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Dr. Bob is Robert Hsiung, MD,
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Posted by Dr. Bob on October 30, 2004, at 1:34:18
In reply to Re: Still on topomax..... » merry, posted by rainy on October 29, 2004, at 15:28:39
> It sounds like OK--how can you lose with mountains and snow? Our kids live north of San Fransisco, Cotati, so they see the mountains but have to go to the snow.
Sorry to interrupt, but I'd like to redirect follow-ups not about medication to Psycho-Babble Social. Here's a link:
http://www.dr-bob.org/babble/social/20041026/msgs/408991.html
Thanks,
Bob
Posted by rainy on October 30, 2004, at 6:27:11
In reply to Redirect: mountains and snow, posted by Dr. Bob on October 30, 2004, at 1:34:18
OK.
rainy
Posted by rainy on October 30, 2004, at 7:59:40
In reply to Re: Still on topomax....., posted by merry on October 29, 2004, at 14:45:23
Whoopsie. I didn't mean for that last post to go to Dr. Bob--it was for the consumption of this board. I still don't know how to direct posts. It will get redirected for sure! I'm sorry.
rainy
Posted by lorilu on October 30, 2004, at 9:37:15
In reply to Re: topomax, posted by rainy on October 28, 2004, at 16:33:21
> This is for NeNe. My sense of time is all screwed up so it seems like ages since you posted. How are you doing?
> I was cognitivly bonkers at 400 mgs and mean as can be, but I blamed it on the medicine, not me. Moods were, well, more or less irritable. But then I was on Lamictal, too, and felt immediately better when I stopped that supposedly effective drug. That was more than a year ago, so my memory is sort of foggy. I do remember that 400 mgs of Topamax was not a fun time in my life. It's working now, at 300.
> You wrote on the 24th, I think, that you get yourself all depressed when your moods go bouncing around. Are you taking Topamax as a mood stabilizer? From what you wrote, things were a little topsy turvy in your life at that time.
> How now?
> rainy
>
>
Hi,
I also take 400mg.of Topamax and it wipes me out cognitively. I also take 200 mg. of Provigil but if I have some big reports or meetings with parents planned (I am a special ed. teacher)I will drop down to 200 mg. of Topamax. Last May I had 10 parent meetings and there was no way I could be in a "fog". On 400 mg. I sometimes say the wrong word or call a kid by the wrong name. I can't look stupid at these meetings, especially when my boss comes and sometimes an advocate for the kid. The day the last meeting was over I was back on 400 mg! I can feel a difference from 400 to 200. The provigil really helps stay focused, though. P.S. I take Topamax as a mood stabilizer and I also take Effexor.
Posted by rainy on October 30, 2004, at 10:22:41
In reply to Re: topomax, posted by lorilu on October 30, 2004, at 9:37:15
Hi Lorilu. It sounds like we're on similar medication regimes except I'm on desyerl. Forgetting names and words is so awful--everybody does it, but Topamax seems to exaggerate it way beyond funny. It doesn't happen as much for me at 300 mgs if I'm looking at a person, but if I'm under social stress, like in a face to face conversation, I often have to ask the other person for the word I want. Or more often than not, I say the wrong thing.
I've only been on provigil for a little more than a week so I can't tell about positive effects. I've certainly been focused on this board like I wish I were on other projects since I began it, but the only other thing I've noticed is an intermittent full body tremor. The shakes. How long did it take for you to notice the positive effects? Do you see any antidepressant effects or "mood brightening effects" as the literature says?
You say you go from 400 to 200 mgs as you need to--do you just zoop up and down or do you taper yourself? I've gone up and down at 50 mg increments and been mean as a snake going up.
Consensus on this board is that that's too fast. Patience isn't one of my strengths.What other cognitive jokes do you notice at 400? Any negative stuff with provigil? Does the Topamax help keep the effexor weight gain to a minimum?
Sorry. This isn't the Inquisition but you wrote an interesting message.
thanks for writing
rainy
Posted by redscarlet on October 30, 2004, at 10:51:37
In reply to Re: topomax, posted by lorilu on October 30, 2004, at 9:37:15
Does the provigil help with the fatigue ? My pdoc will not give me any kind of stimulant, I guess because I'm bipolar but I'm so tired all the time from the meds (I guess), not sleepy just tired. In fact I can't sleep without taking something to make me go to sleep. I'm no longer on topamax but take zonegran now, very similar drug. I was going bald, loosing tons of hair while on the topamax, and I was on it for at least two years and took all the vitamins to try to help stop/slow down the hair loss but it never helped. I'm also on geodon and wellbutrin. I was also on seroquel but I weaned myself of it, thinking it was making me tired but I'm still tired and now I have to tell the pdoc that I stopped the seroquel...ugh! The wellbutrin doesn't give me energy like it does for some, I was hoping it would and I even take 450mg of the stuff! I really need to have more get up and go. I get up every morning and first thing I do is at least one hour of cardio exercise everyday but that does not give me any more energy either but just good for my general health. There's just so much I want to do but just don't feel like doing it. I really think I need something to help me out a little. Is anyone else on stimulants? If so how are they working for you and are you bipolar.
Posted by iris2 on October 30, 2004, at 11:12:43
In reply to Re: topomax, posted by lorilu on October 30, 2004, at 9:37:15
I am jeolous. I took Topomax and it only made me more depressed. I took Provigil and it made me so anxious and nervous I ws picking the skin off my face and hands. No need to reply.
irene
Posted by merry on October 30, 2004, at 12:05:53
In reply to Re: topomax » lorilu, posted by iris2 on October 30, 2004, at 11:12:43
I take 300mg of Wellbutrin and it helps with energy and it keeps my depression at bay but it makes me anxious and irritable as heck. I too am bi-polar. I am on now on 300mg on topomax making my way up to 400mg SLOWLY. I couldn't handle the side effects. My pdoc had me going up rather quickly, 50mg at a time every 2wks. I thought I was going to die. Thanks to you guys I slowed down and I am feeling much better. I am feeling calmer now. The anxiousness is gone and my rage is gone. I think I can safely start collecting those cute little ceramic frogs I like and they won't end up smashed up against my walls anymore. It was really bad at one time. Better than yelling at my kids or my animals. I'd hate to do that.
Ps, Rainy, when I mentioned the mountains I also mentioned how the topomax was doing for me. That is still med. related, isn't it? OH well.
merry.
Posted by lorilu on October 30, 2004, at 14:50:54
In reply to Re: topomax » lorilu, posted by rainy on October 30, 2004, at 10:22:41
Hi again,
When I am 400 mg. I will ask a kid at circle time to hand me his book, but instead he might be touching his foot so I will say "Hand me your foot." Also, the joke in my class (with my aides) is everyday is Wednesday when I do calendar. Somedays I will get the day mixed up with the kids. Luckily, or not :), they are little special ed. kids so it goes over their heads and my aides and I get a laugh out of it. Also, I will go upstairs at home and then not know why and I never know where my keys are.As far as going from 200 to 300 to 400 and vice versa I do that all the time. I only went up in 25 increments in the beginning. I do not see any side effects. Isn't Topamax supposed to be a mood stabilizer? I seriously take it so I will be calm and not moody. Are you saying that on the days that I am crabby it could be related to going up and down on the Topamax and not to having a bad day at work? Usually I just find an instant relief when I go back up to my prescribed medicine instantly. Although, I just have to remind my aides it might be a tough couple weeks of "stupids"!
As far as weight. I think because I take Effexor, I have not lost a lot of weight on Topamax; however I have not gained ANY weight this whole time and that I guess is good for someone who does not exercise (well I chase kids all day). I have lost maybe a couple of pounds but after a year I thought I would be skinny! Oh well.....
The reason I take Provigil too is because I used to sleep apnea. I had a deviated septum surgery but I haven't had the followup test. I still am exhausted without the Provigil so he prescribed it. Do I have Bipolar someone asked? The Pdoc would like to say at this time OCD and an anxiety disorder, depression and PTSD. Could it be something else, everyone I guess could label it something. I do know I have an overactive brain! He would also like to start ADD meds based on the brain scan but I think I may be getting overmedicated. I didn't fill it~ I think it was Adderall(sic)?
Posted by rainy on October 30, 2004, at 14:57:31
In reply to Re: topomax » iris2, posted by merry on October 30, 2004, at 12:05:53
well, I thought so, Merry. You were talking about feeling better on Topamax which is what I was asking about. I was surprised my response was redirected after all the discussion about eating disorders wasn't.
However, I notice the ensuing messages are gone from the board and they may have disappeared to the social board. I said OK, I'd redirect my mountains and snow response to you, but I haven't the faintest idea how to do it. Do you?Iris2 told me how but here, away from her instructions, I can't figure it out.
Help! If need be, babble me.
Also, if there's anyway to shift back and forth from responding to re reading the other person's post, I'd like to know about that.
Thanks.
rainy
Posted by lorilu on October 30, 2004, at 15:01:30
In reply to Re: topomax -- lorilu, posted by redscarlet on October 30, 2004, at 10:51:37
I used to be on Wellbutrin. I really have to say that I felt that Wellbutrin did nothing positive for me. It was like I wasn't even taking it. Maybe you are supposed to feel that way but I didn't feel happier or calmer and when I went off it. I didn't get depressed or anything. Topamax and Effexor seem to work for me. The only thing is when I go above 125 mg. of Effexor my blood pressure sky rockets! I use to have low blood pressure before Effexor.
Posted by lorilu on October 30, 2004, at 15:09:15
In reply to Re: Still on topomax....., posted by merry on October 29, 2004, at 14:45:23
DOES CARBONATED DRINKS TASTE FLAT FOREVER!!!???!!
Oh how I miss diet coke. All I drink now is lemonade and gatorade. I think I would lose weight if I didn't drink 5 gatorades a day. It's the only drink that tastes good, and it has to be the blue frosted. :) gg
lorilu
Posted by rainy on October 30, 2004, at 15:13:28
In reply to Re: topomax, posted by lorilu on October 30, 2004, at 14:50:54
It sounds like you're "out" Lorilu. Do your employers have any trouble with you being on meds? I've found that most people are tolerant of Major depressive disorder, but bipolar II is another story. I've been advised to tell no one.
This makes verbal lapses rather difficult.
You seem to have a pretty good support group.
rainy
Posted by headachequeen on October 30, 2004, at 15:34:09
In reply to Re: topomaxand teaching, posted by rainy on October 30, 2004, at 15:13:28
> It sounds like you're "out" Lorilu. Do your employers have any trouble with you being on meds? I've found that most people are tolerant of Major depressive disorder, but bipolar II is another story. I've been advised to tell no one.
> This makes verbal lapses rather difficult.
> You seem to have a pretty good support group.
> rainyOh heaven, my former doctor did not want to refer me for epilepsy because of the stigma attached and because of the effect it would have upon employment...
at the time I was on maternity leave from teaching but planning to go back...
this was about thirty years ago...
when I was diagnosed as being SAD I made a crusade of the fact that depression was not something that was to be hidden in the back shed... by then I was in broadcasting and had a means from which to make my voice heard... notice I cannot think of the word I want so use many...
as for losing keys... that is normal... I never know where my keys are or where my glasses are... I have four or five pair of glasses to overcome that problem and never can find any of them... that has been a problem long before they invented topomax...
and shoes... I am always in a scramble for shoes just as we are ready to leave... and purses... oh, please...
now days and dates, we all know about that one... by the way, it is Saturday today <GG>...
but I woke up today unable to read anything smaller than 24 point font... so dizzy and nauseous ended up going back to bed...
saw the optometrist the other day... the opthamologist who said a while back that I am much too young to have cataract (his fault he made the diagnosis) and they are not ready to come out said after the surgery to my eye lids and the tear ducts that I should get new glasses; went to the optometrist who says my glasses are exactly what I need no changes needed...
When do I see him again? he asked In two weeks, well tell him I do not need any changes at all... well I wonder if the cataract thing has enhanced or whatever they do and that has caused the reading and seeing problem... the dizziness went away after I remembered to take potassium that I am supposed to take... 6 tablets a day and I forget it... fell asleep and that was that...
woke up and felt better...
so we shall see...
get rid of the cataract maybe and find out it is not an epilepsy thing...
or maybe it is tegretol causing it...
I don't know...
that is why these specialists get paid the big bucks...
still think the therapist should not have put M on the spot in front of her parents or in front of him or her as the case may be...
maybe asked her to write down her dreams... or somesuch
kat
Posted by iris2 on October 30, 2004, at 15:50:54
In reply to topomax users!, posted by lorilu on October 30, 2004, at 15:09:15
lorilu,
I could be totally off base here but I have commented that the only time I can stand the taste of Gaterade is when my body needs it, then I like it. I wonder if your elecrolites are off. It might be worth checking into. Don't know if Topomax would interfear with elecrolites but it could be something else.
irene
Posted by redscarlet on October 30, 2004, at 16:08:46
In reply to topomax users!, posted by lorilu on October 30, 2004, at 15:09:15
Yes I hate to tell you but topamax is known for makeing soda taste bad, it never goes away. I've been drinking water for the past three years and nothing else. Well a cup of coffee now and then.
> DOES CARBONATED DRINKS TASTE FLAT FOREVER!!!???!!
>
> Oh how I miss diet coke. All I drink now is lemonade and gatorade. I think I would lose weight if I didn't drink 5 gatorades a day. It's the only drink that tastes good, and it has to be the blue frosted. :) gg
>
> lorilu
Posted by headachequeen on October 30, 2004, at 20:15:40
In reply to Re: topomax users! » lorilu, posted by iris2 on October 30, 2004, at 15:50:54
> lorilu,
>
> I could be totally off base here but I have commented that the only time I can stand the taste of Gaterade is when my body needs it, then I like it. I wonder if your elecrolites are off. It might be worth checking into. Don't know if Topomax would interfear with elecrolites but it could be something else.
>
> irene
>I have to agree... desperation leads me to drink the stuff. We add it to the dogs' water in hot weather or when they are under stress and even then I feel guilty, prefer to add pedialytes because I loathe the taste myself...
I carry it when we are out but prefer plain water.. desperation as I say drives me to drink gatorade or any of those drinks...
Pepsi still tastes fine to me...
kat
Posted by reltd on October 30, 2004, at 20:41:42
In reply to Re: topomax » lorilu, posted by iris2 on October 30, 2004, at 11:12:43
I need to lose 100+ pounds. I gained 80 pounds over the last 6 years on anti-depression meds. I no longer take them, but during those years the docs insisted they would make me lose wait not gain. WRONG. I insisted I was gaining weight. They stated it must be my fault. Well, we all know now one of the side effects of many of these drugs is weight gain. Anyway, after the last 30 pounds, I refused to take anymore. I was told by my doctor Topomax would suppress my appetit. I'm skeptical, but encouraged after reading your posts. I've experienced the tingling, but don't know about the soda. I drink water. I've got an incredible thirst. What I am concerned about is an incredible feeling of bloat. I'm constantly burping and feel as if my stomach is going to explode. I also have experienced loss of breathe. It's very unsettling. I've also had problems with stomach distress (IBS). Any thoughts. This is my last chance. I don't want to have to have surgery. It's almost that feeling you have when you are in your ninth month of pregnancy and there isn't any room inside. After I belch, I feel better. Just talking gets me out of breathe.
Posted by rainy on October 30, 2004, at 20:45:54
In reply to Re: topomaxand teaching » rainy, posted by headachequeen on October 30, 2004, at 15:34:09
Kat, maybe the therapist is on Topamax and has foot in mouth syndrome. I'd love to discuss this more on babble mail, but probably not here.
You said earlier in the week that you have a mild form of epilepsy, or at least not full blown, and yet you're on all these sick making meds for it. What's worse? The malady or the cure? Could any of the medications be causing seizures?
And for you thirsty folk out there--topamax does a job on soft drinks, at least at first at least for me. Now I'm up to 12 glasses of ice water a day and know the location of every public rest room around, including those in Penn Station.
Exhausted and a little down, to bed...
rainy
Posted by headachequeen on October 30, 2004, at 20:48:44
In reply to Re: topomax, posted by reltd on October 30, 2004, at 20:41:42
> I need to lose 100+ pounds. I gained 80 pounds over the last 6 years on anti-depression meds. I no longer take them, but during those years the docs insisted they would make me lose wait not gain. WRONG. I insisted I was gaining weight. They stated it must be my fault. Well, we all know now one of the side effects of many of these drugs is weight gain. Anyway, after the last 30 pounds, I refused to take anymore. I was told by my doctor Topomax would suppress my appetit. I'm skeptical, but encouraged after reading your posts. I've experienced the tingling, but don't know about the soda. I drink water. I've got an incredible thirst. What I am concerned about is an incredible feeling of bloat. I'm constantly burping and feel as if my stomach is going to explode. I also have experienced loss of breathe. It's very unsettling. I've also had problems with stomach distress (IBS). Any thoughts. This is my last chance. I don't want to have to have surgery. It's almost that feeling you have when you are in your ninth month of pregnancy and there isn't any room inside. After I belch, I feel better. Just talking gets me out of breathe.
You didn't say what dose you are at right now.. or if you did I missed that... drinking lots of water will help avoid the kidney-related side effects of topomax so you are off to a good start...
if you are just starting, start with evening dosage... start at 25 mg for at least two weeks or until your body and system feel comfortable with the medication, then and only then move up to the next 25 increment... when you reach half the total dosage, start with morning dosage at 25 mg... so that when you reach the total dosage plan, half is taken in the evening and half in the morningalways take topomax with food... and if you have to take another seizure medication for those of you who are taking it for that reason, take the two at leaast two hours apart...
something I learned just recently...
such fun to juggle
kat
Posted by headachequeen on October 30, 2004, at 20:58:15
In reply to Re: a couple of posts back, posted by rainy on October 30, 2004, at 20:45:54
> Kat, maybe the therapist is on Topamax and has foot in mouth syndrome. I'd love to discuss this more on babble mail, but probably not here.
> You said earlier in the week that you have a mild form of epilepsy, or at least not full blown, and yet you're on all these sick making meds for it. What's worse? The malady or the cure? Could any of the medications be causing seizures?
> And for you thirsty folk out there--topamax does a job on soft drinks, at least at first at least for me. Now I'm up to 12 glasses of ice water a day and know the location of every public rest room around, including those in Penn Station.
> Exhausted and a little down, to bed...
> rainy
>Oh, rainy, you do have a way with words...
between the water for topomax and the water for diabetes and the water for tegretol I always claim that I am a washroom inspector for public health... I know every public washroom and public restroom and public powder room and every other term so used within a twenty mile radius of my house... we should form a union!!!! maybe we could get paid for thisI think we should discuss this somewhere, this being the therapists with Topamax foot in mouth syndrome... there must be others who find themselves faced with therapists with the same syndrome...
Good grief... there one is, sitting in the room with a person who suddenly wants to know what one's deepest desires for one's self is... or in the latest case I can think of, in the waiting room where there are others for other therapists as well sitting pretending to look at magazines when really they are occupying space waiting for their names to be called, he suggests as he looks one dead in the face that this should be a joint session and it would be good if one's husband came in too... and one is caught off balance trying to think of a good reason to suggest that is not a good idea...
I am trying to juggle with my feelings in these sessions, talking to a stranger, I am not sure I want to display them to someone who knows me...
good thing that in one of my incarnations I was an open-line host... I am used to thinking on my feet... my reply was feeble I am sure, but I was not ready to discuss things with the therapist really, let alone with my husband in the room...
we had just got rid of the medications and were dealing with real feelings and he wants my husband in there too????
he had the whole leg in his mouth!!!!!!
Must have been on about three thousand mgs of the stuff...
Surely M and I aren't the only ones in the alphabet with these therapists????kat
Posted by stresser on October 30, 2004, at 21:14:20
In reply to Re: a couple of posts back » rainy, posted by headachequeen on October 30, 2004, at 20:58:15
Hi everyone! I read the new posts, and they are interesting today. Let me think on this one......., but for now I will tell you that M is really thirsty also, and was from the start of topamx. Riding in the car today, she was bothered by her feet "falling asleep". What's up with that one? Do you think she should drop back 25mg? Kat- you know I'm waiting for your advice!!!
I love it that all of you can say what you want on here, because I never judge anyone for what they say. (I try not to judge at all) Isn't it amazing what we do say when our body language or "bodies" can't be seen? This is one reason this board is so theraputic for all of us. I do say things to all of you that I may not say to my closest friends. (I'm not saying all of you are not my closest friends now)
Rainy- If you tried to babble me, my computer crashed last night and we had to re-load everything. I don't think my babbles are going through to anyone either. I don't know what to do about that. -L
Posted by lorilu on October 30, 2004, at 21:52:53
In reply to Re: topomaxand teaching, posted by rainy on October 30, 2004, at 15:13:28
Right now I'm ok. To tell the truth I think I am ok for a couple of reasons. 1. I think the principal has her own issues and is probably on her own set of meds.(not kidding)2. As long as I continue to excel at my job they will overlook the little mistakes that the "dope-amax" causes. Also, not many special ed. teachers have 2 credentials and a masters so it would be hard to replace me. Parents request to have their kids in my class, go figure :)
Posted by headachequeen on October 30, 2004, at 22:00:17
In reply to Thirsty on topamax, posted by stresser on October 30, 2004, at 21:14:20
> Hi everyone! I read the new posts, and they are interesting today. Let me think on this one......., but for now I will tell you that M is really thirsty also, and was from the start of topamx. Riding in the car today, she was bothered by her feet "falling asleep". What's up with that one? Do you think she should drop back 25mg? Kat- you know I'm waiting for your advice!!!
>
The tingley reaction often accompanies the anti-seizure meds and topomax is an anti-seizure med... it will settle down ... that is the general belief... and I have to agree grudgingly as I am presently free of the tegretol tingles... even the ghastly sharp ones...
it does happen... if it is really uncomfortable then go down by 25 mg on the newest dosage for a few days and start back later... that might help...
but most of the doctors I see when I mention the tingling sensation refer to it as the tegretol tingles and nod knowlingly.... or the topomax tingles depending on which doctor it may be...
> I love it that all of you can say what you want on here, because I never judge anyone for what they say. (I try not to judge at all) Isn't it amazing what we do say when our body language or "bodies" can't be seen? This is one reason this board is so theraputic for all of us. I do say things to all of you that I may not say to my closest friends. (I'm not saying all of you are not my closest friends now)It is indeed that freedom from body language and the lack of faces that frees us to feel comfortable and to develop confidence...
too bad that M couldn't have a comfort group like this...
I still thing this is the best therapy going
>
kat
Posted by headachequeen on October 30, 2004, at 22:02:07
In reply to Re: topomax and teaching, posted by lorilu on October 30, 2004, at 21:52:53
> Right now I'm ok. To tell the truth I think I am ok for a couple of reasons. 1. I think the principal has her own issues and is probably on her own set of meds.(not kidding)2. As long as I continue to excel at my job they will overlook the little mistakes that the "dope-amax" causes. Also, not many special ed. teachers have 2 credentials and a masters so it would be hard to replace me. Parents request to have their kids in my class, go figure :)
with those credentials and abilities are we at all surprised...
and remember some of the most brilliant people often seem a little bizarre...
it hads to their mystique
kat
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