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Topic: Did Topamax work for you? (Read 862 times) |
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Bond007
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Did Topamax work for you?
« on: Sep 19th, 2006, 1:57pm » |
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I'm currently titrating up to 300 mg of Topamax. While I was at 200 mg a day, I wasn't getting any relief from my CH. The only real relief I ever got while on Topamax was when I was increasing the dosage. Once my body adjusted to the newer level, the CH returned with a vengeance. My neuro seems to be concerned that the Topamax isn't helping me as he was suggesting a lumbar puncture if I saw little or no relief after he works me up to 400 mg per day which is the highest recommended limit for the drug. Right now, I'm at 250 mg and my CH is worse than it's ever been and I'm rapidly approaching the 1 year mark since this all began.
I know that not all meds work for all of us, but I just wanted some kind of confirmation from my fellow clusterheads that Topamax didn't help you either and that I'm not the only out there who doesn't get relief from this drug. My neuro's starting to wonder if I've contracted some kind of virus that's causing the one-sided CH-like headaches. I'm really not looking forward to the prospect of a lumbar puncture. 
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| « Last Edit: Sep 19th, 2006, 1:58pm by Bond007 » |
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BigCoffinHunter
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Re: Did Topamax work for you?
« Reply #1 on: Sep 19th, 2006, 2:04pm » |
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I've never taken it myself, but there are a lot of people here who got no relief from it. What is a lumbar puncture? Have you tried any other preventative like Verapamil?
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Bond007
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Re: Did Topamax work for you?
« Reply #2 on: Sep 19th, 2006, 2:26pm » |
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Lumbar Puncture is the same as a Spinal Tap. Big Needle, Sharp Pain in your Spinal Column to obtain spinal fluid to test for any number of reasons. They do it on "House" all the time. 
And, no, he's never had me on Verapamil yet. I've only been in to see him twice. The first time was when he diagnosed me with CH in July the 2nd time was 9/14/06 when he increased my Topamax. I don't have a follow-up appointment scheduled yet. He told me to call and make an appointment if increasing the meds isn't working for me. So, 5 days later, my CH is worse than it's been in months. I called his office and left a voicemail for his secretary. We'll see what happens.
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Karla
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Re: Did Topamax work for you?
« Reply #3 on: Sep 19th, 2006, 2:29pm » |
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I tried up to 600mg at the advise of a ha/pain clinic neuro and it did noting for me except make me stupid. As far as a lumbar puncture I have not heard of anyone every needing to get one for ch. I would switch drs or just refuse it. Get a second opinion. It won't help and will give you a bad ha. UNLESS you are having other symptoms with your ha then maybe you should get it done. Good luck with it.
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Karla
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BigCoffinHunter
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Re: Did Topamax work for you?
« Reply #4 on: Sep 19th, 2006, 2:30pm » |
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Verapamil's a pretty good bet, that's helped a lot of people (including myself). It's cheap too, which is a nice change.
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Bond007
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Re: Did Topamax work for you?
« Reply #5 on: Sep 19th, 2006, 3:28pm » |
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on Sep 19th, 2006, 2:29pm, Karla wrote:| UNLESS you are having other symptoms with your ha then maybe you should get it done. Good luck with it. |
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It's not that I'm having other symptoms with my HA. I'm getting the impression from my neuro that he believes since the Topamax isn't working that something else is responsible for the HA's. He seems to be stuck on Topamax for some reason. Then, again, I also don't get a drooping or teary eye with my CH. I do get the nasal congestion and severe post-nasal drip with pain concentrated only around my left eye and left temple. The left side of my face flushes and gets mush warmer than my right. So, based on those autonomic features and the pain, he diagnosed me with CH.
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Bond007
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Re: Did Topamax work for you?
« Reply #6 on: Sep 19th, 2006, 3:29pm » |
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on Sep 19th, 2006, 2:30pm, BigCoffinHunter wrote:| Verapamil's a pretty good bet, that's helped a lot of people (including myself). It's cheap too, which is a nice change. |
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That would be nice a change. Topamax is quite expensive! UGH!
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unsolved1
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Re: Did Topamax work for you?
« Reply #7 on: Sep 19th, 2006, 6:23pm » |
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No ... Dopeymax didn't work for me and it gave me kidney stones TWICE !! 
UNsolved
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Edski_1
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Re: Did Topamax work for you?
« Reply #8 on: Sep 19th, 2006, 6:59pm » |
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Topamax did a good job getting rid of CH pain for me.
Also got rid of motivation, creativity, and I had a hard time finding and differentiating words like "left" and "right" and "slow" and "fast".
I was on 100 mg a day. Supposedly much more than that was not really that much more effective - but that might be old results.
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Bond007
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Re: Did Topamax work for you?
« Reply #9 on: Sep 19th, 2006, 8:24pm » |
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Yeah, I'm finding that I'm having a slight problem with motivation as well, now that you mention that. As far as everything else, I'm really not noticing any other bad results. Then again, I'd have used a different word than "bad" if I could have thought of a better word.....
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She-ra_mommy
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Re: Did Topamax work for you?
« Reply #10 on: Sep 20th, 2006, 12:18am » |
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topamax never work for me I am being whined off of it and being put on cymbalta which knocks me out at night but does nothing for my headache.
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Skyhawk5
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Re: Did Topamax work for you?
« Reply #11 on: Sep 20th, 2006, 1:44am » |
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No help for me. Almost ended the cycle and Me too. I had a bad reaction, with severe abdominal cramps and vomiting, didn't eat for nearly 2 days. After one week no more for me. Wish you Luck! Don S
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chopmyheadoff
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Re: Did Topamax work for you?
« Reply #12 on: Sep 20th, 2006, 2:38am » |
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JESUS CHRIST - THIS BUTCHER WANTS TO GIVE U A SPINAL TAP BEFORE HE TRIES YOU ON VERAPAMIL.
BIN HIM OFF - FAST
i have got complete relief from verapamil after being chronic for 7 years.
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FramCire
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Re: Did Topamax work for you?
« Reply #13 on: Sep 20th, 2006, 9:28am » |
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1. I tried Topomax and can't say it helped. It did make me into a BIGGER idioot.
2. How far are you from Springffield, MO? They have a headache Care Clinic with really good docs who see a lot of CH patients. Send me a PM if it isn't too far for you to go for a doc appointment.
3. I am SHOCKED that Verap wasn't used BEFORE anything else. It is cheap, effective, and much fewer side effects.
4. If you have any history of kidney stones... NO TOP!
5. Have you tried 9mg or so of melatonin? It can take a few days but worked very well for me for a while... (still take it)
6. Id try a occipital nerve block before a spinal. They both hurt but there is a big difference in severity of pain. MY occipital nerve block didn't work at all, but I think the doc might have missed to nerve (he is a good doc but made a minor mistake).
Just a few opinions.
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wysper
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Re: Did Topamax work for you?
« Reply #14 on: Sep 20th, 2006, 11:13am » |
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I was given a spinal tap once in the hospital. Ouch! and it gave me a very, very bad HA. So, I'm hearing that a lot of you have tried topomax and it didn't do anything for you. That kinda stinks cause that's what the doc gave me. I guess I'll have to see how it works. Luckily I have a job that doesn't require much thinking, and I guess my quick wit and scarcasm will be slowed down but that got me in trouble anyway.
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BB
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Re: Did Topamax work for you?
« Reply #15 on: Sep 20th, 2006, 10:36pm » |
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Lumbar puncture is NOT required for the diagnosis of CH. If he suspects viral infection he should do a full blood count, and look at the white cell count. ANY type of infection be it viral or bacterial if significant enough will increase the white cell count.
DH got a LP only because he developed some unusual symptoms such as left sided weakness and drowsiness after 1 attack. It was perfectly normal of course. Prof Spira was surprised the hospital bothered to do LP with the diagnosis of CH. He said that even with the above symptoms he would have waited and observed first as there was no sign/indication of infection in his blood tests.
Verapamil broke his attacks from 8 a day to 3 and now the combination of ergotamine and methysergide breaks it down further to once a day, and the lyrica reduces the pain intensity greatly. Oxygen is a blessing too.
Painfree wishes to you.
Annette
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kcopelin
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Re: Did Topamax work for you?
« Reply #16 on: Sep 21st, 2006, 1:18am » |
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I can't even imagine why they would want to do a spinal tap on ya. Geez, those hurt. (and that is definitely an understatement) Verap is 1st line preventative, often along with a prednisone taper while the verap kicks in. If your neuro hasn't tried this yet, insist on it, or get another neuro.
IMHO
Not trying to tell ya what to do....
PFDAN
kathy
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sandie99
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Re: Did Topamax work for you?
« Reply #17 on: Sep 21st, 2006, 2:36am » |
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Dopeymax did not work on me... Made me walk into a store and find a certain department and then wonder for 15 minutes that why I'm in there, though.
And ch did not like topomax... nope, I got my record-breaking amount of hits/day during my dopey time.
Verpamil 600mg helped me stop my chronic ch and when my cycle begun after that in this spring, I used only energy drinks and caffeine tabs to get rid of it.
Best wishes & PF time,
Sanna
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Bond007
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Re: Did Topamax work for you?
« Reply #18 on: Sep 22nd, 2006, 7:50pm » |
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Thanks for all the great replies and advice gang! It truly means a lot to me. My neuro probably decided to go with the Topamax because I was already on it when I first saw him. My GP put me on it when he thought I was having migraines. My neuro decided to just "fiddle" with my meds a bit to try and control my CH. Instead, I'm getting incredibly worse, especially since I've been titrating up to 300 mg a day. I'm literally getting no less than 9 hits per day in the last 8 days and I have had my longest pain free time has been 3.5 hours and that WAS THIS FUCKING MORNING!!!!
UUUUUUUUUUUGGGGGGGGGHHH!!!
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BigCoffinHunter
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Re: Did Topamax work for you?
« Reply #19 on: Sep 22nd, 2006, 8:01pm » |
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God you have my sympathy. Can you call your neuro and have him try something else, like Verapamil? How about a steroid run to give you a break?
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Bond007
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Re: Did Topamax work for you?
« Reply #20 on: Sep 22nd, 2006, 8:26pm » |
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I'm firing my neuro and hopefully getting into the Mayo Clinic. I'm crossing my fingers!
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DavidEH
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Re: Did Topamax work for you?
« Reply #21 on: Sep 23rd, 2006, 12:57am » |
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Iffy...
Only cuz, I would say Topamax may have worked... But...
Maybe by the time I got to see useful mgs, I was past peak and almost out of cycle...
I'm at 50mg... and I haven't had a cluster in a week.. But I don't know if if it's the relpax or the MAgneisum/ Depakote drip (ER a week ago) that did that..
I have nasty migraines though, almost everyday, and still some shadows, here and there, and when I bumped up to 75 I was sick for 2 days (constant puking, but I'm not sure if that was the up of mgs, or a bad reaction to perks or bad chicken)......
Oh and Topamax is making me so stupid, like with words and stuff... I'm a relatively smart guy (high IQ, 130s+) and I am jibber jabber lately... and I can't spell at all, and I forget alot...
I will certainly taper off soon enough... I need my smarts and creativity (musician for one, and I have a deadline, guy is waiting on 10 more tracks for a project, all together 20 tracks, and well I am jibber jabber)...
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Bond007
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Re: Did Topamax work for you?
« Reply #22 on: Sep 23rd, 2006, 8:05pm » |
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That sucks David! I'm hearing far too many horror stories about dopeymax. My worst side effect was that I couldn't add and subtract......and I'm an Engineer by trade. Of course, complex math is a HUGE part of my job so I'm having a rough time of it as well. UGH!
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Richr8
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Re: Did Topamax work for you?
« Reply #23 on: Sep 23rd, 2006, 8:32pm » |
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Being dopey to begin with, I got to 240mg and could not function. Had to stop and go back to Verap and O2.
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pf wishes,
Rich
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"Med free"- A few seeds and lots of O2-LG but not great.
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swimchica623
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Re: Did Topamax work for you?
« Reply #24 on: Dec 19th, 2006, 9:36pm » |
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on Sep 22nd, 2006, 7:50pm, Bond007 wrote:Thanks for all the great replies and advice gang! It truly means a lot to me. My neuro probably decided to go with the Topamax because I was already on it when I first saw him. My GP put me on it when he thought I was having migraines. My neuro decided to just "fiddle" with my meds a bit to try and control my CH. Instead, I'm getting incredibly worse, especially since I've been titrating up to 300 mg a day.
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uhh I see this is old but I thought I'd reply anyway so maybe you'll get this. I was on topamax too cuz I was misdiagnosed with migraines as well, because we all know migraine people love to bang their heads against the wall and cry and scream all the time! I was showing slight improvement on it and didn't have any problem with the side effects, one of the lucky few it seems, so my dr decided to keep me on it but added verapamil after diagnosing the clusters. But he's real good at pitching anything that doesn't work and only keeping things that work...I'd say screw it if its not working, these medicines seem special tailored for each person and its also the mixture that works for everyone that is so important.
I like my topamax though...topamax and verapamil are good friends.
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