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   Author  Topic: Topamax  (Read 2157 times)
Darkelf
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Topamax
« on: Nov 19th, 2002, 6:54pm »
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Hello Everyone,
Let me start this with a quick background on myself. Two years ago I suffered my first CH attack in the month of August. It lasted for a period of two months went completely undiagnosed, and finally I went into remission.  During those two months, I suffered …well we all know the pain.  This last August it started again. This time I didn’t wait till the pain was unbearable before seeking medical help, nor did I take “I don’t know” for an answer. I was quickly diagnosed with Migraines which led to possibility of Cluster Headaches and put on a regiment of Imitrex and vicodene for two months with hopes that it would follow the same as path before. Not a cocktail I would recommend for long term and  this didn’t work either. In Oct I was referred to Neurologist for the first time and again the question of Cluster Headaches was raised but still not confirmed. Seems I and my GP (General Practice) doctor believe that they are what they are.  However, the Neuro is treating me as if they are CH, episodel in nature. I have normally two attacks day, approximately 7 to 9 hours apart (damn near set your watch by them) triggers are alcohol of any kind.  Without any meds at all, pain will last appox 1 hour to hour and 45 min. All other symptoms are present save the light tolerance and eye tearing.  Only on rare occasions are these present.  MRI and CAT scans all show NEG.  BP normal during most attacks. However, during one episode, BP went right off of the scale. (Happen to be in the doctor’s office at the time… teeeeeheee). If I do get the third attack during the day, it is totally random. I can’t predict it at all.  KIP levels are without meds of any kind peak 8 to 9, generally 7 to 8.  I have had a “stand in front of the bathroom door banging my head screaming”. 10. (sigh) only once. Pray God never again.  
 
Ok, any additional history needed, I will be more than happy to provide.
 
Over the next few posts and weeks I hope to give some raw data of using Topamax  straight up with no other drugs involved in the hopes that this might be of some benefit pro or con.  So on to the next post .
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Darkelf
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Re: Topamax
« Reply #1 on: Nov 19th, 2002, 6:56pm »
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HOWdy,
 
The beginning to Nov8th
 
After first encounter with the Neurologist, he prescribed Topamax 50 mg and Indomethacin. Prior to that I was taking Vicodin and Imitrex at the onset of each attack. My Neuro was concerned that the Vicodin was given me rebound headaches and stopped that. (of course after two months of 3 a day… sigh but we managed).  The attacks were pretty regular in timing, frequency, duration and severity. The first thing I noticed after about three days was they CHs went screwbally.  Random attacks, no pattern whatsoever. Severity, duration went to hell in a handbag.  Some lasted 10 min. Others lasted 3 hours. Some went immediately to kip 5 and sat there and went then went away and others were minor annoyance.  After about 5 days….things started settling down. Some days no CH at all or minor annoyance.  Side effects is two page typed, pick your poison. I have had very little in the way of noticeable side effects. Upset tummy…some. Depression…yeah, you have to watch this one…at least it was for me. (like a bloody damn roller coaster).  Other than that …nothing.  
 
At about 7 to 8 days the pattern began to develop again but not as rigid as before. KIP levels are way lower in the 5 or less range and manageable without additional drugs.  Follow-up visit to Neurologist and he raised the dosage level to 100mg.  
 
 Now at this point I want to say the Indomethacin was a total waste for me early on and stopped taking it due to laxative effect and how it just ripped my stomach apart. It supposed to take the edge off any additional pain and it never did. I don’t understand how doctors seem to think that pain killers are somehow going to touch this pain. I personally have had morphine during an attack. I can tell you the pain is still there, you just don’t care. (chuckle)...which is a good thing!  But that’s my personal observation  
 
Ok, so the 100 mg settles in just about like 50 mg did for about the first 3 or 4 days. Scatters the CH and you get a couple of days of no headaches here and there, reduced symptoms, some days reduced attacks. Then its back to business and the pattern sets back in again.  This time it settled pretty quickly to a KIP of 5.  On the last visit to the Neuro, Nov 8th,  he wanted to know overall, how much success we were having and I pretty much I had settled this the way its going to be. He had if I needed additional pain medicine and I refused. Citing that I could handle the pain at this point and if it got worse I would holler. I want stop this here, but I do want to point out the above is major, major error on my part. You will see why in the next post.  
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Darkelf
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Re: Topamax
« Reply #2 on: Nov 19th, 2002, 6:57pm »
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(cont)
 
Nov13th to present
 
Less than a week after my last Neuro appt the pain levels started increasing. The morning attack was holding at KIP 5, but the nightly attacks were growing to KIP 6 then 7s and finally it drew me back to Imitrex, hot towels, pacing, watching the clock, KIP 8s.  I finally got hold of the doctor and increased the Topamax dosage to 200 mg. Took 3 days for it to work before we got back to reasonable levels again.  Today is Nov 19th, 48 hours pain free.  
 
This was and is all new to me as it will be to all new CH patients. We don’t know what to expect or how to look at our condition or how to respond to a doctor other than to say it hurts.  What is acceptable in pain levels, or should we accept any pain, or buck up and take it….these is all the things that you can find in the post under “What really pisses you off”. But to us newbies, we don’t know….but believe me we are fast learning. To those who suffer several attacks a day like I did with acute vertigo attacks there is no question. It hurts doc, fix it!  End of statement.  When I resigned myself to this the way it’s going to be, dumb dumb dumb idea.  The dosage level wasn’t right. Or topamax isn’t the right drug. No one needs to suffer this pain for any reason.  And “buck up and take it” needs to get hit in the head with a baseball about 3 times day or more, everyday for no reason. Then see if they want “buck up and take it”.  
 
The doctor’s response to let me take any pain was wrong. He should have increased the dosage level to see if would get rid of the headaches altogether. I am changing Neurologist at the first chance I get.  
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Karla
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Re: Topamax
« Reply #3 on: Nov 19th, 2002, 10:15pm »
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You can safely take up to 600mg of Topamax at a time to try to prevent ch.  I tried and it did nothing for me.  You are on a relativly low dose.   You may want to talk to your dr. about upping the dose.
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Darkelf
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Re: Topamax
« Reply #4 on: Nov 20th, 2002, 11:04am »
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Thanks for the input Karla. I had heard only 400 mg.  So this is good news.  
 
 So far I am working on 72 hours pain free (breathing a long sigh of relief), not there yet, but working on it. Smiley
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Darkelf
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Re: Topamax
« Reply #5 on: Nov 21st, 2002, 10:08am »
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Well, we didnt quite make the 72 hours PF.  At 8:45 last nite the HA started in again and had me scramblin for the Imitrex. Just the one HA for the nite though.  
 
 One more thing on side effects for Topamax and that is a tingling sensation in the fingers and toes. At times it really gets bad. Its like your fingers and toes fell asleep...it can get really annoying trying to drive.  Its not constant... comes and goes thru out the day.  As to the "bundle of nerves" Smiley  well  thats not here this morning...so I guess we know that was Wink
 
If the pattern holds, I should be back on my time table in a couple of days and will have increase the dosage level again.  
 
...Dark Elf
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gtar_man
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Re: Topamax
« Reply #6 on: Nov 22nd, 2002, 10:00am »
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I don't know how you guys can take that stuff. I was on it 4 days; made me a nervous wreck, felt like sh..well you get it Tongue. My position is, there are no conventional drugs that alleviate CH and the side effects are awful for most of them. I recommend shrooms, check out the ClusterBusters site.
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Darkelf
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Re: Topamax
« Reply #7 on: Nov 22nd, 2002, 10:28am »
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Gtar_man,  
I think your probably right and I am really too much of a newbie to have too much of an opinion here. Hell, I am still in the leaning stages of what the pain is all about ...ie shadows and what not.  Will check it  out and thanks for the input.  
 
 The only thing that I can say at this point is that I am putting my eggs in the basket that  I am somehow having 3 to 4 weeks to go before remission  will magically appear.  My mindset is that I am on some endurance run trying to make it to that finish line. If my thinking is wrong, bro...lay it out to me.
« Last Edit: Nov 22nd, 2002, 10:29am by Darkelf » IP Logged
Darkelf
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Re: Topamax
« Reply #8 on: Nov 22nd, 2002, 3:03pm »
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Er...ah....is there an award for dumb...maybe a dunce cap would be in order... ;D ;D ;D.
 
Geees. How about put your right hand on your right ear and left hand on your left ear and .......chuckle.  You know I really did do a search for Topamax and I swear it only gave me two entries.  Then in I went looking for something else and suprise found someone else was asking the same questions I was.  Not to be out done I did the search again and gosh  110 entries showed for topamax.  Now imagine that.  
 
I can just see you all  Roll Eyes when I opened this brand new Topamax thread..... LMAO!  God the restraint you all  have!  I am impressed. ROFLMAO!  Or where you all takin bets on how long it would take me to find the posts???   ;D
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Darkelf
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Re: Topamax
« Reply #9 on: Nov 22nd, 2002, 4:40pm »
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Well after going thru a 110 posts on topamax, I can see where its a mixed bag, but with more positive than negative.  I learned lots about the side effects and came away with a some good info. Definitely worth the read.  Esp. the one about drinking lots of water while you are on the stuff to help with diminishing some of the side effects.  I like the idea of being able to adjust your dosage level to help with the "breakthrough" HAs  but I can see where that needs to be between you and your Neuro.  
 
If nothing else, it gave a peace of mind I didnt have before.  
 
If I havent said it before...oh hell, even if I have....bears sayin again....Thanks for bein here!  Wink
 
.......der Elf
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Not4Hire
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Re: Topamax
« Reply #10 on: Nov 22nd, 2002, 7:33pm »
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dear *der elf*.......I hear ya LOUD and CLEAR....too much interference on the Channel at times....too much information and too much conflicting results.....KISS (keep it simple stupid) not the *other*(smoooch).......I have spent MANY hours reading the archives and my *inner sense* sez if ya take too many drugs yer gonna have *sides*....my friend Oring has been suffering with this MOFO longer than me and sh'e been doin' it w/out drugs....just o2 , grit, and maybe some tobasco under the tongue.......I know (for ME) that Imitrex works as an abortive...o2 as well.........have not found a preventive, but *shrooms* DID kick MOFObutt for ME and may help you as well.......it's worth a shot.....I have to say that Topomax/prednisone/lithium/dingleberries has been good for some of our bros/sis......got NO problem with their *recipe*.......but I am (hopefully) episodic, (jury is OUT) and I get along with abortives--the proven ones: o2, 'trex, lotsa water-in-any-case, and prayer.....hope ya find yer *key*......best, Steve
 
>>rant mode OFF<<
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Darkelf
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Re: Topamax
« Reply #11 on: Nov 22nd, 2002, 8:05pm »
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Thanks Steve, we workin on it.... Smiley One dunce cap at a time ;D LOL
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Darkelf
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Re: Topamax
« Reply #12 on: Dec 11th, 2002, 6:51pm »
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Hello Everyone,
I want to finish my end of this thread. Certainly if anyone wants to keep adding...power to ya.  As of Dec 4th, I started ramping down on Topamax.  From all indications I am in remission again. (Thank God!)  Its been a long 4 months and topamax has been a big part of that 4 months.  
 
From what I discovered on this trip is that topamax can and does seem to work.  However, you can still have "breakthru" CHs and  some "shadows". All of which, for me, were on a much lesser KIP scale and certainly more tolerable.  Side effects, "for me"  were tolerable.  But I did notice that any change in dosage levels or schedule for taking the medication seems to trigger certain  symptoms, forcing your body to have endure an adjustment period of 3 to 7 days.  Then everything settles down again.  The loss of appetite is hardest thing for me to endure. I love to eat and I dont need to lose weight, so I have to force myself to eat.  YUCK!  The first bite is the worst, but I could sit next to burrito and not touch it and not think a thing about it. Smiley  That's not me!  I love my burritos with hot sauce and tacos!
 
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