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Topic: Anybody taking both Verapamil and Topomax? (Read 1029 times) |
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K bogo
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Anybody taking both Verapamil and Topomax?
« on: Dec 21st, 2002, 12:10pm » |
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I haven't done too many posts, so I will quickly relate my history again: I am 30 (turn 31 on 12/24!) and have had eposodic clusters for 8 years from late Oct to mid Jan. I also have complicated migraines which only started about 2 years ago. Beginning last year (during a VERY bad unmedicated cluster season) the migraines started getting frequent and causing migraineous strokes. I now have migraines year round caused by barametric pressure.
I was diagnosed with the above last January and have been taking 240 mg Verapamil since then. (I also take Imitrex injections as an abortive and 50 mg tabs for migraines) This has tamed the Beast tremedously this season. When I went to the neuro on the 13th, instead of upping the Verapamil, he prescribed me Topomax 100 mg (2 25mg tab bed and 2 25 mg tabs morning - gradually working up to this dosage) AND 300 mg of Verapamil (3 100 mg tabs).
He said this combo should cut down more on the clusters (doing pretty good so far - lots of shadows and a few random hits) and help with the migraines also. Anyone else doing this combo of drugs - if so, do you you feel as ditsy/dizzy as I?!?!?!?!?!?
Bumps and Bruises,
Kim
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Bob P
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Re: Anybody taking both Verapamil and Topomax?
« Reply #1 on: Dec 21st, 2002, 12:20pm » |
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It's the Topomax. That stuff will make you stupid.
A little woozie at first and then you'll start losing your short term memory. Unfortunately for me, it made me dumber and didn't stop my attacks.
Whatever works.
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Lenny
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Re: Anybody taking both Verapamil and Topomax?
« Reply #2 on: Dec 22nd, 2002, 12:45am » |
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I agree with Bob,the topomax turned me into a zombie, .Constant nausea,no energy,clueless to the world( not so bad ;D  ;D )no help whatsoever from the beast !!! Have you ever tried Lithium?(works great with verapamil),its the only combo.that has ever helped me!! Good Luck and hopefully many PFDAN coming your way!!!!!!
Lenny
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yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead
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SommelierCH
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Re: Anybody taking both Verapamil and Topomax?
« Reply #3 on: Dec 22nd, 2002, 7:38am » |
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I found this, and it sounds scary to me.
Topomax ( Symptoms or Effects )
Common: Anxiety, depression, sedation, speech problems, double vision, abnormalities in vision, decreased appetite, impaired cognition, memory impairment, dizziness, impaired muscular coordination, tingling in the extremities, an unsteady gait, nausea, respiratory infections, or weight loss.
David J.
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K bogo
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Re: Anybody taking both Verapamil and Topomax?
« Reply #4 on: Dec 22nd, 2002, 1:57pm » |
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Thanks so much for all of your responses. The Verapamil has been doing great for my clusters. But now that I have the clusters slightly under my thumb (for now anyway), the migraines have been really throwing me for a loop. I wanted to ask about all this since I notice that many people with clusters also have migraines.
The Topomax combined with Verapamil seems to be helping some. The shadows have lessened (some days none and some days every 3 hours) and I have had only 1 hit (a 7) and 1 migraine in 9 days. It has gotten to where it is so hard to tell what works - not only are clusters tempermental depending on what "stage" or week I am in, but the Verapamil has really thrown off their rythem this year.
As far as the migraines, instead of having the stoke symtoms (speech problems, memory loss, dizzyness, feel "foggy" a few hours before and after the migraines, I have them every day all day from the Topomax! Not good for my job. I sound like a moron on the phone and feel as stupid as a box of rocks!
I stopped the Topomax last night - I just couldn't handle it. I'd rather have the shadows and the migraines. I am going to stay on the Verapamil - no real noticable side effects for me. Again, if there is anybody out there with both clusters and migraines and has a good combo for both problems - I'd love to hear about it.
As for anybody reading this and considering taking the Topomax, I was only taking 50 mg (was eventually supposed to be up to 100) and had all of the side effects mentioned in the above posts except for the depression/anxiety and respiratory infection. Pretty scarey stuff indeed!
Just curious, Lenny, are you taking the Verapamil/Lithium combo for clusters only - or for clusters and migraines? I agree with you on being "clueless to the world" - perhaps it isn't such a bad thing .
Thanks again for your help!
Kim
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vegas1002
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Re: Anybody taking both Verapamil and Topomax?
« Reply #5 on: Dec 24th, 2002, 11:15am » |
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Happy Birthday today - I hope you are headache free!
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K bogo
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Re: Anybody taking both Verapamil and Topomax?
« Reply #6 on: Dec 25th, 2002, 2:29pm » |
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Thank you! Yes, I had a PAIN FREE day - yippee!!!
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domm
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Re: Anybody taking both Verapamil and Topomax?
« Reply #7 on: Dec 25th, 2002, 5:33pm » |
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Happy Birthday Kim  ;D (a day late) Really glad its been PF. Hope it lasts throughout the Holidays.
domm
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diane
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Re: Anybody taking both Verapamil and Topomax?
« Reply #8 on: Jan 2nd, 2003, 10:45pm » |
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I am in such a similiar situation and wish I had some encouraging words. I had been "tolerating" life on nortriptylline for over 7 years becuz I failed all other meds for my clusters and migraines becuz of low blood pressure. Like I said, "tolerating" life wasn't very enjoyable, so I decided to try again with the neuro docs and they wanted to try adding topamax to the regimen. The starting schedule was tough. The numbness and tingling was bad, but the leg and hip pain brought me to an ortho doc (and this is a ?normal side effect? Other side effects included me being a constant airhead , my shower clogging with tons of hair, but since I have lost a few pounds, I still manage to smile. For the past 9 months I have been on 50 mg Topamax twice daily and 100 mg Nortriptylline. I have been ok - i still have clusters (pretty much a dull constant headache) but only 2 migraines in 6 months. Maybe Nortriptylline is an option for you to check in to,,,
I need some help on getting off the Topamax - I want to get pregnant and am not willing to risk it. Has anyone weaned off this med under the direction of a MD - i'm short on $$$ and am trying to research this without getting an outrageous bill. HELP - and good luck to those who are staying with these meds - hope they continue to work for all of you....
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Lenny
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Re: Anybody taking both Verapamil and Topomax?
« Reply #9 on: Jan 2nd, 2003, 11:42pm » |
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Diane,
All you have to do is call the pharmacy( make sure you get a hold of the pharmacist ) they know alot more than these fu..ing dr. regarding,as far as tapering off of meds.
As for myself i went cold turkey off of the topamax ( cant really tell you if i was sick from doing that ) i was in such a deep cloud and getting hit day and night from the beast. BTW the topamax did squat for me as far as the beast was concern. Lithium and Verapamil works wonders for me. Good Luck!!!!!!!!
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yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead
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Ueli
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Re: Anybody taking both Verapamil and Topomax?
« Reply #10 on: Jan 2nd, 2003, 11:46pm » |
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240 mg of Verapamil is a damned low dose for CH.
Dr. Goadsby recommends: Up the Verapamil until it kills the attacks or the side effects get intolerable or a maximum of 920 mg is reached. Doc Robinson said at the last convention: Clusterheads take Verapamil at such a high dose it would give a cardiologist a heart attack.
My opinion: Much a higher dose than 240 mg Verapamil should be tried before going to the mind bending anticonvulsants.
PFNAD's
Ueli
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K bogo
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Re: Anybody taking both Verapamil and Topomax?
« Reply #11 on: Jan 3rd, 2003, 11:08am » |
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Since I was only on the Topomax a couple of weeks, I did just quit the med cold turkey w/no apparent problem. I just couldn't function - I had bruises all over from being so dizzy and running into the wall or down the stairs. My speech was so messed up - I was not able to function at work or answer the phone. I really couldn't say how much the topomax with Verapamil worked - Clusters were fairly mild and sporadic and my migraines seemed less frequent. But for me, I am about at the end of my Cluster cycle and it could be coincidence.
Since my Cluster cycle is ending the doctor is giving me 300 mg of Verapamil (sustained release)as "maintainance" and he said this is also the same preventative med they give for the type of migraines I have. We will find out next season if this tames "the beast" enough. It also appears to be taking away some of the migraines. Because of fluxuating barametric pressure this time of year I get anyware from 12 - 26 migraine days monthly. Pretty much feel like crap all the time. Since the sustained release Verapamil, I "feel" like I am going to get the migraine - all the symptoms - no head pain. When I do get a migraine w/head pain, it is much more dull. I will be calling the dr. today to see what he has to say - he doesn't know I stopped the Topomax.
Keep your chin up, Diane. I know it is much easier said than done. Hopefully someone here can give you some advice on what type of med could help you since you have a blood pressure problem also. You certainly don't want to have to rely on Imitrex as an abortive thru your pregnancy. On the bright side, I did not have any Clusters and had only had very few "headaches" while I was pregnant both times (and was not taking preventatives). Hopefully, this will be your luck also! Soon after the baby, though, clusters hit me - big time. This can be a problem if you are going to breast feed and are needing medication. So much to consider.........
Kim
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justin
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Re: Anybody taking both Verapamil and Topomax?
« Reply #12 on: Jan 3rd, 2003, 12:20pm » |
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my neuro suggested verapamil and depakote. depakote is the same type of drug but some docs feel it doesn't have all those horrible mental and physcial side effects. really the only problem i have had with the depakote is some weight gain. i take 240mg verap in the morning and 240 at night. i was taking 1000mg of depakote at night. the extended release but have just recently bumped it up to 1500mg when i started getting a few breakthroughs. but other than a handful of breakthroughs my chronic cluster has ceased. yeah!
jd
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if any clusterheads in NYC want to get together shoot me an email justinott@mac.com
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nancyc
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Re: Anybody taking both Verapamil and Topomax?
« Reply #13 on: Jan 5th, 2003, 8:12pm » |
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Topamax was a mind blowing drug for me...could not think, function or anything on it...verap had no side effects other than being alittle tired and constipated...smiles, nancyc
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JB1234
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Re: Anybody taking both Verapamil and Topomax?
« Reply #14 on: Jan 6th, 2003, 10:31pm » |
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 I sympathize with your pain, and your plight for a cure. I was on Topamax, too. I had to get off of it right away. Within 10 days I could barely do my job for losing my memory and the difficulty just articulating a simple thought.
I'm blessed enough to have a neurologist who is very compassionate, caring, and dedicated to researching and curing cluster headaches specifically. She has me on a new medication called Zonegran (zonisamide) at 100mgs a day. She said anything much higher and I could have noticeable side effects. I haven't been on it long enough to give you a yay/nay on it's effectiveness, but I'll keep the site posted. She also happens to be working with the clinical trials that are mentioned on this page and I'm signed up for that if this doesn't work.
I wish you the best. Hang in there. Regards.
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K bogo
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Re: Anybody taking both Verapamil and Topomax?
« Reply #15 on: Jan 7th, 2003, 9:58am » |
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I had tried the depakote a couple of years ago before being diagnosed with clusters. I was only taking it by itself - and it didn't help me with the clusters or migraines. But now that I am taking Verapamil on a permanent bases, I wonder adding the Depakote would help me also? Am I allowed to "suggest" this to my doctor . The weight gain side affect has me a little paranoid, though. Are we talking a couple of pounds - or a FEW pounds - just curious. But when it comes down to it - it is really whatever works!
JB1234, your neuro sounds fabulous! Wish I had a doctor so dedicated to cluster research - a rare find.
Thanks,
Kim
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NotH20
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Re: Anybody taking both Verapamil and Topomax?
« Reply #16 on: Jan 7th, 2003, 11:21am » |
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Hey Kim - I am replying a little late, but wanted to put in my two cents also.
I was on both Topomax and Verap during my last cycle. Everyone here is correct that it's really a nasty medication. The weight loss was wonderful though
There is another anti-seizure med (Keppra) that sometimes works for the ch's. Not sure about the migraines. It's not a strong medication to your system and is much safer than Topomax. You may ask your doc about that.
You may want to talk to your OB before starting to get pregnant and find out how long you should wait to make sure that all the meds are out of your system. Good luck to you with this endeavor
Hope you are feeling better...
Mia
PS - Happy Belated Birthday
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K bogo
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Re: Anybody taking both Verapamil and Topomax?
« Reply #17 on: Jan 7th, 2003, 6:50pm » |
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Thanks, Mia - I will look into Keppra also. Hey, you freaked me out on the pregnancy thing - nobody here trying to have another baby - he, he, he . Think you might have gotten me mixed up with Diane's post. Seriously, though, right now I am doing good - my Clusters appear to be over for this season - I haven't had an attack in 6 days! Now it's just the migraine thing. I can't imagine how people with chronic clusters cope day to day. Mine only last approx 3 months and there are days that I literally don't think I am going to make it through to the next morning. It's only thanks to my trustie punching bag, family, and the great posts on this site that enable me to make it
Kim
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NotH20
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Re: Anybody taking both Verapamil and Topomax?
« Reply #18 on: Jan 8th, 2003, 9:45am » |
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Oops Kim - sorry about that Yes I did get confused - and I can't even blame it on meds at this point! LOL
Glad to hear that things are looking up for you right now.
Mia
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cluster0557
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Re: Anybody taking both Verapamil and Topomax?
« Reply #19 on: Jan 18th, 2003, 1:56am » |
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Topomax is what is causing the problem.
My symptoms where similar to yours and now I am on 240 mg Verapamil 3 x daily and 75mg Pamelor. Not fuzzy and the beast is tame for now.
I also use 25mg to 75 mg Indocin to deal with hemicrania continuum headache.
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Pain is Inevitable, Suffering is Optional
Life is too short so push thru the _amn pain.
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MadMan
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Re: Anybody taking both Verapamil and Topomax?
« Reply #20 on: Jan 21st, 2003, 10:35am » |
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I'm new to these Boards so I hope I'm doing this right.
How much Topomax are you guys taking that you are getting these side affects? ( The dizzies, speech deffects, memory loss, ect)
I just upped my dose to 300mg a day. What can I look forward to?
& btw: it hasn't stopped the Beast all together. He's still lurking out there!
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What Me Worry
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NotH20
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Re: Anybody taking both Verapamil and Topomax?
« Reply #21 on: Jan 21st, 2003, 2:01pm » |
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MadMan - you can look forward to not driving. Sorry, but I wasn't able to drive - way too dizzy and uneasy on my feet. My fine motor skills were affected too.
But I believe the combo that I was on between that and the DHE IV drip actually stopped my cycle - so I would do it all over again to get the relief that I've gotten....
Good luck to you and keep us posted on your progress...
Mia
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diane
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alternative therapies
« Reply #22 on: Jan 22nd, 2003, 5:00pm » |
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on Jan 20th, 2003, 5:03pm, diane wrote:Jim mentioned hemicrania as continuum headaches - is it possible that I am not the only person that has a headache that never goes away? My neurologist looks at my look I'm crazy when I say I live with a 24/7 headache. My family just thinks I am a chronic complainer..."no one could possibly have a headache as often or as long as you do." Wow! This Post has really opened my eyes - Thank you....Jim is on Indocin - I failed this drug due to low blood pressure. I was on Nortriptylline and Topamax and was tolerating my clusters, but the dull continuous headache never went away - has anyone ever tried any alternative therapies? (chiropracters, acupuncture, chelation, etc...) I am going on a drug holiday to attempt to get pregnant and need to do anything besides medication...I am desperate! diane
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pigeon
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Re: Anybody taking both Verapamil and Topomax?
« Reply #23 on: Feb 11th, 2003, 6:01pm » |
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diane- My cycle started on Nov. 1st, I started with 50mg topamax daily coupled with indocin as my meds.
I maxed out at 300mg topamax daily for about the last 1 1/2 months. I'm tapering off now, first 200mg for 3 days then -25mg each 3 days following(175,150,125,etc). Shadows are still present, but seem to be fading, hopefully the beast will not return any time soon, I need a cold frosty.
Good luck
Joe P.
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pigeon
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Re: Anybody taking both Verapamil and Topomax?
« Reply #24 on: Feb 11th, 2003, 6:15pm » |
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Madman- 300mg of topamax sux, there is no disputin' that, I was on that dosage for about 1 1/2 months. The side effects are real, you don't even realize because your head is not what it use to be. We all react different to the side effects, You gotta fight thru the fog in your head, driving is definitely tougher. Start carrying a notepad, keep track of realevant things, I would take my meds and forget 20 minutes later, write everything down. Keep fighting, the beast and the meds are enough to break anyone, the topamax got me out of my last cycle and it seems like I am at the end of another. Hopefully your lifestyle will allow you some stupid moments.
Good luck
Joe P.
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