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    Old 02-28-2005, 09:46 PM   #61
    hannasnana
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    Re: Topamax Questions

    For a few weeks now I have been posting how the top is not working like it use to for Liz. Our GP added a anti-depressant to help with stress level. (incase that was the problem) Its been 3 days now and the headaches are less and less in severity.

    Liz was experiencing a high stress level due to her excellerated hearing. She can hear things now that a person with normal hearing can't hear. Such as the lights, or computers. She has even become very sensitive to lights, they will cause sharp pains in her head. So having her stress level lowered has been a Godsend.

     
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    Old 03-01-2005, 01:01 AM   #62
    Travis from MN
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    Re: Topamax Questions

    What drives me nuts; even though I have somewhat damaged hearing from working gigs; I'll hear the hallway door outside of my apartment. I'll hear the COMPRESSOR kick in from my fridge. ARG!!! I don't mind if my ears are needed to review a piece of music; but let me filter them OFF at times! I dislike hearing the light tubes when I am watching TV. I found IF I turn my head JUST SO I can block out the hum the lights make... but it is maddening.

    I was hearing the vibrations of my radiator!!!! how many of us would complain about that?.. Driving me nuts. but my ears are pretty good. When I get a new CD I'll throw it in and put on my pro headsets to listen to it so I have a TRUE reproduction of the music. Music I wish to hear true. Not through a cheap generic headset, but with the headsets the STUDIOS use. Thats exactly what I have. Not cheap, but worth every penny for the quality it produces if you are an audio freak.

    Ultra high freq's are not a problem; neither are ultra low (those are very hard to even DETECT; you'll feel those ultra low's more than hear them).

    I get wakeup alarms from nature... Woodpeckers comming to my WINDOW and hammering on the feed! the 430AM transport flying overhead. there is a 245 train that blares it's horn. Nature I don't mind as much. Man made drives me up the wall.

    --Travis

     
    Old 03-01-2005, 07:52 PM   #63
    katy2465
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    Re: Topamax Questions

    How long do you think it takes for this to REALLY start kicking in? I have only been taking it for a week and not much has happened (not that I even expected it to) There has been a slight difference in the pain though.

     
    Old 03-01-2005, 09:48 PM   #64
    Travis from MN
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    Re: Topamax Questions

    For headaches... Most likely at or near 100mg/day I'd guess you should notice something based on my communication with anoher headache patient. Do you know what your destination dose is (how high do they want to bring it up to)?

    --Travis

     
    Old 03-01-2005, 11:42 PM   #65
    hannasnana
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    Re: Topamax Questions

    Hi Katy,

    My daughter was started out on 25 mg a day and was titered up to 3 a day. She felt a difference right away within 3 days. Headaches level dropped way down. Also she was able to just take tylenol or ibuphren for headaches instead of the heavy duty stuff. The Top worked great for awhile then she started to have breakthru headaches again. Then they upped the dosage again. She is now on 125 mg a day. I think her maximum is 150. Many people on the board are up to 300.

    There is a regeme for migraines like you and Liz have. Most people take the Topamax or something like it, plus have a pain med like vikiden or fiorecit, then for break-thru headaches they take relplax, accert, or imitrax.

    Also, some people are also on an anti-depressant to help limit stress which triggers their migraines.

    Just recently I posted that Liz was put on Pomelor(anti-depressant) and that has really helped. Before that the top was not working as well.

    Nana

     
    Old 03-02-2005, 01:06 PM   #66
    katy2465
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    Re: Topamax Questions

    My doc told me we would only get up to 75 mg. (25 in the am and 50 pm) On the package he gave me it said by the 4th week you should be up to 100 mg though, I guess he doesnt think that is safe for me for some reason.

     
    Old 03-02-2005, 01:09 PM   #67
    katy2465
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    Re: Topamax Questions

    I have felt somewhat of a difference, but am still getting occasional headaches. I havent been taking tylenol or any other ibuprofen just because I want to make sure the Topamax is working on its own I guess.Hopefully things will continue to get better! Thanks!

     
    Old 03-03-2005, 04:52 AM   #68
    Travis from MN
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    Re: Topamax Questions

    I can't comment on it for migrain treatment; but I will take tylenol when needed and not have problems... but I also don't suffer from chronic headaches.

    Unsure if Naproxin would be an alternative that could be used. You would have to check with Dr/Epi/Neuro on that.

    I wish I could help on any alternatives, naturalpathic or homeopathic remedies... but you'd need to know where the headache is (and what symptoms) for what remedy to use. I know of ONE for optical strain due to looking at moniters; but a lot of people don't think much of homeopatic remedies... and I won't list them on here no matter what.

    I stay away from asprin due to the blood thinning and stomach effects it has caused me but the last one is personal. If it works for you and your doc approves it then make your decision.

    I know my friend was put on Topa for her headaches and removed from a narc when the bad ones strike (that drug put her in la la land). She likes the way it controls the migrains (not near the sideFX the narcotic had) and it seems to work for her.
    It suprised me that her Neuro (for a headache?! I'm glad but sounded out of ordinary for a non epileptic non head trauma patient) gave her the FULL WARNING rundown for Topa. The possible eating problems, food and soda distate, perspiration, potential insomnia... hair thinning; etc.

    I was shocked she was so well informed when first starting. I started to give her the rundown myself when she told me she was already told this.

    I wasn't even that well informed except for reading online (well, I didn't need to be told by my Doc, thats why. I cut him off when he was starting to tell me and continued the generic FX lineup and made him laugh...) I already READ the FDA paper before starting the drug!! They didn't know some of the FX at the time it was submitted.

    I told her it sounded like she had a very well informed Dr to pass on that data to her. I let her know how I had to start forcing myself to eat after a specific dose; and how energy went downhill and I couldn't bike how I could before after Topa's dose was raised; as a JUST IN CASE she ever needed to.

    I have not had the typical headache since on Topa... but visual (optical originating) headaches I have from bright sunlight when waiting to try and take good pictures when staring outside, until I placed the darker lenses in my sunglasses to fix that.

    --Travis

     
    Old 03-03-2005, 05:50 PM   #69
    hannasnana
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    Re: Topamax Questions

    Hi Travis,
    The Neuro didn't tell us anything except that it would make her tired so to take it at night. I looked on the web and did all the research on it. After that we were hesitant to give it to her for about a month. Then I talked with 2 other Drs. and we felt ok to start her on it. I was really disppointed in our Neuro and told our GP who had sent us to him. She was glad to know how we felt and is working with Liz now and consults with the Neuro herself.

     
    Old 03-03-2005, 11:12 PM   #70
    Travis from MN
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    Re: Topamax Questions

    If I recall, my friend is BID for her Topa for headaches... they try to do that so your levels don't fluxuate I'd gather from what I know of Topa's half life.

    Once a day sounds odd... but this is comming from a patient that is accustomed to BID, even TID for doses and the decay of drugs thinking one needs to keep the level consistant to prevent breakthrough seizures

    Good GRIEF I sound like I took med training!!! ROFL!!

    --Travis

     
    Old 03-04-2005, 10:14 AM   #71
    hannasnana
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    Re: Topamax Questions

    remember, she is tietering up to 75mgs.

     
    Old 03-07-2005, 08:00 PM   #72
    gojumo
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    doctors

    I've only been on Topa for about 3 weeks, Migraines. but my dr. only told me to expect to lose weight and maybe have some tingling in my hands and feet. When I got my prescription a few days after I starte the sample pack and the pharm tech. asked if I had any qu's for the pharmacist about the drug, I said yes. I asked him if the s.e.'s would get better and was this normal (not being able to think straight etc.) He was like "I don't know" "call your dr.". I wonder if they were on this drug if they would become better informed! I'm so happy to have found these sites... If not, I would have thought I was losing it for sure! Thanks for everyone out there that listens and gives input. Gojumo.

     
    Old 03-09-2005, 03:59 PM   #73
    all9lives
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    Re: Topamax Questions

    I have to say that I have been on it for about 3 1/2 weeks now. I do feel the tingling in my fingers and have lost 4 1/2 ponds. My foods just taste so different. I am starting to have som difficulties sleeping at night, anyone else having problems sleeping?

     
    Old 03-09-2005, 06:59 PM   #74
    Travis from MN
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    Re: Topamax Questions

    The only "sleep" related issue I have not posted on is the sleep cycle. It takes me time close to a WEEK to get back to what I call normal since I started on Topa.

    During the abnormal I will be waking at 4PM; or at 4 AM!!! NOT my normal cycle. This last week I held awake over day for 30 HOURS to get back on cycle so I went to sleep at a normal time (waking at 8 or 9 AM). After 18 hours I was so out of wack It is hard to explain... I ended upgoing to the bar (normal for me) and having a beer AND 4 SODAS (not normal) for the caffine to keep me up for extra hours so I could stay awake so I would fall asleep at close to the "normal" sleep time.

    After getting on Topa I noted sleep cycles, if not kept, were hard to get back to usual. In my case it takes close to a week readjust to normal after getting offwack for a day or two. Topa is not a drug that is forgiving for sleep cycle.

    I could flux my time calandar prior without problems... NOW I can't. I need to keep my wake and sleep pretty constant. If I remain awake longer I'll have problems.

    Interesting to hear if others have had this problem with Topa and sleep pattern.

    --Travis

    Problems GETTING to sleep had never bothered me. Also consider I am also on Teg (1200/day) and Keppra (3000/day) along with the now 450 of Topa, lowered from the 500 dose I was on. I have always been a heavy sleeper.

    I never noted the tingeling effect... but I am on it for seizures, and with two other drugs in my system that may be why. I am very tollerant to drugs effects until the sideFX become problamatic.

     
    Old 03-19-2005, 12:37 PM   #75
    gingerweezie
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    Re: Topamax Questions

    Hannasnana ~ I have read MANY of your postings today in different topics and they all have been very informative! I started Topamax 2 weeks ago. I take 50 mg before bed. I'm not sure what he's going to work me up to. I've had a headache everyday since December 27th!! I've actually had headaches my whole life. This one's different! The last 2 wks I've actually felt worse but I'm going to give the RX time to work and see what happens. I had an MRI and the only thing it showed was a previous mini-stroke, with no exterior effects. (That's a whole 'nother story!) I go for an MRA on Monday. You said something about your daughters red face and ears. I get that too along with my headaches sometimes! Did you find anything else out about that? I'd like to learn more about trigger foods. Where do I go? I'm not very good with the "net." I'm lucky I even found you guys! I'm in desperate need of help from anyone with any suggestions!

     
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