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    Old 01-26-2005, 10:21 PM   #31
    hannasnana
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    Re: Topamax Questions

    Hi Sugar, Liz's memory got bad before going on the Top. The memory loss was real evident when she started having all the migraines. When her Neuro suggested the Topomax it concerned my husband and I because one of the side effects is memory loss. We did research on it and talked to some other DRs. and got on the net. It was about 4 weeks before we started her on it. It seems like Liz is always sick to her stomach. Not sure if its the medication or root cause of the migraines.

     
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    Old 01-27-2005, 03:40 AM   #32
    Travis from MN
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    Re: Topamax Questions

    It depends what you are trying to block out for earplugs.

    The reusables are not that bad, but a lot of the time they block out too much for use around people to have conversations unless you work on "tweaking" them (not having them in properly, but it still blocks some noise). Brand name EAR makes reusables that are flesh tone if you just want general ear plug style. I think they are rated at 23dB or so. Another one they make (christmas tree shape) that I like is only rated at 19dB soft rubber foam with a "stem" that sticks out of your ear. Visual complaint there is they are yellow. I've used both (concerts way toooo many times; construction a few times)

    The construction "over the ear" ones are good, but are annoying and often cause physical stress on the head and I'd guess would worsen headaches.

    If you are willing to spend a signifigant amount of money, Bose and another company make nose reduction headsets that can also take inputs (for tape or CD). Not cheap, but they are great for flying. The physical stress they cause is not bad at all; only the cost.

    --Travis

     
    Old 01-27-2005, 07:37 AM   #33
    hannasnana
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    Re: Topamax Questions

    Thanks Travis.

     
    Old 01-27-2005, 04:29 PM   #34
    Sugar4408
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    Re: Topamax Questions

    Hey Travis,

    Yes, I am on Teg, and Trileptal at the same time. Yes, I know that they are closely related; I requested to try the Trileptal to get off of the Teg because I wanted to try a different medication with different side effects. I would be nice to be on a medication that doesnít affect my memory too much.

    My doctor will not take me off the Teg because itís the only medication the stops my grand mal seizures. When I started to having complex partial seizure, he tried different medís (Diamox, Gabitril, Keppra, Zonagran,) and nothing has worked to stop the complex partial seizures. When I was a teenager I was on Dilantin, which caused my gums to swell and my teeth spread.

    Anyway, thatís the reason why Iím on Teg and Tril.

    I know what you mean about Head of the Neuro department. I had one that but me on that awful Dilantin. I think every doctor that I go to, I have issues. The doctor that I have now is head of the Epilepsy department but I still had him check out.
    Sugar

     
    Old 01-27-2005, 04:34 PM   #35
    Sugar4408
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    Re: Topamax Questions

    Hey Nana,

    I so sorry to hear about your daughter, and her migraines, my husband gets them and he can even get out of bed. I hope the Top helps her.

    Sugar

     
    Old 01-27-2005, 08:01 PM   #36
    Travis from MN
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    Re: Topamax Questions

    Ok Sugar, just wanted to make sure you were aware about the drugs.

    My current Epileptologist I admire. He doesn't push, no bad mixes prolonged (the zonegran was the only problem drug mix, but that was short), likes going S-L-O-W. He is glad I read up on my meds. One comment he made was I am one of the few patients he has that he does not have to worry about. He knows I'll call if problems come up.

    BEING EDUCATED ABOUT YOUR MEDICATION DOES NOT HURT.

    Nice to know I am not in the minority when it comes to being educated on the treatments!!

    Not being a doc or pharmacist I didn't know if Teg and Trileptal would cause {problems} toxic or similar symptoms if the older drug (Teg) was not reduced in a patients regiment. I would GUESS something would show up for symptoms but never being on Tri and Teg at the same time (never being on Trileptal ever).

    --Travis

    Last edited by Travis from MN; 01-27-2005 at 08:02 PM.

     
    Old 01-29-2005, 12:17 AM   #37
    hannasnana
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    Re: Topamax Questions

    My daughter and I went to see her Dr. today. We were able to spend time talking about the topamax and if its working. The DR. is adding a low dose of an anti-depressant to see if decreasing stress will help with the migraines.

     
    Old 02-06-2005, 10:21 PM   #38
    gia's girl
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    Unhappy Re: Topamax Questions

    Hi my name is Gia, and i'm new to all this.. I have a 22 month old baby that has been tx'd with epilepsy, night terrors, and acid reflux. anyways, she just got out of the hospital after being there for over a month, and on 3 different meds. the latest is the topomax. since she has been on this med she has become so combative and self abusive. she is biting herself, screaming, pulling her hair out, digging up her face, punching herself in the face, and hurts anyone who gets near her,and to say the least my other 2 children are petrofied of her. she has had eeg's, mri's, cat scans, and everything else you can think of...the last eeg lasted 6 days. the dr's are all baffled because there are so many things going on at once. I am lost and don't know where to turn. She has also forgotten her granparents and is afraid of them which has hurt them very much. What can I do to help her?? My beautiful baby girl has turned into a posessed monster. I am also about to lose my job as noone will care for her because she attacks them. the worst thing is she goes into a deep trance after she does all this and is non-responsive. please help!!!

     
    Old 02-07-2005, 08:33 PM   #39
    hannasnana
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    Re: Topamax Questions

    Hi gias girl, This is so horrible for you. Your daughter must be so little she can't handle the topamax. Call your Dr. The side effects are hard enough on older children and adults. I've never heard of these type of side effects. There is also another board on here you can go to for epilepsy. You also find lots of helpful people with epilipsy and have tried lots of medications.

    Also have you tried the high fat low carb diet for your daughter. Because of the rules of this board I can't give the name of the book, but you can find it on the net. Just look for the diet for epilipsy. I have read the studies....there have been great results for children especially if medications are working for them.

    Don't stay with Topamax if its causing such a nightmare for your daughter and family. There are other medications. BTW, short term memory is a side effect of topamax.

    I'll be praying for you for answers!!!
    Nana

     
    Old 02-08-2005, 07:26 PM   #40
    gia's girl
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    Unhappy Re: Topamax Questions

    Thank you Nana,
    I got her off the topomax, but it isnt out of her system yet so she is still having side affects. She cant go on the high fat diet due to her acid reflux, it calls for nothing fatty at all. I spoke to someone today from the epilepsy foundation and she said that the majority of the things i explained to her about my daughter does not sound like epilepsy, but maybe something else neurological inside her brain going on so we are taking her to a childrens hospital that has a epilepsy specialty center in it as well. she does still have siezures, but also some other horrible things going on as well. I am praying for the best as we both cant take much more of this. I pray with her every day and tell her to ask God to take all her pain away and make her better. She used to be able to talk really well, and now she is back to infant like behaviors and has no control of her arms and hands as well. today she actually stopped being able to walk on her own and was very unsteady when she tried to stand and would fall over. I know one thing I am scared to death but pray for LIFE!!! thank you for your support though...Gia

     
    Old 02-08-2005, 11:22 PM   #41
    hannasnana
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    Re: Topamax Questions

    Hi Gia,
    I can't even imagine how scared you must feel. I hope you have a good support group of family and friends. I'll keep praying for you and your baby. Keep us posted here.
    Nana

     
    Old 02-15-2005, 09:31 AM   #42
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    Re: Topamax Questions

    HEY, TRAVIS FROM NM.....

    I've been trying different drug mixes since October and I've finally found one that seems to work now that we've added Topamax, even though I have all the symptoms everyone here has mentioned. I'm also taking Zonegran and Lamictal.

    My question for you is, what problems have you had with zonegran? Since we're trying to figure out which drug should be weaned out and which should stay, I was wondering what your epileptologist says about it so I can discuss it on my next dr's visit. Thanks!

    New to the board!

    Velie in Odessa, TX

     
    Old 02-15-2005, 10:39 PM   #43
    hannasnana
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    Re: Topamax Questions

    Topamax only works for awhile for my daughter. The headaches are less in frequency and less in pain each time she upts her dose of the tope. But after a week or so the strength seems to wear off and she has to up the dose again. Had to take her for a shot again today for a migraine she has had for at least 5 days. I don't know if there is another medication that is used like topamax for migraines. Anybody know?

     
    Old 02-18-2005, 11:37 AM   #44
    Bingerbee
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    Re: Topamax Questions

    Something to ask your doctor----Would it be possible to stop the Topomax completly, and instead go on narcotics for a brief span? The idea is that Topo is probably not working as well because your body builds up tolerance to any drug your'e taking every day. You have to keep increasing the dosage or you will not get the same results. If you could stop the Topo long enough to get the tolerance level back down there's a good chance you'll find it working better with less side effects. Some people can't deal with the narcotics for long, but it probably wouldn't take to long to get your levels back down. I have researched a lot of meds and how they work for a long time, but Topomax is not one of them, so a reminder---this is just an idea, I don't really know what I'm talking about.

     
    Old 02-18-2005, 03:16 PM   #45
    Travis from MN
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    Re: Topamax Questions

    Quote:
    Originally Posted by velie
    HEY, TRAVIS FROM NM.....

    I've been trying different drug mixes since October and I've finally found one that seems to work now that we've added Topamax, even though I have all the symptoms everyone here has mentioned. I'm also taking Zonegran and Lamictal.

    My question for you is, what problems have you had with zonegran? Since we're trying to figure out which drug should be weaned out and which should stay, I was wondering what your epileptologist says about it so I can discuss it on my next dr's visit. Thanks!

    New to the board!

    Velie in Odessa, TX
    Topa and Z are ALMOST the same... it's uncommon to be on both at the same time. (let me think) One (I think Topa) is the sulfamate substitute... Which I took for Z containing sulfamate. Otherwise the two are very similar.

    I may be a bad case to go on for questioning Z. I was on it so short.

    I had very fast weight loss and my Dilantin levels shot through the roof; we found out the Dilantin levels later. I was only on Z for maybe 3-4 WEEKS. In that time with the complications I lost 25% of my body weight, and with Dilantin geting high level wise, I became toxic. I had to, for a short time, move in with my folks until everything leveled out. I needed a CANE to walk. I felt horrible using a cane and I was in my late 20's :EEK: . Vision was bad (again, blame Dilantin, I was already OFF Zonegran).

    When symptoms first started, we tried stopping my increase, that didn't help; dropping my Z dose by 100; that didn't help. So 4 days after the reduction my Epileptologist quickly took me off it; and I mean at an emergency rate (no reactions thankfully).

    So you know; I was on TegXR, Dilantin, Keppra and Zonrgran at that time.

    Best of luck in decisions with the doc. I'm just suprised to hear somebody on Topa and Zonegran at the same time being they are very very similar drugs.

    --Travis



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