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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Starting Topamax as a preventive

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Starting Topamax as a preventive (Read 10004 times)

fun2drum

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Starting Topamax as a preventive
Sep 23^rd, 2012 at 6:58am

I went to the doctor Friday and presented him with info I learned mainly from the forum. After discussing a lot of potential pros and cons he wanted to try Topamax first. That was fine with me because he's willing to change it if it doesn't work, and by the research I've done it looks like Topamax might be a good fit for me IF I don't have the memory loss side effect. That side effect apparently only occurs in a low percentage of people taking it. I've started with 50/day and upping to 100/day by the end of the week and see what happens.

BTW, on another topic, I told him what I was doing with the welders oxygen and he was quite amused. He actually told me that it was unlikely insurance would cover the much more expensive medical oxygen if he were to write a prescription because my blood oxygen levels were normal, but I should of course understand he couldn't recommend using non medical oxygen. He was smiling the whole time. It was hilarious.

Gary
A drummer with a headache.
Western NC - USA

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fun2drum CH.com Junior Offline I Love CH.com! Posts: 55 Marion NC Gender:	Re: Starting Topamax as a preventive Reply #1 - Sep 24^th, 2012 at 6:57am chirp, chirp, chirp, chirp (cricket sounds)
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Re: Starting Topamax as a preventive
Reply #2 - Sep 24^th, 2012 at 10:45am

Your doc is wrong about the insurance covering the 02. I had Kaiser, notoriously the most tight fisted of insurance, and they covered 100% of my oxygen. It takes a little perisistence...when you show them the math, a $200 imitrex shot to abort, or less then $1.00 for an oxygen abortive. And our arterial 02 levels have nothing to do with our need for 02. We still have SOOOOOOO much education to do in the medical field! Angry

As to the topomax, many here swear by it. The potential side effects are just that, potential. Some have posted that by taking the dose at night they mitigated most of the loopy side effects, again, in conjunction with your doc's instructions but worth asking if night time dosing is okay.

Joe

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wimsey1

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Re: Starting Topamax as a preventive
Reply #3 - Sep 24^th, 2012 at 11:45am

Topamax can work, although it didn't for me. Then again, not much worked for me....yet, here I am! The side effects did cause me to lose words, but they also helped me lose weight. It's one of the few preventatives that will do that. Good luck and let us know how you're making out. BTW, you do realize this is not a live chat site? blessings. lance

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fun2drum CH.com Junior Offline I Love CH.com! Posts: 55 Marion NC Gender:	Re: Starting Topamax as a preventive Reply #4 - Sep 24^th, 2012 at 1:22pm Just joking around with the cricket thing. My sense of humor sometimes doesn't carry over well into more serious web forums, yet I still can't seem to keep it from poking its head in and offending folks from time to time. Sorry.
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AppleNutClusters

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Re: Starting Topamax as a preventive
Reply #5 - Sep 24^th, 2012 at 7:23pm

I'm happy to chime in here with some Topamax (topiramate, if generic) info from my previous experience and also medical sources.

I recommend that you explore the potential side effects before asking other users about their experiences. I found that Topamax is one of those drugs that really acts differently from person to person, so someone else's experience is less helpful with this drug. That said, it still helps to know what the potential side effects (SA) are, so you can anticipate and deal with them.

For Topamax, these are the officially-reported SA's: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

. Doesn't mean that they're likely for YOU, just that they've been commonly reported by Topamax users. In most cases, these effects are still uncommon for the average user. It really is only a subset--particuarly those who don't gradually increase Topamax--who experience significant SA's.

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fun2drum

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Re: Starting Topamax as a preventive
Reply #6 - Sep 26^th, 2012 at 6:58am

I understand, Applenut. I actually did quite a bit of research here and elsewhere on potential side effects. There are some that wouldn't be acceptable, but those aren't very common. So far so good. I increase to 100/day today so we'll see how that goes. I'm experiencing a little weird taste in sodas but not too bad. I don't need to be drinking so many of those anyway. It seems that the past couple of days have been a little lighter in CH but I'm not sure at this point if it's the Topamax working or not.

Gary
A drummer with a headache.
Western NC - USA

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Starting Topamax as a preventive Reply #7 - Sep 26^th, 2012 at 8:19am Good luck with Topamax, may it do for you all you need it to do. It's a good med that has worked wonders for some. And for record, no one was offended. We'll let you know if you manage to bruise our sensitive collective feelings. blessings. lance
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fun2drum CH.com Junior Offline I Love CH.com! Posts: 55 Marion NC Gender:	Re: Starting Topamax as a preventive Reply #8 - Sep 26^th, 2012 at 3:07pm wimsey1 wrote on Sep 26^th, 2012 at 8:19am: ...And for record, no one was offended.... I'm very glad to hear that.
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fun2drum CH.com Junior Offline I Love CH.com! Posts: 55 Marion NC Gender:	Re: Starting Topamax as a preventive Reply #9 - Sep 27^th, 2012 at 10:52am I kind of feel like I'm living in slow motion at times. Like my head is a couple of steps behind the rest of my body. I hope that diminishes as I get used to the increase in dosage.
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fun2drum

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Re: Starting Topamax as a preventive
Reply #10 - Sep 28^th, 2012 at 8:43am

Please advise me here: At this point I'm reducing back to 50/day which I can tolerate and still has some preventive effect with me. I can't do my job with the higher dosage. Maybe I should settle in at 50/day for a month or so and THEN go higher? Anybody with similar experience? Am I at a dead end here or should I go forward at the lower dose and progress upward at a slower pace? On a positive note I will say that it seems to have more of an impact on the CH as the dosage increases. Am I just not giving enough time for the dopey feeling to wear off? I've read some reviews that said it takes about 8 weeks for that to happen, but I'm at the beginning of about a 2 month busy season at work and I can't afford to be feeling loopy for 8 weeks. I guess my question is should I cut back to 50/day until business cuts back and then increase, or taper completely off and start back from square one?

Gary
A drummer with a headache.
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fun2drum

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Re: Starting Topamax as a preventive
Reply #11 - Sep 28^th, 2012 at 1:37pm

Update: I just talked to the doctor on the phone and was told I could taper back the morning dose and go heavy at night or just take it at night only if it totally messes with my day, but to not go off of it entirely at this time. Apparently I can tweak it to my needs within reason. With that, I'm thinking about just going heavy at night and none in the morning. Does that make sense to you guys?

Gary
A drummer with a headache.
Western NC - USA

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Kevin_M

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Re: Starting Topamax as a preventive
Reply #12 - Sep 28^th, 2012 at 3:11pm

Quote:

I'm thinking about just going heavy at night and none in the morning. Does that make sense to you guys?

Another here does the same thing and has found that a more tolerable way to go, sleeping off most any disoriented feeling. Worth a try for you.

Chirping in to beat the crickets to a moonlit chilly starry stillness, and that faaaar off train rumbling. Oh, the refrigerator's running, too.

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fun2drum CH.com Junior Offline I Love CH.com! Posts: 55 Marion NC Gender:	Re: Starting Topamax as a preventive Reply #13 - Sep 29^th, 2012 at 4:11pm I know it's just been one afternoon but much better so far. CH not bad either just once this morning with a quick abort.
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jdelisle

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Re: Starting Topamax as a preventive
Reply #14 - Oct 3^rd, 2012 at 9:43am

It's real interesting to hear others experiences with Topiramate (Topamax). I used it to break up a cycle two years ago and I had a number of side effects. They ranged anywhere from the metallic taste (especially in carbonated drinks) to severe diminishing of motor skills, fatigue, and difficulty finding words.

The last side effect was particularly frustrating since I speak in front of many people for work.

I'm looking to bust up a cycle now and have considered going back to Topomax, but wondered if something like Imitrex might be more gentle. Any thoughts are appreciated.

Oh, and good luck to fun2drum. I'm interested reading what others have tried, but hate to hear others are struggling with this.

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ttnolan CH.com Veteran Offline beats me Posts: 247 Scotts Valley, CA Gender:	Re: Starting Topamax as a preventive Reply #15 - Oct 3^rd, 2012 at 4:55pm Imitrex is an abortive, topamax is a prevent. Two different applications. Verapamil is a common prevent with (usually) less side effects.
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jdelisle

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Re: Starting Topamax as a preventive
Reply #16 - Oct 3^rd, 2012 at 8:31pm

I have taken Verapamil daily for 9 years as a preventive with no side effects. Also, I've had great success with Topomax as an abortive to break my last cycle and would definitely use it again if it weren't for the side effects, which hit me extremely hard. I would certainly take the side effects over a CH, but hoping something like Imitrex might help to break my current cycle. I've also had no luck with Sprixas an abortive, but mild success with Magnesium.

Love to hear the feedback and I'm certainly hoping my experiences might help someone else.

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ttnolan

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Re: Starting Topamax as a preventive
Reply #17 - Oct 4^th, 2012 at 8:17pm

I think you are not clear on the terminology, an abortive aborts one headache attack only... that is imitrex and oxygen. A prevent effects the whole cycle... aborts it? Actually no, just prevents it from coming through, if you are lucky, most only reduce frequency and severity of the remaining hits in the cycle.
If you really want to abort/break cycles, may I suggest clusterbusters.com

« Last Edit: Oct 4^th, 2012 at 8:20pm by ttnolan »

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jdelisle CH.com Newbie Offline I Love CH.com! Posts: 11	Re: Starting Topamax as a preventive Reply #18 - Oct 5^th, 2012 at 2:05pm I guess I was using the terminology incorrectly. My apologies. Sounds like my treatments have all been considered "preventative".
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ttnolan CH.com Veteran Offline beats me Posts: 247 Scotts Valley, CA Gender:	Re: Starting Topamax as a preventive Reply #19 - Oct 6^th, 2012 at 1:52am No, No, not saying you are wrong... just saying imitrex won't "break" your cycles (prevent). Verapamil and Topamax have broken your cycles, meaning you are one of the few that gets complete relief from prevents... that is good. I would look at Lithium if you are not ready to go to clusterbusters.com
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jdelisle

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Re: Starting Topamax as a preventive
Reply #20 - Oct 8^th, 2012 at 11:55am

Ok, thanks for the info. Not ready for clusterbusters yet. I have an appointment with a local neurologist, which I think will help. My PCP doesn't seem to be able to differentiate CHs from migraines and my previous neuro is in Chicago.

Anyway, to get back on topic here... Still hoping to avoid Topomax at all costs. Perhaps Lithium would be a suitable alternative.

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fun2drum

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Re: Starting Topamax as a preventive
Reply #21 - Oct 9^th, 2012 at 9:46am

I'm hoping these updates will help: After a couple of weeks that were pretty rough with the loopy feeling, I'm feeling more alive now. I can understand how some people would drop off after a week or two of initially feeling that way, but going with the night-only dosing has made it possible for me to see it through. This week I feel like I have awakened from a fog and more like myself again. I'm still not taking a daytime dose, but my night dose isn't giving me the same weird feelings and strange dreams either. Cola tastes funny and some food tastes funny but some tastes fine. The thought of drinking alcohol is no longer appealing. I'm having no problems with speech or memory, but during the first week my family said I was pausing in my sentences (I didn't notice). The CH isn't out but it's at least down to 1 or 2 more manageable ones a day as opposed to 3 or 4 daily killers. There seems to be, at least for me, a required period of getting used to this medicine. I'll keep the updates coming here because I don't see a lot of people posting positive things about this drug, but it may be suitable for some.

Gary
A drummer with a headache.
Western NC - USA

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Kevin_M

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Re: Starting Topamax as a preventive
Reply #22 - Oct 9^th, 2012 at 10:20am

fun2drum wrote on Oct 9^th, 2012 at 9:46am:

I'm hoping these updates will help:

I can understand how some people would drop off after a week or two of initially feeling that way, but going with the night-only dosing has made it possible for me to see it through.

The CH isn't out but it's at least down to 1 or 2 more manageable ones a day as opposed to 3 or 4 daily killers. There seems to be, at least for me, a required period of getting used to this medicine.

Yes, they do. There will be several posts you may read that say they've tried this and that and other and nothing works, or the side effects were too bad.

Initially topomax wasn't any fast working remedy for you and as you mentioned, there were perhaps reasons some may discontinue use due to side effects. Here you are a 2 weeks out and minimizing the side-effects and getting prevention, and importantly, it beats the relentless hits.

Giving it a chance and night dosing has given you tolerable results. Persevering with a bit of faith is a good example of "I tried topomax and here is what I found and what it did for me."

Sometimes a certain preventative may not work, but knowing how to use it should be experienced. Hope it keeps you doing better. Thanks for paying it forward.

« Last Edit: Oct 9^th, 2012 at 10:21am by Kevin_M »

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jdelisle CH.com Newbie Offline I Love CH.com! Posts: 11	Re: Starting Topamax as a preventive Reply #23 - Oct 10^th, 2012 at 9:51pm Hey fun2drum. Hopefully you can stick with it a little longer. I used Topomax a few years ago and had similar side effects. I stayed on it for about a month, which managed to end my cycle. Hopefully you can find some relief too.
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fun2drum

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Re: Starting Topamax as a preventive
Reply #24 - Oct 20^th, 2012 at 6:19am

Here's something noteworthy: I don't have many night CH's but last night I woke up with one. It's the first time I've had a CH that radiated from the left eye across to the other and that DIDN'T send me to the ER. I've had night CH's before that did that and they were so intense that I was begging my wife to get me to the hospital, but last night was different. Although it was radiating across from the left in waves, the pain level was about 1/4 what it was when I went to the ER. It woke me up but was manageable, and I was able to abort it almost completely within about 10 minutes. I'm convinced that if it were not for the Topamax I would have been in the ER and would be out of work today. The side effects have become non existent during the day and not noticeable at night.

Gary
A drummer with a headache.
Western NC - USA

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