Topamax experience from hell (lost from last night)

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Hi,

I posted my current dilemma last night which was lost with the server transfer so I wanted to repost since I feel like I am going insane from this drug. I have been on Topamax for two years. I started feeling hte cognitive side effects immediately. Basically was unable to get out what I was thinking, read that it was temporary, body would adjust, never did....eventually got worst, started feeling like my mind was congested. Got even worse, lost my job, insurance. Was therefore stuck on Topamax because my neuro (topa-pimp) would give me samples and got me on the patient assistance program. She insisted that she never heard of these cognitive side effects even when I would tell her that I had seen them posted all over the internet. I asked her numerous times to take me off and put me on another. Since i was insurance-less, I needed her assistance in getting me on another patient-assistance program. She gave me Exelon (what they give to people with Alzheimer's/dimentia). Finally just told her to write me a script for Keppra and am charging it on my credit card. The decay of my mind is so bad now that I feel like I am going insane. I am decreasing the Topamax 25 mg every 5 days and won't be completely off for almost 2 months. Questions: how long does it take to get out of your system? After I take last pill. I read somewhere that 20% of Topamax users experience the cognitive side effects. Some have said they feel like getting off TM was like coming out of fog, some have said they never recovered. I am scared I will not ever get my mind back. Anybody who has experienced this and has anything to add, please help. I can't remember things...recent things, names, places, friends. If I could I would stop cold turkey but I am scared of the consequences. Scared all over, don't know where to go or turn and the fact that I have no insurance doesn't make it easier. I just want to feel like I will one day be back to my old self.
 

brain

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Hi ya Topamax,

I've not forgotten you, I would
very much would like for you to
PM me to tell me what City and
County (no address please) of
where you are so I may provide
you some names of Neurologists
and Epileptologists in your area
that may be of assistance - since
you made mention of you being in
the Tampa Bay Region. Tampa Bay
Region is a very BIG Region.

I'm concerned and I could be of
assistance - just click on my ID
and click on send me a Private Message
(aka PM). And I will respond.

Thanks so much and sorry you're having
to undergo what you're going through!
 
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Thank you Brain,

I tried sending you a PM but I got this "brain has chosen not to receive private messages or may not be allowed to receive private messages. Therefore you may not send your message to him/her." Anything you can do is immensely appreciated. I cold called a few neurologists in the area and all wanted cash, none took credit cards. That's when I called my neuro in LA frantic and she called me the Keppra prescription long distance told me how to wean off the TM but I really need to see someone out here,
 
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brain

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I have sent you a PM, and I have
fixed my settings so anyone should be able to
PM me now.

I edited your post to remove your location for privacy.
 
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Bernard

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Thanks for reposting TBD. Last night shall live in CWE infamy. :mad:

I'm pretty sure that Topamax was the drug Stacy tried for about 2 weeks before reaching the "hell no" point. She seriously could not tolerate that drug.
 

brain

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Topamax received the list they needed
from me via PM ... so they'll be busy!

:lol:

:D
 

Bernard

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I don't know what kind of seizures you are having, but you might ask your doc about switching you to Dilantin. It's one of the oldest seizure drugs around (the patent has long expired so it's relatively cheap now) and generally well tolerated as long as you don't go toxic on it.
 
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I was actually on Dilantin for 16 years and it worked great. The only side effect I experienced was the swollen gums. But then it stopped working. My doctor couldn't get a level on me so she had to up the dosage and I would suddenly start shaking if I exerted myself and then my gums started bleeding and I started having dental problems. That's the reason I switched to the Dopamax. I wish I could go back to dilantin, my quality of life was so much better.

I am on Keppra now and weaning off the TM. I read that some people have had these rages on Keppra but I also read that B6 has decreased side effects in Keppra so I am taking that and hoping and praying that I have paid my dues w/ the Topamax and Keppra will be kind to me. The first couple of days on Keppra I felt very groggy and I kept grinding my teeth, then it wore off and I have been okay. The topamax gave me insomnia and I notice since I started the Keppra I sleep okay.

Thank you for your support and feedback.
 

Bernard

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Aha! Well, my instincts were good, but my timing was waaayyyyy off. :D

The internet is such a miracle for empowering people to learn more about health issues and drugs. Sounds like you have a pretty good handle on what you are doing. :clap:
 
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Still weaning...

Here's an update on the weaning process. I am now at 175mg. With every decrease in dosage, I have a new side effect like ringing in my ears and super sensitive sense of smell but I do feel a little sharper. Prior to the weaning, I was really unable to communicate I was so mentally dulled by this med. Memory is still really bad, especially short term.

I went to epilepsy foundation for help and they are screening me, it will take five weeks and then I go back. I did go to a support group and told my story. Somebody there extended his hand and said "welcome to topamax club, you're me five years ago". I got info on county insurance which I am going to apply for next week.

Thanks for all your support last week. This is what I call a support forum!
 

angel

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I was actually on Dilantin for 16 years and it worked great. The only side effect I experienced was the swollen gums. But then it stopped working. My doctor couldn't get a level on me so she had to up the dosage and I would suddenly start shaking if I exerted myself and then my gums started bleeding and I started having dental problems. That's the reason I switched to the Dopamax. I wish I could go back to dilantin, my quality of life was so much better.

I am on Keppra now and weaning off the TM. I read that some people have had these rages on Keppra but I also read that B6 has decreased side effects in Keppra so I am taking that and hoping and praying that I have paid my dues w/ the Topamax and Keppra will be kind to me. The first couple of days on Keppra I felt very groggy and I kept grinding my teeth, then it wore off and I have been okay. The topamax gave me insomnia and I notice since I started the Keppra I sleep okay.

Thank you for your support and feedback.
I think keppra will work for you:) the reason im having alot of side effects from meds is because I also have Vesicoureteral reflux (VUR) Urine normally flows in one direction -- down from the kidneys, through tubes called ureters, to the bladder. Vesicoureteral reflux (VUR) is the abnormal flow of urine from the bladder back into the ureters. which goes back into the kidneys. SO Im pretty sure my side effect are from having toxic reactions from to much meds in my system.. I cant go to my urologist and neuro at the same time cost to much money. :)

everyone is different on each med. SO dont let yourself be all freaked out by reading others reactions you may not even have any:) I'm afraid my doctor is going to try and put me on topamax next thats why I want to stop the meds right now! I have alot of health problems with my kidneys... it messes with the e meds....

just remember to eat and take the vit b6 it does help the tiredness will go away
Love angel

Love angel
 
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My son is on 800 mg of Topamax along with 1000mg of Lyrica and 1000mg of Depakote ER. He has a lot of problems with verbal expression saying what he wants to say. It's on the tip of his tongue but takes him a minute to get it out. He also has problems with processing info. in school. He has been given accomadations to help him out but the lectures and notes are a big issue. Next Semester he hopes to find someone scribe the notes for him. I am trying to convince him to use a taperecorder for the lectures so he can replay and listen to them again at home.
Marian
 

angel

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My son is on 800 mg of Topamax along with 1000mg of Lyrica and 1000mg of Depakote ER. He has a lot of problems with verbal expression saying what he wants to say. It's on the tip of his tongue but takes him a minute to get it out. He also has problems with processing info. in school. He has been given accomadations to help him out but the lectures and notes are a big issue. Next Semester he hopes to find someone scribe the notes for him. I am trying to convince him to use a taperecorder for the lectures so he can replay and listen to them again at home.
Marian
it would be so hard to be young and on these meds I can only imagine how he must feel. I watch my kids alot ive noticed my son youngest having some problems ..... hoping its not E Im going to be making him an appointment with his doctor he needs his check up anyways. he has slight cerebral palsy ... I pray none of my children have to suffer with e.

Love angel
 
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Angel,
I know how my husband and I feel , I can't imagine how tough this must be for our son at one of the best years in his life to have to deal with all of it. He has no signs of his seizures coming on as the majority of them are nocturnal.Dating can be tough because of the driving. He has dated girls who don't mind and they will do all of the driving. Depending on others isn't what he likes to do, but he's trying to make the best of it.
Marian
 

oclare1

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topamax 2003

I was on topamax for approximately 3 months in 2003. After going into status my son dialed 911 next thing I remember I was tied down thought I was being electrocuted. I was in the hospital for 3 weeks with aspiration pneumonia. I have all my medical records. That was definitely one of the worst medicines I've ever experienced. I have been on them all, I was toxic with depakote went into renal failure. I am now on 3000 mg keppra xr. I have deceided to stop all drugs. I have a VNS and had a right temporal lobectomy. I am no longer playing the guinea pig. The side effects of these medications leave you with unacceptable quality of life. While you sit there hallucinating your doctor informs you that is not one of the side effects. I'm sorry for saying so much but much has happened. I am literally starting my life over.
 
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