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Topic: Topomax account. (Tiannia's Story) (Read 477 times) |
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Tiannia
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Topomax account. (Tiannia's Story)
« on: Jan 22nd, 2004, 1:15pm » |
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ok Figure I'll keep a running account here.
Started the Topomax Tuesday night. 25 mg each night for a week then to go up to 50 mg at nigh until I see the doc on Feb 12th. I am still taking 80 mg inderal for the next 30 days as well and then we can see about getting me off the inderall if the Topomax helps.
Bad part is that I ended up with food poisoning Tuesday afternoon and ended up in the er yesterday afternoon on an IV for about 5 hours cause I had passed out cause I could not even keep fluids down. Was getting hit pretty damn hard and have not noticed any difference at this point in the amount of hits and or how hard they are coming. B ut I do notice that words do not come as easy as they used to. It is like I have a running thought but as I am typing and I get to a point if I hear someone else talking about something that I know something about I will forget what I was typing and it will take me a minute to get back into my train of thoughts.
So I am starting now to make sure that I keep lists and notes of everything. Thanks for the tips guys.
Tiannia
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Edski_1
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Re: Topomax account. (Tiannia's Story)
« Reply #1 on: Jan 22nd, 2004, 1:56pm » |
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I've noticed the words issue with "el Dopa" for a few days each time I've upped the dose with Topamax...
Seems to go away...and isn't really noticeable. And it's done a pretty damned good job with the pain!  
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toader
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Re: Topomax account. (Tiannia's Story)
« Reply #2 on: Jan 22nd, 2004, 5:37pm » |
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Wow, very sorry to hear about your er trip, Tiannia - 
Hope you are feeling better from that soon.
If you are making lists, may I suggest the following:
http://tinyurl.com/3ee6j
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Prense
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Re: Topomax account. (Tiannia's Story)
« Reply #3 on: Jan 22nd, 2004, 5:42pm » |
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You might have better success by splitting your 50mg dose in half...ie, 25mgx2/day. It might help with the side effects when you get there. As always, talk to your doc before altering prescriptions...
Just tossing out an idea...
Chris
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thomas
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Re: Topomax account. (Tiannia's Story)
« Reply #4 on: Jan 22nd, 2004, 5:50pm » |
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Keep us informed, good luck...... sorry to hear about the food poisoning........ 
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Tiannia
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Re: Topomax account. (Tiannia's Story)
« Reply #5 on: Jan 22nd, 2004, 6:07pm » |
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on Jan 22nd, 2004, 5:37pm, toader wrote:Wow, very sorry to hear about your er trip, Tiannia -
Hope you are feeling better from that soon.
If you are making lists, may I suggest the following:
http://tinyurl.com/3ee6j |
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Thanks Toader. I am so glad that you are thinking of me. 
I am sure that it will get better. Just have to get over the nothing wants to stay with me. Trying to stay politically correct 
Anyway.... At least the biatch at work doesn't bother me as much today 
Tia
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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Tiannia
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Re: Topomax account. (Tiannia's Story)
« Reply #6 on: Jan 23rd, 2004, 3:45pm » |
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ok have gotten away from the spacey feeling now that I am on day 5. at the 25 mg. But I still feel a little shacky. Is there something that I can take that will help with this? I thought I saw somewhere that someone said there was a vitamin suppliment that would help with this?
Thanks
Tia
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Edski_1
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Re: Topomax account. (Tiannia's Story)
« Reply #7 on: Jan 23rd, 2004, 3:54pm » |
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Shaky or tingly?
90 mg of potassium is taking care of the tingly feeling. I suppose I've felt the fleeting shaky feeling come and go...I think it's from not eating too much. Especially since I've gone to 100 mg I've found my appetite has not been what it was.
Not sure if the K supplement would affect both side effects...
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| « Last Edit: Jan 23rd, 2004, 3:55pm by Edski_1 » |
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Tiannia
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Re: Topomax account. (Tiannia's Story)
« Reply #8 on: Jan 23rd, 2004, 3:58pm » |
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Right. I di dnot think about the eating thing. With still getting over the food poisoning, I am not eating right still and with the topomax I am sure that it is worse. But what I was trying to describe is like my arms are asleep. the mild pins and needles. So I will pick up potassium and see if that helps. I need to grab some more melatonin as well so it might be a good idea to grab some while i am there.
Thanks
Tia
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henzey
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Re: Topomax account. (Tiannia's Story)
« Reply #9 on: Jan 24th, 2004, 5:53pm » |
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Tiannia: Glad to hear that you are getting some good suggestions. I did finally start getting over some of the side effects after 2 weeks or so, but unfortunately I did not get over the impact on my personality. I sure wish it had made me as happy as Toader....instead, I took a major nosedive into a blue funk. I ended up having to get off of Topamax, but it clearly does help many CHeads, so hang in there for a while to see if things improve. Do drink LOTS of water.....more than you can almost stand. This is not just because of the kidney stone warning, but Topamax can really shut your digestive system down, especially if you are not eating much. I lost quite a bit of weight, which wasn't so bad, but then was hard to get my system straightened out.
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MarkV2
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Re: Topomax account. (Tiannia's Story)
« Reply #10 on: Jan 24th, 2004, 7:51pm » |
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Tiannia,
I'm chronic - had the same problems tapering up on topamax. I was already on verap and went on topamax in 25mg increments each week till I got to 100mg a day. I ended up getting a Palm pilot to be able to remember daily things like where I parked my car and if I drove to work or took the bus. I also had to read a paragraph about 3 or 4 times before I could comprehend what it said. Reading 1st grade level books to my younger son at night was easy, but I couldn't remember what I had read. It took me 3 months to get over these effects. I'm an engineer so it made dealing with this at work very difficult.
Its been almost a year now and the headaches are starting to come back. Not in full force yet, so the topamax is still doing something. In the meantime, I've noticed over the last year I can't handle stress as well as I did before taking topamax, I've never been as sharp witted as before, and I've been more down beat too, with some serious depressed states.
After a year, I'm about at wits end - the pain was controlled, but its been a serious emotional rollercoaster. Got an appt with the neuro for next week to make plans for trying another med.
I always rah-rah'd topamax when I was first on it because it helped with the pain so much. I wish everyone that can handle the topomax side effects the best. I'm giving up on it for now.
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Tiannia
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Re: Topomax account. (Tiannia's Story)
« Reply #11 on: Jan 27th, 2004, 4:43pm » |
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Well, I am not sure how much of an update I can truely give. I have felt worse before I have felt better. But I do believe that I am feeling better, as far as the CH's go that is. I have only had 4 bad ( Kip +8 ) HA since Friday. That is a great inprovement. So I have to say that something is working.
I can only hope that whenever my body decides to stop voiding food and such and I can settle down to some semblance of a normal life again and not feel so very crappy, that the HA will continue to lessen. I an supposed to go up to 50 mg tonight, but the GP wants me to wait a week and see if the nausia stopps. I dont know, Kind of want to go ahead and dose up and if I get more nausous then it wont be that big of a deal cause I will be use to it at this point.  
I'll keep you posted.
Tiannia
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| « Last Edit: Jan 27th, 2004, 4:44pm by Tiannia » |
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Tiannia
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Re: Topomax account. (Tiannia's Story)
« Reply #12 on: Jan 30th, 2004, 5:10pm » |
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Well my topomax trial is over. I just could not take the side effects. Yes it did seem to be helping the HA and maybe if I could have gotten to a point of taken higher end doases, then they might have actually gone away. But Here is an excert from the main message boards that explains whats been up.
Quote: Well a week later I was still getting sick all the time could only keep maybe one meal down a day but the HA where better. I was still getting woke up at 3am but it was not a K8 only about a K5-6. 20 hours after taking the topomax I was feeling better. but worse as well. I would usually get my 5pm HA - hit hard K8+. and my9pm HA. I decided to up to the 50mg like was prescribed on Wed night. And I was right back to where I was when I went to urgent care. Started vomiting again really bad. Felt like I could not breathe, stomach cramps again and such. So I called my doc and have stopped the topomax. I would rather deal with the HA then feel like this 24/7. Living with CLuster Headaches, is just that for me, living between the headaches. I refuse to live feel doped up and non functional all of the time.
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Good luck to everyone who can handle taking it. I was able to get my PCP changed over the the doc that Gregg recommended. It takes effect March 1st and I can go see him. This doc understand CH and so this I hope is a great step forward for me.
PF wishes to everyone.
Tiannia
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Prense
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Re: Topomax account. (Tiannia's Story)
« Reply #13 on: Jan 30th, 2004, 6:04pm » |
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That sucks! I had a truckload of side effects when I was on it, but never had the tummy troubles that you had to deal with. I hope you find something!
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henzey
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Re: Topomax account. (Tiannia's Story)
« Reply #14 on: Jan 31st, 2004, 10:21am » |
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I think that you and I had very similar experiences with Topamax....it would have worked if we could have stood it. That nausea stuff 24/7 is not fun. Hang in there!
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