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Hi, this is my first post so take it easy on me :-)

I have suffered with CH for about 20 yrs, but was only correctly diagnosed about 6 yrs ago.

I had an addiction to Advil Cold and Sinus pills as a preventative measure for about 10 yrs, 3 extra strength with breakfast and 3 before bed.

Looking back, I don't think they worked very well. I had an Ear/Nose/Throat specialist perform Sinus surgery to try to alleviate the pain, to

no avail. My GP, after diagnosing me, prescribed me Zomig nasal sprays and as a preventative measure, Verapimil Slow release, 120mg/day.

2 yrs ago, the Beast visited every day for a month, and I was taking Zomig every day. I asked my GP if I could take more than one, he said that was fine.

After visiting a Pain Clinic, I was told that much Zomig was contributing to rebound headaches and was immediately taken off Zomig. 

The replacement drug is called Cambia (diclofenac potassium). You mix the powder with a few tablespoons of water and drink it.

It only works at the first sign of a CH and is useless when the headache is in full swing, so not usefull when the beast wakes me up in the middle of the night.

Last year I was prescribed Oxygen but had limited success. This time around I was prescribed a higher flow rate with a non-rebreather mask,

hoping that makes a difference.  

One of the remedies my ENT specialist once offered up was to spray lidocaine in my affected nostril, to freeze the nerves, I had some success numbing that area but

then he was reluctant to prescribe it for some reason. The title of this message is Sucking Ice Cubes. The reason is I have discovered that as part of reducing the pain felt, sucking ice

cubes mimicked the lidocaine effect.  I found that by sucking ice cubes and pressing them into the roof of my mouth, it would, over a period of 20-30 minutes, "freeze" a nerve in my sinus cavity that would reduce the pain and help chase away the beast. It often works in conjunction with icy cold compresses to the left side of my face.  Sometimes I even find sucking ice cubes can stop a shadow from building into a full blown CH. I bring a Yeti 30oz mug full of ice every day to work in case I need it, it keeps the ice all day in my lunch bag all day.

I don't know if anyone has tried this before, there's just soo much information here.

 

 

 

 

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Welcome, its'.  As we say, sorry you have to be here.

First things first.

6 hours ago, itsfatboy said:

Last year I was prescribed Oxygen but had limited success. This time around I was prescribed a higher flow rate with a non-rebreather mask,

hoping that makes a difference.  

It will make a difference.  Sounds like you had a useless system the last time.  What is the current flow rate?  It's rare for a doctor to prescribe more than 15 lpm, but most people find that flows higher than 15 lpm make for better aborts.  Throw down some coffee or an energy shot as you start of the O2, use a good breathing technique, and your life is gonna start changing.  Consider getting the mask that's made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

One way in which O2 is going to change things for you is that you won't need a triptan like Zomig nearly as often, because the O2 will stop the attack.  Only an idiot would prescribe Cambia for CH and think it was sufficient.  Only an idiot would take you off Zomig instead of cautioning you to use it less often.  (Zomig is not a preventive. It doesn't prevent attacks. It stops (aborts) attacks that have begun.)  Verapamil is a preventive, but 120 mg/day is useless.  (Could be that they intended to increase it over time, but 120 mg/day is still a low starting place.)

The ice cube to the roof of the mouth (or sucking ice water through a straw to the roof of the mouth) is something that has been recommended here.  Glad it helps you.  Drinking down an energy shot usually works better and easier, and O2 and a sensible abortive are also going to stop the pain, so very few people have to resort to the ice cube method.

We're not giant fans of triptans or verapamil here, but they can have their place.  The three things I would suggest you do are (1) Get your O2 going ASAP; (2) Start the Vitamin D3 regimen ASAP; (3) Read this file, which has info about (1) and (2) and maybe some other stuff that might be useful to you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

And (4) Keep asking questions, and (5) Consider busting, at least as something to have in your back pocket for the future. (Busting discussed at the end of the file I just linked you to.)

 

 

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So. I wrote that blurb at the office and I appear to have skipped over some things.

My original scrip for O2 was 8-12L /min, as was prescribed by my neurologist.

My GP has changed the scrip this time to 15L/min with a non-re-breather mask, which I believe is what you're suggesting i should use.

My Verapamil was increased last year to 240mg slow release. 

I was taking so much Zomig, that my benefit plan started capping it. Here in Ontario, Canada,  the cost is $28 each spray.

When I got below 3 boes (of 2). I would literally start to panic that I wouldn't be able to find more.

When I first started Cambia, it was very effective. Just like Zomig was at first, but I was told Zomig was to be used at the beginning, not DURING a CH.

Maybe my GP didn't have a lot of experience in prescribing for Cluster Headaches, but I really don't think a lot of GP's have that experience.

As for the energy drinks, is there a specific brand or certain product within a brand line? Or just plan old redbull ?

I am a little concerned that an energy drink in the middle of the night, I may not get back to sleep?

Mind you, the quality of sleep after a CH is pretty sh*tty.

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Hi ifb, glad to see you got the super expert advice from CHf!

sucking ice cubes (especially when placed on the CH side of the roof of the mouth) has worked for me as a helper for aborting attacks when I'm not in in a high raging phase of a cycle, but it's been an adjunct when also breathing freezing cold air at the very first sign of an attack. In warm weather this can be done by going out to the car (if you have one), blasting the A/C, sticking your shnozzola up the the vent, and doing some serious nose breathing. Then around the time a gloriously delightful in comparison ice cream type headache kicks in, the attack may just be aborted. And hey the ice cubes might even work in conjunction with the O2.

I'm not familiar with Cambia, but if that's all ya got, one trick others have used with some success with oral versions of triptans - which take a while to kick in - is to take it right before sleep, if you get the typical wake up hit about one hour after falling asleep.

A funny phenomenon some of us have experienced is we can throw back an energy shot (like the 5 hour brand) or drink (like Red Bull) to help abort a hit, then go right back to sleep.

I'd say your doc was actually correct about the Zomig at the beginning, not during.

You'll encounter numerous headbangers here who have knocked out entire cycles via the busting that CHf mentioned, and many who report good results with the D3 regimen.

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Energy beverages (the 8 oz or larger drinks and the smaller "shots") work because they have a lot of caffeine in them.  Some people credit other ingredients, such as taurine.  I'm not persuaded about that.  So straight strong coffee might work, as it does for some people.  A 5-Hour Energy shot is very potent (about twice as much caffeine as a Red Bull, for example), and you can swill it down fast. Some people say the colder the better. Surprisingly, I'm going to say that 85-90 percent of people can get back to sleep quickly after taking it during the night.

A non-rebreather mask is fine.  Read the file I linked you to for advice about how to maximize its effectiveness.  The other link I provided is to a different kind of mask made just for people with CH.  Many people say it speeds up their aborts.  (It's not technically a non-rebreather mask.)

Just to be sure -- you are getting your O2 in cylinders/tanks, not from a concentrator, which is a machine that makes O2 from room air?  Cylinders are much better than a concentrator.  (Again, there's some advice in that linked-to file about being sure your O2 supplier gives you what you need--for example, at least one very big tank and one smaller one for portability.)

240 mg verapamil might somewhat reduce attacks for some people. It is still a low dose (as is discussed in that file I linked you to).

I would say that to the extent that Zomig was making things worse for you, it was from overuse headaches, which are not really the same thing as rebound headaches.  If you don't overuse it, it's probably not going to affect your attack rate or the severity of subsequent attacks.  I am not a doctor, and there is lots of speculation about the possible "rebound" effects of triptans, but I think I am right about this.  Again -- with a proper oxygen setup properly used (along with caffeine), and with effective preventives (I think most people here would prefer the D3 regimen over verapamil), you wouldn't be turning to the triptans nearly as much (if at all).

Cambia is an NSAID.  If it worked for you, that's great.  NSAIDs typically don't work for CH, and I haven't seen any evidence that Cambia does, but maybe I missed it. Cambia is prescribed for migraine.  It's relatively slow-acting, which is okay for migraines since they typically last much longer than a CH attack.  

My point about Zomig is that you said your doctor had prescribed it "as a preventative measure."  I was just making the point that it doesn't prevent attacks (the way verapamil is supposed to, or the way the D3 regimen does), it only stops an attack that has started. So yes, you take it at the beginning of an attack.  That doesn't mean that if you don't take it in the first couple of minutes it won't help you, so I'm not sure where the specific distinction would be between "the beginning" and "during."  More effective at the beginning, but not completely ineffective during (depending, as you have said, on how far ramped-up "during" turns out to be).

 

Edited by CHfather
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....hi IFB...welcome....you've heard great stuff already...if i repeat, oh well...

My GP has changed the scrip this time to 15L/min with a non-re-breather mask, which I believe is what you're suggesting i should use.

.....some go (much) higher to find relief...don't limit yourself ...the script is just the "ticket to ride"...we each find the best flow that works...nobody else knows or cares what that is.  a non-rebreather type is vital...just make sure you are not out running the bag....better yet would be a demand valve or direct from a tube. there are various breathing techniques.....most find hyper ventilating (strong inhale/stronger exhale w/a crunch at the end) the most successful.....others do breath and hold...or, in my case, sloooooooooow breathing (calms and decrease the adrenaline/anger/angst). w/o O2 i would not be writing this...saved my sanity and perhaps life. give it your best damn shot....most successful abort for the most clusterheads. it would be a real shame to suffer needlessly by giving up too soon...

My Verapamil was increased last year to 240mg slow release. 

.....aint enough, that's actually a good STARTING point, the dosage most frequently reported successful is around is 480 mg/dy in divided doses. i went to 1040 in high cycle. immediate release thought to be more effective than slow release...do some research here for the nuances if you pursue. there can be consequential side effects so goal would be to avoid if possible .....tho good to know that clusterheads are more tolerant of these dosages than blood pressure patients...

I was taking so much Zomig, that my benefit plan started capping it. Here in Ontario, Canada,  the cost is $28 each spray.

...OXYGEN, plus energy drinks at first sign of a hit, plus Vit D3 regimen my best strategy...with Zomig NS (5 mg) as abort of last resort...and rarely needed.... but REALLY nice to have in reserve. in the US they start out with a cap...any more than 6 sprays/month is a raging battle to obtain...pricing similar for me...

When I got below 3 boes (of 2). I would literally start to panic that I wouldn't be able to find more.

....STOCKPILE in between cycles...the stuff lasts a long time. best neuro i ever had knew this strategy...too many fights with insurance for her. tho oversuse of any triptan IS problematic...ya wanna get to the point where it's a rare need....

When I first started Cambia, it was very effective. Just like Zomig was at first, but I was told Zomig was to be used at the beginning, not DURING a CH.

.....NSAIDS like Cambia rarely effective...tho many find helpful with shadows (Naproxen helped me there, nada for a full hit). danger is gastro  issues (bleeding/inflammation/upset) with continual use/oversuse. if using a triptan, the vast majority find that immediately upon feeling a hit is critical...delay tempts fate...

Maybe my GP didn't have a lot of experience in prescribing for Cluster Headaches, but I really don't think a lot of GP's have that experience.

...all too true....good reason for sites like this as we usually have to be our own advocates. except for a headache specialist, i knew more about CH than all 8 of my PCP's. my goal (successful or i left) was to find one willing to LEARN...and provide what i needed (mostly an O2 and triptan script).....

As for the energy drinks, is there a specific brand or certain product within a brand line? Or just plan old redbull ?

.....buy by content (read label...and more detail available via google search)...nearly all have higher caffeine/taurine content than Red Bull (it's just the most known). i buy brand names at outlet stores for 50-75% off. look for minimum 120 mg caffeine/1000 mg taurine..... 

I am a little concerned that an energy drink in the middle of the night, I may not get back to sleep?

....clusterheads are different animals....i could down an energy drink and sleep w/no problem.....many report same...

Mind you, the quality of sleep after a CH is pretty sh*tty.

.....i was exhausted after a hit so no problem......O2 tank next to bed just in case a cycle with the 1 -hr wake ups...

 
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1 hour ago, CHfather said:

Energy beverages (the 8 oz or larger drinks and the smaller "shots") work because they have a lot of caffeine in them.  Some people credit other ingredients, such as taurine.  I'm not persuaded about that.  So straight strong coffee might work, as it does for some people.  A 5-Hour Energy shot is very potent (about twice as much caffeine as a Red Bull, for example), and you can swill it down fast. Some people say the colder the better. Surprisingly, I'm going to say that 85-90 percent of people can get back to sleep quickly after taking it during the night.

A non-rebreather mask is fine.  Read the file I linked you to for advice about how to maximize its effectiveness.  The other link I provided is to a different kind of mask made just for people with CH.  Many people say it speeds up their aborts.  (It's not technically a non-rebreather mask.)

Just to be sure -- you are getting your O2 in cylinders/tanks, not from a concentrator, which is a machine that makes O2 from room air?  Cylinders are much better than a concentrator.  (Again, there's some advice in that linked-to file about being sure your O2 supplier gives you what you need--for example, at least one very big tank and one smaller one for portability.)

i will b e getting tanks from a medical o2 supplier. 
that mask looks good, but it $25us and shipping is $32us , that’s over $70Canadian

i wonder if a similar mask is available to us Canadians.  

Quote

240 mg verapamil might somewhat reduce attacks for some people. It is still a low dose (as is discussed in that file I linked you to).

I would say that to the extent that Zomig was making things worse for you, it was from overuse headaches, which are not really the same thing as rebound headaches.  If you don't overuse it, it's probably not going to affect your attack rate or the severity of subsequent attacks.  I am not a doctor, and there is lots of speculation about the possible "rebound" effects of triptans, but I think I am right about this.  Again -- with a proper oxygen setup properly used (along with caffeine), and with effective preventives (I think most people here would prefer the D3 regimen over verapamil), you wouldn't be turning to the triptans nearly as much (if at all).

Cambia is an NSAID.  If it worked for you, that's great.  NSAIDs typically don't work for CH, and I haven't seen any evidence that Cambia does, but maybe I missed it. Cambia is prescribed for migraine.  It's relatively slow-acting, which is okay for migraines since they typically last much longer than a CH attack.  

My point about Zomig is that you said your doctor had prescribed it "as a preventative measure."  I was just making the point that it doesn't prevent attacks (the way verapamil is supposed to, or the way the D3 regimen does), it only stops an attack that has started. So yes, you take it at the beginning of an attack.  That doesn't mean that if you don't take it in the first couple of minutes it won't help you, so I'm not sure where the specific distinction would be between "the beginning" and "during."  More effective at the beginning, but not completely ineffective during (depending, as you have said, on how far ramped-up "during" turns out to be).

I meant that Zomig worked better at the beginning of the CH, but not sure how deep I am when it becomes strong enough to wake me , as it did just 20 mins ago

 

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