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Topamax: First night & already miserable


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I've read all that crazymeds has to say about Dopamax. I went to my new (female) pdoc and asked to be taken off lithium and put on something weight-neutral to help my diabetes. Also I have severe insomnnia that is not mania related.  I asked for either Tegretol or Trileptal. She won't take me off my 600 lithium because she practically yells at me that I'm "stable." She tries really hard to add Seroquel. I tell her it gives me bad a.m. headaches in my eyes and then she finally looks at me like I'm crazy. She added 25 Topamax and I agreed to try it for the weight loss potential.

It's 3 am, 4th hour on Stupamax and my mind is racing as fast as my heart. I considered going to the ER because of how I feel, like I'm hallucinating Does it ever get any better? I'm forced to dig into my small and precious stash of Lunesta to get some sleep.

This pdoc gave me a pamphlet saying that she works part time and is a sole practitioner and that if I need extra care I should go to a larger clinic instead. She was the last pdoc in my town who would accept Medicare. Should I take this dreaded Awake-amax again tomorrow night? I know it takes 4 days to see the full effect.

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It's 3 am, 4th hour on Stupamax and my mind is racing as fast as my heart. I considered going to the ER because of how I feel, like I'm hallucinating Does it ever get any better? I'm forced to dig into my small and precious stash of Lunesta to get some sleep.

Are you sure it's the Topa doing that?  Sounds like plain vanilla (hypo)manic symptoms.

Should I take this dreaded Awake-amax again tomorrow night? I know it takes 4 days to see the full effect.

4 days?  Says who?  YMMV.  Took me 3.  Also, "full effect" is dosage-dependent.  When I say "took me 3", I was at 50.

And it knocked me the hell out, till I was at 400 for a while.

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Jerod said that it works in four days over at the crazymeds site.
YMMV, YMMV, yer bloody mileage always, ALWAYS varies.  See, MY heart never raced, nor did Topa make me feel like crap.  And I did not expect it to hurry up and work--I trusted my doc's titration schedule, much like I trust an antibiotic scrip.  Things work in their own time.

Why am I taking Topamax along with Lithium for bipolar, anyway?

Why am I on Topa, lith, AND Lamictal for bp?  Well, cuz I'm trying to keep my moods stable.  While Topa and Lamictal did the job A-OK, the Topa cost too much, so we switched to lith and kept a low dose of Topa for the anti-craving effect.

HOWEVER--according to aidsmeds.com, AND my own experience, doses of Topa over 200 mg + lith (amount varies, but hey, lith is like that) can lead to symptoms of lithium toxicity.  Just FYI if you go high on the Topa and are still on the lith.

Also, it's not killing my appetite at all yet, nor changing the taste of soda or food. I guess I need to give it more time...

YES you need to give it more damn time!  This is NOT an overnight thing!  Whether or not you feel the positive effects in four or whatever days, with Topa, the side effects, they come and go varying on the dosage and your particukar, well, makeup.  And that's IF you get any of those effects.  See, I got the appetite thing for awhile, but never the taste thing.  People don't always get the appetite suppression.

YMMV.  Worry about whether or not the damn pills will control the manic symptoms.  Forget about the side effects, wanted or unwanted.  Find a dose that works, if it works at ALL.  You MAY notice something at your baby dose, but it takes time--likely a LOT of time--and trial & error to find out where you need to be.

Patience.  It is a virtue.

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Thanks, Kassiane, for explaining the off-label use thing. And thanks, CrazyNotStupid, for the reminders about patience. I still don't wanna believe that my pdoc is intentionally ignoring my primary care physician's advice to get me off the damn lithium because the weight gain IS MAKING MY DIABETES BAD. It's like she doesn't care about the diabetes. My body is supposed to suffer so that my moods can be stable?

You seem to be saying that she mostly added Topomax because I needed an adjunct mood stabilizer. And yet she said that I'm "obviously stable on lithium." I have not had a manic episode in 6 years, just a little hypomania. She said she was giving me Topomax to lose weight. Do you think this was a little white lie, maybe?

??? Thanks! ;)

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You seem to be saying that she mostly added Topomax because I needed an adjunct mood stabilizer. And yet she said that I'm "obviously stable on lithium." I have not had a manic episode in 6 years, just a little hypomania. She said she was giving me Topomax to lose weight. Do you think this was a little white lie, maybe?

??? Thanks! ;)

<{POST_SNAPBACK}>

It could be a little white lie, or it could be that she doesnt want to start taking you down off the lithium till you're at a dose thats actually working of something else.

Like, let's say I was going to reduce my Topamax because of the Keppra addition (something I actually did, I was at 500mg Topamax, weighed in at about 90 pounds and got dumb suddenly, it wasnt pretty). We didnt start reducing my Topamax the day I started Keppra at 250mg, we waited till I was at 500...then reduced slowly, then, oh crap, breakthrough stuff at 500mg keppra 250mg Topamax, what will fix them? Add 250 more Keppra...ok...that solved most of it...add 25mg Topamax and 300mg Neurontin back in....tada. Fixed (neurontin detitration was coming with the Topamax, they have a really specific balance for me).

Make sense?

Kassiane

<{POST_SNAPBACK}>

I'm never sure how to do this "posting" seems like I'm always in the wrong place or something.  I've been put on topamax for "daily migraine" that have persisted for over 20 years with little or no relief.  After first 25 mg dose, sodas tasted like ass, and some foods, tonight, it was fish, and I thought I was going to die, it was awful!  I'm up to 50 mg, (25 twice a day) and I feel achy all over and like shit, and I can't say I feel any relief with my head.  I'm just frustrated and don't know what to do or where to turn.  Also, if I decide to stop taking it, how do I come off of it?

You people are great and insightful, thanks for the info!

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It could be a little white lie, or it could be that she doesnt want to start taking you down off the lithium till you're at a dose thats actually working of something else.

Kassiane, as usual you make a lot of sense! My update is that I took it for 3 nights in a row, had a racing heart (I have a heart problem anyway, but this made it worse) and I WAS AWAKE FOR ALL OF THOSE THREE NIGHTS. It was not manic keeping me up, it was the Topamax acting paradoxically!

I decided to go with my pharmacist's advice and get off it if it keeps me awake. I have to, because this new doctor apparently doesn't return calls at all. (sigh) Back to the drawing board. I guess I stay on lithium and stay fat!

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My update is that I took it for 3 nights in a row, had a racing heart (I have a heart problem anyway, but this made it worse) and I WAS AWAKE FOR ALL OF THOSE THREE NIGHTS. It was not manic keeping me up, it was the Topamax acting paradoxically !

I decided to go with my pharmacist's advice and get off it if it keeps me awake. I have to, because this new doctor apparently doesn't return calls at all. (sigh) Back to the drawing board. I guess I stay on lithium and stay fat!

Not necessarily paradoxical... throwing a new chemical at your body, especially with a bunch of others, can do weird things.  Completely aside from the usual "AC drowsiness".  Hell, I'm on lith and 2 AC's, and I get by just fine--like I'm on no meds at all.  Why, I'm even up nights!  (says the guy posting at 5:30 a.m....)

BUT...didn't you ever consider taking it the...morning?  Seriously, if you take it at bedtime and it keeps you up...then try the morning.  It's what *most* of us do.

I don't know about the tachycardia, but the whole sleep bit was eminently dealable.

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I never thought of taking it in the morning.

But the whole reason I was prescribed it was for (I was told) to lose weight. I feel that may happen because it makes sodas and food taste funny. I'd rather not lose weight that way!

I already take 15 pills for physical problems, and just found out I have acute pancreatitis from high lipids/diabetes. Unless she tells me I need it for mood stablizing properties (which I don't), then I've had it with this med. Thanks for helping with all the input. I appreciate it.

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I never thought of taking it in the morning.

But the whole reason I was prescribed it was for (I was told) to lose weight. I feel that may happen because it makes sodas and food taste funny. I'd rather not lose weight that way!

I already take 15 pills for physical problems, and just found out I have acute pancreatitis from high lipids/diabetes. Unless she tells me I need it for mood stablizing properties (which I don't), then I've had it with this med. Thanks for helping with all the input. I appreciate it.

<{POST_SNAPBACK}>

Topamax has actually been shown to improve glycemic control and relieve diabetic neuropathy. Here it was found to increase insulin sensitivity in the fat cells (but not muscle cells) of a type of rat called, "Zucker diabetic fatty." I think that means they were bred to develop the rat equivalent of Type II diabetes. Here is the fulltext version of that, if you want. If it weren't for the cognitive side effects in people whose brains weren't messed up just so, then I'd like it as much for diabetes as the researchers do.

Something tells me the glycemic control isn't just sodas tasting like ass; the MedlinePlus mentions it causing hypoglycemia...oh well, lookee here:

Topiramate can cause hypoglycemia (low blood sugar), especially in children. If you have any of these symptoms, eat or drink a food or beverage with sugar in it, such as hard candy or fruit juice, and call your doctor immediately. Symptoms of low blood sugar include:

shakiness

dizziness

rapid heartbeat

sweating or confusion

blurred vision

headache

numbness or tingling of the mouth

weakness

fatigue

pale color

sudden hunger

Maybe you should take this during the day--when you can eat.

Edited to add: It now occurs to me that you might have more personal experience with that than I do, and that you never mentioned any similarity to the feeling of low blood sugar.

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Guest FrannyNZooey

It could be a little white lie, or it could be that she doesnt want to start taking you down off the lithium till you're at a dose thats actually working of something else.

Kassiane, as usual you make a lot of sense! My update is that I took it for 3 nights in a row, had a racing heart (I have a heart problem anyway, but this made it worse) and I WAS AWAKE FOR ALL OF THOSE THREE NIGHTS. It was not manic keeping me up, it was the Topamax acting paradoxically!

I decided to go with my pharmacist's advice and get off it if it keeps me awake. I have to, because this new doctor apparently doesn't return calls at all. (sigh) Back to the drawing board. I guess I stay on lithium and stay fat!

<{POST_SNAPBACK}>

I think you did what is right.

It made you feel right, and that is what it is all about.

I had posted I believe just yesterday, my terrible effects on Topomax which did at 25mg for just barely week.

That was as long as my body could take. got to do what is right for us, no one else's body, chemistry is ever exactly the same.

I am happy with my decision, I hope you are with your's.

Please don't go second guessing yourself, sometimes it just is what it is.

Aly

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Another doc vs. patient story from me (i'm both).

I tell people every day that the side effects show up in the first two weeks and if they're tolerable, wait out the two weeks to see if they go away.  I also tell them that the therapeutic effects take three to six weeks to kick in, so be patient.

I took seven doses of Topamax (topiramate), 25mg daily, and stopped dead because of nightmares.  I took four doses of Zyprexa (olanzepine), 2.5mg daily, and ran away screaming because it made me feel extremely drunk.

I took two doses of Lamictal (lamotrigine) 25mg daily and slept like a log, no nightmares, and 7 weeks later on 100mg, no side effects (except I shouldn't drive after taking it).

YMMV, YMMV, YMM f***ing V.

I won't forget this when talking about meds to patients.

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Well, that's great if it helps with diabetes and neuropathy - we can always use that - although my racing heart from the Topamax was not from low blood sugar. I have heart damage from overdosing on Trazadone, a year and a half ago. I was on a respirator and they said I nearly died. Ever since, my heart beats at 115-120 and they say there's nothing they can do. I take a beta blocker to slow it down to 105. So it *was* a Topamax side effect, I'm sure.

If it helps with irritability, I'll try it again. My doctor is off for the next three days and I woke with terrible irritability today. But then I also have acute pancreatitis right now, so who wouldn't feel irritable when they sick of being homebound and sick of feeling like crap?

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Well, that's great if it helps with diabetes and neuropathy - we can always use that - although my racing heart from the Topamax was not from low blood sugar.

<{POST_SNAPBACK}>

I kind of guessed based on the fact that a) you'd know what that feels like and B) you didn't say it felt like that. By guessed, I mean, "within seconds of hitting submit."

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