New Here, Would like some advice on Specialists Please.

If you are diagnosed with ECH, you should be prescribed Oxygen and Sumatriptan injections - this is the recommended treatment and it shouldn't be an issue (unless there are health reasons not to prescribe you these).  It shouldn't require a specialist to access these, from my understanding. 

I'd go back and ask for them and to be referred to a specialist as an extra.

There's lots of good advice (from others) in the "Return of cluster headache" thread, too. 

Hi Dave

Welcome to the forum, just sorry you find yourself having to be here.

Yours is an all too familiar tale, but at least you have now found OUCH. Your treatment regime to date does not appear to have been the greatest, it sounds like you could do with identifying the optimum treatment plan asap.

My advice would be as follows:

Have a good read of the forum as a lot of your questions will have already been addressed.

Give the Helpline a call, their help will be invaluable.

Professor Peter Goadsby would be my recommendation for a consultant. He is based at Kings College Hospital in Denmark Hill. There are other options in London, the Helpline will give you the details.

With regard to treatment, I cannot advise you but I can tell you what I do.

Sumatriptan injections - Sun Pharmaceuticals generic version

High Flow oxygen administered via a Demand Valve. The Demand Valve is available on the NHS in some areas.

Polar powder ice packs.

The 50 mg Sumatriptan tablets do form part of my strategy. HOWEVER, this is only because I am extremely experienced. You should bear in mind they count as 1 of your 2 per 24 hrs. I stuck to the injections and O2 for the first few years. I only started using the tablet option when I completely understood my cycle and how to use the tablets.

Nasal sprays are worthless.

Personally I would avoid Prednisolone.

Any queries you know where to find us *smile*

Sean

I'd echo Sean's regime except

1) I prefer heat rather than cold (eg. microwavable wheat cushion, flannel/hot water).

2) I haven't got round to the Demand Valve.

3) I find the GSK Sumatriptan injections work (Is there an argument that the Sun ones are better?)

I also get some use out of the tablets.  I do get some chest pain with the injections, even within strictly prescribed levels that I have to keep an eye on. 

I'd really stress not waiting for a specialist, though. 

Hi David

Re: Sun Pharma injections

1. They are more user friendly; just point and shoot. No fannying about trying to put medical equipment together at 0015 hrs having just been rudely awoken by the Midnight Red-eye, whilst in pain.
2. They auto-inject. It is clear when the injection is complete. With the GSK ones you have to count. Because you are desperate you are bound to leave the needle in for longer than necessary.
3. They don't sting like the GSK ones do.
4. They are cheaper. A useful thing to know if you have a GP who is whinging about cost.
5. The name Sun makes me think of Bird Island in the Seychelles whilst having an attack *dirol*

Sean *biggrin*

Hi David, from what I have read here last night, that's what I thought... I think the GP is just not up to scratch with information.

I even took a HOOF form with me!! I will be in touch with her again in the morning.

Thanks for quick reply, I will have a look at the thread you mention also.

Hi Mr Git, yes unfortunately the GP that originally told me I had CH retired shortly after! I will give the helpline a call in the morning, thankyou.

I did see a nuerologist 2 years ago, that was after they made me have a biopsy where they cut a bit of artery out of the side of my head! They said they were testing for Giant Cell Arteritis which it wasn't!! The neurologist didn't seem to know much about CH!

The Prednisolone was making me short tempered also, so I'm glad I'm not taking it anymore.

Thankyou very much for the information *smile*

I'd not thought about applying heat or cold! Something else to try.

Thankyou both for info, I will call the helpline in the morning before I speak with the GP.

*yes3*

Dave, this document in the Resources/Downloads part of the website might help you sort out your GP:

https://ouchuk.org/sites/default/files/downloads/new_to_cluster_headach…

Good luck and let us know how you get on.

Val.

Hi Dave

I'm in Harrow NW London. Richard Peatfield at Mount Venon Hosp is quite knowledgable and is happy to tell your GP what is what. I travel to Kings to see Prof Goadsby now. Best Wishes.

Snoopy

good to see you back snoopy

Thankyou Val,  much appreciated *smile*

Hi Snoopy,

Thankyou, that is good to know, I am in Hillingdon so Mount Vernon is just up the road *smile*