I have been in cycle now for 3 weeks. had 5 days PF then they came back. went to see my doctor today. she tried to fob me off by telling me i had a migraine. i went nuts. i was in tears in the surgery because i just wish doctors would take this seriously!! she then gave me a fact sheet on tension headache!! if only it was that i would be a very happy bunny indeed. she also gave me a prescription. for anti depresants!! im not quite there yet. I have felt shadows all day so am now waiting for the beast to explode. thought my brain was being cooked last night. hope and pray its over soon else i might have to cut the right side of my skull off!!!

Can you get a referral to a neuro?  That might be a step in the right direction.  Also has anyone suggested that you stop by OUCH UK?

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If his doctor is suggesting that he has migraines or tension headaches, she most likely isnt' prescribing the anti-d's for his headaches.

debbi.T wrote on Apr 29^th, 2011 at 10:02am:

Maybe it's yer lucky day and you just got a headache.

              Potter

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You wrote, "...in the surgery...". Does this mean you are in GB?

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This sort of issue is why we ask that you identify your location.

Hi,

I know it must be really hard for you to battle with a useless GP while you're getting your headaches, but unfortunately you need them to take you seriously so they will give you the referral you need for diagnosis. Is there someone who could go with you and be more assertive on your behalf? Do you know that you're also allowed to see any GP in your surgery? Of course you might end up seeing someone equally useless, but you might also get someone more understanding.

I would strongly recommend you don't wait another week. Go back first thing Tuesday after the bank hol, insist on being seen as an emergency patient who needs to be taken seriously and get that referral to a neurologist. Do impress on them how much pain you're in and refuse to leave until they help you. All they have to do is write a short referral note for you.

I know it's very expensive, but if you wait for an appointment with a neuro via the NHS it can take up to six months - for the good specialists, 18 months. I don't know whereabouts you are in the UK, but you can get a private appointment with Dr Manjit Matharu at the National Hospital for Neurology, Queen's Square in London for about £250 (it might have even been £200, I can't quite remember now).

Pay privately and you will be seen within a fortnight, max. And this hospital is one of the best in the world - I know because this is the doctor who diagnosed my boyfriend, and they also treat my mum for aggressive multiple sclerosis there and my friend's mum for a brain tumour. If you want excellence, this is it.

From diagnosis, they will give you a letter suggesting 02 and some other drugs. They will discuss the options with you and leave it up to you, with their advice, to decide what to treat your headaches with.

You then take this letter back to your GP and they will give you (with no stupid arguments this time) a prescription for any drugs you choose to take at the dosage recommended by your neuro after consultation, and organise getting the 02 sent out to you. For this, they just have to fill in the HOOF form, fax it to the 02 suppliers and after that (here's the good part) you don't have to deal with your GP any more. It will be just a case of repeat prescriptions or re-ordering your 02 when it runs out directly from the supplier, which is a brilliantly efficient service in our experience. As soon as they receive the form they will deliver 02 to you immediately, and it's a 24/7 service.

The GP referral is needed in order to make the appointment even though it's for a private consultation, so make sure you get it. If you still get no joy, try phoning the National hospital for Neurology (or one closer to you), and ask if they will see you privately without a referral if you explain. You never know your luck! Equally, if you can't afford to go private, once you have the referral, keep phoning for a cancellation appointment on the off-chance.

Good luck, I hope you get diagnosis and treatment soon.

Carolyn

Definitely contact OUCHUK.  They used to have a hotline (I've been away from the board for a while), and I'm sure they still do . . . they understand CH and will help you navigate the NHS system and get you 02 in quick-time.  If Helen is still around, she knows all the shortcuts.

If you want to keep your present doc (who thinks it's migrains), I might consider educating her in a drastic way.  Next appointment, before you go in the office  . . . slam an ale or two or shot of brandy and trigger an attack . . . I'm NOT kidding.  You're having the pain without relief . . . and like all of us, have a fear of the next one.  If she witnesses a real CH attack, she'll recognize it as something much more than a migrain and, hopefully change her attitude and start treating the real problem.  Besides 02 (hi-flow,non-rebreather mask), Imitrex (Imagran in the UK) injectible will stop the attack in minutes . . . . but if you have heart issues or high cholesterol, Imagran and the other sumatriptans can be very dangerous . . . but 02, used properly (and the UK suppliers are well versed in it's use) can offer quick relief if used early-on in the attack.

Hope you get relief soon . .  we do understand your pain.

  Be Safe,   PFDANs

     Richard

Hi Ouch1982

I'm a little late on the reply front, but here goes. Firstly, all the advice you have had so far is great. Also, getting a new doc is a good starting point.
When you see them, make sure you have it all clear in your head, make some notes, in the mean time, if you think you need to. It's essential that you convince this GP to refer you to a Neuro. Do some research as to who's got the best rep, in your area, or as far as you feel is travelable. Then ask for a referal to the best. But also, ask the GP to compare waiting lists. Strike the ballance to get seen by the best possible, in the shortest time. Your next cycle, could come at any point.
Basically, getting onto a preventative regime will be a big help, so the sooner the better. But also, having a responsive treatment ready to hand, for your next bout, will be the difference of you being able to get on with as normal a life as possible.
Hope your PF as long as possible.

Best Wishes
Andrew