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Dr. Bob is Robert Hsiung, MD,
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Posted by headachequeen on March 30, 2004, at 11:56:24
In reply to Re: topomax and voice changes » Maggie-VA, posted by headachequeen on March 30, 2004, at 11:44:58
> life is changed indeed... and so am I...
> no head-aches
> few and milder seizures
> less weight
forgot to add that I feel more confident now
and since the Topomax am no longer afraid to do things, to go away for instance - used to be afraid that one of the seizures might occur while we were visiting or spending a weekend in a hotel...
and am also no longer afraid to be alone in my own home -- that was a serious problem that began to sort itself over the months in conversations with people on this list as I applied their advice and ideas to how I approached life...
and as the Topomax changed my sense of self...it is not the miracle drug for all things...
hasn't cleared up my freckles or eliminated my asthma, and I am still scheduled for surgery tomorrow...
but hey! It does make a huge (no pun intended) difference in my life
kat
and sorry about the mistake in sending the empty message before
Posted by JPS on April 5, 2004, at 4:46:36
In reply to topomax, posted by Ellen Brodie on April 19, 1999, at 15:58:40
I was sent to a neurologist with severe back pain and had an MRI and was diagnosed with a ruptured disc, pinched nerve and 2 more buldging disc about to rupture. I also suffer from chronic pelvic pain.
I was prescribed Topamax 2 weeks ago, 25 mg. the 1st week, went to 100 mg. the 2nd week and I can't tell I am even taking it. I have lost 8 lbs. and but I have gained alot of weight the last few years from not being able to excercise from the chronic pelvic pain so that was good I lost some weight. I also take 150mg. of Zoloft.
My question is, I see most on this site taking Topomax for depression,weightloss, etc., but don't see many taking it for pain other than migraine pain, just wondering how effective others have found it to be on pain? Maybe I need a stronger dose. He is giving it to me for pain and won't give me anything else for pain.
I found this warning on Topomax on another site and worry about taking too strong of a dose. I wonder if this is rare of is common. Here was the warning I found below:
TOPOMAX WARNING
A warning for those Topomax users who are having trouble with eye pain and blurriness;
Your eye pain and blurred vision is a reaction from the Topomax. Your eye pressure is high and if it stays high for a short period of time you will damage your optic nerve and become blind! I am not joking. Last week my husband started using Topomax. 1 week later he almost lost his eyesight as a reaction to it. The Topomax raised his eye pressure to the high fifties (normal is around 10) and no one knew how to treat it. Fortunately he was sent to the Mass Eye and Ear Infirmary in Boston who is currently researching this side effect. His still cannot see and they are hoping he will regain his ability to see within 2 weeks.
If you start using Topomax and feel irritation in your eyes no matter how minor stop using and go to your doctors immediately!!! Not many doctors are aware of this newly discovered problem so refer them to the Mass Eye and Ear Infirmary's research.
Posted by headachequeen on April 5, 2004, at 11:14:34
In reply to Re: topomax, posted by JPS on April 5, 2004, at 4:46:36
> I was sent to a neurologist with severe back pain and had an MRI and was diagnosed with a ruptured disc, pinched nerve and 2 more buldging disc about to rupture. I also suffer from chronic pelvic pain.
>
> I was prescribed Topamax 2 weeks ago, 25 mg. the 1st week, went to 100 mg. the 2nd week and I can't tell I am even taking it. I have lost 8 lbs. and but I have gained alot of weight the last few years from not being able to excercise from the chronic pelvic pain so that was good I lost some weight. I also take 150mg. of Zoloft.
>
> My question is, I see most on this site taking Topomax for depression,weightloss, etc., but don't see many taking it for pain other than migraine pain, just wondering how effective others have found it to be on pain? Maybe I need a stronger dose. He is giving it to me for pain and won't give me anything else for pain.
>
> I found this warning on Topomax on another site and worry about taking too strong of a dose. I wonder if this is rare of is common. Here was the warning I found below:
>
> TOPOMAX WARNING
> A warning for those Topomax users who are having trouble with eye pain and blurriness;
> Your eye pain and blurred vision is a reaction from the Topomax. Your eye pressure is high and if it stays high for a short period of time you will damage your optic nerve and become blind! I am not joking. Last week my husband started using Topomax. 1 week later he almost lost his eyesight as a reaction to it. The Topomax raised his eye pressure to the high fifties (normal is around 10) and no one knew how to treat it. Fortunately he was sent to the Mass Eye and Ear Infirmary in Boston who is currently researching this side effect. His still cannot see and they are hoping he will regain his ability to see within 2 weeks.
> If you start using Topomax and feel irritation in your eyes no matter how minor stop using and go to your doctors immediately!!! Not many doctors are aware of this newly discovered problem so refer them to the Mass Eye and Ear Infirmary's research.
>I think this would have been mentioned before this if the reaction were as damaging ????
so is this a one time or a one-person side effect?
certain drugs and certain everythings affect some people differently than others...
the oh heavens I forget what he is called but he i the doctor treating my vocal cords prescribed a spray that made me so ill the first time I used it -- I never tried it a second time and would certainly tell the world not to use it ever...
I was convinced that I was going to die before the side effects of the stuff wore off...
others including people I know use it with no problems...
different people have different reactions...I use topomax and I have eye problems including pressure involving my eyes BUT I repeat BUT
the pressure on the eye existed long before topomax entered my life...
and the pressure is being dealt with through surgery...
are they sure the pressure is not glaucoma-related? is it not related to other problems? is it definitely caused by the topomax or is another problem exacerbated by the topomax?In my case the problem is being dealt with through surgery... three down and three to go and the topomax does not make it worse...
wonder if the topomax is easing the pain as I have not needed the pain meds they prescribed nearly as much as I was led to believe...
interesting area for thought there...I did do the redhead thing and get infection in the eye that had the lesser surgery... the eye that required almost two hours of work is almost healed (only five days since the surgery) and the left eye which had about forty-five minutes if that is a mess ... and hurts like blazes)...
typical redhead... arrgghhhbut I would want a lot more info than that which was posted there...
and I wonder if the weight loss would help ease the back pain you suffer too... as well as pain meds...
if you gained weight because of chronic pain then the weight loss that usually comes with topomx might add to the easing of the pain... just a thought...
it was something my orthopaedist suggested when I started to lose weight...
there was this argument I had with a boat when I was a teen-ager... boat was bigger and I lost causing damage to my some discs and my lower spine and my years on a rifle range caused some damage to the sterno-clavicular joint that he has also been treating...
he had been suggesting weight loss as a help for a long time...
and felt I was finally listening I think :(
kat
Posted by bridgey1128 on April 5, 2004, at 12:45:44
In reply to Re: topomax, posted by JPS on April 5, 2004, at 4:46:36
WHOAH! They started you on 25 and then bumped you up immediately to 100mg the next week????? OMG my Dr did that from 25mg to 50mg after a week and I lost my eyesight. Luckily Kat did tell me that it would go away if I went back down and sure enough it did but MAN did my eyes HURT!! I looked like I had been in a boxing match or had been stung by a bee. My eyes were bloodshot and swollen and I could feel that my eyes were elongated and my iris' were sticking out. It was HORRID! I couldn't see and it was so painful. I had to close my eyes for 2 days. I called my Dr and the pharmacist but neither knew what was going on..gee thanks!! So YES it is a side effect but if you go back down on the dosage it will go away. You just need to go up SLOWLY on the drug. I actually noticed more weight loss and appetite reduction on the 25mg than on the 50mg and up. I am currently on the 100mg and I have noticed that I have not lost any weight due to the Topomax nor has my appetite decreased because of it. I have noticed that I have become less emotional at stuff(besides my own life. That seems to be as emotional as ever) I am not as touched by things as I used to be which is strange. I have been more easily depressed. I can't tell that it is working as well as it was before...I dunno. I am losing weight but I am back on Atkins. It's the only diet that has worked for me. I've lost 10lbs in the past 2 weeks. Anyway, thought I would put my 2 cents in about the eyesight thing..hasn't happened since thank God!!
Posted by headachequeen on April 5, 2004, at 21:01:44
In reply to Re: topomax, posted by bridgey1128 on April 5, 2004, at 12:45:44
> WHOAH! They started you on 25 and then bumped you up immediately to 100mg the next week????? OMG my Dr did that from 25mg to 50mg after a week and I lost my eyesight. You just need to go up SLOWLY on the drug. I actually noticed more weight loss and appetite reduction on the 25mg than on the 50mg and up. I am currently on the 100mg and I have noticed that I have not lost any weight due to the Topomax nor has my appetite decreased because of it. I have noticed that I have become less emotional at stuff(besides my own life. That seems to be as emotional as ever) I am not as touched by things as I used to be which is strange. I have been more easily depressed. I can't tell that it is working as well as it was before...I dunno. I am losing weight but I am back on Atkins. It's the only diet that has worked for me. I've lost 10lbs in the past 2 weeks. Anyway, thought I would put my 2 cents in about the eyesight thing..hasn't happened since thank God!!
>>>WHOAH! They started you on 25 and then bumped you up immediately to 100mg the next week????? OMG my Dr did that from 25mg to 50mg after a week and I lost my eyesight. <<<
Yoooicckksss!!! I missed that... good thing that Bridgey is on the ball here... and a bump from 25 to 100 at that let alone in so short a time...
scarey stuff... small increments over longer periods of time is the only way to go... the only SAFE way to go... and that is the only way to avoid the harmful side effects in general...we have all found that out...
When I was first put on Topomax the neurologist gave me a sheet of directions that included a chart outlining the time frame in which I should increase the dosage... 25 mg increases no faster than 2-week intervals and in the evenings only to begin with; I misread it and started in the mornings... and I was sooo sick... then I read the directions and switched to evenings and I was fine...
the instructions included the information that I was to proceed at my own inclination, or my own speed or some such statement... but NO FASTER than the 2-week increments...
if I felt better at 3-week intervals that was fine; 4-week increments? fine too... but no faster... and he told me that this was vital for the sake of my own success on the medication and to avoid problems with it...
He is the head of the head-ache institute or whatever it is called as well as my particular neurologist and has been very involved in the study of the use of the med so is very careful in prescribing it and very definite in how he wants it used...
he is very definite about everything... short man and a real Napoleon syndrome lol although I think based upon what I have come to know of his abilities his arrogance may be based upon his abilities; rather like the surgeon who is dealing with my eyes. He too is arrogant, but the arrogance is because he knows his field -- he is also tremendously compassionate and the mix is solid and sound...
when there is a concern or a fear these two arrogant men are there and listening and aware of the need...
wish I could say the same for some of the others I have met along this journey...
sometimes I think I would rather be treated by my vet!
if we do not take these things slowly then the side effects get out of control and take the upper hand and we give up -- or the side effects cause serious problems...
I am starting into month sixteen on Topomax and am comfortable with the results and with the medication... the weight loss I like although I have to admit that there is a problem with the clothing side of things but this too shall be remedied at some point...
had my hair washed at the salon today.. new stylist complained constantly about the thickness of my hair and having to deal with it, wanted to thin it out -- I take that as meaning there is no hair loss about which I have to worry...
so I am not to worried...
but she also trimmed it...
now I wanted radical , but I do not interpret radical as SHORT.... it will take me a year to get this long enough to need a trim... or to know if any has fallen out...
so no need to worry I guess :(
now to see what the neurologist prescribes on Wednesday to substitute for Tegretol...
someone asked once if I would consider an increase in Topomax...
the answer is yes... as long as any increase is in low increments over a slow time period
but I will NOT give it up... out of the question...
kat
Posted by jdgjdg on April 5, 2004, at 21:43:36
In reply to Re: migraine control and weight loss » bridgey1128, posted by headachequeen on January 14, 2004, at 15:58:30
My pdoc just switched me from Depakote ER 1500mg to Topamax for Bp I. I have had signifigant weight gain in just 2 months on Depakote so I asked her to switch me. I am just starting the Topamax tonight. She said to decrease the Depakote to 1000mg and start 50mg of Topamax for 5 days, then 5 days with 500 Depakote and 100 Topamax and then stop the Depakote all together and increase the Topamax to 150mg. After that and 5 days at 150mg she is going to do blood work to test my blood levels and liver enzymes just as she did with the Depakote to see if this is a good maintenance dose. I'm really hoping this helps me to loose the weight I gained on the Depakote plus an extra 20lbs I have been carrying around for a few years. Has anyone else had similar experiences they would like to share? Jenn
Posted by headachequeen on April 5, 2004, at 21:55:08
In reply to Re: migraine control and weight loss, posted by jdgjdg on April 5, 2004, at 21:43:36
> My pdoc just switched me from Depakote ER 1500mg to Topamax for Bp I. I have had signifigant weight gain in just 2 months on Depakote so I asked her to switch me. I am just starting the Topamax tonight. She said to decrease the Depakote to 1000mg and start 50mg of Topamax for 5 days, then 5 days with 500 Depakote and 100 Topamax and then stop the Depakote all together and increase the Topamax to 150mg. After that and 5 days at 150mg she is going to do blood work to test my blood levels and liver enzymes just as she did with the Depakote to see if this is a good maintenance dose. I'm really hoping this helps me to loose the weight I gained on the Depakote plus an extra 20lbs I have been carrying around for a few years. Has anyone else had similar experiences they would like to share? Jenn
Read Bridgey's previous post...
too much too fast is too dangerous...
kat
Posted by Maggie-VA on April 6, 2004, at 7:11:27
In reply to Re: topomax and voice changes » jdgjdg, posted by headachequeen on April 5, 2004, at 21:55:08
I couldn't agree more. It took me 8 weeks to get from 25 mgs to 100. Please take it easy with this stuff.
Maggie-VA
Posted by headachequeen on April 6, 2004, at 7:43:01
In reply to Re: topomax and voice changes, posted by Maggie-VA on April 6, 2004, at 7:11:27
> I couldn't agree more. It took me 8 weeks to get from 25 mgs to 100. Please take it easy with this stuff.
>
> Maggie-VAIt took me eight weeks too...
and I am really happy that it did...
kat
Posted by JPS on April 6, 2004, at 8:38:45
In reply to Re: topomax, posted by JPS on April 5, 2004, at 4:46:36
Explained to my Dr. I wasn't getting any pain releif from the Topomax for my ruptured disc and pinched nerve, (I also have chronic pelvic pain)which I take Zoloft 150 mg. He refused to give me anything else for the pain.
If you remember he started me at 25.mg one week, went to 100mg. the next week (last week). I've been reading all of the warnings on here about going up to fast on dosage, I ask him for Lortab, I mean if a ruptured disk and pinched nerve isn't something that requires pain meds I don't know what is, oh no, he won't hear of it, he says, up the dose of Topomax to 150mg.
I see it this way, he's not here at my house, I had already told him of my concern of that much of a increase in dosage that fast, so I just nodded and I don't plan on taking the 150mg. like he ordered. I'll just continue the 100mg. What do you guys think?
I'm 45 min. away from another neurologist, with my back pain I can't drive that far right now. Why is it so hard to get pain meds for real pain? I understand Dr.'s concern for addiction, but we're talking about medically necessary here.
Signed,
Discouraged :(
Posted by headachequeen on April 6, 2004, at 16:00:23
In reply to Re: topomax, posted by JPS on April 6, 2004, at 8:38:45
> Explained to my Dr. I wasn't getting any pain releif from the Topomax for my ruptured disc and pinched nerve, (I also have chronic pelvic pain)which I take Zoloft 150 mg. He refused to give me anything else for the pain.
>
> If you remember he started me at 25.mg one week, went to 100mg. the next week (last week). I've been reading all of the warnings on here about going up to fast on dosage, I ask him for Lortab, I mean if a ruptured disk and pinched nerve isn't something that requires pain meds I don't know what is, oh no, he won't hear of it, he says, up the dose of Topomax to 150mg.
>
> I see it this way, he's not here at my house, I had already told him of my concern of that much of a increase in dosage that fast, so I just nodded and I don't plan on taking the 150mg. like he ordered. I'll just continue the 100mg. What do you guys think?
>
> I'm 45 min. away from another neurologist, with my back pain I can't drive that far right now. Why is it so hard to get pain meds for real pain? I understand Dr.'s concern for addiction, but we're talking about medically necessary here.
>
> Signed,
> Discouraged :(I don't wonder that you are discouraged...
has anyone else ever used topomax for pain?
I saw my surgeon this afternoon for a follow-up visit regarding the eye surgery... and the next date was set sigh... he has no ideas about its use as a pain med either...
as far as he is concerned if two regular strength Tylenol taken every four hours don't deal with the pain when he sends a patient home then the patient should come right back to see him...
now that is a new slant on the whole idea...
he was also annoyed because I hadn't called when I was concerned about the swelling over the left eye...
kept telling me that is why he has a phone and a pager...
what a novel approach...
wish he would bite some of the other doctors I know...
then maybe we would have some solid answers about this...so topomax and pain, what do we know about it?????
kat
Posted by bridgey1128 on April 6, 2004, at 16:17:14
In reply to Re: topomax, posted by JPS on April 6, 2004, at 8:38:45
I have no idea why Drs treat pain as something that is all in your head. It's hard to explain to a Dr just HOW much pain you are in. Some day someone will invent a device that will transfer your pain to the Dr so he knows EXACTLY how much pain are experiencing at any given moment. I bet after that occurs NO ONE will have to wait for pain medication. If that Dr wouldn't give you pain medication I would go to another one and get a second opinion if that is possible. There is no need for you to be in so much pain. Addiction is a factor in everything in this world but as long as you understand the risks and haven't had a problem with it in the past I don't understand why they aren't taking care of the problem. Tylenol does nothing for me and I have to take at least 4 Advil to do anything when it comes to cramps and the like. I take Bextra and that dulls my back pain but I have to take twice the amount my Dr prescribed. I think he prescribed 10mg and I take 20mg. That still doesn't kill the pain entirely but it definitely lessens the pain. He tells me that I have Bersitis in my hips, knees and back because nothing has ever shown up on the MRI or X-rays. I think I need to go to a chiropractor when I have the $. I DEFINITELY would not go up on the dosage of the Topomax so quickly, you would NOT like the side effects. I have gone up very very slowly and have had a headache. When the tingling(the kind like when you are getting ready to pass out) subsides and the headache subsides I know I can move up. otherwise I am afraid what else would happen should I move up too soon. I think it would be a VERY GOOD idea for you to stay at the dosage you are at for at least 2 weeks before moving up to the next dosage. Why do Dr's seem so careless with this medication? Who knows..anyway..I guess this makes my 4 cents worth now ;P
Posted by bruce_w6 on April 22, 2004, at 0:19:46
In reply to topomax, posted by Ellen Brodie on April 19, 1999, at 15:58:40
Has anyone noticed any sexual side effects from topomax? I am on 250 mg of Lamictal & 6x120 mg Lithium Orotate daily & 12.5 mg of seroquil for sleep.
I am having mind racing and WEIGHT GAIN.
Posted by chemist on April 22, 2004, at 1:59:42
In reply to Topomax Sex, posted by bruce_w6 on April 22, 2004, at 0:19:46
> Has anyone noticed any sexual side effects from topomax? I am on 250 mg of Lamictal & 6x120 mg Lithium Orotate daily & 12.5 mg of seroquil for sleep.
>
> I am having mind racing and WEIGHT GAIN.hey bruse, chemist here....i took topamax for quite some time, and let me tell you, it is ineffective for anything but weight loss as adjunct therapy with a primaary mood stabilizer. no sexual side effects (for me), although cognitive impairment was a mess and very real and very well documented. your lithium is causing weight gain, and seroquel - in your dose range - is acting as a hypnotic. if you go to 200 mg qd seroquel, the antipsychotic effects take over. i suspect you are oversedated. your doc is correct in prescribing topamax as secondary with lithium, purely for the weight loss and putative BPI/II effects - but finally, your lack of sex drive is most likely attributable to the seroquel/lithium combo. go for a cbc and specifically ask for thyroid function (TSH). in addition, make sure your lithium is in the therapeutic dose range....all the best, chemist
Posted by bridgey1128 on April 22, 2004, at 9:30:17
In reply to Re: topomax, posted by bridgey1128 on April 6, 2004, at 16:17:14
I have noticed less of a sex drive with the Topomax. This is kind of a problem since I normally have such a high libido. I have noticed coginive difficulties with the Topomax and this is frustrating. Sometimes I can't think of the most simple words! I feel downright stupid and lose track of what I was saying right in the middle of a...........
Posted by bridgey1128 on April 22, 2004, at 9:33:03
In reply to Re: topomax, posted by bridgey1128 on April 22, 2004, at 9:30:17
Thankfully I haven't lost my sense of humour :P My mind yes...my humour..no. What a trade!
Posted by bruce_w6 on April 22, 2004, at 19:17:06
In reply to topomax, posted by Ellen Brodie on April 19, 1999, at 15:58:40
anyone with the racing mind thing that comes with bi-polar 2? I think it's a form of mania.
Posted by bridgey1128 on April 22, 2004, at 19:46:19
In reply to Has topomax helped, posted by bruce_w6 on April 22, 2004, at 19:17:06
I have bipolar 2 and before I was on topomax I would lie there forever at night trying to go to sleep and my mind would just race from one thing to another. Usually they would be like worse case scenarios. It would keep me awake at night for a couple hours sometimes. I would have to stop myself from thinking about horrible things happening to our kids or family and friends. I would think up stupid arguments and just have these arguments in my head with people! I still have a hard time calming down at night but at least I can calm down faster. It's easier for me to put my mind to rest and not think about 15 million things at once. My "mania" is excessive talking and being hyper around my friends or lots of people. I am a real people person but I know that I could get on people's nerves from being so talkative. I am still talkative but I don't feel like it's edgy and impulsive. Before I felt like I HAD to talk. Now I can just be myself and enjoy being in the conversation. I don't feel like I have to be talking the whole time.
Posted by lorilu on April 23, 2004, at 12:14:30
In reply to Re: Has topomax helped, posted by bridgey1128 on April 22, 2004, at 19:46:19
> I have bipolar 2 and before I was on topomax I would lie there forever at night trying to go to sleep and my mind would just race from one thing to another. Usually they would be like worse case scenarios. It would keep me awake at night for a couple hours sometimes. I would have to stop myself from thinking about horrible things happening to our kids or family and friends. I would think up stupid arguments and just have these arguments in my head with people! I still have a hard time calming down at night but at least I can calm down faster. It's easier for me to put my mind to rest and not think about 15 million things at once. My "mania" is excessive talking and being hyper around my friends or lots of people. I am a real people person but I know that I could get on people's nerves from being so talkative. I am still talkative but I don't feel like it's edgy and impulsive. Before I felt like I HAD to talk. Now I can just be myself and enjoy being in the conversation. I don't feel like I have to be talking the whole time.
I also was exactly like you before Topamax! Plus I would be trying to think what they were thinking and interrupting and it was a big mess. I knew I was annoying and wanted to make and keep friends at the teacher's lounge so instead of being part of the conversation I ended up just repeateing in my head "Dont talk" over and over again. I was going crazy before Topamax but I didn't know this could be a Bipolar thing. I loved my Topamax but could never really explain why to my pdoc, probably because I can never remember anything on 400mg of Topamax. I better print this. (smile)
Posted by bridgey1128 on April 23, 2004, at 17:27:14
In reply to Re: Has topomax helped, posted by lorilu on April 23, 2004, at 12:14:30
That's why I figure I had better stop at 100mg. I still have a few symptoms and it's not totally under control but I can manage. What I CAN'T manage is not being able to concentrate and forget things half a second after I think of them. My husband gets frustrated because I will be telling him something and then something will get my attention and then BOOM...it's gone and he's like...What! What were you saying? And I say...Oh..um...I have no idea. So I would rather be talkative and enjoy my mania a tad than be totally forgetful. I just can't with 2 kids. That is a really bad side effect with this medication. The concentration thing. I keep telling my husband..I'm sorry...it's the medication..I think he thinks I am just making excuses.
Posted by headachequeen on April 30, 2004, at 18:55:32
In reply to Re: Has topomax helped, posted by bridgey1128 on April 22, 2004, at 19:46:19
> I have bipolar 2 and before I was on topomax I would lie there forever at night trying to go to sleep and my mind would just race from one thing to another. Usually they would be like worse case scenarios. It would keep me awake at night for a couple hours sometimes.
I do not have the bipolar problem but I do sympathise...
one of my problems is not being able to turn off my mind and as a result not being able to get to sleep at night. Therefore, I do my best sleeping in the morning sometime between 0600 and noon... when the rest of the world seems to think that people should be up and at it...
employers have the up and at it idea too <sigh>
My best ideas come to me at night when the rest of the world, husbands included, is asleep...
or wants to be asleep...
and for this the topomax DOES NOT HELP at all...
I take much higher doses of it than you do, Bridgie and I still find my brain spinning the way it always has...
the only way I can get it to stop is to take the effexor and the zyprexa and head into zombie-land and that is not in the equation for me. I will not agree to it at all..
therefore, having made my decision, I have to live with it
So, I know, I know, I ought not to complain when I feel sleep-deprived and wonder how to get through the day...and speaking of sleep-deprived, I met with mr. neurologist who doesn't seem to listen to anyone or anything.
He had a letter from my physician who explained that he did not think that my taking other meds to help me cope with the side effects (nausea, abdominal pain, and severe 'tingling' in hands and feet among others) was really a great idea, especially when the tegretol was obviously not working, was there another anti-seizure med that could be prescribed? He also pointed out that the seizures had lessened, as had the side-effects since I had been on topomax and that we were ecstatic about the reduction in migraines (and in weight) but that the extra medication to cope with tegretol did not seem wise.. and we would like to see an end to break-through seizures...
so the neurologist asked questions which I answered... and he prescribed a new med...
which turns out to be a medication to prevent the side effects to tegretol....
one that causes the same side effects in most people!!!
Here I am trying to eliminate the nausea and abdominal pain and it causes it...
I want to eliminate the extra medication and he leaves me on Tegretol and prescribes another med to help me stay on the stupid stuff with never a word as to why
Instead he arranged for me to go for another eeg, this time sleep-deprived and without benefit of caffeine either... oh joy...
I am fit to be tied at this point...
and now down to a size eight... seems this new med also has a weight loss side effect...
when next I write I shall be vanished from the face of the earth...
kat
Posted by bruce_w6 on April 30, 2004, at 19:18:47
In reply to headachequeen » bridgey1128, posted by headachequeen on April 30, 2004, at 18:55:32
I had the EXACT same problem with the mind racing and sleep. "THE CURE IS" 12.5 mg of Seroquel (1/2 of a 25 mg tablet). This will stop the mind racing and you will sleep 6-9 good hours. It is not enough to effect anything else. When you wake up you may still have it but tou will sleep peacefully.
> > I have bipolar 2 and before I was on topomax I would lie there forever at night trying to go to sleep and my mind would just race from one thing to another. Usually they would be like worse case scenarios. It would keep me awake at night for a couple hours sometimes.
>
>
> I do not have the bipolar problem but I do sympathise...
> one of my problems is not being able to turn off my mind and as a result not being able to get to sleep at night. Therefore, I do my best sleeping in the morning sometime between 0600 and noon... when the rest of the world seems to think that people should be up and at it...
> employers have the up and at it idea too <sigh>
> My best ideas come to me at night when the rest of the world, husbands included, is asleep...
> or wants to be asleep...
> and for this the topomax DOES NOT HELP at all...
> I take much higher doses of it than you do, Bridgie and I still find my brain spinning the way it always has...
> the only way I can get it to stop is to take the effexor and the zyprexa and head into zombie-land and that is not in the equation for me. I will not agree to it at all..
> therefore, having made my decision, I have to live with it
> So, I know, I know, I ought not to complain when I feel sleep-deprived and wonder how to get through the day...
>
> and speaking of sleep-deprived, I met with mr. neurologist who doesn't seem to listen to anyone or anything.
> He had a letter from my physician who explained that he did not think that my taking other meds to help me cope with the side effects (nausea, abdominal pain, and severe 'tingling' in hands and feet among others) was really a great idea, especially when the tegretol was obviously not working, was there another anti-seizure med that could be prescribed? He also pointed out that the seizures had lessened, as had the side-effects since I had been on topomax and that we were ecstatic about the reduction in migraines (and in weight) but that the extra medication to cope with tegretol did not seem wise.. and we would like to see an end to break-through seizures...
> so the neurologist asked questions which I answered... and he prescribed a new med...
> which turns out to be a medication to prevent the side effects to tegretol....
> one that causes the same side effects in most people!!!
> Here I am trying to eliminate the nausea and abdominal pain and it causes it...
> I want to eliminate the extra medication and he leaves me on Tegretol and prescribes another med to help me stay on the stupid stuff with never a word as to why
> Instead he arranged for me to go for another eeg, this time sleep-deprived and without benefit of caffeine either... oh joy...
> I am fit to be tied at this point...
> and now down to a size eight... seems this new med also has a weight loss side effect...
> when next I write I shall be vanished from the face of the earth...
> kat
Posted by headachequeen on April 30, 2004, at 21:55:22
In reply to Re: headachequeen, posted by bruce_w6 on April 30, 2004, at 19:18:47
> I had the EXACT same problem with the mind racing and sleep. "THE CURE IS" 12.5 mg of Seroquel (1/2 of a 25 mg tablet).
well, here is a thought that I shall share with my doctor. I see him on Friday and shall see if we can arrange this...
he does not like my sleeping in the mornings and being awake in the nights as this contributes to the depression part of my life or is a part of it or something...
and he is determined that I shall be up and awake and doing things in the daytime...
he has this exercise idea... and I do not DO strenuous things... running is against my religion as is jogging and bouncing activities and since they operated on my eyes anything that is bounce-oriented or strain-oriented is off the agenda anyway (halleluia!) so exercise is not in it now LOL
but I do a lot of walking and am going to get back into biking when the weather improves a little...
but that doesn't help me sleep... it does not turn off my mind at night... I read until all hours to stop the whirling dervish thing I call a brain... and have a notepad and pen on the bedside table to write down the better ideas I have to admit...
so I don't help myself I suppose...
more surgery is scheduled for the middle of the month and another visit to the psychologist for 13 May... I think his life is too dull since he cut me loose so he decided to invite some chaos back into it <s>
but I shall suggest this to my regular doctor and see if we can shut down the brain and sleep for a few hours when other people are sleeping.. what a concept
kat
Posted by heathermom on May 10, 2004, at 13:35:24
In reply to Re: Has topomax helped, posted by bridgey1128 on April 22, 2004, at 19:46:19
Hi. I stumbled upon this board in my quest for topamax info. My doc just prescribed for bi polar 2. I also take 900mg lithium, and lamictal. I am still just taking 25 mg. I guess my main question is...what does it feel like to not obsess over food? Does it really happen? When? At what dose? I know I am over thinking it. So much so, that I over analyze my need to eat. You know, I think, is it working yet? Is it not? Can anyone fill me in??? Thankyou kind people:)
Posted by chemist on May 10, 2004, at 13:49:41
In reply to Re: Has topomax helped » bridgey1128, posted by heathermom on May 10, 2004, at 13:35:24
> Hi. I stumbled upon this board in my quest for topamax info. My doc just prescribed for bi polar 2. I also take 900mg lithium, and lamictal. I am still just taking 25 mg. I guess my main question is...what does it feel like to not obsess over food? Does it really happen? When? At what dose? I know I am over thinking it. So much so, that I over analyze my need to eat. You know, I think, is it working yet? Is it not? Can anyone fill me in??? Thankyou kind people:)
hi there, chemist here....i took topamax 100 mg bid (200 mg/day in divided doses) as monotherapy for (alleged) bipolar I/II and can report that it was ineffective in controlling my hypomania vs. trileptal (300 mg/day) as monotherapy, and that weight-loss was quite pronounced but not extreme.....all the best, chemist
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