Been some time. Here's an update.

[charles87sf]

Hey everyone!

Hope you all are doing well and cluster free as much as possible! I wanted to post this forum as an update on my status, which is unusual:

 

• Went into a cycle back in Feb/March, which is my usual timeframe to enter a cycle. 
• It hopped sides! Pain has always been on my right side, but this most recent cycle it hopped to the left and boy was it strange! 
• Visited a new doctor near the end of March and he prescribed amitriptyline(25mg) on top of what my neurologist had prescribed some years back(verapamil, cyproheptadine... which never did jack squat....). 
• Here's where things get a bit wonky... The combination is still working. I take those three meds daily and it seems to keep the clusters at bay. After going a week or so on the daily meds, I stop taking them and I can go some time before I feel like I get punched in the eye socket. The moment I begin to feel the clusters returning(severe pressure), I start taking the 3 meds again. 

Overall, things are going well. I'm worried for the day when this combination stops working as I know that happens regularly. I have a doctors appt tomorrow and I'll be updating him with what I've just mentioned. 

Has anyone else had luck with either or all of these meds listed above? I know Verapamil has been mentioned before in the forum as some point or another(I think it was mentioned that it was trialed many years ago with no real results) 

Charles 

[CHfather]

Thanks for this update, charles'.  So glad that combo is working for you!  Do you also have oxygen? Have you considered the D3 regimen?

1 hour ago, charles87sf said:

Has anyone else had luck with either or all of these meds listed above? I know Verapamil has been mentioned before in the forum as some point or another(I think it was mentioned that it was trialed many years ago with no real results) 

It would take a very long time to answer this question about those three meds individually, let alone in combination (I don't recall anyone who has taken that specific combo and only those three, but it could have happened, I suppose).  Leaving side effects aside for the sake of discussion (but they can be significant), each of them has had successes and disappointments for people reporting here.  If you want to see more, you could use the search bar at the top right of each page. There are not a whole lot of entries about cyproheptadine (Periactin) and not a huge number about amitriptyline (Elavil), but Verapamil is a whole other topic.  Lots of people have tried it, some with very good results (often at doses that are considerably higher than what is typically prescribed).  The Periactin is an antihistamine, and in the last few years, thanks mostly to Batch, it has been recognized that allergic reactions (even without symptoms) can fire up CH.  Like I say, really too complex to try to discuss all this here.

1 hour ago, charles87sf said:

After going a week or so on the daily meds, I stop taking them and I can go some time before I feel like I get punched in the eye socket. The moment I begin to feel the clusters returning(severe pressure), I start taking the 3 meds again.

Have you talked to your doctor about this stop/start approach to taking the meds?  I feel pretty confident that that is not really a good idea, at least with the Verapamil and probably also with the Elavil.

[jon019]

10 hours ago, charles87sf said:

Visited a new doctor near the end of March and he prescribed amitriptyline(25mg) on top of what my neurologist had prescribed some years back(verapamil, cyproheptadine... which never did jack squat....). 

...CHfather has already discussed this elegantly. just to add my few cents. this is an odd combo i've never heard of and looks like a kitchen sink approach of old options.  i have used all 3 (20+ total) and verapamil actually worked (at proper dosages depending on cycle) reasonably well (70% reduction in hits and lowered intensity).cypro and amitip were worthless for me (and that was maybe 18-20+ yrs ago (IOW he's reading old lit).....and little, if any reported, success with CH. guessing its the verap that's working. always my concern with multiple prevents, of these or others, ....that if this works....which one?

...there are newer meds i'm surprised have not been tried and i really second the urging of OXYGEN, energy drinks, and D3. faster, cheaper, safer alternative to traditional meds.

...then there are always the alternate methods discussed here... have the BEST track record....and make the above moot...

 

 

 

 

 

 

 

 

 

 

 

 

 

[SHG]

Verapamil is a first-line CH preventative that's effective for over 70% of patients, usually at 360mg/day. Amitriptyline is known to have a modest benefit for CH, so it makes sense this combination works a little better then Verap alone.  

Cyproheptadine is a first-generation anti-histamine. These medication proved useless in the past, when CH was called "Histamine Headache". Histamine has a role in neuroinflammation and is secreted in high volumes during CH attacks, but it's only one of several inflammatory agents involved in CH. Nevertheless, first-generation anti-histamines does seem to help when combined with Batch's D3 Anti-inflammatory regimen. So it's possible they are also useful as augmentation to Verapamil.

BTW, Amitriptyline has a chemical structure that is very similar to some anti-histamines.  

Edited September 19, 2022 by SHG