Hi,
I have suffered with CH since 2002. I have gone down the med route four times now using predensone then verapamil it has worked with increased dosages each time. I have just started a new cycle and have been thinking of only using imitrex this time around without starting the rest of the meds. Has anybody out there tried this? Whats it like? do you have a shorter cycle? Does the imitrex continue to be effective. Taking 6 mg injections what happens when you get hit more than twice a day. Looking for any information on just using imitrex without starting preventives.
Thanks and I wish everyone PFD
Jerry

Jerry_M wrote on Apr 14^th, 2009 at 3:12pm:

Hi, I have suffered with CH since 2002. I have gone down the med route four times now using predensone then verapamil it has worked with increased dosages each time. I have just started a new cycle and have been thinking of only using imitrex this time around without starting the rest of the meds. Has anybody out there tried this? Whats it like? do you have a shorter cycle? Does the imitrex continue to be effective. Taking 6 mg injections what happens when you get hit more than twice a day. Looking for any information on just using imitrex without starting preventives. Thanks and I wish everyone PFD Jerry

How bout oxygen as a first choice?

      Kinder gentler Potter

I have used oxygen in the past, it works to stop the attack if started early enough, however, I feel that oxygen just pospones the pain. Everytime I have used it to stop an attack, i feel that the next attack comes sooner and is more painful and I think its because of the oxygen, kind of like the beast is so pissed that you stopped it, it comes back with a vengence
Jerry

Jerry_M wrote on Apr 14^th, 2009 at 3:25pm:

I have used oxygen in the past, it works to stop the attack if started early enough, however, I feel that oxygen just pospones the pain. Everytime I have used it to stop an attack, i feel that the next attack comes sooner and is more painful and I think its because of the oxygen, kind of like the beast is so pissed that you stopped it, it comes back with a vengence Jerry

Then huff more oxygen.

         Kinder gentler Potter

Continued use of imitrex only as an abortive turned my cycle into an unending hell.  Imitrex can cause rebounds, and when I stopped using it, my cluster headaches were not near as frequent or as severe on the Kip scale.  

Check out the Oxygen info highlighted on the left.  There have been changes and improvements.

Beth

midwestbeth wrote on Apr 14^th, 2009 at 3:32pm:

Continued use of imitrex only as an abortive turned my cycle into an unending hell.  Imitrex can cause rebounds, and when I stopped using it, my cluster headaches were not near as frequent or as severe on the Kip scale.   Check out the Oxygen info highlighted on the left.  There have been changes and improvements. Beth

I second that advice.  :)

Ray

I don't grasp why you would not use Verap when your experience with it has been good. For long term use it's easier on your body than Imitrex several times a day, not to mention cost.

Print this protocol and see what you doc thinks. This has become a widely accepted plan.
-------

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).

Wow, I just checked the oxygen page and your right it has changed alot, with alot more information. I do however use the oxygen correctly at 15lpm and the use of a clustermasx, as I said before I have had it work fine but I always feel that it just postpones the pain and that I get more hits using the oyxgen. As far as the verapamil, I have found that each cycle seems to get longer and longer, my first was about 30 days long my last was over 4 months and I'm wondering if the meds might be making the cycles last longer, thats why i'm thinking about changing things this time
Jerry

Try using oxygen again, but this time, use a HIGHER flow rate, than the 15LPM ... It has worked wonders for many.

Oxygen is SO much better for your body, and costs SO much less.  Give it a shot again!

Chuck

Potter wrote on Apr 14^th, 2009 at 3:29pm:

Jerry_M wrote on Apr 14th, 2009 at 3:25pm: I have used oxygen in the past, it works to stop the attack if started early enough, however, I feel that oxygen just pospones the pain. Everytime I have used it to stop an attack, i feel that the next attack comes sooner and is more painful and I think its because of the oxygen, kind of like the beast is so pissed that you stopped it, it comes back with a vengence Jerry Then huff more oxygen.          Kinder gentler Potter

you really have to huff it. i used 25 lpm and i could have used more. i can't give you any advice on any of the meds but if you do try to use imitrex give it a week or two before you make a decision on using it solely . always use o2 for aborts if possible. i put allot of faith in batch's o2 research. be sure to check out some of the o2 links or send one of us a pm if you need help with it.


             

ClusterChuck wrote on Apr 14^th, 2009 at 4:50pm:

. Oxygen is SO much better for your body, and costs SO much less.  Give it a shot again! Chuck

yeah, and it won't give you a heart attack either. if you have a question about o2 post it. don't be bashful. ;)

Another consideration......I'm like you in that the attacks would come back about 10-20 minutes after shutting off the 02. Now I pop an oral cafergot when I fire off the 02. The 02 beats it down, the cafergot buys me up to 12 hours pain free time.

I'm one who is convinced imitrex extended my last cycle, and have read enough of others concerns to reinforce that belief. I haven't ever heard of a concern with verapamil extending a cycle. The other problem being the beast morphs so danged often that establishing cause and effect is a crap shoot at best!!

Joe

To answer the question you asked-and not attempt to lecture you like others seem to enjoy doing so much here.

YES. I have experience with this.

I too have had success with Verapamil, and Imitrex Injections.

In my case, if I DON'T use the verapamil, the Imitrex will not work as good, and In my case, I had the attacks keep coming back after about every three hours when I did'nt use the Verap..
If you attempt to treat yourself with Imtrex only, my bet is this would happen to you also.

Take the verapamil, and use the Imitrex as usual.

Again, in my case when I cut out the Verap, the Imitrex works still, but the attacks keep coming and keep coming, and the Imitrex, in my case, even worked less effectively.

The verap is a med that usually keeps the attacks to a minimum, and when one does get through. The Imitrex should take care of it.

I would NOT reccomend stopping the Verapamil.

I hope that was helpful.

DannyV wrote on Apr 16^th, 2009 at 9:35am:

To answer the question you asked-and not attempt to lecture you like others seem to enjoy doing so much here. YES. I have experience with this. I too have had success with Verapamil, and Imitrex Injections. In my case, if I DON'T use the verapamil, the Imitrex will not work as good, and In my case, I had the attacks keep coming back after about every three hours when I did'nt use the Verap.. If you attempt to treat yourself with Imtrex only, my bet is this would happen to you also. Take the verapamil, and use the Imitrex as usual. Again, in my case when I cut out the Verap, the Imitrex works still, but the attacks keep coming and keep coming, and the Imitrex, in my case, even worked less effectively. The verap is a med that usually keeps the attacks to a minimum, and when one does get through. The Imitrex should take care of it. I would NOT reccomend stopping the Verapamil. I hope that was helpful.

 And oxygen as your abortive.  

    Kinder gentler potter

DannyV wrote on Apr 16^th, 2009 at 9:35am:

and not attempt to lecture you like others seem to enjoy doing so much here.

LECTURE?  

Maybe occasionally we do, but MOST of the time, we are trying to help a person and pass along information, NOT (as YOU seem to think) lecture.

It is called "pay it forward" ... Pass on the information that you have learned to someone who doesn't know about it.  It is also called helping your fellow sufferer.

Chuck

Jerry_M wrote on Apr 14^th, 2009 at 3:12pm:

Hi, I have suffered with CH since 2002. I have gone down the med route four times now using predensone then verapamil it has worked with increased dosages each time. I have just started a new cycle and have been thinking of only using imitrex this time around without starting the rest of the meds. Has anybody out there tried this? Whats it like? do you have a shorter cycle? Does the imitrex continue to be effective. Taking 6 mg injections what happens when you get hit more than twice a day. Looking for any information on just using imitrex without starting preventives. Thanks and I wish everyone PFD Jerry

Hi Jerry,
There was a time I was only using Zomig nasal spray (a different triptan.)  I found it worked pretty good most of the time.  I did not find I got a lot of rebounds from Zomig, but there were those days that you are asking about.  After using two doses and getting hit again you just do what you can...Nothing is 100% guaranteed.

Thomas

ClusterChuck wrote on Apr 16^th, 2009 at 12:30pm:

DannyV wrote on Apr 16th, 2009 at 9:35am: and not attempt to lecture you like others seem to enjoy doing so much here. LECTURE?   Maybe occasionally we do, but MOST of the time, we are trying to help a person and pass along information, NOT (as YOU seem to think) lecture. It is called "pay it forward" ... Pass on the information that you have learned to someone who doesn't know about it.  It is also called helping your fellow sufferer. Chuck

Chuck,
I know you are offering help, and disagree with Andy, but I see his point.  I am sure I am not the only one that disagrees with you on this either.  Yes, getting the info about O2 out there is important and it does help a lot of people, but Jerry did ask specifically about a med and the first response was Oxygen.  It gets to a point where it gets out of control.  I think he got the point, Because he said so, and it still continues on...  Some people just do not let up... It gets to be a nuisance.  Does it need to be said three times by the same person???
It only takes one bad apple to spoil the oxygen...

Just my 2 cents
Thomas