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i just upped the topamax to 75 mg, and was looking forward to retrying the lexapro, but then the pins-and-needles paresthesia in my fingers and toes (that started at 50 mg) got even worse. and i really don't think the topamax is stabilizing me much (if at all) anyway. so at this point, the list of side effects that are supposedly transient, and may go away if and when i hit the right dosage, include:

dizziness

exhaustion

hellacious thirst

loss of appetite/weight loss

taste distortion

upset stomach/diarrhea

anorgasmia

paresthesia

extreme mind-numbing stupidity

so i'm giving up on it, which means i can't start the lexapro either, because it'll make me manic without the topa to anchor me. pdoc's office is closed until 1/2. wish me luck. just needed to vent.

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OK. At this point I'm about ready to write to the FDA and the makers of topamax and say they need to include a new blackbox warning: "When prescribing offlabel for mood disorders DO NOT give to pussies"

I never did do the odds. Just straight 50s and 100s. Maybe that was my prob? Shot up 50/week every time I was on it? Skipped most physical effects?

Never MIND I was actually willing to give it TIME to WORK. Forget about that stuff like forgetting where i parked at Wal-Mart. Or where I lived. Or what my name was.

Along with most of those effects you list. Oh and BTW I STILL have, um, the thirst and appetite and some taste issues and some stupidity and WOULD have weight loss if I was on the proper dose and therefore not drinking so much.

So you didn't want to up the topa and therefore are afraid to start the lex.

Cry me a frackin' river.

This needs to be in the AC forum really...

OK. At this point I'm about ready to write to the FDA and the makers of topamax and say they need to include a new blackbox warning: "When prescribing offlabel for mood disorders DO NOT give to pussies"

I never did do the odds. Just straight 50s and 100s. Maybe that was my prob? Shot up 50/week every time I was on it? Skipped most physical effects?

Never MIND I was actually willing to give it TIME to WORK. Forget about that stuff like forgetting where i parked at Wal-Mart. Or where I lived. Or what my name was.

Along with most of those effects you list. Oh and BTW I STILL have, um, the thirst and appetite and some taste issues and some stupidity and WOULD have weight loss if I was on the proper dose and therefore not drinking so much.

So you didn't want to up the topa and therefore are afraid to start the lex.

Cry me a frackin' river.

This needs to be in the AC forum really...

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FYI. The paresthesias generally get better, in my experience and in the experience of people I know who take it. But they do intensify before they die off.

Often the stupids get better; when I was taking it, I had a dramatic return of brains at HIGHER doses. We screwed around with the dose for much of the summer. There is a clear line at which my brains re-congeal, and, if I get below that line, I'm sort of the epitome of "Be Here Now [because I Can't Remember Where I Was 10 Minutes Ago.]"

Exhaustion - took some messing with the timing. Unless you mean exercise intolerance due to new-onset unsurprising hypoglycemia, which just made me remember to eat something real before I went out and slung bales around.

Thirst - hell, I'm on lithium, I don't even notice thirst as an adverse effect anymore. No insight there.

Taste perversion - yup. Never got better. I took a sip of a friend's wine and spit it out, which isn't my usual reaction to really, really nice Carmenere. I made some chili that was almost inedible.

Note: if you're going to stop it, talk to your doc first so s/he knows what's going on if you call and are on maximum overdrive. This is pure anecdata, but note that I've had a couple rebound hypomanias on D/Cing it. Both times were relatively abrupt and per MD orders, and both times were pretty unpleasant, and very different from the time I was able to taper off. Nothing like the stunning rebound from lithium d/c, but, still, worth considering...

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Maybe there should be a sticky about topamax stating the following that always must be explained to people over and over:

It takes a while to find that "sweet spot"

While you are titrating up, side effects are usually worse

Some, Most, or All of the side effects will go away, YMMV

You have to give it enough time to work

When coming off topamax, taper down!

Did I miss anything?

Croix

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Yeah, 50-75mg/dag is approximately nothing. I'd be more surprised if that much were doing anything noteworthy in terms of keeping you stable than if it weren't. Did everyone get together in the past day or two and decide they're not going to put up with their meds and even give them a chance to work or something? How long have you actually been on it, and how long at each dosage? I get the impression from your post that the answers are "not very long" and "even less long than that", although you didn't really say. It certainly is possible that it's the wrong med for you, but at this point it could be just as possible that it's the right one, but you'd never know one way or the other if you're in such a hurry to get rid of it. Some of the side effects can be fairly dosage-dependent, and whether they are or not, they can also get better or go away with time, but that involves actually waiting through that time for your body to adjust to it. Under 100mg/day over the course of (presumably) a few short weeks is probably not going to give you anything but side effects, and surprise, surprise, that's what's happened so far. While it is definitely up to you and your doctor whether you stop it (if it's intolerable) or keep going (if you can put up with it a bit longer), I don't think it would be entirely fair to claim that at this point you've given it ideal conditions to see whether it would help or not.

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Hey Zenbean,

I'm sorry you're having problems with side effects, they can be a real bitch. Sometimes mine are disabling to an extent.

All meds have side effects. You're the only one who know whether or not you can stick it out. I know you'll talk to your Pdoc.

By the way, I don't think you are a pussy. Going on and off drugs is scary for most people especially for those of us who have not found the right cocktail yet. You are persistent and courageous, my friend.

In the beginning I was not used to having to deal with side effects and went off Lamictal for good after trying it twice for a short period of time. Three years later, after nothing had worked, I tried Lamictal a third time and got really good results. We're still adjusting the dosage and I'm still having side effects (at many times debilitating ones) but I'm hanging in there (not fun) because the drug has bee effective for me.

I know you'll make the right decision for you. (I've never tried Topomax)

My best,

SO

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Hey Bean - this sucks....bc it means you haven't started Lexi yet....your dosage is very low and I'm not sure why they bounced you up to 75 and not up to 100 after the 50...Topa isn't usually one that requires that slow of a titration. I'm not sure how med sensitive you usually are...I'm pretty sensitive....it took about a month before my fingers and toes stopped giving me the zaps...the bottom of my feet will still get a little tingly if I push one by itself for too long...I guess to remind me that my posture sucks...lol.

I think it took me at least a month for all of the other side effects you mentioned to disappear too...although, I was never exhausted, but I generally took my meds before bed....the upset stomach went away after about 2 weeks for me though...are you sure that all of this is the Topa? Were you coming down off of another med at the same time? (I can't remember).

I know this was a really hard decision for you and you were feeling pretty crappy before you made it....but I don't think you should quit the Topa yet, at least not before your doc's office is back open - if anything, bounce back down to the 50 or try to bounce up to 100 (if you have enough meds for that). I know that's generally bad advice to give here - and I'm not a fan of telling people to mess with their meds, but if it's a matter of just quitting and having nothing at all or going back down to something that worked a little bit better...I dunno, seems like a better option to me...plus, just quitting Topa is a BAD idea - the SE's from that suck a helluva lot worse than what you've listed below (I've been up and down the scale trying to find my sweet spot and fuck everyone and their brother who's around me when we start coming back down the Topa scale...seriously, it sucks).

I wish you luck - it's a crappy time of year to have to deal with this and I know it hasn't been easy for you...but I have faith that you'll do what's best for you and come out the other side feeling better.

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cns, i'm gonna forgive you for calling me a pussy, because 1) i know i'm not and 2) as you keep telling us, you're an asshole. also, i have a serious question for you:

i know you work. did you keep working while you were titrating up on the topa? if so, how? i'm serious. i can't remember anything. my client's names, where they live (i have to do home visits), what they said to me 30 seconds ago. i'm afraid of losing my job, and i can't afford to do that. i'm used to adjusting for some level of memory/word-finding problems due to other meds i've been on, so i'm obsessive about writing everything down, making lists, double-checking myself, etc. but i'm barely functional on this. actually, this is an open question for anyone. if you still have the stupidity side effect, how do you work around it? are there tips and tricks you can share? please?

those of you who are pointing out i haven't been on it long are right. it's only been several weeks. i was tapering off the lamictal until 12/15, so there may have been some withdrawal sx going on too. as you all know by now, my mom died this year after a long battle with cancer; i was her primary caretaker; and this, of course, is my first holiday season without her. it's also my first holiday season estranged from my brother, who chose to be a complete asshole while my mother was dying and cut me off because i dared to ask him for some help, and i always spent holidays with him and his family and my mom and stepdad, so this is an extremely stressful and emotional time for me. i'm not offering this an excuse, just an explanation that i realize my judgement may not be the best at the moment and there are reasons for it.

you're all making good points and i'm hearing you. i understand the concept of hanging in there until you hit the sweet spot and that the side effects may be in inverse proportion to the dosage. and that i may be on too small a dosage to know yet whether it's doing anything. so i'm thinking, now, about not stopping it. (yes, i just started titrating down, i know better than to stop abruptly.)

but i have to tell ya, i feel so much better since i started titrating down. like i'm coming out of a coma. but i know too that could be hypomania whispering in my ear...

i haven't decided what to do, but i'll really think about what you've all said. ty for the replies, and if you can give me more feedback on dealing with the dumbness, i'd appreciate it.

sorry this is long, and sorry it's in the wrong forum. maybe one of the mods can move it if need be.

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cns, i'm gonna forgive you for calling me a pussy, because 1) i know i'm not and 2) as you keep telling us, you're an asshole. also, i have a serious question for you:

i know you work. did you keep working while you were titrating up on the topa? if so, how? i'm serious. i can't remember anything. my client's names, where they live (i have to do home visits), what they said to me 30 seconds ago. i'm afraid of losing my job, and i can't afford to do that. i'm used to adjusting for some level of memory/word-finding problems due to other meds i've been on, so i'm obsessive about writing everything down, making lists, double-checking myself, etc. but i'm barely functional on this. actually, this is an open question for anyone. if you still have the stupidity side effect, how do you work around it? are there tips and tricks you can share? please?

You're right--I AM an asshole. Also, for some reason, lately God seems to be taking a liking to crapping on me. Not your problem, not an excuse. Not at all.

So.

The first time I was on topa I had the worst cognitive probs. Not working, just lookig for work and in rehab and on probation--no real biggie but weird in that I could mostly think through say job search stuff even if I'd walk into the bank and forget my name.

These last two times though HAVE been while working. Lately thinking's been a prob. Triple checking's been a necessity--BUT could be a large part of being batshit. Sadly I really lean on my fiancee to help me function. And SHE'S on SSI in part cuz she don't think too well herself--shit, I'm her rep payee cuz they decided she can't handle money. Amongst other things.

Writing things down is key--well at work the thing they always say is "document document document" cuz of the possibility of a court case. All too often I don't cuz I don't care, unless I think it'll be something really important, but I really try sometimes cuz I DO forget a person's name or company when they call in on the queue line--or I always forget to ask for a callback number and then fuck something up and hope they call back so it can be fixed.

Sometimes I don't know what I forget and what I just haven't been told--my training was kinda crappy and there's some shit I just never deal with. Recently there was a to-do cuz one of my accounts kinda-shoulda been held up cuz they didn't pay their first invoice back in March. Usually no biggie, except it was a SEVEN THOUSAND DOLLAR invoice. Not like the usual couple hundred or so dollars.

So yeah. Whether or not it's the topamax, my mind...it ain't always where it's supposed to be. And shit gets fucked up so I get stepped on so I step on someone and people get pissy. And I come home after a day of dealing with technical shit and realize I can't even make a decision about fucking DINNER. But I just can't afford, mentally, emotionally, to quit the topa.

Life's tough. Good thing I got's a hard head.

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did you keep working while you were titrating up on the topa? if so, how? i'm serious. i can't remember anything. my client's names, where they live (i have to do home visits), what they said to me 30 seconds ago. i'm afraid of losing my job, and i can't afford to do that. i'm used to adjusting for some level of memory/word-finding problems due to other meds i've been on, so i'm obsessive about writing everything down, making lists, double-checking myself, etc. but i'm barely functional on this. actually, this is an open question for anyone. if you still have the stupidity side effect, how do you work around it? are there tips and tricks you can share? please?

I write everything down (as you have been doing, I know.) Everything. Did I say I'm going to take the trash out? Make a note of it. I tried little audio memos but I kept losing the damn recorder or forgetting to check it.

I ruin PDAs. I think they'd be useful here, but mine tend to get eaten by dogs or stomped by livestock or frozen in the car overnight.

I scheduled in 10-15 min "catch up" blocks in which I worked through my little book, crossing things off one line at a time, in order, not by importance.

I hate Windows, but we use it at work. Outlook's reminders have saved me many times. The damn thing emails my phone if I'm not by the computer to turn it off.

I threw myself on the mercy of my coworkers. Remind me. If I forget, ask. If I tell you I'm going to do something and I don't write it down, call me on it. Whenever possible, please email me instead of asking me verbally, because I can reference email. Do not let me say, "I'll get to that later." Put it in front of me, make me sign it, take it away. I changed my voice mail. "If you don't hear back from me within 2 days, call me back, please."

I live in a smallish town. So at least when I forgot where I was going, I could sort of, uh, drive around until something looked important.

I'd make notes in advance for meetings, etc., whenever a random relevant neutrino thought zipped through my brain. They'd show up on the reminder note in outlook.

Probably nothing you haven't thought of already... sorry.

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Yup - what Silver said - I email myself constantly - I set up reminders on my iPhone so that the thing annoyingly beeps at me - random stuff too - at first it was - "Did you shower and brush your teeth today?"...when I first started Topa, I kept forgetting to brush my teeth - I'm fanatical about my teeth and was veeery frustrated by this. I started emailing myself a long time ago - mostly for my ADD - it helped to have that visual, especially at work - I wouldn't delete the email until the issue was resolved. Forgetting words...well, I'd just talk around it - I have a thesaurus like brain, so that helps...but a few times, people would just stare at me funny. I hate that feeling, but realized it was the drugs, not me...like CNS said, it was better than believing my hubby was having an affair and everyone was out to get me and feeling like I needed to murder old ladies in the super market bc they were intentionally blocking me from the mallowmars.

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ok, well i took what you all said under serious consideration, and decided that yeah, i didn't give the topa a fair try, and it wasn't a good idea to quit a med when the pdoc won't be available for more than a week. so i did start titrating back up again, which wasn't too big a production since i'd just been tapering down a couple of days. so thanks for the tough love. (whip me, beat me, make me take my meds.)

who knows? i may end up hating it as much as i do now, but at least i'll know i gave it a fair shot, and i won't welcome in 2008 all manic and twitchy and shit. i hate that.

cns, silver, and danger, thank you for the anti-stupidity tips. they all seem to boil down to even more increased vigilance - which i'm not sure i have any more energy for - but i surely do appreciate them, and i appreciate the support. (although silver - you're lucky to live in a smallish town - i work in a mid-size city with a whacked traffic pattern, so when i get lost, i can get really lost. oh well, i guess that's what cell phones and friendly coworkers are for, right? though it's kinda hard to explain how you got lost going somewhere you've been dozens of times before...)

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Dude. Maybe one of those TomToms or other GPS thingies?

I'm fairly lucky--when I always thought I'd driven past my road i was actually like a quarter mile before it. Good thing, cuz even after four years out here, I still don't know the lay of the land beyond my road--I'd have to drive like 4-5 miles to the next intersection, turn around, come back to the community center a half mile from my house, turn around there, and come back! Just because of the speed and blind curves, really, that's like and extra 10-11 miles if I zipped past my road, unless I lucked out on a road I could se in time to hit the brakes and turn onto.

I'm just glad I've lived in the same town for 30 years...

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Zen, It's good to hear that you are going to stick with it a little while longer. (At least until you have another doc appt and can talk to him about it)

I really had almost every single side effect from topamax. It took a little over 2 months for the severe tingling to go away. I still got some slight sensations in my feet occasionally after that, but they were few and far between. The stupids got better.... or I got better at reminding myself and keeping notes. It didn't bother me after a couple of months though. The nausea went away, but I never did get my appetite back. But Good Lord, did it chill me out. I was STABLE on it. And I slept like a champ.

It just took a couple of months of sticking it out. Totally worth it. I wish I could have stayed on it, it worked so well.

Just hang in there a little while longer, talk to your doc about it, and be reassured that if it is the drug for you, it is so worth it to deal with the side effects until your dosage is correct.

good luck

Croix

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gps sounds like a good idea, cns!

thanks for the encouragement, croix. you've probably said elsewhere, but i can't remember - why did you have to go off the topamax? sounds like it worked really well for you.

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How are you doin now Bean? I'm coming off my Topa and feeling like the stupids is worth the price to pay for peace...the bitch is back for me...and I don't like her one iota....kinda stuck myself...will have to wait and see if the Lamictal kicks in and takes the place of the Topa...so I'm hanging in the balance with ya...if the Lamictal doesn't level me out, I'm going right back to my Topa, I'll tell ya what...I don't care if I forget my own name...or any other damned thing for that matter. I like ME better when I'm on it. Just chuckin this in here to let you know that sometimes the SE's really are worth it....I hope you're doing well and not suffering too much as you balance out the meds.

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I had to quit taking it because of the weight loss side effect. It was such a huge appetite supressant for me and I lost so much weight that it made me sick. And I was only on it for about seven months.

I just recently started lamictal, and so far so good, but I haven't been on it long enough to form an educated opinion just yet. I miss it though. If the lamictal doesn't work out I may try it again. (You don't always get the weight loss side effect the second time around).

Croix

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hi danger and croix,

we're having the opposite experiences of each other. i'd KILL to be back on the lamictal. it made me feel great (stable, happy, no need for a separate AD, slept like a baby) with no SE except a little dizziness until the skin stuff started happening. i'm still not impressed with the topamax - up to 75 mg now, SE continuing as they were - maybe 100 mg will be the "sweet spot." i restarted the lexapro at 5 mg/day, as it made me speedy pretty quickly last time. even the 5 mg made me squirrelly, so i'm now taking 5 mg every other day (as per pdoc's instructions). i'll try 5 mg daily when i'm on 100 mg topa and see how that goes. i may need a different AD. but i guess the topa is doing something, because i started feeling some rebound mania on just the few days i was starting to taper off.

i saw the dermatologist two weeks ago, and she wants me to restart the lamictal at some point and see if the bumps come back. she says its the only way to make sure the lamictal was causing it, which makes sense, but it hadn't occurred to me we'd need to do this, because of course it'd mean tapering off the topa and dealing with that withdrawal, and then titrating up the lamictal again, and of course that limbo in between where you're not really on enough of anything to be feeling well...just the thought of it exhausts me. although the possibility of being able to go on lamictal again would be great - but the dermatologist seems to think that if lamictal wasn't causing the bumps, then lymphoma was, which is even worse - so really, either way sucks, but lymphoma sucks worse. *sigh*

so that's my update. thanks for the support, i'm still hanging in there. btw, i felt some immediate relief with the lamictal in terms of stabilization, but didn't feel full effect with mood elevation and all until 150 mg. then it was just like a freakin' miracle. so i hope for both of you that you have the kind of response to it that i did, cause i loved my lamictal.

bean

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That's what I was thinking. About the baby dose.

I'd just make sure I gave the topamax a fair shot before tapering off and trying lamictal again. If eventually you find it's not the right drug for you, then by all means ask about trying the lamictal again. You never know, you may not have a reaction the second go round. Meds are weird that way.

How come the doctor said if it wasn't the lamictal rash it was lymphoma? It seems to me that would be something that would have been checked out? Or did I misunderstand?

Croix

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The skin issue may change. When I first mixed topa and lamictal, I had SUCH a rash on my lower legs that my doc ended up scraping stuff off my feet and even doing a little biopsy on my calf. Results were negative, and I ended up dropping the topa cuz I was losing my insurance and switching to lithium. After getting insurance again and getting back on topa (and at a higher dose of lamictal even) I haven't had but maybe some left-over acne from the lith. No rashes whatsoever.

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the skin thing's a little complicated, i'll try to put it in a nutshell. i didn't have a rash, exactly. the first thing i developed was a little bump on my neck. after it didn't go away for about 6-7 weeks, the dermatologist did a core biopsy, and the lab couldn't figure out what it was. for about three weeks they kept calling my doc and saying they were doing "a few more stains" and "a few further studies." they finally sent back a vague report saying there was a lot of inflammation and t-cell infiltration, which could (but probably didn't) indicate lymphoma. but they also said lamictal can cause "pseudolymphoma." i never got a good explanation of this and could never find any info about it online.

after the bump developed, i was also getting pink spots on my arms, chest, and abdomen, and some rashy patches on my chest and abdomen, but definitely not SJS. this was only after i'd titrated up to 150 mg, so i don't think going back on just a tiny dose of lamictal would give us the answer whether the lamictal was causing it or not, unfortunately.

when the vague report came back from the lab, the dermatologist was concerned enough that she decided to biopsy the rest of the bump that still remained on my neck; a pink spot from my chest; and a new spot on my lower leg that looked like a sore that wouldn't heal. the results were, neck and chest - inflammation, t-cell infiltration, and edema; leg spot - dermatitis.

the dermatologist said she was relatively certain it wasn't lymphoma, but the t-cell infiltration was concerning enough to her that she wanted to try to rule it out, so i started tapering off the lamictal. almost as soon as i went down to 100 mg all the pink spots, bumps and rashy patches started going away, and now they're all gone. but she wants to be certain, which is understandable. so i'll talk to my pdoc about reintroducing the lamictal at some point, but if i can get stable on the topa, i'm not gonna be in any big hurry to make another switch anytime soon.

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btw, you're probably wondering, like i did, isn't there one test we can do to know for sure if it is or isn't lymphoma? the dermatologist's answer was no - it's a matter of whether or not it keeps coming back, and how it behaves when it does. which, as you can imagine, is pretty nerve-wracking.

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btw, you're probably wondering, like i did, isn't there one test we can do to know for sure if it is or isn't lymphoma? the dermatologist's answer was no - it's a matter of whether or not it keeps coming back, and how it behaves when it does. which, as you can imagine, is pretty nerve-wracking.

If it wasn't caused by the lamictal, wouldn't it, at some point, come back without the lamictal?

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If it wasn't caused by the lamictal, wouldn't it, at some point, come back without the lamictal?

that's the thinking, which is why i have to stay off the lamictal for a while and see what happens. for now, i've only been off the lamictal altogether since december 15th (even though it seems like forever).

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And I was thinking, if it was the lamictal at 150mg, couldn't you go back on a lower dose? That's what I meant to say. Assuming a little lower dose would stabilize you?

unfortunately no. as i said above, the dermatologist wants me to be off the lamictal completely for a while. that way, if the bumps, etc, come back, she'll know that something other than the lamictal is causing them.

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