I am now fully diagnosed  'Severe chonic cluster headache, Chronic migraine and co-morbid restless legs syndrome'.

Yesterday my consultant injected a 'nerve blocker' into the back of my head to try to deal with the migaines I suffer.  Unfortunately I forgot to ask how long before it works.  I was woken at 5am with a really severe one.  Is this normal?  I expected an immediate relief.  Before the treatment I had a really annoying back headache which, miraculously disappeared soon after the treatment! 

Initially I am also to be prescribed oxygen with sumitriptan injections to cope with the severe CH attacks and if all else fails Verapamil.

It appears I am going to be kept busy this summer.... (Yeh, we do get one in England you skeptics.) ....most annoying because we had to cut our last break short due to a worsening in my condition.  :'(

"Initially I am also to be prescribed oxygen with sumitriptan injections to cope with the severe CH attacks and if all else fails Verapamil."

Oxygen and sumitripans are abortives. Did you get a prescription for a NON-rebreather mask and a high demand regulator that will deliver at least 15lpm and 25lpm would be even better.
Verapamil is a preventative med very commonly used for CH. Did your doctor say why he/ she wanted to wait on the prescription for verapamil? Verapamil is usually prescribed with Prednisone. Prednisone is a steroid taken in about a week long taper, high dose to low dose. It will knock down the CH's quickly. Verapamil is started at the same time as the Prednisone. It takes about a week to build up in your system and be useful.
Welcome to the board.

Hi Bob
Thanks for your reply. 
Since this mornings attack I have had no back headache so, fingers crossed, I might have a bit of a break.  I have looked at other postings on the GONB (nerve block) and there appears to be mixed reactions, it'll be good to be headache free for a while as some have experince of.
I am worried about the oxygen eg size of tanks/equipment etc.  My consultant Dr Siver is arranging it.  The problem is we don't have a car to transport it when visiting distant relatives or staying on our narrowboat.  We are toally reliant on public tansport.  How does this work? Am I going to have to give up holidays and visiting family approximately 300+miles away? The narrowboat is 2 hours away by train. Will they allow me to take oxygen on a train/bus/ boat???

So many questions no time during consultant appointment. [smiley=confused2.gif]

Verapamil was only mentioned at the end of my appointment so not really any explanation of how and what with.

Thanks again Bob.

Quote:

Initially I am also to be prescribed oxygen with sumitriptan injections to cope with the severe CH attacks and if all else fails Verapamil.

This bit confuses me too. The oxygen and sumitriptan are great for when you get a CH so you can abort it but the verapamil is a good preventive that will stop many of the CHs happening in the first place. An aborted CH means some pain which isn't as good as a prevented one with zero pain. I'd strongly suggest you ask about going onto verapamil with a prednisione taper and not wait for the "...if all else fails...".

As for your question about oxygen, you've actually a few options.

Instead of taking your oxygen with you, see if you can get your oxygen company to deliver the oxygen to where you're going to stay, be if family / friend or even the narrowboat?

I'm not sure about the rules in the UK for moving oxygen cylinders around but you are likely to be able to take them with you, other than if you fly. Not having car transport makes it harder to take anything other than a small cylinder which can fit into a backpack which won't abort too many CHs.

The other option is to not use oxygen when you're away from home and to instead just use your sumitriptan injections which are a lot easier to transport.

Advice/reactions, etc. can become confused when we are talking about health care systems in different countries. So, please:
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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You have the right to be referred to a headache clinic, by-passing local medical sources. Given the number of complaints from the UK about the lack of knowledge/skill of local doctors, you may wish to consider whether making a change would be useful. If you wish to explore--contact your excellent support group for guidance.

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I'm also puzzled by having both oxygen and Imitrex. Besides the problems of  travel, while O2 is effective, its duration of effect is brief compared to other abortives. Traveling with the Imitrex injection resolves the problem and I don't grasp why the doc advises having two abortives, in any case.

Verapamil is simply the most widely used preventive; safe, effective, pill form. Suggest you press the doc on why you are not using it now. Prevention is the goal, not always having to use an abortive. (Print the PDF file, below, both to educate yourself and as a MEDICAL "tool" to guide discussions with the doc.)

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Bob Johnson wrote on May 2^nd, 2014 at 4:49am:

I'm also puzzled by having both oxygen and Imitrex. Besides the problems of  travel, while O2 is effective, its duration of effect is brief compared to other abortives. Traveling with the Imitrex injection resolves the problem and I don't grasp why the doc advises having two abortives, in any case.

Puzzled? Shoot, I travel with three different abortives: O2, Imitrex and migranal. I start with O2 and Monster. If that doesn't work, I go to either Imitrex or migranal depending on what I need: quick but short term relief (Imitrex) or a good night's sleep without getting up every 2 hours (Migranal). I don't know about the OP's CHs but remember some of us are chronic and nearly intractable. I'll take all the help I can get. My life and my outlook have improved dramatically knowing my arsenal is bigger than it used to be. And more effective.

As for the original question concerning ONBs and things getting worse, I asked my doc the same question after my first ONB. For a week it was pretty bad and then "it" kicked in and I had about 9 months of relief. Same with my second ONB (so far). blessings. lance

Hi kelt5
I don't know how you would get on with the narrowboat, or public transport. But my oxygen is delivered by a company called DOLBY VIVISOL and they will deliver to any address in the UK if I give them about 3 weeks notice, which is great for visiting relatives.