Maria, You are in a pickle, aren't you? Well, you've landed in the right spot. Please allow me to welcome you, even though I'd rather you not need to be here.
There is a TON of information right here....just look to the buttons on your left.  My first  suggestion is to read,read,read........educating yourself is like putting on your armour.
CH and CPH are 2 different animals. I think you need a definitive DX.
I don't want to give you any wrong information, but I believe CPH can be managed by Indo. CH is a different beast altogether-and with this groups help, that, too is manageable! First off, although the pain is debilitating and unbearable, CH will NOT kill you! Remember that! Aside from that, there are things you can do to manage the beast's visits-02 is the primary abortive. There are also preventatives, verapamil being probably the most commonly used, which will help to keep the beast at bay. All of this can be discussed when you have a DX.
Meanwhile, there ARE people on your side of the pond you can meet and talk with. They'll be online soon.  Of course, those of us in the US will be here online to help whenever needed.
Please ask questions. We'll be gentle.
Most of all, please try not to be scared.
Wishing you PF,
Cathi

Hi Maria, I am new too. I do not take the meds so I cannot help you there. Others here can help with that. Saying Hello and hope you can pf soon.

Cassie :)

Welcome...and I hear you...the early days can be a whisker scary. Getting the final diagnosis is really critical. CPH if I remember correctly from others who have posted, will respond to the indo....CH will not! If it turns out you have CH, the good news is it's not the end of the world. You'll want to read the oxygen info link on the left of the board, complete with color pictures showing you how to get set up. Oxygen has been enjoying tremendous success for many on the board.

Many other meds and treatments we can suggest to you to discuss with your doc, but first we need a solid diagnosis. Like I said earlier, the toughest part of the road, getting that solid diagnosis. :-/

And yeah....I promise no one here will tell you to stop whining...it's just a headache. ;) Welcome, hope we can help you out.

Joe

Maria,

I'm new to the wonderful world of CH also. My neurologist put me on prednisone and verapamil, which didn't work, so now he has me trying the indometacin for a few weeks, like you are doing. It's only been 5 days, but I can tell it isn't helping, either. As was pointed out, though, the indometacin is for CPH, which is different from CH.

I don't know about CPH, but CH's can be dealt with. I only signed up here a few days ago, but this board and the info pages are a godsend! Just looking around and discovering that you are not alone with CH is a help.

Hoping you become PF,

Paul

Take a Pill and lay down, Its probably just too much caffeine, It cant be that bad, Dont worry too much about it, you'll bring a headache on.

There you go, Advice ;D

Ever felt like asking them how many hours a day they sit whining/crying trying to squeeze their heads off??

These things are bad, real bad. But as said...they are not deadly.  Though in the middle of one we sometimes wish they were.  They will steal your sleep and your sanity. They will make you feel scared and alone.

But you are not alone. Sleep is overrated and sane people are boring.  This is not stronger than you, and it wont win.

Im sorry you had to come, but glad you found this group that has helped me with all their knowledge and experience

David

Get in touch with your most excellent support group. That will give you local support/knowledge on using you health care system as well as treatment.

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Quote:

Ever felt like asking them how many hours a day they sit whining/crying trying to squeeze their heads off??

LOL! When I saw that the ch.com store had CH wristbands, I immediately thought, "Can I stretch it to go over my head and around my neck, so I can twist it until my head pops off during the next ch attack?"

[quote author=5B767B46537671776A7677190 link=1240603548/8#8 date=1240656777]Get in touch with your most excellent support group. That will give you local support/knowledge on using you health care system as well as treatment.

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why not give the ouch uk helpline a call, the number is 01646 651 979, don't be put off by the answer phone, just leave a message and contact no (landline pref) and someone will get back to you

sandra xx

quick question, how many attacks do you have throughout the day, and on average how long do they last for???

sandra xx

I am new to this too and I can tell you to remain calm and not be scared. The pain is there but at least its temporary, its not causing any long term damage.  When it gets really bad, try to think that its the worst its going to get, and theres nothing to worry about it. Just have to ride it out. I know its difficult to get to this mental attitude but its crucial.  Accept it, and deal with it. Worrying and being scared just makes it much worse. I wish you the best of luck

Hi Maria,
I am a fellow Brit from down south, Sorry that you are here, but pleased that you have found a place where you can get some real help and advice.
Already others have suggested 02  I can vouch for it, my CH’s  are very naughty and don’t respond to any of the drug treatments, 02  is my salvation. If you have any problems with your GP’s understanding of this condition please ask them to contact The National Hospital for Neurology & Neurosurgery Queens Square London. 0207 837 3611. Ask for  Dr Anish Bahras clinic . She will instruct your GP about CH and 02  Therapy.
Also ask your GP to refer you to her clinic and arrange an appointment for you. I know it will be a long (and expensive) trip for you but it will be worth it. They have been dealing with CH for many years and can offer a full range of treatments and therapy. Professor Peter Goadsby is the worlds leading expert on CH and is based there. You cannot be in better hands. `If you are experiencing a cluster bout you will be seen very quickly, as the Doctors need to observe as many attacks as possible to advance research into our condition, by doing so you will help us all to find a cure.
We are all here for you.
Mike

Dr.mike wrote on May 1^st, 2009 at 3:11pm:

Hi Maria, I am a fellow Brit from down south, Sorry that you are here, but pleased that you have found a place where you can get some real help and advice. Already others have suggested 02  I can vouch for it, my CH’s  are very naughty and don’t respond to any of the drug treatments, 02  is my salvation. If you have any problems with your GP’s understanding of this condition please ask them to contact The National Hospital for Neurology & Neurosurgery Queens Square London. 0207 837 3611. Ask for  Dr Anish Bahras clinic . She will instruct your GP about CH and 02  Therapy. Also ask your GP to refer you to her clinic and arrange an appointment for you. I know it will be a long (and expensive) trip for you but it will be worth it. They have been dealing with CH for many years and can offer a full range of treatments and therapy. Professor Peter Goadsby is the worlds leading expert on CH and is based there. You cannot be in better hands. `If you are experiencing a cluster bout you will be seen very quickly, as the Doctors need to observe as many attacks as possible to advance research into our condition, by doing so you will help us all to find a cure. We are all here for you. Mike

hi Maria, glad u phoned the  helpline, Andy's wonderful( though i'm biased, i am married to him lol ::))

with regards to Queen Square, Prof Goadsby now spends a lot of his time in America, so if you are thinking of a referral there it is Dr Manjit Matharu  you should be referred to,also, you may have to wait  a few months for an appt as his clinics are pretty busy!! not trying to put you off, just rather you knew what to expect!! although there may be a good neuro nearer where you live, you could see!!

i know there is a decent guy in North Staffs hospital called Brendan Davies, not sure if that is anywhere nearer for you???

Sandra xx