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Dr. Bob is Robert Hsiung, MD,
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Posted by iris2 on November 1, 2004, at 7:29:55
In reply to for Larry Hoover, posted by rainy on October 31, 2004, at 16:17:51
Testing this
Posted by rainy on November 1, 2004, at 9:02:44
In reply to Re: for Larry Hoover » rainy, posted by iris2 on November 1, 2004, at 7:29:55
Thanks, Larry and Iris2. As I remember now it wasn't cold turkery, she said decrease by 50 mgs for two weeks then off, but I went much slower than that and suffered. I found a UK site about benzo withdrawal and followed their suggestions, sort of. I stayed on the stuff much longer than my doctor wanted me to.
She did say quit wellbutrin and serzone cold turkey and I went off lamictal just so because I'd left it at home when we went out of town.
We are in charge of our bodies, I think, with our pdocs doing the best they can with what they've got. I can't express myself very well in her office, she's told my therapist that she's intimidated by me, and it would be $350 out of pocket for an initial visit to another pdoc, which I'd like to do. We can't afford it.
Looking at this, I realize how easy it is for me to get myself into medication related trouble because of lack of communication with the doctor, or just taking stuff into my own hands. And then whining on the board.
"Book answers?" by this I guess you mean not lab answers? A neurologist told me that Topmax effects the entire nervous system and is responsible for my declining handwriting, tendency to lose my balance, and other annoying neurological signs and symptoms. He also said they would disappear when the Topamax clears out of the body. Um, Lar, is this true and further, how does this medicine work? I don't understand the package insert, either. The mechinism of action part.
rainy
Posted by headachequeen on November 1, 2004, at 13:01:19
In reply to Re: topamx » stresser, posted by headachequeen on October 26, 2004, at 20:54:58
"Extraordinary people have always been misunderstood"
> > Albert Einstein
> > :-)
>
> These parents can be difficult to work with, so you must be a gift to these kids. -L
>
> > >
> >
> > thanks....i needed that.
> > Lori
> SEE.... Two examples of positive reinforcement from two of our members... and look at the result...
> oh you people, I love you one and all... look at the effect you can have for incredible good...
> positive reinforcement is you....
> is us...> I am so proud of you... and so embarrassed that I missed both of these wonderful moments at the times they happened...
> If this were a class my students would be throwing puppy treats at me... really they would <g> and rightly so because I always am supposed to notice these things... when clients/students respond with positive reinforcement so quickly and naturally...
> it is simply wonderful
> and look at the effect it has...
>> L and Lori you are superb...
> puppy treats for both of you...
> in our classes that is a positive joke, not meant to be rude or detrimental, by the way <s>
>
> kat who had to go back and find those because they were really nagging at me...
Posted by rainy on November 1, 2004, at 17:02:31
In reply to Re: for Larry Hoover » iris2, posted by rainy on November 1, 2004, at 9:02:44
I keep getting this post from Kat every few minutes as if it were new. Anybody else having posting problems?
rainy
Posted by lorilu on November 1, 2004, at 17:28:18
In reply to Re: for Larry Hoover » iris2, posted by rainy on November 1, 2004, at 9:02:44
Is it true about balance? I had an acute ankle sprain his summer and I seem to trip more frequently than the average person. To think about it, probably since I went up to 400 mg.
Posted by headachequeen on November 1, 2004, at 18:30:09
In reply to here we go again, posted by rainy on November 1, 2004, at 17:02:31
> I keep getting this post from Kat every few minutes as if it were new. Anybody else having posting problems?
> rainy
>It should have come only the once but I was trying to see if I could change the people it reached...
there are so many subject groups...
and some of the subject groups only reach some of us...
so it was an experiment...
that didn't work I guess...
kat
Posted by rainy on November 1, 2004, at 20:08:28
In reply to Re: for Larry Hoover, posted by lorilu on November 1, 2004, at 17:28:18
The neurologist told me that my increasing loss of balance was probably due to the Topamax. I have a smoldering bunch of neuro symptoms left over from a peripheral neuropathy that had me in clunky braces for about three years almost 20 years ago. These seemed to be getting worse, like staggering, lurching and dragging my foot, weaving around and generally appearing drunk, so I went to this nice doctor.
He said that Topamax often makes any neorological problem that you already have worse and gives you problems that you didn't have before you took it. He agreed that of course the balance issue was pre Top but he thought it was worse because of the medication. He also said that if I stopped it, and he thought I should and take lithium or something else, "there are lots and lots of drugs out there," my balance, handwriting and "ditziness" would improve.
But I would sure hate to say, yeah, your ankle is weak because of the Topamax. I'm not sure I believe him about this neurological stuff, because this neuropathy is a come and go kind of thing and I think this is just one of the times it's revving up. I really wish I didn't feel I had to tell doctors everything they want to know.
rainy
Posted by headachequeen on November 1, 2004, at 20:36:32
In reply to topamax and balance, posted by rainy on November 1, 2004, at 20:08:28
> The neurologist told me that my increasing loss of balance was probably due to the Topamax. I have a smoldering bunch of neuro symptoms left over from a peripheral neuropathy that had me in clunky braces for about three years almost 20 years ago. These seemed to be getting worse, like staggering, lurching and dragging my foot, weaving around and generally appearing drunk, so I went to this nice doctor.
> He said that Topamax often makes any neorological problem that you already have worse and gives you problems that you didn't have before you took it. He agreed that of course the balance issue was pre Top but he thought it was worse because of the medication. He also said that if I stopped it, and he thought I should and take lithium or something else, "there are lots and lots of drugs out there," my balance, handwriting and "ditziness" would improve.
> But I would sure hate to say, yeah, your ankle is weak because of the Topamax. I'm not sure I believe him about this neurological stuff, because this neuropathy is a come and go kind of thing and I think this is just one of the times it's revving up. I really wish I didn't feel I had to tell doctors everything they want to know.
> rainy
>Oh, wouldn't it be lovely if we could blame all our problems on Topomax or a medication of choice.. of course, i would blame them all on Tegretol <eveil grin>
I have days when I am unable to achieve balance but it cannot be as a result of taking the Topomax because I have even more days of achieving balance...
those unbalanced days follow the seizures as a rule... and even more often come when my blood tests show a low level or no level of Potassium. Apparently we need the stuff to maintain some sort of balance even though it is a trace element... for a former teacher and a radio announcer/dog trainer I am learning a lot about stuff I really don't want to know...I, too, have to question the idea that Topomax makes any neurological problem worse, else what is the point in using it to overcome seizures, and that is its main and first reason for existence. All the other uses that have been found are side effects really...
My handwriting/penmanship has days when it is disgustingly embarrassing as in earlier today when I wrote down an address and the 9 in 1919 appears to be another 1... thanks to the miracle of modern technology I was able to look up things on the internet and found out it is a 9 and will be going to the right address when the time comes...
and the specialist I should be seeing has a receptionist who does NOT take topomax but has a serious case of ditziness and messed up the appointments so I am referred to another surgeon to arrange to have the necessary stuff done in this century ... do we suggest that she start taking Topomax to overcome her memory lapses???
she definitely has a cognitive problem but we cannot blame it on topomax, so not every problem is topomax induced...
Meanwhile at other times my penmanship returns to its normal acceptable levels... and I can print like a fiend, something I learned in college...
along with the wondrous poem
I eat my peas with honey
I've done it all my life
It makes the peas taste funny
But it sticks them to my life
- the benefits of education, printing and the wonders of poetry...
See? Topomax has not affected my cognitive skills; my husband often wishes it had as I learned other poems in college... all about on a par with that one, the purple cow, and various nursery rhymes that I love to drag out to entertain our guests...
topomax attacks cognitive skills? he keeps hoping I have to take more of it... LOLIt is too easy to blame it all on Topomax and jump to another drug...
I have been doing some field research of my own...
if I change the hours that I take the Tegretol.. oh do I hope that my doctors esp the neurologist do not subscribe to this board ... I do not have as many of the problems that have been plaguing me... I know better than to suddenly stop taking it entirely... that would cause total chaos in my life, chaos that the topomax alone cannot handle...
but taking a minimal amount in the morning and the rest of it when I go to bed, as in all the rest of it, means that I do not have as much of the horribles that were tagging along...
it is not the Topomax that increase the neurological symptoms in my case for sure...
it is the Tegretol so would someone suggest that I stop taking it? Of course not...
Have I considered stopping it? Of course I have...
I am trying to find the journal I kept for a while with the hours we found that worked... and then will follow those hours...
for a while I tried doing without Tegretol sticking with the topomax... for two daysI had no chaos in my life...
so it is not the Topomax necessarily that causes the imbalance and the nausea and the 'generally appearing drunk'
kat the caped crusader for topomax
Posted by Larry Hoover on November 2, 2004, at 8:22:21
In reply to Re: for Larry Hoover » iris2, posted by rainy on November 1, 2004, at 9:02:44
> "Book answers?" by this I guess you mean not lab answers?
I mean I don't have clinical experience with drugs, and patients. I can look things up, and understand most of what I find, and I can translate geek to layman.
> A neurologist told me that Topmax effects the entire nervous system and is responsible for my declining handwriting, tendency to lose my balance, and other annoying neurological signs and symptoms. He also said they would disappear when the Topamax clears out of the body. Um, Lar, is this true and further, how does this medicine work?
I can tell you that a fairly common nickname for Topomax is Stupimax. It is, literally, a confusing drug, for many people.
How does it work? First, we are unlikely to know everything it does. To know that, we'd have to know how everything works, and we don't. But here is the blurb from the monograph: "Electrophysiological and biochemical evidence suggests that topiramate, at pharmacologically relevant concentrations, blocks voltage-dependent sodium channels, augments the activity of the neurotransmitter gamma-aminobutyrate at some subtypes of the GABA-A receptor, antagonizes the kainate subtype of the glutamate receptor, and inhibits the carbonic anhydrase enzyme, particularly isozymes II and IV."
The first would slow down overall brain activity. The second would have a calming effect, moodwise. The third would suppress one special type of excitatory signal. The last would suppress respiration (I think).
> I don't understand the package insert, either. The mechinism of action part.
> rainyWell, I'm not sure what that says, exactly.
Topamax is a very unique drug, structurally. It's a modified form of the fruit sugar, fructose. It readily crosses the blood-brain barrier because it probably still "looks like" a sugar to the transporters.
Lar
Posted by Larry Hoover on November 2, 2004, at 8:26:06
In reply to Re: for Larry Hoover, posted by lorilu on November 1, 2004, at 17:28:18
> Is it true about balance? I had an acute ankle sprain his summer and I seem to trip more frequently than the average person. To think about it, probably since I went up to 400 mg.
Yes, balance could be affected, as the process of maintaining erect body position is really a high-intensity brain activity. There is a coordinated and equilibrated muscular tension in at least three hundred different muscles. If the brain struggles to do that in real time, you wobble.
Lar
Posted by iris2 on November 2, 2004, at 8:32:53
In reply to topamax and balance, posted by rainy on November 1, 2004, at 20:08:28
Rainy,
That sounds difficult to deal with. I am sorry you have to go through it all. Did you not tell me the Topamax was helping you in many ways? I don't think those other meds would do the same do you?
I guess you'll have to observe if the problems are becoming worse. Perhaps (I should do this again myself) make a journal just about the medical stuff). I never am able to remember even from week to week what things changed and if they changed before the meds or only during etc. For me most meds are some kind of balancing act. I always have to decide if the positive results I get from the meds out way the negative side effects they cause. I wish I could find one that only had positive effects for me.
irene
Posted by Larry Hoover on November 2, 2004, at 8:33:03
In reply to topamax and balance, posted by rainy on November 1, 2004, at 20:08:28
> The neurologist told me that my increasing loss of balance was probably due to the Topamax. I have a smoldering bunch of neuro symptoms left over from a peripheral neuropathy that had me in clunky braces for about three years almost 20 years ago. These seemed to be getting worse, like staggering, lurching and dragging my foot, weaving around and generally appearing drunk, so I went to this nice doctor.
> He said that Topamax often makes any neorological problem that you already have worse and gives you problems that you didn't have before you took it. He agreed that of course the balance issue was pre Top but he thought it was worse because of the medication. He also said that if I stopped it, and he thought I should and take lithium or something else, "there are lots and lots of drugs out there," my balance, handwriting and "ditziness" would improve.
> But I would sure hate to say, yeah, your ankle is weak because of the Topamax. I'm not sure I believe him about this neurological stuff, because this neuropathy is a come and go kind of thing and I think this is just one of the times it's revving up. I really wish I didn't feel I had to tell doctors everything they want to know.
> rainyTopamax doesn't only affect neurons in the brain. It affects neurons throughout your body. Peripheral neuropathies are often mediated in the spinal cord. One of the ways your body simplifies the traffic in and out of the brain is to delegate some of the processing to the spinal cord. Those things you habitually do, like walking, are mostly spinal. Avoiding an obstacle while walking is brain.
Topamax will have suppressed spinal processing ability, as well. You may have recovered sufficient spinal activity to no longer have to compensate with conscious brain activity (your recovery twenty years ago), but you fell back below that threshold again under the influence of topamax. It sounds like this isn't the right drug for you. Going off it will fairly quickly clear it from the body, and I don't expect it will take too long to get your more typical functioning back.
Lar
Posted by lorilu on November 2, 2004, at 8:41:39
In reply to Re: for Larry Hoover » lorilu, posted by Larry Hoover on November 2, 2004, at 8:26:06
Thanks,
I'll be sure to tell my husband right now! :) I think he thinks I just need to exercise more.
Lori
Posted by Larry Hoover on November 2, 2004, at 8:43:53
In reply to Re: topamax and balance » rainy, posted by headachequeen on November 1, 2004, at 20:36:32
> I, too, have to question the idea that Topomax makes any neurological problem worse, else what is the point in using it to overcome seizures, and that is its main and first reason for existence. All the other uses that have been found are side effects really...
It doesn't make any neurological problem worse.....only those where hypofunction already existed. Topamax is used for hyperfunction. It reduces overall neural activity. Epilepsy is uncontrolled neuronal hyperfunction. Bipolar is thought to be regional brain hyperfunction. Positive symptom schizophrenia, likewise. PTSD, too.
And, rather that thinking of these off-label (nen-epileptic) indications as side-effects, they are serendipitous findings. Useful applications not originally sought after.
The side-effects, IMHO, are the cognitive slowing, the stupefaction, memory loss, aphasia. The brain is slowed too much, or not in the "right" areas. Maybe the dose is too high?
If someone is having problems with balance on this drug, then I'd have to suggest it's the wrong drug for them.
Lar
Posted by iris2 on November 2, 2004, at 8:47:45
In reply to Re: topamax and balance » rainy, posted by headachequeen on November 1, 2004, at 20:36:32
Kat,
To be honest I do not always get through your posts, as my attention span is that of a fly. But I try. I did read something that kind of stuck out from everything else you were saying. Being a bulimic I am well versed in low Potassium. It is something to have concern about. Potassium is stored in the stomach if that makes any difference to you. Anyway besides balance or whatever it is very important not to have low potassium. Your blood has a salt potassium balance. Your muscles need potassium to function. It is important for muscles like your heart. So do not take it lightly. If your potassium gets too low your heart will not pump! If your potassium is low or you think it might be you should take potassium pills. You can get in the grocery or drug store. If it is coming up low on blood work than you need to replenish it quickly and so the pills. They will not hurt you. If you just want to make sure it is okay without testing than eat things high in potassium. Potatoes or chips, my doc told me is great. Bananas and tomatoes are also some other foods high in potassium.
I guess that hit my nerve as I have been low several times and it can be rather dangerous.
Make sure that this is not an ongoing thing. It is not good for your muscles like I said especially dangerous for the organ muscles.
Not trying to scar you, not doubt it was just a one-time thing but I do worry.
Take care,
irene
Posted by rainy on November 2, 2004, at 9:46:06
In reply to Re: topamax and balance » headachequeen, posted by iris2 on November 2, 2004, at 8:47:45
Here's my rationale for staying on a poison drug that is probably messing with my body, although not so much this week, as well as making me stupid making me stupid and causing my spirit to tie itself into question marks. (A holistic medication)
Topmax enables me to be in better control of the buimia that has plagued me since I was 17 (i'm 62) and cut wine consumption down to 3 to five 5 ounces a week with a snack or meal with my husband or at a social gathering.
The latter is important because I spent about five years drinking vodka on the sly until I stopped in 1991. While I was drinking fairly heavily and out of control, I was also on prozac and celexa without any effect except one real suicide attempt and some serious thoughts about others. Also deep depression, alleviated only by my classes in grad school, which I couldn't finish, and my teaching job, which I loved.
It was tooth and nail against blackness and food issues, as well as stumbling and bumbling until Topmax came around.
So, despite my concerns about my personhood being changed or muted or made into somebody I'd rather not be by the drugs, I'd rather stay on than go off. Does that make sense, Lar? Topamax keeps me, now, without benefit of inebriation, from serious mood swings and frequent binging and purging. It's not rational, I know, but it has to do with quality of life. It's scary, too.
This is a week to week decision, too. It's worse than buying a new dress.
rainy
Posted by Larry Hoover on November 2, 2004, at 12:14:11
In reply to Re: topamax and balance, posted by rainy on November 2, 2004, at 9:46:06
> So, despite my concerns about my personhood being changed or muted or made into somebody I'd rather not be by the drugs, I'd rather stay on than go off. Does that make sense, Lar?
It's exactly the right kind of decision. You are making informed consent decisions. You only have to decide for yourself, and you don't need to validate your decision with others, eh?
Posted by rainy on November 2, 2004, at 15:37:33
In reply to Re: topamax and balance » rainy, posted by Larry Hoover on November 2, 2004, at 12:14:11
yeah, unless the other persons are physcians with script pads in their hands.
but you're right, enough is enough on this board.
rainy
Posted by bridgey1128 on November 2, 2004, at 18:05:40
In reply to Re: topamax and balance » Larry Hoover, posted by rainy on November 2, 2004, at 15:37:33
You know it's interesting that you mention balance Lar because I have noticed that I suddenly and without reason just sort of fall over. I'll be walking and just kinda fall to one side, like, what on earth? I am not uncordinated, I can dance, and now that I think back to it, I realize that this must be one of the side effects. Yes, this is the right drug for me because frankly, I am not willing to take anything else that is going to make me gain weight and everything else DOES. I have a tendency to gain weight on drugs so I am not willing to even TRY anything else. Not even a couple of pounds. I am only up to 200mg, so I am not on a really high dose and it works really well for me. The only side effect (other than the balance thing which I just now realized and in the past, hallucinations which I now do not have) are tingles and I have not even had those with this recent dosage upping. I also realize that the "balance thing" has come and gone so I am assuming that it wears off just like the other side effects like the cognitive effects. I must say, I will take the "duhs" and balance problems over the massive month long headaches and "brain shivers" that I had with Effexor!! I gained 20lbs coming OFF Effexor for some reason. I have been on the 200mg for a week now and I am feeling much better now. A tad more anxious at first and I have a feeling that is because of the higher dosage but I have had my Ativan on hand and that has worked. Now, a week into it, the anxiousness is starting to wane so I am glad. Does anyone else live in NC?
Posted by rainy on November 2, 2004, at 18:49:04
In reply to Re: topamax and balance, posted by bridgey1128 on November 2, 2004, at 18:05:40
Durn, Bridgey, I've just read your message and already forgotten how long you said you've been at 200 mgs. It seem like a couple of weeks ago you were going up and were feeling a little edgy--you seem calmer to me now.
Are you swinging sideways at 200 and weren't at a lower dose? You probably wrote just that. I come down the back steps to feed the cats and go sideways--or sort of bob around when I stop suddenly. It's wonderful in a store. Does that happen to you?
I don't live in NC but we had our honeymoon in the Smokies 37 years ago. I wasn't on any meds then.
rainy
Posted by bridgey1128 on November 2, 2004, at 20:24:47
In reply to Re: topamax and balance » bridgey1128, posted by rainy on November 2, 2004, at 18:49:04
I have been on 200mg maybe a little less than a week. I had started 175mg before I went back to my Dr and didn't tell him. I just went to the appointment and told him I wanted to go up and it was time to go up again. I said I hadn't had any more depression episodes, which I hadn't, and as long as I stayed away from the triggers I was ok. So as of now, I am on 200mg and doing well. :)
Posted by redscarlet on November 2, 2004, at 20:55:38
In reply to Re: topamax and balance, posted by bridgey1128 on November 2, 2004, at 18:05:40
> You know it's interesting that you mention balance Lar because I have noticed that I suddenly and without reason just sort of fall over. I'll be walking and just kinda fall to one side, like, what on earth? I am not uncordinated, I can dance, and now that I think back to it, I realize that this must be one of the side effects. Yes, this is the right drug for me because frankly, I am not willing to take anything else that is going to make me gain weight and everything else DOES. I have a tendency to gain weight on drugs so I am not willing to even TRY anything else. Not even a couple of pounds. I am only up to 200mg, so I am not on a really high dose and it works really well for me. The only side effect (other than the balance thing which I just now realized and in the past, hallucinations which I now do not have) are tingles and I have not even had those with this recent dosage upping. I also realize that the "balance thing" has come and gone so I am assuming that it wears off just like the other side effects like the cognitive effects. I must say, I will take the "duhs" and balance problems over the massive month long headaches and "brain shivers" that I had with Effexor!! I gained 20lbs coming OFF Effexor for some reason. I have been on the 200mg for a week now and I am feeling much better now. A tad more anxious at first and I have a feeling that is because of the higher dosage but I have had my Ativan on hand and that has worked. Now, a week into it, the anxiousness is starting to wane so I am glad. Does anyone else live in NC?
I'm from N.C. but live in Dallas now.
I just increased my zonegran today back to 200mgs per my pdoc visit. I'm going to see how taking it am & pm works, last time I was on 200mgs I took it all at night.
I haven't felt sleepy or tired...that's a good thing, very good thing.... :-)
>
Posted by stresser on November 3, 2004, at 7:27:38
In reply to Re: topamax and balance, posted by redscarlet on November 2, 2004, at 20:55:38
I take potassium every day! M is finally up to 200mg per day, and I am hopeful that this will start to kick in a little more for her. I don't want her to take this if it isn't going to work. Larry - I tried to order the prozac for my dog over the internet site you gave me, and they say I need a prescription for it. FOR MY DOG? This is a no win situation for my poor boy, so I am back giving him the clompipramine until I figure out something else. Any suggestions? -L
Posted by Larry Hoover on November 3, 2004, at 7:47:56
In reply to Potassium, topamax and clomipramine, posted by stresser on November 3, 2004, at 7:27:38
> I take potassium every day! M is finally up to 200mg per day, and I am hopeful that this will start to kick in a little more for her. I don't want her to take this if it isn't going to work. Larry - I tried to order the prozac for my dog over the internet site you gave me, and they say I need a prescription for it. FOR MY DOG? This is a no win situation for my poor boy, so I am back giving him the clompipramine until I figure out something else. Any suggestions? -L
I'm sorry, I thought you were working with a veterinarian on this?
Yes, Prozac requires a prescription, no matter what it's used for. The amazing thing is how cheap it is for veterinary use. I could get selegiline for 10% of what I pay for the generic. Maybe I should start seeing a vet, myself?
Lar
Posted by SLS on November 3, 2004, at 8:15:44
In reply to Re: Potassium, topamax and clomipramine » stresser, posted by Larry Hoover on November 3, 2004, at 7:47:56
> Yes, Prozac requires a prescription, no matter what it's used for. The amazing thing is how cheap it is for veterinary use. I could get selegiline for 10% of what I pay for the generic. Maybe I should start seeing a vet, myself?You might qualify - you dirty dog, you.
:-)
I couldn't believe it when I first heard this a number of years ago. It demonstrates how full of doggy-doo these drug companies are.
- Scott
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