Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
Is My Medicine Working??? Please give feedback!!! (Read 953 times)
CHsRtheDeviL
CH.com Junior
**
Offline


Kill The Beast!!!


Posts: 70
Downers Grove
Gender: male
Is My Medicine Working??? Please give feedback!!!
Sep 21st, 2011 at 3:06am
 
Whats up people, I've been taking Topamax for almost 4 weeks now and Verapamil for 5 days and since last Friday which is when I had my really last bad attack it was like a 9-10 2 hour ordeal it sucked a lot.  Anyways, since than I've had about 4 very minor attacks. None the rest of the day fri, sat, and sun night i got a 15 minute attack that was not that painful at all just more annoying than anything.  Than on Monday I got one around 12pm about an hour after I normally get them and this one was also very minor and short lasting. To keep it short I got one Tuesday afternoon as well, also very minor.  Its 2am now and none since the one earlier.

The wierd thing about these attacks is that they'll be pulsing, you know, with the pain, and literally i'll feel them pulsing and then like 5 seconds later I'm totally PF and the attack is gone.  Almost like it was just aborted all of a sudden. 

Now my cycle always starts in the beginning of July and always has ended by end of September or right in the beginning of October which is now pretty much.  I want the cycle to be over, but even more so I kind of want it not to be and the medicine I'm taking to actually be working instead so I know that I have finally found something to help me out in my time of need.

Please I need feedback on this I know theres lots of you out there who have taken Verapamil and Topamax, seperate, or together.  I need to now how it effected you and if what I explained at all sound like this stuff could actually be working.
Back to top
  
 
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: Is My Medicine Working??? Please give feedback!!!
Reply #1 - Sep 21st, 2011 at 6:53am
 
You do realize that there's no way for us to know, right? There's no way for even you to know if it's the natural end of your cycle or if it's the meds.

Rule of thumb: Once you are pain free for 2 weeks, start to taper off the meds. It's the only way you'll know which one it is. Be ready to get back on the meds.
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
IP Logged
 
wimsey1
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 2457
MA
Gender: male
Re: Is My Medicine Working??? Please give feedback!!!
Reply #2 - Sep 21st, 2011 at 8:14am
 
Brew's right, there's no way to "know" except with time, and even then you won't know if it was the end of the cycle or the meds. Unless you drop the meds and it all goes bonkers. Then you'll know. The goal here is to get pf and you're doing that.

As to the topomax, I hated it, and it did me no good whatsoever. The verapamil is a different story. Over the years (35 years) I found three different necessary threshholds: at first, 240mgs/day worked. Twenty years later I needed 400mg/day. Three years ago, I needed 640mg/day. It was effective in each instance but only a tree stump would miss the operative ingredient here: it seems I need increasing amounts over time. Hope it's not so. I'm currently backing down (again) hoping to find a lower threshhold. Anyway, good luck and God bless. lance
Back to top
  
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Is My Medicine Working??? Please give feedback!!!
Reply #3 - Sep 21st, 2011 at 9:37am
 
Pulsing and other such variable experiences, are common to Cluster and have no significance. Some feel the pulse with a stronger attack but exceptions rule.

Verap. takes couple of weeks to become fully effective and even then a dosage adjustment is not uncommon. So, too soon to make a judgment.

My read on Top: so many folks complain about the mental foggy side effect that I'd prefer the aggressive dosing with Verap--alone--and adding another med if it doesn't do the job.

See PDF file, below. Might print it out and use as a tool to discuss options with the doc.
====
Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

Back to top
  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
IP Logged
 
jon019
CH.com Alumnus
***
Offline


"Ya gotta believe!"


Posts: 1656
USA
Gender: male
Re: Is My Medicine Working??? Please give feedback!!!
Reply #4 - Sep 21st, 2011 at 11:20am
 
Hiya,

What you describe is very familiar to me. YMMV

The end of a cycle...when episodic...was always proceeded by the hugest hit of any. Bad as they were, I used to pray for the "killer".

Pulsing was also welcome. My hits are the typical boring, piercing pain...pulsing only happened at the end of a hit...and actually hurt worse... but were a true indicator that the hit would be over within minutes.

Topomax didn't do a dang thing...and the side effects were truly scary....for me. It does work for others.

Currently on verapamil....960 mg/dy in 3 divided doses. As Lance indicated, I have also found I have had to increase the dosage over the years (30). 

Sounds like you have an aggressive doc...not a bad thing...but I agree with Bob. One med at a time...given a fair shot...or you'll never know which was effective...and you may unnecessarily be stuck taking both.

Brew is right...taper down and see what happens. Some of us do the "beer test" to confirm.

Best,

Jon



Back to top
  

The LARGE print giveth....and the small print taketh away.    Tom Waits
 
IP Logged
 
B.Baer
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 154
Northeast Pennsylvania
Gender: male
Re: Is My Medicine Working??? Please give feedback!!!
Reply #5 - Sep 21st, 2011 at 10:40pm
 
I agree with all the above, could just be the natural end of cycle... We really never know for sure.

I too am "Old School" and go for the beer test... I set out two beers and drink one... if in a reasonable amount of time I don't get hit... I drink the other in celebration... If I get hit, I drink the other one anyway, at that point the damage is done and I might just as well have the second....  Wink I do however stop after that, as Mother Baer didn't raise no fools..... Grin

Not to make light of it, but that is my preferred test and I continue to do it with all cycles....

All the best,

Baer
Back to top
  
Barry Baer  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!