![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1467 to 1491 of 1838. Go back in thread:
Posted by challenged on March 13, 2005, at 5:13:24
In reply to Re: topomax and weight loss, posted by TylerTor on March 13, 2005, at 0:00:21
> Give me a break!!! I thought this was a forum to talk about legitimate use of Topomax for pain or other conditions. But, really, 'cuz your man dumped you and you can't deal with it and now your projecting that on to your son who's away at college. Get a grip, girls!. Give up the meds, start a safe and sane exercise program, get yourself out of the house and stop crying about some guy who only wants to be "the best of friends". Does anybody out there have a real problem that they're using Topomax for. There are plenty of programs out there to help one deal with weight but to sincerely compare your "lost love" pain with the pain of herniated disks or other physical conditions. And by the way, if you're not eplipetic, or experiencing seizures for some reason other than heartbreak, why on earth are you taking 300-400 mg of Topomax. Read up on the meds you take!!!!
>Tyler you seem to be lacking refinement or grace when replying to why my DOCTER prescribed topomax to me for a condition that I have, that you apparently know nothing about. Furthermore my lifetime of medical charts are not going to be posted here. Your comments were completly devoid of wisdom or good sense. For your information, my son is a professional trainer at 24 hour fitness and I go to the Gym..he doesn't live at home but
here in town and I excercise and I am on a healthy diet. IDo not take 300 to 400 mil of Topomax I just started them. I feel that is moreinformation then you need and unless you are a practicing medical advisor of sorts I suggest that
when you decide to become a copywright that you read the material and understand it before you decide to reiterate on it. You need to be more intuitive to the clarity of an outline. Defining what I just said, just in case you are not able to "catch my drift" a concise explanation of the total meaning or superior definition is only for those who care to show concern for the feelings of others. Each of us hangs from our own individual frame and within that framework is our physicality, our mentality and what has brought us to use the meds we are taking and to each of us the reasons may be different and the effects day to day life has on us equally as unique. You haven't the right to make justications about myself or any of the women who have been quite helpful to me through their postings as to their individuality or medical usage of this drug.You might say, You pushed my button. I am not a person of subnormal intelligence. I am only concerned with the effects from the medication and one in particular is weight gain. These postings are here to provide assistance as well as provide a useful function to be able to ask the questions we want and communicate what we want to within guidelines not to offend anyone. You do not know me and I take offense to your assumption of the reason why I am on topomax. I can only say that I feel that these women I have connected with on here have actually been quite helpful and understanding and maybe you should have read my first posting before you have decided to be so uncompromising.
I speak only for myself here and I have drawn this conclusion about a person who speaks out without reservation as you do. "Affected by a disorder of the mind".......could that be your prescription?
Posted by challenged on March 13, 2005, at 5:20:09
In reply to Re: topomax and weight loss » rainy, posted by headachequeen on March 12, 2005, at 22:43:00
Thanks headachequeen.......keep your 2 cents coming because they certainly are a breath of fresh air after reading tylers unscrupulous comments. I will definitely keep in mind the dosage increase as I was unaware of that. Nice to have connected with you and will keep in touch.......Nettie
Posted by headachequeen on March 13, 2005, at 9:05:03
In reply to Re: topomax and weight loss » headachequeen, posted by challenged on March 13, 2005, at 5:20:09
> Thanks headachequeen.......keep your 2 cents coming because they certainly are a breath of fresh air after reading tylers unscrupulous comments. I will definitely keep in mind the dosage increase as I was unaware of that. Nice to have connected with you and will keep in touch.......Nettie
Nettie, I am not sure why you are taking Topomax -- shall have to go back and read the posts I missed while dealing with yet another bout of statis epilepticus...
in case you are not familiar with the delightful experience, it is a period of several hours when one's body is racked with seizure after seizure, one immediately following the other, no respite in between...
I could go into some severe and ugly not to mention embarrassing details to really educate you, but shall spare myself those parts.
During this twelve hour period the body reaches temps around 105 Fahrenheit, risking brain damage that is irreversible, not to mention damage to other organs... minor things like kidneys, liver, heart, and the like...
During this the patient is usually comatose.. thank heaven, otherwise the whole thing would be truly unbearable. I do remember coming to and demanding a pair of socks because my feet were cold the first time and the incredible thirst but being unable to have even a sip of water because of the tests that it might interfere with; instead they moisten your lips with this vile tasting stuff on a swab...
I'd rather be thirsty and unconscious...these episodes can be caused naturally, but in the latter case it was caused because there was no warning accompanying the antibiotic I was taking...
apparently, like aspirin, it increases the effect of one of the anti-seizure meds I take until one has the effect of ten times the dosage and bang...
statis...oh, it is so much fun....
not to mention that my gift from my God, my treasured uncle who has the same rare type of epilepsy that I have went into statis during surgery a few weeks ago and died before they could control it...
what Tyler is trying to say is that while weight control and other side effects that are medicinally helpful from Topomax do happen, it is first and foremost a drug developed to deal with seizures and epilepsy and like all aeds a dangerous drug to play with...
I guess I am no longer a breath of fresh air, but I am breathing fresh air a little longer...
twice within months I get to celebrate the fact this time because my primary care physician recognised the symptoms from the last time and jumoed in and reacted instead of waiting to ship me out to the city...a third time I might not be so lucky...
yes, Topomax helps take off weight... but it is a side effect not the primary intent..
yes, it helps with migraine... but it is a side effect...
the other uses I am not sure of...
the top two I know of only because the last neurologist I had was the one who led the research into migraine (knew precious little about epilepsy though I was better off with the one I had been seeing since childhood except he retired) and my present one did the research into weight loss...
the rest I am not aware off...but I do know one has to treat these anti-epilepsy meds with a great deal of respect and be darned careful why one takes them and what one does with them....
They are wonderful things and terrifying things...
remind me of fire.
kat
Posted by challenged on March 13, 2005, at 13:22:58
In reply to Re: Topamax: weight loss/mild depression, posted by jen820 on March 6, 2002, at 13:45:48
> Mel1234,
> Yes, my doc today just put me on Topomax in addition to the Wellbutrin -- the Topomax is for weight loss purposes only. I am also interested in knowing of side effects of using the two together....any info would be helpful.
>
> My other question is if Topomax can be used for mild depression (my dx), then why do I need to be on both Wellbutrin and Topomax?? Any one in the same boat?Hi I was just wondering if you even will get this message since I am reading up years later since you posted this. I happen to have just started the same meds and was wondering the exact same thing. Could you let me know how you are doing and if in fact they worked for you? Thanks do much......Nettie
Posted by Dr. Bob on March 13, 2005, at 14:47:25
In reply to Re: topomax and weight loss » TylerTor, posted by challenged on March 13, 2005, at 5:13:24
> 'cuz your man dumped you and you can't deal with it and now your projecting that on to your son who's away at college.
>
> TylerTor> you seem to be lacking refinement or grace ... Your comments were completly devoid of wisdom or good sense.
>
> challengedPlease don't jump to conclusions about others or post anything that could lead them to feel accused or put down.
If you or others have questions about this or about posting policies in general, or are interested in alternative ways of expressing yourself, please see the FAQ:
http://www.dr-bob.org/babble/faq.html#civil
Follow-ups regarding these issues should be redirected to Psycho-Babble Administration. They, as well as replies to the above posts, should of course themselves be civil.
Thanks,
Bob
Posted by challenged on March 13, 2005, at 16:41:29
In reply to Re: please be civil » TylerTor » challenged, posted by Dr. Bob on March 13, 2005, at 14:47:25
> > 'cuz your man dumped you and you can't deal with it and now your projecting that on to your son who's away at college.
> >
> > TylerTor
>
> > you seem to be lacking refinement or grace ... Your comments were completly devoid of wisdom or good sense.
> >
> > challenged
>
> Please don't jump to conclusions about others or post anything that could lead them to feel accused or put down.
>
> If you or others have questions about this or about posting policies in general, or are interested in alternative ways of expressing yourself, please see the FAQ:
>
> http://www.dr-bob.org/babble/faq.html#civil
>
> Follow-ups regarding these issues should be redirected to Psycho-Babble Administration. They, as well as replies to the above posts, should of course themselves be civil.
>
> Thanks,
>
> BobDr. Bob,
My sincere apologies for anything seemingly to be uncivil directed to Tyler. His terminology when reitorating on my messages made me feel as though I was lacking intellectual acuity and that is not the case here. When he said, "'cuz your man dumped you and you can't deal with it and now your projecting that on to your son who's away at college." This was speaking of two men in my life that I love and respect and the way he used slang and referred to them as if they were an excuse for my medically prescribed drugs and condition was not intended to help me in any way that I can see it being beneficial. To me it seemed to be lacking good old fashioned kindness. Or maybe it was the way he projected it. Again, I apologize......Nettie
Posted by proserpine on March 14, 2005, at 12:57:39
In reply to Re: joining the topamax club, posted by maaron71 on February 16, 2003, at 15:08:50
hi there.
i am new here.
i am also new to topomax.
i have been reading the threads here on topomax. i can identify very well w/ some of the side effects noted, specifically loss of concentration & the "motor oil" effect w/ carbonated drinks. oh heavens!! tastes like sludge & then there is this feeling of fizz at the end..... i have spent both a lot of time living on diet coke & well-- thinking-- i am glad my days of advanced degrees are over-- but my days of -thinking- are not--
i dont know if anyones days of thinking ever are.
i have been trying to test myself to see if my cognitive reactions are down & they definitely are. & that is driving me crazy.
since i am incredibly medication resistant (or perhaps medication-blind (i was once on effexor, &, deciding it was doing nothing except giving me an ulcer i suddenly went off of it. remind me someday to tell you about effexor w/drawal. i discussed this topic w/ a friend of mine in the know on both issues & she agreed that effexor w/drawal is, in some ways, -worse- than -heroin- w/drawal)) i was put on a dose of 100-200 mg topomax per day. today i cut it down to 100 mg per day, as i just cannot tolerate the 200 mg-- i couldnt possibly drive taking this dose.
as goth as i look (which would be uber), i was never a big recreational drug user & the only thing i can compare topomax to would be the time a friend of mine gave me a medical marijuana brownie (her use of medical marijuana was particularly iffy) &, again, med-resistant (or med-blind) that i am, after hours it was doing nothing, so i took another bite & i was in outer space, i walked across the street & thought i was across town-- this effect lasted for 3 days!! it was HORRIBLE!! & so topomax.
does this go away??
a different friend of mine, a little post the abovenoted experience offered me yet more marijuana. i demurred saying that i didnt like it as it made me confuses. & so topomax. he said that was what it was -supposed- to do.
okay, so some people would -like- this feeling. but i DONT.
remember, the last topomax i took was yesterday at about 5pm. if i took it today, this would be written in a far more confused manner.
HELP!!
Posted by proserpine on March 14, 2005, at 14:30:35
In reply to Re: topomax pain, posted by rainy on March 8, 2005, at 6:35:53
i am sorry, i am having a difficult time following the threads properly.
is topomax also used for -treating- nerve pain or is it known for -causing- nerve pain??
i should have noted in my first post, but forgot (now as the topomax has begun to leave the building (known as my body) my ability to think is returning), i have trigeminal neuralgia, which i suppose is somewhat comparable to a lot of the nerve pain i am seeing mentioned, except it is in my face & is now being treated only by neurontin (gabapentin), which is also used to treat depression (as is the topomax, for which it is being used on me, as was the somewhere abovenoted (other post) effexor). could i get percocet, i wouldnt bother w/ any of it.
as far as i can tell, & tell i can, the topomax is making the headaches WORSE. trigeminal neuralgia is considered "the worst pain known to humankind" (or somesuch, as quoted from the trigeminal neuralgia website). the neurontin holds it down, so i just get --echoes-- of "the worst pain known to humankind" from the incompetence-&-outer-space-inducing topomax.
i am fond of all of my doctors. but they are blindsided by the hmo system under which they work. so it will be an endless cycle of peculiar medications i think. i just would like to know how to head off the worst of the side effects if at all possible-- right now all i can eat is pineapple & jalapeno pepper pizza & water-- & driving is, as they say, right out.
is anyone else here having similar problems?? nobodys problems can be -exactly- these. i mean, that would be -too- funny.
Posted by rainy on March 14, 2005, at 15:03:10
In reply to Re: topomax and weight loss, posted by TylerTor on March 13, 2005, at 0:00:21
Hi, Tylor-Tor, sorry to be so late getting back to you. I was a little surprised at the strength of your response--sounds like I
stepped on your toe or something. Sorry about that.
I'm taking such a high dose of Topamax because I use it as a mood stabilizer; I'm bipolar II. As you probably know, Topamax, like many of the other anticonvulsants, is being used to treat bipolar mood swings as well as the seizures of epilepsy. As a mater of fact, Topamax is probably being prescribed off lable for more conditions than the manufacturer ever dreamed of: migraine headaches, eating disorders, and treating alchoholism, although I think this is still in the experimental stage and then you've brought up the pain issue.
When I first developed an autoimmune peripheral neuropathy in the mid 70s they tried dilantin as an anlagesic (didn't work) so while I was surpried by your first post about Topamax and pain relief it makes some sense. Our neurological systems have to be connected.
Those of us who also suffer mood disorders and have taken antidepresants know what hell the added weight that comes with the pills can be. Topamax can cause weight loss in some people and some unscrupulous doctors prescibe it for that reason. It doesn't always work but a kind word here and there never hurts.
"Giving up" medications that are, unhappily, necessary for life, as in bipolar disorder isn't an option. As you suggest researching them, and using them responsibly is the best we can do.
I hope I'm making some sense here and I hope you find the answers you're seeking.rainy
Posted by proserpine on March 14, 2005, at 16:28:02
In reply to Re: topomax and weight loss » challenged, posted by headachequeen on March 13, 2005, at 9:05:03
new here, & confused by both the topomax & the board, so have not been able to read the posts in order, but i will say that not only have i found something -worse- than trigeminal neuralgia, but that both my mother & dostoyevsky had seizures (he -loved- his (if you do not know & if that is of any consolation. they never figured out what my mothers were (probably just a reaction to having to be anywhere near my father); tN is also some sort of seizure. i do not love it-- probably the same reaction, although my father hath croaked, finally)) & also i hope that, although i do not even know you, you are okay. oh for heavens sake. one more for the prayer list.
Posted by stresser on March 14, 2005, at 16:57:22
In reply to Re: topomax and weight loss » TylerTor, posted by challenged on March 13, 2005, at 5:13:24
You must be troubled, and I'm sorry for that. Many of us are taking topamax for different reasons, because it is prescribed for many different reasons. I am getting myslef off the couch and into the gym......I teach fittness classes and am now a personal trainer at a gym. I run, weight train,...shall I go on? Many of the WOMEN on this board do the very same thing, as well as the men and it is a little more difficult when taking topamax. Topamax somtimes will cause some tiredness, so it's harder to get going.
I agree with you, Nettie! -L
Posted by bridgey1128 on March 14, 2005, at 17:25:14
In reply to Re: for tylor-tor, posted by stresser on March 14, 2005, at 16:57:22
WHEW! it's been a while! For whomever asked about it being for depression. Actually topomax isn't all that great FOR depression. In bipolar II I know that it controls the hypomania part but as for the depression it sort of leaves that twisting in the wind. I have found that I also cannot take a lot of antidepressants because they flat out don't work because I am bipolar. They either work too fast and stop working, don't work at all, or have the most bizarre side effects known to man. Proserpine..would you happen to be a redhead? We tend to have a big tolerance to drugs...it's a huge pain in the you know what..as well as the bizarre side effects and drug allergies...FUN FUN FUN! And my show went FANTABULOUS!
Posted by Dr. Bob on March 14, 2005, at 20:44:32
In reply to Re: please be civil, posted by challenged on March 13, 2005, at 16:41:29
> To me it seemed to be lacking good old fashioned kindness.
Two wrongs don't make a right. Please don't post anything that could lead others to feel accused or put down. Sorry, but I asked you to be civil before, so now I'm going to block you from posting for a week.
If you or others have questions about this or about posting policies in general, or are interested in alternative ways of expressing yourself, please see the FAQ:
http://www.dr-bob.org/babble/faq.html#civil
Follow-ups regarding these issues should be redirected to Psycho-Babble Administration. They, as well as replies to the above post, should of course themselves be civil.
Thanks,
Bob
Posted by headachequeen on March 14, 2005, at 23:12:49
In reply to topomax=living in outer space??, posted by proserpine on March 14, 2005, at 12:57:39
> hi there.
>
> i am new here.
>
> i am also new to topomax.
>
> i have been reading the threads here on topomax. i can identify very well w/ some of the side effects noted, specifically loss of concentration & the "motor oil" effect w/ carbonated drinks. oh heavens!! tastes like sludge & then there is this feeling of fizz at the end..... i have spent both a lot of time living on diet coke & well-- thinking-- i am glad my days of advanced degrees are over-- but my days of -thinking- are not--
>
> i dont know if anyones days of thinking ever are.
>
> i have been trying to test myself to see if my cognitive reactions are down & they definitely are. & that is driving me crazy.
>
> since i am incredibly medication resistant (or perhaps medication-blind (i was once on effexor, &, deciding it was doing nothing except giving me an ulcer i suddenly went off of it. remind me someday to tell you about effexor w/drawal. i discussed this topic w/ a friend of mine in the know on both issues & she agreed that effexor w/drawal is, in some ways, -worse- than -heroin- w/drawal)) i was put on a dose of 100-200 mg topomax per day. today i cut it down to 100 mg per day, as i just cannot tolerate the 200 mg-- i couldnt possibly drive taking this dose.
>
> as goth as i look (which would be uber), i was never a big recreational drug user & the only thing i can compare topomax to would be the time a friend of mine gave me a medical marijuana brownie (her use of medical marijuana was particularly iffy) &, again, med-resistant (or med-blind) that i am, after hours it was doing nothing, so i took another bite & i was in outer space, i walked across the street & thought i was across town-- this effect lasted for 3 days!! it was HORRIBLE!! & so topomax.
>
> does this go away??
>
> a different friend of mine, a little post the abovenoted experience offered me yet more marijuana. i demurred saying that i didnt like it as it made me confuses. & so topomax. he said that was what it was -supposed- to do.
>
> okay, so some people would -like- this feeling. but i DONT.
>
> remember, the last topomax i took was yesterday at about 5pm. if i took it today, this would be written in a far more confused manner.
>
> HELP!!Oh, heavens...
there are one or two people on this list... you know who you are ... with whom I correspond privately and with whom I am anxious to be in touch but these posts pop up on the e-mail and instead I find myself using my cheating time (I am again supposed to be in bed and asleep ) to answer them...your beginning dosage is waaaaayyyyy tooooo hhiiigghhhh....
go back and start again...
start in the evening around bed time and start with TWENTY-FIVE mg (25 mg) and stay there for at LEAST two weeks... then move up to fifty and then to 75 and then to 100 and so on by NO FASTER than two week increments...
then when the half-dosage is reached, start at 25 mg in the morning at the same increments until the full dosage is reached, half in the morning and half at bedtime...this really helps avoid the side effects...
the mental confusion when it occurs is less this way and it does pass...
heaven knows topomax is the only thing standing between me and even worse seizures than I have been having off and on for the last two and a half years...
for the past little while it is the only aed I have been able to take with any safety...to start at 100 mg is horrific even to think about...
as for going cold turkey on effexor... I have heard how terrible it can be... but not until I had done it and had no problems... quit taking it and zyprexa one day and had no reaction...
when my doctor learned I had quit he offered other meds to help me deal with the problems that might occur and I refused as I figured it was just another med to quit taking...
when I chuckled about it to my psychologist he read me the riot act, explaining how fortunate I had been but that others were not that fortunate and on and on...
and on my dollar too...
It must have been an incredible ordeal for you...so make taking topomax easier for yourself and do it slowly and comfortably
kat
Posted by headachequeen on March 14, 2005, at 23:16:19
In reply to Re: topomax pain, posted by proserpine on March 14, 2005, at 14:30:35
> i am sorry, i am having a difficult time following the threads properly.
>
> is topomax also used for -treating- nerve pain or is it known for -causing- nerve pain??
>
> i should have noted in my first post, but forgot (now as the topomax has begun to leave the building (known as my body) my ability to think is returning), i have trigeminal neuralgia, which i suppose is somewhat comparable to a lot of the nerve pain i am seeing mentioned, except it is in my face & is now being treated only by neurontin (gabapentin), which is also used to treat depression (as is the topomax, for which it is being used on me, as was the somewhere abovenoted (other post) effexor). could i get percocet, i wouldnt bother w/ any of it.
>
> as far as i can tell, & tell i can, the topomax is making the headaches WORSE. trigeminal neuralgia is considered "the worst pain known to humankind" (or somesuch, as quoted from the trigeminal neuralgia website). the neurontin holds it down, so i just get --echoes-- of "the worst pain known to humankind" from the incompetence-&-outer-space-inducing topomax.
>
> i am fond of all of my doctors. but they are blindsided by the hmo system under which they work. so it will be an endless cycle of peculiar medications i think. i just would like to know how to head off the worst of the side effects if at all possible-- right now all i can eat is pineapple & jalapeno pepper pizza & water-- & driving is, as they say, right out.
>
> is anyone else here having similar problems?? nobodys problems can be -exactly- these. i mean, that would be -too- funny.Since my eye surgeries I have had problems with neural pain above one eye and my doctor told me that it is often treated with aeds... so topomax would logically or Could logically be prescribed for that purpose...
problem here was that I was on three aeds and none were solving the problem so they prescribed an older tranquiliser that was effective in solving pain problems of that sort; not sure if it did or not but it certainly made me sleep....
used to almost grind my fist into my eye to try and stop the pain...
really helpful to healing surgeries!
kat
Posted by bridgey1128 on March 15, 2005, at 9:25:00
In reply to Re: topomax pain » proserpine, posted by headachequeen on March 14, 2005, at 23:16:19
My guess is the fact that she started at 100mg...that would cause some definite bad side effects, including the eye pain or head pain in general. I am with kat..GO BACK GO BACK GO BACK..GO BACK TO WHERE YOU WERE..and start at the 25mg..SLOW SLOW SLOW.... Dr's don't KNOW ANYTHING when it comes to Topomax and they tell you to start in the middle of a freaking dosage...drives me crazy.. Start small ..then work your way up..You'll feel SOOOO much better starting slow and SOOO many less, if ANY side effects!
Posted by headachequeen on March 15, 2005, at 18:24:32
In reply to Re: statis epilepticus, posted by proserpine on March 14, 2005, at 16:28:02
> new here, & confused by both the topomax & the board, so have not been able to read the posts in order, but i will say that not only have i found something -worse- than trigeminal neuralgia, but that both my mother & dostoyevsky had seizures (he -loved- his (if you do not know & if that is of any consolation. they never figured out what my mothers were (probably just a reaction to having to be anywhere near my father); tN is also some sort of seizure. i do not love it-- probably the same reaction, although my father hath croaked, finally)) & also i hope that, although i do not even know you, you are okay. oh for heavens sake. one more for the prayer list.
Well, I do not love my seizures; I do not even like them. I do know when I can expect frontal lobe caused seizures and when they will come from the temporal lobe... we are I guess on first name terms, but I still do not like them...
as for the statis episodes, there is no way to describe my feeling for them.
I am terrified when I read the casual approach some people take to these meds...
I know all too well what can happen when one does not deal with them properly...
a simple aspirin can increase the effect of tegretol, one of the anti-epileptic drugs...
and the effect it can have on the body is unbelievable...
fourteen hours, mostly unconscious, with no control over any of the muscles or nerves of one's body...
it is indescribable...
an antibiotic prescribed to deal with this wretched cellulitis that haunts my days and nights, and that no one bothered to really research as far as AEDs are concerned has the same effect ....
and away we go again...
today I spent my time struggling to fight my way out of saran wrap someone wrapped around my body...
frontal lobe seizure coming on tonight...
my poor besieged husband can tell just by the way I walk and speak, what to expect...
but, then we are still in recovery for lack of a better term...
on the good side, the lesions from the cellulitis are almost completely gone... just two left, one open and draining a little and one with duoderm still on it, but for protection of strengthening skin...
in a few days we should be back to normal and world, get ready, because I shall not sit quietly and wait for someone to find an answer, I am going out to do my thing with camera and dog and life...
if I sit quietly then I am letting the condition win and it has gained too many points already...
time for me to gain on it and get ahead of it...
of course, I have to be careful not to bump that hand on anything, and not to trip or stumble, and no playing with scissors or knives....
sharp things can cut and then we start all over again...
and spring is coming... those black flies, little black flies always the black flies no matter where I go...
and the mosquitoes... a simple bug bite and I have an infection and nurses and antibiotics...
at which time the only med I can take is Topomax...
now isn't that a hoot when it is the one so many people fear LOLno I do not love my seizures... but I love the times in between... and I plan to make the most of them...
putting sixty minutes into every second...
kat
Posted by proserpine on March 15, 2005, at 22:36:12
In reply to Re: topomax=living in outer space?? » proserpine, posted by headachequeen on March 14, 2005, at 23:12:49
thank you so much.
i can turn this into an almost funny story, & one about both taxes & suicide at that.
it does not, however, start out that way.
last year my exquisitely benevolent father croaked (in the dictionary definition of the word "exquisite"), after making absolutely certain i did not have -quite- enough money to live on forever. it wasnt -his- money anyway; it was my mother's, who earned it. he, otoh, earned enough to support his own self, then ran off w/ the housekeeper, no, insert the same NOT 'quite,' as he stayed around & they both lived in the house, holding hands, as my mother (the doctor) went thru her last bout of chemo, & i took care of her all the way thru the time we both lived, until the day she died, 5 weeks in the hospital (usc/norris). it was 12 years ago now, & i can still say: tired here.
tired here.
gratefully, he did croak, at long last, in december of 2003 & is now either -broiling- or gravel at the bottom of an aquarium, w/ hope one containing rather large fish-- or perhaps he is whatever lies at the bottom of the ocean, beneath everything, beneath us all. who knows. in the next life, if there is one, he has not gotten far.
i have said before & will note here: i inherited 2 things from my father & 2 only-- upper body strength & manic depression. i have used them both for a lot more good than he ever used his. until his flagrancy w/ the housekeeper the worst he ever meted out were beatings & plenty of these-- but that was the 70s & battery was not considered the way it is now. & my mother was a psychoanalyst, almost famous-- oh heavens, oh heavens.
i promised this would be funny, too. usually i get there. i can tell funny stories about my father (he painted the piano orange, he knew people deeply involved w/ the manson family), but i am just not in the mood. perhaps it is the taxes, perhaps it is the topomax, which, thank you so much for yr recommendation, i have cut down to 50 mgs.
i suppose i should now go into the reason i went into the reason for what amounts to such an endlessly long predicate (?) clause.
about 3 weeks ago, thinking i would actually not have to do my taxes (which i do not understand) this year, i decided i would instead eat 100 klonopin --i am fond of this particular vitamin k-- & not bother w/ any of it, or, really anything else.
i actually, & apparently quite sillily (which is not a word, but fits), thought eating this amount, along w/ a bunch of yoghurt drink was going to work. this is a warning to anyone else out there who has a horrible father, a horrible partner & nothing else in his or her (in my case) life that matters to them other than a tax headache; 1 glider; 3 parrots; 1 old & suddenly out of nowhere reappearing love of ones life who one doesnt know what to do about along w/ a variety of other guys, all frightening (ibid); 60 pairs of platform shoes; 4000 books; a book one is supposed to write but cant along w/ a website one is supposed to make in the same condition; awful neighbors (just the WORST); an apartment that one seems unable to clean; utter confusion; an entire dead family & many dead friends, i could go on but i wont--
100 klonopin WILL NOT KILL YOU. not even if you wash it down w/ yoghurt drink.
so i called my partner. he washed his hands of it. i mean, he wanted to surf the 'net or something. i dont know, watch tv. he has only known me 14 years. so he called some friends of mine. one took me to ihop & we had chocolate chip & banana pancakes after i fell down half the stairs whilst wearing a pink fake fur coat. i mean, i am an old Rock Chick. one must look presentable during an o.d.
old Rock Chick, old grad student. old lots of things. still terrified of doing the taxes (even though i am an Old Bookkeeper, but not for Old Investments. scary). VERY med resistant. have a list of old neurological illnesses not quite as long as anyones arm, but have made the merck manual (pseudo tumor cerebra, due to allergy to tetracycline).
at any rate, to shorten an even longer story-- my psychiatrist -gave- me an excess dose of topomax. he told me to take 50mg a day. i decided to double it. i should have looked it up. MY FAULT, MEA CULPA.
i had not understood that ANYone actually believed what i told him (or her) about being med resistant, or even that he (or she) had to look beyond the obvious w/ me (see the 4000 books & not just the 60 pairs of platform shoes).
it was ME that upped the dose too fast. i am used to doing that sort of thing-- i was chased out of a neurologists office as a junkie once only a little bit before being diagnosed w/ not only trigeminal neuralgia but near-death from an abscess by a dentist (of course), of all people, of all things.
so-- mea culpa. i can drive now. i no longer think i know everyone i see on the street (it was when i thought i saw my landlord in my therapist's parking lot that i realized (no, not that i was hallucinating or paranoid, strangely but) that topomax works by cutting down on the number of ones perceptions. say i have a billion sensory inputs coming in. instead it will give me a million, so peoples faces look more similar than they would ordinarily. i hope that makes sense. this was on an o.d. (mild) of topomax, & the end of one, but i am -certain- this is how it works & also how it changes ones sense of taste. anyhow).
i have cut back to 50mg-- & it was you all who convinced me, which gets me back to the ~ridiculously~ grateful part.
Posted by proserpine on March 15, 2005, at 22:48:17
In reply to Re: statis epilepticus » proserpine, posted by headachequeen on March 15, 2005, at 18:24:32
you have got to be the strongest person i have ever talked to, i think.
as wild as i sound, often it's -me-, but i have broken down lately, & i am not as strong as you. before my mother died it was my mother, who ran the psychiatric services for a wing in the adolescent ward at rancho los amigos hospital in the 60s (this would be for kids that were unable to leave the hospital. i have some stuff they made my mom)--
at any rate.
i am duly impressed, &, once again, -grateful-.
there is a red parrot to my right that will not be quiet, so i, myself, am at more of a loss for words than i normally am. it is exasperating, b/c i am more grateful for this post, in a way than even for the other, which has given me the ability to write both of these, by calming my med dose down to a reasonable level.
it's the fact that you still have some sort of strength coming thru loud & clear despite the weaknesses, a quality which my mother had, my grandfather had (both of these people worked like beasts & so did i, before they died, after too. they were also both constantly ill, me=ibid) & i have seem to have lost & must regain. i find some real help thru yr message & i thank you & wish you the very best. i know cellulitis is hell. i cannot remember who i know that had it. one of the above, probably. not me. i did have shingles, which led to the tn-- which has abated, largely, until i o.d.'d on the topomax (laughing)-- mea culpa, mea culpa--
Posted by headachequeen on March 16, 2005, at 11:00:29
In reply to Re: statis epilepticus, posted by proserpine on March 15, 2005, at 22:48:17
> you have got to be the strongest person i have ever talked to, i think.
>
> as wild as i sound, often it's -me-, but i have broken down lately, & i am not as strong as you. before my mother died it was my mother, who ran the psychiatric services for a wing in the adolescent ward at rancho los amigos hospital in the 60s (this would be for kids that were unable to leave the hospital. i have some stuff they made my mom)--
>
> at any rate.
>
> i am duly impressed, &, once again, -grateful-.
>
> there is a red parrot to my right that will not be quiet, so i, myself, am at more of a loss for words than i normally am. it is exasperating, b/c i am more grateful for this post, in a way than even for the other, which has given me the ability to write both of these, by calming my med dose down to a reasonable level.
>
> it's the fact that you still have some sort of strength coming thru loud & clear despite the weaknesses, a quality which my mother had, my grandfather had (both of these people worked like beasts & so did i, before they died, after too. they were also both constantly ill, me=ibid) & i have seem to have lost & must regain. i find some real help thru yr message & i thank you & wish you the very best. i know cellulitis is hell. i cannot remember who i know that had it. one of the above, probably. not me. i did have shingles, which led to the tn-- which has abated, largely, until i o.d.'d on the topomax (laughing)-- mea culpa, mea culpa--
You may not know the strengths you have...
take inventory...
personally, I think, having read your previous posts, we have much in common...
definitely in the book category...
I too have at least 4000 books and I have two books that are supposed to be finished and sitting in the publishers' offices ready to be reread by the people who do this art to be sent back for rewrites and so on...
so what do I do? I start a series, no, not a book, but a SERIES of children's books... books about how it is all right to be one's self... how one does not have to follow the herd or the pack or the gaggle but to be one's SELF...
except a series needs book one... and I have two, five, seven and I forget what other numbers done and number one refuses to write itself...
and now, following my declaration of freedom, or declaration of war, whichever, I am about to start to work on a magazine, from scratch, about something about which I know nothing.... so there go the books pushed back into the background again LOL...
and thinking about opening a photo studio of sorts called Outside the Box....
and back to the antique shop again for the summer...
and that is taking it easy...
see??? you can control the thought, but I would rest easier if you would back up to TWENTY-FIVE mg of topomax for a couple of weeks then work up to fifty and then to seventy-five and then to 100...
believe me, you will feel and react better...
sign me 600 mg a day...
kat and by the way, being eccentric is wonderful...
Posted by proserpine on March 18, 2005, at 15:12:36
In reply to Re: statis epilepticus » proserpine, posted by headachequeen on March 16, 2005, at 11:00:29
this med is driving me mad.
i have had to rid my system of it, as i have had --many-- way too many --side effects-- just about all that are noted, & heavily, most manic i can imagine being, bouncing off walls, even though it should be pretty much leaving my system. it IS-- but s l o w l y. this is a VERY strong drug.
i think it is workable, but they would have to start at something like TEN mgs w/ me, unless the enormous dosages are still in my floating around inside me. i dont know, i havent taken ANY in several days & i still feel weird. nowhere near as weird, but --weird.
in a couple more days, w/ hope, i will be thinking more appropriately & then will be able to better formulate a reply.
until then i do thank you for yr help. i was very grateful for it.
Posted by headachequeen on March 18, 2005, at 20:17:25
In reply to sorry it has taken me so long to respond., posted by proserpine on March 18, 2005, at 15:12:36
> this med is driving me mad.
>
> i have had to rid my system of it, as i have had --many-- way too many --side effects-- just about all that are noted, & heavily, most manic i can imagine being, bouncing off walls, even though it should be pretty much leaving my system. it IS-- but s l o w l y. this is a VERY strong drug.
>
> i think it is workable, but they would have to start at something like TEN mgs w/ me, unless the enormous dosages are still in my floating around inside me. i dont know, i havent taken ANY in several days & i still feel weird. nowhere near as weird, but --weird.
>
> in a couple more days, w/ hope, i will be thinking more appropriately & then will be able to better formulate a reply.
>
> until then i do thank you for yr help. i was very grateful for it.Prosperine,
you can start yourself over at a lower dosage...
simply break up the tablets into lower dosage...
it does work if you start at lower dosages...kat
Posted by hurtinhead on April 4, 2005, at 18:06:06
In reply to Re: topomax pain, posted by bridgey1128 on March 15, 2005, at 9:25:00
I have had issues with migraines for years now. I am a 34 year old woman, and back in 2000 the doctors think I had a small stroke, as they found a "lacunar infarct" on my MRI, accompanied by localized numbness in my face and extremities. Therefore, the docs are afraid to prescribe the normal migraine meds like Zomig and Imotrex due to my "stroke" history. So today, a neurologist I've just begun seeing prescribed Topamax to prevent the migraines, since I can't take the other stuff. However, after reading these threads, I am scared as hell about it. First, I am an attorney and I can't afford to get "the stupids." (Especially because I've just started a new job and the stupids can get you fired right quick, although I know popular opinion is who would notice a lawyer with a case of the stupids)
Second, I could stand to lose about 60 lbs (all gained w/in the last year-coincidently my first year of work as an attorney.) However, I'd rather lose weight on my own than get stupid.Third, my doctor has me starting Topamax at 25mg daily for the first week, and then increasing 25mg each week until I reach 100mg. Is this too fast? I'm really afraid of the cognitive side effects. Do you all think it would be OK to double the time it takes me to work up to 100mg?
Also, please, somebody tell me this drug did not make you incapable of thinking straight.
Posted by headachequeen on April 5, 2005, at 19:11:25
In reply to Re: topomax pain, posted by hurtinhead on April 4, 2005, at 18:06:06
> I have had issues with migraines for years now. I am a 34 year old woman, and back in 2000 the doctors think I had a small stroke, as they found a "lacunar infarct" on my MRI, accompanied by localized numbness in my face and extremities. Therefore, the docs are afraid to prescribe the normal migraine meds like Zomig and Imotrex due to my "stroke" history. So today, a neurologist I've just begun seeing prescribed Topamax to prevent the migraines, since I can't take the other stuff. However, after reading these threads, I am scared as hell about it. First, I am an attorney and I can't afford to get "the stupids." (Especially because I've just started a new job and the stupids can get you fired right quick, although I know popular opinion is who would notice a lawyer with a case of the stupids)
> Second, I could stand to lose about 60 lbs (all gained w/in the last year-coincidently my first year of work as an attorney.) However, I'd rather lose weight on my own than get stupid.
>
> Third, my doctor has me starting Topamax at 25mg daily for the first week, and then increasing 25mg each week until I reach 100mg. Is this too fast? I'm really afraid of the cognitive side effects. Do you all think it would be OK to double the time it takes me to work up to 100mg?
>
> Also, please, somebody tell me this drug did not make you incapable of thinking straight.
>All right, here I am ... this drug has never made me incapable of thinking straight...
at the moment I take 600 mg a day for migraine although mainly for epilepsy along with two other migraine meds ...
I too have had a small stroke, two actually... another page in the resume <sigh>
I am not an attorney but I have to think on my feet pretty well all the time and in much the way you do.
At this moment I am entering into two new undertakings: a radio news magazine with ten minutes open air leading to fifteen if it proves popular, discussion with the listeners about the days' lead topic... and an on-line magazine on a topic I know nothing about other than I like to spend money on it... I shall be editor with between six and twelve writers, a few photographers meeting my demands and as a professional photographer I can be very demanding, while I intend to do most of the cover shots myself...
mes amies, did I not say that the battle had shifted and that I was not giving in to epilepsy?
I shall be maintaining my photo studio for children and pets, another recent project, and my what was latest venture, an ongoing photo exhibition... changing the scenery so to speak, every so often with limited edition prints available for sale...
So, if Topomax does not give me the forgetfuls, you are more than safe....
That is IF... read that IF again, you do not move up the dosage too fast and weekly increments is too fast.... yes, too fast.
Start in the evenings... starting topomax in the mornings is worse than morning sickness...
At bedtime take 25 mg... for TWO (2) weeks or longer until your body says this is all right....
then move up by another 25....
if the total dosage is to be 100 mg then stay on that second increment for a couple of weeks or longer until your system says all right then start 25 mg in the morning and take it for two or three weeks before you increase to 50 mg....I doubt if 100 will affect the weight much but it could surprise you... I started losing weight in the first week... and I needed it...
the past ten days I have been unable to eat... no interest whatever and am now wearing a size 7 jean or dress pant... we have gone too far... I see the doctor on Thursday to see why my lungs hate me and why I am not interested in food...
not even steak or shrimp or chocolate...
saw surgeon today and he is too busy doing tummy tucks and face lifts and whatever to do my hand until late summer....
arrrrgggghhhhhhhhh
and those lumps get in my way...
may take them out myself...have eliminated the lump on my wrist myself....
if there is a problem, ask a woman to solve it is my new motto...
good luck with the migraines...
I started topomax in early January 2003 and have not had a headache since... and loving it
kat
Posted by hurtinhead on April 6, 2005, at 10:27:35
In reply to Re: topomax pain » hurtinhead, posted by headachequeen on April 5, 2005, at 19:11:25
Thank you so much! That made me feel a lot better. I WILL take double the time to work up to 100 mg. Better safe than sorry. And I'm not all that concerned about the weight loss. I can do it on my own. I just want to get rid of the damn headaches using a drug that is safe and that won't make me gain MORE weight.
Good luck with your radio show and on-line magazine. Radio is tough but fun. Enjoy. And thanks again for letting me know there is somebody out there who doesn't hate this drug. I'm hoping it's my miracle drug.
-Andrea
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