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Title: I'm back on Topamax.... Post by BarbaraD on Mar 12th, 2007, 1:40pm so if I forget where I am or what this place is -- someone just remind me. Have been off it for a while now, but talked to the neuro this morning and we decided to go back on it. It's the only thing that's ever really worked for me -- keep your fingers crossed that it does its magic again. The DHE didn't work to break this cycle, so.... I spent last night screaming and not getting any rest, so I was on the phone when the doc got to work this morning. Of course I was out of O2 last night also, but theyr'e delivering a new supply this afternoon. Anyhow I'm gonna be better tomorrow... how's that for positive thinking.... Hugs BD |
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Title: Re: I'm back on Topamax.... Post by Rosybabe on Mar 12th, 2007, 2:05pm Hi BD just to read about spending the night screaming brought bad bad memories to me..so sorry :'( I tried Topamax last year but I quit because I was always like a zombie, My blood presure is always low (95/55) and with Topamax was even lower, no good for keeping up with a full of energy little one ;) But I really hope it works for you and you will get the rest you need..your Little one needs you!! |
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Title: Re: I'm back on Topamax.... Post by LeLimey on Mar 12th, 2007, 3:22pm I know topomax has always been successful for you Barb so I'm wishing you all the luck in the world breaking this awful cycle for you - I'm so sorry the DHE didn't work. Just as a thought though, would it be worth maybe talking to your doc about an in-patient infusion of it next time as that seems to be by far and away the most effective way to have DHE based on what I've read? Has he put you on a pred taper or anything to give you a break while you wait for the Top to kick in? Right now I just want some pain free time ASAP for you lots of love Helen |
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Title: Re: I'm back on Topamax.... Post by Samiam on Mar 12th, 2007, 4:06pm Hi Barbara, I'm so sorry you had to go though that. I too had one hell of a day and night yesterday. Nothing I tried worked and I wasn't near my O2. I could have slit my wrist very easily yesterday but so far although feeling like shit I'm doing OK. Topamax is the one drug that I never tried and was afraid to try. Don't really know why but I was. Can you tell me a bit about it when you get a chance. I'm sending you all my will power to get you though this until yours kicks in. Sami |
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Title: Re: I'm back on Topamax.... Post by UN solved on Mar 12th, 2007, 4:49pm Sorry to hear the DHE didn't break the cycle. Did it give you any relief at all ? The best way to get it ( or should I say the strongest way to get it ) is by inpatient infusions. :-/ Helen said the Topo works good for you ?? If it was working, why ever stop taking it ? Just out of curiosity, have you ever tried Histamine desenstization ? I swear by it !! Goodluck Barb PF Wishes Unsolved |
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Title: Re: I'm back on Topamax.... Post by hikerguy on Mar 12th, 2007, 5:07pm I'm on my my 2nd wk of topamax 1st wk was the small dosage it worked last cycle I too have had no sleep in three days i feel like I'm in a nightmare on elmstreet movie if I'm awake the o2 will abort but if i awake its too far gone and we dance the night away...so I'm hoping the top breaks this cycle soon...PFDAN too all....Chris |
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Title: Re: I'm back on Topamax.... Post by BarbaraD on Mar 12th, 2007, 6:48pm He put me on a predisone taper and topamax. I just got tired of taking meds is why I got off it. But, may not again... I'd really forgotten how bad they can be without anything to abort. Un S -- I'm way out in the country now and the docs up here don't even know what a CH is and I'm not up to giving instructions to the nurse how to give it right now. The last time I went in the hospital for the IVs, they mixed the wrong stuff and had I not caught it, -- well it was lethal and the damn nurse wanted to argue that that's what the doc ordered. So I'm really afraid to go in the hosptial. I don't know when I've had 10 doses and it not break the cycle, but this time it just didn't. I had relief while I was taking it, but as soon as it was finished - Bam! The O2 people just called and it's going to be Wednesday before they get the O2 to me. Hope the pred and topamax do the trick. I've take cafergot once today and had a couple of Red Bull's and a LOT of coffee. Right now I could bounce off the walls without a problem. And Samian - topamax worked great for me in the past. I take the whole dose at night (not like the directions say) and don't have the bad side effects that go with it. The memory stuff I just blame on old age and laugh it off. He started me on the pred at 60 mg for 5 days. Guess everyone should not get between me and FOOD for a while. (That's the part I hate about the pred). But I won't have any wrinkles for a couple of weeks. ;;D Hugs BD |
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Title: Re: I'm back on Topamax.... Post by clusterwife on Mar 13th, 2007, 9:24am You hang in there girl! Hope you can get some relief soon! Leah. |
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Title: Re: I'm back on Topamax.... Post by UN solved on Mar 13th, 2007, 12:50pm Wow :o I wouldn't go back to that hospital ! Sorry to hear the DHE didn't do better. Goodluck w/ the Topo ! PF Wishes UNsolved ( 60mg a day ... better get the snacks ready ! ;;D ) |
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Title: Re: I'm back on Topamax.... Post by rbmb on Mar 13th, 2007, 7:46pm Barbara, I've been using DHE for quite a while now and my experience has been that it's great for stopping a HA once it starts but I've yet to have it stop a cycle.....the HAs come right back the next night. A pred taper with lithium or topomax or some other preventative seems to be the trick. The first time I used topomax it stopped the HAs for a month or so and I thought it was a wonder drug until it quit working. The side effects are pretty bad at first (as you know) and about the time you get used to those, it seems to lose its effectiveness. It sounds like you are having a rough time.....I hope the treatment program they've got you on gives you some relief because we all know these HAs are no fun at all. Rich |
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Title: Re: I'm back on Topamax.... Post by E-Double on Mar 13th, 2007, 9:13pm And just in time for you to crunch numbers ;) Wishing you a break!!! :-* |
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Title: Re: I'm back on Topamax.... Post by BarbaraD on Mar 14th, 2007, 6:59am So far so good..... I've actually gone two days without cafergot.... don't know if it's the pred or topamax, but except for shadows (which the red bull or coffee gets rid of) I'm about pain free. And I'm sleeping at night.... Yesterday I actually got out and saw clients all day. I think I'm on the road to being human again... Hugs BD |
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Title: Re: I'm back on Topamax.... Post by Gator on Mar 14th, 2007, 7:25am Glad you got it back under control. Hoping it stays that way. |
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Title: Re: I'm back on Topamax.... Post by BarbaraD on Mar 15th, 2007, 7:05pm So far so good. I'm having a little sleepy feelings during the day, but am "ignoring" them cause I'm NOT hurting. This is since Monday I've been pain free and that's wonderful right now. I had a headache yesterday, but it was a "normal" everyday headache that aspirin would cure. Didn't even know how to act (it was from looking at the computer all day - I actually worked 12 hours straight). I've gotten more done this week than in the last month. Keep your fingers crossed that the topamax keeps working. And if I ever decide I dont' need it again - someone KICK me! this starting over is the pits. Hugs BD |
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