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Kevin_M

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withered branches grow
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Re: Starting Topamax as a preventive
Reply #25 - Oct 20^th, 2012 at 8:40am

It looks like this cycle has become manageable with the Topomax helping.

Stay in touch with your doc on its usage. There can be times within an episode when the hits seem to be putting in their maximum effort. Fluctuation of intensity and frequency that can result in breakthoughs.

Before ever thinking, "The Topomax stopped working!", remember that since the cycle can fluctuate, so can the preventative. A small tweek could be necessary for a short time, and reduced when not needed with a cooperative doc, who SHOULD understand this.

Stay a step ahead, keep your on-top-it momemtum and press the advantage when needed. Good news overall and good job.

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fun2drum

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Re: Starting Topamax as a preventive
Reply #26 - Nov 21^st, 2012 at 9:38pm

It's been a while since I reported last, but now things have changed a bit. I've made the decision to reduce and eventually stop the Topamax. It does work well for CH control but other side effects have been coming into play. I do sales presentations for a living and I now have random difficulty putting thoughts into words. That doesn't work. I'll try keep you posted on how things go as I reduce the dose over the next weeks.

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Gary
A drummer with a headache.
Western NC - USA

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Tim Cobb

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Re: Starting Topamax as a preventive
Reply #27 - Nov 23^rd, 2012 at 9:15pm

Over the years I have had different responses to topamax some good some bad. A couple years it broke the cycle within a few weeks I was able to quit taking it and went months in remission, when I tried using it as a maintenance drug I always kept a low grade headache I guess it was a "shadow" now I know. This year I have had CH's since May and they went ballistic about a week ago started Topamax in June and started varapamil last week. Anyway the topamax has been a friend and a demon so I wonder if quiting it completely might have caused some of the problems I had with it later. Maybe a 25 or a low dose as a maintenance might give you a cure.

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Batch

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Control The Beast With
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Re: Starting Topamax as a preventive
Reply #28 - Nov 24^th, 2012 at 9:51am

F2D,

See your doctor about a lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D. 25(OH)D is a metabolite of vitamin D3 and the serum concentration of this metabolite is used to measure vitamin D3 status.

The normal reference range for this lab test is 30 to 100 ng/mL... If your results come back less than 30 ng/mL... you're vitamin D3 deficient.

If this is the case, try adding the anti-inflammatory regimen with 10,000 IU or more vitamin D3 to your daily supplements and see what it does for invigorating your thinking processes and presentations.

You can find the details at the following two links:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Shoot me a PM if you have questions.

Take care,

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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AppleNutClusters

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Re: Starting Topamax as a preventive
Reply #29 - Nov 25^th, 2012 at 10:21am

Good news on the Topamax. I had results from it as well... about a 50% reduction in HA's when my doctors took me off of it. (Both neuro and PCP agreed that a 60 lb. weight loss within two months was too much.)

I also suffered through the same side effects you mention--inability to find the right word, taste changes, and clumsiness. Lord, I could not walk across the room without tripping and putting together an IKEA shelf was torture! I dropped that stupid wrench about 50 times. Angry

But after a month or so, the only side effect that still plagued me was the weight loss and GI problems. I'd still be on it if I could.

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fun2drum

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Re: Starting Topamax as a preventive
Reply #30 - Dec 21^st, 2012 at 10:21am

Thanks for all the encouragement and tips. I've been very busy with work the past month and it's been a while since posting, so here's an update: No Topamax since my last post and my taste is back, my ability to communicate is back, and I didn't even realize how little energy I had until now. The CH's are down still. Remission? Not quite. Still having one or two a day and I'm on the road a lot in sales so oxygen isn't an option in those cases, but the intensity is very light by comparison to before the Topamax. I am still taking D3 supplements and drinking a lot of fluids which seems to help. I think the Topamax at least broke the endless cycle from Hell I was going through. I still have refills on hold and I'm keeping some on hand in case things get worse.

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Gary
A drummer with a headache.
Western NC - USA

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JHK07

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Re: Starting Topamax as a preventive
Reply #31 - Dec 21^st, 2012 at 11:04am

I have been on Topomax (topamariate) for years. 4 ish I'd say. you can tell I keep a good headache journal.... hahahaha

I don't even know what my dosage is, not over 100mg. I take it before bed.

For what it is worth, it took a Very Long Time for the side effects to "wear off". Mostly I was cold/ chilled and had tingling in my fingers. If I am not as sharp as I used to be, I blame it on age (42) and doing the same ducking mindless job for the last 10 years. I am a purchasing agent.......

I also take some Wellbutren if that matters, and drink lots of beer and 7 and 7.

I get blood work done to make sure the topomax is not killing my livers. Yes, when you drink as much as I do you get 2.

Merry Christmas.

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vekilla

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Re: Starting Topamax as a preventive
Reply #32 - Jan 29^th, 2013 at 10:13am

I am on Topamax 150 MG a day to prevent CH. When I began I started at 25mg and worked my way up over 8 months and suffered many side effects during that time, including:
extreme memory loss, tingling arms and legs, appetite lose, fatigue. And you must rememeber that it decreases the effectiveness of birth control while increasing the chance of birth defects!

I am also on Verapmil 180MG to prevent CH.
much easier to tolerate. was only lightheaded for the first week and if i take a does an hour or 2 late during the day.

When I experiance a headache: Imitrex 100 MG and 2 excedrine are my first line. They take about 30 mins to kick in but generally work. I look forward to the imitrex tingle because you know it is working. I MUST pair imitrex with SOME sort of pain reliever such as excedrine or naproxen b/c imitrex has no pain relieve in it.

I hope my year of suffering and medical exploration helps someone!!! Good luck everyone!

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Guiseppi

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Re: Starting Topamax as a preventive
Reply #33 - Jan 29^th, 2013 at 10:41am

Welcome to the board Vekilla, what part of the world do you live in? Your medicinal regimen is sorely lacking and reflects a doctor who knows very little about treating CH. Let us kn ow where you're from, maybe we can refer you to a doc who knows some of the more modern treatments available. For now, start with this:

Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

This link will show you how to get set up with welding oxygen:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. As you have already discovered, the pill form generally works too slow to be effective for CH’ers.

Follow this link to the medications section of this board and read the post Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com

I'm so glad you found us, let's get you some effective treatments to put the beast back in his hole!

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Mike NZ

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Oxygen rocks! D3 too!

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Re: Starting Topamax as a preventive
Reply #34 - Jan 29^th, 2013 at 1:33pm

vekilla wrote on Jan 29^th, 2013 at 10:13am:

When I experiance a headache: Imitrex 100 MG and 2 excedrine are my first line. They take about 30 mins to kick in but generally work. I look forward to the imitrex tingle because you know it is working. I MUST pair imitrex with SOME sort of pain reliever such as excedrine or naproxen b/c imitrex has no pain relieve in it.

It sounds like you are using imitrex tablets, which is why it takes 30 minutes to kick in. The imitrex injections are a lot more effective, taking about 5 minutes to kick in saving you a whole lot of pain.

The excedrine tablets contain paracetamol, so be careful about using too many of these as it is very easy to overdose with potentially lethal results. Also if you're using them more than 10 days a month you are likely to be also getting rebound headaches. Using the injections means you don't need to take them.

Also look at using oxygen (read info on the left). This can kill off a CH for me in about 5 minutes with 25lpm and a non-rebreather mask.

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Tim Cobb CH.com Junior Offline I Love CH.com! Posts: 41	Re: Starting Topamax as a preventive Reply #35 - Jan 31^st, 2013 at 6:58pm I use O2 at 15 and it works in 5-8 min.
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ndhillst

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Re: Starting Topamax as a preventive
Reply #36 - Feb 7^th, 2013 at 9:09pm

I took Topamax at 100mg/day. It was brilliant (no headaches of any kind) except for my side effects - stupidness, weight gain, everything tasted warm and odd in my mouth, gas and constipation. For me, I tried it for 4 weeks but the side effects were getting worse, not better. So far though, it is the only thing that has actually worked 100%.

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Tim Cobb CH.com Junior Offline I Love CH.com! Posts: 41	Re: Starting Topamax as a preventive Reply #37 - Feb 10^th, 2013 at 12:57am Stopped the topamax still taking varapamil and D3 at 20000 a day been pretty much CH free had 3 in the last 3 weeks so much better
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