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Linda_Howell
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Need help with something
« on: Mar 13th, 2008, 6:45pm » |
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I have a Family Service contact who wants information on Topamax. I gave him all the drug information he needed, but I'd sure like to have someone who was on it, give me a one or two paragraph personal testimonial about the side effects...in other words....mainly why we call it DOPYMAX.
Linda
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Jackie
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Re: Need help with something
« Reply #1 on: Mar 13th, 2008, 7:24pm » |
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Blake was on Topomax for almost two years. It was a good prevent drug for him. Then it stopped working...so he upped the dose and still no good results. He also got down to 146 lbs and had to stop the drug.
Blake says....Food didn't taste good. After two or three bites all flavor was gone. When I first started on it people thought I was on 'happy pills'. Jackie thought I was a smarta*s and she wanted to slap me. I can't describe it but it really changed me mentally. After being on it for several months my energy level was gone. Maybe it was the weight loss but I think it zapped by energy even before that. I wasn't dopy on it at first but over time I did start to forget things and I felt like I couldn't think straight and didn't know myself anymore. It was a great drug for keeping me fairly pain free but there are side effects for sure. It is worth a try though. That's about it.
Jackie & Blake
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Jackie
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Re: Need help with something
« Reply #2 on: Mar 13th, 2008, 7:28pm » |
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Couple more things.....
We took Blake's dose up VERY slowly. I think that helped with the initial side effects that some people encounter. Also taking it at night helps some tolerate the drug better.
We did think it was a miracle drug for awhile...
Jackie
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Linda_Howell
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Re: Need help with something
« Reply #3 on: Mar 13th, 2008, 7:57pm » |
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Thanks Jackie. That's exactly what I needed. 
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E-Double
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Re: Need help with something
« Reply #4 on: Mar 13th, 2008, 9:32pm » |
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• There is a reason that Topamax is known by users as DOPEYMAX!!! I have told you what it is that I do for a living. Knowing that, you will understand how very important it is for me to have my wits. I need to be quick, have keen observational skills and to always be lucid. Well, first came some very mild absent mindedness. This may not seem so bad because one would think that you can use memos or post its. The problem is when you forget where you put your post its. This rapidly increased to complete stupidity. I was literally dumb as a rock and beyond forgetful. This was all at relatively low dosage. I could not teach. I could not treat any of my clients. I could not decipher the procedures which I developed and knew like the back of my hand. I would walk into my house and not know where I was.Next comes depression. I got off of this as quick as I could. I'm sure you are familiar with the medication or soon will be. You can not come off quickly because if you do not already have siezures you might develope them. I spent the next couple of months trying to snap out of depression and recovering form dumb fuckness! I also had to rebuild my reputation a bit. It was a nightmare!!!!!!!
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Sean_C
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Re: Need help with something
« Reply #5 on: Mar 13th, 2008, 9:36pm » |
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I guess it makes you blonde Linda LOL 
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Linda_Howell
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Re: Need help with something
« Reply #6 on: Mar 13th, 2008, 9:40pm » |
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Thank you Eric. THAT is exactly what I need too. Printing it off now.
Sean? Go to your room. Do not pass go, do not collect 200 dollars or anything else. You are grounded til the cows come home.
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Sean_C
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Re: Need help with something
« Reply #7 on: Mar 13th, 2008, 10:29pm » |
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on Mar 13th, 2008, 9:40pm, Linda_Howell wrote:| Sean? Go to your room. Do not pass go, do not collect 200 dollars or anything else. You are grounded til the cows come home. |
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LOL you know I'm a blond too, or at least I was till these gray things started to take there place
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cash5542
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Re: Need help with something
« Reply #8 on: Mar 13th, 2008, 11:02pm » |
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Lisa has been on Topomax sice Oct. 2006. She upped the dose very slowly. In the beginning it was all taken at night and it wasn't until she was on 150 that she did some of it in the morning. Early side effects were tingles in the feet. This was a bit annoying since she was a swimmer and the water seemed to make it worse, especially when her feet were in her fins. She used Topmax her senior year of college and wrote a 90 page paper, "Austrian Memories of National Socialism". She did a really good job on the paper and had no memory loss. Another side effect that has been a blessing is her stuttering is GONE. For many topomax creates speech issues but not her. Migraines also have subsided.
My concerns are comments I read here. It may not continue to work although she is in her 2nd year and continues to not have problems. Another concern is weight loss although she needed to lose a little weight after long term use of prednisone for her asthma added some extra pounds! I have a good friend at school who took Topomax for migraine and after 1 weekend couldn't say her ABC's and quit a week later.
I hope this helps. We are still looking at it as a good drug and cautiously watching the weight issues.
Charlotte (and Lisa)
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ccbiggsoo7
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Re: Need help with something
« Reply #9 on: Mar 14th, 2008, 3:02am » |
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Actually triggered my headaches, soon as i got off it they stopped 2 days later.
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chris
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BarbaraD
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Re: Need help with something
« Reply #10 on: Mar 14th, 2008, 4:31am » |
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I've been on it since '99. Take the whole dose at night (always have) and have noticed very little side effects.
Some short-term memory loss, but I'm an accountant and it really hasn't affected my work any. I've always had to write notes to myself.
Over the years, my neuro has let me regulate my dose (I'm chronic) depending on the severity of my headaches. My maintenance dose is 100mg, but I have been as high as 400mg (not for long). For a long time I stayed on 300mg with no adverse affects, but have been on 100mg for a long time now.
Food doesn't taste all that great, but that's no big deal. I still haven't lost all the weight I need to lose, so I don't worry about that.
It's been a miracle drug for me and I hope it never stops working. But my neuro has had me on Trazadone from day one also, so if there was any depression with it I guess the trazadone took care of that.
Hugs BD
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beachmusic
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Re: Need help with something
« Reply #11 on: Mar 14th, 2008, 7:14am » |
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I have been on it exactly 2 1/1 months and lost 20 lbs exactly. The weight is still dropping!! Not that I didnt' need to lose a bit of weight but this is excessive and has me concerned. I have zero appetite, only thing that taste halfway normal is vegtables and sweets. I can't remember the time of day to eat anyway. My cognitive functioning is shot, cannot remember my words, cannot drive, so working is out. Oh and I forgot to mention the dizziness, lightheadedness, 2 falls, and I cry all the time. Stilll no return call from doctor.
But hey the headaches are gone! I am on 150 mg all taken at night. I have tried weaning down twice both times the headaches start to return. Again just my 2 cents.
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Gator
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Re: Need help with something
« Reply #12 on: Mar 14th, 2008, 8:56am » |
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on Mar 14th, 2008, 7:14am, beachmusic wrote:| But hey the headaches are gone! |
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No brain - no pain, eh?
Topamax is one of two medications I will NEVER take again. (The other being Tegretol aka Carbamazapine). Topamax made my attacks much worse. I had terribly vivid nightmares while taking it and even had at least one hallucination that I can remember. While on Topamax, I was dumb as a bag of hammers. I would start to say something and be talking about something totally different by the time I finished, if I finished at all. Many times I would just stop talking mid-sentence. Sometimes I would make comments that had nothing to do with the conversation at hand or that were inappropriate or embarrassing to my wife. At times, I would sit and stare blankly into space. The kids were terrified of riding in the car if I was driving. My wife took my car keys as I was unsafe to drive. All in all, it was a terrible experience for me and my entire family.
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catlind
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Re: Need help with something
« Reply #13 on: Mar 14th, 2008, 9:37am » |
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I took topomax, and had good regulatory effects of the clusters then I started getting eye pain. Same side as my clusters, took about a week for me to realize that it was just eye pain, and I was laying down to help relieve it so it wasn't a cluster.
A little research revealed that topomax can cause a form of secondary glaucoma, and after talking to the resident experts here got my ass to the doc and immediately began titrating down my dose. The opthomologist checked me out and they couldn't be certain as I was already off the drug by the time I saw her and it is something that completely reverses itself when you come off the drug.
That being said, my 16 y/o now is officially diagnosed with clusters, 3 years running he got rather familiar looking headaches that oxygen aborted. He was put on topomax - a very very low dose - for a seizure disorder. The topomax has controlled his seizures very well, and he is also on cymbalta in conjunction with it so the depression has lifted pretty much completely now, and this year as his cycle should have started, it did not. He's had a few random hits, and as more activity began the neuro upped him to 50 mg. (remember he's 16) and we've almost completely skipped his cycle this year, another couple weeks to go and topomax/cymbalta/periactin will have prevented his cluster cycle.
The good the bad the ugly.
Cat
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LeLimey
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Re: Need help with something
« Reply #14 on: Mar 14th, 2008, 9:49am » |
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Gator's experience echo's mine. I felt like everyone was speaking a foreign language and I had to learn it in order to reply. My ex said it was painful to see me like a zombie, unable to process what anyone was saying and when I finally did - I was in the same mess trying to process a reply.
It made my hits worse and more of them and it got to the point where I didn't know what was real and what was hallucination. The crunch came when I was having such graphic nightmares that I was vomiting in my sleep. Without a doubt, the single worst experience of my life.
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sandie99
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Re: Need help with something
« Reply #15 on: Mar 14th, 2008, 11:53am » |
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I was on topomax for a short period back in spring 2004. I cannot recall the dose, but I do remember the results very well!
Topomax made me forget things... I went to places and forgot why. I found it hard to make a proper sentence, never mind a 3000 word essays for my uni classes! And the part I hated the most: I got hit more frequently and harder. In the end I actually booked an appointment to see my GP and begged her for a permission to quit topo... Luckily she agreed with me.
I know that topomax works wonders for some of us, but I'll never ever take that one again! Writing is my hobby and my profession and with topo, thinking streight was incredibly difficult and writing impossible.
Sanna
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Linda_Howell
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Re: Need help with something
« Reply #16 on: Mar 14th, 2008, 12:19pm » |
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Thank you everyone (except Sean  ) I knew I could count on you. I have never taken Topomax, so I needed these personal testimonials.
I'm sorry for putting this thread on the general board but I figured I'd have a better chance of it being seen here, rather than on the meds board or something.
You guys are the greatest.
Linda
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