![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 24 of 24. This is the beginning of the thread.
Posted by Elzabeth on August 9, 2001, at 11:14:29
Was this subject previously addressed? Hands and feet falling asleep? Aside from that, my moods seem to improving ... some. My deep feelings of insufferable sadness are passing. I am crying more than ever. Maybe like the stages of death and dying, passing through tears are one of the stages of moving away from the intolerable sadness of depression.
But what about this needles and pins stuff with the hands and feet? XXX, E.
Posted by Mitch on August 9, 2001, at 12:38:35
In reply to Topamax: Hands/Feet Fall Asleep, posted by Elzabeth on August 9, 2001, at 11:14:29
> Was this subject previously addressed? Hands and feet falling asleep? Aside from that, my moods seem to improving ... some. My deep feelings of insufferable sadness are passing. I am crying more than ever. Maybe like the stages of death and dying, passing through tears are one of the stages of moving away from the intolerable sadness of depression.
>
> But what about this needles and pins stuff with the hands and feet? XXX, E.
Elza,That is quite common with Topamax and usually fades with time at the same dosage. I had it, but it turned into itchies too unfortunately.
Posted by Elzabeth on August 9, 2001, at 15:29:00
In reply to Re: Topamax: Hands/Feet Fall Asleep » Elzabeth, posted by Mitch on August 9, 2001, at 12:38:35
I hope I don't get the itching -- that has GOT to be intolerable. And if it DOES come, like the needles and pins, I hope it passes. Can you remind me ... how long have you been using Topamax. What dosage are you at now, and for how long? Does it seem to be helping? Thanks. XXX, E.
Posted by Mitch on August 9, 2001, at 23:31:46
In reply to Mitch -- Oh My!, posted by Elzabeth on August 9, 2001, at 15:29:00
> I hope I don't get the itching -- that has GOT to be intolerable. And if it DOES come, like the needles and pins, I hope it passes. Can you remind me ... how long have you been using Topamax. What dosage are you at now, and for how long? Does it seem to be helping? Thanks. XXX, E.
Wow there!I started off with TOP at the min. dose of 15mg at bedtime and then worked up to 50mg/day over about two weeks time with Neurontin, etc. I noticed some tingling at 25mg/day, and then at 50mg/day I really noticed it. BUT, I didn't get a RASH or something like that. It was just tingling that turned into a *little* scratching and itching-not some life-threatening stuff. Actually, the TOP got discontinued due to cognitive adverse effects NOT the paresthesia and mild pruritis. If I would have stayed on it longer it might have disappeared. If that is all you are experiencing then I wouldn't concern yourself. I also got a similar skin thing with Serzone and also with Vicodan-which was also relatively benign. When you start to see hives and/or a visible rash THEN some real concern is warranted.
Mitch
Posted by Kingfish on August 10, 2001, at 9:13:01
In reply to Topamax: Hands/Feet Fall Asleep, posted by Elzabeth on August 9, 2001, at 11:14:29
Hi! I'm one of the folks who has had success with Topamax. I had the tingling sensation, but it went away with time. I also had the cognitive problems, but they, too, went away with time. It took a few months, so I think you have to be patient. The only trouble I'm having now is sedation, but that "seems" to be rare.
Topamax has really helped my thought patterns, although I'm not sure it's helped reduce my manic episodes.
Good luck!
- K.
Posted by chloe on August 10, 2001, at 17:04:49
In reply to Re: Topamax: Hands/Feet Fall Asleep » Elzabeth, posted by Kingfish on August 10, 2001, at 9:13:01
> Hi! I'm one of the folks who has had success with Topamax.
Hi
I am so glad to hear that there are some folks who have stayed on this med long term. It's my impression that people can't tolerate the side effects over time.
I have finally gotten off Trileptal, and I am anxious to give Top. a try now. I have been in a nasty, hostile mood for days and don't feel able to cope with things at the moment.
However, I don't want to put too much stock in any med. I am often blasted by side effects, and just pray Top is helpful and tolerable for me. I just will have to take it slow and see I guess. Anything is better than this awful funk I am in now. And I was really hoping I could cope without a mood stabilizer....Kingfish, Do you have any skin problems on Top? That is my biggest problem with Trileptal. My skin burns and scalp has been so sore and dry for months. I also have been intolerant to the sun. Can I look forward to these things on Top too?
Also, how long have you taken it and what dose if you don't mind me asking. I am so glad it continues to help with your thought patterns.
Thanks,
Chloe
Posted by Kingfish on August 11, 2001, at 10:26:51
In reply to Re: Topamax: starting tonight, posted by chloe on August 10, 2001, at 17:04:49
I am very happy to contribute. It may help to know I am a female, 30. I am currently taking Prozac, 40 mg, and Neurontin @2400 mg. Topamax is at 250 mg, now. I think I'd like it to be a little higher. I just added Lamictal to the mix.
I am diagnosed as BPII, though I also have psychotic features during manic episodes, so it should be BPI in MHO.
The Neurontin acts as an adjunct to the Topamax for me. I am adding the Lamictal to hopefully counteract the sedation I experience from the Topamax, although, again, I don't think most people have this problem with Top. I seem to be a little odd, because Neurontin isn't sedating for me, and it is for most people. Go figure.
Unfortunately, I have only been taking it for about 9 months. I did have the following side effects for the first two months or so:
Tingling in hands and feet (that actually lasted longer)
Any carbonated beverage tasted strange
Had cognitive trouble - slurred a little (was as if I were drunk occasionally when I tried to talk or move. I thought it was funny...)
Had trouble spelling - of course I have worse trouble now that I'm on Prozac.
I did not have any skin problems on it, nor have I heard of that being a side effect.
But, no real physical side effects such as a headache or stomach trouble. I wasn't working in an office when I started it - I don't know how difficult that would be. People might not notice. I don't know.All side effects except sedation went away for me. And one day, after I got the dose up to 250 mg for a few weeks, and after I added Neurontin, everything clicked into place. (One note, Neurontin did nothing for me on its own).
I don't know. It seems like a lot of folks on this board didn't like it, but it's been good to me.
I think you have to titrate up really slowly - I don't think my pdoc did it slowly enough. I can't quite remember, but I think it was 50 mg a week (?). Another poster, who is unfortunately taking a break, AKC, is also in the midst of starting it, and having good results thus far. Hopefully she'll be back soon.
Good luck.
- K.
(sorry, that was LONG..)
Posted by chloe on August 11, 2001, at 14:26:40
In reply to Re: Topamax: starting tonight » chloe, posted by Kingfish on August 11, 2001, at 10:26:51
Thanks for the informative post.
I was so scared to try the Top last night. I have been through several med trials of late, and they have all failed.
I like you, am in my 30's, but have had debilitating depression/bipolar 2 or 3?/ some BPD and some "psychotic features" since age 12. I was managing pretty well for years with the use of antipsychotics and ad's. But when I got mild TD about 5 years ago, the struggle to find the right meds has been never ending. Nothing seems to be a good substitute for an AP.
I am starting really slow with 15 mgs Top for one week, then 30 mgs for one week, etc. I am very drug sensitive and don't imagine I will be able to tolerate a full dose. So far, I woke up feeling ok. I am so much more relaxed, it's wonderful. But I am celebrating I have nothing to do today, because I don't feel like I should drive or could really carry on a decent conversation. I do have heartburn and a bit of a tremor, but other than that no tingling. I was also really scared that my appetite would be obliterated. I have lost so much weight already from these awful mood stabilizers. They all wipe out any desire for food. Wouldn't be ironic if I put on weight with this one! BTW, have you lost weight with this med? I am wondering if I need to work at keeping the weight on...
FYI, I also take Neurontin. But I find it rather useless for strong anxiety. The main thing it does is make me mildly sleepy. I was taking 600mgs, but I was dizzy and had such dry skin, I dropped back to 300. Now I am wondering if I could drop it all together with the addition of Topamax. Top seems pretty sedating to me...But maybe that will wear off in time.
I also tried Lamictal for two weeks. I had an immediate hypomanic reaction to it. I also had insomnia and a lousy chronic headache. I started at the 5 mgs peds dose, but still just couldn't tolerate that energized/akethesia feeling. It may be useful to you for your sedation, in that respect. It seemed to have nice AD qualities for me, but I couldn't stay with it long enough to get any of the mood stabilizer effects.Thanks for your info about Top. I really hope this one works out for me. So far, so good!
And take it super slow on the Lamictal. I think it takes weeks to adjust to the initial dose. You really have to be patient. Which I wasn't!How is this for long!?! Keep in touch
Chloe
Posted by AKC on August 11, 2001, at 19:48:01
In reply to Re: Topamax: starting tonight, posted by chloe on August 10, 2001, at 17:04:49
Chloe,
I have been on a one-week break as Kingfish noted, but have decided to end my fast. I have now been on topamax for about 10 weeks. My biggest advice is to titrate up your dosage very, very slowly. The official literature from the pharmacy now says 25 to 50 mg per week, but everything I read on the net led me to believe that you should go no faster than 25 mg per week -- this is the rate I went up on it, and the side effects were minimal.
I had three main side effects. At first, and still from time to time, I would have some tingling in my feet. It has never been bad. The first couple of weeks, it would be a dozen times a day for a couple minutes, for three or four days after I increased a dose. Now it happens at most one or two times a week.
I had around the increase to 75 mg - 125 mg a little cognitive dulling. It lasted 1 to 3 days. It did not interfere too much with my job (I'm a lawyer, so that could have been really bad). I found it to be the worst if I had not got enough sleep the night before. I have not had any problems with that since the middle of July.
The only other problem I have had is that my menstrual cycle has been off since I have been on it. I use to be as regular as clock-work. For instance, I have been having pms symptoms for 5 days (mainly water retention) -- something I was lucky to really only experience for about a day all my life until now.
Now it appears I should have stopped increasing my dosage around 150 mg. I was doing very, very well at that level. My mood was very good, without being "high." I don't know if I had ever felt that level -- if so, it had been a long time since I have ever felt that way.
However,I wanted to keep going up to 200 mg for the hoped for better weight loss aspects of this medicine. Because it appears I am BPII, my doctor was worried if we kept increasing the topamax, we would trigger a mania, so she decreased my effexor as I continued increasing the topamax. About a week later (as I got up to 175 mg of topamax), I had a weekend where I was extremely anxious. I did not blame the meds -- I was under some stress at work, and thought it was "normal" anxiety. I realize now that it might not have been as "normal" as I thought it was.
Then last weekend, now up to 200 mg of topamax, out of the blue, I started crying uncontrollably. I don't cry. There was nothing going on - no triggers or anything. I preceded to sink into a very bad depression.
Are you doomed for that? In no way. I am very med sensitive -- I have learned this over the past two years. I should have known better than to try for a quick fix. Those always get you in trouble. Anyway, I am back down to 150 mg of topamax, and when my doc and I get things back leveled out, that is probably where I will be with that med. I was having a very good response to it, so I think it is a med I can be happy with -- just not a as high a dose as I was originally shooting for.
Good Luck.
AKC
Posted by anna on August 11, 2001, at 23:01:25
In reply to Re: Topamax: starting tonight » chloe, posted by AKC on August 11, 2001, at 19:48:01
> Chloe,
>
> I have been on a one-week break as Kingfish noted, but have decided to end my fast. I have now been on topamax for about 10 weeks. My biggest advice is to titrate up your dosage very, very slowly. The official literature from the pharmacy now says 25 to 50 mg per week, but everything I read on the net led me to believe that you should go no faster than 25 mg per week -- this is the rate I went up on it, and the side effects were minimal.
>
> I had three main side effects. At first, and still from time to time, I would have some tingling in my feet. It has never been bad. The first couple of weeks, it would be a dozen times a day for a couple minutes, for three or four days after I increased a dose. Now it happens at most one or two times a week.
>
> I had around the increase to 75 mg - 125 mg a little cognitive dulling. It lasted 1 to 3 days. It did not interfere too much with my job (I'm a lawyer, so that could have been really bad). I found it to be the worst if I had not got enough sleep the night before. I have not had any problems with that since the middle of July.
>
> The only other problem I have had is that my menstrual cycle has been off since I have been on it. I use to be as regular as clock-work. For instance, I have been having pms symptoms for 5 days (mainly water retention) -- something I was lucky to really only experience for about a day all my life until now.
>
> Now it appears I should have stopped increasing my dosage around 150 mg. I was doing very, very well at that level. My mood was very good, without being "high." I don't know if I had ever felt that level -- if so, it had been a long time since I have ever felt that way.
>
> However,I wanted to keep going up to 200 mg for the hoped for better weight loss aspects of this medicine. Because it appears I am BPII, my doctor was worried if we kept increasing the topamax, we would trigger a mania, so she decreased my effexor as I continued increasing the topamax. About a week later (as I got up to 175 mg of topamax), I had a weekend where I was extremely anxious. I did not blame the meds -- I was under some stress at work, and thought it was "normal" anxiety. I realize now that it might not have been as "normal" as I thought it was.
>
> Then last weekend, now up to 200 mg of topamax, out of the blue, I started crying uncontrollably. I don't cry. There was nothing going on - no triggers or anything. I preceded to sink into a very bad depression.
>
> Are you doomed for that? In no way. I am very med sensitive -- I have learned this over the past two years. I should have known better than to try for a quick fix. Those always get you in trouble. Anyway, I am back down to 150 mg of topamax, and when my doc and I get things back leveled out, that is probably where I will be with that med. I was having a very good response to it, so I think it is a med I can be happy with -- just not a as high a dose as I was originally shooting for.
>
> Good Luck.
>
> AKCHi, my pdoc has dx me with GAD/ major depression and is trying to rule out BP II. I am still trying to find a mix of meds that will help me. I pretty much know from fam history and my symptoms I am BP II. Anyway, along with Wellbutrin and Geodon my pdoc has gradually increased my topamax to 100 mg. My side effects are:
* mild tingling in hands and feet
* bad taste in mouth (I chew gum for this)
* low appetite (I need to lose weight!!!)
* rash!!! ICK! And I also itch pretty bad, and on different places on my body. I don't know if I should be concerned or not. No swelling of lips or anything wierd.
* skin breakdown, particularly on my hands (I am a nurse and wash my hands a lot) This is painful and I don't feel it is too safe.
I feel it is helping me and I don't want to quit taking it!!! I'll let you all know what my pdoc says on the 22nd!
Anna
Posted by Kingfish on August 12, 2001, at 15:04:34
In reply to Re: Topamax: starting tonight » Kingfish, posted by chloe on August 11, 2001, at 14:26:40
> It seems we've had somewhat similar experiences with meds.
I had mild TD from Zyprexa and gained weight as soon as I started it, so I'm really AP shy now.
I did loose a little weight after starting Topamax, but really only what I had gained. I am naturally fairly thin, and have stayed at about what my normal weight is. I guess if you had to work on keeping weight on, you could increase the carbs. That certainly seems to do it for most folks... but I'm sure you know your dietary needs well.
Yeah, the Neurontin is very light for me, too. I don't think it makes a big difference whether I take it or not at this point.
And the Lamictal - very bad headache. Still. Am calling my doc tomorrow. It may not be the solution for me. I don't know. I'm not a very patient person. Especially after all this time of not feeling well...
Anyhoo, sounds like your doc is on top of the dosage with the Topamax, and hopefully starting that slowly will rule our severe side effects. Let us know!
- K.
(Sorry for the double posting).
Posted by chloe on August 12, 2001, at 19:18:37
In reply to Re: Topamax: starting tonight » chloe, posted by AKC on August 11, 2001, at 19:48:01
AKC,Anna and Kingfish,
Thank you SO much for your posts. It has been so helpful to get info about this med from the frontlines.So far, I have very few negative effects. I do have some dizziness and ditziness! but I don't mind being a little slow at the moment. I went to the bagel shop for breakfast, and I was asked what I wanted, and all I could say was "ahh..." Even though I knew exactly what I wanted, I just couldn't say it right away! I laughed about it later. Something that I haven't been doing much. I also find that I am not ruminating so much about every stupid thing that happens during the day. Ahh.
Top. seems to have a mild activating property, though at times I feel kind of somnolent. I am finding about 2 in the afternoon, I get a bit nervous and gitty. I also get a tremor. I wonder if the blood level is getting low or high or something...But if I channel the anxiety well, I end up feeling good and optimistic. I hope the anxiety doesn't increase though...Anyone else experiencing anxiety during the day with top?
Lastly, I do have some strange sensations on my skin all over my body. My face has tingled, also the back of my legs. I also feel a little itchy esp on my calves! But not bad.
Anna, I would really suggest seeing a dermatologist. There may be some creams or special soaps that can help your condition, so you don't have to d/c a good med for you. I know that the "antibacterial" soaps that are everywhere nowadays, make the skin on my hands peel off too. It hurts and looks awful. So I have learned to avoid such soaps. You might consider bringing a special soap to work...
Thanks everyone. You people are really terrific and supportive.
Chloe
Posted by anna on August 12, 2001, at 22:04:27
In reply to Re: Topamax: day 3, posted by chloe on August 12, 2001, at 19:18:37
>
> AKC,Anna and Kingfish,
> Thank you SO much for your posts. It has been so helpful to get info about this med from the frontlines.
>
> So far, I have very few negative effects. I do have some dizziness and ditziness! but I don't mind being a little slow at the moment. I went to the bagel shop for breakfast, and I was asked what I wanted, and all I could say was "ahh..." Even though I knew exactly what I wanted, I just couldn't say it right away! I laughed about it later. Something that I haven't been doing much. I also find that I am not ruminating so much about every stupid thing that happens during the day. Ahh.
>
> Top. seems to have a mild activating property, though at times I feel kind of somnolent. I am finding about 2 in the afternoon, I get a bit nervous and gitty. I also get a tremor. I wonder if the blood level is getting low or high or something...But if I channel the anxiety well, I end up feeling good and optimistic. I hope the anxiety doesn't increase though...Anyone else experiencing anxiety during the day with top?
>
> Lastly, I do have some strange sensations on my skin all over my body. My face has tingled, also the back of my legs. I also feel a little itchy esp on my calves! But not bad.
>
> Anna, I would really suggest seeing a dermatologist. There may be some creams or special soaps that can help your condition, so you don't have to d/c a good med for you. I know that the "antibacterial" soaps that are everywhere nowadays, make the skin on my hands peel off too. It hurts and looks awful. So I have learned to avoid such soaps. You might consider bringing a special soap to work...
>
> Thanks everyone. You people are really terrific and supportive.
> ChloeChloe, I also have anxiety that seems to worsen in the afternoon but I just attributed this to burn out from my kids or work, lol. But seriously, it is when I need my klonopin the most to settle me.
Also, I really will take your advice and consult with a Derm. This is driving me insane, and I am already using soaps for "sensitive skin". Good luck to you,
Anna
Posted by chloe on August 13, 2001, at 10:00:06
In reply to Re: Topamax: day 3, posted by anna on August 12, 2001, at 22:04:27
Hi
this is the 4th day on 15 mgs of Topamax and I feel the anxiety and tremors getting worse. I also am not sleeping soundly, though I am not a great sleeper anyway. I was just hoping Top. wouldn't make the early morning waking stuff worse.I also have terrible jaw pain on my left side. It hurts to open my mouth or chew. Is this TMJ? OH MY, it hurt and it going to make eating pretty tough if this persists. Could I be clenching and not knowing it?
I so, so hope this is start up issue with Top. Because so far I really like how my brain feels. I am not as overreactive and short fused as normal. I also feel less depressed (though no hypomania, yeah!). I am SO SENSITIVE to activating meds. Does anyone know if this med is on the buzzy side? My impression was that is was NOT. I switched from Trileptal because that was activating!Does anyone know if the anxiety lessen or abate as the dosage increases?
I am a terrible gunniea pig.
Thanx
Chloe
Posted by chloe on August 13, 2001, at 10:19:22
In reply to Re: Topamax: day 3, posted by anna on August 12, 2001, at 22:04:27
I also have anxiety that seems to worsen in the afternoon but I just attributed this to burn out from my kids or work, lol. But seriously, it is when I need my klonopin the most to settle me.
>
>Anna, and all the other supermoms,
I don't know how you manage, but I admire you tremendously. You all seem to have amazing courage and fortitude.And thanks for tip about the benzos.
Chloe
Posted by Kingfish on August 13, 2001, at 10:48:20
In reply to Re: Topamax: Activating???, posted by chloe on August 13, 2001, at 10:00:06
Chloe:
Topamax was never activating for me, but, as I'm sure you know and have heard a million times, everyone is different. I think it's good that you notice these things so well. I just "put up" with side effects for too long and am just now learning to call my pdoc sooner rather than later.
Again, taking Neurontin every four hours or so throughout the day helped me with Topamax but, and this is really weird, it helped curb the sedation a little, not activation. I would think for most people it would do the opposite, though.
I also slept better on the Topamax and no skin trouble.
Here's what I'm thinking for myself.
I'm thinking of sticking with the Topamax (I had thought of quitting because of the sedation). My pdoc has wanted me to stay with it because, as you're describing, it helped control ruminating thoughts, and just helped thought patterns in general as I think I mentioned. Also, for the first months, no mania.
Prozac has made me anxious and manic, I think, so I may give in and take a sleeping aid at night (I really didn't want to do that). OR, I might switch to Provigil, a anti-narcoleptic that my pdoc wanted me to try which has promising AD properties.
The Lamictal made me really ill last week at 50 mg (forgive me if I already posted this - the Prozac has dumbed me down). And I don't think I'm patient enough to up this drug as slowly as I have to.
I have resisted taking medication to counter-act side-effects from other medications but it seems that often happens.
So, if the Topamax seems to be helping in general, perhaps a Benzo or Neurontin might help.
Keep us up to date and I'll let you know what happens after I talk to my pdoc.
- K.
Posted by chloe on August 13, 2001, at 12:40:18
In reply to Re: Topamax: Activating??? » chloe, posted by Kingfish on August 13, 2001, at 10:48:20
K
I am sorry you are having so much trouble finding the right mix. I am in the same boat. I hate to add more meds to make one ok med more tolerable. But I guess that is where we are at in the medication world.I am a bit foggy today, and can't exactly follow why you might need a sleep aid if you are having sedation problems...But I can totally understand your dissatifaction with Lamictal. I could not adjust to that stuff. And did not feel like I wanted to deal with those side effects on a long term basis. I think you know when a drug doesn't agree with your body or your lifestyle.
Good luck getting hold of your pdoc. I hope you get some helpful advice. Provigil sounds interesting for your sedation...
I am going to keep chipping away with the top, neurontin and valium and see if I can tolerate the anxiety/tremor. It is amazing how everyone reacts so differently to these compounds!
Let us know how you do.
Thanks again
Chloe
Posted by akc on August 13, 2001, at 12:54:00
In reply to Re: Topamax: Activating??? » Kingfish, posted by chloe on August 13, 2001, at 12:40:18
> I hate to add more meds to make one ok med more tolerable.YES! Oh, how I hate this. Hate it, hate it, hate it. (Can you picture me stomping my foot in the middle of the room?).
One reason I switched from lithium to topamax is that to get a dose of lithium that works for me, it supresses my thyroid -- I didn't like the idea that I would then need to take thyroid supplements to make that right. Now I am back on the lithium, for how long, I don't know. Sigh.
AKC
Posted by Kingfish on August 13, 2001, at 13:08:59
In reply to Re: Topamax: Activating??? » chloe, posted by akc on August 13, 2001, at 12:54:00
>
> > I hate to add more meds to make one ok med more tolerable.
>
> YES! Oh, how I hate this. Hate it, hate it, hate it. (Can you picture me stomping my foot in the middle of the room?).
=============
> Thanks, AKC, that makes me feel better. My pdoc certainly doesn't seem to understand the concern. I think I'm just sitting on Dr. Bob's site all day today... :)
Posted by chloe on August 13, 2001, at 19:57:28
In reply to Re: Topamax: Activating??? » chloe, posted by akc on August 13, 2001, at 12:54:00
>
> One reason I switched from lithium to topamax is that to get a dose of lithium that works for me, it supresses my thyroid -- I didn't like the idea that I would then need to take thyroid supplements to make that right. Now I am back on the lithium, for how long, I don't know. Sigh.
AKC,
Did you discontinue the Topamax? I know you had a tough time when you pushed the dose. Were you unable to restablize at 150 mgs? Did you find that anxiety became an issue with Topamax?I sure am find it more activating than I expected. But so far, I am tolerating it ok, hallelujah! I haven't had a good stretch in a while, and I feel "due!" Here's hoping!
That is rough about the Li and thyroid. I think I would be stomping my feet too. Hang in there and thanks,
Chloe
Posted by AKC on August 13, 2001, at 20:58:25
In reply to Re: Topamax: Activating??? » akc, posted by chloe on August 13, 2001, at 19:57:28
> AKC,
> Did you discontinue the Topamax? I know you had a tough time when you pushed the dose. Were you unable to restablize at 150 mgs? Did you find that anxiety became an issue with Topamax?
>No -- I am at 150 mg and holding. I crashed 9 days ago. The day after, while my pdoc was still out of town, I on my own went down to the 150 on the topamax and back up to the 75 mg on the Effexor -- a level that had me at a pretty steady state for a few weeks. My pdoc got back the next day and I was still crashing, so she started to add back in the lithium. As I continued to crash, we quickly went back up to 900 mg of lithium - the level I was at before we decided to try the topamax. So now I am on both. I see her again on Wednesday. I am sure we will discuss pulling me back off the lithium. I didn't have as much trouble today with the anxiety -- could be that the lithium is already supressing my thyroid and I am on my way to sedation city. Or it could be that with the lower dose of topamax, I am not as activiated. I am only now suspecting that the topamax might have been adding to the anxiety I was having prior to my crash. When I was at 175 mg I had a rough weekend, but blamed it on work -- labeled it "normal" anxiety. Looking back, I am not sure it was so normal. It is hard to tell with all the changes in meds the past two weeks. I'll keep you posted.
AKC
Posted by Not me on November 19, 2003, at 16:05:14
In reply to Re: Topamax/results and side effects, posted by anna on August 11, 2001, at 23:01:25
Just wanted to add my experiences here to the board. Not to frighten, just to inform. I started Topamax for migraines. I was concerned about taking Imitrex daily and the doctor had this new drug that would prevent migraines. Sounded great. Only side effect that she mentioned was rapid weight loss. (I need to lose 40 pounds so that didn't sound that bad)
I started 25 mg Topomax on November 3. I had an MRI on November 5, and it caused my left arm to swell. I went to the doctor on November 10 (does this seem like a person in a panic to you? Or more like a person who HATES to call the doctor.) I was diagnosed with pheblitis in the left leg and swelling of the arm and given a Medrol dose pack (which I may also have allergies to) and sent home. I started 50 mg Topomax that night. In the first week, I had already lost 4 pounds! (With diet and exercise, I typically lose 3 pounds a month!)
On Tuesday, I lost all interested in anything other than the blood clot (phlebitis in my leg). I couldn't make myself eat very much, and I was terrified to be alone. As the week progressed, my symptoms got worse. On Wednesday, I called the doctors office. On Thursday, I went to the doctor to see about my arm that now also had a blood clot (phlebitis) in it, and to ask her about lowering the Topomax. I was having terrible panic attacks, and could not focus on anything. My head felt like it had a million bees flying around it. The doctor referred me to a Vascular Surgeon and left the room, we didn't discuss the Topomax. (I had now lost 3 more pounds) The next day, I ate 2 level TBS of icecream for breakfast, one PB sandwich, and 5 grapes over a period of an hour for lunch and one cluster of crab legs for supper-They were all forced to myself, because I was terrified by the fact that food was making me gag. Not only had I stopped eating and drinking like I normally did, but I had severe diarrhea and night sweats. I dropped the dose of topomax back to 25 mgs on my own. On Monday, November 17, I called the doctor to see if I could stop the medicine, and she assured me that my sides effects (insomnia, panic attacks (constantly-I don't take any other meds) rapid heartbeat, numbness from the breast up, inability to sit still, total inability to eat, sleep and concentrate were not due to Topomax. I had been on it for 2 weeks and lost 7 pounds. That night I did not sleep more than 3 hours, and the next day, I was terrified to be alone. (This from the woman who danced her youngest off to kindergarten just a few months ago and couldn't wait to be home alone) After going 48 hours with little sleep, I took a sleeping pill and got some rest.
It has now been 3 days since I took a dose of Topomax. I am having no panic attacks, although my body occationally does still respond as if I am. My face still feels numb and I am still having trouble concentrating. The fear to be alone is slowly going away, although my mom was here all day, so that may be why I don't feel that anxious about it today. I still can't seem to sit still for more than one second at a time. I hope to sleep better tonight. I got for an ultra sound of my arm on Friday to see if the phlebitis is all we are really dealing with. But I was calm when the doctor told me. (A week ago, I would have freaked out.)
In the last two weeks, I can't tell you if my kids have eaten, bathed, done homework, anything. I have been in a daze. Haven't had a headache, but I haven't had the ability to take care of myself or my family either. I am sure my results were not typical, as I sensitive to drugs and tend to respond weirdly to even over the counter drugs. I don't want to discourage someone who needs this drug to save thier life from taking it, but they need to know that they need to go slow (my first mistake), have a doctor that will work with them and believe the symptoms they are having could be caused by his/her wonder drug (my second mistake) and thirdly, if it doesn't work, not be afraid to say, it isn't working. I knew the first day I took the 50 mg it wasn't working and yet I did it for 4 more days. Then dropped to 25 for 3 more after that.IF I needed this drug for Epilepsy, I would try and take it. For weight loss, NO WAY. For migraines, probably not. I wanted to only have to take one pill. Seems with this drug, you need something for the panic attacks (Wellbutrin), something for the insomnia, something for the tingling... The list goes on. So I am back where I started.
And NO I do not think the Topomax caused the blood clots (phlebitis). I have small veins, and get them when I have to have an IV injection. The doctor is trying to figure out why, but the Topomax wasn't responsible for that.
I am thankfully drug free, and hopefully symptom free in the weeks to come. Today has been one of the best days I have had in November.
Posted by Showtime on April 5, 2004, at 1:36:41
In reply to Re: Topamax: Activating???, posted by chloe on August 13, 2001, at 10:00:06
This is my first posting. I've been looking everywhere for someone that has had a similar experience as I did on Topamax. I've been struggling with depression/anxiety and self-destructive tendencies for 2 years now. My psych. put me on Topamax (with Lexapro for depression) and even with the first small dose I felt the best I had ever felt in my entire life. I suddenly could see the world so clear and life was so simple. I had so much love and compassion for people. I became wise beyond my years and had personal revelations daily. It was the best experience ever and would last for about 5 days and then I would taper off after and we would increase my dose and it would happen all over again...and again...and again. I stopped taking the meds for reasons I can't remember (a side effect of the new meds I'm on). I didn't think anything of it until I saw a show the other night about Ectasy. I've never done drugs but the effects they listed sounded exactly like what I experienced. Has anyone ever heard of this or experienced it themselves? Am I alone with this one?
Posted by jdgjdg on April 5, 2004, at 21:47:49
In reply to Re: Topamax/results and side effects, posted by anna on August 11, 2001, at 23:01:25
Anna, definitely talk to your pdoc asap about the rash. This can be a dangerous side effect of the Topamax that should be reported. Jenn
This is the end of the thread.
Psycho-Babble Medication | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
Copyright 2006-17 Robert Hsiung.
Owned and operated by Dr. Bob LLC and not the University of Chicago.