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amyorr

Thank God for this forum and a few questions!

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I have been quietly lurking on these forums for over 20 years now.  I haven't had to post because I  usually found the answers to everything I needed.  My CH occur every 24 months for 2-4 weeks since 1997.  It took many misdiagnoses, incorrect medications, MRI, IV anti-inflammatory drips and trips to emerg before someone finally mentioned Cluster Headache.  I consider myself a veteran now - when the beast appears, I get my Imitrex, Verapamil, Oxygen and lorazapam meds handy, inform my employer and let my supportive family know I am fighting the beast again for awhile and it takes everything out of me.  Every cycle brings me back here to reread breathing techniques, follow new studies and look for something new to try.  I have not tried Vitamin M but that is next on my list to try to extend my remission period.  So first THANK YOU SO MUCH for all of your valuable information and support.  I have a useless doctor who has never done any research for me despite my long history of the disease.  My questions: 

1.  I live in Canada and my pharmacist says the Imitrex injectable vials are "discontinued."  I have only ever used Imitrex nasal spray but they leave me feeling dizzy and eventually stop working early in my cycle. I would like to use the injectable form next cycle- any suggestions for me to find this on my own?

2.  I read that Zomig may be more effective - is this in a nasal spray or injectable as well?  Should I try that next cycle if I can't get the injectable Imitrex? 

3.  Verapamil - first time I was prescribed it as a preventative I began taking it in July (2013- expected cycle) and had shadows.  Verapamil worked to prevent the cycle and I stayed on it for 6 months to xmas.  I weaned off Verapamil a few days before xmas and 2 days later the beast hit.  The verapamil only delayed the cycle but it often feels like it won't let me get away with anything without taking me down first!!!!

4.  I am into week 4 of my current cycle.  The Vit D protocol and Verapamil together bring down the intensity and frequency of the hits.  I have had a few PF nights.  However, this morning I woke up from a dream ( as usual - most of my attacks come right out of REM sleep) at 5am to an intense HA that I first tried to hit with oxygen, then Immitrex....then gave up wimpering in the shower and sobbing myself to sleep.  The lastest addition to my clusters is the Panic Attack which has me vomiting along with the beast.  The lorazapem helps to relax me so I can focus on just breathing through the beast.  Four hours later, I woke up feeling dizzy, weak, exhausted with no head ache.  This usually signals the end of my cycle.  So why when I see the effects of the verapamil and Vit D for a week or more do I still get whacked at least one good time before the beast quits?  It's like he has to win every god damn time!!!!!

Sorry for the rant.  As you all will agree, no one really understands what I am going unless you have been there with me :(

Looking forward to any thoughts,

Amy

 

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3 hours ago, amyorr said:

1.  I live in Canada and my pharmacist says the Imitrex injectable vials are "discontinued."  I have only ever used Imitrex nasal spray but they leave me feeling dizzy and eventually stop working early in my cycle. I would like to use the injectable form next cycle- any suggestions for me to find this on my own?

We have heard the rumor before about injectable Imitrex not being available in Canada.  From all reports, it isn't true.  There was some kind of a shortage a while back.  I'm a little confused by what you have written because vials are not the same thing as the autoinjector.  With vials, you get the Imitrex and you use a syringe to draw the amount you want out of the vial; autoinjectors come filled with sumatriptan and a syringe needle, you push a button to inject it.  I don't know of the status of vials in Canada.  They are definitely a better way to go because you can use only what you need, which for most people is about 2 or 3mg, whereas the standard autoinjector has much more than you need, 6 mg.  Many people take apart the autoinjector so they can give themselves injections of smaller amounts, but that's not simple to do for everyone.  There is also a 4 mg autoinjector of sumatriptan. I don't remember the brand name.  This is kind of a compromise -- it's still more sumatriptan than you need, but at least it's not 6 mg.

3 hours ago, amyorr said:

2.  I read that Zomig may be more effective - is this in a nasal spray or injectable as well?  Should I try that next cycle if I can't get the injectable Imitrex? 

I'm pretty sure that Zomig is just a nasal spray.  It's a different triptan (zolmitriptan).  Don't know if it would affect you differently.

 

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Hiya Amy,

1.  I live in Canada and my pharmacist says the Imitrex injectable vials are "discontinued."  I have only ever used Imitrex nasal spray but they leave me feeling dizzy and eventually stop working early in my cycle. I would like to use the injectable form next cycle- any suggestions for me to find this on my own?

Not sure why we keep hearing this…I don’t think it’s correct…check out these threads..

https://clusterbusters.org/forums/topic/5614-imitrex-injections-discontinued-in-canada/?tab=comments#comment-56604

https://clusterbusters.org/forums/topic/5745-my-experience-with-ch/?tab=comments#comment-57517

Suspect that in this world of statdoses and convenience there is a low demand so a low supply for a product requiring syringes, vials and draw ups. I never thot a big deal….but ???

Injectable should be quicker. Many folks find that the statdoses are too big a hammer (4-6 mg) and get by with 2-3 mg after dose pen tear down or the aforementioned vials….and therefore fewer side effects and possibly lesser chance of rebounds or negative cycle effects…

(edit...sorry...didn't see CHf reply)

2.  I read that Zomig may be more effective - is this in a nasal spray or injectable as well?  Should I try that next cycle if I can't get the injectable Imitrex? 

It's nasal spray, I use the 5 mg version as my abort of last resort when oxygen, energy drinks and (formerly) verapamil insufficient. For me is superior to imitrex: 99+% effective within 10 mins, 18 hr ‘free” time, minimal side effects, no rebounds, no negative cycle effects, easily carried, unobtrusive usage. Similar (HIGH) price to other triptans…comes in boxes of 6. It would be really neat if you could get a sample from your doc to try…as my experience may be unusual…

3.  Verapamil - first time I was prescribed it as a preventative I began taking it in July (2013- expected cycle) and had shadows.  Verapamil worked to prevent the cycle and I stayed on it for 6 months to xmas.  I weaned off Verapamil a few days before xmas and 2 days later the beast hit.  The verapamil only delayed the cycle but it often feels like it won't let me get away with anything without taking me down first!!!!

Whether to stay on or change dosage or form is a question only you and your doc can answer. I stayed on IR year-round because of rapid on/off CH cycling. Many (not ALL) find immediate release (IR) superior to extended release (ER). Sweet spot reported to be 480 mg/dy in divided doses….I would go over 1000 mg in high cycle….timed to expected hit times being somewhat more effective….

 

4.  I am into week 4 of my current cycle.  The Vit D protocol and Verapamil together bring down the intensity and frequency of the hits.  I have had a few PF nights.  However, this morning I woke up from a dream ( as usual - most of my attacks come right out of REM sleep) at 5am to an intense HA that I first tried to hit with oxygen, then Immitrex....then gave up wimpering in the shower and sobbing myself to sleep.  The lastest addition to my clusters is the Panic Attack which has me vomiting along with the beast.  The lorazapem helps to relax me so I can focus on just breathing through the beast.  Four hours later, I woke up feeling dizzy, weak, exhausted with no head ache.  This usually signals the end of my cycle.  So why when I see the effects of the verapamil and Vit D for a week or more do I still get whacked at least one good time before the beast quits?  It's like he has to win every god damn time!!!!!

When episodic (years) I knew that the cycle was over when I got BLASTED by the worst hit of the cycle (which is saying a LOT). Used to crave-yearn-pray for that hit…weird yes, but I KNEW what it meant. The “beast” as an entity vs a medical condition would be affirmed by many a clusterhead…it seems to be “alive”, with a will, a vindictiveness, and an evil intent that is spooky………..

 

Many find energy drinks…drank COLD and FAST at first sign of a hit…then hit the O2… to be quite effective. Minimum 100 mg caffeine and 1000 mg taurine (caffeine booster)…bought by price not brand as they mostly taste AWFUL....which at the time I don't care.  The 2 oz 5-hr energy drinks have the advantage of portability and quick use. Lotsa sugar in most….look for sugar free WITHOUT aspartame (a trigger). I purchased at discount grocery stores for less than a buck per...

Sorry for the rant.  As you all will agree, no one really understands what I am going unless you have been there with me

Aint no rants in clusterville…we share…yours nicely written!

 

Best

 

Jon

 

Edited by jon019

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15 hours ago, CHfather said:

We have heard the rumor before about injectable Imitrex not being available in Canada.  From all reports, it isn't true.  There was some kind of a shortage a while back.  I'm a little confused by what you have written because vials are not the same thing as the autoinjector.  With vials, you get the Imitrex and you use a syringe to draw the amount you want out of the vial; autoinjectors come filled with sumatriptan and a syringe needle, you push a button to inject it.  I don't know of the status of vials in Canada.  They are definitely a better way to go because you can use only what you need, which for most people is about 2 or 3mg, whereas the standard autoinjector has much more than you need, 6 mg.  Many people take apart the autoinjector so they can give themselves injections of smaller amounts, but that's not simple to do for everyone.  There is also a 4 mg autoinjector of sumatriptan. I don't remember the brand name.  This is kind of a compromise -- it's still more sumatriptan than you need, but at least it's not 6 mg.

I'm pretty sure that Zomig is just a nasal spray.  It's a different triptan (zolmitriptan).  Don't know if it would affect you differently.

 

I too am confused about the Imitrex!  Thanks for the explanation.  My doctor "laughs" at me when I suggest anything from the "internet" that may help me.  I have a lovely pharmacist who is more eager to help.  I will keep looking for the vials for next time.  I hope to be done this cycle soon.  I will admit that injections seem a bit scary but I am willing to try anything now.  

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8 hours ago, jon019 said:

Hiya Amy,

1.  I live in Canada and my pharmacist says the Imitrex injectable vials are "discontinued."  I have only ever used Imitrex nasal spray but they leave me feeling dizzy and eventually stop working early in my cycle. I would like to use the injectable form next cycle- any suggestions for me to find this on my own?

Not sure why we keep hearing this…I don’t think it’s correct…check out these threads..

https://clusterbusters.org/forums/topic/5614-imitrex-injections-discontinued-in-canada/?tab=comments#comment-56604

https://clusterbusters.org/forums/topic/5745-my-experience-with-ch/?tab=comments#comment-57517

Suspect that in this world of statdoses and convenience there is a low demand so a low supply for a product requiring syringes, vials and draw ups. I never thot a big deal….but ???

Injectable should be quicker. Many folks find that the statdoses are too big a hammer (4-6 mg) and get by with 2-3 mg after dose pen tear down or the aforementioned vials….and therefore fewer side effects and possibly lesser chance of rebounds or negative cycle effects…

(edit...sorry...didn't see CHf reply)

2.  I read that Zomig may be more effective - is this in a nasal spray or injectable as well?  Should I try that next cycle if I can't get the injectable Imitrex? 

It's nasal spray, I use the 5 mg version as my abort of last resort when oxygen, energy drinks and (formerly) verapamil insufficient. For me is superior to imitrex: 99+% effective within 10 mins, 18 hr ‘free” time, minimal side effects, no rebounds, no negative cycle effects, easily carried, unobtrusive usage. Similar (HIGH) price to other triptans…comes in boxes of 6. It would be really neat if you could get a sample from your doc to try…as my experience may be unusual…

3.  Verapamil - first time I was prescribed it as a preventative I began taking it in July (2013- expected cycle) and had shadows.  Verapamil worked to prevent the cycle and I stayed on it for 6 months to xmas.  I weaned off Verapamil a few days before xmas and 2 days later the beast hit.  The verapamil only delayed the cycle but it often feels like it won't let me get away with anything without taking me down first!!!!

Whether to stay on or change dosage or form is a question only you and your doc can answer. I stayed on IR year-round because of rapid on/off CH cycling. Many (not ALL) find immediate release (IR) superior to extended release (ER). Sweet spot reported to be 480 mg/dy in divided doses….I would go over 1000 mg in high cycle….timed to expected hit times being somewhat more effective….

 

4.  I am into week 4 of my current cycle.  The Vit D protocol and Verapamil together bring down the intensity and frequency of the hits.  I have had a few PF nights.  However, this morning I woke up from a dream ( as usual - most of my attacks come right out of REM sleep) at 5am to an intense HA that I first tried to hit with oxygen, then Immitrex....then gave up wimpering in the shower and sobbing myself to sleep.  The lastest addition to my clusters is the Panic Attack which has me vomiting along with the beast.  The lorazapem helps to relax me so I can focus on just breathing through the beast.  Four hours later, I woke up feeling dizzy, weak, exhausted with no head ache.  This usually signals the end of my cycle.  So why when I see the effects of the verapamil and Vit D for a week or more do I still get whacked at least one good time before the beast quits?  It's like he has to win every god damn time!!!!!

When episodic (years) I knew that the cycle was over when I got BLASTED by the worst hit of the cycle (which is saying a LOT). Used to crave-yearn-pray for that hit…weird yes, but I KNEW what it meant. The “beast” as an entity vs a medical condition would be affirmed by many a clusterhead…it seems to be “alive”, with a will, a vindictiveness, and an evil intent that is spooky………..

 

Many find energy drinks…drank COLD and FAST at first sign of a hit…then hit the O2… to be quite effective. Minimum 100 mg caffeine and 1000 mg taurine (caffeine booster)…bought by price not brand as they mostly taste AWFUL....which at the time I don't care.  The 2 oz 5-hr energy drinks have the advantage of portability and quick use. Lotsa sugar in most….look for sugar free WITHOUT aspartame (a trigger). I purchased at discount grocery stores for less than a buck per...

Sorry for the rant.  As you all will agree, no one really understands what I am going unless you have been there with me

Aint no rants in clusterville…we share…yours nicely written!

 

Best

 

Jon

 

Wow - it is truly wonderful to hear from people who understand :)  I just made notes in my fat file for next time - especially the Zomig and IR Verapamil.  I totally agree about the "beast" - I call it my demon - something I need to deal with all by myself - a test of my strength.  It always wins before the end of the cluster.  I worry how I will copy when I am old and fragile.  I couldn't imagine going through that pain with a weakened body.  I really hope there is something better for us by then! 

 

As an update - I woke up at 4:30am today to avoid a repeat of the 4 hr beast I spent time with yesterday morning. I just avoid sleep :)

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Amy,

Imitrex and Verapamil did some terrible stuff to me many years ago.  I'll never touch that stuff again.  One of them (most likely the Verapamil) gave me PVC's (Premature Ventricle Contractions).  It's a type of heart palpitation that's scary as $%&#. 

I didn't read anything in your post about energy drinks.  Most of us are avid energy drink users when getting visits by the beast.  Anytime I feel an attack coming on, I slam half a can of Monster or other energy drink that has caffeine and Taurine in it.  Then immediately get on the O2.  For some reason the combination of the caffeine and taurine helps the O2 work much better.  I do the same for any night attacks.  Never had an issue falling asleep after an attack no matter how much energy drink I had. 

If you ever get to the point of busting, I'm confident you'd never look back.  Myself and thousands of others now have found busting to work better than anything the doc ever prescribed.  Most of us are able to stay pain free by taking single doses at the time our CH is going to start.  

Cheers,

J

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3 hours ago, ThatHurtsMyHead said:

Amy,

Imitrex and Verapamil did some terrible stuff to me many years ago.  I'll never touch that stuff again.  One of them (most likely the Verapamil) gave me PVC's (Premature Ventricle Contractions).  It's a type of heart palpitation that's scary as $%&#. 

I didn't read anything in your post about energy drinks.  Most of us are avid energy drink users when getting visits by the beast.  Anytime I feel an attack coming on, I slam half a can of Monster or other energy drink that has caffeine and Taurine in it.  Then immediately get on the O2.  For some reason the combination of the caffeine and taurine helps the O2 work much better.  I do the same for any night attacks.  Never had an issue falling asleep after an attack no matter how much energy drink I had. 

If you ever get to the point of busting, I'm confident you'd never look back.  Myself and thousands of others now have found busting to work better than anything the doc ever prescribed.  Most of us are able to stay pain free by taking single doses at the time our CH is going to start.  

Cheers,

J

Yes, I am worried about that as well - the side effects of both Imitrex and Verapamil.  I am interested in busting next...i'll be posting in the other board after this cycle if I have questions. As far as energy drinks go - i haven't really tried that.  My attacks come at regular intervals at night...11:30, 1:30, 3:30, 5:30 and sometimes 7:30....I am sensitive to caffeine normally so I worry I would be up all night and shift my attacks to the day!  I don't usually get hit during the day (knock on wood).  But I will keep that in mind and maybe get some in case the beast isn't done with me yet :(  Thanks for your advice.  Nice to know i am not alone. 

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amy', most people (but not all) find that an energy shot doesn't keep them awake after a nighttime hit.  Of course, your reluctance to find out how that might work for you is completely understandable.

I wonder whether melatonin at bedtime might help you. Melatonin is low in people with CH when they are in cycle.  The purpose is not to help you sleep through any attacks, but to restore melatonin to your system.  It's often recommended to start at 9mg and work up to a dose that affects your attacks.  Some people get into the high 20mgs or low 30mgs before they get help from the melatonin.

 

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I take 20 mg of Melatonin every night sometimes adding a 25mg of Benadryl depending on the season. I still get hit sometimes areoung 3am and take a 5hr energy shot without it keeping me up at all. I know everyone is different but if you are getting up every 2 hours anyway it might not be a bad thing to try. Give it a try on a weekend or some time you have nothing planned for the following day just in case you were to stay up a few hours after drinking one. 

The Melatonin and Benadryl were added to the D3 regimen I take and did help with the night hits. I also slept in a recliner for a week or so to keep my head elevated a little and that also helped.  

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I slept 7 hrs last night with no hits...only mild shadowing around 1:00am!!!  Thank you CHfather and FunTimes - I took 10 mg of melatonin before bed and had also increased my Vit D3 based on suggestions from Batch.  Trying to avoid Immitrex and am already on Verapamil but will wean off soon.  I like the recliner idea as my sinuses are always affected.  I haven't tried Benadryl yet only because I am seeing success with everything else I have thrown at it otherwise I'd be getting some today. 

Once again you are all life savers - I too have experienced the negative effects of all of the pharmaceuticals offered to us that also don't promise relief.  My next step will be to try busting in between cycles.  It's the only thing left to try :) and I trust the anecdotal evidence provided in YEARS of trial and error found in these boards.

Hugs to all of you and wishing for same for others suffering now,

Amy 

 

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On ‎11‎/‎13‎/‎2018 at 5:30 AM, amyorr said:

  My doctor "laughs" at me when I suggest anything from the "internet" that may help me. 

Personally I'd switch doctors if one laughed at me....

Internet based cluster headache communities helped save my life. I have no time for self important gasbags who believe they know it all.

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