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Title: Examples of Topamax problems? Post by Ann9900 on Dec 3rd, 2005, 9:34pm I went to Diamond Clinic this week where they re-confirmed migraines without aura and episodic clusters. I've been on inderal for a few years, have imitrex injections and oral as abortives, but just received a prescription for Topamax. (As well as O2 for my next cluster cycle - woohoo!) My question is this...can anyone provide specific examples of how Topamax has made them dumb? Are we talking about things like "Oh, I forgot where I put my keys" or "Oh, I forgot where I live"? I'm just trying to get some perspective on this. I have a very detail-oriented job, so I want to know what I should watch for... As always, thanks for the insight! |
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Title: Re: Examples of Topamax problems? Post by E-Double on Dec 3rd, 2005, 10:09pm on 01/21/05 at 17:54:58, E-Double wrote:
on 01/21/05 at 18:58:28, E-Double wrote:
It sucked! But a few find relief from it. Good luck! E |
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Title: Re: Examples of Topamax problems? Post by unsolved1 on Dec 3rd, 2005, 10:20pm Kidney stones. Twice. Thats all I have to say about DOPEYMAX ;;D UNsolved |
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Title: Re: Examples of Topamax problems? Post by Jasmyn on Dec 4th, 2005, 2:48am What Eric said. It sucked big time for me but it must be said that all people do not experience the side effects. So good luck! |
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Title: Re: Examples of Topamax problems? Post by Kate in Oz on Dec 4th, 2005, 6:30am Hi Anne, I tried the topomax for a very short while, it slurred my speach, I forgot words and I felt nauseous (sp? sick ;;D) constantly and in regards my ch - I thought my head was going to explode!! And yet like Jasmine says some people find it works well for them..... ?? Good luck, Kate |
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Title: Re: Examples of Topamax problems? Post by toolong on Dec 4th, 2005, 9:03am Doctor gave me a month sample of Topamax.After 6 days it left me in a total stuper.I have worked in the same place for 33 years and was on my way to the restroom and got lost!I had no warning it was going to hit me this way.Dr.claimed that side effects were usually not too bad.Anyway headaches were still the same,but was told that I didn't give the Topamax enough time to work!It works for some,but my advice is be very careful. :PDavid |
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Title: Re: Examples of Topamax problems? Post by jon019 on Dec 4th, 2005, 1:49pm Hi Ann, Have very aggressive neuro. Ramped me up to 100mg very quickly which resulted in following: unsafe driver (3 near accidents) could not coherently organize thoughts unable to spell words I know by heart lost writing skills lack of motivation (I basically did not care about anything and could stare at whatever for hours) Revisited neuro who actually apologized for "the hammer" approach. Based on my initial presentation (desperation and despair) she thought it best to hit the beast hard. I hold no ill will and would do it again. We decided to try a lower dose "and see what happens". Currently taking 15 mg which still causes some early morning "fog" and spelling/writing problems. BUT, along with verapamil and O2 and zomig standbys I have been PF since 9/14. It's all a tradeoff and right now I'm choosing a little fog but functionality vs debilitating pain, desperation and despair. The battle goes on. You are wise to investigate what you may be getting into. I would give topamax a try, with the thought that the lowest effective dose should be your goal. BTW, inderal was totally ineffective for me but verapamil seems to help PF wishes Jon |
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Title: Re: Examples of Topamax problems? Post by mynm156 on Dec 4th, 2005, 3:22pm I had all the usual issues with Topamax. However, I had what I call PHYSICAL hallucinations I felt like I was traped in a box, my vision was distorted, my sence of smell was wacked up also. I was sent home from work because my eyes glazed, my speach slurred. I had a Doctor who I respect very much come up ( I worked in a hospital as a Respiratory Therapist) and grab me and ask what was wrong with me without me even saying anything. So people KNEW that the drug was making me GOOFY as the neuro said. Good Luck! Mynm156 |
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Title: Re: Examples of Topamax problems? Post by Ann9900 on Dec 4th, 2005, 5:11pm Thanks to everyone for your help! I hope I'm in that group that is ok on it, but I'll watch out for the weird stuff! Thanks again! |
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Title: Re: Examples of Topamax problems? Post by CHTom on Dec 4th, 2005, 7:09pm Dopeymax made me forgetful and caused me to fall asleep at a staff meeting with the Colonel-good thing he had a good sense of humor. Didn't do a thing for the clusters. |
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Title: Re: Examples of Topamax problems? Post by sandie99 on Dec 5th, 2005, 3:21am Ann, I hope that your meds work for you. :) In my case, dopeymax made my ch worse. When I started it, I had a 24/7 headache exactly on the same place ch is for 6 days. Then I got up to 11 ch hits a day. And I becme very forgetful. For an example, I went to a store and forgot why I went there. So it was more trouble for me. Best wishes, Sanna |
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Title: Re: Examples of Topamax problems? Post by lionsound on Dec 5th, 2005, 6:57am on 12/04/05 at 17:11:13, Ann9900 wrote:
Anne, Do you have someone like a spouse. close friend, or other relative that can watch for the weird stuff too? It is very helpful if you tell someone what side effects to look out for because often they can notice changes in you first. Be well and PF, lionsound |
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Title: Re: Examples of Topamax problems? Post by E-Double on Dec 5th, 2005, 7:05am on 12/05/05 at 06:57:46, lionsound wrote:
Absolutely! |
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Title: Re: Examples of Topamax problems? Post by Ann9900 on Dec 5th, 2005, 7:42pm Well, there is my husband. But when it comes to being observant...that is another story. It doesn't help that he isn't exactly sympathetic to the "headache" problem. Other than co-workers, there isn't anyone else I'm around regularly enough. I'm debating whether or not to tell my boss. On one hand, she can be aware and watch for the mistakes. On the other hand, do I want to tell her she may have an idiot working for her?!? I'm an excellent speller, so that is one thing that will definitely stand out to me (of course - assuming I notice the errors). I'm on 25mg now for 10 days, then 50 mg. Then I stay on that until I go back on January 9th. |
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Title: Re: Examples of Topamax problems? Post by jon019 on Dec 5th, 2005, 11:18pm Dear Ann, I know I have sent mixed msgs on topamax. It is one of the frustrations of CH that what works for one is sworn as worthless or worse for others. It troubles me to give any kind of advice as it all seems so arbitrary. Topomax is one of the few that works, doesn't , or makes everything worse. It's a gamble, but dammit it aint permanent no matter what. I still say it is worth a try (and the more you know about it before hand the better). I have two more words of advice then I'll shutup: 1) absolutely know what you are getting into, BUT, don't be so worried about side effects that it destroys any chance this may work for you. 2) re spelling: It is something I have always prided myself on. Why?, who knows but it was something I was good at and noone could take away. To be unable to do it was a shock but I had to adapt. Found a coworker who was sympathetic and had the best dictionary in the place. Used it when I needed (and you will know) and told her when I don't need this anymore you will know I'm OK. If I still need it, please bear with me. She has and did (God bless her) and I will get through this. You can too. Whatever your decision, I am thinking about you and hoping for the best. Regards Jon |
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Title: Re: Examples of Topamax problems? Post by bnfreeman on Dec 7th, 2005, 9:46pm At low doses I was fine. I was stupid when it was upped. But it worked great for a good six months. I have even thought about giving it another try. Everyone is different. My aunt takes 200 mgs for her HA and has no problems. |
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Title: Re: Examples of Topamax problems? Post by andyiceman on Dec 8th, 2005, 7:31pm Hi, "Topurslfmax" was a great idea by my neuro - trouble was it was a terrible idea for me. Yes for some pts it really works. For me, slurred speech, forgot where to drive to office - in fact on day three of treatment couldn't safely rembmer handbrake drill so thought it best to not go in! Stopped by GP after 10 days - worst med induced 10 days and it still had no effect on my CCH. Nice try docs - didn't work |
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Title: Re: Examples of Topamax problems? Post by BK on Dec 13th, 2005, 10:48am I have a question about topamax for those of you who have experienced bad effects. I see one response citing 6 days into treatment before noticing bad effects. How long for others? I'm into day 2 on 250mg ER once a day and haven't noticed any ill effects other than a little tiredness. I go up to twice a day in a week. So I'm trying to gauge when I should really be concerned about getting dopey. Thanks |
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Title: Re: Examples of Topamax problems? Post by E-Double on Dec 13th, 2005, 10:54am 1st day felt absent minded |
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Title: Re: Examples of Topamax problems? Post by jon019 on Dec 13th, 2005, 12:05pm Hi BK, Are you sure that is not 25 mg (not 250, which is a lot). In my case it was a one week ramp up from 25 to 50 to 75 to 100. Literature search and a pharmacist says this is pretty typical. On the other hand, if your neuro is using Topo as a cycle buster (some evidence in literature for this) maybe 250mg is his/her intent. 500mg a day sounds like way to much for a maintenance dose though. Started noticing really disturbing side effects after one week and at 100 mg/day (quickly ramped down). Currently taking 15 mg/day. Some negative effects and am considering stopping(which could be tempting cycle restart, so not an insignificant decision). You need to know if this a short course dosage or maintenance. Ask the doc. Regards Jon |
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Title: Re: Examples of Topamax problems? Post by simplevox on Dec 13th, 2005, 12:15pm I had terrible experiences with Topomax. I had all the slurred speech and loss of motor skills. I crashed my car three times in a week. The worst part though was that it also causes you not to sweat ( I found this out on the manufacturer's website). That may be alright during the winter when it's cold, but I was on it during August in Texas (whenit was 110 degrees outside) and I couldn't be outside for more than 5 minutes without literally passing out from being overheated. I walked a few blocks to lunch one day and then passed out back at my office... literally fell down in the floor. My husband had to come get me. I will NEVER take it again. |
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Title: Re: Examples of Topamax problems? Post by BK on Dec 13th, 2005, 1:28pm Jon, Yes it is 250 and not 25. I thought seriously about taking that much to start but my cycle keeps ramping up so out of desperation... If that ends up being too much I will get a lower dose and titrate up. But I was trying to get a feel about when it would hit me full force. I can't tolerate any abortive thus far so my neuro is trying to hit me with all he can for control. Thanks for the input. |
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