Hi everyone, before i begin i live in scotland as i think this will have a lot of bearing on treatment.I was diagnosed with cluster headaches about 6-7 years ago but have been getting them for about 13 years, after finaly being diagnosed and seeing a neurologist i was put on verapamil, think i was started at about 240mg a day and am now on 360mg and given sumatriptan injections ie imitrex to abort them.Now at first this seemed to work ok as i had no clusters for about a year then had a cycle for about a month then pf for about 6 months ,cycle for about 2 months and so on building up with every cycle.The last cycle i had lasted about 3 months with sometimes no hits for days then 1 or 2 a day and rarely 3.This cycle has lasted since november and for the last week or so i have been getting 3 hits a day so started splitting my imitrex in half so i can abort all 3 but i am worried this is causing me more headaches but have no other relief.I went to see the gp yesterday and asked about oxygen but all that was really said was they would look into it as it really needs to be prescribed by a hospital consultant and they would also write to the neurologist.All that my visit accomplished was my verapamil was increased by 40mg which i cant see doing much.My worry is that at the moment i am trapped in a virtuous circle just now with the imitrex causing more headaches and the gp said this was prob the case but as i said i have no other form of relief, dont think i can even chug energy drinks as im on verapamil can i?Anyway thanks for any advise. :-[

I should also say that it can take a long time to see the neurologist as i live in the far north of scotland and the neuro covers a large area, thanks.

Hi, Stewart, and I'm sorry you are getting stalled on effective treatment. The verapamil is a good start but it is low, as you said. I take 560mg/day and that seems to be my sweet spot. You can chug an energy drink but it's a good idea to limit how often you do that...perhaps one a day to abort? I have found it is best when coupled with O2. You can get welder's O2 and there are seveal threads on that here. As for the imitrex causing recurring headaches, there is mixed opinion here. Some are absolutely convinced this is so. Others not so much. have you tried Migranal, or a DHE nasal spray? I alternate them (not in the same 24 hour period) to avoid just what you mention. You need a more aggressive neuro. Do whatever it takes to get one. Ask any questions. blessings. lance

stewart.d.campbell -

I'm sorry to hear about your development.

I'm no expert on Verapmil, as I've never used it, but the amount sounds low.

Regarding Imitrex: 6mg is too much.  2 or 3mg is enough.  That is my, and many other's experience.  And many people will nod in recognition of the "Imitrex rebound effect" (though not scientifically proven). I use 2mg and in severe cases 2x2mg. Another "bonus" is that the attack in the morning is less prevalent.

Check out the Imitrex tip: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It is old, but very valid.

After consulting a doctor, I'm injecting (by hand) in the belly fat.  That is most effective, and also the least uncomfortable.

But: You should also check out the Anti-Inflammatory Regimen, especially Vitamn D3 and Magnesium as discussed here:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

After more 20 years with CH there is a very significant before/after I begun on this in June 2011.  I still have CH, but the pattern is dramatically changed, and the pain level far less crippling. 

Best of luck!

Hey Stewart,

Sorry you're having a tough time with your cluster headaches and the physicians who treat you for this disorder...  We know what that's like.

For starters, it's entirely possible to get too much imitrex (sumatriptan succinate) or to take it for too long a period of time.  The symptoms vary, but a heavy chest and more frequent and severe cluster headaches are the classic indications...  Angina is also possible.

Regarding obtaining an Rx for home oxygen therapy...  Fill out the attached Home Oxygen Order Form (HOOF) and take it to your PCP for his/her signature.  The folks at OUCH (UK) at the following link and phone number will be happy to guide you through the maze of your NHS bureaucratic BS to obtain home oxygen therapy as an abortive for your cluster headaches.

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

OUCH (UK) Help Line Phone Number:  0 1646 651 979

Check your PM...  I've sent you some additional info.

Take care and please keep us posted.

V/R,

Batch

---

Hi, i am already using the imitrex tip by splitting my injections in half (tried splitting into 3 ie 2mg a time, wasnt enough to abort).Got vitamin d3 and omega 3 oil today to try the Anti-Inflammatory.Tried injecting in the belly, not for me still got a big bruise over a week later, always use the thigh myself but have used my arm as well, had to delete the links in your post to be able to post a quote of it, thanks.
Zeitgeist wrote on Apr 12^th, 2013 at 2:11pm:

stewart.d.campbell - I'm sorry to hear about your development. I'm no expert on Verapmil, as I've never used it, but the amount sounds low. Regarding Imitrex: 6mg is too much.  2 or 3mg is enough.  That is my, and many other's experience.  And many people will nod in recognition of the "Imitrex rebound effect" (though not scientifically proven). I use 2mg and in severe cases 2x2mg. Another "bonus" is that the attack in the morning is less prevalent. Check out the Imitrex tip: It is old, but very valid. After consulting a doctor, I'm injecting (by hand) in the belly fat.  That is most effective, and also the least uncomfortable. But: You should also check out the Anti-Inflammatory Regimen, especially Vitamn D3 and Magnesium as discussed here: After more 20 years with CH there is a very significant before/after I begun on this in June 2011.  I still have CH, but the pattern is dramatically changed, and the pain level far less crippling.  Best of luck!

Am i not right in thinking that as im in scotland its a SHOOF and can only be authorised by a neurologist, they just cant put enough obstacles in your way can they.
Batch wrote on Apr 12^th, 2013 at 2:17pm:

Hey Stewart, Sorry you're having a tough time with your cluster headaches and the physicians who treat you for this disorder...  We know what that's like. For starters, it's entirely possible to get too much imitrex (sumatriptan succinate) or to take it for too long a period of time.  The symptoms vary, but a heavy chest and more frequent and severe cluster headaches are the classic indications...  Angina is also possible. Regarding obtaining an Rx for home oxygen therapy...  Fill out the attached Home Oxygen Order Form (HOOF) and take it to your PCP for his/her signature.  The folks at OUCH (UK) at the following link and phone number will be happy to guide you through the maze of your NHS bureaucratic BS to obtain home oxygen therapy as an abortive for your cluster headaches. OUCH (UK) Help Line Phone Number:  0 1646 651 979 Check your PM...  I've sent you some additional info. Take care and please keep us posted. V/R, Batch

And I thought Scotland was part of the UK so had the same NHS... Foolishly me...

Again... the good people at OUCH(UK) know the well beaten path to obtaining home oxygen therapy as an abortive for cluster headache.

I'll wager there's no problem buying a fine bottle of single malt is there?

Please keep us in the loop Stewart.

V/R, Batch

cheers

That verapamil dose is low but it does seem to vaty per individual. Make sure that the GP has not prescribed the SR (slow release) version. Must be standard or fast acting and split into 3 x a day. I'm on 360mg 3 x daily and can sometimes taper it down to as liitle as a total of 480mg a day - anything less and its no good.
If you don't enjoy the Red Bull, Monster trick then try a double espresso at the first sign of  ch - both tend to work for me if I catch it early. I find a big caffeine hit  does abort for a few hours but the beast always returns wthin hours. Oxygen still the best abortive, 15l a min works for me but the cluster also always returns a few hours later. Only Sumatriptan 6mg injections abort properly for me.
I'm chronic so maybe thats why the heavy dosages but it may be worthwhile to up the verapamil till you notice a change but check with the doc and watch the lowering of your blood pressure.

So I am what you would call A CHRONIC Clusterhead.
At least one a night every night for the past 6 years.

Oxygen is imperative!  If you can buy the Devo2therapy demand valve and or the o2ptimask with a high flow regulator.  I just ordered one of these myself as I have read over and over how spectacular they are. 

I have been using imitrex injections nightly for years...  I don't know the answer.  I have read rebound is only prevalent in migraines not cluster, but I really don't know.  On the nights when I get 3- 4 ???  I use 2-3 in the belly.  With the O2 running.

Verapamil, Topamax, while I am on them never really had any effect one way or the other for me.  Quitting smoking did.  Losing weight did.

I am new to this site, but that is my two cents...  wish you relief. 

NotbeatingmeSA wrote on Apr 13^th, 2013 at 12:20am:

Make sure that the GP has not prescribed the SR (slow release) version. Must be standard or fast acting and split into 3 x a day.

Whilst for many people the standard form is best, others (including myself) get the best relief from the SR form. It is often a matter of trying both to see what works best, allowing enough time for the change in formulation to take effect before deciding.

Similarly whilst splitting the dose into three will work for many, sometimes it is a matter of adjusting the dose to match when the CHs tend to hit, so if most are overnight it could be split so that a higher dose is taken in the evening and a much lower dose in the morning.

You need to work with your doctor on what the dose should be, what form and how to split it as all three can make a difference to the results.

Hi and welcome Mike

You're right on the o2ptimask being a good idea as everyone who has one seems to love it and the difference it makes.

For imitrex whilst they are great for killing off a CH when you're not near oxygen, lots of people are convinced that all it seems to do is to just delay the CH itself

For verapamil and topomax, what dose did you try and for how long? It is common when people say things didn't work that they were on far too low a dose or for too short a time.

Keep reading and you'll learn lots!

Mike NZ wrote:
Quote:

Whilst for many people the standard form is best, others (including myself) get the best relief from the SR form. It is often a matter of trying both to see what works best, allowing enough time for the change in formulation to take effect before deciding.

Thank you, Mike, that is exactly what I was going to say. I take 240mg slow release coupled with 320mg quick release and this combo works to help manage my attacks. It is an art more than a science but for me, worth experimenting with until I got it right. blessings. lance

How about going on steroids for a week....

I was able to stop using my DHE injections very (temporarily) and then was awaken with a (\/)oNSter cluster that required an Imitrex injection. I had to use 7 Imitrex injections (4mg) that day before I said 'enough is enough' and started on a Medrol Dose Pak. No more Imitrex being used now and back on DHE twice daily to PREVENT the attacks.

Asking your doc about going on steroids doesn't sound like a bad idea for you right now.

PS> Don't mix DHE & Imitrex (Triptans)

I4B