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Title: Anybody taking both Verapamil and Topomax? Post by K bogo on Dec 21st, 2002, 12:10pm 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by Bob P on Dec 21st, 2002, 12:20pm 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by Lenny on Dec 22nd, 2002, 12:45am I agree with Bob,the topomax turned me into a zombie, .Constant nausea,no energy,clueless to the world( not so bad ;D :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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Title: Re: Anybody taking both Verapamil and Topomax? Post by SommelierCH on Dec 22nd, 2002, 7:38am 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by K bogo on Dec 22nd, 2002, 1:57pm 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by vegas1002 on Dec 24th, 2002, 11:15am Happy Birthday today - I hope you are headache free! |
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Title: Re: Anybody taking both Verapamil and Topomax? Post by K bogo on Dec 25th, 2002, 2:29pm Thank you! Yes, I had a PAIN FREE day - yippee!!! :D |
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Title: Re: Anybody taking both Verapamil and Topomax? Post by domm on Dec 25th, 2002, 5:33pm Happy Birthday Kim ;D ;D (a day late) Really glad its been PF. Hope it lasts throughout the Holidays. domm |
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Title: Re: Anybody taking both Verapamil and Topomax? Post by diane on Jan 2nd, 2003, 10:45pm 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by Lenny on Jan 2nd, 2003, 11:42pm 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by Ueli on Jan 2nd, 2003, 11:46pm 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by K bogo on Jan 3rd, 2003, 11:08am 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 :D 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by justin on Jan 3rd, 2003, 12:20pm 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by nancyc on Jan 5th, 2003, 8:12pm 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by JB1234 on Jan 6th, 2003, 10:31pm :) 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by K bogo on Jan 7th, 2003, 9:58am 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 ;D. 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by NotH20 on Jan 7th, 2003, 11:21am 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 ;D 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 :D Hope you are feeling better... Mia PS - Happy Belated Birthday |
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Title: Re: Anybody taking both Verapamil and Topomax? Post by K bogo on Jan 7th, 2003, 6:50pm 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 ;D. 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by NotH20 on Jan 8th, 2003, 9:45am 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by cluster0557 on Jan 18th, 2003, 1:56am 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by MadMan on Jan 21st, 2003, 10:35am 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by NotH20 on Jan 21st, 2003, 2:01pm 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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Title: alternative therapies Post by diane on Jan 22nd, 2003, 5:00pm on 01/20/03 at 17:03:46, diane wrote:
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Title: Re: Anybody taking both Verapamil and Topomax? Post by pigeon on Feb 11th, 2003, 6:01pm 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by pigeon on Feb 11th, 2003, 6:15pm 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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Title: Re: Anybody taking both Verapamil and Topomax? Post by cluster0557 on Feb 12th, 2003, 9:34am Dianne, Constant headache is not that uncommon in clusterheads. I still have my headache 24/7. Indocin helped but could not get rid of it. Once I maxed the dose of indocin and it still did not get rid of my hemicrani continua headache I changed from Indocin to Celebrex. Numerous forums suggest Celebrex as alternative to Indocin. I have been on Celebrex for a little over a week and so far the Hemicrani continua has not reduced in severity or gone away. I am supposed to give it another week or two to see what happens. The are also checking my thyroid as a possible cause of the hemicrani continua headache. I will know more about that next week. Take care and I will update once I know more |
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Title: Re: Anybody taking both Verapamil and Topomax? Post by diane on Feb 13th, 2003, 5:56pm I also took celebrex for a while, but to no avail. Hopefully it will work for you! Have you ever tried alternative methods? I went to a chiropractor and I almost feel worse...or maybe just scared. The tension in my neck in shoulders could be from the constant headaches, or is it a way to keep me coming back to a chiropractor. I haven't been before and am a little skeptical, but I really am at the point to try anything....someone even suggested acupuncture = this sounds way out there for me, but has anyone else tried? diane |
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Title: Re: Anybody taking both Verapamil and Topomax? Post by cluster0557 on Feb 13th, 2003, 7:41pm I have tried acupuncture and chiro. Both wanted me drug free from all migrane meds and prevetatives. If I was n't chronic I would try them again but since I have been cronic for over a year I am not opening my pain window to alternate approaches and get slammed by a major cluster. |
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Title: kRe: Anybody taking both Verapamil and Topomax? Post by dizzyd on Feb 14th, 2003, 9:39am Hi Diane, I am new to this board only been here for a couple of weeks so I just came across this thread and the postings. I am amazed that is so common for clusterheads to get headaches 24/7...................my God, I have been dealing with this for months, I thought I was crazy and my doctors, my family nobody understands............I just can't believe that I am not the only one. When I am not having a cluster, I have a migraine, or tension headache or whatever kind of headache but always always a damn friggin headache. I was also on Topamax since July to January. At first no problems but as I kept increasing the dosage, the headaches were getting worse and worse and then BANG--- clusters were so severe and out of control I thought I was going to die. I tapered down and am now off the Topamax and back onto Sansert which I am having trouble getting but I will not get into that on this post. I am now only suffering from clusters........all other headaches went away. I am pretty sure that for some reason the Topamax was causing the headaches, docs are skeptical but I can't explain why else, nothing else changed in my life except the dosage of Topamax....so I am only left with that conclusion. I am not sure what you can do to control your headaches while trying to get pregnant. I was never able to do this I have been a chronic sufferer for a very long time and unfortuantely due to all the meds I ws never able to "clean" out my system long enough to have more children. I only have one child and that was before the clusters. After that pregnancy for some reason the clusters came on and never left. I wish you all the best and hopefully with the help of a some good docs you will be able work this all out. Keep reading there are so many suggestions for "natural" remedies, that maybe some of these will help you. DizzyD |
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Title: Re: Anybody taking both Verapamil and Topomax? Post by diane on Feb 16th, 2003, 7:29pm Dizzy D Wow, I got tears in my eyes reading your post. I really find myself getting depressed over my headaches, but knowing I'm not alone (or going crazy) somehow seems to help. I was sorry to hear that you were unable to have more children, but I'm sure your child is a blessing. Getting pregnant will be a miracle for me....the constant headaches really are a mood killer :P I haven't really researched the "naturals" because I have been to trusting that my MD's would cure me...7+ years later and now might be a good time. Thanks, for some reason your post really touched me. diane |
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Title: Re: Anybody taking both Verapamil and Topomax? Post by dizzyd on Feb 17th, 2003, 1:15pm Hi Diane, I am just now reading your response and I am so glad that you do not feel so alone now. For the longest time (22 years) I have felt alone with this. I have never known anyone who suffered clusters or from all the constant headaches that I do. It was only after finding this website and mesage board that I am finally able to communicate with other people who deal with this madness. Try not to get depressed, I know EXACTLY how hard that is as I have to force myself to face each day especially when the pain never ever stops...........and believe me it is very very difficult. Sometimes I can not stop the depression especially when you feel so alone BUT I try to console myself by knowing that other people have worse problems and diseases and that I'll be damned if I let the pain control EVERYTHING!! I have been on every medicine available for clusters as this has been going for 22 years.............I have also tried everything for migraines, I have tried biofeedback, I have tried ice, water, chiropractors, head massage therapy, you name it!!! Unfortuantely I do not respond well to alot the meds as the dosages are need to too high for my physical bodyand tolerance levels. I also find that alot of the meds increase all my other headaches and have yet to "stop" the clusters..........so I have stopped taking almost everything except the oxygen. I use alot of oxygen and after reading the posts here about that I am a little concerned about my overuse so I am trying to cut back on that too. Have you ever tried Sansert?? i know that you can not get it US anymore but it works for me really well. It does not put the clusters into remission but it has most definitely STOPPED ALL THE OTHER HEADACHES, and that is a major relief................I am getting the Sansert from a Canadian pharmacy...........takes a few days to get used to it but the other daily side effects are minimal. I understand about the long-term effects on the cardiac muscles/valves and am very cautious about that. My doc has me into cardiac ultrasounds every 6 months or after a Sansert stretch and so far everything is good. As a mother, wife, and working person I have tons of responsibilites and concerns and it can be so difficult, my husband tries to be understanding but it wears on him for me to always be feeling so crappy and well I try hard not to have my daughter see me sick all the time. She worries so much about it.......... Anyway, I hope things work out for you and understand that sometimes maybe you just need to clean out your system of all the meds and then start over again. Maybe cleaning out to get pregnant would be a good thing. Also the increase in estrogen during pregnancy may help your headaches too!! I know several migraine sufferers who were relieved during pregnancy although they did have a few strong bouts in the first 3 months, but after that they were much much better. Please feel free to e-mail me privately anytime your feeling down or just want to chat. I am not a doctor or any expert but I have many many years of personal experience with the pain of clusters and headaches and am a good listener. Be positive, enjoy the little moments in life, savoring even the small victories, they will help you get through. Take Care, DizzyD |
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