Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Fresh Research - Overview, nothing new
        
(Message started by: floridian on Jan 22^nd, 2004, 11:40am)

Title: Fresh Research - Overview, nothing new
Post by floridian on Jan 22^nd, 2004, 11:40am

Nothing really new in this abstract that just appeared on PubMed. It includes a description of the symptoms, and mentions therapies for aborting and preventing clusters. The wording seems to oversimplify a bit - only two proven drugs for aborting (subcutaneous sumatriptan, oxygen), verapamil for episodics, lithium for chronics. Lots of other therapies should have been mentioned or alluded to - what about nasal triptans to abort, naratriptan, magnesium or melatonin to prevent, etc, etc.. Atleast it reinforces the idea that oxygen should be a first line therapy.

Quote:

Ann Med Interne (Paris). 2003 Nov; 154(7): 468-74.

Cluster headache is characterized by recurrent unilateral attacks of headache of great intensity and brief duration (15-180 minutes), accompanied by local signs and symptoms of autonomic dysfunction including conjunctival injection, lacrimation, nasal congestion, rhinnorrhea, forehead and facial sweating, miosis, ptosis or eyelid edema. Attacks occur in so-called cluster periods lasting for weeks or months. About 10% of patients have chronic symptoms with no period of remission. There are only two abortive treatments with proven efficacy: subcutaneous sumatriptan and nasal oxygen inhalation. Prophylactic treatment is often needed to reduce the daily frequency of attacks: verapamil in episodic cluster headache and lithium in chronic cluster headache.

Title: Verapimil use
Post by pubgirl on Jan 22^nd, 2004, 1:06pm

Floridian

Verapimil for Episodics??

Am I missing something here? I thought current thinking was that Verapimil was the preventive of choice for chronics.

I know that the episodics whose cycles are frequent, long or unmanageable from a pain/abortive point of view are prescribed Verapimil too, but I have been getting a sense that doctors are beginning to steer clear of it for infrequent episodics and also advising all users to take breaks from it too due to the side effects beginning to emerge from lengthy usage as well as anecdotal evidence (from sufferers only) of it worsening their condition over a long period.

Will delete this post if I am way off!

Wendy

Title: Re: Fresh Research - Overview, nothing new
Post by floridian on Jan 22^nd, 2004, 1:11pm

Not sure - my body doesn't like triptans, and I haven't been interested in verapamil, so I don't know as much about these. Anybody?

Title: Re: Fresh Research - Overview, nothing new
Post by CJohnson on Jan 22^nd, 2004, 1:19pm

I was prescribed verapamil (taken in the am) along with topamax (bedtime) by my neurologist to treat my episodic clusters. He was well aware of the fact that I'm episodic and that I do not intend to take meds when my cycle is ended. I got his name off of the OUCH website and was impressed with his cluster knowledge on my first visit with him. In fact, I see him Feb 5th for a follow up.

PFDANs
-Curtis

Title: Re: Fresh Research - Overview, nothing new
Post by pubgirl on Jan 22^nd, 2004, 1:25pm

Just to clarify, was in no way suggesting that Verap ISN'T for episodics, just that it seems strange that the pubmed article defined Verap for episodic and Lithium for chronic as I am certain it isn't as simple as that.

My understanding is that Verapimil is more widely prescribed for chronics than Lithium is, although Lithium or Verap/Lithium combo is also usual.

Also r.e. episodic use, surely, if an episodic's cycle is for example once or twice a year, and only lasts 4-6 weeks, Verap would be semi pointless unless you took it all the time, because it can take weeks to work/get the dosage level right to make it work.

W

Title: Re: Fresh Research - Overview, nothing new
Post by CJohnson on Jan 22^nd, 2004, 1:48pm

Wendy, that makes sense. Why take verapamil when your cycle could be ending on its own just as the verapamil starts to work? Is it usual for verapamil to take weeks or just not uncommon? I also think of verapamil and lithium combo as a cocktail for chronics, but always thought of verapamil as effective for both.
Maybe my neuro meant for me to take the verapamil all year long and I misunderstood him. Maybe someone should start this as a topic upstairs : verapamil - for chronics or episodics. Just to see what the perceptions are.

PFDANs
-Curtis

Title: Re: Fresh Research - Overview, nothing new
Post by ozzman on Jan 22^nd, 2004, 2:53pm

Right down my alley. Ohhhh, Verapamil, the wonders, the never ending cycle....

My first time I took Verapamil was last year at the end of the cycle. I had the feeling that it lenghtened my cycle (4 months), then after 3 months PF I felt the beginning of a new cycle coming along so I started ramping up on the Verap as soon as I had breakthrough CH's. After 6 months on it I decided to quit the Verapamil since it had made my usual 4-6 week cycle a 6 month (so far, actually going on 7 now) cycle.

I only went up to 320 mg and it was the the regular release kind. Never before, in 15 years have I had such a long cycle. I get periods of PF days that last up to two weeks and then things start over again. I am not hit as my "old regular cycles", that is, I'm not hit 4-6 times a day, but rather once or twice a day or every two days. I still get all of the symptoms, droopy eyelid, stuffed up nostril and the pain of course. Imitrex has a 90% success rate and if I use it with O2, the combo is 100% effective.

So Verapamil for episodics, even as a preventative before the cycle starts, seems to me it is not such a good idea.

I have mentioned this to Catlind and it will be one of the topics she will bring up at the New England Center for Headaches next week when she meets with Drs. Bigal, Shefftel, and Rappaport.

Ozzy

Title: Re: Fresh Research - Overview, nothing new
Post by pubgirl on Jan 22^nd, 2004, 5:53pm

I can only speak personally here folks, but I was told by my neuro that he would only recommend Verap if I got into real trouble and couldn't cope any more.
He said that 6 weeks for it to really work was not uncommon and since my cycles don't last as long as that so far, I don't take it.

This next may be controversial and certainly there is no hard evidence for it, but several of the chronic sufferers I know claim Verapimil made their condition worse in the long run, although they had no real choice at the time as their attacks were so bad they had to be stopped.

At our conference, Peter Goadsby himself recommmended that long term users of Verapimil should take a 'holiday' from it and listed a few side effects he was observing and noting to see if they were becoming more common as more people are using Verapimil for longer periods than ever before. They were minor, such as gum problems, but all this added up to me being sure I won't take it until I'm desperate or my abortives aren't working any more

Wendy

Title: Re: Fresh Research - Overview, nothing new
Post by Prense on Jan 22^nd, 2004, 7:00pm

I have had no effects from verapamil...

No negative effects, no positive...I feel like I am taking nothing! 480mg/day chronic. I have no first hand experience for episodics, but I can say that numerous episodic folks here have said that verapamil+pred was a cycle aborting combo. Of course it definately helps to know how much to take from past experience unless you just get lucky...

Chris

Title: Re: Fresh Research - Overview, nothing new
Post by Prense on Jan 22^nd, 2004, 7:02pm

Reading that article again makes me think it is based off of some old info...

Title: Re: Fresh Research - Overview, nothing new
Post by Giovanni on Jan 22^nd, 2004, 7:21pm

Thanks for the information Wendy about verapamil. My last two cycles were incredibly long lasting 5.5 and 4.5 months. I really did not know if it was the large amounts of imitrex injections or the verapamil @240 CR dailey that I take.

I tried to cut down on the verapamil to 120 and my BP went up and am now on 320 Diovan (BP) plus the 240 verapamil. I alway thought that verapamil was a double edged sword.

John

Title: Re: Fresh Research - Overview, nothing new
Post by eyes_afire on Jan 22^nd, 2004, 7:29pm

For me, verapamil starts working in a week. Since I started taking verapamil I no longer know whether I'm episodic or chronic. My cycles used to be 5 or 6 months. The only thing I know is that now I can't stop taking it. Didn't really matter anyway because I don't have enough finances to treat these damn things using strictly abortives. Costs too damn much. >:(

--- Steve

Title: Re: Fresh Research - Overview, nothing new
Post by Stevieray on Jan 22^nd, 2004, 9:03pm

I am on Verapamil and Lithium with Imitrex nasal for the pain. My Chs started early December and now I am 8 days PF. 10 years ago I was on LI and Prednisone and the CHs last 3 months. Who knows waht it will be the next time but so far the Verap seem to be the ticket. I also had high BP so the Verap helped that too. I will probably be on the meds for another month to see if the beast is realy dead.

Title: Re: Fresh Research - Overview, nothing new
Post by pubgirl on Jan 23^rd, 2004, 12:30pm

Sorry, just another quick point.
I've seen from this board that some people are taking the slow release Verap. This may be why it isn't working for them.
From reading/his lecture only as I don't use it but Goadsby says the slow release is almost pointless and always prescribes the quick release for his patients.

W