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Samiam
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I have a serious ? about Topamax
« on: Mar 17th, 2007, 3:49pm » |
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I see the neuro on Thursday. I will be in my 4th week of my 6 week cycle if all goes to plan. I can't live on abortives (which I have in the pass) We are going to talk about topamax since this is one that I have never tried. Here are my questions.
Is this a drug that has to be taken everyday for life or can this be used for cycles?
How long will this take to get into you system?
Can you also use abortives like Imitrex if a cluster breaks through?
Biggest question will this extend your cycle. So far just doing abortives have not done this to me.
Verapimil I know is the first course of treatment but I believe that this will interact with my thyroid meds. Not to mention in the pass it hasn't worked.
I know many don't like it but for me if I have to be stubid for 6 weeks so be it. I also seem to be the type that I don't need high does of meds in order for them to work.
Sami
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Rosybabe
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Re: I have a serious ? about Topamax
« Reply #1 on: Mar 17th, 2007, 5:21pm » |
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according to my Dr, depends of how long your cycle is to determine for how long you need to take it, also it needs to start low and then increase and then decreased before stop taking it...
also you can take it along with your abortives (O2, Imitrex, Zomig)..
the reason I am not on Topamax is because it's known to decrease the effect of the pill, so you can get pregnant while in Topamax, also if you are pregnant and you use topamax you can cause serious damage to the baby..
other reason is because I had suffered from kidney stones in the past and they had been some researches who suggest that Topamax may cause you to get kidney stones...
BUt, as always, If you get to feeling better from your CH's is worth the risk, go ahead!
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Samiam
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Re: I have a serious ? about Topamax
« Reply #2 on: Mar 17th, 2007, 7:18pm » |
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Thanks for the advice. One I can no longer have babies when my second was born they told me that if I didn't have my tubes removed there would be no one to take me throught another High Risk Pregnacy due to how bad my cluster were. So not more kids. They wanted to abort my second and I had to have an MRA in order to carry him to term.
Right now I don't have much of a life. I could do this for 3 more weeks but what happens when or if I go longer or I don't get my 5 yr remission. I have to have a better course of action so that when or if they start again we know what to do.
I really can't eat, I have shadows all day and if it's not a shadow then it's a cluster. I can't really go to many places because I don't want to many people knowing about the O2 and I can't keep using the abortives so I'm stuck in the house other then quick trips somewhere with hubby.
Sami
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Brew
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Re: I have a serious ? about Topamax
« Reply #3 on: Mar 17th, 2007, 7:28pm » |
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on Mar 17th, 2007, 7:18pm, Samiam wrote:| ...what happens when or if I go longer or I don't get my 5 yr remission. |
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It's called "Welcome to MY world." You need to develop coping strategies that will lessen the impact of the beast. It's "Samiam vs. The Beast," and right now, it sounds like the beast is winning. Don't ever let the beast win.
Quote:| I can't really go to many places because I don't want to many people knowing about the O2... |
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Your choice. When you stay in all the time because you don't want people knowing about the O2, the beast wins.
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Samiam
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Re: I have a serious ? about Topamax
« Reply #4 on: Mar 17th, 2007, 8:44pm » |
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I know your right. Hubby said he is loading up the O2 in Mac Daddy and we are going out tomorrow. Even if it's just to Walmart. We can keep the O2 in the truck and if I need it it's there if not then I'm one up.
Brewcrew your great for the kick in the ass when I need it.
Sami
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Rosybabe
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Re: I have a serious ? about Topamax
« Reply #5 on: Mar 17th, 2007, 8:45pm » |
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I understand, you don't want to go out because you are afraid to get a bad one away from your safe spot: your home, but you are letting CH rule your life...
I am wondering if your are having rebound headache..
just yesterday I had rebound headache almost all day , I did not take anything but coffee for it until late when I took a Cafergot because I did not want the headache to get out of control in the middle of my cousin's dinner party at Outback, the all over headache went away but I started feeling like a electric shock in the back of my head, I resisted and I stayed until the end of the party, trying to be involved in the conversation...
I know it is hard, but you most try to get your life back..
Have you try to change your abortives?
maybe to much Imitrex is causing the rebound..
what about a double expresso? a Red Bull?..
what about a nice warm bath? a relaxing massage from your hubby? any coping techniques can be useful right now...Hang in there it is almost over!!!...the CH always peak before they start to go down and yours sound like they are already peaking so relief is under way..
Best wishes to you Sami!!
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Samiam
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Re: I have a serious ? about Topamax
« Reply #6 on: Mar 17th, 2007, 9:07pm » |
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HiYa Rosybabe,
This isn't rebound. I only take 1 imitrex a day at that's at night unless I get pounded. Last cycle I was up to 3 sometimes a day for 6 weeks. Rebound H/A's are different then clusters I know because I had them when I was on 150 fiornal in 3 weeks way in the begining. Rebound tend to be an all over h/a that's like a vice over the top of your head. These are shadows. hanging right by my temple and the base of my shull on my left side.
If the Imitrex wasn't so expensive I would be using them again when needed but this time I'm unable to get the samples that I needed. My Bestfriend who also got migraines even would get her doctor to write a script for her and she would get them for me also. So there was never a worry about running out. But her insurance changed.
I would love to gulp down a red bull or a strong cup of coffee but I can't have caffiene anymore do to the side effects it produces on me. What makes this hard is my thyroid meds are off. I take a T4/T3 med which means I already get a jolt when I take the T3. So adding in more caffeine would then product panic attacks on me. Which happens since the thyroid meds went too high.
As for getting out. My ass is dragging. I have just got over the flu and I'm just getting over getting Mono on top of that also which has me worn out when all this started.
I've had these now for 28 yrs. It's just when I was in remission and was rippped out of a 5 yr break does it really do something to ya.
And your so right I have gotten cluster in restaurtant where I had to go into the bathroom and give myself a shot, I have gotten them at a party that I had to out in my car and lay on the seat (this was before meds) and throw my guts up. I have gotten them in labor with my first son. Talk about want to kill someone. Believe me there hasn't been a place that I haven't gotten them. So yes I don't want to repeat this. I was younger then not that it hurt less you just could handle it better. I'm worn out. Mentally and Physically. I'M TRIED OF BEING SICK! This has been since the begining of Jan with one thing or another. Cluster right now are only part of the problem.
Sami
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Hikerguy
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Re: I have a serious ? about Topamax
« Reply #7 on: Mar 17th, 2007, 9:08pm » |
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The first time i took topa it knocked out the cycle within a couple wks (good call on doc's part)following cycle started topa prior to cycle aborted entire cycle  got hit feb23rd with renegade cycle and have been back on topa for 3wks and still getting hits....as for the triptans my dr always gives me topa and trex but i dont like trex.....and then there is side effects which i dont know if i can continue using it anymore with my job...looking into indole rings next........my dr puts me on 25mg 2x for a wk then 100mg 2x that has worked well till now this time the cycle is only slightly diminshed...normally I would take it untill a couple wks after cycle would end.
I hope that helped some
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Gator
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Re: I have a serious ? about Topamax
« Reply #8 on: Mar 17th, 2007, 10:08pm » |
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To answer your question, Topamax can induce cluster remission in 1 day to 3 weeks with an average being 1.4 weeks.
The way Dr. Rozen recommends is that you start at 25mg and go up 25mg every 5 days until you hit 75mg. You should stay at 75mg for a several weeks before deciding if you should go any higher. The max recommended dose is somewhere between 200mg and 400mg.
There appears to be a therapeutic window for Topamax in clusters. Doses beyond that range can worsen attacks. If this happens, lowering the dosage should improve the effects. This therapeutic window is different for different people.
You'll find this information and more here:
http://www.brightok.net/~mnjday/chtherapy.pdf
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Samiam
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Re: I have a serious ? about Topamax
« Reply #9 on: Mar 17th, 2007, 10:28pm » |
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Hi Gator,
I guess what I wanted to know is will one remain in remission when they wean off. Or is this just while on the meds? Or is this a med you don't wean off.
For all my years that I have been a cluster head I never took meds all year long I only took meds while in cycle. Then you get that feeling that your cycle has broken. Can't explain the feeling you just know.
I was afraid with the way some take is that this will just screw with your cycle and once your off of it you will get hit again.
As for being dupey while on this.....well I'll just get out my blonde wig again so that will explain everything......LOL
Sami
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Samiam
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Re: I have a serious ? about Topamax
« Reply #10 on: Mar 17th, 2007, 10:31pm » |
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That helps hikerguy. Thanks I'm hoping I will find something that works someday.
Sami
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Gator
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Re: I have a serious ? about Topamax
« Reply #11 on: Mar 17th, 2007, 10:57pm » |
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When taking Topamax as a CH preventative, you take it like any other prevent. Ideally, you ramp it up with a pred taper at the beginning of the cycle and then taper off once your cycle is over. If it knocks out the attacks in a week, but you normally have a 6 week cycle, then the attacks will probably come back if you taper off before the normal end of your cycle. The only way to know for sure would be to try tapering off and see.
What I've seen recommended is when you get to the end of your cycle, once you go 14 days without hit or shadow, you start tapering off. Some people here start tapering once they go seven days without hit or shadow. Whatever works for you. Either way, if the hits start coming back, then you taper back up for a while and try it again later.
Most of the people you hear about being on it all year round around here are chronics. I don't think anyone in their right mind would want take this stuff year round for no reason, but then again, when you take it, you're not in your right mind, so...
As for the blonde wig, they don't call it Dopeymax for nothing.
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Re: I have a serious ? about Topamax
« Reply #12 on: Mar 18th, 2007, 6:16pm » |
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The more you take, the dumber you'll be. 
And we can't let this thread die without mentioning that Topamax can cause KIDNEY STONES !! ((Damn that hurt a little !))
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BarbaraD
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Re: I have a serious ? about Topamax
« Reply #13 on: Mar 19th, 2007, 6:25pm » |
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Ok, Topamax has been my miracle drug so .....
Back in 99 my neuro started me off on 75mg for a week and then upped it to 150. Over the years we've regulated the dose going as high as 400 at times (I wouldn't recommend that dose). I always take the whole dose at NIGHT before bed and never really had all the "dopey" side effects that others experienced.
Over the years I pretty well stayed in remission with break-thrus occasionally (not really real bad, but enough to let me know I still had the beast with me). But it gave me back a life and I give it 5 thumbs up.
If you've been reading the board lately you know I've been going thru a really ruff time. About a year ago I decided I'd had enough drugs and stopped everything. Not a good idea. Last week I went back on Topamax (75mg) Haven't had a headache to speak of since. Still have the residual pain, but I can live with that. I told my neuro if I ever decide to get off it again - Hit me with a baseball bat.
There are some side effects (short term memory loss, constipation, and some others). Live with that or the pain. If you're chronic - it's a full time med. If you're episodic - I don't know - never been there with it.
One of the side effects on a high dose is depression and if you experience this you might think about an antidepressant (I take trazadone with the topamax).
My maintenance dose has always been about 100mg a day unless a get a bad breakthru and then I up the dose until it passes - then go back down.
Verap and Lithium are a LOT cheaper and if they'll work you might want to go that route first cause Topamax is expensive as hell.
Any more questions about it - pm me or ask. LIke I said, I've been on it since 99 and swear by it.
Hugs BD
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Samiam
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Re: I have a serious ? about Topamax
« Reply #14 on: Mar 19th, 2007, 8:02pm » |
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Hi Barbara,
Yes I have been following your story. I have emailed you and PMed you but then again I'm not sure if I did it right. I've said a prayer for you and all that need it.
I'm in week 4 which will turn over on Sat. I'm not sure if I should see where this leads me or if I should give it a try. If I could just know that I had enough Imitrex to carry me over my cycle I think I would feel a bit better. But the worrying about what happens after my 10 days of Imitrex is up is what is half the battle. Just give me the tools that I need and I can fight anything.
I'm going back in remission this will happen. It's gotta happen. My family needs me and I need to be normal mom again.
Sami
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firecracker7481
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Re: I have a serious ? about Topamax
« Reply #15 on: Apr 3rd, 2007, 7:49pm » |
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Sam~
I am an eposodic suffer, my cycles like yours normally last about 6 weeks but mine seem to come about every 2 years or so these days.
I just recently ended a cycle thanks the Imitrex shots and Topamax. My Dr. started me off at 25 mg going up 25 mg every 3 days until I reach 100 mgs...Like Barbara I took this all at night...after about a week I had to be bumped up to 125 mg....and I am now being weened back of the meds as I am now in remission. Should I go back into cycle they will bump my meds back up...but right now I am feeling great...
The only neg. side effectives that I experienced, is that you should not mix Caffiene with Topamax for some reason. This combo made me extremely queasy during an attack. As for the dopey side effects, I did experience a little of that and it was literally the strangest thing. It was not the big things that I would have trouble with it would be my remember my roommates name or just silly things. Once I adapted to the meds a little bit that started to go away ( i am also tapering down so that could help as well).
All in all, I have lost a little a weight with the med (who can complain about that) and my h/a have left significantly sooner and have allowed me to still live a somewhat normally life in the mean time...If it is an option for you I would seriously consider it with your dr. it has done wonders for me...I think that and the imitrex is what kept me from having to take a leave of absence from work this year. (this is what I have to do in years past)
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nani
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Re: I have a serious ? about Topamax
« Reply #16 on: Apr 3rd, 2007, 11:07pm » |
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on Mar 17th, 2007, 7:18pm, Samiam wrote:One I can no longer have babies when my second was born they told me that if I didn't have my tubes removed there would be no one to take me throught another High Risk Pregnacy due to how bad my cluster were. So not more kids. They wanted to abort my second and I had to have an MRA in order to carry him to term.
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What?  I'm confused, Sami. Are you saying that the pregnancies were high risk because you have clusters? How so? This is the first time I've ever heard anything like this.
pf wishes, nani
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Samiam
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Re: I have a serious ? about Topamax
« Reply #17 on: Apr 5th, 2007, 8:24pm » |
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Hi Nani,
Yes I was high risk because of the clusters. It seems at that time they were really worried about a stroke due to a very high BP along with lost of vision each time I would get the cluster. This all passed when the cluster ended. I also refused to take meds during this time. When I had the MRA they were a bit calmer.
As for the Topamax. I'm off of it. I got up as far as 75 mgs and my head felt like it was going to blow off. Nothing I did would stop the pressure. Also about 7 days in I got really upset due to the stubid things I was doing. I couldn't remember anything nor did I seem to have any common sense. Now this may not have happen to others but for me it did.
What is working for me is Imitrex everyday and O2 along with Klonopin @ bedtime.
Sami
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sailpappy
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Re: I have a serious ? about Topamax
« Reply #18 on: Apr 6th, 2007, 12:24am » |
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 Samiam, this meication helps a lot of suffers of all types of chronic pain, not just clusterheadaches, I know people with MS that take it for the pain relief they get, and one guy I know was in a horrible accident in his truck, he has to walk with 2 canes, but you can see the pain in his hips, he takes it and it helps, but he's like me on Topomax, a complete zoned out. stumbling idiot with little zombie thrown in, so he only takes it when he can stay at home for a few day at a time, it never helped my chronic attacks at all, and as BrewCrew said, you have to develope coping skills to deal with this issue, because it isn't going away, unless you become the next miracle on Cluster Hill!
Look Sweety, I get no less than 7 or 8 hits a day, I either get the garden hose or go inside to the shower and place the nozzle on mist then soak my head down non stop on the right side, you know everywhere it hurts, the cheeck bones, the teeth, the jaw bones, the forhead, eyes and the top middle right side of my skull and the back of my neck on the right side, water as cold as you can stand,walk, cry, yell, do what ever you have to do but, don't take that water off until your getting chills or goose flesh, so bad that you have to go get warmed up, I find that letting the cold water run over my wrist too helps speed things up.
I do this everyday at lest 7 times, and after so long I can keep the bad thoughts from bursting out verbally too, that helps the people around you not worry so much for you. Good Luck, maybe you will be OK on topomax and it will be your golden bullet and stop your cycle in its tracks, so glad I don't have to deal with cycles, If this ever stopped for even a month and then started back up I think I just couldn;t take it! Pappy
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