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Topamax users...HELP I'm on neurontin and sick!

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Old 03-25-2005, 12:14 PM   #1
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ladybird988 HB Userladybird988 HB User
Topamax users...HELP I'm on neurontin and sick!

Some of you who use Topamax, I need help.

I have been on Neurontin now for 15 days and I have the worst side effects. I can't hardly think, have become like a vegetable

No energy
Can't think
Off balance
Dizzy sometimes
Hand tremors occasionally
Eating and can't stop
constant Headaches
Become like a zombie and have no desire to do anything
Mostly my head hurts and I can't thinkhard to form words hard to remember things.

I'm desperate. I run out of the neurontin in two days and called in the pharmacy to fax the doctor for a small refill so I don't run out as I read you can't quit cold turkey or you'll have serious problems, like seizures.and even die.

I have a call in to the doctor to talk to him about this med and see if I stay on it or try something else. I had heard that it takes at least 3 weeks for side effects to lessen. Mine haven't yet. I'm at 2 weeks.

I don't know if I should stay on it another week and endure to see if these go away, or forget the drug altogether and go off????????

I turned 40 yesterday and had to cancel the dinner and lay on the couch because I could hardly lift my head off the pillow. I didn't even know it was St Patricks Day at all. I am unaware of the world aroudn me.

This isn't working. It has taken away 90% of my leg/foot pain though, and I CANNOT go back to that! It had reached a level 10 and was hitting more often, leaving me screaming (nerve damage) and exhausted.

I now read that going off neurontin can cause seizures etc so I'm terrified now of going off.

Can anyone help me out with information while I wait to hear back from the doctor???????? I'm working myself into a frenzy of terror, and can't think straight to begin with. I dnt even know if I can talk to the doctor as I can't think stragiht!

Do all meds for controlling nerve pain cause these symptoms? Is Topamax better? The doctor didn't want me on Topamax to begin with because he said it had MORE side effects! So I'm terrified of trying it, if the Neurontin is THIS BAD!

I'm just desperate. I can't live with the pain and I can't live with the med. I'm afraid of permanent brain damage too.

I"m hyperventilating. Can someone please respond soon!!


Is there any hope?????????? Did anyone go off gradually and do fine??? Did anything else work to hold off the pain and not make you sick??????

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Old 03-25-2005, 12:27 PM   #2
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myspine HB User
Re: Topamax users...HELP I'm on neurontin and sick!

Hi there
First calm down You really have to be on a high dose for a while to CAUSE a seizure, so do not panic. I am taking Topamax, I could not take Neurontin, I could not function on it. I have 3 kids a full time job and have to be up at 5 am to get the day started to be out the door at 6:50
Not the same side effects with Topamax, but it does cause you to have some nausea for the first couple weeks while you are getting use to it, but that is about it. No sleepiness, or foggy feeling and NO WEIGHT GAIN!!!!!!!!!
So just talk to your doc and see. It will be o.k. just take a deep breath.

Old 03-25-2005, 12:41 PM   #3
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ladybird988 HB Userladybird988 HB User
Re: Topamax users...HELP I'm on neurontin and sick!

Thanks, I was hoping you would reply, as I'd heard from you before.

I posted to some others to help them to get my mind off me.

I am on 400 mg tablets 3x a day. So 1200 mg a day. it really zings me out.

You had no ot her symptoms other than nausea on Topama? And it went away?

What were your symptoms on neurontin?

Thanks, I just need to calm scared. This drug has me totally out of it. I wish I'd n ever taken it. I'm scared of having a seizure as my hand tremlbed with tremors last night after I'd taken a pill and I got so dizzy. I think I need to get off this. I don't think my body can handle it. Some others can, but i don't think I can. I think I'm tryin gto be too strong. Maybe waiting it out is not wise.

Old 03-25-2005, 01:07 PM   #4
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Madonna HB User
Re: Topamax users...HELP I'm on neurontin and sick!

Quit taking it and call your doctor. My mother took it and said her mind was digressing. My husbands neursurgeon tried to get him to take it and I would not allow it. The drug has a class action law suit against it. Do a search on the internet to find out all the horrible details.

Old 03-25-2005, 02:43 PM   #5
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myspine HB User
Re: Topamax users...HELP I'm on neurontin and sick!

I had a whole post written and it vanished . Anyway another side effect was kind of a tingle feeling in the fingers every now and then, but that was only when my dosage was increased. Lets see, when I first started it , my diet coke tasted horrid, but that went away. the nausea was pretty yucky but after sticking with it , it did go away. It was not enough to make me miss work or quit taking the med. The neurontin made me very loopy, tired and eat all the time which I said before I did NOT need not after losing the weight I needed to. At first the Topamax made me alittle sleepy at night when I took it and i had to gradually increase it, but never day time sleepiness and I never had fogginess feeling and all the sensations I had on neurontin. the other day my new RX was for 100 mg take 1-2 at night so I tried 2 uh-oh the YUCK came back and my pharmacist told my i could split it and take half but now I have backed down to 1 100mg tab at night and i guess i will try to take a 1/2 in a week or so. O.K. I hope this helps
Still here in case you need me.

Old 03-25-2005, 05:34 PM   #6
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Rhonni HB User
Re: Topamax users...HELP I'm on neurontin and sick!

I got violently ill on topamax. The doc said I would love it because they use it as a diet drug for some people. I see how/why it works. You get so sick you don't want to eat. It did nothing for my pain.

Old 03-25-2005, 09:08 PM   #7
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Quietcook HB UserQuietcook HB User
Re: Topamax users...HELP I'm on neurontin and sick!


As others said, first calm yourself down. Now, I have my pill book out and yes suddenly stopping neurontin can cause seizures IF it is being taken for controlling seizures as it is an anti-seizure medication. So, if you were taking it for back/leg pain and did not have seizures, stopping it isn't likely to cause you to have a seizure, especially if you've been on it only 2-3 weeks.

You definitely need to phone your doctor as the symptoms you listed coincide with adverse side effects listed. It states that weakness, if it is a side effect, will lessen once the med is stopped. Mine and my family doctor's greatest concern when a neurosurgeon wanted me to take it was the liver and constant testing to monitor the liver. I tried it though and it caused me migraines every time I took it. Didn't take but a couple of days of that and a call to the doc. No migraine the first day I stopped it. So, call the doc and let him know what is going on. There are so many oral meds of various strengths, as well as the lidoderm and other pain patches.

I have Lortabs 7.5 and 10's for when I have to have something stronger but they make me sleepy, so I prefer to save them for migraine days. On a daily basis I use the patches (also come in at least 2 strenghs) as I can use up to three and put them on the aching spot and get up to 24 hrs relief and if it's a fairly achy day I'll take the Ultram. I'm prone to be cautious of any narcotic medication and another reason I prefer the Ultram. But, as with all medications, what works for one may not work the best for others, but you can speak with the doctor and if one isn't working, then let him know and ask him to switch it.

Hope you get something that won't give you side effects yet gives you relief.

Old 03-26-2005, 05:29 AM   #8
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dpaz HB User
Re: Topamax users...HELP I'm on neurontin and sick!

HI! I am taking topamax for severe sciatica and lumbar radiculopathy. The doc first wanted me on neurontin, but I had heard about the side effects and also that many people gain weight. I definitely do not need to gain weight and I am a correctional officer and I need to keep my wits about me. He then offered the topamax. I had been researching both and agreed to try the topamax. I have just got to tell you that if I had to give up any medication that I take, they could take any of it as long as they left me my topamax. I do realize that a lot of people have side effects while on it (forgetfulness, lack of energy, weightloss(I needed that side effect), taste perversion)There are others too. I remember that my mother in law took neurontin and she was like some kind of zombie, I never have that kind of reaction to the topamax. I started out at 25mg daily and I'd say by the 3rd or 4th day I was feeling relief of the awful burning pain. I stayed at 25mg for a little more than a month then went to 25mg twice a day, then a little more than a month later, now I'm at 50mg twice a day. I RARELY have the burning pain anymore.I don't have confusion and rarely the forgetfulness. People say they cannot drink soda while on it, I guess to some people that's the end of the world(?)I guess it just tastes bad. I rarely drank it anyway since i'm a big water drinker. But I've drank a few sodas and they taste fine to me. I think the MOST IMPORTANT thing to remember with topamax is that you absolutely MUST drink enormous amounts of water and it helps keep the side effects to a minimal, and since one of the side effects is a risk of kidney stones, the water is very important. I've lost 12 pounds since I've been on it(good side effect!!!).I've heard that people can go straight from neurontin to topamax without weaning from the neurontin first, but I know that's always for the doc to decide. We can't post websites here, but if you look up the words "topamax" and "trip" in your search engine, you will find a very good forum with very helpful people . I have learned so much there. TAke a look.

Old 03-26-2005, 12:55 PM   #9
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SpinalMalady HB UserSpinalMalady HB User
Re: Topamax users...HELP I'm on neurontin and sick!


I also tried Neurontin with awful side effects. I take Topamax for Migranes, but also had a Micro-D on Dec. 10, 2004. I take 100mg of Topamax at night, and have only experienced ONE bad side effect, and that is the taste of SODA is AWFUL...

My migraines have all but vanished, I've only had two since I started the drug a year ago. I was having at least one a day and sometimes more. I virtually lived with a migrane at all times. I have lost 72 pounds as a result of the Topamax (a good thing for me)!

When I was going thru my Chronic Pain as a result of the Herniated Disc, my neurosurgeon made the comment that without the Topamax I would not be able to function...which was a joke to me...because I WASN'T functioning...I wasn't sleeping, eating, or walking at that time. I was in 24/7 pain due to a severely crushed nerve for over 4 months and was taking Percocet 10/325, Valium and Elavil.

Happily my story has a good ending. My surgery was a success!
I have an occasional spasam, and am still recovering the feeling from the numbness in my feet. But as for pain, after my surgery, I woke up "pain free", with the exception of "surgical pain."

Good luck if you try Topamax. It has been my MIRACLE drug![/B]


Old 03-26-2005, 07:48 PM   #10
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Pebble Beach HB User
Re: Topamax users...HELP I'm on neurontin and sick!

I was on Neurontin several years ago. I started off with 100 mg per day and worked my way up to 900 mg 3 times a day for a total of 2700 mg per day. It really affected my mind. I had a conversation and fight with my girlfriend one night. The next day I didn't remember a thing about it. She couldnt believe that I didn't remember the conversation or how nasty I was, which is not like me. I ended up stopping the medication. Then I tried a lower dosage of Neurontin, and didnt have that affect on me. But it didnt do what it was supposed to do either in stopping the pain. For me it did not work....Hope you resolve the problem. Go out and make it a pain free day.... Allan

Old 03-26-2005, 09:38 PM   #11
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sandollar HB User
Re: Topamax users...HELP I'm on neurontin and sick!

I have been on Neurontin in the past and I suffered the same effects as you are, my advice is to first call the nearest 24 hour pharmacy and talk to the pharmacist (possibly Walgreens). He or She can give you some instant advice on whether or not you can just not take anymore, seizures are usually the side effect for people taking it for seizures. After you talk to the Pharmacist call you Doctor and tell his service to put in an emergency call to your Doctor, that you MUST speak with him ASAP.
I have also been on Topamax, it does cause a very bad taste to everything, I only had to stop that one due to severe painfull tingling in my feet.
However you can be switched from one to the other without skipping a beat as long as there are no other Meds your taking that would interfere.
Please let us know how your doing, and if your like me, don't drive. I was confused so badly I couldn't remember if the red lights meant stop or go, next thing I knew I was running red lights and stopping at green ones.
Try to calm yourself, the best way to stop your mind from panic is to talk to the pharmacist while waiting for a call from your Doctor.
The best of luck to you and I'll be keeping an eye on your post, and praying your feeling better soon.

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