Hi guys,
How time flies. Since November up to current I have been ticking along and using 7 verapamil per week (1 per day) plus 5 cafergot per week as preventatives. I am still unhappy with side effects even though CH is under control. I am now stopping the verapamil and winding it down by taking 1 every 2 days till the end of this week. It seems to me the verapamil and cafergot when both used as preventive medication work against each other. One is a dilator and the other a constrictor. I am taking a chance here and if it does not work then I will continue current regime. I cannot get any advice from doctors as they have no clue. I am forced to go by my gut instinct and common sense. I am hoping that stopping verapamil will have a domino effect and allow a reduction of cafergot down to say 3 tablets per week or less. These are scary times for me but hope springs eternal. I will now need to watch my blood pressure. Oh ...and I am evidently booked to see a specialist on the public system but it could take months.

Graemel wrote on Mar 3^rd, 2019 at 4:51am:

...I cannot get any advice from doctors as they have no clue. I am forced to go by my gut instinct and common sense.

The bestest decision you've made during your CH career.

Verapamil are prescribed as a CH preventative, whereas Cafergot are normally taken as an abortive on the onset of an attack?


Cheers Hoppy

Graemel wrote on Mar 3^rd, 2019 at 4:51am:

Since November up to current I have been ticking along and using 7 verapamil per week (1 per day) plus 5 cafergot per week as preventatives. I am still unhappy with side effects even though CH is under control. I am now stopping the verapamil and winding it down by taking 1 every 2 days till the end of this week. It seems to me the verapamil and cafergot when both used as preventive medication work against each other. One is a dilator and the other a constrictor. I am taking a chance here and if it does not work then I will continue current regime. I cannot get any advice from doctors as they have no clue. I am forced to go by my gut instinct and common sense. I am hoping that stopping verapamil will have a domino effect and allow a reduction of cafergot down to say 3 tablets per week or less. These are scary times for me but hope springs eternal. I will now need to watch my blood pressure. Oh ...and I am evidently booked to see a specialist on the public system but it could take months.

With verapamil, you say you are on one per day, but what is the dose per tablet? The typical dose for someone to get an effective CH preventive response for CH is between 360mg and 480mg a day, however some will see a notable reduction at a lower dose whilst others may go to around 1000mg a day.

I wrote a very detailed post about verapamil - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - well worth a read.

Are you having side effects from the verapamil, the cafergot or both?

As Hoppy mentioned, cafergot is a CH abortive, not a CH preventive (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE).


Quote:

Nausea is a frequently encountered side effect, which sometimes requires an anti-nauseant medication to be taken simultaneously. Cafergot or any ergotamine preparation should not be used on a daily or near daily basis because of possible rebounding effects. Also, it should not be taken in those patients suffering with heart disease, uncontrolled glaucoma or hypertension, liver or kidney disease, or circulation problems. Ergotamine should not be taken within 24 hours of a triptan medication or other ergot-containing medication.

Note that taking it daily is associated with rebound headaches. From talking to my my headache specialist, you should aim to take abortives no more than 12(ish) days a month.

Now I know that it isn't easy getting out of being hit by CH often when you've been over using an abortive, but it can make a big difference to headache frequency once you get out of the cycle of rebound headaches. I've been through this and many others here will have too.

If waiting to see a neuro on the public system is going to take too long, many will also see patients privately. I can recommend some good ones in Auckland. It might be worth a day trip up to Auckland, especially now that Air NZ is doing some much cheaper flights (either $39 or $49 each way).

Any questions, shout out.

Also regarding the cafergot,  Graemel,  be sure to stay within the guidelines laid down for the dose you're taking.

I got some small relief from it as an abortive but then an idiot neuro tried it on me as a preventive at almost three times the limit and I can't recommend the result.  Any tingling or numbness in the fingertips or toes is the first sign,  then things go horribly wrong.

Keep fighting the good fight,  and we're behind you all the way!

Brian over the ditch.

Hi guys and thanks for the support. I have been taking 1 tablet of verapamil 120gm per day. Am now trying to cut it to zero. My gut tells me verapamil and cafergot cannot both be used as preventive at same time due to working in opposite ways. I am feeling my way here and will let you know after a couple of weeks. My main concern is blood pressure increase. I am down to 5 cafergot per week. the maximum dose is 10 per week so I am comfortable with this. I hope to reduce if further. Currently I am controlling CH but still not happy with side effects of medication such as tiredness, temperature and a few others. This is why I continue to reduce medication as much as I can. In this case I think the use of verapamil and cafergot has made things worse. Side effects are from both tablets. Using cafergot as a preventive is a conscious decision I made myself. I am well aware it is not recommended but it seems to be working for me. I think in the scheme of things my medication usage is quite low.

I have to say at 1 stage I was on 4 verapamil per day ..500gm. I could barely function. You have to watch this stuff.

Graemel wrote on Mar 4^th, 2019 at 6:07am:

I have to say at 1 stage I was on 4 verapamil per day ..500gm. I could barely function. You have to watch this stuff.

As with just about any medication, there is always a balance between the beneficial effects and the side effects.

Although it isn't just medication, lots of things like chocolate, ice cream, beer, etc. are wonderful, but too much any of them has some not quite so welcome side effects.

Yes Mike I am reminded of Corinthians 'all things in moderation. Sadly I am virtually teetotal these days and have been for some years. I am tapering off the verapamil and so far cautiously optimistic. Small episodes but much less intense. I am beginning to wonder if the medications mixed together have in fact prolonged my CH?

Graemel wrote on Mar 5^th, 2019 at 4:42am:

I am beginning to wonder if the medications mixed together have in fact prolonged my CH?

It is possible. Talk to your pharmacist and ask if there are any known interactions between the two.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This lists a lot of interactions for cafergot and I'd look over to see if anything looks applicable to you.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

That is the verpamil one, again well worth a look.

When most drugs are tested, they are normally used on healthy people who are not taking other medications, i.e. they do not normally test two or more drugs together, never mind at different doses, etc., otherwise the number of combinations would become impractical to test.

As to the "all things in moderation" quote, one neuro I've seen a few times likes to append "including moderation" to the quote, i.e. you don't have to live perfectly, but as long as it isn't too often you deviate then it doesn't normally have too much impact.

The thing is my pharmacist originally stated cafergot was a dilator! I had to correct him. There is not much help for me in this neck of the woods and I cannot afford travel and private quacks. I need to rely on my gut instinct and commonsense.

I am into day 5 with no verapamil and things seem to be improving. It is early days yet.

Every step forward helps.

And it seems that not all pharmacists are created equal. But they do have access to better databases of medical interactions than most people do.

Hi guys
So I stayed off verapamil for around 5 weeks but in the end had to go back on it. Over the period I started increasing my cafergot use and when I got to 10 per week or just over I called it quits. I am now on 1 verapamil 120gm per day and 1 cafergot. split in half and taken morning and evening. So far CH is under control but still get whacked on occasion.
I am interested in how people here talk about cycles. For the last 2 years I have been on a continual cycle it seems and there is no end in sight. I am only keeping CH at bay with medications.

Greamel,

Approximately 20% of Cluster Headache sufferers change from Episodic to Chronic.

The medical definition of CCH is:

3.1.2 Chronic cluster headache

Description:

Cluster headache attacks occurring for one year or longer without remission, or with remission periods lasting less than 3 months.

I have been chronic for many years and manage with about 80% success with Batch’s D3 Regimen. It is the only treatment I have ever had that has worked.

I recommend you try it. There is a lot of info in these pages and plenty of people that will support you and answer any questions you may have.

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Peter.

Hey guys and thanks for your inputs. I am just about ready for D3 however I am now on day 5 taking only half a cafergot tablet per day. 120mg. Together with 1 verapamil in morning plus half cafergot at night I am CH free for the moment. Time will tell. so it is equivalent to 3.5 cafergot tabs per week. This is a big reduction for me and I am feeling better albeit getting crucified with a mouth ulcer (unrelated) caused by a recent extraction. There is  some small exposed bone ripping my tongue to shreds it seems. I will try and get dentist to smooth rough edges of bone. I missed the dawn parade as a result so am quite pissed off. Dentist should have smoothed it off when I saw him last week for antibiotics. I feel it has since been a week of needless pain. My wife is devastated that I cannot yell and shout or hoot currently. However she perked up when I suggested she do all the talking for both of us.

Hey Graemel,

I wouldn't wait on the vitamin D3... I'd start it now.  It will also help the tooth extraction heal faster.

You can pull down a copy of the treatment protocol at the following link.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care and please keep us posted.

V/R, Batch

Thanks guys for the support. Jaw is much better now. So I have had around a week taking 120gm verapamil tab in morning and half a cafergot at night. That means 7 verapamil per week and 3.5 cafergot. If it continues I can certainly live with this. I will think about the vitamins. Maybe take some D3 and magnesium. The full batch seems complex!

Good to see things are improving Graemel. With CH, every step forward is well worth it.

The D3 stuff is actually pretty straight foward.

For my magnesium, multi-vitamin and fish oil I use START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE which works well.

For my D3 and K, iherb.com is a good place.

I just take them with my evening meal and it is just works wonders, not just for CH but migraine and I've even seen a huge drop off in how many bugs I get.

Just in the last couple of days I have noticed  a transfer. Warning signs and CH normally occur over my left eye/ temple. It has transferred to my right temple. I do recall this happening very rarely in the past. Can anyone shed light on this?

Graemel wrote on May 2^nd, 2019 at 6:10am:

Can anyone shed light on this?

The collective wisdom I've seen over the years is that CH side changing can happen between CH cycles or even within a cycle, but nobody has been able to attribute any meaning / reasons / causes / implications for it happening. I've not seen anything in CH research that disagrees with this.

So just continue what you're doing.

Thanks for that Mike.