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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 515 to 539 of 1838. Go back in thread:
Posted by Karen_kay on January 22, 2004, at 17:43:41
In reply to Re: topomax » Karen_kay, posted by headachequeen on January 22, 2004, at 16:31:16
Right, my Pdoc said the risk is about 1:1000. But he's not always correct. And he also said that the risk is usually in the elderly or people who have kidney or lung (or liver, can't remember) disease. He told me not to worry. He said that the thign that is the most disstressing is the fact that there will now be regular blood tests, as with most mood stabilizers and anti-convulsants. I'm still worried though. How could I not be? I'm a walking Topamax commercial!
And what about:
(Here goes my rant!!!!)
Those people who think that you don't need meds for Bipolar diorder. My friend and I were talking today and she said that the ultimate goal should be to "OVERCOME" (HUH???) it and get off meds completely.... HUH???? Like I can just fix things with the power of thought! Yeah, right. Kiss My Butt! I tried to explain, but we just agreed to disagree, this time. Oh, because she understands. She's been sad before and overcome it without medication and it's the same thing, according to her. Well, what do you say? I just said, "Well, I'll look into that one." And took my evening dose of Topamax. People sometimes, I just want to choke em! Or hug them. Whatever will get through to them!
Posted by headachequeen on January 22, 2004, at 20:51:58
In reply to Re: topomax » headachequeen, posted by Karen_kay on January 22, 2004, at 17:43:41
> Right, my Pdoc said the risk is about 1:1000. But he's not always correct. And he also said that the risk is usually in the elderly or people who have kidney or lung (or liver, can't remember) disease. He told me not to worry. He said that the thign that is the most disstressing is the fact that there will now be regular blood tests, as with most mood stabilizers and anti-convulsants. I'm still worried though. How could I not be? I'm a walking Topamax commercial!
>
> And what about:
>
> (Here goes my rant!!!!)
> Those people who think that you don't need meds for Bipolar diorder. My friend and I were talking today and she said that the ultimate goal should be to "OVERCOME" (HUH???) it and get off meds completely.... HUH???? Like I can just fix things with the power of thought! Yeah, right. Kiss My Butt! I tried to explain, but we just agreed to disagree, this time. Oh, because she understands. She's been sad before and overcome it without medication and it's the same thing, according to her. Well, what do you say? I just said, "Well, I'll look into that one." And took my evening dose of Topamax. People sometimes, I just want to choke em! Or hug them. Whatever will get through to them!
Karen_kay, I can relate on so many levels...
because the seizures would not stop at the former level of tegretol, the neuro said he was not going to worry about the blood work and increased the level of Tegretol... it had to be done and I accept that... I cannot go on with the constant seizures and the disruption to my life. They are not the horrid frothing at the mouth Stephen King seizures, but they do disrupt things; they happenw hen I am asleep and do not disturb other people but they can be unsettling and at times embarrassing and at times confusing when I do not know what day it is and the post-episodic period is a time of extreme fatigue... it has to stop especially when there are two or three in a night. I accept reality when it stares me in the face. The blood tests are a part of my reality. Now I guess I must ask the doctor about this blood test too.. I accept that...
What I cannot and WILL NOT accept are the people who look at one and tell one to get a grip... when one is depressed they tell one that they have been unhappy too...
oh yes, they have been sad... sad is shedding a few tears because one doesn't win a place on the cheerleading team...
unhappy is not being first in line when the store opens the day of the big sale...
depressed is spending days in a black hole that is your life... depressed is so much more than unhappy or sad...
sad is forgotten when something else comes along and makes one forget the thing that makes one sad... depressed? that takes a lot more to forget; I know I have been there -- a lot.
Oh the ultimate goal IS to overcome and to be off the meds completely... where is this person? not on this planet obviously; but it does not just happen overnight or on a whim. It requires a lot of counselling and psychotherapy and time and motivation and help and understanding and some times with some people the meds are a permanent part of living... that is reality...
it is like being an epileptic or having asthma or diabetes or a broken leg... one cannot just decide this moment to will it away...
these people are not in the real world at all...
and you did well to react as you did...
really proud to know you
kat
Posted by redscarlet on January 22, 2004, at 23:08:03
In reply to Well thank you :) » lizi G., posted by Karen_kay on January 22, 2004, at 16:07:43
> Very much!!! I think at times I could use a kick in the pants. It helps to have support when you are starting a new medication. I quit my birth control. Havent' told my boyfriend yet, but I haven't had a need to either. He smells funny :)
>
> Have you heard about the blood tests with Topamax? My Pdoc just informed me about it.... See the following thread.> What ever will I do without Topamax? Maybe I'm just freaking myself out for no good reason. But, if I can't take it, I'l go back to being "Crazy Karen," as my friends used to call me. No Depakote for me. Thanks, but I'll pass on that one. Weight gain? Oh please, can I please pack on an extra 80 lbs, cuz I'm not fat enough already.... Sheesh!!!
>
>
> http://www.dr-bob.org/babble/20040118/msgs/302926.html
***You may want to look into Zonegran if you can no longer take the Topamax. HTH
Posted by pbjc on January 25, 2004, at 18:33:18
In reply to Re: topomax » headachequeen, posted by Karen_kay on January 22, 2004, at 17:43:41
> (Here goes my rant!!!!)
> Those people who think that you don't need meds for Bipolar diorder. My friend and I were talking today and she said that the ultimate goal should be to "OVERCOME" (HUH???) it and get off meds completely.... HUH???? Like I can just fix things with the power of thought! Yeah, right. Kiss My Butt! I tried to explain, but we just agreed to disagree, this time. Oh, because she understands. She's been sad before and overcome it without medication and it's the same thing, according to her. Well, what do you say? I just said, "Well, I'll look into that one." And took my evening dose of Topamax. People sometimes, I just want to choke em! Or hug them. Whatever will get through to them!I just had to continue on with your Rant - what is it with people? You don't know how many of my friends and even my parents tell me I should get off my medications. They see me taking 8 different medications a day for my Bipolar II disorder and they just don't think putting all that medication in my body could be good for me. WELL, HELLO, did you ever to stop to think what I'd be like if I actually did stop taking my meds? No - they don't focus on the downside that I would have to endure(going back to my cycle of deep depressions and hypomanic episodes), they just focus on "all those meds." My attitude is if that's what it takes to keep me on an even keel, then that's the proper amount of medication. I can guarantee you that if I had cancer or AIDS, they wouldn't be encouraging me to go off my medications. They just don't get it when it comes to mental illness. There, that's my follow up Rant.
Posted by bridgey1128 on January 25, 2004, at 19:28:09
In reply to Re: topomax » Karen_kay, posted by pbjc on January 25, 2004, at 18:33:18
I agree with you totally! People act like this is all "in our heads". yeah I WISH! Then we could just think it away. It's stupid! You are absolutely right when you said if we had something like AIDS or cancer they wouldn't dare say...oh can't you just OVERCOME IT WITHOUT YOUR MEDS? DAHUR!Uh NO..it may not be a death sentence but it could be for someone who gets really depressed because they aren't on medication. And what would happen if they committed suicide...they would say...Well, if they ONLY GOT HELP! It's like we're damned if we do and damned if we don't! There is such a bias against people in this country with mental illness. I am completely upfront with all my friends and people I meet about it(people I will see again and again, not total strangers). They act like..well you don't LOOK crazy! I have to explain to them that there are many different kinds of bipolar and not just the "manic depression" that people think of when you mention it. My mania isn't that bad. It consists of hyperness and being excited and talkative when I am around friends. This I don't mind. Now the people I am talking to might! haha I don't have visions of grandeur and think I am superwoman or go out and spend hundreds of dollars etc. THANK GOD! We don't have hundreds to spend!I don't feel like the Topomax has inhibited that part of my bipolar in the least. I think it has calmed me a bit so I am not quite as....blunt, if you will. It definitely has helped my depression. The ultimate test was a couple of weeks ago. A girl I grew up with and went to church with who was my age, died in a car wreck. This just totally blew my mind. I thank God I was on medication because I don't know how far down I would have gone. Losing someone you love is bad enough, but then losing someone that was your same age, in the prime of their life, that is just life altering in a whole different way. So anyway, this is adding to your rants. I completely understand. And until these people have the same problems and concerns we do, they won't truly understand what it means to go through it. It's like a single person giving child rearing advice to a parent. JUST KEEP YOUR MOUTH SHUT!
Posted by Karen_kay on January 25, 2004, at 20:17:55
In reply to Re: topomax » Karen_kay, posted by pbjc on January 25, 2004, at 18:33:18
Continue Rant here...
My friend had the nerve to say, "Well, what if in 10 years you develope cancer from the drugs (Ummm.. 1 drug, thank you) you're taking now." I said, "Well, I'll give you my honest answer. If I live 10 years like I'm living now (stable) and find out that I have cancer from the drug I'll be ok with that. I'd rather live 10 years feeling GREAT (and I feel WONDER-FrEaKiNg-FUL) than live 80 years like I did before." Then, she had the nerve to say, "Well, if I took Topamax, I'd get a buzz, right?" She thinks I take it for a buzz! OMG! I tried to reason with her that not all medication gives a person a buzz, but what can you do? I told her she was welcome to one, but she could have seizures. She still just didn't get it. She thought that I was happy now because I was doped up.....The nerve (ignorance???) of some people. It just made me realize, if I can't even educate my friends and my boyfriend, who I have lived with for 4 years, how in the world is there hope for others????? My moment of doubt. I'm sure it will pass, it always does....
Posted by Karen_kay on January 26, 2004, at 11:42:01
In reply to Re: topomax » pbjc, posted by Karen_kay on January 25, 2004, at 20:17:55
Not that topamax gives people seizures. I only told my friend that because she has a nasty pill problem and I don't keep a close eye on my meds. I just wanted to discourage her from taking other people's meds....Sorry, just reread my post and wouldn't want to give someone the impression that topamax causes seizures. Sorry about the confusion. (Or maybe others weren't confused. Maybe I'm just confusing myself. I'll just end this discussion right here and now.... Thanks for your patience, or lack of??? Whatever!)
Posted by PoohBear on January 26, 2004, at 12:19:35
In reply to Re: topomax » Karen_kay, posted by pbjc on January 25, 2004, at 18:33:18
PBJC:
WOW! Well said!
In church yesterday we had a time for prayer requests and someone mentioned a friend in another town who's daughter is bipolar. She went off her meds, and now she's gone... 10 days and no word.
I agree, WHY DON'T PEOPLE GET IT???
There seems to be a paperback 'guru' under every rock waiting for the opportune time to tell of the latest crazy wellness scheme to "get people of the drugs that are ruining their bodies". Like getting off your meds, hitchhiking out of your parents lives and perhaps ending up bare-naked-dead in a ditch somewhere ISN'T bad for your body???
Tell that to the parents who are worried sick about where their daughter is or if they'll ever see her again, ALIVE.
Best wishes and God Bless,
Tony
>
> > (Here goes my rant!!!!)
> > Those people who think that you don't need meds for Bipolar diorder. My friend and I were talking today and she said that the ultimate goal should be to "OVERCOME" (HUH???) it and get off meds completely.... HUH???? Like I can just fix things with the power of thought! Yeah, right. Kiss My Butt! I tried to explain, but we just agreed to disagree, this time. Oh, because she understands. She's been sad before and overcome it without medication and it's the same thing, according to her. Well, what do you say? I just said, "Well, I'll look into that one." And took my evening dose of Topamax. People sometimes, I just want to choke em! Or hug them. Whatever will get through to them!
>
> I just had to continue on with your Rant - what is it with people? You don't know how many of my friends and even my parents tell me I should get off my medications. They see me taking 8 different medications a day for my Bipolar II disorder and they just don't think putting all that medication in my body could be good for me. WELL, HELLO, did you ever to stop to think what I'd be like if I actually did stop taking my meds? No - they don't focus on the downside that I would have to endure(going back to my cycle of deep depressions and hypomanic episodes), they just focus on "all those meds." My attitude is if that's what it takes to keep me on an even keel, then that's the proper amount of medication. I can guarantee you that if I had cancer or AIDS, they wouldn't be encouraging me to go off my medications. They just don't get it when it comes to mental illness. There, that's my follow up Rant.
>
>
Posted by PoohBear on January 26, 2004, at 12:34:19
In reply to Re: topomax » pbjc, posted by Karen_kay on January 25, 2004, at 20:17:55
Karen_Kay:
A very close friend of mine is REALLY going through it with her middle son, who turned 18 yesterday and has been on again off again out of the house doing drugs with friends. Know that she's taken an anti depressant in the past (she's and RN) I asked her if she was taking anything to help with her obvious (to me) symptoms of depression, as she described them. She said that she DIDN'T WANT TO TAKE A PILL TO BE 'HAPPY'!!! A NURSE!!! I told her it had nothing to do with 'happiness' and everything to do with stabilizing her emotions which at the moment are all over the map... she said she'd talk to her GP about getting her Cylexa renewed.
She's barely able to function, her emotions are down the tube, there's a medication that has helped her in the past and could help her now, but she's afraid.
While I am in some agreement that we do need to exercise caution with medications, here was an obvious case where there use could do some good.
I'll now relinquish the soapbox to someone else...
Tony
Posted by headachequeen on January 26, 2004, at 15:59:11
In reply to Re: topomax » pbjc, posted by PoohBear on January 26, 2004, at 12:19:35
WHY DON'T PEOPLE GET IT???
>
> There seems to be a paperback 'guru' under every rock waiting for the opportune time to tell of the latest crazy wellness scheme to "get people of the drugs that are ruining their bodies".
Oh yes... if only we could throw these meds away and be free truly free of our demons...
and I pray that the missing girl is home soon and back on HER meds and safe...
however reality is that we need these meds for whatever reason...
cancer-causing as someone was told???
A dear and precious friend of mine was dying of cancer and his wife, the original witch if ever there were one, flushed his meds and pain-killers down the toilet because that was all that was wrong with him - he was addicted to the pain-killers and drugs and if he quit taking them he would be fine...
People are so confused....
I mentioned a while ago the woman who told me that if I stopped wasting all that money on drugs I would be just fine...
Mmmhmmm just go cold turkey and get well...
I did go cold turkey as far as zyprexa and effexor and immovane were concerned and that worked --THAT TIME...
but I am asthmatic -- severely so and I need those meds to let me breathe, something I am fond of doing...
I am an epileptic and I need Tegritol much as it gripes me to admit it, and I need Topomax if I want to avoid constant seizures... something I prefer to not have in my life...
I have severe allergies that make my asthma worse so I need the antihistamine...
oh and the high blood pressure makes me a candidate for stroke...
so we need to keep taking those pills too...
and apparently I have high cholesterol and the doctor thinks I should keep taking the stuff to keep it down...
He is not one of these pills are everything types so I think I can trust his judgement in these things...
I have no immune system and a mosquito bite or a simple cut means that I have to have antibiotics with all too alarming frequency-- often intravenously... and that is so much fun! I live for the moments...
Yes, I suppose if we all smartened up and learned to do without these medications we would be much better off.
We should just stop being so immature and throw away the meds for bi-polar disorders, depression, epilepsy, whatever...
after all, it is all in our heads anyway....by the way, has any of these know-it-all types ever produced a medical degree or psychology degree????
Until they do, they should simply back off and let us find the best way we can to find healing and support because obviously they provide neither....
and they are so totally annoying and destructive...especially when someone falls into the traps they set...
kat the totally furious
Posted by headachequeen on January 26, 2004, at 16:11:45
In reply to Re: topomax » Karen_kay, posted by PoohBear on January 26, 2004, at 12:34:19
> Karen_Kay:
She said that she DIDN'T WANT TO TAKE A PILL TO BE 'HAPPY'!!! A NURSE!!! I told her it had nothing to do with 'happiness' and everything to do with stabilizing her emotions which at the moment are all over the map...
Oh this rings a bell....
when I was really down and out with the depression I apparently did not have according to the psychiatrist from hell, I was trying to understand the whole thing and said to my doctor that I had no reason to be unhappy and he said much the same as you that depression has nothing to do with happiness or sorrow and that I had to learn to look at my feelings differently...
then when I was admitted to hospital by the original psychiatrist, a colleague was highly amused that I found it necessary to go to hospital because 'life was not making me feel happy these days'
Apparently if SHE went to the doctor, let alone to hospital every time she felt a little blue or unhappy she would be there every other day and it was time I grew up and stopped behaving like a spoiled child. Everyone else had to face reality and I did too, she told me and reality is that there are going to be times when I will be unhappy because not everything is going to go my way...
and there simply is not a pill that will make life better so live with it.
Her husband by the way, is a doctor....
I have often wondered if he is any more informed and aware than his wife.
Kat
Posted by bridgey1128 on January 26, 2004, at 23:44:02
In reply to Re: topomax » PoohBear, posted by headachequeen on January 26, 2004, at 15:59:11
OMG did you really go cold turkey on Effexor??? I thought I would die and I was weaning myself off VERY gradually! It was HORRID!!! Brain shivers, headaches, nausea. It was the most horrible thing I have ever been through. I didn't have any side effects while taking the meds except a libido the size of the US. Anyone else have that with Effexor? I mean, my hubby wasn't complaining but it wasn't doing any good either for my depression. Oh well..GLAD I am off of it. My Dr said he had never heard of someone having that many problems coming off it. Guess it's the redhead thing!!!
Posted by headachequeen on January 27, 2004, at 9:50:46
In reply to Re: topomax, posted by bridgey1128 on January 26, 2004, at 23:44:02
> OMG did you really go cold turkey on Effexor??? I thought I would die and I was weaning myself off VERY gradually! It was HORRID!!! Brain shivers, headaches, nausea. It was the most horrible thing I have ever been through. I didn't have any side effects while taking the meds except a libido the size of the US. Anyone else have that with Effexor? I mean, my hubby wasn't complaining but it wasn't doing any good either for my depression. Oh well..GLAD I am off of it. My Dr said he had never heard of someone having that many problems coming off it. Guess it's the redhead thing!!!
Apparently the effexor and the zyprexa all but flat-lined my personality; the immovane helped me sleep (I was unable to turn off my mind -- still can't -- so didn't sleep and the immovane did that to great effect, I was asleep within seconds of taking it)
I am normally (I can hear my psychologist now, saying and what is normal???) a very animated and for lack of a better word animated person. I am an Anglo and we are animated -- talk with our hands and our eyes exactly as do our francophone counterparts <s> -- but I had become a very repressed version of myself.
To top it off I had been raised to supress my emotions; we are carved from Aberdeen granite was my mother's phrase and we do not show our emotions to the world...
my psychologist was having a hard time breaking through the double insulation as it were and he mentioned one day that I too was cut from that granite and held my feelings in check. As I walked home (not allowed to drive because of the epilepsy at this stage - good thing this is not a large city <g>) it occurred to me that the anti-depressants must be further suppressing my feelings and therefore causing more problems for any hope of successful therapy, so I decided to quit and I quit.
I consulted no one, least of all the psychiatrist from hell, who is sixty miles or so from here anyway, I simply decided and I did it.
I had no idea of potential reactions or that it was something that should be done slowly. I have always been the sort who decided to do something and did it... may not always complete it (adhd) but I do it now not later and seldom ask advice (as my husband will attest... witness the three truckloads of topsoil he arrived home to find dumped on the lawn when I decided we should have a new style garden in one part of the lawn... or the three afghan hounds he came home to find lounging on the couch or the day he came home to discover I had opened an antique shop... or the day he came home to learn I had begun work to publish a magazine... accepted a job with a television network... the list is endless...)
My doctor when I finally told him, two months later was astounded, I thought he would be angry and tell me to find another doctor if I was not going to take his advice, so told him I had been off for a month, offered other meds to help with the adjustment process, and told me that if one has to go cold turkey from these meds that one is usually put in hospital and monitored so that meds can be given if need arise and was I sure I didn't want something to help...
no, I didn't want anything.. I had done it and was rather smug...
then a few weeks later when I was laughing about his reaction the psychologist lit into me and told me some of the realities about how quitting these meds affects peoples and I was to say the least subdued
It did not bother me *that* time but I do not want to try to come off them a second time which is why when the psychologist suggested a return to them and that I should see my doctor for a prescription last month I was really frightened...
next time might not be as easy and I do not want a next time...
I do not want that zero-personality again either and I am terrified of reaching the point in depression or non-depression according to the one psychiatrist of having to go back to hospital..My psychologist tells me that at this point in time I do not need him... if I do need him I have only to call and he is there...
the psychiatrist upon my release told me that I would need years of psychotherapy... that was 16 months ago...
and that I would likely need to go back to hospital a couple of times at least...
the psychologist tells me that if ever I do have to go back and he does not think I will -- says he and my doctor will work together to keep me out -- that I am allowed to refuse to be treated by that particular shrink... and why did I not think of that THEN???
in the mean time maybe it is a redhead thing that let me quit the meds so easily that time? I don't know...
I just know I do not want to take them again ever...
they are really a flattening experience...
there must be something more positive to help people in need...
maybe a patient is the person to find that positive thing...
perhaps the topomax helps????
it certainly helps with the epilepsy and the migraine and takes off the weight...
so why not the hypomanic whatever that is not depression (arrgghhhh I will never get past the resentment of that pompous little man....)
kat
Posted by headachequeen on January 27, 2004, at 9:55:20
In reply to Re: topomax, posted by bridgey1128 on January 26, 2004, at 23:44:02
> My Dr said he had never heard of someone having that many problems coming off it. Guess it's the redhead thing!!!
My doctor told me yesterday when we were talking about my needing it again or not that my quitting cold turkey made his job a lot easier as the weaning process takes a lot of his time and is hard on the patient AND the doctor because the doctor has to monitor the situation closely...
the way he spoke I gather that the withdrawal symptoms are not easy to live with at all...
He still sees me twice a month to follow up on my progress through all this, aside from regular health issues like breathing and checking to see what the eye surgeon is doing and whether or not my ankle is recovering and so on...
he is incredible...
says the depression/non-depression and the zyprexa/effexor cold turkey escapade is chapter 52 in his book on it all :)
kat
Posted by tmg on February 2, 2004, at 15:04:28
In reply to topomax, posted by Ellen Brodie on April 19, 1999, at 15:58:40
Anyone out there taking Prozac and Topomax? I have binge eating disoder and depression. I have lived my entire 36 years this way. When Prozac was introduced I started taking it and it worked extrememly well. Unfortunately I stopped responding to the medication after a couple of years. Took about 10 years with no meds and got fed up with the binge eating so sought help last Spring and was put on Wellbutrin. Felt great until I blacked out (4 times). Thus, stopped the Wellbutrin, even though not sure if that was causing the blackouts. Now taking 60 mg. Prozac which is great for the depression, but does nothing for the binge eating. Pdoc wants to add Topomax to the mix. Any info would be helpful.
Thanks!
Posted by Sooshi on February 2, 2004, at 19:39:47
In reply to Re: topomax, posted by tmg on February 2, 2004, at 15:04:28
I take Effexor XR with Topa, not Prozac, but I've heard Topa is excellent for binge eating. I know it sure has helped to curb my premenstrual "pigging out"....actually, I don't have such huge food cravings at all anymore, even premenstrually, since starting Topa. If you decide to Try Topa, go very slowly as you titrate up, as the side effects can get hairy, and good luck!
Posted by headachequeen on February 2, 2004, at 19:46:41
In reply to Re: topomax, posted by tmg on February 2, 2004, at 15:04:28
When Prozac was introduced I started taking it and it worked extrememly well. Unfortunately I stopped responding to the medication after a couple of years. Took about 10 years with no meds and got fed up with the binge eating so sought help last Spring and was put on Wellbutrin. Felt great until I blacked out (4 times). Thus, stopped the Wellbutrin, even though not sure if that was causing the blackouts. Now taking 60 mg. Prozac which is great for the depression, but does nothing for the binge eating. Pdoc wants to add Topomax to the mix. Any info would be helpful.
>
> Thanks!
The wellbutrin may have been contributing to the blackouts as it has been linked to seizures which can take the form of 'blackouts'...
epileptics and people prone to any other sort of seizures cannot take wellbutrin...
kat
Posted by bridgey1128 on February 3, 2004, at 8:33:14
In reply to Re: topomax » tmg, posted by headachequeen on February 2, 2004, at 19:46:41
Prozac made me bonkers! It made me very agitated. I could only take it for a week! Welbutrin I took for about 3 months and it made my mouth SOOOO dry..this was just LOVELY since I was doing a show at the time. NICE trying to sing under hot lights when you feel like your mouth already has 15 cotton balls stuffed in it! It KINDA worked but never really did much..it eventually started making me nuts too. I guess that is where my bipolar comes in. I shouldn't have been taking it to begin with. It did the same thing to my brother who was taking it to help him stop smoking. I never did black out with the Welbutrin but it never did much for me anyway. I didn't like the Effexor at all. When I was on it, it was ok, but it never did anything but boost my libido through the freaking roof. When I tried to COME OFF IT, now THAT was another story. It was the most horrid thing I have ever had to do! Brain shivers, headaches, diziness. I felt like I wanted to die. This went ON AND ON AND ON. I finally just STOPPED taking it because I realized weaning was just going to keep it going and if I was going to have side effects I might as well have them with nothing as well as something. They stopped abruptly when I took an Ativan. I dunno what it did to stop them but it helped EMMENSELY. I would lie there at night before then and listen to this ch ch ch going on in my ears every 5 secs. It's like having your own percussion section in your head at all hours. I actually STILL have that problem now although I am not sure if it's now associated with the Topomax or not. Anyway, not much to add but thought I would put my two cents in anyway.
Posted by headachequeen on February 3, 2004, at 22:46:55
In reply to Re: topomax, posted by bridgey1128 on February 3, 2004, at 8:33:14
in my ears every 5 secs. It's like having your own percussion section in your head at all hours. I actually STILL have that problem now although I am not sure if it's now associated with the Topomax or not. Anyway, not much to add but thought I would put my two cents in anyway.
I know that my doctor told me that anyone coming off Effexor has to do it slowly and while under close supervision; same with Zyprexa...
and I am not sure if it is Tegretol or Topomas but one of them sets up a ringing and clanging in my ears that makes me think that I have the entire cymbals and triangle and tambourine section of some marching band in my ears at times... other times it seems as if there is a low keyed whistle in there...
most off-putting to say the least...
since I started taking the topomax again the tingling so-called has lessened... none at all in my face.. that was AWFUL... and it is much less painful in my hands and feet...
there has to be a way to deal with this...
I need the stuff but does it have to hurt????
kat
Posted by T34 on February 4, 2004, at 3:58:16
In reply to Re: topomax » bridgey1128, posted by headachequeen on February 3, 2004, at 22:46:55
I was on Topomax for 6 weeks after having had migraines everyday for 6 months. After 3 weeks I had not had the first sign of a migraine. It was Heaven. The side effects from the Topomax were horrid. My point, though, I had decided it didn't matter if I had to put up with my teeth falling out as long as I didn't have those awful headaches everyday, but I started having that ringing (high pitched squeal) in my ears. My neuro. had me stop the Topomax immediately. He said that it could/ would cause permanent hearing damage quickly. I stopped the Topomax and two days later the squealing was gone. Now I am on Zoneqran, and having headaches everyday again. Oh well, he keeps telling me we'll find that good mix, it's trial and error, but I'm tired of the trials!
Posted by bridgey1128 on February 4, 2004, at 8:30:11
In reply to Re: topomax, posted by T34 on February 4, 2004, at 3:58:16
my tingling isn't painful for me, just ....well there. It feels like when you are getting ready to pass out and you have been hyperventilating. Other than that I haven't had any side effects other than the memory loss. I think! I can't remember! Just kidding. But seriously, I think that is starting to be on. I am only on 50mg. Should that be a side effect already? I mean I have had problems remembering things for quite some time anyway but now I can really only concentrate on one thing at a time. I get distracted pretty easily. I have told my family BE PATIENT and don't interrupt me when I am in the middle of something because I will TOTALLY lose track of what I am doing. I want to continue to take this if only for the weight loss benefit, but I can't if it means I am going to become senile. Any thoughts??
Posted by tmg on February 4, 2004, at 17:07:33
In reply to Re: topomax, posted by T34 on February 4, 2004, at 3:58:16
Sorry If you already answered this question, but what horried experiences did you have while on Topomax? Don't spare any details, I want to hear it all!
Thanks!
Posted by Ladee52 on February 4, 2004, at 18:08:27
In reply to Re: topomax, posted by tmg on February 4, 2004, at 17:07:33
> Sorry If you already answered this question, but what horried experiences did you have while on Topomax? Don't spare any details, I want to hear it all!
>
> Thanks!Thought I would add my thoughts. I've been on Topomax since the middle of December for migraine headaches. My neurologist started me out very slowly at 25 mg's and increased the dosage by 25 mg's every two weeks and I now take 100 mg's daily. I'd had a migraine for close to two months and it is now just a mild, tolerable headache that is getting weaker every day and which we think will soon go away. It is SOOO much better than what it was. Anyway, I have had little or no side effects. The first few weeks my face broke out really bad and I'm 51 years old, but it's clearing up now. I did have a bit of tingling in my feet, like when you're feet have gone to sleep on you, but it wasn't painful at all and that has gone away. Unfortunately, I haven't noticed that my appetite has been suppressed and that I was looking forward to. LOL! (I gained some weight I didn't need to gain while I was incapacited with my headache in November and December). I also take Effexor with the Topomax and don't have any ill effects from it. Just work with your doctor and find what works for you. Everything works differently with different people, but do take it slowly with the Topomax and good luck.
Ladee
Posted by T34 on February 5, 2004, at 16:03:36
In reply to Re: topomax, posted by bridgey1128 on February 4, 2004, at 8:30:11
I went through some of the short term memory loss and it was extremely frustrating. It wasn't but a week later when I had to stop taking it, so I don't know if it would have gotten better over time. I have heard that it does.
Posted by bridgey1128 on February 5, 2004, at 16:13:07
In reply to Re: topomax, posted by Ladee52 on February 4, 2004, at 18:08:27
PS: The Effexor didn't work for me because I am bipolar. I didn't have any side effects while ON it other than MASSIVELY increased libido and after taking it for 2 months I started to have a headache that wouldn't go away. It just never did anything FOR me. It was the COMING OFF of it that was so horrid. THAT I wouldn't wish on anyone! So if you ever have to come off it, do it VERY VERY slowly.
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