FIRE that neuro.  A good GP would be better....or a vet.

How ignorant not even knowing (or caring would be my guess) that women DO get CH.  Also, indomethacin is not for treating CH.  It's for CPH.

My hubby had a neuro like that for ONE visit.  Blake was so bad and fragile at that time.  This dude was so rude and ignorant about CH.  I fired him and also gave him a 'little' lecture on our way out the door.

As you can tell posts like yours INFURIATE me!!

You deserve better!!

Good luck...

I understand and am sorry your system doesn't allow you to have a choice.

You can learn soooooo much here.  Education is your best defense.  It will help you to help your GP with your treatment.

Good luck.

I still find it amazing. We have the internet, mobile phones.
Yet, still most of the medical profession hav'nt a clue about
CH's, let alone how to treat them.

Hoppy.

Colin wrote,
it was actually great to have a discussion with someone that new about clusters, yet alone a young doctor in training understanding the differences between clusters and migraines.
seems they have ramped up the training on clusters in the curriculum, as my wifes uncle who is a doctor said 40 years ago it got a 10 minute mention.....

Hi Colin,
In some respect, i was lucky to be diagnose at an Oxford
University Hospital, more than 40yrs ago.

Hoppy.

I'm with Jackie... these kinds of posts infuriate me.

I may be a bitch, but I have been known to grab the doctor and CLOSE the door and tell him to sit down and LISTEN to me until I get thru talking. I had one ENT guy who was terrified of me, but he deserved it. We had a good relationship after that for about 20 years until he retired.

I'm sorry about your system, but if you can't get help from the neuro, maybe you need to REPORT his treatment of you (with the facts laid out) and tell the powers that be that you are being abused. Maybe then he'll LEARN that WOMEN do get CH. That is if the powers slap his hands.

Ok, off soap box. Get on the Vit D3 and we'll all keep our fingers crossed that it works for you and that you don't need to see that jerk again. 

Thanks for your concern guys. Barbara - I would have loved to see that.

All things considered I am OK. Since starting the D3 my hits are mild and infrequent, and I do have my injections for emergencies. Whether thats a weird cycle or the effect of the D3 I don't know, but I'm guessing D3. My GP is OK too when I can get to see her. So as for my neuro - guess I don't need him.

I've never used 02 as so far I've been OK with what I've got, but I will not hesitate to ask for it if things get bad again.
Maz.

Linda_Howell wrote on Jan 17^th, 2014 at 6:25pm:


I 200% agree. O2 is life changing. The first time I used it to kill a CH in a few minutes I was in tears knowing what a difference it would make. My supporter was also in tears as she knew what it meant too.

Hi Maz,

that is the problem with socialized medicine.  You lose control of your own health care.  I'm not an expert on the UK's medical system, but I was under the impression you could ask for a different Neuro.  Check with OUCH-UK for guidance.  In the meantime, next time you see your GP take this link along:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; In particular, sections 1.3.26 through 1.3.33  Note the preferred abortive is O2.  However, if you have to have a Neuro's DX you are in trouble.

Jerry

AussieBrian wrote on Jan 17^th, 2014 at 9:45pm:


Or just direct others with CH to them so they can get the benefit of their skills and knowledge.

Callico wrote on Jan 17^th, 2014 at 7:45pm:


It isn't that simple.

Here in NZ we have a public health system which is pretty similar to the one in the UK (which I've also had good experience of).

One huge benefit is the cost of treating CH. I can get 12 sumitriptan injections, plus the autoinjector if I need one, and it costs me US$4 in total. Similar if I need verapamil or any other prescription, it is just US$4.

If our household goes through more than 20 prescriptions in a year then any more are free, so a maximum cost of US$80. For people on low incomes or benefits there are options to make this cheaper.

On Christmas Eve I wanted to see a GP as I'd a problem with dry eyes. I called for an appointment at 9.30am and had the choice of several GPs, included my two preferred ones before noon that day. The appointment cost just US$14.

Whilst the public system isn't perfect, it means that even someone on benefits is not suffering from not being able to get their medication.

If it takes too long to get an appointment with a specialist you can also go private. I've done this a few times to see my neuro, paying about US$200 for an appointment, which can normally be arranged in a couple of weeks or so.

So in many ways we get the best of both worlds.

Mike, I'm not disparaging the benefits socialized medicine can give, but on the other hand I've been trying to help quite a number of people struggling with the same sort of issues Maz has, of being stuck with an ignorant moron who thinks MD means God.  They are stuck and without options.  Perhaps your system in NZ is operated better than in the UK.  I certainly hope so, because I find myself sending the same advice on FB to 3-4 people a week who are stuck in the system, being refused triptan injections because of cost or oxygen, although both of them are the preferred treatments according to the NICE guidelines.

No system is perfect, but I much prefer the freedom to choose my own Dr, rather than being stuck with one, who knowing he has a captive audience has no incentive to educate himself or improve the level of care given.

Jerry

Hi all
I've bumped this thread because there has now been a further development - or should I say extra confusion.

As you may recall from my OP, the neuro said I did not have clusters, and should continue with the indomethicin (for paraxismal hemicrania) because I didn't take it properly first time around.

Well, 48 hours ago the devil decided to pay me a visit. They came at 1pm k6,  8.30pm k8, midnight k8-aborted with injection, 4pm k8, 8.45pm k8- aborted with injection, 5am k6 -caught it early and aborted with imigran tablet, and 9am this morning.  Prior to this I have only had a few random attacks in the last 12 months ranging from k3 - 6, and I attributed the improvement to the D3 regime.

Just as I started to feel better this morning, I got a letter from the neuro which is basically a copy of what has been sent to my GP. He has told her my diagnosis is TAC and I should stay on the indomethicin or lithium. If these have not worked in 4 weeks I should take a caffiene tablet before bed for one week. He also said I should stay on the vitamin preperation. HE DOESN'T EVEN KNOW WHAT IT IS . He didn't give me chance to tell him.

It's quite possible that in 4 weeks my cycle will end any way, but no doubt he will say the indomethicine worked after all. But in my own mind I will know that it could have just been the end of the cycle. There is no way to tell.

Also, I checked out TAC on the internet and it is a generic name for a group of headaches, of which clusters is one. So TAC is not a diagnosis at all. It's a bit like a doctor telling you you have a belly ache but not telling you why.

So the up shot is, I still don't know what I have and will continue on the indomethicin, but have no intention of waiting 4 weeks before I turn to my injections. I'm more confused than ever now. As for the caffiene perhaps I will just start drinking coffee. Don't like it much so don't drink it, but it may be better than adding another pill to my daily concoction.

I must say I'm very dissapointed that the D3 doesn't seem to have worked. My levels are right up there and I thought it was the reason for my apparent improvement. But now I wonder if there was no improvement and I was just having a wierd, mild cycle. I shall keep taking it, if for no other reason than I have just bought vast quantities of it and I want my money's worth.

My neuro seems to think that 4 week trials of different drugs is ok and there is no urgency. We all say we wouldn't wish this condition on our worst enemy, but I do wish one on him - just one - 45minutes of kip 10. Then he may change his definition of urgent.

Rant over. Hope you are all experiencing a better time than me and get some long lasting PF time.
Maz.

Thanks Hoppy

I've never tried that because it says on the enclosed leaflet that it won't work if taken in advance. But I too, have heard of others saying it has helped so I will try it tonight. I sure as hell can't make me feel any worse can it. As for rebounds, I take all these drugs sparingly and will often struggle through a CH if I can, and only take something when I can't stand it any longer. Are the rebound headaches the CH kind, or ordinary headaches that a couple of asprin will take care of?