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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1738 to 1762 of 1838. Go back in thread:
Posted by SandyWeb on March 19, 2006, at 16:53:43
In reply to Re: TOPAMAX and Hypothermia » SandyWeb, posted by SLS on March 19, 2006, at 9:40:27
SLS asked:
If anything, Topamax is supposed to raise body temperature.What other drugs are you taking?
-----------------
Hi Scott,
Yes, I've heard that Topamax causes problems with the inability to sweat (particularly in peds), and thus their body temperature raises. But I still can't find anything lengthy on hypothermia in adults. Today hasn't seemed as cold as most days, so.......fingers crossed. I'm really hoping that it's a side effect that takes a little longer than most to correct itself. Because it sure is difficult to deal with in the winter! Brrrzzzyyyy.
The other meds I'm on are:
Topamax: 100mg morning and 100mg evening
Inderal LA: 80mg morning and 80 evening
Remeron: 45mg evening
Seroquel: 100mg evening
clonazepam: 2mg morning and 2mg afternoon
Have a great day!!Sandy
Posted by Aleese on March 20, 2006, at 11:43:59
In reply to Re: TOPAMAX and Hypothermia » Aleese, posted by SandyWeb on March 19, 2006, at 16:42:21
> Oh my gosh, I noticed the weight loss within days!!! I am absolutely thrilled!! I'm now on 200mg, and I've gone from a size 14 to a size 10 pants. Can you say, "Happy, happy, happy?" I've always been a slim girl, around 105 pounds. After my gigantic babies (8' 6" and 9' 3"....I know...ouch!), I went back down to 105 pounds. But then I decided I didn't like the boney look, so decided to go up to 115-120 pounds. What a great size!!!!! I wouldn't ever want to go lower than that. My bones don't hurt people! Lol!!!!
>
> I don't expect to get back down to 115 pounds, but I don't have a bathroom scale. All I know is that the pounds are definately coming off daily....and I'm constantly pulling my pants up!! But, alas, my breasts are getting smaller.
>
> I would be happy to end up at 130 pounds. I'm actually starting a Stepper program tomorrow. I've been so inactive for the past couple of years. Thought I might have a heart attack with all this added weight!!! Lol! I gained over 50 pounds on Remeron. The Topamax just basically makes me forget to eat. So I drink water (don't want those dreaded kidney stones), cup of soups, Diet Pepsi, hard sugarless candy to suck on, oh and I'll indulge in a TV dinner from time to time. At some point I know my body is going to begin to feel hungry, so I'll have to figure out some sort of nutritional meal menu. For now, starvation is great! Lol.
>
> Still freezing too.
>
> Sandy
>I am onl at 50 mg a day maybe thats why I dont see or feel a difference? I am hoping an up dosage will help that part.
Posted by Aleese on March 20, 2006, at 11:47:21
In reply to Re: TOPAMAX and Hypothermia » Caedmon, posted by rainy on March 19, 2006, at 16:50:29
> Aleese, some people don't lose weight on Topamax. Many who do begin to notice weight loss at about 200 or 225 mgs. But that's just a ball park figure, too. If you're really wanting to lose weight, be sure to be watching calories and exercise and all that boring stuff.
>
> rainy
>
> Well I am only on 50 mgs a day but I am hoping once I go up that my appetite will change. I did notice 1 change and that is I can no longer drink soda (my passion) and I am drinking more water (along with lemonade) i am just tired of this weight thing since it was never an issue until my first son!!!
Posted by rainy on March 20, 2006, at 13:04:57
In reply to Re: TOPAMAX and Hypothermia, posted by Aleese on March 20, 2006, at 11:47:21
Yeah, soft drinks lost their fizz for me too. I didn't start to lose weight until I was at 225 mgs and then it was as much to do with the fact that I wasn't eating because I was depressed as with the topamax.
I guess everybody's metabolism is different--50 mgs might not help you lose but then if you gave up the lemonade, who knows? Topamax isn't a diet pill, though and some people have been disappointed that it didn't cause them to shed pounds at even higher doses. I figure I lost about ten pounds on it but then I'm careful about what I eat and I exercise daily. (usually.) I lost more pounds because of depression than durn old expensive Topamax.
Speaking of which, there's a bitter wind blowing and I guess I'll go walk around the durn old expensive mall on this first day of spring while the foolish daffodils in our back yard hide their heads from the icy air.
rainy
Posted by Aleese on March 20, 2006, at 13:10:41
In reply to Re: TOPAMAX and Hypothermia, posted by rainy on March 20, 2006, at 13:04:57
> Yeah, soft drinks lost their fizz for me too. I didn't start to lose weight until I was at 225 mgs and then it was as much to do with the fact that I wasn't eating because I was depressed as with the topamax.
>
> I guess everybody's metabolism is different--50 mgs might not help you lose but then if you gave up the lemonade, who knows? Topamax isn't a diet pill, though and some people have been disappointed that it didn't cause them to shed pounds at even higher doses. I figure I lost about ten pounds on it but then I'm careful about what I eat and I exercise daily. (usually.) I lost more pounds because of depression than durn old expensive Topamax.
>
> Speaking of which, there's a bitter wind blowing and I guess I'll go walk around the durn old expensive mall on this first day of spring while the foolish daffodils in our back yard hide their heads from the icy air.
>
> rainy
>
>
> Did you notice any weight loss from not drinking soda?
>
Posted by Aleese on March 20, 2006, at 13:14:19
In reply to Re: TOPAMAX and Hypothermia, posted by rainy on March 20, 2006, at 13:04:57
I already DO know that diet & excersize help with weight loss (thats OBVIOUS!!) but I also know that for alot of people Topomax does too!!
I drink lots of water now and SOMETIMES lemonade.
Posted by bridgey1128 on March 20, 2006, at 14:36:16
In reply to Re: TOPAMAX and Hypothermia, posted by Aleese on March 20, 2006, at 13:10:41
I noticed immediate appetite loss the second time around as well at 25mg and it has continued. I am back up to 125mg and I think I will stay here for awhile. I am still cold. My taste hasn't changed but I have found I can no longer drink anything but water because my body retains water like mad if I drink anything BUt water. I drank tea yesterday and a diet soda the day before and wasn't drinking as MUCH water with it and my fingers began to swell. I have had to take a diuretic to keep up with the water swelling. My BP hasn't gone up though. I went back on it initially because I gained back the 30lbs I lost after going off it. I also needed to be more even keeled, although I haven't noticed much of a behavior change this go round. Just the appetite and being cold most of the time. My feet and hands are really cold and usually they are so hot they are red. First day of spring and we get sleet! Gee that only makes sense because when it was winter we were having 84 degree days! :P Gotta love NC!
Posted by Aleese on March 20, 2006, at 15:12:39
In reply to Re: TOPAMAX and Hypothermia, posted by bridgey1128 on March 20, 2006, at 14:36:16
> I noticed immediate appetite loss the second time around as well at 25mg and it has continued. I am back up to 125mg and I think I will stay here for awhile. I am still cold. My taste hasn't changed but I have found I can no longer drink anything but water because my body retains water like mad if I drink anything BUt water. I drank tea yesterday and a diet soda the day before and wasn't drinking as MUCH water with it and my fingers began to swell. I have had to take a diuretic to keep up with the water swelling. My BP hasn't gone up though. I went back on it initially because I gained back the 30lbs I lost after going off it. I also needed to be more even keeled, although I haven't noticed much of a behavior change this go round. Just the appetite and being cold most of the time. My feet and hands are really cold and usually they are so hot they are red. First day of spring and we get sleet! Gee that only makes sense because when it was winter we were having 84 degree days! :P Gotta love NC!
You noticed appetite loss at 25 mg a day? How long did it take before you noticed it?
Posted by bridgey1128 on March 20, 2006, at 15:53:45
In reply to Re: TOPAMAX and Hypothermia, posted by Aleese on March 20, 2006, at 15:12:39
A couple days, but that is me. The first go round at 50mg I didn't notice any appetite decrease and yet I still lost 30lbs. I am not hungry now at 125mg but I haven't lost but maybe 10lbs.
Posted by Aleese on March 20, 2006, at 17:24:24
In reply to Re: TOPAMAX and Hypothermia, posted by bridgey1128 on March 20, 2006, at 15:53:45
Really you didnt notice an appetite decrease at 50 mgs either? Did your appetite seem to stay the same at 50 mgs but you lost anyway? If so why do you think you lost?
Posted by Storm Rider on March 22, 2006, at 9:37:23
In reply to Re: TOPAMAX and Hypothermia, posted by bridgey1128 on March 20, 2006, at 15:53:45
> A couple days, but that is me. The first go round at 50mg I didn't notice any appetite decrease and yet I still lost 30lbs. I am not hungry now at 125mg but I haven't lost but maybe 10lbs.
The weight is going to come crashing off in a tidal wave... but you will have an appetite suppressant effect and the weight will continue to fall away...
better that it comes off slowly and stays off...
for one thing a drastic weight loss is anything but healthy and usually doesn't last...
it comes back and with interest...ten pounds is a beginning and now you look forward to the next ten pounds and the next and so on...
at the moment I am trying to find something in the closet that I can wear to work this evening...
I have not a blazer or jacket that fits... twelve leather and suede jackets and all are too big and look it... last week I think it was I took out a favourite blouse and had to use safety pins to make the collar fit properly...
For this evening's programme I have to dress approriately... and none of my skirts fit around the waist, skirts that once were mid-calf length now trail around my ankles as waists sling themselves somewhere around my hips and I hope they will stay there... but the jacket thing....
I look as if I am wearing my husband's sports coats..
have to whip out today between taping news stand-ups for the six o'clock and find a jacket that will work and then find something to wear as a blouse or sweater underneath it...
I now need a size three skirt or jeans...
Posted by Storm Rider on March 22, 2006, at 9:39:42
In reply to Re: TOPAMAX and Hypothermia, posted by Aleese on March 20, 2006, at 17:24:24
> Really you didnt notice an appetite decrease at 50 mgs either? Did your appetite seem to stay the same at 50 mgs but you lost anyway? If so why do you think you lost?
I found weight loss starting at 25 mg... and the disinterest in junk food starting within the first three days...
kat
Posted by SandyWeb on March 22, 2006, at 11:55:59
In reply to Re: TOPAMAX and Hypothermia » Aleese, posted by Storm Rider on March 22, 2006, at 9:39:42
Hi all,
To get back on the topic of HYPOTHERMIA.....
I began Topamax on February 7th at a low dose of 50mg. I am now at a dose of 200mg. For the majority of that time, I can honestly say that I've been absolutely FREEZING! Not fun! I really don't know why so many of us seem to have experienced this, but I have wonderful news for any of you sitting at your computers wrapped in quilts and wool socks and winter hats pulled down over your ears!!! Lol!
I would have to say that about 75% of that horrid coldness has gone away in the past couple weeks. I mainly feel it in my hands now, and if so inclined, I can touch my nose and go, "Brrrr!". Lol. But I can dress normally now (although with a cardigan sweater on), and I feel pretty much normal for how someone should feel in the winter months. This side effect just took an extra long time to balance out.
So jump up and down. Get happy. You won't be freezing forever! I'd have to say that was the absolute worse part of Topamax. I hope each increase doesn't cause such a major drop in temperature. Wow!! That was really something!
As for the appetite suppressant, it still is working wonders for me. I definately need belts to hold the ole pants up now. Something horrible has happened with my bras, though!!! Lol. It's actually rather a game to go into my closet now and see what clothes now fit that I couldn't even pull up over my hips a few months ago!
Someone mentioned that they've lost the desire for junk food. I've found that too. I don't mind a LITTLE bit of chocolate from time to time, but I can't imagine eating a whole chocolate bar or even a bag of chips. I still like soda pop,BUT it has to be Diet Pepsi (zero calories, so that doesn't hurt). Love my coffee, but I use the zero calorie Sugar Twin. I just plain don't eat that much. But if I get an urge, I have bananas, apples, and grapes. And LOTS of water.
Anyways, you WILL warm up again!!!!!!!!! By summer, you'll be wishing you were cold again!!!! Lol!
Sandy
Posted by Storm Rider on March 22, 2006, at 14:16:51
In reply to Re: TOPAMAX and Hypothermia, posted by SandyWeb on March 22, 2006, at 11:55:59
> Hi all,
>
> To get back on the topic of HYPOTHERMIA.....
>
> I began Topamax on February 7th at a low dose of 50mg. I am now at a dose of 200mg. For the majority of that time, I can honestly say that I've been absolutely FREEZING! Not fun! I really don't know why so many of us seem to have experienced this, but I have wonderful news for any of you sitting at your computers wrapped in quilts and wool socks and winter hats pulled down over your ears!!! Lol!
>
> I would have to say that about 75% of that horrid coldness has gone away in the past couple weeks. I mainly feel it in my hands now, and if so inclined, I can touch my nose and go, "Brrrr!". Lol. But I can dress normally now (although with a cardigan sweater on), and I feel pretty much normal for how someone should feel in the winter months. This side effect just took an extra long time to balance out.
>
> So jump up and down. Get happy. You won't be freezing forever! I'd have to say that was the absolute worse part of Topamax. I hope each increase doesn't cause such a major drop in temperature. Wow!! That was really something!
>
> As for the appetite suppressant, it still is working wonders for me. I definately need belts to hold the ole pants up now. Something horrible has happened with my bras, though!!! Lol. It's actually rather a game to go into my closet now and see what clothes now fit that I couldn't even pull up over my hips a few months ago!
>
> Someone mentioned that they've lost the desire for junk food. I've found that too. I don't mind a LITTLE bit of chocolate from time to time, but I can't imagine eating a whole chocolate bar or even a bag of chips. I still like soda pop,BUT it has to be Diet Pepsi (zero calories, so that doesn't hurt). Love my coffee, but I use the zero calorie Sugar Twin. I just plain don't eat that much. But if I get an urge, I have bananas, apples, and grapes. And LOTS of water.
>
> Anyways, you WILL warm up again!!!!!!!!! By summer, you'll be wishing you were cold again!!!! Lol!
>
> Sandy
>Losing weight that came about for all the wrong reasons is really an awesome experience, isn't it, Sandy <G>
Congratulations!!!A footnote to this hypothermia thread.
Of late I have been experiencing an unexplained weight loss. Tests have shown no reason for the sudden drop... it cannot be linked even to the topomax; there is no apparent link to any physical cause.
Suddenly I am unable to eat a meal, have no interest in food. A few bites of food and I feel as full as after a huge feast. I feel nauseated because I have not eaten, nauseated if I do eat. Again, no explanation.
Losing three or four pounds in a week is not uncommon.
With this new weight loss, I, who never feel the cold... oh I whine when the temperature is in the low seventies, longing for the return of winter...
am constantly shivering and looking for heavier socks and another sweater...
and as I mentioned earlier, finding clothes that fit me has become a serious challenge. Anorexia is becoming a part of the daily discussion... no I am not anorexic. I would like to eat, food just has no appeal and I am full very quickly when I do eat...
the wrong foods and I am ill immediately...
bizarre... the doctors tell me it is not the topomax... but they cannot say what it is...
so now I am drinking those wretched meal supplements yecchhh... and lots of water... for lunch I had some chicken, plain because any seasoning is apt to upset the applecart...however, back to hypothermia. I was told today by one of the health pros that losing weight changes the body's approach to life... it no longer knows how to deal with cold in the way it always has, so it has to develop new strategies and until it adjusts to the new size and the new metabolism and all the rest of it... should have taped what she said, sorry... then we feel the cold more intensely...
apparently once I either adjust or gain some weight as in start eating, I shall feel the cold more intensely...
so when your body adjusts to the thinner you, you will then be more comfortable with the atmosphere around you....sounds so logical when she explains it...
kat
Posted by SandyWeb on March 22, 2006, at 14:41:13
In reply to Re: TOPAMAX and Hypothermia » SandyWeb, posted by Storm Rider on March 22, 2006, at 14:16:51
Hi Kat,
Oh, don't believe 100% of what the doctors tell you. You know your own body best, right? We know the Topamax is the main culprit here.....but I'm willing to put up with the discomforts for the weight loss, the mood stabilization, and the just plain feeling more like the old Sandra than I have in years.
There's one thing I forgot to mention, and I don't know if any of you are going through this too. PROBABLY! Lol. Are you having a build-up of stomache acid? I have never in my 40 years of life had acid indigestion!!! It definately makes me not want to eat or drink, and this sour/acid stuff keeps coming up my throat. It can happen for a short period of time during the day, or it can seem to last most of the day. Makes me feel UGH!!!!
So I've got myself a big ole box of Ranitidine 75 mg (generic brand of a stomache acid reducer). Lasts for 9 hours. Why pay the outrageous brand costs when this is the same ingredient???? This box comes with 60 pills, and it only takes one pill to work (occassionally I need 2, but very rarely). No more acidic tummy after about 10-15 minutes. Without it, there would be days that I wouldn't even be able to drink water!!!!!!
So, I know the extra acid in my stomache is from the Topamax because I've never had it before AND this is when the symptom began. I'm going to be a walking pharmacy before too long! Lol!
Does anyone know why Topamax would cause excess stomache acid?
And, hey......here's something else!! LOL!!!! My sister was just pointing out the other day how nice my hair was looking lately!!!!! She said it just looked so soft and pretty! Hee hee!!!! So I'm now a walking pharmacy with pretty hair!!!!!
Sandy
Posted by bridgey1128 on March 22, 2006, at 14:48:03
In reply to Re: TOPAMAX and Hypothermia » Storm Rider, posted by SandyWeb on March 22, 2006, at 14:41:13
Before I had lost a single pound back on the Topamax I have been cold. I don't think it has a thing to do with weight loss. 10lbs isn't anything for me. It wouldn't change my bod temperature. When I lost 90lbs after having my son THEN I felt a temperature change but it was actually LESS of a temp change than I have suddenly felt now. It's all the Topamax I just don't know WHAT makes it do that. Is it perception? Is it blood flow? Not sure but wish some Dr would have an answer. No one seems to have one about this drug.
Posted by Aleese on March 22, 2006, at 17:13:06
In reply to Re: TOPAMAX and Hypothermia » Storm Rider, posted by SandyWeb on March 22, 2006, at 14:41:13
> Hi Kat,
>
> Oh, don't believe 100% of what the doctors tell you. You know your own body best, right? We know the Topamax is the main culprit here.....but I'm willing to put up with the discomforts for the weight loss, the mood stabilization, and the just plain feeling more like the old Sandra than I have in years.
> I can't believe it I thought I just started getting heartburn or something until I read this but I guess its the Topomax right? I have never had heartburn until now (accept with pregnancy)
I don't seem to be having the lowered appetite but I am wanting lots of water and NO soda now which is a huge switch!! I just hope a notice a weightloss!! I can't believe the acid indigestion is a factor I thought it was my getting older(34)!!!!!!!!!!
> There's one thing I forgot to mention, and I don't know if any of you are going through this too. PROBABLY! Lol. Are you having a build-up of stomache acid? I have never in my 40 years of life had acid indigestion!!! It definately makes me not want to eat or drink, and this sour/acid stuff keeps coming up my throat. It can happen for a short period of time during the day, or it can seem to last most of the day. Makes me feel UGH!!!!
>
> So I've got myself a big ole box of Ranitidine 75 mg (generic brand of a stomache acid reducer). Lasts for 9 hours. Why pay the outrageous brand costs when this is the same ingredient???? This box comes with 60 pills, and it only takes one pill to work (occassionally I need 2, but very rarely). No more acidic tummy after about 10-15 minutes. Without it, there would be days that I wouldn't even be able to drink water!!!!!!
>
> So, I know the extra acid in my stomache is from the Topamax because I've never had it before AND this is when the symptom began. I'm going to be a walking pharmacy before too long! Lol!
>
> Does anyone know why Topamax would cause excess stomache acid?
>
> And, hey......here's something else!! LOL!!!! My sister was just pointing out the other day how nice my hair was looking lately!!!!! She said it just looked so soft and pretty! Hee hee!!!! So I'm now a walking pharmacy with pretty hair!!!!!
>
> Sandy
>
Posted by Aleese on March 22, 2006, at 17:20:20
In reply to Re: TOPAMAX and Hypothermia, posted by Aleese on March 22, 2006, at 17:13:06
> > Hi Kat,
> >
> > Oh, don't believe 100% of what the doctors tell you. You know your own body best, right? We know the Topamax is the main culprit here.....but I'm willing to put up with the discomforts for the weight loss, the mood stabilization, and the just plain feeling more like the old Sandra than I have in years.
> > I can't believe it I thought I just started getting heartburn or something until I read this but I guess its the Topomax right? I have never had heartburn until now (accept with pregnancy)
> I don't seem to be having the lowered appetite but I am wanting lots of water and NO soda now which is a huge switch!! I just hope a notice a weightloss!! I can't believe the acid indigestion is a factor I thought it was my getting older(34)!!!!!!!!!!
> > There's one thing I forgot to mention, and I don't know if any of you are going through this too. PROBABLY! Lol. Are you having a build-up of stomache acid? I have never in my 40 years of life had acid indigestion!!! It definately makes me not want to eat or drink, and this sour/acid stuff keeps coming up my throat. It can happen for a short period of time during the day, or it can seem to last most of the day. Makes me feel UGH!!!!
> >
> > So I've got myself a big ole box of Ranitidine 75 mg (generic brand of a stomache acid reducer). Lasts for 9 hours. Why pay the outrageous brand costs when this is the same ingredient???? This box comes with 60 pills, and it only takes one pill to work (occassionally I need 2, but very rarely). No more acidic tummy after about 10-15 minutes. Without it, there would be days that I wouldn't even be able to drink water!!!!!!
> >
> > So, I know the extra acid in my stomache is from the Topamax because I've never had it before AND this is when the symptom began. I'm going to be a walking pharmacy before too long! Lol!
> >
> > Does anyone know why Topamax would cause excess stomache acid?
> >
> > And, hey......here's something else!! LOL!!!! My sister was just pointing out the other day how nice my hair was looking lately!!!!! She said it just looked so soft and pretty! Hee hee!!!! So I'm now a walking pharmacy with pretty hair!!!!!
> >
> > Sandy
> >
> I dont see my post on here so I think I messed up somewhere, I cant believe this about the acid indigestion and here I thought I was getting older(34). I have never had heartburn (just when I was "with" child) but I have been getting it latley pretty much since the Topomax!!! After I read this I realized!!! I dont notice an appetite decrease unfortunatly but I do notice an increase in water intake and and a disinterest in soda which is a huge change for me! I just hope weightloss comes with!!
>
Posted by bridgey1128 on March 22, 2006, at 20:45:55
In reply to Acid Heartburn, posted by Aleese on March 22, 2006, at 17:20:20
Maybe because you aren't eating as much? The stomach acid is more noticable? You might actually BE hungry but because you aren't getting that hungry info from your brain because the Topamax is blocking it your stomach is trying to tell you by churning. Just a thought.
Posted by Storm Rider on March 23, 2006, at 8:26:25
In reply to Re: TOPAMAX and Hypothermia » Storm Rider, posted by SandyWeb on March 22, 2006, at 14:41:13
> Hi Kat,
>
> Oh, don't believe 100% of what the doctors tell you. You know your own body best, right? We know the Topamax is the main culprit here.....but I'm willing to put up with the discomforts for the weight loss, the mood stabilization, and the just plain feeling more like the old Sandra than I have in years.
>I have been on Topomax for a long time now... almost four years or maybe it is heading into five.. I have lost track... and this feeling of being cold all the time began only in the last three or four weeks... this from a person who seldom wears a winter jacket, I wear a heavy nordic sweater instead because these northern ontario winters are nothing compared to the ones where I come from...
however in recent months I have lost such a wild amount of weight that I am now thin in the extreme... one of viewers called the studio last night to ask if I were anorexic for Pete;s sake and to suggest that I do a show on eating disorders and get help for it...
I have been seeing all sorts of specialists for all sorts of tests to try and find that cause of this strange weight loss... way beyond anything that topomax could take credit for... this morning clothes that fit me respectably Friday do not fit reasonably at all.. waistbands hang on my hips...
I was overweight at one time with time the weight came off to a degree that was really great and I began to look like me again... now I am thinner than the anorexic version of my teens...
hence the explanation of my constant cold feelings...
add to the mix the diabetic circulatory problems and there is a constant sense of cold in my hands and feet anyway...if it were the topomax, I would have noticed it a couple of years ago...
so I cannot blame it..
just have to turn up the thermostat on my personal furnace...
if only I knew where to look...One think I have noticed is that I no longer notice the pins and needles in my hands... they are cold all the time so the pins and needles have either frozen, gone away or are now a lesser evil...
kat
Posted by Storm Rider on March 23, 2006, at 8:36:49
In reply to Re: TOPAMAX and Hypothermia » Storm Rider, posted by SandyWeb on March 22, 2006, at 14:41:13
Life is never dull...
Yesterday morning I saw one of the eye specialists... I have two, the surgeon who did the work on my tear ducts and eye lids so that I could have proper vision and the one who diagnosed the early cataracts and the retinal problems.
A couple of weeks ago I spent the afternoon at the eye institute having tests on my retinas because of the increasing colour vision problems and the sepia times, those times when I see everything in sepia or shades of bronze - most disconcerting. What was to have been a short couple of tests turned into a marathon when tegretol was mentioned.
Results are back now, and the eye guy gave me the information. From something the technician said when she was printing the results before I left one of the test areas, I thought things were pretty good... turns out I was right. My black and white vision is perfect.
However, the rods and cones are not as they ought to be and while I have always had a colour vision problem, it is much worse than it began and some of that is because of the build-up of tegretol - a build-up that does not and will not go away. It and its damage is there and there to stay.
The other damage is not quite as easily attributed.
I am to see a retinologist to find out what he can decide about it all and to see if there is anything he can do to stem the tide or to correct it.
Apparently Dr. DelPero has had many patients with damage from Tegretol and does not like the stuff at all...
very glad I quit taking it...
so why not suggest it sooner??? why not suggest it period???
I do not understand why we are not warned of such risks.
He told me that there is always the risk of glaucoma with topomax but that he can monitor for that and if it starts to present then we can deal with it and look for a different medication...
and that it is not a common side effect...
so he is aware and watching...
also told me that he had not been aware that I was epileptic and on tegretol until I quit taking it when he asked about medications because of my retinas...
I had been referred by an optometrist... not my doctor and he had not thought to ask about medications...
so from now on I give any new doctors a list of medications...
new lesson learned...and the same question comes up, why when there are other safer meds out there, are they still prescribing tegritol with all its devastating side effects...
kat
Posted by Aleese on March 27, 2006, at 17:01:29
In reply to Re: TOPAMAX and Hypothermia » SandyWeb, posted by Storm Rider on March 23, 2006, at 8:26:25
> > Hi Kat,
> >
> > Oh, don't believe 100% of what the doctors tell you. You know your own body best, right? We know the Topamax is the main culprit here.....but I'm willing to put up with the discomforts for the weight loss, the mood stabilization, and the just plain feeling more like the old Sandra than I have in years.
> >what tv show are you on?
>
> I have been on Topomax for a long time now... almost four years or maybe it is heading into five.. I have lost track... and this feeling of being cold all the time began only in the last three or four weeks... this from a person who seldom wears a winter jacket, I wear a heavy nordic sweater instead because these northern ontario winters are nothing compared to the ones where I come from...
>
> however in recent months I have lost such a wild amount of weight that I am now thin in the extreme... one of viewers called the studio last night to ask if I were anorexic for Pete;s sake and to suggest that I do a show on eating disorders and get help for it...
> I have been seeing all sorts of specialists for all sorts of tests to try and find that cause of this strange weight loss... way beyond anything that topomax could take credit for... this morning clothes that fit me respectably Friday do not fit reasonably at all.. waistbands hang on my hips...
> I was overweight at one time with time the weight came off to a degree that was really great and I began to look like me again... now I am thinner than the anorexic version of my teens...
> hence the explanation of my constant cold feelings...
> add to the mix the diabetic circulatory problems and there is a constant sense of cold in my hands and feet anyway...
>
> if it were the topomax, I would have noticed it a couple of years ago...
> so I cannot blame it..
> just have to turn up the thermostat on my personal furnace...
> if only I knew where to look...
>
> One think I have noticed is that I no longer notice the pins and needles in my hands... they are cold all the time so the pins and needles have either frozen, gone away or are now a lesser evil...
>
> kat
What TV sho are you on?
Posted by SandyWeb on March 27, 2006, at 20:32:22
In reply to Re: TOPAMAX and Hypothermia, posted by Aleese on March 27, 2006, at 17:01:29
February 7th started at 25mg. March 27th I am on 250mg. These doses are split.
Was FREEZING cold for the first week or two....slippers, blanket, hat pulled over my ears, heat turned WAY up. Just unbelievably COLD.
Temperature stablized at some point. I don't really know when because I was in such agony from being COLD. Maybe after 3 weeks. It was such a blessing. Now when I up my dose, I get a little bit cold, and only for a day or two. Nothing to complain about at all.
At the very beginning, I would get tingling in my hands and feet. I didn't like it. Sometimes it was from the way I was sitting, sometimes it was for no reason. It was an irritating feeling. It would last probably less than a minute, but it could happen a few times a day......sometimes both the feet and hands together. Ugh. Thankfully, this has stopped as well. I can't remember the last time my hands or feet tingled.
Appetite: What appetite?? I truly forget to eat. I have to sit there at night and try to figure out if I ate anything during the day. Most of the time I just can't seem to recall if I have. But I drink Diet Pepsi (zero calories), water with LOTS of ice with a straw, coffee with a bit of hot chocolate powder in it and Sugar Twin (zero calories) with milk). But as for food? Really, I don't WANT to eat. But I know I have to. So I have a frozen waffle. Today I actually had a bowl of hot cereal....that was a big meal for me!!!!! I know I NEED to eat, but I find myself drinking instead. Maybe I should buy those Breakfast Drinks? Any suggestions? Good news is that I've lost lots of weight. I can wear pants that I couldn't fit into last month. But I still Have a long way to go. I don't expect to weigh the sane as the old me, butI certainly want to get some more of this darn Remeron weight off me.
My ears will whoosh...kind-of. It was really bad at 75mg x2. Then it was much better at 100mg x2. Now I'm at 125mg x2 , and my ears still "whoosh"....but not constantly like they did when it first began. I don't really know how to explain it. It used to happen whenever I moved my head even the slightest, but not now. It rarely happens now, so I think at 150mg x2 it will be gone completely.
Eyesight: Boy oh boy, did that bother me at first in terms of reading books...or more especiallly the newspaper!!!! The letters would blur, and I would have to focus them back in. I would have to look away at something (anything!!!) so that my eyes adjusted properly, then quickly looked back at the paper to try to finish the article. As for books, I was getting the Large Print Editions! I felt like I was in Kindergarden! Lol. The problem is about 80% better now. I hope and pray it clears up completely, like everything else seems to be, but I don't know. I just may have to buy reading glasses.
I haven't noticed this at all, but my sister says that my hair is looking so nice now. Soft and growing out nicely. Hmmmmmm. I'm certainly not losing chunks of hair like some people do....I've got naturally thick hair....so maybe it's going to make me a beauty!!! Oh, that would be nice!
I can't think of anything else. I'm sure there are more. Please feel free to add to this list. It would be interesting to see what Topamax puts us through as we're adjusting.
Sandy
Posted by Storm Rider on March 28, 2006, at 19:34:18
In reply to Re: TOPAMAX and Hypothermia, posted by Aleese on March 27, 2006, at 17:01:29
> What TV sho are you on?
>
>At the moment I am the host/moderator of a programme called Not a Spectator Sport, based on the premise that we have only one chance to live and cannot afford to sit on the sidelines. We try to give people options to make informed decisions so they can get into the game so to speak...
a few weeks ago my guest was a suicide survivor...
her fiance committed suicide and she was left to pick up the pieces. Our purpose was to let other people know that life does go on and that their feelings are normal and to be expected; they will survive and life will continue... the feelings of anger, desolation, guilt, responsibility and on and on are all valid but no one is pointing fingers, in fact most people actually are not aware of what has happened... we have to pick up the pieces of our own lives, forgive and move on...
easy for me to say, I guess :(
the woman was incredible... we backlit the set so she had privacy and a degree of anonymity...
other guests have been battling addiction or living with addicts; grief counsellors discussing dealing with grief and moving on... we are a depressing bunch aren't we???
a man who works restoring Faberge eggs...
the Vanier Institute on the Family report on how Canadians are preparing for the future financially... and the answer is not well...
this week I have glory who is it? the show is tomorrow... and I have forgotten... next week I have a soldier back from Afghanistan and a soldier's wife, we will be talking about the attitudes they face and the lack of support from the public...
the week after that we are talking about railway safety... kids playing chicken with train engines and trying to hitch rides on passing trains...
and the last show of the season is about the sex bracelets in the elementary schools and floppy chickens, the games children play...My radio show, a two-hour show, as opposed to the one-hour tv show, is a different format, music and dialogue mixed, syndicated, and the theme varies from week to week according to my mood.. this week the theme is pacifists...
and scathing ...
I vent a lot of my moods and issues that way LOL don't need therapy ...as for the hypothermia thing...
I am wearing sweaters and a leather jacket and the rest of the people around me are out in short sleeves, even tank tops...
have lost another four pounds...
and last week has two massive seizures...
after six weeks seizure free...
life simply is not fair...I am protesting!!!!
Next fall I am kicking off the season with a show on health trends... the self-destructive baby boomers... and hope to have someone come and do a show on epilepsy and the community's or society's attitude toward epileptics...
and on the really fun side, saw the eye specialist last week, the one who sent me to the eye institute for the retina tests...
he said he would be referring me to a retinologist... when he said he would refer me to the eye institute, the waiting list was over a year, I was bumped up to under six months because I was the only person able to fit into the cancellation spot...
the retinologist appointment is for next week...
suddenly I begin to take this seriously...
with our overburdened medical system a quick appointment is no joke...another topic we have investigated on Spectator is our shortage of doctors and the long waiting lists...
kat
Posted by bridgey1128 on March 28, 2006, at 19:48:38
In reply to Re: TOPAMAX and Hypothermia » Aleese, posted by Storm Rider on March 28, 2006, at 19:34:18
Hmm makes me glad I pay for my insurance when I can get an appointment within a week usually at the most if not the same day or the next. Sometimes there are benefits to actually paying for one's insurance even if it's out the wazoo. Better Dr's, better medical care, but unfortunate that it's almost so expensive that one major medical mishap will put you in the poor house, although you will recover beautifully to pay for it for the rest of your life. :P
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