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rbmb
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Revised topomax report
« on: Feb 11th, 2004, 6:32pm » |
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A while back I posted a message about how effective topomax has been in my current CH bout........well, sad to report it seems to have lost its effectiveness. The last 4 out of 5 nights I've woken up with a dandy HA and had to give myself a DHE shot for relief. The freedom from pain was great while it lasted. Is seems to me this is how the predsione taper was.....it worked for a while, then back to the same old shit.
Another item.....does anybody here get ringing in their ears and see little white spots occasionally during cluster periods?
Rich
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Prense
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Re: Revised topomax report
« Reply #1 on: Feb 11th, 2004, 7:08pm » |
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on Feb 11th, 2004, 6:32pm, rbmb wrote:| Another item.....does anybody here get ringing in their ears and see little white spots occasionally during cluster periods? |
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Not me, but I recall someone else asking something like that not too terribly long ago. Perhaps you could check out the archives.
Chris
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Edski_1
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Re: Revised topomax report
« Reply #2 on: Feb 12th, 2004, 10:47am » |
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Rich:
How long did Topamax give you relief? I've been on for about a month, and it's been doing pretty well...
But the last few days, well, the sahdows seem to be getting a little stronger. And it makes me wonder...
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rbmb
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Re: Revised topomax report
« Reply #3 on: Feb 12th, 2004, 2:13pm » |
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About 5 weeks, taking 125 mg a day, 75mg at night and 50 in the morning. During that time I had a few bad HAs, but the rest were just shadows. Then last Fri. night I woke up with a severe one and have continued just about every night since with 2 or 3 the last 2 nights. It's like it just quit working altogether. Will see neuro today and see what he says.
Rich
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Edski_1
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Re: Revised topomax report
« Reply #4 on: Feb 12th, 2004, 2:36pm » |
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ewwwwwwww....
not happy to hear that. just passed 5 weeks today, and as I said I'm feeling a few more shadows than I had. I hope it's coincidence...
PF vibes go out to you certainly...
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eyhavhedaches
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Re: Revised topomax report
« Reply #5 on: Feb 12th, 2004, 3:36pm » |
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Not sure if I would even try topamax after finding out that it could be linked to myopia and glaucoma.
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magman
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Re: Revised topomax report
« Reply #6 on: Feb 12th, 2004, 3:49pm » |
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Topomax did nothing for me at 25mg x2. After reading what some others were dosed at, and researching the pharmacutical pages, i decided to up it on my own.
Having a doc that didn't seem to care and coming way to close to cashing it in, self-medding was the least of my concerns. I upped it to 100mg x2. That very night I went PF and it has been 25 days now!
Saw a new Neuro 2 weeks ago and she concurred with my change in dosage, we have a plan for my next cycle as this one should end in another week or so.
Wishing you all PFDAN's,
-dan
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thomas
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Re: Revised topomax report
« Reply #7 on: Feb 12th, 2004, 3:50pm » |
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on Feb 12th, 2004, 3:49pm, 357Mag wrote: That very night I went PF and it has been 25 days now!
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Best news I've heard all day, bro. 
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toader
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Re: Revised topomax report
« Reply #8 on: Feb 14th, 2004, 1:11am » |
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Hmmmm. Suspicious here of my Topomax as well. I'm on 200mg/day Been on that dose for almost 8 weeks now. The last 3-4 weeks I've been having daily shadows and constant headaches starting early afternoon and continuing all day. Blasting through my O2 and Imitrex like bleedlin candy some days. Not to blame the Topomax - but gotta blame something - right?  I mean, I know this stuff is messin with my mind already.
Now I don't really know if this means I've burned through my dose and I need to up it or that Topomax is for shit and I need to just wean off at get something new like Gabetril. My current neuro is no help. Have appt with new one in 3 weeks - but well, that's a bit of a wait now. Anyway, just wanted to post and see if anyone had any thoughts.
Tempted to wean myself down to half dose to see what happens.
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Edski_1
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Re: Revised topomax report
« Reply #9 on: Feb 14th, 2004, 9:27am » |
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not sure Toader...I'm on (I think) about 1/2 your doseage, 100 mg. Take it at night. I seem OK inthe morning, but in the afternoon I seem to feel the shadows the last week or so. I've been on "el Dopa" about 5 week now...
No major a$$ HA's yet, so I can't say it's lost it's effectiveness, but for a couple of weeks I felt NOTHING and it was great. I am not feeling the side effects to speak of, so that's good too, but hearing others start to say that they're seeing the effectiveness of this drug wane makes me wonder...
I'm not supposed to see my neuro until the end of May. I'm also out of work...by that time I have the choice of either COBRA'ing my medical benefits, paying the full $ for the topamax (which is something like $140 for 30 100 mg pills), or looking for something else...
My history with the beast is sketchy. One mis-diagnosed bout 13-14 years ago. By the definitions, I think I'm border-line episodic/chronic...either episodic with a really long cycle, or a quasi-chronic who will go into a long remission...so I don't know wtf to do...
I guess for now I keep taking the topamax while I can still get refills for $40, as long as 1) I'm only getting mild shadows and 2) I have an ample supply of Zomig around in case I get some real head bangers...
I still have complete coverage until the end of March, so I can see the Neuro for cheap if I need to...probably should...and see what other lower cost options I might have.
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Edski_1
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Re: Revised topomax report
« Reply #10 on: Feb 16th, 2004, 12:44pm » |
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Just an update:
Still having the shadows, but the last couple of days been better. JUst had a noon time beer, which lately has given me a distinct shadow (oddly evening beers have not)...
And I feel good!  That's nice feeling...
As is the case with Dopeymax, I still get a nice buzz from that 1 beer...and I still can't taste much...but no shadow!
So I'm for the moment, just chalking it up to the "cycle" lurking underneath...and the topamax dulling it...as I've said before I really have no idea how long I have to deal with it. Might be a while.
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toader
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Re: Revised topomax report
« Reply #11 on: Feb 16th, 2004, 2:30pm » |
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Thanks for that, Ed
I, too, am chalking it up to the cycle. There is just no rhyme nor reason to the beast. I just shake my tiny fist at the sky and blame dopeymax or the demon of the day. Chocolate still a no, no though.
The minute I decide to change my dose, I go and have a good day - go figure.
Sucks about your insurance - hope you find a job soon. Seattle computer job market has been horrid but there has been a tease of hope - kinda like the sun poking its nose out from behind rain clouds - you never know if it'll last. I'm trying to shoestring a computer security company along. I'm hopeful I'll land a decent contract this month if I don't pull another Jerry MacGuire and start babbling on about my "Mission Statement". Weeee - gotta love that dopeymax! Anyway, I think I'm actually getting used to 'El Dopa' as you call it - scary thought.
Take Care
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MarkV2
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Re: Revised topomax report
« Reply #12 on: Feb 16th, 2004, 8:18pm » |
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Topamax wasn't effective for me after around 10 months.
I developed my first kidney stone problems at 9 months. I am having laser surgery for kidney stone fragmentation this week.
I added depakote in addition to topamax after 10 months. I haven't had a CH after that but I am also taking Vioxx too due to the kidney stone problems, so I'm unsure what med combo is actually working.
I plan on getting off topamax hopefully due to the stones.
Wish you luck.
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Edski_1
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Re: Revised topomax report
« Reply #13 on: Feb 17th, 2004, 9:18am » |
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Thanks, for the input, Mark...
Are you chronic or episodic? My interest is this: My feeling is that in addition to the kidney stone issue, and the recent post about the acidosis issue...there also seems to be a long term concern about taking topamax from a behaviorial point of view. Seeing that there is an off label use of this drug for bi-polar disorder, and most of us sort of joke about the side effects of "dopey-max"...at least one poster reported after a year on this stuff that they felt they were depressed.
My neuro contended that you "can stay on this stuff for the rest of your life", but I'm not happy with that prognosis. I really don't want to be on it for much longer than the duration of this CH cycle, however long that might be...but if that appraoches a year, it seems it might be getting close to a time frame where other problems might manifest.
Powerful med, but powerful meds can also have powerful side effects...
Again, I appreciate your input!
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MarkV2
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Re: Revised topomax report
« Reply #14 on: Feb 17th, 2004, 10:15am » |
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Edski_1,
I am a chronic cluster head but also have slight CPH traits (have been diagnosed this way independently by 2 different neuros). I have had "depression" effects from topamax that became pretty unbearable after 8 months.
Just got off the phone with my neuro as I was typing this and told him about the stone. He said to start tapering off the topamax.
PS - be careful of drinking a lot of beer (and regularly) while taking topamax. If you're prone to bad side effects, they may intensify (I had serious problems like never before with demented lucid dreams, bad anxiety "waves" during the day, and just an overall feeling like I was in a really bad rut I couldn't get out of). When I stopped drinking it all went away. In all my years, never had these problems drinking beer before I added topamax to my Miller Lites.
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dodie
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Re: Revised topomax report
« Reply #15 on: Feb 17th, 2004, 10:34am » |
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 you guys are bummen me out. Ive been dealing with a killer cycle and the prednisone wasnt kicken it. Doc put me on topomax increase + prednisone taper 5 days ago, and i have never felt better. dopey yes, but I feel great !
Dont tell me this is going to all go away.  .
granted I cant taste my food, Im really thirsty all the time and I'm concidering going blond to match my new spacey outlook on life. But at least Im not in pain anymore.
I got no problem with crazy, been there done that! PF is what i want. Dodie
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rbmb
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Re: Revised topomax report
« Reply #16 on: Feb 17th, 2004, 1:47pm » |
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Had kind of a rough night last night.....had a kip 5-6 around 7 pm which I just rode out and then woke up with a kip 8-9 around 11 pm.....took DHE shot which finally started slowing it down after 20 min or so, whole thing lasted about 40 min. Did my usual high speed pacing around the bedroom, hot washrag to the eye, beating on the walls, yelling bad words....generally having a swell time.
Saw my neuro recently and told him that besides not working any more, topomax was making me an idiot at work....he suggested just taking it at night. Tried that and have felt more with it at work but am going to go back to splitting and increasing the dose (50 mg in morning, 100 or more at night) although I think I'm wasting my time.....I'm afraid topomax isn't going to help me any more in this particular cycle. He is also after me to quit smoking (imagine that). I agree that there are numerous good reasons to stop smoking and I've read that a large number of CH sufferers are smokers. What I haven't read is that stopping smoking has brought relief for many people. Just needed someone to complain to....I think my friends are getting tired of hearing about it.
Rich
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Edski_1
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Re: Revised topomax report
« Reply #17 on: Feb 17th, 2004, 3:30pm » |
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Dodie, please don't get bummed...but I really don't think this med is truly understood, especially for an off label use for people who *don't* have the symptoms that the med was intended to treat. That's pretty important...but so is the fact that we get some relief from the med...
But kidney stones are a serious medical issue, and so is depression. If there is a way to publicize our experiences, the 1) maybe someone else can avoid a problem, and 2) maybe in some small way science progresses.
If it works, keep taking it, but let's keep in mind some of the potential problems. Mark-appreciate the heads up...have noticed some vivid dreams, luckily they have not been dimented... 
So far for me I feel good...still some shadows, but overall I'm pushing close to 7 weeks since I've needed to use a Zomig.
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Karla
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Re: Revised topomax report
« Reply #18 on: Feb 17th, 2004, 9:58pm » |
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I had tried topamax at 200 mg and had no luck with it. The ha clinic neuro specialist recomended that I take the topamax at 600mg before I give up on it. I tried it for a couple of months and had no luck with it. You might want to go for the gusto and slowly up it slowly to 600mg and see what happens for you.
BTW I am a nonsmoker and I am chronic sufferer.
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Karla
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dodie
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Re: Revised topomax report
« Reply #19 on: Feb 24th, 2004, 1:53pm » |
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Wow , I must be such a light weight compaired to you guys.
I ended my prednisone taper 4 days ago and I am only on 50 mg of Topomax, been on for 2 weeks now. I have the dopey feeling and tingles in toes and fingers and all but no HA .
I feel great.
I cant beleave you guys are taking so much and it is doing nothing! I dont even feel worthy to be reading this or to be calling my self a sufferer! 600 mg ! Holy gees!
My Dr. wants me to stay on 50 mg for 2 more weeks work down to 25mg and go off and see if it broke the cluster. I hope it did, but man I bow to you guys how you do it ?  I dont know.
good luck to ya and PF vibes all the way !
Dodie
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Edski_1
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Re: Revised topomax report
« Reply #20 on: Feb 24th, 2004, 4:53pm » |
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Well, from what I've read, and what my Neuro has said, for HA prevention, the "best" dose seems to be 100 mg or less. If 50 mg is doing you well, that's great, and may not be so "lightweight"...
So far I've been doing pretty good last week of so...not even much in the way of shadows to mention.
One note: I did miss a day, and I strongly advise against it. Had not real issue with headaches, but my mental state was NOT helped. Furthers my contention that long term this stuff is NOT good phsychologically...
Do Dodie, of your Doc want's you to taper down to 25 mg's then off, I think that's a wise idea. If the HA's come back you can always start taking it again. I'm not sure I buy the "you can stay on topamax forever" school of thought...
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sgarner
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Re: Revised topomax report
« Reply #21 on: Feb 26th, 2004, 1:34am » |
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I have ringing in the ears but no white spots
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henzey
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Re: Revised topomax report
« Reply #22 on: Feb 26th, 2004, 8:48am » |
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I think you all made a good point about different levels of Dopeymax being high for some and low for others. I had such an extreme reaction to just 50 mg that my doctor said that it was like most people taking 200 mg...something in our body chemistry makes us more reactive to certain medications. So, Dodie, I do think that your 50 mg may well be like 200 or more for others. I am glad for the 10 pounds I lost on it , but that's about the only good thing that happened.
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Edski_1
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Re: Revised topomax report
« Reply #23 on: Feb 26th, 2004, 10:17am » |
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And it's funny how I can speak of a nice run of pain free time and then come a couple of days a strong shadows (K2-K3)...
So far today has not been as bad as yesterday...funny, have had NO beer for a few days. Maybe that's the problem. No alcohol at all in fact...hmmmm
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rbmb
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Re: Revised topomax report
« Reply #24 on: Feb 26th, 2004, 12:05pm » |
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I may be coming to the end of my current cycle (or maybe it's just wishful thinking)......I say this for two reasons....(1)- HAs started in last week in Dec, so it has been 2 months now and that's about how long past cycles have lasted and (2)- HAs have started happening at unusual times and are less intense then normal. This has been my experience in the past. Has this happened with others as they neared the end of their cycles?
Am starting to taper off Topomax....maybe this is a mistake but it doesn't seem like it's been helping lately anyway. If I go for a week or so with no HAs, I'll have a glass of wine or a beer and if no HA, Ill know they are gone.
Rich
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