Hi!

I've been diagnosed with CH recently after quite a long wait, really glad to finally know what these unbelievable headaches are - I thought I was going mad.

I'm really just saying hi, but I do have one question! I've been prescribed verapamil which I think is supposed to help prevent attacks? I've also heard of other treatments that help when the pain hits, such as oxygen and sumatriptan injections. So I was just wandering whether you can use treatments like these or others during an attack, or am I just supposed to use verapamil and nothing else? I don't know whether you're allowed to combine the drugs for preventing it and the stuff you use to help the pain when it's there or if you're supposed to use either or.

I'm hoping that makes sense... it sounds a bit confusing.

As horrible as it sounds and I wouldn't wish it on anyone, I'm kind of glad there are other people out there that are going through the same thing. I feel like I can deal with it a little bit better now, glad I found this website!

Thanks!
anniekcw

Hi Annie

Welcome to your new family - the Clusterheads. Sorry you had to find us though.

I personally have never had verapamil, or any preventative but I do believe people use them alongside the abortives such as sumatriptan. Sumatriptan pills take too long to get into your system to be of much help. The nasal spray is better but best is the auto injections. They will abort the worst CH in 5 - 7 minutes. You can only use 2 per day though.

Oxygen is miracle juice. It will also abort in about 10 minutes. And of course it's not a drug so you can use it with anything, and as often as you like. I have 2 tanks at home and save the injections for when I'm out. I never leave home without them.

One thing with the oxygen - you must use it correctly to get results. You must have a flow rate of 15 litres or more per minute and a non rebreather mask. Get either of those things wrong and it won't work. CH is caused by dilated blood vessels, and the high flow oxygen is constricts them again - which is what sumatriptan does.

Check out a post by Batch entitled "123 days pain free". It's a very long read but worth the bother. It's about a vitamin D3 regime which works brilliantly as a preventative for 80% of folks who try it. If you send Batch a personal message he will tell you all you need to know.  He won't mind, he's a great guy and a legend on these boards. No drugs involved, all natural and good for you even without CH. Believe me it's worth it. You can get everything you need on line much cheaper than the shops.

Get on the D3, get some oxygen and some suma's and life will be so much easier. Feel free to come back any time if you have questions or want to chime in, or just to rant if you need to. There is always someone here who understands what you go through.

Tell us a bit more about yourself. Family/supporters and where in the world you live etc.

Hope this helps a bit
Maz.

Hi Maz

Thanks so much for your reply, it's really helpful and it clears a lot up. I was getting myself pretty confused.

I'm gunna hopefully get my hands on all of that to see if it works- it should definitely make a difference, thanks for explaining it all!

I live in the UK in London, and I'm still very young - only 17. So this is all very new to me but I'm glad I've found all this out as I've been experiencing it all from a really young age, it can all get to be a lot! My parents are amazing supporters but they're a bit unsure about everything at the moment, I don't have anyone else that knows about it all so I guess they really are my only supporters. I should let friends and family know soon though.

There's quite a big history of migraines in my family but no one that's experienced CH, I think they'll be supportive! It's getting impossible to deal with all this pain and A-levels at the same time, I haven't been working for weeks now as I get terrible nausea with everything as well. That's probably my biggest worry - I don't see how I can pass my exams at the moment! Trying not to think about it too much though, I'm sure it will work out fine.

Thank you so much for your help!
Annie

You have an excellent support group which I'd encourage you to join--especially since you'll need support and information for a long time.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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When you contact them, ask for guidance about being getting a referral to a headache clinic. Under you health care law, this can be done by-passing your local doctors.

And by-passing sounds wise in the UK! We have had too many of your "landsmen"  complain about the lack of knowledge and kill in treating Cluster. Getting off to a sound start in dealing with Cluster will give you the foundation you'll need.

Print the PDF file, below. This is a list of the more commonly used meds for Cluster.

The standard approach is: 1. a med which will stop attacks within a day or two of starting using it. You take it for 10-days or so, then stopping it; 2. at the same time, starting a med which afford long term protection reducing/stopping attacks, a med which you will take daily.
3. And another quick acting drug which aborts an attack which may not be blocked by #2.

If there is any "blessing" in your family situation it's that they will be able to help you with the emotional  issues of coping with Clusters. It can be difficult but most of us have been successful, when we get good medical care, along with the support of groups like this one--hence, contacting the OUCH group.

Stay in touch....

Hi Bob,

Thank you so much for all the information, I don't know much so this really helps a lot.

I'll definitely ask about by-passing local doctors to a headache clinic, it sounds like the best option and a great start. The PDF is so helpful, I don't know much about the meds yet so thank you for all the info!

I'll contact the OUCH group too - it looks like it gives great support. Thanks so much for all your help!

Annie

Hang in there...