hi my name is Angie im 37 years old and started with clusters at 21  :'( i was at the end of my pregnancy at the time so you can imagine  :oi wasn't diagnosed with clusters until about six years ago so as you can imagine i have been on all the meds like so many of you guys none of which have worked ive had two scans just like so many of you until i was diagnosed i could kiss the doc that diagnosed me i call him my lifesaver i am now on imigran injections thank god for whoever invented these they work for me yeah i feel sick for about an hour but i would rather that than screaming in agony i have to say when i read some of the stories you guyshad written i started to cry i was truly overwhelmed it is so hard to believe there are other people feeling and saying the same things i dont know if anyone else has mentioned this but i have had three pregnancies in my second pregnancy i had no clusters and in my last i had two weeks of clusters towards the end i dont know if any one knows of any research into this i guess i could keep getting pregnant to keep the demon at bay lol thats enough from me now or i could go on forever just so glad i found this site am going through a bout at the mo so i need you guys Angie x

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Welcome; explore the buttons, left, starting with OUCH and let us know what specific kinds of support/information you wish.

Hi Angie and welcome to the place where we all understand about CHs.

As Bob mentioned, the more you can tell us, the more we can help with hints, tips and suggestions.

There is a huge wealth of info here on the forums, read and read and read, you'll soon know more than most doctors do about CHs, what works and what doesn't.

Ask questions, we'll try to answer them based on our collective experience.

Hi Angie - glad to hear that you've at least gained a degree of control over this beast with the injections.

Just checkin': Are you using the invaluable, game changing partial dose approach with the injections as outlined here?: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

You've probably noticed that many of us have adopted high flow 100% O2 as our primary abortive and save the imitrex (imigran) for emergencies, this is an approach that can work really well. Here's the O2 link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And we're only talking about abortives so far. Lotsa progress has been made on the prevention front too, with the vitamin D3 regimen START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and clusterbusters approach START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE being 2 of my personal faves.

Your beast fighting prowess has only just begun!  :)

You have much reading to do! Knowledge is your best ally against the beast, a quick overview of how I treat my CH, I'm 51, a 33 year episodic CH'er:

Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line 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


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

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


Joe

Hello Angie & Welcome Home

   . . . . and ditto the above.

  I too shed many tears when I came here (2/02) . . . FINALLY finding others who know this beast of ours and, more importantly, having info I could take to my doc and begin to have some understanding/control.

  One of my favorite motto's here is, "Nothing works for everyone, but SOMETHING works for everyone", and here you have a very good chance of finding the "something" that works for you.

   Be Safe,   PFDANs

      Richard

evie wrote on Aug 13^th, 2011 at 10:46am:

hi my name is Angie im 37 years old and started with clusters at 21  :'( i was at the end of my pregnancy at the time so you can imagine  :oi wasn't diagnosed with clusters until about six years ago so as you can imagine i have been on all the meds like so many of you guys none of which have worked ive had two scans just like so many of you until i was diagnosed i could kiss the doc that diagnosed me i call him my lifesaver i am now on imigran injections thank god for whoever invented these they work for me yeah i feel sick for about an hour but i would rather that than screaming in agony i have to say when i read some of the stories you guyshad written i started to cry i was truly overwhelmed it is so hard to believe there are other people feeling and saying the same things i dont know if anyone else has mentioned this but i have had three pregnancies in my second pregnancy i had no clusters and in my last i had two weeks of clusters towards the end i dont know if any one knows of any research into this i guess i could keep getting pregnant to keep the demon at bay lol thats enough from me now or i could go on forever just so glad i found this site am going through a bout at the mo so i need you guys Angie x

Yep thank God for imigran,it aborts my attacks in minuets
though you can only have 2 injections in 24 hours. during the height of my CH cycle I was having 8-10 attacks per
day and just had to suffer them as I had used my injections up. I have O2 now but as many sufferers say - you have to be quick with the mask for it to work.

gezz wrote on Aug 14^th, 2011 at 7:54pm:

Yep thank God for imigran,it aborts my attacks in minuets though you can only have 2 injections in 24 hours. during the height of my CH cycle I was having 8-10 attacks per day and just had to suffer them as I had used my injections up. I have O2 now but as many sufferers say - you have to be quick with the mask for it to work.

Gezz - hopefully you've also become aware of the partial dose method that allows you to stretch injection doses so you can get 3 or so aborts from one 6 mg syringe? START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

bejeeber wrote on Aug 15^th, 2011 at 3:29pm:

gezz wrote on Aug 14th, 2011 at 7:54pm: Yep thank God for imigran,it aborts my attacks in minuets though you can only have 2 injections in 24 hours. during the height of my CH cycle I was having 8-10 attacks per day and just had to suffer them as I had used my injections up. I have O2 now but as many sufferers say - you have to be quick with the mask for it to work. Gezz - hopefully you've also become aware of the partial dose method that allows you to stretch injection doses so you can get 3 or so aborts from one 6 mg syringe? START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Thanks for that, i was not aware I will look it up
gezz

gezz, where do you live as Bob Johson asked?  We have a dedicated list of sufferer reccomended Drs. who we may be able to steer you in the right direction...but not if we don't know whwere you are.

We're here to help.

Hi there Angie

I too am in the UK and went through more than a few years before I was diagnosed. I never suffered them in pregnancy though.
Taking on board, and fully understanding, your love of the 'Imigram' injections, I have to concur with our friends above who refered you to the O2 page.
I had a monster three months from last November to early Feb, eight attacks per day, all at the top end of the KIP scale, with pretty constant shaddows in between. I was left exhausted, depressed etc...
After that, I found this place and took as much as I could on board. I got my neuro to prescribe O2, it wasn't easy, by any means. NHS just don't seem to get it like they clearly do in other countries. But having got the stuff, my last episode, admittedly a lesser one, was an absolute breeze. The O2 worked like a dream and I only had to inject a couple of times. Both night attacks, which had gone too far, I think, before I'd got the mask on. Also, though I aint no doctor, I'd imagine that if you were pregnant the O2 would be less likely to have side effects, just in case you're planning more.
Anyhow, hope you hav PFDAN

All the best

Andrew

hi everyone thanks for all the great advice i have an appointment at the docs on monday will def enquire about the o2 i am having a bad time at the mo still getting the clusters only had two hours sleep last night really fed up  :'(cant take thekids anywhere in this lovely weather my husbands fed up toofinding it hard to cope  :(can any one recommend anything to relieve the blocked nose part its driving me mad  >:(would give anything at the mo for one nights sleep its been 3 weeks now of up to 6 a day  :'(

Evie

Sorry to hear that you're having such a bad time at the moment.

If your GP is reluctant or refuses to prescribe O2 it is worth referring him/her to the relevant section in the BNF (British National Formulary) 4.7.4.3 and it states "Oxygen is also suggested" for the relief of the pain of cluster headache. Your GP CAN prescribe it!

Why don't you call the OUCH(UK) Helpline (Number below) and have a chat with another sufferer for help and advice.

Rod

Hi Angie,

From what I've heard, the folks at ouchuk.org (if you haven't already been over there) can help guide you through the NHS for getting O2 and stuff.

Here's a UK O2 info link from that site that mentions the HOOF form: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I'm afraid some of  the info is outdated though, as 7-12 LPM is recommended, but 15-25 LPM is more in the ballpark for most effective relief.

Then there's the D3 regimen I linked to above. Here's some of the latest on that:

"To date based on the available data, the raw efficacy of this regimen is 75% with the margin of  uncertainty at ± 15% due to the 11 CH'ers who reported starting the regimen and staying on it, but who have not reported a favorable response. "

So I'd recommend considering trying it out....um...last week.. :D...but failing that, today could be a good day to start.  :)

hi all as usual thanks for the great advice again  ;D the doc has put me on verapamil and prednisolone for 2 weeks if i am no better after 2 weeks i can have o2  ;D ;Di really need to try this my legs are like pin cushions at the mo  :( have been drinking lots of water this seems to help a little dont know where i would be without all this great advice thanks again guys  ;Ddoes anyone know how soon you can drink etc after a bout has finished i made the mistake before of going to my bros who smokes 2 days after my last lot stopped and they started over again  :odont want to make that mistake again bye for now ;D

evie wrote on Aug 23^rd, 2011 at 3:45pm:

the doc has put me on verapamil and prednisolone for 2 weeks if i am no better after 2 weeks i can have o2

Ask for oxygen now!

The verapamil and prednisolone are preventives but they are not 100% perfect in stopping all CHs, so you need oxygen (and / or another effective abortive like imitrex injections) for when you still get a CH.