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Dr. Bob is Robert Hsiung, MD,
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Posted by bridgey1128 on October 22, 2004, at 14:25:44
In reply to Re: Are you OK, Kat? » rainy, posted by iris2 on October 22, 2004, at 14:24:01
Who has been on Topomax since 1992? I thought it had only been around since 97?
Posted by headachequeen on October 22, 2004, at 14:34:14
In reply to Are you OK, Kat?, posted by Stressee on October 22, 2004, at 13:29:19
> Kat, I haven't seen any posting from you and am wondering if you are ok? -L
Hi L!!
I am just now catching up on e-mail... and what a mass of it there is... why do people think I want to read the latest joke(??) going the rounds of their offices... sometimes it is barely even funny... and there are so many of them...Thank you so much for caring... it really matters...
I am trying so hard to beat this and I am going to beat it... just not today I guess... and knowing that you and the others are out there really means a lot...
I have been in a mass of these wretched seizures... now if only I could send them in a series of e-mails to people.. wouldn't that be hilarious?
The dry mouth and the constant feeling of numbness in my mouth and in my lips... and the constant lip-licking... I may have no lips left when this is over...
and the sense of being in some sort of balloon that will not open and let me out...
I am really tired of this nonsense. I do not know how people who suffer the really hard epilepsy with the strong seizures bear it. They have my sympathy, believe me. I have been unable to read all day and most of yesterday and I am ready to whine to anyone who will listen.
Walking is an experience, believe me...
I read or heard some where that lip-licking is a sign of alcoholism -- well, with the constant lip-licking that I am unable to control and the staggering walk, I am sure that people here think I am a knock-down staggering drunk and should check into a clinic...
and the speech slurring... oh, that must convince them... I can hear them now as they mutter when I stagger past or as they walk past me as I try to stand upright, but sway from side to side (my balance is shot!)...
Then we have the speech itself as I try to put words together properly and come out with words that are really not words but parodies of words...
digraphs especially become switched... th is misplaced all the time... as is ph and so on...and awayyyyyy we go...
I am so tired all the time...
this is not fun... if it were not for the fact that I have lost two pounds I think I would simply start throwing things...
and may still do so...
I am angry ... we can put a man on the moon.. and all that stuff... then why can I not conquer this epilepsy ????meanwhule I am going to read all the posts to psychobabble now... and probabluy post to most...
be prepared for some grouchy ones because I am shaky and grouchy in my balloon...
can barely read and am forced to reread everything... but I shall get tehre...
kat
Posted by headachequeen on October 22, 2004, at 14:38:18
In reply to Re:laundry and fish, posted by bridgey1128 on October 18, 2004, at 16:35:34
> OK that's what I thought but I wasn't sure. If it increases past the nighttime dosage then I would need to increase THAT dosage. Like if I got up to 225mg I would take 125mg at night and 100mg in the morning to make sure the highest dosage is always at night, correct? I thought that is what you meant but I wasn't sure.
According to the neorologists who have been treating me and one of them is the guy who did all the testing start at night then when the high night dose is reached work on the morning dose so you have it figured out...
it seems odd to me that a neurologist would figure out the weight part or work on weight tests but what the hevk whatever works I guess
kat
Posted by headachequeen on October 22, 2004, at 14:53:45
In reply to topamax and tegretol, posted by rainy on October 22, 2004, at 9:58:13
> Kat, how are you feeling?
> rainyI think I just answered this one... in excessive detail... :(
the tegretol is now back up to 1000 mg as of Wednesday... I have an appointment with an opthamologist in a week to see if it is doing any damage to my eyes...
and have to have blood tests every few weeks to see if I still have blood or something...
they know that there will be too much of it in my blood but it is enough to keep the seizures under contril I hope... vertainly better than before...
so now we go on for a week and then the next increase and hope for stability...
hope and then some...
out of curiosity is anyone else out there on topomax for seizures???
kat
Posted by iris2 on October 22, 2004, at 15:02:12
In reply to Re: Are you OK, Kat? » Stressee, posted by headachequeen on October 22, 2004, at 14:34:14
I read you have seizurses but do you have epilepsy? I do not know I might have already suggested this but have you looked into Vagus Nerve Stimulation or VNS? Sorry about the seizures. I have never had them but have seen other people go through them. Do not know about yours but they can be he**.
By the way I used to lick my lips all the time and sometimes still find myself doing it. My boyfriend a long time ago thought it was sexy! So don't worry about it.
irene
Posted by headachequeen on October 22, 2004, at 15:19:37
In reply to Re: Are you OK, Kat? » headachequeen, posted by iris2 on October 22, 2004, at 15:02:12
> I read you have seizurses but do you have epilepsy? I do not know I might have already suggested this but have you looked into Vagus Nerve Stimulation or VNS? Sorry about the seizures. I have never had them but have seen other people go through them. Do not know about yours but they can be he**.
>
> By the way I used to lick my lips all the time and sometimes still find myself doing it. My boyfriend a long time ago thought it was sexy! So don't worry about it.
>
> irene
I am an epileptic and for years had nocturnal seizures which wre something I could manage...
now, since the latest test, this telemetry thing an eeg with a television camera in which they do their darnedest to cause seizures during the day so they can see what happens in your brain and body during one while you sleep (you have been awake for 24 hours before-hand), I have started the pleaseure of daytime seizures with some nocturnal seizures thrown in for seasoning...
never knowing what to expect is such fun...
adds excitement to my day...
means I can not go out on my own as I could walk out in front of a truck because in the midst of a seizure I do not know what I am doing... it is sort of a walking coma...
sometimes I am totally comatose others I am more in a vagueness that I am unable to describe...
life is really not fun...lip-licking can be sexy.. we encourage it when photographing brides and such... but constant non-stop, no, it is anything but... and I really think I am wearing away layers and layers of skin...
the various companies that manufacture the products that protect the lips from weather are making a fortune... wish they would make a diabetic chocolate-flavoured one...
kat
Posted by headachequeen on October 22, 2004, at 15:19:57
In reply to Re: Topomax and bipolar II, posted by Stressee on October 20, 2004, at 7:59:59
> If you or anyone can remember, how did you feel on 200 mg per day? M is taking it, and is on 75mg am and 50 pm until later then she goes up 25mg in the pm. I did it backwards, I know!! She says she has had ringing in her ears for around 24 hrs. Is that normal? No other side-effects except the tingling. No decrease in appetite, but I think it is starting to help the binging. She says it is, but who know with a 16 yr. old. I can tell you I'm like a Jykle and Hyde, and I don't have Bipolar II that I know of. I am going to ask to be switched off my wellbutrin, because I don't think it works all that well. As for eating, everyone, it seems lately that if I see it, I'm going to eat it. I started trying to eat "healthfully" yesterday, and I hate it. UG!!! I work at a fitness center and I came to the conclusion that I should practice what I preach. Right? Keep telling me that PLEASE. -L
Wellbutrin from personal experioence is useless... and I found out in increases seizures too... of course it can cause them too...
the fact that she started the meds backwards so to speak and I do speak backwards these days :) may cause the thing to work backwards
by now it should be helping the weight...
although if it helps the binging then that will help the weight too...
if there is ringing in the ears then do not go up for a while...
kat
Posted by Stressee on October 22, 2004, at 15:51:36
In reply to Re: bipolar and antidepressants, posted by Stressee on October 22, 2004, at 13:33:56
I can't get the babble mail to work for me!!! I did everything just like it was suggested. &#$@#$#$!!! -L
Posted by Stressee on October 22, 2004, at 16:10:47
In reply to Re: bipolar and antidepressants, posted by Stressee on October 22, 2004, at 15:51:36
ok everyone, now I am ticked off!!!!! I have gone in and clicked babble mail on three times now. Put in my confermation number three times, and it still won't work. I'm giving up. Let me know if there's something else I can do. Another idea maybe? -L
Posted by rainy on October 22, 2004, at 18:23:54
In reply to Re: Re being bipolar II, Civil and on Topamax » rainy, posted by iris2 on October 22, 2004, at 13:56:39
Hey, I'm thrilled, well pleased, just inept. Good faith, Good faith. Criminy, look at how this technology is apparenly eluding us.
Part of the stupids is that I can't compute the directions. I guess I'll have to write them down to read while I do them because I can't remember them and they don't make sense--it's like I'm reading German or something. Go to registation, yes. I've registered three times today. And I did manage to turn your name blue, Iris, and write you a message, but becuse the recipient was closed it wouldn't work. Then when I clicked on babble mouth or what ever it is on my name/password scroll, it kept saying, sorry, closed. And now apparently you guys are having a hard time.
And Kat, I read with great interest about your situation and came back to this one as if I were on a rubber band. The sleep deprivation sounds like pure hell--how do you manage to keep yourself awake and are you off all meds during this "unpleasantness?" Of course, they take their coffee breaks while they write you up, and their naps while you lie awake.
rainy.
Posted by redscarlet on October 22, 2004, at 19:03:27
In reply to Re: Are you OK, Kat? » Stressee, posted by headachequeen on October 22, 2004, at 14:34:14
Lip licking can be a side effect from medication. You may want to let your doctor know that this is happening.
Hope you feel better soon... :-)
Posted by headachequeen on October 22, 2004, at 19:04:21
In reply to Re: Re being bipolar II, Civil and on Topamax » iris2, posted by rainy on October 22, 2004, at 18:23:54
> And Kat, I read with great interest about your situation and came back to this one as if I were on a rubber band. The sleep deprivation sounds like pure hell--how do you manage to keep yourself awake and are you off all meds during this "unpleasantness?" Of course, they take their coffee breaks while they write you up, and their naps while you lie awake.
> rainy.
Rainy, the idea was to stay awake the 24 hours before the test then sleep through the six or so hours of the test... and no coffee or soft drinks, no chocolate or other stimulants during the 24 hours prior to the test...
well, now, ask anyone who has ever worked with me, I do not do well without coffee, although I am discovering that it is advisable for people on tegritol, or is that people with epilepsy (I tend to mix the two)?, to avoid caffeine...
at any rate, I managed to suffer through the 24 hours until the drive into Ottawa... and then my husband forgot that he should keep me awake for the drive and I found myself drowsing and I was terrified that I would not be able to go to sleep for the test as when I am tired a very brief nap, even five minutes, will revitalise me for a while...
that was really torture until I found myself wakening around noon and realised that I must have fallen asleep and the tech said I had been asleep for three hours or more...
then I dozed off again...
it was such relief...
I had this fear of having to go through it all again...
and this was the second time of doing the sleep-deprived eeg except the first time was without the telemetry bit and only for about 45 minutes of testing...
now, why not be sensible and do the whole test in the first place???
I know. they have to keep people in work, so they do all these tests separately and who cares how many people are tortured...
the test itself induced seizures... I was awaked during one and that was really an experience I do not care to repeat... so here I am repeating the experience repeatedly... arrgghhh
and lying there trying to go back to sleep as the techs are having their coffee breaks and chatting and having lunch and and and and...I swear I will never do it again....
never
kat
>
>
Posted by headachequeen on October 22, 2004, at 19:20:09
In reply to Re: Are you OK, Kat?, posted by redscarlet on October 22, 2004, at 19:03:27
> Lip licking can be a side effect from medication. You may want to let your doctor know that this is happening.
> Hope you feel better soon... :-)hmmmm I see my GP on Monday and shall tell him about it... I have visions of wearing my lips down to the skeleton by Hallowe'en and fitting right in!!!!
Thanks for the information...See what I mean about this place?? there is so much help to be found here...
and we need each and every person to contribute and take part...
That's not an invitation, by the way...
that's an order, folks <G>
kat the control freak
Posted by Stressee on October 22, 2004, at 20:33:55
In reply to Re: Are you OK, Kat? » redscarlet, posted by headachequeen on October 22, 2004, at 19:20:09
Wait a minute, I'm the control freak!
Kat, I hope you are feeling better. How awful for you to have to go through that. I knew something was going on.....
Rainy, I'm that way with directions and I'm not on Topamax. Isn't that scary? -L
Posted by iris2 on October 22, 2004, at 20:38:43
In reply to Re: Re being bipolar II, Civil and on Topamax » iris2, posted by rainy on October 22, 2004, at 18:23:54
Just wanted to say I already had my registration set to use babbblemail so I realy did not have to change anything. But someone babblemailed me not too long ago and it worked.
irene
Posted by Stressee on October 22, 2004, at 20:48:24
In reply to Re: Re being bipolar II, Civil and on Topamax » rainy, posted by iris2 on October 22, 2004, at 20:38:43
This is really getting to me.....I tried for the fourth time, yessssss, and it didn't work. I'm obsessed now and am determined to get this done. Hand in there for me. But, in the mean time, I guess we'll just have to keep posting. Maybe we could try the physcology board? -L
Posted by Dr. Bob on October 22, 2004, at 22:56:26
In reply to Re: please be civil, posted by bridgey1128 on October 22, 2004, at 9:03:33
Posted by headachequeen on October 22, 2004, at 23:01:24
In reply to Re: Are you OK, Kat?, posted by Stressee on October 22, 2004, at 20:33:55
> Wait a minute, I'm the control freak!
>
> Kat, I hope you are feeling better. How awful for you to have to go through that. I knew something was going on.....
> Rainy, I'm that way with directions and I'm not on Topamax. Isn't that scary? -LHa!
You are the control-freak-in-training... and with time will be good at it I am sure. In the mean time, although I am having trouble with these silly meds and seizures and all the rest of it, there is one thing I am still good at it and that is control... I have never given up my ability to control the world...
or my desire to control the world...
each day I waken with the determination to expand the reach of my control... as of this week I have reached Neptune... the rest of the universe is but a day or two away...
So, the rest of you who are out there wondering if you should participate in these conversations, wonder no longer! It is time that we heard from you...
as for control... you are learning at the knee of a master...
kat
Posted by Dr. Bob on October 22, 2004, at 23:13:32
In reply to Re: Re being bipolar II, Civil and on Topamax, posted by Stressee on October 22, 2004, at 20:48:24
> I tried for the fourth time, yessssss, and it didn't work...
I replied over at PBA:
http://www.dr-bob.org/babble/admin/20041012/msgs/406207.html
Bob
Posted by bridgey1128 on October 22, 2004, at 23:27:31
In reply to Redirect: tried for the fourth time, posted by Dr. Bob on October 22, 2004, at 23:13:32
What was the post thanks (nm) directed to me from Dr Bob? Those things confuse me. I have seen thatbefore. It's a blank post.
Posted by Stressee on October 22, 2004, at 23:34:57
In reply to Re: Redirect: tried for the fourth time, posted by bridgey1128 on October 22, 2004, at 23:27:31
I have seen that one also, and wonder what that's about. I just assumed everyone else knew and it would take me some time to figure it out. -L
Posted by castlemeadow on October 23, 2004, at 14:21:30
In reply to Re: Redirect: tried for the fourth time, posted by Stressee on October 22, 2004, at 23:34:57
Posted by headachequeen on October 23, 2004, at 16:12:46
In reply to Re: Redirect: tried for the fourth time, posted by Stressee on October 22, 2004, at 23:34:57
> I have seen that one also, and wonder what that's about. I just assumed everyone else knew and it would take me some time to figure it out. -L
I am assuming this is in reference to the one from Dr. Bob in reply to Bridgey's post? Well, it certainly has everyone's attention... at least it has the attention of those of us who are posting to the board already... now those of you who do not post, why do you not explain to us how the board works for the benefit of those of us having problems with posting? It would be a fair thing to do.
And may I add here that I woke up having a terrible time reading but that at the moment I seem to be able read with ease so am going to tackle the cryptic crossword in today's National Post... on the days when I am unable to read, thinking is out of the question as welll
And this morning when I wakened it was with the worst nausea... oh but I wanted to simply return to the world of sleep and as fast as possible but that was not possible...
have you ever noticed how unfair life is???and I am supposing that this poster is a migraine sufferer...
that is why I started my affair with Topomax. Instead of an increase of Tegretol the first neurologist put me on Topomax because I asked about migraine control -- after he snapped at me for never having mentioned migraines in the first place, but I had been referred to him because of the seizures which had been diagnosed as epileptic in nature, so ????
haven't had a migraine in almost two years and loving it
kat
Posted by NeNe on October 23, 2004, at 18:19:05
In reply to Re: topomax, posted by bridgey1128 on October 14, 2004, at 8:48:33
Question for all, hope you can help. I am really desperate! I am now up to 400mg topomax- am feeling calm , but my mood swings are from another planet !!!! Can this be equaled out somehow ?? Then I get myself so damm depressed !
Has anyone been there done that?
Posted by stresser on October 23, 2004, at 19:23:45
In reply to Re: Re being bipolar II, Civil and on Topamax » rainy, posted by iris2 on October 22, 2004, at 20:38:43
I think I have my connection, but I had to change eveything including my screen name. What a mess!! At least I have babbl mail now, but i hope I don't get into trouble with Dr. Bob for creating a new profile. Anyway, Everyone---- Things are not going well here, because M has said that the binging isn't stopping. That means the topamax isn't working at 150mg. She is really distressed and wanted me to take her to a hospital. I can't do that, of course. I really don't think there is a doc/phys/therapist that can help her, and she's beside herself. Her cloths are getting way to small, nothing is helping at all. I can't even help her....What do I do? -L
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