Effectiveness Imigran /sumatriptan injections.

Hi all,

I've had the occipital nerve stimulation implant done last year January. It worked well for +/- 1 year and then the attacks came back. Now i have around 6 to 8 attacks a day again. But the thing that worries me is that imigran does not seem to be real effective anymore. It works......but it takes a long time to kick in. It looks like ch always finds a way around 'solutions'. Do other people notice the same?

Regards,

Globi

Globi wrote on Mar 7^th, 2013 at 2:43am:

It looks like ch always finds a way around 'solutions'. Do other people notice the same?

Yes, that's why I have multiple weapons at my disposal. Sometimes one works, sometimes another. Sometimes a different than usual combination works. Occasionally, twice at least, nothing worked and I went into a black bag of unrelenting pain for hours. Fortunately, only twice in 35 years. Good luck and God bless. lance

wimsey1 wrote on Mar 7^th, 2013 at 8:25am:

Globi wrote on Mar 7th, 2013 at 2:43am: It looks like ch always finds a way around 'solutions'. Do other people notice the same? Yes, that's why I have multiple weapons at my disposal. Sometimes one works, sometimes another. Sometimes a different than usual combination works. Occasionally, twice at least, nothing worked and I went into a black bag of unrelenting pain for hours. Fortunately, only twice in 35 years. Good luck and God bless. lance

Thanks.

What other methods do you use?

Kind regards,

Globi

Follow this link to the medications section of this board and read the post 

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

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

This is an excerpt from the current posting:

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

I've been pain free on this regimen for almost 3 years, after well over 30 years of episodic CH. PLEASE check this out...

JOe

Guiseppi wrote on Mar 7^th, 2013 at 9:05am:

Follow this link to the medications section of this board and read the post  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH! This is an excerpt from the current posting: As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate. Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days I've been pain free on this regimen for almost 3 years, after well over 30 years of episodic CH. PLEASE check this out... JOe

I've seen it. My neurologist advised against it. I have another disease affecting my kidneys. A lot of d vitamins would probably harm more the doing good.

Sorry to hear that, sounds like you've got a pretty full plate. :-/ Have you previously tried oxygen as an abortive?

Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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


Joe

Guiseppi wrote on Mar 7^th, 2013 at 9:09am:

Sorry to hear that, sounds like you've got a pretty full plate. :-/ Have you previously tried oxygen as an abortive? Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Joe

I've tried it a few times. For me it did not work at all. For my mother it did. The only things that works for me is imigran......sometimes verapamil and I think topamax. But topamax made me really weird and out of this world. Next to this i've tried all (?) normal medication and most natural remedies. From acupuncture to Ganglion burning and removing amalgan from my teeth. The lucky thing i do have is a good insurance. It's a good system. All are equal here. If i read some stories here from people in the US who's insurance will not even pay for oxygen.......i do not think i could manage that. If i use 10 shots of imigran a day my insurance will cover that.

Guiseppi wrote on Mar 7^th, 2013 at 9:09am:

Sorry to hear that, sounds like you've got a pretty full plate. :-/ Have you previously tried oxygen as an abortive? Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Joe

I have aborted within 2 minutes if you treat the first signs.  Then you keep on it at a lower LPM for the KO.

Chad wrote on Mar 7^th, 2013 at 11:27am:

Guiseppi wrote on Mar 7th, 2013 at 9:09am: Sorry to hear that, sounds like you've got a pretty full plate. :-/ Have you previously tried oxygen as an abortive? Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Joe I have aborted within 2 minutes if you treat the first signs.  Then you keep on it at a lower LPM for the KO.

So how do you treat the first signs to make o2 successful?

Consider printing this abstract and asking your doc about doing a trial. It's almost as fast acting as sumatriptan and has the convenience of being a pill. After my first use it became my only abortive for years until I aged out of having Cluster.
====
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

Bob Johnson wrote on Mar 7^th, 2013 at 3:30pm:

Consider printing this abstract and asking your doc about doing a trial. It's almost as fast acting as sumatriptan and has the convenience of being a pill. After my first use it became my only abortive for years until I aged out of having Cluster. ==== Headache 2001 Sep;41(8):813-6  Olanzapine as an Abortive Agent for Cluster Headache. Rozen TD. Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa. OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE. PMID 11576207 PubMed -------------------------------------------------------------------------------- Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ. ===== Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

Never even heard about it. Maybe site affects?

Globi, you asked what my "routine" was, since it is a step ladder of sorts. Here's what I do:

1. The first "sign" is a kind of aura I get; it could be a burning sensation in the nose, an icepick in the eye stab, or a mounting pressure. Any of which alerts me that a hit is coming in the next minute or so.

2. I first go to O2: high flow, 25lpm+. This is essnetial. Low flow will help some but not to the same extent.

3. If #2 did not work, I will chug a double Monster and continue the O2. Rarely does this fail.

4. If #3 did not work within 5-10 minutes, I will either go for the imitrex (if I'm not at home) or the Migranal (if I am at home).  The trex is faster but doesn't last as long. The DHE is slower but lasts 24-36 hours.

5. I have not ever had the above fail. If it did I would be in the black screaming bag and off to the ER for IV DHE and a strong course of steroids.

All of this coupled with proper preventatives keeps the CHs managed, not cured. Last summer I had an ONB done which kicked me into remission. Hope this helps. God bless. lance

Globi wrote on Mar 7^th, 2013 at 1:56pm:

I have aborted within 2 minutes if you treat the first signs.  Then you keep on it at a lower LPM for the KO.So how do you treat the first signs to make o2 successful?

The very first tingle or start of a shadow and i'm on the tank.  Once you get it down, you'll never use a triptan again.  If you do use an injection, use the Imitrex tip to conserve and reduce the rebound HA's.

Too much Triptans = Rebound CH

wimsey1 wrote on Mar 8^th, 2013 at 8:28am:

Globi, you asked what my "routine" was, since it is a step ladder of sorts. Here's what I do: 1. The first "sign" is a kind of aura I get; it could be a burning sensation in the nose, an icepick in the eye stab, or a mounting pressure. Any of which alerts me that a hit is coming in the next minute or so. 2. I first go to O2: high flow, 25lpm+. This is essnetial. Low flow will help some but not to the same extent. 3. If #2 did not work, I will chug a double Monster and continue the O2. Rarely does this fail. 4. If #3 did not work within 5-10 minutes, I will either go for the imitrex (if I'm not at home) or the Migranal (if I am at home).  The trex is faster but doesn't last as long. The DHE is slower but lasts 24-36 hours. 5. I have not ever had the above fail. If it did I would be in the black screaming bag and off to the ER for IV DHE and a strong course of steroids. All of this coupled with proper preventatives keeps the CHs managed, not cured. Last summer I had an ONB done which kicked me into remission. Hope this helps. God bless. lance

I am starting to wonder if the company here gave me the right equipment for o2.  Next to this i do no have a idea what an ONB is. Occipital Nerverve .....? I am dutch.

Chad wrote on Mar 8^th, 2013 at 11:48am:

Globi wrote on Mar 7th, 2013 at 1:56pm: I have aborted within 2 minutes if you treat the first signs.  Then you keep on it at a lower LPM for the KO.So how do you treat the first signs to make o2 successful? The very first tingle or start of a shadow and i'm on the tank.  Once you get it down, you'll never use a triptan again.  If you do use an injection, use the Imitrex tip to conserve and reduce the rebound HA's. Too much Triptans = Rebound CH

True. I had a long and difficult discussion about this with GSK. They just don't care.

Globi wrote on Mar 8^th, 2013 at 6:08pm:

I am starting to wonder if the company here gave me the right equipment for o2.  Next to this i do no have a idea what an ONB is. Occipital Nerverve .....? I am dutch.

Is your mask a non-rebreather mask?  It is important to have that check valve while exhaling because you don't want any carbon dioxide in the mask.  Also, make sure that regulator is a minimum of 15 lpm.  Some need much more, but its a good starting point.

Chad wrote on Mar 8^th, 2013 at 10:21pm:

Globi wrote on Mar 8th, 2013 at 6:08pm: I am starting to wonder if the company here gave me the right equipment for o2.  Next to this i do no have a idea what an ONB is. Occipital Nerverve .....? I am dutch. Is your mask a non-rebreather mask?  It is important to have that check valve while exhaling because you don't want any carbon dioxide in the mask.  Also, make sure that regulator is a minimum of 15 lpm.  Some need much more, but its a good starting point.

Yes. The first time it was wrong. My mother has ch as well hen she visited she use it and it worked. Same setup as in her home. And now? Back to verapamil, shots of imigran and a lot of depression. KIP9 is the story then "why me". And we all deal with that.

Globi, ONB stands for Occipital Nerve Block. It is an injection to the affected side on the back of the head, under the scalp. The injection consists of a combination of steroids and some topical numbing agent like lidocaine. Results are mixed in our little community but it helped me. Safe, and I think ought to be on the list of what the heck, I've tried everything else. blessings. lance