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Dr. Bob is Robert Hsiung, MD,
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Posted by rainy on October 22, 2004, at 10:39:35
In reply to Re: Topomax » rainy, posted by iris2 on October 21, 2004, at 16:11:39
Hi, Irene. I like what you said about us all being well intentioned. It fits right in with another example of my version of foot in mouth that I'd stewed about for over a week at the beginning of the month. A woman in a small group facilitators' meeting had had her feelings hurt because I had objected (unncessarily)colorfully? strongly? dark humoredly? to some words she'd used in a job description. She'd carried her hurt around for a month before letting me know indirectly. I was annoyed and embarrassesed and very sorry and again thought "stupid Topamax," "Stupid linda."
A good thing came of it, though--we agreed to assume good faith on the part of each other and the entire group. (She thought I was dissing her, I thought she was after me). I'm going to insert this good faith thing into my small group's covenant when we meet for the first time this coming Wednesday.
So thank you for reminding me of that. As for the ritalin, I'm so far from understanding it except as a drug for kids with an attention or hyperactivity disorder (I can't remember the acronym)that I can't for the life of me think that I referred to it. I know I've wondered, casting about for alternative diagnoses, if maybe I've got the adult form, but no.
Something else you wrote intrigues me--that you can't use antidepressants because of a bladder problem--that's got to be frustrating. I haven't heard of that barrier to AD use. (Mine's not wanting to gain weight! and the meds not working.) Is it a common problem?
linda
Posted by Stressee on October 22, 2004, at 10:48:34
In reply to Re: please be civil, posted by rainy on October 22, 2004, at 9:55:28
Don't worry about being patronizing, I know I am here for advice and am happy to listen to whatever you have to say, negative or positive. I actually went back this morning and looked at some of the older posts, hoping to find more information. I do know that this drug may or may not help the BED, but for her sanity, she needs something. I know it's exasperating to not be able to help yourself, and I have a difficult time standing by and watching the pain. It's heartbreaking to listen to her say she can't stop even when she want's it so much. She says it's miserable, and I believe her. (Do you have children? I know I have not asked, or at least I don't think you have said) I think she may not be high enough just yet, or maybe never will be . I will be happy to give you my e-mail address if you would like. (let me know) That may be easier for you to ask the questions you are wanting to ask. I value your knowledge on this matter, and 12 yrs. on Topamax would give you quite a bit. -L
Posted by iris2 on October 22, 2004, at 12:09:02
In reply to Re: Topomax, posted by rainy on October 22, 2004, at 10:39:35
Linda,
It is my personal experience that most of the time what I or someone else says is well intentioned.
It was not you who brought up the Ritalin. If anyone wants to know I started taking it for hypotention for Parnate and continued to use it as a mood elevator a little and for my extreme fatigue.
Here is the explanation for all the strange meds I take. Each has a little effect on mood or energy but would not be anyone’s first choice in an arsenal for depression.
I have a rare bladder disease called interstitial cystitis or I.C. Luckily most of the time anymore I do not have symptoms except when I take antidepressants, especially ones that are stimulating that would likely help me. My symptoms are urinary frequency/urgency and sometimes extreme pain. I cannot take other types of medications too. I also cannot eat certain foods such as citrus, certain spices etc. I have a huge list of foods to avoid. My pdoc put me on Oxycontin for severe pain I started having from the I.C. which I still take for mood (another odd one). My brother is in naturopathic school and we spoke and decided to try an elimination diet and a regimen of supplements. For 9 months I stayed strictly on this diet and took all the supplements and every symptom disappeared. Except for when I took medications. I am kind of proud of myself that I had enough self disciplin to do this. If the symptoms come back to any great degree I will go back on the supplements and although I still am fairly strict with my diet I could do better. It was even more difficult because I have an eating disorder and messing with my diet is a big deal. I went off of the supplements because I was supposed to taper off of them after 6 months so I followed this whole thing perfectly. Because of the meds I am having some symptoms but not bad although I am taking the Oxycontine for them again. I used to have what is called DSMO therapy for my bladder. It is when the doctor distills a small amount of DSMO ( a chemical solvent) into my bladder. It worked but I think it might be the reason I started having pain with the disease as I had never had pain as a symptom before getting these treatments. I would rather go the natural route especailly since it worked so well and for so long. I know this is more detail than you wanted but I have a hard time knowing how much is enough. Sorry!
irene
Posted by rainy on October 22, 2004, at 12:22:37
In reply to Re: Topomax and bipolar II, posted by redscarlet on October 21, 2004, at 11:43:10
My posts keep flying away!! This is #2.
Sure, Stressee, let's exchange e-mail addresses. How to do? Flat out on the board? I've forgotten, how confidential is this site? It's important that this disorder remains undercover with my husband's employers for at least another year. Right now I hope they assume that I'm just odd, or difficult.
Let's see if there's a way we can do it confidentially. If not, maye you'd better give me your e-mail address. I'm sorry, I'd rather just splash it all over the board, but I'm a tiny tiny public figure in a benignly hostile enviornment.
Something else--A Big Mistake. (I sound like Pooh.) I've been on Wellbutrin since 2001, the year I stopped drinking, and Topamax since 2002. I've written other dates elsewhere but these are The Truth. I swear.
I've had anorexia/bulemia for 47 years and finally found help with Topamax 2 years ago. I will never go off, if I can help it, even if I insult people from here to wherever.
Dr. Bob, how do we exchange e-mails without blowing our cover?
rainy
Posted by rainy on October 22, 2004, at 12:41:35
In reply to Re: Topomax, posted by rainy on October 22, 2004, at 10:39:35
oopps. Sorry, Redscarlett, I was responing to stressee rather than you in that last post, although you have been on my mind.
You wrote a couple of days ago that a lot of bipolar II people take antidepressants as adjuncts to mood stabilizers--that's my understanding, too. Apparently, according to the literature, wellbutrin is one they're willing to try along with some others. The only ones that have worked for me have been wellbutrin, serzone and desyrel. I hope they keep working on some other good possibilities.
rainy
Posted by iris2 on October 22, 2004, at 12:47:47
In reply to Re being bipolar II, Civil and on Topamax » redscarlet, posted by rainy on October 22, 2004, at 12:22:37
Rainy,
If you change your profile so that you can recieve "Babblemail" then you do not have to post your email for all to see. I am interested in exchanging emails with you about the eating disorder stuff. I thought I had read you say something about an eating disorder. I am interested in conversing with someone else with this dreaded disease. I have had it for 30 years. If you are interested you can go to one of my posts (iris2) and afer the word post my nmae is in blue, just click on that to babble me and then you can write your email address. If you are not interseted with me you can also do this with anyone you choose if one of you can be babblemailed.One can exchange email addresses on the board if one choooses or you can change your profile so that someone can "Babblemail" you. That way knowone but the person "babblemailing" you, you and perhaps the administrators of the site will see your email address.
irene
Posted by rainy on October 22, 2004, at 13:24:42
In reply to Re: Re being bipolar II, Civil and on Topamax » rainy, posted by iris2 on October 22, 2004, at 12:47:47
OK, here is a seriously dumb question. Where do I find my profile to babble it? And Stressee, do you want to do this? I assume it means we can still post on the board. (Yes, sure, I'd like to Irene.)
rainy
Posted by Stressee on October 22, 2004, at 13:27:45
In reply to Re: Re being bipolar II, Civil and on Topamax » iris2, posted by rainy on October 22, 2004, at 13:24:42
I'm assuming we're both on here at the same time. I just figured out how to get babble mail, so that's done, I hope. I would love to do it, so please let me know if it doesn't work for you. This is open to the entire group, I will be happy to hear from you. -L
Posted by Stressee on October 22, 2004, at 13:29:19
In reply to Re: Re being bipolar II, Civil and on Topamax » rainy, posted by iris2 on October 22, 2004, at 12:47:47
Kat, I haven't seen any posting from you and am wondering if you are ok? -L
Posted by Stressee on October 22, 2004, at 13:33:56
In reply to bipolar and antidepressants, posted by rainy on October 22, 2004, at 12:41:35
Rainy, you have to go back to the registration and update it. They will then send you back a password to confirm the update,and you should be good -to- go. -L
Posted by rainy on October 22, 2004, at 13:38:06
In reply to Are you OK, Kat?, posted by Stressee on October 22, 2004, at 13:29:19
Yeah, I've been wondering about that, too. You seem to be really quiet.
Also, after having seen my profile four times too many today, I can't get the danged thing up again. And Iris, I wrote you a message, but you aint on! try try again. You next, stressee.
Nothing about topamax here.
rainy
Posted by rainy on October 22, 2004, at 13:49:13
In reply to Re: Are you OK, Kat? » Stressee, posted by rainy on October 22, 2004, at 13:38:06
Gaaaaaa!!!! I don't know how to do it. I can't get anybody's name to turn blue. I can't find my stupid profile. I have to go pick up some books. Maybe it'll be better when I get home. This #$%@#.
rainy
Posted by iris2 on October 22, 2004, at 13:56:39
In reply to Re: Re being bipolar II, Civil and on Topamax » iris2, posted by rainy on October 22, 2004, at 13:24:42
Did not sound thrilled about exchanging emails about eating disorder. Don't worry if your not interested, I will not take it personally.
Okay don't say I never did anything for you. I did the whole process to make sure I knew what I was talking about before I put my foot in mouth.
Here it is:
Go to register-go to update registration- update your registration in any way you want or do not change anything-when you get to the question about do you want "babblemail" click yes- in less than a minute you will recieve an email with your new registration number-click on the link in the email and fill in the confirmation number with your posting name and password- you can now babblemail and post on psycho-babble.irene
Posted by iris2 on October 22, 2004, at 14:24:01
In reply to Re: Are you OK, Kat?, posted by rainy on October 22, 2004, at 13:49:13
Okay, I see I wrote my post after you frustration. I think it will help you though. When you register or update your registration which is on the Psycho-Babble page below the Amazon.com link the fourth row down first word. Click register then update registration and you get to the update page. There is the word "Babblemail" and two circles next to it. One says no the other yes. Click yes. You now have babble mail. If you want to try it first go to one of my posts and click on my name which should be in blue. )Unless you have to have it first)You can babblemail me and I will post that I recieved it.
irene
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... :-)
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