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Dr. Bob is Robert Hsiung, MD,
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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
Posted by bridgey1128 on November 3, 2004, at 15:02:28
In reply to Re: Potassium, topamax and clomipramine » Larry Hoover, posted by SLS on November 3, 2004, at 8:15:44
It's interesting, and a little scary, that a lot of Dr's start out in Vet school and flunk out and so they become medical Drs!! Vet school is VERY VERY difficult. I had a friend of mine just graduate in May of this year and she had STRAIGHT A's all through high school, plus being Valedictorian. When she went to NC State, she also made very high grades , mostly A's a couple of B's and it STILL took her an EXTRA year and a half to get into Vet school!! I was flabbergasted. She finally got her Doctorate this past May so I called her Docta Jones! Docta Jones! You know..like in Indiana Jones and the Temple of Doom? Short Round. Then she got married....her married name is, of ALLLL things...SMITH!!! AYE AYE AYE! Her roommates name was Smith and got married to a Jones. They had a big laugh about that. But anyway, Vet school is HARD HARD HARD. I guess the drugs are cheaper because GOd knows everything else they charge you for isn't!! Trust me, I know! We have 6 cats, 2 dogs, a hamster and 2 hermit crabs!
Posted by FionaJ on November 3, 2004, at 17:07:29
In reply to Re: Potassium, topamax and clomipramine, posted by bridgey1128 on November 3, 2004, at 15:02:28
> It's interesting, and a little scary, that a lot of Dr's start out in Vet school and flunk out and so they become medical Drs!! Vet school is VERY VERY difficult. I had a friend of mine just graduate in May of this year and she had STRAIGHT A's all through high school, plus being Valedictorian. When she went to NC State, she also made very high grades , mostly A's a couple of B's and it STILL took her an EXTRA year and a half to get into Vet school!! I was flabbergasted. She finally got her Doctorate this past May so I called her Docta Jones! Docta Jones! You know..like in Indiana Jones and the Temple of Doom? Short Round. Then she got married....her married name is, of ALLLL things...SMITH!!! AYE AYE AYE! Her roommates name was Smith and got married to a Jones. They had a big laugh about that. But anyway, Vet school is HARD HARD HARD. I guess the drugs are cheaper because GOd knows everything else they charge you for isn't!! Trust me, I know! We have 6 cats, 2 dogs, a hamster and 2 hermit crabs!
One of the reasons I can think of why vet.drugs are much cheaper may be because of their registration process which is much easier than meds for human use. I know about 5 years ago the average figure was $260 milj dollars to get a drug registered for human use. And as you know many of the drugs used in vet.-meds were trialed for human use first, thus being already tested in animals of some kind as this is the trial that needs to be successful before the registering authority will allow human trials. Thus making everything so much cheeper.
Posted by rainy on November 4, 2004, at 13:55:11
In reply to Re: Potassium, topamax and clomipramine, posted by FionaJ on November 3, 2004, at 17:07:29
FionaJ, I think anybody who choses to work with animals over people has got to be smart.
Kat, you OK? And have you noticed hair loss with tegretol? A friend has started trileptel for trigeminal nerve pain and is wondering about that possibility.
rainy
Posted by stresser on November 4, 2004, at 18:22:46
In reply to Re: Potassium, topamax and clomipramine, posted by FionaJ on November 3, 2004, at 17:07:29
I asked my vet for a prescription for the doggie prozac, and I was told that there isn't such a thing. I'm sure you can emagine my reply, and now he says he's looking into it. He has to call a university that has a vet. school to find out what else we can do for my baby boy. I am flabberghasted at how some dr. and vets. won't even listen to patients. I saw the darn stuff on the internet!!!!!#$*#!&&%%.......ok. This only adds to my wonderful day, but I hope you all are doing well. I swear the darn topomax isn't working very well for my daughter. I think I'm ready to end the topomax medication, because if it were going to help, I think it would have started by now. There's not really much difference and I can't figure out why. Any theories? -L
Posted by rainy on November 4, 2004, at 19:19:28
In reply to Re: Potassium, topamax and clomipramine, posted by stresser on November 4, 2004, at 18:22:46
what does it say on the package insert about pediatric use? And maybe there are other factors besides pure and simple hunger at work here? Does the doctor think she's been on it long enough?
Your comment about your vet reminds me of how we really have to be informed about what's out there for us and our animals because the providers often just don't have time to keep up.
rainy
Posted by Larry Hoover on November 5, 2004, at 9:27:07
In reply to Re: Potassium, topamax and clomipramine, posted by stresser on November 4, 2004, at 18:22:46
> I asked my vet for a prescription for the doggie prozac, and I was told that there isn't such a thing.
Show him the website?
Lar
Posted by rainy on November 5, 2004, at 11:59:46
In reply to Re: topomax and teaching, posted by headachequeen on October 31, 2004, at 12:35:05
Kat, are you OK? and Bridgey?
rainy
Posted by headachequeen on November 5, 2004, at 12:40:08
In reply to Re: topamax and balance » headachequeen, posted by iris2 on November 2, 2004, at 8:47:45
> 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
>Irene, I am reading posts at random today and this is the first post I read... and it is probably the most important one I shall read...
have just come home from hospital...
despite the increase in potassium pills (taking six a day now and eating oranges and bananas and anything else that has potassium in it ) when they did blood tests, there was no potassium in my blood... and they were taking blood from me constantly...
when I was finally conscious and coherent I demanded to know who was getting the potassium I was taking...
they told me that all the water I drink because of the diabetes and the anti-seizure meds (tegretol and topomax) flush it out of my system)
so they brought me glasses of what looked like orange Crush and had me drink it... concentrated potassium... tasted like the worst thing I can think of... twice a day I had to drink this stuff... and the only way was to drink it down fast and then try to keep it down... the elderly lady in the next bed, a Francophone, and I had a great time making jokes about it except the nurse understood French and stood there until I drank it all...
I did not realise until your post how important it is though... thought it just helped maintain balance...
the hospital pharmacist came around yesterday and we had a chat about my meds and the new meds they were introducing... finally a reduction in tegretol but a new one introduced to try and change the pattern...
She told me that the potassium levels were dangerously low and said that if the magnesium levels were low then the potassium levels would never be stable... next thing I knew there was a tech back to take more blood...
One good? thing about it, I have lost about seven pounds so there is something positive come out of it all...
but no one actually explained the whole need for potassium just that it would keep me from getting dizzy...so thank you Irene... you are an incredible help and just at a time when I really needed the guidance...
kat
Posted by headachequeen on November 5, 2004, at 12:49:49
In reply to topamax and balance, posted by rainy on November 1, 2004, at 20:08:28
> 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.
> I really wish I didn't feel I had to tell doctors everything they want to know.
> rainy
>Interesting, to think of the attitude toward topomax ...
having just spent the past four days in hospitals... 24 hours of them unaware of who I was or where I was or what day I was or anything else...
while they changed several of my medications,and added a few, some for the long haul and some in an effort to stabilise things, Topomax was not touched... the neurological team left it and the dose I was on as it was...
and I found out today as I was being released that the pain above my eye is a nerve and I forget what they said about it ... just relieved it is not related to the epilepsy stuff <s>... that Topomax is the drug of choice for treating it, tegretol the second, and another anti-seizure the third...
...
there were several of them... they kept asking me how many fingers I saw and I had a hard time with that... heck when I came to I had no idea what day it was, so I have no idea how many of THEM there were LOL but all of them approved the Topomax and are looking as a team for alternatives to Tegretol...
At no time did I hear any criticism of it... but I was off tegretol for the whole time I was there and only started back on a lower dose the morning I was to leave; this evening will be my second try at it again with the new drug introduced at bedtime...
so not everyone is against it...
kat
Posted by headachequeen on November 5, 2004, at 12:53:45
In reply to Re: Potassium, topamax and clomipramine, posted by FionaJ on November 3, 2004, at 17:07:29
> successful before the registering authority will allow human trials. Thus making everything so much cheeper.
>This is not the place for this discussion... but I have to get in my two cents...
I breed show and agility and tracking dogs... and they get the best and nothing less in everything from diet to vet care...
and it is less expensive to get human medical care and drugs than it is to get care for them
just ask my doctor.. he bought a pup from me and every time I see him he tells me how many patients he has to treat to pay for a vet visit or how many shots he can give to kids for the cost of one puppy shot...
and every time I feel guilty
kat
Posted by rainy on November 5, 2004, at 13:05:48
In reply to Re: Potassium, topamax and clomipramine, posted by FionaJ on November 3, 2004, at 17:07:29
Well, I'm sure not wondering any more Kat, good to have you back. About that nerve pain--was trileptal one of the other meds suggested for treating it? It's sort of a cousin of tegretol. And, relentlessly, (me asking) have you noticed any hairloss on tegretol?
Your experience has put the fear of at least one of the gods in me--I have taken low potassium levels very lightly.
rainy
Posted by headachequeen on November 5, 2004, at 13:08:01
In reply to wondering, posted by rainy on November 5, 2004, at 11:59:46
> Kat, are you OK? and Bridgey?
> rainyI am going to be OK... I am going to be fine...
It may not be for a couple of months... but I am going to be the finest healthiest happiest person you ever knew...
right now I am the scaredest person you ever knew and may soon be calling my psychologist just to talk about fear and all that...
and I swore I never would need him again...
however I shall also be back on line driving you all crazy on a regular basis too...not only that but I have started two new meds or will be starting them this evening and one of them, have not picked up the other yet, according to the print-out has appetite killing propensities...
oh joy ...
that is a pleasing thought right there...
at the moment I am planning to spend a lot of time in bed reading... doing very little...
checking my computer occasionally...
I have black eyes, and my nose is bruised and puffy from the ambulance attendants who were determined that I would wear their oxygen masks...even unconscious I was determined that they were trying to stop me from getting air <g>...
and the second ride was almost 70 miles to a larger hospital with a neurological clinic so it was a longer fight...
I am bruised all over and really sore...
and have taken the pledge that I shall have none of these generalised seizures ever again...
this is the fourth of the tonic clonic seizures I have had since the end of August and while the information they gave me to read when I was leaving today says that they should not last more than a minute or two I was out for almost twelve hours and then in and out for another ten or so...
not a fun thing... the worst part was for my husband...
he was conscious through it all and says I took thirty years off his life... I believe it. He looks worse than I do...
If it weren't for the learning experience and for the possibility of losing tegretol I would have preferred to miss the whole thing believe me...
when things finally settled down Tuesday night, one of the things I really missed was you people...
wished I had my laptop... figured you would help make it make sense...
Irene already did with her info about potassium...
each time I drink this awful stuff I will remember all the damage lack of potassium can do and soldier through...
kat
Posted by headachequeen on November 5, 2004, at 13:19:21
In reply to no longer wondering, posted by rainy on November 5, 2004, at 13:05:48
> Well, I'm sure not wondering any more Kat, good to have you back. About that nerve pain--was trileptal one of the other meds suggested for treating it? It's sort of a cousin of tegretol. And, relentlessly, (me asking) have you noticed any hairloss on tegretol?
> Your experience has put the fear of at least one of the gods in me--I have taken low potassium levels very lightly.
> rainy
Thanks, rainy, it is good to be back... although I am heading back to bed soon <g>
I am NOT going to sleep though... terrified to do that...
trileptal is not the one my doctor mentioned... it started with n actually but he does not want to introduce any other anti-seizure meds into the mixture right now... actually if the pain were not such a constant and if it were not such a frightening thing for me he would leave it alone ...
but he prescribed an old anti-depressant whose name I can't remember; apparently it works on these nerve things... it is low dosage and I am on 10 mg for a week; if it doesn't work in three days I can go up to 20 mg and I am to see him in two weeks...
I am seeing my orthopaedist on Monday... the ambulance gurneys and the emerge gurney in Ottawa for several hours did a real number on my back and hip; I am going to see if he will do accupuncture and get rid of it that way now that I know it is not related to that disaster of Monday...
that had me really concerned;as for tegretol and hair loss oh yes... there is much more hair loss with it in my experience than with topomax ....
but with the vitamins and the biotin and the specialty shampoos it stopped and then the system seems to adjust. I use a lot of wax and putty and stuff on my hair and I don't seem to lose hair any more than any one else... or my stylist would tell me, believe me!!!!
But at first I did and I thought that Tegretol was going to make me bald...
and it causes nausea... then the tech doing one of the telemetry eeg tests told me that was because I was not taking it with food... same with topomax... take it with a small bit of food a banana or an orange not a huge meal ... and always at the same time and always twelve hours apart, the doses so there is a constant amount in the blood stream
and the time should be a constant... that I learned this week...
eight in the morning and eight at night... then the blood stream meaintains a constant level...
and if anyone else is on both, take the two, two hours apart...
here endeth the lesson <g>
kat
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