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(Message started by: burnt-toast on Jun 13th, 2005, 10:41am)

Title: Anbesol as Abortive
Post by burnt-toast on Jun 13th, 2005, 10:41am
Too early to tell.... but encouraging.

Not sure where I read about using it - I believe is was here.  Out of desperation I used Anbesol last night.  It was the first time in 10 years I have aborted a CH.

1st attack (awake) - Dipped Q-Tip in Anbesol and completely coated the inside of my nostril (on the side of the Cluster).  Did not go high enough to start sneezing before the unbearable pain aborted (seconds) and the CH fully aborted in less than 1 min.  I was amazed.

2nd attack (asleep) - Woke with CH somewhat more  progressed and followed the same process.  Results were a little slower but the CH fully aborted in less than 2min.  

Attacks #3, #4 and maybe #5 - that always follow, did not occur.  I actually slept good last night.    
 
I have tried O2, Imitrex, Zomig and recently Cafergot (as a preventive/not abortive).  O2, Imitrex & Zomig were ineffective.  Cafergot made things worse.  

In 10yrs - cycles have been primarily chronic with very few short breaks of 1 to 3 months (total 9 mos. PF over 10 yrs).  Current cycle has been on full for just shy of 3 years.  It's been hell on earth and I have not responded to much of anything.  It felt great to get what may only be a small win.  

If someone here initially posted this on Anbesol, please provide updates on how things are going with it's use.  I'll keep trying it and posting results.  

I hope this helps others and if someone uses it please post updates good or bad.

P.S. By the way there was absolutely no discomfort using Anbesol.


Tom      

 

Title: Re: Anbesol as Abortive
Post by Jimmy_B on Jun 13th, 2005, 11:31am
Here's to hoping it works. I own a lot of Wyeth stock 8).

I checked the precautions and I didn't really see anything that could harm you from doing this...although it does say "Should not be used for more then 7 days without recommendation from your Dentist or Doctor."

The active ingredient is Benzocaine (either 10percent or 20percent...depending on Regualr or Maximum strength).

Jimmy

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 13th, 2005, 11:57am
Clarifications - only Cafergot was used as a preventive.  O2, Imitrex and Zomig were prescribed as abortives.

Jimmy_B

I recently came across a post or article about using it but can't locate it again.  One night clearly doesn't make a it a success but one night of good sleep is gold to me.

I'll have to look into the 7-day thing just to be sure.

Tom  

Title: Re: Anbesol as Abortive
Post by Jimmy_B on Jun 13th, 2005, 1:06pm
Tom,

I think the 7 day thing is basically put there for a lot of O.T.C. meds. They don't want to be held liable for any problems that occur with long time use. I see that warning on a lot of OTC pain meds and such.

I'm glad you're able to get some time off from these damn headaches. Keep us posted on how it's working.

Jimmy

Title: Re: Anbesol as Abortive
Post by vig on Jun 13th, 2005, 1:52pm
Benzocaine?
Lidocaine and Cocaine are also said to be effective as last resort agents.

Title: Re: Anbesol as Abortive
Post by Redd715 on Jun 13th, 2005, 2:05pm

on 06/13/05 at 13:52:21, vig wrote:
Benzocaine?
Lidocaine and Cocaine are also said to be effective as last resort agents.



Last resort?  Lidocaine is the only abortive I use right now.  No interactions with other medications that one might be taking.  Isn't 100% effective, heck nothing is.  If it drops the level of a hit down a knotch or two thats good enough for me untill other treatment can be had.

Title: Re: Anbesol as Abortive
Post by vig on Jun 13th, 2005, 2:31pm
Robbins' book lists coke as a last resort medication.

didn't see lidocaine there, sorry

Title: Re: Anbesol as Abortive
Post by Margi on Jun 13th, 2005, 2:38pm

on 06/13/05 at 14:31:51, vig wrote:
didn't see lidocaine there, sorry


Hi Paul :)  

Didn't Dr. Kudrow use lidocaine as his first line of defense way back when?

I think lidocaine is the drug used in that sphenopalatine block, isn't it?

Title: Re: Anbesol as Abortive
Post by Linda_Howell on Jun 13th, 2005, 4:50pm

Quote:
Didn't Dr. Kudrow use lidocaine as his first line of defense way back when?


Yeah.  He did.

Long time ago.

 Linda

..

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 14th, 2005, 10:19am
Day two of Anbesol experiment

Truely strange and not sure what to make of it.

Attack #1 (awake) starts 9:52 - Applied Anbesol - relief of pain by 9:54 - CH reappears @ 9:56.

Second application stops pain by 10:00 - CH reappears at 10:05.  

Third application stops pain by 10:07- CH reappears a fouth time at 10:09

Application of Anbesol completely useless and attack turned into a monster CH lasting until almost 12:20.

Strang parts -

No tearing or sinus drainage occurred during severe CH.  Normally I wear out several paper towels during severe attacks.  

Wife reports I was asleep by 12:30 and for the second day I managed to sleep through the night without my normal compliment of repetitive attacks - that usually run through about 4:00am.  

Is it possible to have compressed 4 seperate attacks into a 2.5hr. window?  I'm not sure but the experiment continues.

Tom  

 

Title: Re: Anbesol as Abortive
Post by Margi on Jun 14th, 2005, 10:58am

on 06/14/05 at 10:19:52, burnt-toast wrote:
Is it possible to have compressed 4 seperate attacks into a 2.5hr. window?  I'm not sure but the experiment continues.

Tom  

 


Tom, I would think that it's more that you confused the Beast when it first hit you....it withdrew a little with each application of Anbesol, but then it got REALLY pissed off at you for denting its armour and gave you one mother of an attack as a thank you.  :(  

In our 20-some years of battling, I've seen different things do this for my husband too.  Something would help him, almost miraculously, then slowly his body would build an immunity to the new trick and he'd end up getting hit with a vengence as a result.  I've actually seen this happen for Mike with oxygen, at peak of cycle only though.  Oxygen will abort initially, then the attack will resurface within half an hour.  I don't think it's separate attacks, I think it's just that you're not completely killing the first one.

It could be that the beast honestly is getting wise to the lidocaine and, although you have found some initial relief, it's not going to last.  I'm real sorry, but that's been our experience with Orajel (similar product), too.  It did work for awhile for Mike, too. :(



Title: Re: Anbesol as Abortive
Post by hdido on Jun 14th, 2005, 12:56pm
Tried cocaine drops (prescription, 3% solution) a number of years ago-didn't work, didn't get high, didn't even get a numb nose.  Good thing that health insurance paid for it:  $400 for 1oz!

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 14th, 2005, 1:40pm
Margi -

Appreciate the input and agree/learned a while back that in most cases nothing seems to stay ahead of these things very long.  However, two nights of back to back sleep is something I haven't experienced in over 1 year.  

What interests me most is the lack of follow up attacks that I am used to experiencing.  

Figure if it stops working alltogether at least I managed a few small wins this time.

Tom



 

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 14th, 2005, 1:43pm
hdido -

Sorry to hear about your experience.  At least I get a little numbness in my nose.  

I hope that something else is working somewhat better.

Tom

Title: Re: Anbesol as Abortive
Post by Margi on Jun 14th, 2005, 4:41pm
Tom, that's really cool that you're seeing a change in pattern!  I love to hear of a clusterhead finding relief.

Have you looked into melatonin?  It really does help a lot of folks get some sleep and keep the beast at bay.  So does Dramamine and/or benadryl, but the melatonin seems to have a higher success rate.

Keep posting your results with the Anbesol.  Very interesting! :)

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 14th, 2005, 8:13pm
Margi -

Yes 9mg melatonin nightly.  Unfortuantely when these things want me up and moving its not a request.  Picking burnt-toast wasn't by accident, I really feel that way.  This little break is most welcome.

Thanks again

Tom  
         
   

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 15th, 2005, 8:24am
Day three results -

Best results yet.  

9:45 (awake) attach #1 - applied Anbesol, pain aborted by 9:48.  Absolutely no addtional attacks last night.  Slept very well for third night straight.  

Not sure if this is all in my head at this point but if it is I'll take it.  Just for reference my current other meds.  It's been a long time since I've seen any results.

    720mg Verapamil (240 x 3)
  1200mg Lithium (300 x 4)
        9mg melatonin (before bed)


Tom
     
       







Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 16th, 2005, 10:33am
Day 4

9:35 (awake) CH#1, applied Anbesol - Pain Free 9:38

11:15 (awake) CH#2, applied Anbesol - Pain Free 11:20

1:20 (wakened from sleep), CH#3, applied Anbesol - Pain Free 1:27.

No additional CH attacks.  I'm starting to be impressed by what appear to be good abortive capabilities.  

Tom

Title: Re: Anbesol as Abortive
Post by vig on Jun 16th, 2005, 10:47am

on 06/16/05 at 10:33:22, burnt-toast wrote:
Day 4

9:35 (awake) CH#1, applied Anbesol - Pain Free 9:38

11:15 (awake) CH#2, applied Anbesol - Pain Free 11:20

1:20 (wakened from sleep), CH#3, applied Anbesol - Pain Free 1:27.

No additional CH attacks.  I'm starting to be impressed by what appear to be good abortive capabilities.  

Tom

just curious...
How do you know it's not the Verapamil/Lithium/Melatonin?

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 16th, 2005, 11:47am
vig -

The Verapamil, Lithium and Melatonin have been my primary meds. for nearly 8  of 10 years I have had CHs.  They don't stop my symptoms - but just a delay in my med. schedule (an hour or more) results in disasterous CHs.  So in general I know they help.
         
My current cycle has been active for just shy of 3 years.  This cycle has been unresponsive to abortives - O2, Imitrex, Zomig and Cafergot (prescribed as a preventative).  At best I would get a 1 day break every week and then return to 2 - 4, or 5 attacks each night.
Most of these lasting between 20 & 60min. with longer episodes not uncommon.  

The day I began using the Anbesol that stopped and I have had 4 consecutive very good nights.  I still have to believe it's too early to tell how well it will hold up.  

Could it be a combination of my meds. and Anbesol - I believe that's possible.

Could it be that the weather change is also affecting the cycle, I also believe that's possible.  The few breaks I have had over 10 years were between Jul. and Sep.  

I do know that when I apply Anbesol during an attack, relief occurs in most cases within a few minutes and the number of attacks has decreased.



Tom  

 



Title: Re: Anbesol as Abortive
Post by Margi on Jun 16th, 2005, 11:49am

on 06/16/05 at 10:47:50, vig wrote:
just curious...
How do you know it's not the Verapamil/Lithium/Melatonin?


Vig, verap/lith and maybe the melatonin are preventatives though.  By the timing of what Tom's posting here it really does look like the anbesol is being a pretty good abortive for him.  I'm thinking that the preventatives probably are doing their job in minimizing the attacks and then the anbesol is killing the break-thrus.

Kinda cool, I think.  Tom, thanks for posting your progress - it's stuff like this that helps all of us!


Title: Re: Anbesol as Abortive
Post by seasonalboomer on Jun 16th, 2005, 11:56am
damn Tom, you gotta be lovin that sleep based on what you describe as your usual schedule. sleep on dude! that morning air must smell a little better.... keep it going.


amended after re-reading my post:

I suupose the morning air has the faint aroma of anbesol... ;)

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 16th, 2005, 12:13pm
Quite honestly, this recent round has had me to the point of total exhaustion.  Lost 20lbs.  Nothing physically wrong, doc. feels its because I am always on.

My neurologist want's me to consider the deep brain implant.  That's why I signed up here and started looking for assistance and information.

Saw the Anbesol post and figured what the hell can't hurt to try it while looking into alt, med. or surgical possibilities.

Last 4 days have been an absolute dream.  I had truely forgotten what feeling rested was like.  At this point if Anbesol smelled like diesel, who cares.


Tom

Title: Re: Anbesol as Abortive
Post by vig on Jun 16th, 2005, 1:18pm

on 06/16/05 at 11:49:28, Margi wrote:
Kinda cool, I think.  

I think it's kinda cool too!

Title: Re: Anbesol as Abortive
Post by gMike on Jun 16th, 2005, 3:48pm
Excellent that you're getting some relief from a product that doesn't have serious side effects.

I hope it keeps working for you!!!!


Mike

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 17th, 2005, 9:14am
Margi, vig, seasonalbloomer, gMike - Appreciate the feedback.

Day 5 update -

Attack started a 8:15 - applied Anbesol and Pain free at 8:38 - I'm marking this as a normal CH and Anbesol was little if any help.  

No additional attacks - 5 good nights of sleep and I think my wife and children are beginning to recognize me agin.      

I believe the Anbesol is aborting most of them but can't see how aborting them is reducing frequency.  I have to believe it's a coincidence and that that I'm about to get a break.  God I hope so because this one has been one long ride and I can hold off on making a decison on surgery.

Tom    

     

Title: Re: Anbesol as Abortive
Post by seasonalboomer on Jun 17th, 2005, 9:27am
Good on you! It sounds like you may be reaching the stage where you might not be ready to set a date to have celebration beers quite yet, but absolutely time to start dreaming about them again. Start visualizing what remission is going to feel like and all you want to do.

Best regards,

Scott

Title: Re: Anbesol as Abortive
Post by Margi on Jun 17th, 2005, 9:36am
Awesome, Tom! :)

Sleep is absolutely golden to a cluster family, isn't it?  Makes you so much better able to fight and deal through the day.

I have a rather personal question for you...um, and kinda icky too.  You say you're applying the anbesol to a q-tip and then putting it inside your nostril.  How far up?  Sorry, gross I know, but I'm just wondering if you're actually triggering a sneeze reflex by doing this?  Mike will sometimes go and make himself sneeze this way (sans anbesol) to try to relief some pressure while under attack.  

And, your stating that you believe the anbesol is aborting but not reducing frequency - that's pretty common I think.  Abortives quite often have the opposite effect and spawn more attacks (at least Imitrex does that for Mike).  

Glad to hear you had another good night, Tom, and hopefully the beast is about to lose your address!!

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 17th, 2005, 10:46am
seasonalbloomer -  Yes, enjoying a beer may not seem like much to most but during this cycle I've gotten stupid
and paid very, very dearly for weak moments.  Enjoying a beer without fear would be great.

Margi -  Not an icky question and I hope to explain this well.  

I've been thoroughly saturating the Q-tip and starting at the nostril opening - coating the entire lining with Anbesol (like stirring a cup of tea and hitting the entire inside surface with the spoon).  I continue to slowly coat deeper into the nostril until I hit the bony features in the nose - then press lightly on all these structures to apply a little more Anbesol.  I have never gone far enough into the nose to trigger sneezing.  I would have to say the I stop just before the Q-tip reaches that part of the nostril.  If I missed someting please ask for details.

When the CHs have aborted it's been fast, even on night #2 where they seemed to come back as fast as I stopped them but just cuttng the durations short was pure pleasure.  The times they didn't abort - It simply didn't work????

I hope this nightmare looses my address for a while, this cycle has been way too long and this past year has been one of the worst on record.  My breaks are typically few and short but I gladly take any I can get, even when I know it will be back soon.


Tom        



 
     


 

Title: Re: Anbesol as Abortive
Post by Margi on Jun 17th, 2005, 4:55pm
Thanks, Tom - I told Mike about this at lunch today and he might try this, this weekend.  We've got some Orajel at home, I would think it would produce similar results.

Hope you get continued good results! :)

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 17th, 2005, 11:11pm
Margi -

I wish you and Mike the best.  Let me know how it works.  I really hope the results are as good as I've had.

Tom    

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 18th, 2005, 5:00am
OK where'd this come from?

Day 6- Thought I had nothing to add for today.

Like I had posted it's not unusual to get a clean day thrown in now and then.

Unfortuantely I got up at 4:50 with a CH.  That is unusual - but the Anbesol had the thing stopped by 5:00.

Updated to Read:

Things are really gettin out  of wack - getting mid day attacks while cleaning my woodshop.  Totally out of character for me.  Hope this isn't some kind of switcheroo.

1:15p - bad shadows thought were going to blossom into full blown attack - kept working disappeared on their own by 1:39p.

2:00p - full blown attack forced me to go into the house - Anbesol applied but no help - lasted until 2:27p

3:45p still in house - another attack - Applied Anbesol and aborted by 3:50p.  

Day 7 - no headaches during the night.




Tom




Title: Re: Anbesol as Abortive
Post by yikes-another-one on Jun 20th, 2005, 7:48pm
:o

Sometimes the daytime attacks
are easier to deal with or abort.

Like the family says, "Never relax"

Try to see if physicla activity
can "postpone" the atatck.

Soemtimes stress is a good thing.

I work at a daycare,
and while the kids are running me ragged, I
may get a few twinges of pain, but usually
can fight them off by getting down on the carpet and
playing with the kids.  (Balls, imitating tigers,
something fun and active)

but once they lay down for naptime....watch out.
I get a doosey aobut 12 or 1pm....ugh.

and it fades by the time they get up  (1:30 or 2pm)

and then I am usualyl free unitl work ends at 5pm.
then I get another baddie.

So "Never relax"  has a special meaning to me.
it really can postpone the pain....
not that there is ever a "get out of jail free card"
or a "better" time to suffer....

just happens that I won't get fired from this job.
Yipee!!!

Good luck!

Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 20th, 2005, 8:58pm
Day 8

Got wake up call 12:20A - applied Anbesol - no help CH lasted until 1:32A.  Still no watery eye or runny nose that is typical of a strong attack.

Daytime shadows were almost constant - Has anyone had problems with air conditioning?

Margi - Did Mike try the Oragel over the weekend


yikes-another-one -
These hit me when I was going full bore.  Typically I tell folks work is my one salvation - as long as I don't stop working - I won't get hit.  Chalk up another one for the "mostly predictable but not always" category.  But until recently, I was pretty run down by this long cycle and may be adjusting to the additional sleep I'm starting to get.       Just a guess.


Tom      



Title: Re: Anbesol as Abortive
Post by burnt-toast on Jun 21st, 2005, 8:19pm
Day 9 -

Wake up call came at 12:45A Anbesol aborted by 12:49A

Second attack at 12:10A Anbesol no help CH lasted until 1:17A  Corrected to read 1:10 """" lasted until 1:17

No additional attacks but still getting bad shadows throughout the day.  

I don't believe I'm going to get a break in the CHs that I was hoping for but at this point I've aborted enough attacks to contine using Anbesol.  From what I have so far it's best to use the Anbesol early in the attack for the best results.  

Hope this little experiment helps someone else, let me know if you try it.

Tom



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