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Topic: Topamax is Helping (Read 622 times) |
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HypnoticFreddy
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On Topamax for just over one week now and it is helping. I am being aggressive on the increase in dosage. I am now up to 100 mg. I take 50 mg, twice per day. I think it may be helping. I am having only like 1 CH every other day. better than the 2/day before.
Also I think it may be having mood stabilization effects.
-Freddy
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t_h_b
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Re: Topamax is Helping
« Reply #1 on: Apr 1st, 2004, 6:54pm » |
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That's great news!
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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HypnoticFreddy
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Thanks Thomas.
I haven't posted lately as I have read a lot and reflected on what I have been posting recently.
Topamax has some side-effects too. There is some minor tingling in fingers and toes. No big deal at all. Also, and this is cool, a little weight loss.
I know this med gets posted on a lot, but I thought I'd not question about it, but tell you all my positive experience (thus far).
-Freddy
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t_h_b
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Re: Topamax is Helping
« Reply #3 on: Apr 1st, 2004, 7:00pm » |
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on Apr 1st, 2004, 6:59pm, HypnoticFreddy wrote:| Also, and this is cool, a little weight loss. |
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Please send some down here then!
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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HypnoticFreddy
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LOL.
Seriously, there is a Topamax message board site that I have visited:
http://pub2.ezboard.com/bthetopamaxtrip
The site is working, but watch out it has a lot of people complaining.
Yes, it is definitely an appetite suppresant for many, and it is effective for losing weight. This is not to say it does it for everyone.
I lost 25 lbs during the summer of 2001. No meds (no CH cycle). I just walked everyday after work and cut down on fatty foods. That is the best way.
Give me your address and I'll send you some fat.
-Freddy
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| « Last Edit: Apr 7th, 2004, 9:20pm by HypnoticFreddy » |
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kissmyglass
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Re: Topamax is Helping
« Reply #5 on: Apr 1st, 2004, 7:21pm » |
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Fast Freddy,
Welcome back dude.. Glad to see you are getting some relief...keep it up.
Kev
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Edski_1
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Re: Topamax is Helping
« Reply #6 on: Apr 2nd, 2004, 10:10am » |
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A potssium supplement can help the tingling...
Good to hear that it's helping. I found the headaches early on in the topamax treatment diminished after about 2 weeks...
Been on for about 3 months now. Needed to use Zomig as an abortive the 2nd day, and none since
The other major side effects, the dopeyness primarily, SEEMS to have gone away, but I really can't tell  I do however feel that my personality has changed a bit. I am a little more prone to emotional ups and downs-but am I also involuntarily unemployed for the first time in my life...so I'm sure that isn't helping any.
But good new is good news...keep us posted!
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HypnoticFreddy
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Update:
I am on my 5th PF day after 1.5 weeks of Topamax treatment. This is the best response Ihave ever had to a preventative. I have been having a cycle for nearly 6 weeks (1-2 per day).
I also think I have a better and more stable mood as well.
The tingling is pretty intense in the morning. Especially in the fingers. I will take that vs. CHs anyday, and as suggested above, perhaps eating some bananas (potassium) could alleviate that.
I suggest to those who may be looking for a new preventative who have not tried Topamax, to try it. Many people have bad side-effects to this drug, as we all react differently to different meds, but if you can take the s/e's, go for it.
-Freddy
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Edski_1
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Re: Topamax is Helping
« Reply #8 on: Apr 4th, 2004, 8:17pm » |
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Great to hear!
Drink a lot of water too. Kidney stones have been reported as a SE...keeping weel hydrated should help that.
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HypnoticFreddy
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Thanks Edski,
I'll keep that in mind.
-Freddy
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HypnoticFreddy
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OK, folks.
Could it be?
I mean, my cycles are always like 3-4 months.
I started Topamax 4 weeks into this cycle. Within 3-4 days, I am PF. Now I have been PF for 7 days!!!!!
I have aggressively tapered up the dose (150 mg, split, twice daily). I know a lot of people complain of the side-effects. As I said, a lot of tingling. Maybe some fatigue. I will take tingling. Hell, I'll take tinkling over CHs. One cluster head I spoke with on here said he felt like he was high when he took Topamax. I do NOT feel like that. I just tingle like mad. A woman I work with brings me a banana (potassium) everyday as she is really sympathetic to these devesating headaches.
Again, I wonder, is it the drug, or is it an odd cluster that is simply going away. Does anybody have thoughts on this?
It is just so nice to be getting such quick results.
-Freddy
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magman
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Re: Topamax is Helping
« Reply #11 on: Apr 7th, 2004, 9:48pm » |
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Freddy,
The good ole Dopymax has gotten such a mixed review I haven't posted on your topic till now.
Here is what it did for me and how i got started.
Neuro had me on 25 x 2 [treating for migraines]. Worse cycle ever started in mid Dec. By mid Jan I found this site and saw what some others were dosing at.
One nite i decided to give it a test, so i went from the 25 to 100 x2 and stopped the beast cold that night.
Saw a new neuro 2.5 wks later, she concurred with my dosage, said when my episodic cycle was over to taper down to 75 and then to 50 x2 as maintenance.
After 1.5 wks at the 50, I started having some nasty shadows so i went back to 100 x2 for about 4 days. Shadows stopped, and I am now down to the 50 x2 and comletely PF.
Side effects....no tingling, but a fair amount of short term memory loss, fumbling for right words in a conversation, some dexterity problems like typing.
I drink about 2 gallons of water per day to keep the 'stones' at bay, but have always been a high water consumption type.
Hope it continues to work well for you.
Peace and PF's,
-dan
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HypnoticFreddy
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Dan,
Thanks for the insight, and I am glad Topamax is giving you relief.
You know what? This woman who I confide with at work, who again is sympathetic and empathatic towards clusters said to me that my speech is a little funny. That I have been kind of slurring, or tailing off words. Something to that effect.
So, there may be more side-effects that I am not really noticing, but you know what? As long as I am functioning, and can do my job, and feel, in general ok, I will take it over having 1-2 CHs every damn day. I am sure you would agree. It is VERY cool to hear it worked for you.
I have a return visit with my new Neuro in 3 weeks, and I am going to let him know some of the feedback from cluster heads. So thanks for the input and may these monstrous things keep abay!
I am at 150 mg, and I wonder if I can back off on the dosage. I mean I think I was getting complete relief at 100 mg.
-Freddy
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Thorns
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Re: Topamax is Helping
« Reply #13 on: Apr 7th, 2004, 10:48pm » |
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on Apr 7th, 2004, 9:58pm, HypnoticFreddy wrote:| You know what? This woman who I confide with at work, who again is sympathetic and empathatic towards clusters said to me that my speech is a little funny. That I have been kind of slurring, or tailing off words. Something to that effect. |
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I guess that's better than beating your head and jumping around like an ape in front of her!!!
Glad you found some relief!
Thorns
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HypnoticFreddy
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Actually, every morning she puts a banana on my desk (for the potassium), so perhaps I WILL jump around like an ape!!!!
-Freddy
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Edski_1
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Re: Topamax is Helping
« Reply #15 on: Apr 8th, 2004, 3:47pm » |
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Freddy, it CAN help that radically. Glad to hear it.
On the other side of the mountain is me. Circumstances are forcing my hand. I've suspected for a month or more that my cycle might be *broken*, or at least supressed enough not to need the topamax...
I'm basically off it for the last week. I know, shouldn't do this without the doctor, but can't really see the doctor now without the cash  ...the driving force of the topamax decisions...out of work will do that...
So far so good. And I am feeling sharper mentally.
But all in all I have to rate my topamax experience as excellent. It stopped the attacks fast and very effectively...for a price. And hopefully it put my cycle in remission for some time.
**** PS: And my luck might be changing, as my private business efforts landed a 2nd client today! So maybe the lack of work will work itself out!
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| « Last Edit: Apr 8th, 2004, 3:48pm by Edski_1 » |
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BDinbo
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Re: Topamax is Helping
« Reply #16 on: Apr 10th, 2004, 5:54am » |
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I too think the Topamax is working for me but find myself feeling a little spacey & losing my train of thought an awful lot but who gives a damn when all I've wanted to do is die the past two months cuz I can't shake these damn Cluster HA.
My cycle started around Feb 20th, never realized I had CH until I stumbled onto this website desperate looking for answers and was so relieved to find out that I wasn't crazy & this pain wasn't being made up by me & not in my head & was real & experienced by others like you all, THANK YOU ALL FOR SO MUCH THAT I LEARNED that DR.'s could not tell me for the past 6-8 years of my life. I've been miserable! Anyway- Back to Topamax,
Neurologist started me on Topamax 3 wks ago just 25mg/day for 1wk, did nothing,still got 4-5 attacks/day,then 50 mg/day,still nothing,ended up in ER,went back to Neuro, up to 150mg/day feeling a lot better, scared to say it, been only a couple days, been wanting to post but ya know how it goes, woke up the other day w/ no headache (first time in in 7 wks w/ absolutely no headache) only lasted 8 hrs, but a start, felt great, I think Topamax is working, making me slur words as well and stuff like that but I'll take anything! I need to go back to work! Still feels like I constantly have the shadows though & like a bad one really wants to hit but just doesn't, should I just up the dosage?, Thnks, Brian
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Edski_1
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Re: Topamax is Helping
« Reply #17 on: Apr 10th, 2004, 10:19am » |
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BDinbo, you might have been better off trying 100 mg a day to see if that worked. From what I remeber reading, the average dose in the studies that was effective was 77 mg, and over about 100 mg a day seemed to have no effect...
But several board members would disagree with those results - Magman (Dan), seems to be taking I think about 200 mg a day, as is Toader, I think.
One thinkg to think of is getting off the drug if you can...it is suggested to taper off, but seems again, from some word of mouth here that cold turkey from 100 mg a day is possible with no problems. I really didn't ramp down too much, took 50 mg a day every other day for a couple times, now haven't had any for about a week.
I do notice old though patterns returning...so maybe I wan't as immune to the side effects of dopeyness as I though.  But I noticed the first 25 mg that this stuff made me silly...
One other nice benefit of being off el Dopa...I can taste my beer again!  And so far I have not had a CH...in a less strict definition of pain free I have been. If I was to nit pick I might have had a few shadows. One was about 8 PM yesterday, and 7-9 PM was always one of my typical CH times...
So am I out of the woods? Are any of us ever? But so far so good. Still going to sing the praises of Topamax, it did stop the pain for me real well. But I am happy I'm off of it and not having any serious problems with CH.
Hoping the same for all!
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BDinbo
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Re: Topamax is Helping
« Reply #18 on: Apr 10th, 2004, 4:44pm » |
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Thanks Edski_1
Yeah when I up from 50mg/day(wasn't doing anything) for the CH, then for about a week up to 100 mg( did 50mg in morning & at night) & then that's when things started to change. Still have pretty steady dull headache waiting for an attack to hit that doesn't hit, so I don't know if cycle is over with. Just not the sharp pains & the deadly attacks that I want to die that wake me up in the middle of the night making me rush to the ER ya know. Neuro decided to keep me at 50mg in morning & take 100mg at night w/ 240 mg Verap at night. Cycle might be over with and I just might have a really long drawn out headache/migraine/rebound whatever pain in my head that just won't go away w/ any pain reliever(OTC) and imitrex will take it away but so sick of taking it & it comes back so I refuse to take it right now since it will just cause me rebounds. Haven't taken Imitrex since last Saturday, so really don't think this headache is still rebounds actually no pain relievers since last saturday. Just Ice packs and my preventive drugs, Topamax- Verapamil, still waiting for my oxygen just in case if the cycle is not over & the attacks come back.
I'd like to think the Topamax is what is working for me and hopefully it's just the cycle not ending on its own terms but either way - it can leave me alone, I'll take it.
I haven't noticed the tingling side effect from Topamax but my Taste Buds are shot. Can't taste difference between Dr.Pepper and Mountain Dew , Neuro told me that wasn't true, after I read all of these posts, I'm like O.K.? So kidney stones should be fun too, right?
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Edski_1
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Re: Topamax is Helping
« Reply #19 on: Apr 10th, 2004, 5:51pm » |
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Soft drinks didn't seem too affected to me. I could tell different ones apart. But the deadening effect was there. I guess we are all affected differently...
My neuro said you could stay on this med "forever". I didn;t like that attitude. It's expensive and very powerful, and no one really knows how it's stopping CH pain...betwen the mental side effects and the kidney stones, there's a possibility of blood acidosis at least one user said after a year they were in a moderate depression.
Like I said, we're all different, and may get some or none of these effects. I just figure that when the cycle is over there's no need to treat the CH preventatively...
Trick is to know when the cycle is over if a strong med like Topamax is getting rid of the pain. 
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HypnoticFreddy
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I'll tell you what....If the side-effects for me...remain. tinlgeness, and the occasional words slurring, vs. headaches from hell that you can't describe to people because the pain is more than pain......I'll take the side-effects.
I see my Neuro for a check-up at the end of the month. I most certainly will discuss the situation of "do I take this continulously, or do I taper off, and see what happens?"
Because I am episodic, I am inclined to think I may try to taper off. But this will have to be a decision discussed with the Neuro. In this case, fortunately, a neuro who is educated in CHs.
I wish you PF days, and hope Topamax is something you can live with. I just keep thinking of the bloody awful alternative.
-Freddy
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Lobster
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Re: Topamax is Helping
« Reply #21 on: Apr 10th, 2004, 11:43pm » |
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I am with you Freddy. If the Topa is what kicked my episode in the ass, then bring it on.
Peace
Rock
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HypnoticFreddy
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Right on Rock. Just have to see what happens in the future. Can't wait to test out the Vodka and tonic test. Then I'll REALLY know the cylcle is kicked!
-Freddy
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UN_SOLVED
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Re: Topamax is Helping
« Reply #23 on: Apr 11th, 2004, 12:40am » |
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Glad to hear the Topo is helping some. I started off small and gradually ramped up to 200 mg a day. Don't underestimate the risk of getting stones while on this drug.I got stones twice in less than a year, the first requiring surgery.
Goodluck
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Lobster
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Re: Topamax is Helping
« Reply #24 on: Apr 11th, 2004, 11:32am » |
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on Apr 11th, 2004, 12:40am, UN_SOLVED wrote:| Don't underestimate the risk of getting stones while on this drug. |
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Gotcha UN. I am hoping to taper off as soon as possible. Drinking about 2 gallons of liquids a day in hopes of reducing that risk.
Even though largely PF, CH ground-zero is still sensitive. Doubt I will start to taper until I forget it is there.
Thx,
Rock
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