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Topic: The topomax was not the answer (M) (Read 378 times) |
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WifeofCHSuffer
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The topomax was not the answer (M)
« on: Feb 8th, 2005, 8:36am » |
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My husband was on 150mg topomax and nothing helped. Now the Neuro has prescribed Depakote for him to try and let him know when we see him next week how it is going. I called yesterday because he is extremely depressed and the headaches were not getting any better. I was hoping that they would increase the Topomax and give him an antidepression drug but not the case. Another question for the Neuro next week.
Anyone taking this? I am not sure the dosage as I have to pick up some samples at lunch time for him. I decided we are no longer going to spend $30 every time they want to try something different, either samples that are free or nothing at all. I have a medicine cabinet full of Vermaphil, Topomax, Allegra, Nasonex and others that don't work for him. I hate spending all that money when something may or may not work. Is it just me?
I read up on the Depakote and it says may make him tired, anyone have that side effect and if so how long before you body got use to it?
Thanks,
Cathy
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Wife of CH sufferer. Supporter and mother of two children.
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Lobster
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Re: The topomax was not the answer (M)
« Reply #1 on: Feb 8th, 2005, 10:58am » |
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100mg Topa does if for me. The only thing I do differently is that I jumpstart it with a quick pred taper... say 4 days at 60/40/40/20. I start the Topa on the same day with pretty good results.
You do not want too much Topa... it has a window. Exceed a certain amount and it becomes useless or perhaps triggers.
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WifeofCHSuffer
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Re: The topomax was not the answer (M)
« Reply #2 on: Feb 8th, 2005, 11:29am » |
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he has not been given Pred as a taper nor has that been even discussed yet. We see the doc on the 16th poor man has no clue how many questions we have. I have two sheets so far! It is going to be a long appointment, I hope he has no where to be at 5 because he is not going to make it!
I wish the 100mg of Topa worked for him but no such luck! I wish something worked but so far the only thing that is a for sure is Relpax!
Cathy
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E-Double
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Re: The topomax was not the answer (M)
« Reply #3 on: Feb 8th, 2005, 7:10pm » |
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Depakote did squat for me another dunce like feeling but not near as bad as Topadumba$$ as I called it (for me).....
Still looking for a cocktail that will work......
The doc should put him on some type of stroid as an agent to give some sort of relief while the meds are reaching therapeutic dosage...
Hang in there!
E
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Re: The topomax was not the answer (M)
« Reply #4 on: Feb 9th, 2005, 1:11am » |
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Sucks that Topa wasn't the answer. Maybe the Depakote will work for him. Everyone is different, so you really can't go by my results. I took Depakote up to 1500mg without any effect on the clusters. Unfortunately, the world of CH prevention is strictly trial and error. If there were any definitive answers, there'd be a lot less suffering going on around here.
You've mentioned your husbands depression frequently. Has the doctor done a depression inventory on him? Absolute first thing I had to do (besides all the damned insurance and medical history forms) before even seeing my second neuro.
I am so sorry you have to be a part of this. You're a good woman. Your husband is a lucky man.
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WifeofCHSuffer
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Re: The topomax was not the answer (M)
« Reply #5 on: Feb 10th, 2005, 11:12am » |
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Thanks for the feedback on the Depakote, I am hoping it works for awhile. Right now since he has only been on it for a day and half he has had an upset stomach he feels nasuated all day.  He has not done that but he feels like he could. UGH!
He said if it gets rid of the headaches he can deal with that until his body gets use to it! I feel the same way.
Did you guys experience this? What did you do to stop it?
Thanks for the words of encouragement and support, you have no idea how awesome it is to be on this site and rant/vent and get help.
Cathy
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Margi
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Re: The topomax was not the answer (M)
« Reply #6 on: Feb 10th, 2005, 11:23am » |
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Cathy,
why won't you and your husband try the oxygen? It's so much easier (no side effects) and such a great abortive.
Just wondering. When you first came here, a lot of us suggested you request it and I've never seen any response about it.
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WifeofCHSuffer
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Re: The topomax was not the answer (M)
« Reply #7 on: Feb 10th, 2005, 11:55am » |
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Margi,
Tim did get O2 but it was given to him through the nasal passage delivery not the mask. When we go in on Wednesday we are going to ask about it and why he did not get the mask. Believe me Margi, it is on at the top of my "Why did you not do this" list.
Tim said to me last night I hope you are going to be nice to the doc and not yell at him, I said no not yell i just want an explanation. From all the research i have done courtesy of all of you I want to know why he is doing things one way and why others do it another way.
Cathy
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sandie99
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Re: The topomax was not the answer (M)
« Reply #8 on: Feb 10th, 2005, 1:38pm » |
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Topomax didn't work with me either... 
I understand very well how you feel... Meds aren't cheap. But the thing is that the only way to find out what works for your husband's CH is for him to try. I'm on preventative 6 or 7 (lost count)...
I do hope that depakote works! 
PFdays,
Sandie
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Re: The topomax was not the answer (M)
« Reply #9 on: Mar 15th, 2005, 4:23pm » |
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Sorry guys for bringing this post back to life but I found it interesting. I just started taking this drug and ever since, I have been getting hit hard at night. I mean real hard. I was on the verap. but it wasnt working in the daytime. But was working great at night. Now no verap no sleep. Still having headaches in the daytime. mostly bad shadows. What are yalls experinces with this drug.
PS: It does make everything taste like ass! 
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unsolved1
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Re: The topomax was not the answer (M)
« Reply #10 on: Mar 15th, 2005, 4:51pm » |
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Topamax gave me kidney stones ... twice. The Depakote didn't do anything. 
Unsolved
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zrmulcahy
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Re: The topomax was not the answer (M)
« Reply #11 on: Mar 15th, 2005, 7:38pm » |
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Has it been just Topomax and just Verapamil? My doc says he's seen great success with a combination of Verapamil and Topomax when Verapamil doesn't work alone. Something to ask about if it's just been one drug at a time. Of course, don't try this without asking the doctor first.
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