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davidtx
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Topomax Driving me nuts please help
« on: Jan 18th, 2004, 2:41am » |
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I just start on Topomax about 6 days ago with 50 mgs for 4 days and then 100 mgs for the last 2 days and supposed to go up to 200 mgs eventually. I truly have lost a lot of focus and find a lot of things hard to do now that use to be easy. Now this would be easy to take if the pain were gone, but the pain only left for about 3 days and seems to be even worse now. My Neuro took me off the Verapamil and kept me on the Lithium. I have chronic CH for over 3 years and I'm absolutely miserable to the point of suicidal tendencies. I just don't know how I can take this pain anymore. Please can someone give me some suggestions with this. Anything would be helpful. Thank you.
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pubgirl
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Re: Topomax Driving me nuts please help
« Reply #1 on: Jan 18th, 2004, 3:30am » |
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David
You've certainly come to the right place for help. Please don't despair.
There are many chronics here who can give you good advice about preventive regimes. I can't I'm afraid as I only know about them in theory, but do know that Topamax has caused quite a lot of very uncomfortable side effect and doesn't suit some people.
You don't mention if you have a good abortive. 02 works for many of us, and although it won't affect your chronic state, it could give you much needed, drug-free reliefrom the terrible pain.
Keep posting, the cavalry will be on their way soon to help
Wendy
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Lizzie2
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Re: Topomax Driving me nuts please help
« Reply #2 on: Jan 18th, 2004, 3:53am » |
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Dear David,
Was the verapamil ineffective? Wendy is right in that topomax has caused a number of illeffects for a number of us here. In my opinion, if it is causing THAT many problems for you, I would call your neuro right away and see about getting off of it. Maybe see if going back on the verapamil (if this was helping you) is an option?
At the very least, give your neuro a call right away and tell him/her that the topomax is not working out for you and is causing horrible side effects that you cannot deal with, and you want off of it right away! See what other suggestions they have for you.
Please don't give up. You can make it through this and there are lots here who will support you!!!! Like Wendy said, try to get ahold of a good abortive, such as O2 or imitrex. Hang in there....
~Lizzie 
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Bob P
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Re: Topomax Driving me nuts please help
« Reply #3 on: Jan 18th, 2004, 6:03am » |
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Topomax made me dumber than a dog turd in the snow. Plus it didn't stop the attacks.
How much verap were you taking?
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Jackie
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Re: Topomax Driving me nuts please help
« Reply #4 on: Jan 18th, 2004, 6:38am » |
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Hi David.....sorry to hear you're having such a bad time of it.
My husband, Blake, is a chonic. He is on Topomax and it has been a miracle drug for him. The dosage he started was 50mg.... added another 50mg pre week until the HAs were controlled. It only took 150mg to do the job. The ideal situation seems to be starting at a low dose and them taking it up SLOWLY. Blake is fairly med tolerant so the side effects didin't last long. His memory isn't always 100% but we consider it a small price to pay. He is also on Verapamil and Lithium. He was still having a few HAs until about the 3rd or 4th week on Topomax.
Do you have any abortives....have you tried oxygen therapy?
Good luck, David....keep us posted on how you're doing
Jcks 
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Edski_1
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Re: Topomax Driving me nuts please help
« Reply #5 on: Jan 18th, 2004, 7:56am » |
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I posted a link yesterday about some recent research (the article I think was from late 2002) about cluster meds...there was a couple paragraphs about topamax that were encouraging "for those who could tolerate" it.
So that's probably the key. I felt pretty dopey starting out, but now, after about a week and a half not only have the frequency and severity of my headaches been greatly reduced, 2 of the last 3 days have been nothing but shadows...so at 50 mg it seems to be working well. I'm supposed to up the doseage to 100 mg tomorrow...
There already seems to be soem anectdotal evidence about topamax: that if you exceed your own internal "doseage threshold" you might trigger headaches...some disagreement on how to administer the dosage ( some say split the doe twice a day, others say once a day), and some apparent disagreement on how to ramp up tot he target dose.
Good luck, but my gut says you might be one the unlucky ones that Topamax might not be right for.
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davidtx
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Re: Topomax Driving me nuts please help
« Reply #6 on: Jan 18th, 2004, 8:06am » |
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Everyone:
Tnanks for the help. I've tried o2 in the past with limited results but still have Verapamil left and will go back on to see if this helps. Also have 50mg tabs imitrex but don't really seem to do much (I think I've taken so many of these over the years that they are almost useless now). I'm not going to give up on the topomax yet, but I'm wandering if anyone has heard of the topomax causing people to have headaches rather than taking them away. Any info is greatly appreciated. Just wandering because the ch's that I've experienced over the last few days are some of the worst I've ever had. Now, also could be becuase I'm not on any kind of bp med either though. Thanks so much.
David
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davidtx
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Re: Topomax Driving me nuts please help
« Reply #7 on: Jan 18th, 2004, 8:12am » |
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I was taking 300 mg sustained release of verapamil twice a day
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Jackie
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Re: Topomax Driving me nuts please help
« Reply #8 on: Jan 18th, 2004, 8:41am » |
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David,
How much lithium are you on?
Do you still have access to o2?
It's really important to get on the oxygen at the very first sign of a HA.....he who hesitates is lost so to speak. Maybe taking the imitrex pill and then getting on the 02 right away will help boost the imitrex. Blake has done that with Zomig and it seems to help. Zomig works best for him and lasts much longer than some of the other abortives....just our experience....every drug seems to be unique to the individual.
Are you getting hit mostly during the night or during the day?
Jacks
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Giovanni
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Re: Topomax Driving me nuts please help
« Reply #9 on: Jan 18th, 2004, 9:23am » |
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Hi David,
Topomax drove me crazy too. I didn't know my own name---zombie. I had gotten lost on a familiar road one day--the last straw. Having said all of this, topomax has helped many people here that can tolerate its side effects.
Verapamil is another story. I think that it has helped many of us here. I am episodic so your best advise will come from others like you. Wishing you the best of luck.
John
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Roxy
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Re: Topomax Driving me nuts please help
« Reply #10 on: Jan 18th, 2004, 10:44am » |
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David,
I tried the topomax for a few months, and it didn't help my head at all, but I didn't notice any side effects either. The verap didn't help too much either, and I went all the way up to 720 mgs, before lowering the dose.
You might want to try the 02 again, and like Jackie says, get on the mask as soon as you feel your head starting. It also makes a very big difference in how you use the 02. Read the page to the left (02 button), and make sure you have the right mask and lpm.
You say that the imitrex pills aren't working for you either. The pills don't work for me, but the injections do. I split my injections into three shots.....makes them go further, and I get the same relief.
You might also consider reading up on the clusterbusters.com site. This has helped many people go totally PF.
Good luck,
Tracey
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toader
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Re: Topomax Driving me nuts please help
« Reply #11 on: Jan 18th, 2004, 10:59am » |
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David,
Man, my heart truly goes out to you. I've only been dealing with this for 2 months and I've never cried more in my life.
Please know that this is only a moment in time. There are people who care. Even if we can't be with you during the pain and agony - we are with you on this board. No suicide. You can do this. You can survive this moment.
The Topomax makes you dopey, more childlike and playful. I call it Dopeymax. I take 100mg 2x day. But if you go with it, it might actually help your mood. I got a bunch of those big Garfield books and I sit around and laugh my ass off. But whaever works for you - maybe 3 Stooges - try to put a lot more laughter in your life. It's good medicine too.
Have you tried the short acting Verapamil? My neuro had me on the long acting and when I moved to the short acting - BOOM - it kicked my night attacks way down and now I don't get them anymore. I take 240 mg every 8 hours.
You should use O2 at the first sign of oncoming attacks and nip it in the bud and use Imitrix injections when they get out of hand.
Please let us know how you are doing!!
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brad267
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Re: Topomax Driving me nuts please help
« Reply #12 on: Jan 18th, 2004, 11:40am » |
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David,
Topomax did the same thing, and I complained to my neuro until he did something. His first attempt was -- duh, more topomax. NO WAY!
We went to Zonegran AND Gabitril instead. Both are in the anti-epileptic category, but supposedly do the same thing for Clusters.
I have no complaints now. That was 9 months ago.
(As a side note: Was also on Wellbutrin, which made me a massively moody SOB. We changed that to Effexor, and that also did the trick)
Hope it helps!
Brad
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davidtx
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Re: Topomax Driving me nuts please help
« Reply #13 on: Jan 18th, 2004, 12:08pm » |
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I have been on Zomig with limited results and might be able to get o2. The problem is that I go to the doc and get all meds through the VA and if anyone knows about this they know how hard it is to get their attention. In fact, it took me over 6 months to get a neuro appt and then he seen me for less than 5 minutes. I still have some verap left, so I think I'm going to try and go back on this for a while and if this doesn't work in the next few days I will call the neuro next week to see if I can get on something else because the pain at this point is more unbearable than at any other point in the past three years. I appreciate all of the feedback everyone has given me. Thanks so much.
David
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Prense
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Re: Topomax Driving me nuts please help
« Reply #14 on: Jan 18th, 2004, 12:16pm » |
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on Jan 18th, 2004, 2:41am, davidtx wrote:I just start on Topomax about 6 days ago with 50 mgs for 4 days and then 100 mgs for the last 2 days and supposed to go up to 200 mgs eventually.
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David, you dosage is being increased too quickly for topamax. Side effects are avoided or at least minimized if you progress much slower. Something like 25mg/5 days, 50mg/5 days, 75mg/5 days, 100mg... You should not need to go higher than 100mg unless you are not seeing relief.
Keep in mind, your side effects will probably pass in time, but they will become less apparent if your doctor can back you up to the correct dosage schedule. Additionally, you need to taper in the same manner or you could open yourself up to seizures. Don't just stop abruptly!
Some people who dose up correctly still end up with side effects that they cannot live with. It happens...
Talk with your doc.
Chris
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davidtx
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Re: Topomax Driving me nuts please help
« Reply #15 on: Jan 18th, 2004, 12:26pm » |
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on Jan 18th, 2004, 8:41am, Jackie wrote:David,
How much lithium are you on?
Do you still have access to o2?
It's really important to get on the oxygen at the very first sign of a HA.....he who hesitates is lost so to speak. Maybe taking the imitrex pill and then getting on the 02 right away will help boost the imitrex. Blake has done that with Zomig and it seems to help. Zomig works best for him and lasts much longer than some of the other abortives....just our experience....every drug seems to be unique to the individual.
Are you getting hit mostly during the night or during the day?
Jacks |
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davidtx
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Re: Topomax Driving me nuts please help
« Reply #16 on: Jan 18th, 2004, 12:28pm » |
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Jackie:
I take 300 mg of lithium twice a day.
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davidtx
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Re: Topomax Driving me nuts please help
« Reply #17 on: Jan 18th, 2004, 12:35pm » |
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The really bad headaches started just before I started the 100 mg dose. I thought that since I had stopped the verap and was only at 50 mg for the topamax that I needed to then go up to the 100 mg dose as instructed by the doc. If I start feeling bad again tonight I will go back down to 50mg and call him in the morning. Unlike other CH I always get these at night. I would get other CH's at all times of the day including the middle of the night. Let me know what you think.
David
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Gunnar
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Re: Topomax Driving me nuts please help
« Reply #18 on: Jan 23rd, 2004, 11:36am » |
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Hi,
I am a chronic clusterhead too, and using topamax and Lithium for prevention. My dosage is:
50mg Topamax 0 - 0 - 3
450mg Lithium 1,5- 0 - 1,5
I have been experiencing the same you ve been describing above. It has been going away after ca. 6 weeks of therapy. So keep your head up. And raise the dosage in steps of 25mg, NOT faster... 25mg more every 7 days is fast enough.
To tell you the rest of my story: I was lucky with NO attacks at all for more than one month when from one moment to the other the devil raised his ugly head again. 3 to 8 attacks again per day. I was down on my knees, started to cry bitter tears and asking "why me?". Then I started to take Lithium, now I am back with no attacks since 10 days, hooooray. Lets see how long this works. But the side-effects of Lithium make me vomit 
better than CH however
Gx Gunnar
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pubgirl
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Re: Topomax Driving me nuts please help
« Reply #19 on: Jan 23rd, 2004, 12:24pm » |
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Hello David
Glad you are keeping us up to date, I was worried about you.
Couple of things:
The CH guru Goadsby says the slow release Verapimil is almost useless and always prescribes the quick acting for his patients.
Also as Roxy says, the WAY you use 02 is crucial (see info on link on the left as she says).
Key points though.
1.
It MUST be high flow. (for me at least 9l/min but I pump mine up to 12-15 l/min at the outset and abort everything within 10 minutes)
2. Use it straight away, don't wait to see how bad the pain is. HIT IT!
Also a tip that works for me, I wack in the oxygen and take a Zomig pill while I'm doing it (Imigran/trex pill also works) This picks up and kills any rebounds or aftermath headaches you may get from the 02, and for me, buys me a few hours sleep.
Hope all this helps
Wendy
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Tiannia
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Re: Topomax Driving me nuts please help
« Reply #20 on: Jan 23rd, 2004, 3:52pm » |
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Imitrex tabs really will not help as an abortive. by the time the tabs kick in you might as well not take them. call your doc and see if you cant get something else as an abortive. The injections work well for me or the nasel spray work well too.
Cant say if the topomax is actually helping with my CH or not but I have only been on it for 4 days and am only on 25 mg atm.
PF vibes to you. Please call your doc.
Tiannia
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MadMan
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Re: Topomax Driving me nuts please help
« Reply #21 on: Jan 26th, 2004, 4:58pm » |
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I started at 25 Topomax. Was on that for 6 months. The Beast burned through that.
Then upped it to 50. Was on that for 6 months. Beast burned through that.
Upped to 100. That lasted for another 6 months. I remember clearly it was Christmas Eve a year ago when the Beast burned through the 100. upped to 200, but that didn't stop the Beast. So on up to 300.
Been there for a year now.
Other than the burn throughs no pain at all, nor any shadows.
Only side-effects that remain are weight loss & a bad temperment. (I'm surly)
Good luck.
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| « Last Edit: Jan 26th, 2004, 5:00pm by MadMan » |
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