Aptiom

Plasticmask

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Did a search, didn't see anything new on this topic so wanted to ask the Group:
To anyone on the drug, does it make your stomach hurt? I'm asking because after my neuros took me off of Keppra they are trying those giant aspirin on me and all that they seem to do for me is depress the hell out of me and MAKE MY STOMACH HURT.
Thanks
 

Bernard

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My wife takes Aptiom. She has never complained about stomach pain. But everyone tolerates drugs differently. Maybe take them on a full stomach?
 

Plasticmask

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I would if I could eat. But at first the pain was mild so I didn't give it much thought; could eat fine. Now it's unbearable and I can't eat at all. Faxed them about it but won't know anything until Monday. Thanks for the response though!
 

Porkette

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Hi Plasticmask,

From what I have studied Aptiom can cause bad stomach pain, and gastrolinteneritis which is very painful I had it once
before do to the mysoline I've been taking for yrs. What I don't like about the drug is that it can increase seizures sometimes.
You may want to call your Dr. and tell them what's going on and also ask your Pharmacist about the drug because I've
found that my pharmacist often knows more about the meds I take more than my Dr. I hope you feel better soon.
Wishing You only the Best and May God Bless You,

Sue
 

BIGMAN131307

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Here is the AED's website: https://www.aptiom.com/

From what it shows it can be taken many ways.

With or without food
Whole or smashed

Perhaps your Neurologist & Pharmacist can suggest which method would be best for you.
 

Plasticmask

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Here is the AED's website: https://www.aptiom.com/

From what it shows it can be taken many ways.

With or without food
Whole or smashed

Perhaps your Neurologist & Pharmacist can suggest which method would be best for you.
Thanks but I was asking if anyone who is taking the drug experiences stomach pain. Other than that, I don't want to bother anyone. Thanks again.
 

Plasticmask

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It occurred to me that that last posting seems a little too cranky and borderline RUDE, and I want to apologize, Sir. I'm in some pain, and quite undernourished and haven't had much sleep. I sincerely DO appreciate that you responded, and want to I thank you for the trouble in researching it like you did, truly. It's just that I want to "hear" from people who are actually taking this wretched drug. Honestly: I'm sorry if I came off like a horse's ass. I did NOT mean to.
 

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Don't worry you're not bothering anyone. When you ask a question it isn't bothering bothering people, it's trying to find an answer. You may have to ask more or to give more answers to your initial question so people can help understand it more. And everyone can get a little cranky sometimes.

We're here to help and I know it's frustrating when no one can really give an answer because they've never been on the med or maybe never even heard of it, like me for instance. We may try to look up things on the internet to see if we can find answers for you, like the Aptiom website, but it looks like you've already looked that over to see if you can find an answer and you haven't.

It does seem like your best way to go is to ask your neurologist and/or pharmacist about it. They actually deal with the people face to face who are put on that med so they might know more about the side effects that others could have.
 

Plasticmask

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Don't worry you're not bothering anyone. When you ask a question it isn't bothering bothering people, it's trying to find an answer. You may have to ask more or to give more answers to your initial question so people can help understand it more. And everyone can get a little cranky sometimes.

We're here to help and I know it's frustrating when no one can really give an answer because they've never been on the med or maybe never even heard of it, like me for instance. We may try to look up things on the internet to see if we can find answers for you, like the Aptiom website, but it looks like you've already looked that over to see if you can find an answer and you haven't.

It does seem like your best way to go is to ask your neurologist and/or pharmacist about it. They actually deal with the people face to face who are put on that med so they might know more about the side effects that others could have.
Thank you, it's BIGMAN I'm concerned about whom I may have ticked off, when he was trying to be so helpful. I feel terrible about that.
And I did fax my neuro team about it; they just haven't gotten back to me as of yet. Meanwhile, I'm starving. So as well as the other thing that's killing me it's going to be starvation that takes me first lol. Perhaps THAT is what I need to research. What it's like to starve to death. Maybe that won't be as bad as dying from the holes in my brain growing to the point of forgetting how to breathe. Should surely be faster, at least. :)
 

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I wouldn't consider that rude if you said that to me. Like I said people can try to give you some info about he med, like the website for example, to see if you can find an answer but that's all they can do.

Can you email your neuro? I'm able to and I usually get an answer within two days. When I would call it may have taken a week, or even never, to get an answer.
 

Plasticmask

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I wouldn't consider that rude if you said that to me. Like I said people can try to give you some info about he med, like the website for example, to see if you can find an answer but that's all they can do.

Can you email your neuro? I'm able to and I usually get an answer within two days. When I would call it may have taken a week, or even never, to get an answer.
No, they don't do email, and calling them just gets me their manager who -well, I won't badmouth anyone. But the short answer is that I have to fax them.
 

valeriedl

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Before my nuro had email all I could do was call. I would get the receptionist in the office and leave a message. I got so frustrated one time because it'd been a few days without an answer so I started calling the office every half hour when it opened and left a message. It did take almost all day but I finally did get a call back!
 

Plasticmask

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Before my nuro had email all I could do was call. I would get the receptionist in the office and leave a message. I got so frustrated one time because it'd been a few days without an answer so I started calling the office every half hour when it opened and left a message. It did take almost all day but I finally did get a call back!
Their manager has this thing about being 'pestered' by patients; I don't want to lose that team. They're the only people who gave me hope when nobody else did. That's if you call a handful of years, hope. I did. Now that I'm down to less than that, I'm getting more bitter than I expected to become but the therapist says that just makes me 'normal'. Pff. ANYWAY. Now I'm just trying to leave this rotting place with people remembering me as a nicer person than I truly am. It's all that I have left. Hope that that makes sense. WOW are we off-topic, lol.
 

BIGMAN131307

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Thanks but I was asking if anyone who is taking the drug experiences stomach pain. Other than that, I don't want to bother anyone. Thanks again.
Although I do not have personal experience taking this particular drug, I've taken others that have caused this pain. Which caused me to lose 50-60lbs while on them because of pains. I ended up needing to have my Gall Bladder removed, and dealing with Ulcerative Colitis & IBS for
the past 13+ years.


FWIW: Because everyone is different, each medication can react differently. That's why I noted the different ways you can take this medication according to Aptiom. Just check with your Neurologist &/or Pharmacist fist to see if this may cause any interaction with other Meds your taking.
 

Plasticmask

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So I called, told them that I wanted to be taken off of the Aptiom because I quite frankly think that it's killing me.
I was told that they'd "message the Doctor and would get back to me".
Didn't happen.
Maybe tomorrow. The Wife is going to call them tomorrow, she HEARS and can possibly get faster and more clear results than I am able to get with my captioned desk phone. Cross your fingers. Still not able to eat.
 

Plasticmask

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Good news: The HEAD Doctor called, which he has NEVER done before, and talked to my Wife since I don't hear to make certain that no details were missed nor misunderstood. Once he had everything as clear as crystal, he said that I'm now to take one-half pill for a week and then stop taking the cursed things, at which point they're starting me on something called Vimpat. So I'll still be taking four AEDs per day that barely keep me standing but at least I don't have to be in a (expletive deleted) wheelchair or anything for the time being. Thank goodness for canes (I have quite an admirable collection of them; they're all actually fighting sticks or sword canes but they surely do keep me on my feet lol)
Anyway, the Aptiom Soap Opera is nearly over. I appreciate everyone who put up with me and my drama whilst it was going on. The Keppra was worse; I'd have gotten thrown off of the Forum, I'm certain of THAT. Can't wait until I can eat again. I miss my Spaghettios. haha! Thanks again, everyone. :)
 

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Hi Plasticmask,

I've been on Vimpat many yrs. and I will tell you that in the beginning you may notice a rapid heartbeat when you aren't doing
anything, this is a side effect of the drug but it will stop. I found that if the dosage was to high for me at 400 mg. a day I had more
seizure but when my Dr. cut me back to 300 mg. a day my complex partial seizures pretty much stopped. I might have about 3 a yr.
compared to 12-15 a yr. before taking vimpat. Stay away from grapefruit and do not take aspirin or Alka Seltzer cold plus that will
mess things up good. If you should need an antibiotic for some reason be sure to let your Dr. know that you are on vimpat because
a few antibiotics can make the drug become toxic. When I get a cold I take the Aleve cold and sinus that works the best for me
with the least side effects.
Wishing You only the Best and May God Bless You,

Sue
 

Plasticmask

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ADDENDUM: We'd mentioned to the Doctor yesterday that I'd sought advice on a Forum regarding the Aptiom and what I was told. Had her put me on the phone.
He asked me what I had discussed, what I was told, and he became **extremely** angry. He scolded me QUITE thoroughly, telling me NEVER to do that again, and that if I DID that again that I'd be unceremoniously told to seek another team.
Gave me the speech about how we are all different, he told me that nobody else knows my record and he made certain that nobody else knows what else I'm taking, he told me that *nobody* else knows how what I'm taking affects me, on and on. It actually quite shocked me; I'd never known him to be angry with me.
I had to promise him that I'd never discuss my Rx's with anyone on a Forum EVER again, and that took some doing believe me.
Now when I go in for my regular CT to see how big the holes in my brain are becoming, I had to agree to a blood test to assure him that I'm not smoking dope or taking anything else that's illegal or "alternative" (which translates as illegal most of the time in Texas) nor anything else that goes against what he has Rx'd for my treatment.
I told him no problem THERE, do the hair test instead; I haven't been able to get to a barber in over four years so he can see very plainly that I've been clean other than for what I've been prescribed, for at least that long. I don't even DRINK BOOZE. Haven't since 2002. So I am reasonably confident that I calmed him down, difficult to tell when all one has are the words on the screen of a captioned phone to go by. He seriously scared me. I NEED THIS TEAM.
He told me (once he'd seemed to have calmed down) that all that asking people who aren't MD's is going to do, is scare me into thinking that things are going to happen to me that probably are NOT going to happen to me, and that I NEED TO TRUST MY NEURO TEAM OR BASICALLY GET THE HELL OUT AND FIND ANOTHER OFFICE SOMEPLACE THAT WILL ACCEPT ME.
It took us the better part of four years, I think, once I was FINALLY diagnosed with the bacterium and it was treated, to find someone who would risk their licenses to treat a dying man. I'm not going to risk losing that. I can NOT risk that.
So, this whole thread I started regarding the Aptiom was a HUGE mistake on my part. I like you guys, A LOT, but I can't discuss my Rx's with you.
I just can't.
I hope that you understand that I wish that I'd never brought it up to begin with.
 
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