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K bogo
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Medication Questions ...
« on: Dec 10th, 2002, 11:51am »
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Hi everyone - I am new here and just wanted to say THANK YOU to all of you "experienced" clusterheads who post here.  Thanks to you, I was able to diagnose myself last year after 7 years of drug addict/your insane allegations.  Armed with many print-outs from this site and a headache chart, I took it to my neurologist who then confirmed that I do indeed have seasonal clusters and, lucky me, year round migraines.  Upsetting, but a huge relief to know what the heck was wrong with me.  Apparently, I don't fit the description/lifestyle of what doctors think a clusterhead ache sufferer should be.  ???  
  Anyway, I am taking  Verapamil ER 240MG in the evening.   It is certainly helping me.  I usually have the clusters bad Oct thru Jan and an occasional jab throughout the year.   I started getting them again this year but am sooooo fortunate -(no Imitrex shots!)- only hitting a pain level 1 to a 5 so far.  Right now, they are lasting from 15 min to 1 hr.  and coming about every 2 to 4 hours.  I called my doctor to see if he would up the Verapamil for me and instead he called in a perscription for Veralin (sp?) 100mg pills- three at bedtime.  First he wanted to give me Midrin, but I begged him to keep me on Verapamil since I am confident it is working.  He said the perscription he called in is a derivative of Verapamil.  Anybody know anything about this?
  Also, I had to go to the Dr. a couple months ago because of a lump on my breast.  It turned out to be just a cyst - no big deal at all.  My husband was hoping I was growing a third boob  Wink  - poor him, I wasn't.  Anyway, the doctor said the Verapamil could be causing these.  Anyone ever heard of this?
  Okay, one more thing.  Does anyone else have a problem with depression/dizzyness/speach delay during their cluster season?  I guess I am curious as to whether it is my migraines or the clusters that are doing this to me.  I am normally a very energetic person.  Since Oct. I started getting flashes of depression lasting just a few minutes - yesterday it lasted 8 hours.  (I do not want to be on antidepressants!!!!)  Maybe it is not depression, I don't know.....it is like I am in some kind of trance - I just don't care about anything at all - not even work.  I don't have anything to be depressed about - this is the best cluster season ever and life is pretty darn good!
  Thank you so much for listening to me ramble on and on.  I go to the neurologist 12/13 and hopefully someone here will give me some good advise  Kiss.  
   
 
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Riccardo
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Re:  Medication Questions ...
« Reply #1 on: Dec 10th, 2002, 12:02pm »
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Talking about depression.... clusters deal with serotonin levels, depression ...the same.
 
Many doctors think that depression may be a "side effect" of clusters, less doctors think that depression may cause clusters (I personally disagree with this last one).
 
Anyway, the level of serotonin act on both sides.
 
Note! I'm not tellingl you are depressed! I tell you have the depression symptoms (is quite different)
 
About the meds... I'm not the right guy that can help you .... I'm Italian (and live in Italy) so the names are quite different. I can only say that your Verapamil dose is very low (the average is 480, with peaks of 960 mg/day) so, if it function..... is a very good thing.  
 
I don't remember that Verapamil create lumps.....except in your ....bowel  ;D (constipation)  , dizzyness.... may be (few have it from Verapamil, but I'm one of these)
and speech delay can be related to the same cause of depression.
 
Ciao from Italy
« Last Edit: Dec 10th, 2002, 12:21pm by Riccardo » IP Logged

Riccardo OUCH-Italia
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Re:  Medication Questions ...
« Reply #2 on: Dec 10th, 2002, 3:47pm »
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K b - I take Verelan PM, which is a sustained release version of Verapamil. If you are in cycle, it probably would be better to get the standard old instant release Verapamil. It seems to work better for most. Since I am out of cycle, I take it as a maintenance dose.
I've never heard of lumps developing anywhere as a side effect of Verapamil.
I think Riccardo is right about CH and depression. Both are tied up with serotonin levels and it is not uncommon for CHers to be or have bouts of depression. Riccardo and others have found some relief using SSRIs like Paxil.
Welcome to the board and read everything you can. You'll know more about this than most doctors.
Good luck
domm
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K bogo
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Re:  Medication Questions ...
« Reply #3 on: Dec 10th, 2002, 4:32pm »
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Riccardo and Domm,
  Thanks so much for the info.  I thought that my Verapamil dose was low - but at least I am getting relief.  It seems, according to the survey on this sight, that Verapamil seems to be the best bet on preventative meds.  I am going to strongly suggest to the doc that he keep me on it - just a little bit stronger.  I am just taking it at night.  Since you said this is instant release and I am in the middle of the CH cycle, should I be taking it throughout the day instead of once per day?  My last Dr visit, he wanted to change me to Topomax because of the migraines, but I told him I would take migraines all year 24 hrs a day over the Clusters.  Topomax is a migraine preventative only, correct?  Anyway, the Verapamil works and I would like to leave good enough alone.  Perhaps some docs just can't imagine that a "cheap" med can actually do some good!  Undecided
  Sorry others go thru the depression thing, but it is nice to know it is "common".  I certainly don't like to talk about it much since there is such a sterotype linked to the word.  I did break down and use Paxil last year during my cluster cycle.  It was a horrible cycle - lots of 9 and 10+.  I believe the Paxil saved my sanity.  The down side was that I felt completely numb emotionally and couldn't hardly stand to get out of the house.  Plus, not much interest in sex.  Right now I don't feel like being social, but it comes and goes with my episodes of depression.  
  Oh, also thanks for the insight on lumpy intestines.  Way too much info!    Grin  Strangely, I am more interested in a lumpy boob, ha, ha.
  Kim
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Re:  Medication Questions ...
« Reply #4 on: Dec 10th, 2002, 6:56pm »
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Kim - if you are on Verelan - it is not instant release. Ask your doc to change it to one of the instant release varieties, and yes you should split the dose throughout the day to maintain a certain level in your system. When I started my cycle, I used the instant release type in three doses, breakfast, mid afternoon and bed time. What dosage works for you is going to be found through trial and error. Remember it takes 7 to 10 days to build up in your system before it really kicks in. Many docs prescribe a seven day course of prednisone and verapamil. The pred kills the cycle and as you taper off it, the verap kicks in, keeping the beast at bay.
I haven't tried Topamax, but many here have. Good and bad reviews. Do a bit of research on it - search button upper right and try *topomax*. You might also read thru Riccardo's post on paroxidine (paxil). He took it for a week or two and tapered the dosage off to break his cycle.
What works for one does not always work for someone else. You will find all kinds of alternate methods here to ease the pain. Some work, some don't. Since no one knows the cause of this damn horrid condition, there is no cure. Only what works for you.
Good luck in finding the right set of stuff that works for you.
domm
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K bogo
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Re:  Medication Questions ...
« Reply #5 on: Dec 11th, 2002, 11:45am »
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Domm,  
 Thanks for the advise.  I tried the search here several times, but can't get it to work.  I will try again later.  so many questions.....
  As far as the Paxil goes, maybe it did help, but I was in too much of a daze to know.  The problem was that by the time I started the Paxil, my CH cycle was already on the downward spiral by itself.  I figured this out by looking at my "headache" chart from last year.  I starting the CH's the end of October and went to 4 different doctors for a total of 12 visits by December (couldn't get an appt w/neuro until end of Dec.)-  still undiagnosed.  The 1st week of Dec. appeared to be "peak" for me - the second week of Dec. one doctor put me on Paxil because I was on the verge of a breakdown - in every sense of the word.  By the time the Paxil kicked in, my CH's were already lessening on their own. Then FINALLY, my neuro appt the third week of Dec. - along with my diagnoses, the Imitrex injections, Verapamil and Soma.  The CH's lessened dailey until they disappeared on Jan 13th.  I went off Paxil on my own the first week of Feb.  Guess I don't really know if anything in particular helped, or if it was just the timing.
  Thanks again for all of your insight! Kiss
Kim
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Re:  Medication Questions ...
« Reply #6 on: Dec 11th, 2002, 5:39pm »
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Kim - your experience is common for many of us. We're in so much pain, we'll try anything and if it doesn't have immediate effect, we'll pile more on top, etc. Until they finally go away and then we're not sure which of the meds or methods actually worked.
Doc Goadsby is considered one of the experts in CH and migraine for that matter. Here's his website. Also try the OUCH site (button on the left) There is tons of info there. Good luck
 
http://www.ion.ucl.ac.uk/~headache/headache.html
 
domm
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Mark C
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Re:  Medication Questions ...
« Reply #7 on: Dec 11th, 2002, 8:08pm »
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Welcome Kim,
I am glad the Beast has decided to leave you alone for a while. There is not much I can add to the previous posts...all good advice. I have attached a link for a HA Diary that may help you figure out which Meds are effective. Like Domm said, we tend to pile on the Meds  
(I do) and then can't be sure what, if anything worked.
Good luck,
Mark
 
http://www.headachepainfree.com/headache_diary.htm
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K bogo
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Re:  Medication Questions ...
« Reply #8 on: Dec 11th, 2002, 8:54pm »
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Thanks again for all the info.  I checked out and joined the OUCH site - it's great!  I had done some research on OUCH last year when times were bad.  Unfortunately, when I am pain free 9 months out of the year, I think I subconsciencely (sp) avoid all sites that have any info on Clusters.  Maybe that will make them go away forever.........??????  Undecided  Guess that didn't work!  Anyway, this year I am going to be more supportive and am very interested in the convention that was mentioned.  Quick question - my mind is QUITE fuzzy - did I read correctly on the OUCH site that it has some roots in TX?  But then under the donations tab, the checks are to be mailed to CA.  Just curious, not that it matters.
  I also looked into the headache chart you gave me a link to.  Very good - up to now I just write everything down in a notebook - that way I have enough room to to rant and rave a little Kiss  Sometimes it just feels so darn good to complain to myself!!
Kim
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K bogo
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Re:  Medication Questions ...
« Reply #9 on: Dec 11th, 2002, 8:58pm »
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Sorry about all those Smileys - I think my keyboard stuck!  Whata wacko!
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Re:  Medication Questions ...
« Reply #10 on: Dec 12th, 2002, 11:32am »
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Kim
To do a search use the SEARCH button under the words Clusterheadaches.com in the upper right of the page. It should take you to the "old" message board archive.
 
The SEARCH button under the words Message Board won't get you much because the "new" messages are not in the archives.
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K bogo
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Re:  Medication Questions ...
« Reply #11 on: Dec 13th, 2002, 9:19am »
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hmmmmmm.....must be my computer.  I tried the search again and although the bottom of the screen says "transferring document" and then "done"  I am brought to a blank page.  I will keep trying though.
Kim
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