killing me after & of course leg bag (catheter) was full. He didn't know what to do & I said to him that's why I don't like being in an office by myself. There is supposed to be another person in there but they keep leaving & they haven't employed a replacement & now the scanner (which they will use) has decided to play up so others not even coming in to use it.

I am worried about my safety now as no one will even know if I have one in there as they don't come in unless they want something (there are days that no one has come in at all). I work from 9-3 with breaks which is the only time I leave the office for breaks other than to go to ground floor (we are on 2nd & disabled toilet is on ground floor).
I am going to be using my electric wheelchair once I sort out the bus to connect with the train in the way to work so that will be a bit safer. That should be sorted out by next week, hopefully. Only some busses are wheelchair capable so have to phone to get it on the time I need to catch it.
Anyway, what I was asking is other than demand to be moved (which wont work) what can I do to make my work environment safer & to know when I have had the absence seizures? I don't even have a phone connected in the office so I can't have it set to dial others too.
Thanks in advance

Just an update & hope I get some response. Makes me feel better putting it in words anyway.
I have had more seizures at work, fortunately I am now in my electric wheelchair so don't fall or anything.

I had 1 (that I know of) on Friday at work. There was another girl in the office with me & she was trying to get a response from me as I made weird noises (her words). She said it wasn't understandable words just sounded like garble & she was quite worried when I didn't respond. She gave it 5 minutes then went to the outer office & asked who was first aid as I was having a seizure & not responding. She knows what they are from family member with them she said later.
They got the first aid girl who knew nothing about seizures to come in & then they rang another one. By then I sort of was with it but very confused. I couldn't remember how to use the control on my chair to reverse out of the desk & very confused. They just stayed with me & had a drink there for me when I wanted it.
I had a very sore back & couldn't turn my head or body at all. My left side (which is weak from ms) was totally useless. My leg bag (catheter) was very full & you could see it bulging through trousers.
It was not the kind where you jerk all over just stiffen & then basically lose any comprehension or reaction even though eyes are open.
Now they are asking me what they are supposed to do if they find me like that again & I don't know what to tell them. There are a few trained in first aid basic but know nothing about seizures & my friend in another dept has different seizures (the one's that she loses consciusness & jerks etc) was not there. What do I tell them other than if it lasts too long (not sure how long) to call an ambulance. I am sure they are going to try to use this against me in future about being able to work etc. I am trying to avoid that & make me safer too.

I am up to 3 x 100ml tegretol twice a day & 2 gabentin twice a day. This is obviously not controlling it either. I went to local Dr today but it was a different one (they take turns on Saturday) & she had already had a go at me for seeing different Dr's in the clinic so I was a bit annoyed (to put it mild) & I didn't bother discussing the seizures. Will go back another day & see the other Dr to discuss it as she has been looking after that side of it.

I guess I am asking for any ideas on what to tell work people about the seizures & how to handle them.
How to cope with this myself as I had at least 3 seizures last week (that I know of) & have had very sore back, vagueness/confusion several times & this is scaring the crap out of me. I am on medication now for it so thought it would ease & it isn't, if anything getting worse. Who do I try to see about it - gp (local Dr), Neurologist (due to see end of May), or pain clinic - who put me on the medication.
I am very confused with it all & scared about which way I am going with health issues. ms is playing up too of course with stiffness & vision issues with right eye etc.

Any help please??? Thanks for listening.

Hi Sue, ask them to time them, they are probably shorter than what you think...and just to stand by incase the situation gets worse.
I have that type of seizure....mine last between 30 seconds to a minute. My Dr. calls it a "break through seizure"
I've been on tegretol a looooong time. Just recently started to not work. Please don't let anyone push you around at work. If you work a good and efficent days work, they shouldn't hassle you. Good luck.
Maxine

Hi Sue, Your 'trial & error' phase for this med ain't up yet. :) 6 weeks is what it takes most times to reach a therapeutic level. You need to talk w/ your Neuro, first. Then, ask him to talk w/ your pain DR. They should be working as a Team & keeping each other Updated. :( Family DRS don't know much about seizures & medicines, except to refill & take 'complaints'., blood tests. :(

A New Law was passed against Discrimination in the work force against Epilepsy. You can read more info on epilepsytalk.com. Phylis has other articles you may want to read too. :) You don't Have to Join. Just visit. :)

What to tell them PPL you work w/. You know what kind of seizures you have. Tell them what to watch for. And I agree w/ Mackerman, have them time you, too. Hand out Info on Proper Seizure First Aid. If they think you mite harm yourself, then they should try to assist you to the floor away from anything harmful & wait it out. Then, describe how you will be afterwards as 'normal'. :) Tell them to remain Calm & just be there for you.

Gotta go. Hope this helped. Know I'm Listening. :)

Love Candi

Dear Aussie Sue,
I recently videotaped my son while he was having a seisure and how he acted afterwards....He has been having seisures after a motorcycle accident in 2008...Nothing could be found on eegs, mris, blood work, catscans...The last neurlogists said he thought my son's seisures were psychosomatic?! I just took him to the Mayo Clinic...The neurologists was wonderful...spent two hours with us...Put my son on Debakote...I am writing this comment to let you know that you are not alone when trying to get help for your seisures...Good luck and God bless...Rebe

Thank you all so much for your replies. Think I was getting a bit stressed (?) about them increasing instead f decreasing. I do need to be patient with with the medication for sure. Will also ask hubby to tape & time them on his phone. He knows how to do that. Will also do the same with friend on train as apparently I have them on way to work too so if she can time them it will be helpful too.

I do need to relax for sure but hard when there are so many things hitting me again at once. ms is playing up with left leg dragging & right eye closing/blurring & memory real bad. Add to that I think the diverticular disease is playing up as keep being constipated/then runs, cant stabilise it. Seeing Surgeon that operated on May 12 so that is good as no follow up since surgery end August.
Thanks again, it is so good to be understood for sure.
Hugs to all

I have used tegratol for many years now. It is the one so far that has worked best for me. I hope it works well for you. Just so you know if you are perscibed to & this happened to me. it can cause double vision.

Thank you for all taking time to read my posts & give me advice.
I had another "blank out" on the train on Friday morning & the friend with me timed it immediately, she also kept moving her head & my eyes followed but I didn't respond. She said I was out for 2 minutes & non responsive & came to with a bad back spasm (which I started with) so at least I know how long that one was.
I then had a meeting at work with human resources manager & my ms worker (who has got me wheel chair & other things & is advocating for me at work) & explained my concern over the situation.
Turns out HR didn't even know that I was in an office by myself with back to others & no phone. She thought others came in regular & also that I had a phone. Wasn't quite sure what she could share with others due to privacy laws. She has said she will get me a phone so at least if I can't move (after one) I can phone some one in the team to bring me a drink. In the new building I will be with the team so this won't be an issue which is good. In the meantime, hoping to change desks so at least others can see me when they walk past office, also going to find out who nearest first aid officer is now & who it will be when we move. Then it is up to me how much I tell them but at least I can tell them enough so the wont panic & call an ambulance unless it is a long one.
At least work is now aware & knows that all I need after is to be calm & probably a drink & if anyone sees it to time it & make sure I am safe.

Thanks for the info about time for meds to work & breakthrough seizures too. I am learning so much from you & really appreciate it.

AusSue....I'm just glad they're finally getting you a phone!! Seriously...good job telling them how it is and what you need..:-)