Hi all,
Just been to see my neuro and as you can tell from my title I was not impressed. Just to give you a little background, I saw him for the first time in Feb last year. He told me he didn't think I had cluster headache because I was a woman, and instead he thought it was paroxismal hemicrania, and gave me indomethicin. My follow up appointment was set for november 9th, but he cancelled it and re-scheduled for today - 11 months after my initial consultation.

So, I arrived and had to wait 45minutes after my appointment time because he was running late. It went like this:

How have you been?    
Well, it seems to have morphed........
Yes, it does. Did the indomethicin work?   
No. I took it........
Well, you couldn't have taken it properly.
I followed the directions........
You can't have cluster head aches - it's too rare in women. It must be TAC. Keep taking the indomethicin. 
But it didn't work.......and loads of women have it..
Well, who knows what they have! Keep trying with the indomethicin.    
Sumatriptan works.......
You can take that if anything sneaks through. [i]
I have lots of shadows...
Not a term I'm familiar with   
I've been taking a vitamin regime[/i]
Well (grin) if you think it works then carry on.   
I've joined a web site. CH.com....
Never heard of it. Try ouch. But don't bother with the forums. They all talk a load of rubbish and you'll be seriously mislead. Ask my receptionist for an appointment a year from now and we'll see what's happened by then. 
[i]well, my symptoms......
[/i]

At this point he opened the door to see me out while I was still in mid sentance He was just plain rude and couldn't get rid of me fast enough. I wanted to tell him about my eye, the effects of flying, heat, beer, and all the other things that have come to light since last february but every time I opened my mouth he just cut me off.  [smiley=furious.gif]   [smiley=furious.gif]  [smiley=furious.gif]       

So it seems I have to treat myself after all. I may just cancell my appointment for next Jan. Thank goodness I have all of you.
                   

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...

Hi Jackie

trouble is here in the UK under our wonderful NHS you don't have any choice. Your GP applies to the neurology department and you get an appointment (eventually) with the only NHS neuro in the county. So you're stuck with him or no one. Unless you can afford to go private, which I can't.

Fortunately, my GP, who admits that she knows nothing about CH, but wants to help me, is very open to ideas and tends to give me whatever I ask for. She's also supporting me with the D3 reg.

I shall probably keep my neuro appointment in a years time just so I don't get thrown off his list, but I'll carry on doing what I'm doing. I'm not pain free by any means but I've had such a vast improvement so far with help from this site, that I must be doing something along the right lines. I love you all.

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.

Ouch, that really was a total waste of time. You'd have been better talking to yourself in the mirror.

At least you've got the forums here as a resource that is light years ahead of where that neuro is. Just pity the poor people who have CH and that neuro is their only resource.

Just because something is rare doesn't mean it can happen. It is like winning the lottery is a very remote chance, much more unlikely that getting CH, but it doesn't mean that someone can't win it.

If only you'd also visited this side of the Tasman Sea when you were down under I'd gladly have taken you to see my neuro. She would have have been just so much more useful for you.

So keep working with your GP and together you'll both learn more. Plus if your GP has any other CH patients then I'm sure that they too will benefit from your GP's education in CH.

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.

I took a young couple out in my boat recently, it was actually called mates day, where we offer our boats to take a disabled person and there carer fishing for a few hours. now it could be anyone of any age, with a physical or mental disability, great day, over 200 disabled with there carers and 180 private boaties giving up their time.
sorry, I had to set the scene.
my allocated disabled person was an amputee with his partner as carer, he suffered a horrible accident and lost an arm, they were both 24 to 25 years old.
turns out she was a 5th year medical student/doctor
whilst fishing she was discussing her job and bought up migrains  and I said to her, I suffer from cluster headaches, do you know what they are, she absolutely not only new about them but started discussing 02 and different preventatives and said that they spent quite a bit of time on neurological issues including all types of headaches.
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.....

colin

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.

hi maz, I had a similar experience with my headaches, doctors seem to have a hard time believing me when I tell them what worked and does not.  Too bad people didn't bleed from clusterheadaches then they would believe!

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.  :-*

I find it funny that he's heard of O.U.C.H. but not Englands reknowned Dr. Peter Goadsby, the headache specialist who has spoken several times at our conventions and would have told this Dr. to go take a flying leap at the moon for his ignorance. 

Goadsby is now practicing in San Fransisco  probably to get away from the embarrassment from colleages like him.

Keep reading up on 02 and the vitamin therapy here.  Angry for you.   >:(

 

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.

Don't wait for someday.  Get it now.

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

Don't wait for someday.  Get it now.

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.

Mike NZ wrote on Jan 17^th, 2014 at 6:52pm:

Linda_Howell wrote on Jan 17th, 2014 at 6:25pm: Don't wait for someday.  Get it now. 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.

I don't know how to add anything to Linda's or Mike's post.

Well maybe, ummm, yes.

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:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; 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

I reckon anyone finding a good headache doctor should either marry them or take their children hostage.

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

I reckon anyone finding a good headache doctor should either marry them or take their children hostage.

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:

that is the problem with socialized medicine.  You lose control of your own health care.

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 wrote,
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.

Hi Mike,
How lucky are you. Here in oz, it costs $67 per visit to see
a doctor, and if you have to see him/her with more than one
ailment, then up it goes. Scripts are min $29 each. If you
are on benifits or pension, then the GP visit is free. But, the
script is $6.40.

Hoppy.

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

Horrible story....This Nerologist treated you as a  customer rather than a patient. He needs to learn some manners too. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I was lucky over the years with Neurologists but that's no doubt because they treated my epilepsy too. One of them onced asked what's new in treating CH.

Where are doctors like this today?

Spend a lot of time reading here. They know what's new!

Charlie

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.

Hi Maz,
Sorry to read your having such a rough time of it. I have
read, some folk find relief by taking a Imigran tab before
going to bed, you just have to be wary of rebound headaches.

Hoppy.

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?

Hi maz,
I still call mine twinges, old habits die hard I guess. For me, it's the exact same pain as a CH, except on a much, much, smaller scale.They some times only last for a minute or two
other times longer.It's also a sign that the beast is still lurking around. You normally get them behind the eye.
But again we are all different, and i expect they effect us
all,in different ways. I've got a feeling he's been playing
around with this message lol.

Hoppy.

Hi Hoppy,
Well I didn't go to bed till 1am and I took an imigran tablet,and slept all night. Woke up at 8.15 with a k6, but it only lasted 15 mins and they are normally 45 mins. So thats a huge improvement.
What you describe as twinges sound like what I have been calling a k3, or a little one, and I have loads of those. I sometimes even get them when I'm not in a proper cycle, and haven't been taking any meds. I had lots when I was away on my recent holiday, but had 3 bigger ones that I had to abort. They were so random though that it wasn't a proper cycle. I think it was all down to the holiday it's self, the heat, flying, jet lag, excercise etc. So, holidays are a trigger for me - bugger!!!
What ever you call them, If the little ones are a consequence of getting rid of the big ones, thats ok with me.

At least when you get hit in company, Maz, you have the decency to do it prettily.

I doubt the same could be said for the likes of me.

Good morning Brian
I'm glad I didn't show myself up too badly. It was only a k6 and I can usually control myself for those. 7 or above and you would have seen the devil in me.
But "pretty" ?  Thats a real stretch of the imagination.

Hi Maz,
That is good news. From what i have read, you can get
up to 5hrs sleep, without the beast paying you a visit.
So i've got my fingers x you can keep getting 7hrs.

Hoppy.

Don't they have some kind of REVIEW board there. I know here the VA "appoints" doctors, but if you get ticked off at them or they don't do their job there is a way of firing them and getting a new one. And you can do that until you get one you can work with.

You might check into that. And if you have a good relationship with your GP you need to tell him/her that this guy was a nut case and didn't know anything about YOU.

But if you don't stand up for yourself - you're gonna suffer. Good luck..  :-*

My doctor has ha d field day with my ch. I was the first he has ever met with these. So after my first appointment he calls me from his personal cell phone saying "so would it be ok if I bought you lunch and you tell me more about these headaches?" We went out for 2 hrs  and after almost a whole notebook full of info to another appointment the next day wanting to induce one for research, at least he's trying to make an effort for our sake! Lol

Torturedminds, that is great!  Not so sure about the induced HA part of it, but I'm glad you have a Dr with an open, inquiring mind!  If we had a few more of those around perhaps we wouldn't have such a bad attitude toward Dr's around here.

I know a few around here have had great experiences with their Dr's, and I absolutely love my Neuro now, but I went through several before him who were worse than useless, and one who definitely should have her license rescinded.

Jerry

I am a 52 year old female who has clusters.  I had migraines beginning at age 7, by the time I was 23-24 I began having clusters.  Yes they say men normally get them but we get them too.  I have run across many doctors who don't have a clue, keep searching and get them to prescribe you oxygen.  I am going through a series during this time, I am so exhausted from the lack of sleep from waking up every hour, tonight I am trying melatonin to try to assist me...keeping my fingers cross for sleep.  Good luck with your search for an understanding doctor.

Bumped again to recap
Fast forward 15 months.
After the neuro cancelled  my appointment 3 times I finally got there today,and I went in full of dread. All the appointments were running almost an hour late again, but eventually I got called in, and it was a different doctor.A woman.

The first thing I said to her was "I have cluster headaches, but doctor ****** says women don't have them, but I know I do". She seemed astonished.

I told her all my symptoms, meds etc. and she agreed instantly that it's CH.  She understood how rediculous the word "headache" is, she understood how frustrating all the irritating silly responses are, She understood the desperation, feeling of hopelessness, and most of all she understood the pain. Hearing the way my cycles happen, and the way I have a single "one off" attack in the middle of remissions, she thinks I have gone chronic. I told her I feel I have it under control with sumatriptan injections and 02.

She told me she often does some teaching and uses you tube videos of people having a CH to make her students understand that this is not a condition than can be lived with. She makes them watch it all and tells them that without treatment suicide is the only option that some sufferers can see.

We talked about all the meds, oxygen, correct mask, body clock,lack of sleep etc - absolutely everything connected with CH.

At last - a doctor who speaks my language !!! I aked if I could be transferred to her list as I don't have any confidence in doctor ****** and SHE SAID YES !!!

As it's under control she has actually discharged me, but said if I need help I can phone her department at any time in the future,  and she will call me back by the end of the day.

I left her office feeling like the weight of the world had been lifted off my shoulders.

Maz,

Great news. Hopefully it will lead to better and better things.

Peter.

Great news Maz that you finally got the confirmed diagnosis from what sounds like to be a really enlightened doctor that isn't just doing good work with patients but is also training the next generation of doctors so that less people will have to go through the kind of experience that you have had to go through with things like "women don't get CH".

Wonderful news!  You actually got a doctor.  Before, you only had an educated idiot with a degree, who cared nothing about his patients.  I love it when I hear someone gets a doctor like this. 

My own Neuro is not a CH expert.  He specializes in muscular issues from MS, etc.  The only reason I have him is because my wife has MS, and he treats her.  Linda asked him if he would prescribe O2 for me, and he agreed.  Since then I've started seeing him, because he sees his purpose being to prevent me from doing something that will harm myself.  He readily admits I know more about CH than does he, and he frequently brings his students in to meet me and learn.  Love the guy!  He frequently will read up on a trial or something to see if he can help.  There's a very good chance he will attend the Clusterbusters convention in Sept in Chicago. 

Again, I'm so glad you actually found one who knows what it means to doctor, even if wimmenz don't get CH!   ;)

Jerry

That's great... I'm doing a happy dance for you. Getting a good neuro is a BIG STEP..

I've been lucky to have a great one for the past 20 or so years.. He always asks, "What's new in clusters?" And he checks our board when he has the time. And he "listens" to any new treatments we come up with (like the Vit. D3).

I wish you PF days and a great relationship with your new neuro.  :-*

wrote on Jan 17^th, 2014 at 2:08am:

I took a young couple out in my boat recently, it was actually called mates day, where we offer our boats to take a disabled person and there carer fishing for a few hours. now it could be anyone of any age, with a physical or mental disability, great day, over 200 disabled with there carers and 180 private boaties giving up their time. sorry, I had to set the scene. my allocated disabled person was an amputee with his partner as carer, he suffered a horrible accident and lost an arm, they were both 24 to 25 years old. turns out she was a 5th year medical student/doctor whilst fishing she was discussing her job and bought up migrains  and I said to her, I suffer from cluster headaches, do you know what they are, she absolutely not only new about them but started discussing 02 and different preventatives and said that they spent quite a bit of time on neurological issues including all types of headaches. 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..... colin

Agree with you 100%, talked recently with a recently graduated doctor and she recognized most of the symptoms and knew it was nothing like migraines, knew about a few cases and how disabling it can be to have CH.

But on the discussion, I really feel for you Maz, that's totally unacceptable treatment. I feel many doctors aren't willing to actually listen to your own research and group all "self-researched" patients into the same group that just goes to google and applies the first page with what they might have.

Then again, doctors are people too and they are all different just like us. Just sucks that you ended up with an idiot