finding someone who is willing to stick to treating me

Over the past few years I have found that my experience of experts is that they start making positive noises, then tell me to take the same meds that were discounted by a previous practitioner because of really horrible side effects. When I say that there was a problem they seem cross and before long I am reffered somewhere else. Some of the meds they want me to take made it so I had pins and needles so bad I couldn't feel my feet or hands and struggled to move around safely. I am now reffered to London for CBT when a local CBT practitioner won't even see me because he said it wouldnt help. I don't know what to do anymore. I no longer have the money to pay for things myself so am reliant on the NHS, and it seems to me that my problems are so insignificant compared to urgent ilness that I am just seen as a nuisance or a dissapointment because I don't respond to the quick fix solution.

How on earth do I get around this?

It's because we live in England and the NHS doesnt work for us.
It can work, it does work, but it isn't doing it for us is it?
My experience is the same as yours, and I now just feel like a nuisance and something of an idiot
I find myself apologising because meds dont work, or I have to stop them, or the biggest sin of all...I wont take them.

If people "paid" for the NHS service in many areas they wouldnt accept it.......but we do pay for it.
My husband has always said we could have had such better health care from his national insurance than we get....
Too many people clogging up the system. Too many managers, too many targets.

I think, its because our illness is invisible. Its about targets and statistics. Too much bureaucracy involved.
What happened to duty of care. I get the same with Fibro and my daughter and I both have IBS and get treated exactly the same.

In the eyes of the public, you have a headache, take an aspirin. Your stomach is upset, take Kaolin or imodium

Not much kudos or targets met in sorting out headaches.....although the truth is far from that, we are an increasing problem running alongside back problems....also invisible....

Lot of brownie points sorting cancer (no disrespect so nobody jump please)
How fast did they find a vaccine for swine flu....
The buzz in neurology now is Alzeimers..... migraine doesn't kill (not much it doesn't)

Bottom line is we are not important. Especially in UK
We need to galvanize ourselves and shout and scream and make ourselves important.
I dont know how, but I truly believe its the only way.
And I DO BELIEVE they could treat us properly and I DO BELIEVE they could find a cure....

Teri Roberts said, funding not there. Well if its not there in America, sure as Hell isn't here.
And I am speaking mainly about England guys. It is different. really it is. You wait and see....

Stepping down off soapbox now..

Hi Di

I know what you mean, some drs are more experimental than others. Do you get seen at the National? I have tried some unusual things through them, but they are running short on ideas (mostly different combinations or drugs that are very similar to things I've had before). Maybe ask about clinical trials you might be eligible for???

Otherwise I have tried a lot of non-medical approaches. Currently Chi Gung / Qigong is really helping me. There's a meditation aspect and also it works with energy lines in a similar way to accupuncture. I am a bit of a sceptic on the reasoning behind it, but the fact is is really is doing something to help so I'm sticking with it. The Alexander Technique is sort of similar without the Eastern philosophies, but is based on releasing tense muscles and improving posture (no meditation though). I tried this a few years ago and it helped a tiny bit but with much slower progress than Chi Gung for a tiny amount of the benefit.

At the moment I'm pregnant so can't (won't!) take any medication unless absolutely neccesary. So I'm relying on omega 3 supplements and Chi Gung, and so far it's pretty good. The migraines are more painful than usual when they're bad, but I have had far fewer hemiplegic migraines. And my average daily pain is down slightly the past few weeks.

If your dr hasn't got any ideas I'd come up with a list of things you haven't tried (you'll probably get some ideas on here) and ask your dr about them. They might not want to try some of them but it could give some extra options. More unusual preventaive options include ACE inhibitors (eg lisinopril) or Angiotensin II inhibitors (eg candesartan), methysergide, pregabalin, lamotrigine, zonisimide, flunarizine... there are many! I'm not saying any of these would be suitable for you as I have no idea of your medical history, and a lot of these have more side effects and less evidence that they work in migraine, but just might give you something to ask about.

Take care

Amy

Pen, I totally disagree that the NHS is all that different to the US on balance. And the NHS has far fewer inequalities than I see from the States. Obviously no system is ever going to be perfect for everyone and there is always room for improvement whatever system you have, but I think your view of what is possible (a cure) and how medicine is researched and practised is just not compatible with how medical opinions are actually formulated and researched and what is possible (in our lifetime). Not to mention that drs ect are mere humans with different opinions and ideas. There will always be differences, even between two Drs in the same practice. But that doesn't make either of them wrong (or right), nor that the grass is greener just because it is different. I'll step off my soap box now too

Gotta say I'm with you there Amy, and who can blame the docs for scratching their heads when we're such a mixed bag!? Previous thread on the forum with 2 people ditching Zomig for it's horrendous side effects, when it's the only thing that's ever cut through my humdingers! Migraine is hard to get to grips with for us, for our families and friends, and thus for Doctors. Where do they even start with our bunch of triggers and contraindications and symptoms? I don't envy them (but do wish they'd get something done!!)
LHx

Ok guys we will have to agree to disagree.

Amy I know you are much much younger than me and have much more understanding of medication and things medical than me. But I have been struggling with illnesses that have reduced my life quality horribly for longer than you have been alive.
So its not our lifetime I am so concerned about its mine...there isnt much of it left. Hopefully they might find an answer in yours.
I used to get help. Now I don't. Right from GPs outwards. When are people sick, weekends and evenings...and the surgeries are closed. How is that an improvement.....And getting to see the good doctors is becoming more difficult.

Part of the problem is the NHS having too many echelons of management etc and stupid stupid rules and bits of paper which paralizes the system. However I didnt mention any comparison with the USA. I dont think anyone gets a good deal where migraine is concerned. I do think more could be done, and yes we do have a wide variety of symptoms which does make it a minefield. However almost all of us have some quite strong crossover symptoms. I am told this is how they isolated Parkinsons which is also very varied in its symptoms (I imagine most diseases are the same). Of course none of this is any good without sufficient funding. I was told this is the main problem. Money for research.

Liz I dont think its up to the doctors to unravel this enigma,that's what research is for. I dont doubt most of them are doing the best with what they have, and given they get about 15 minutes studying migraine as students, thats not much....
But I stand by what I said, and I do have two very good medic friends. I didnt make this up, they talk about these things. We also have two nurses in the family, one of whom works in rheumatology....she isnt surprised I get nowhere with the Fibro.

I am sorry if I am sounding critical of doctors. I just dont think they truly understand our plight. When you meet one who does its a whole different ballgame. They are out there. And they are as frustrated as we are at the system.

Neither am I on some sort of hate campaign against the NHS. In some areas they have served me and my family well. But it is getting worse not better. .Not all their fault, but regardless, it doesnt serve anyone. A good family friend is a "district" nurse. She is on maternity leave. She is so disaffected with the NHS she is not sure she will go back...sad because she is very good. As she said why should we make excuses for the NHS. Its not an individual and we are paying for it. Its odd we are so defensive of it even when it fails us....thats not how improvements are made.

Regardless, we do all have our opinions and they are formed from experience. I am glad Amy that yours has been more positive than mine. Perhaps age has soured me. With a nasty birthday in March, I wouldnt be surprised.

Pen,
I don't think that migraine sufferers in Europe are better/worse treated than in the US or other countries.
On this board there are Canadians, US citizens, Europeans, in the past we have had some Australians and a New Zealand guy for a while. We all say the same things, live the same experience and received the same answers.
All over the world, migraine is still a mystery and the weapons to be used are more or less the same.

I'm often accused to be cyincal, but I think that migraine is not underevaluated by science. I think instead that it's overevaluated because we are a HUGE business for pharmaceutical companies. Think if all migraine sufferers would be cured...No more triptans at 10 $ each, no more OTC taken as drops, no more guinea pigs who take tons of drugs hoping to feel better.

Sorry if I sound like a CIA agent, but I have the suspect that also more important diseases like cancer are not voulantary defeated because there's a too huge business around them.
What would it happen if a patient with cancer could be cured only through a cycle of pills to be taken at home? No more chemo to produce, no more radio therapy machines to manufacture, no more hospices to deal with so many terminal patients.....

I know, I'm cynical and too suspectful, but - as Pen says - I cannot believe that it took only a few years for science to find a way to keep at bay a scary thing like AIDS and instead decades of research - that receives billions of donations - has not find a cure for cancer.
Like I can't believe that we have cloned a sheep but still don't know why and how migraine spoils the life of millions....

Bye

Ivy, good point.
My husband and I were discussing the drug companies after he read the posts.
They are really raking it in on drugs. They have just made another fortune on the swine flu drug tamiflu. UK is now giving away....vaccines they cant use etc. I dont know how it breaks down. To be honest it depresses me to even know about it...
Our country is on its financial knees and whatever the fiasco and who caused it, I dont want to go there....we taxpayers are now in even more debt, and who wins again...not the people, the drug barrons...

When I first had Imigran it was £22 a tablet and on the NHS I was allowed 3.
Boy was I grateful for that, because we couldnt have afforded that kind of money.
Thankfully there are many more now and the patent on Migard ended.
Now they are about £4 each I think. But as you say if we were cured.....not even that...

As I said in my other post, I dont think any of us get a good deal regardless of where we live.
And you might just have nailed the culprit...

Amy thankyou for giving me some ideas I can take back to my doctor, it is really appreciated to have someone around that has some ideas that are on the not tried yet catagory. I think if you don't mind I will print out the ideas ant take them with me.

Congrats on the pregnancy, hope the migraines are not too bad without the meds, you are very brave.



On the finding someone wiling to keep on trying front, I wondered if it was something to do with the way I present myself. I always put my best foot forward, try to be organised etc, dress smart. I wonder if they think I'm exagerating or something sometimes, or are not convinced by my feedback about the meds, as if they don't believe that I've given things a good try when I know I have.

Di

Di,

I think its a dilema. Dammed if you do....
I have been at the docs and been quite stoic and held it all together so that I can make a good account of myself.
Not be a babbling pain riddled anxious fool.
Seems they decide Im not that bad.....

I have burst into tears, and the worst time was when a GP turned to my husband and said.
"All I am seeing here is a lot of anxiety".

I have gone in alone and wished I had someone to turn to to back me up.
I have taken him with me, and then find I still do all the talking and he says nothing.....

I dont know how to play it. I am apparently articulate (so they told me when I did a lot of radio stuff), but does that help or hinder?

Lets ask Amy, she has a good perspective on these things.
We need all the help we can get.....

Hmmm, it's a very good question. How is the best way to present yourself??? To be honest I'm not sure. I wouldn't put on a big 'act' of any sort or try too hard to come across in a certain way. I'm trying to think what I do. I think I am just me!

For a typical appointment I would prepare well for it (what I want to get out of it etc), usually have a written list of questions and points to raise. I report back on the results of trying what was suggested last appointment, give a summary of how I've been since the appointment, then go through any other things I want to bring up (obviously the dr does their bit too, I don't monopolise the whole appointment!). I guess I try to be time efficient and concise to get as much out of the appointment as possible.

Some days I can burst into tears at an appointment, but I try not to if I can help it. If I'm having a 'good' day and so seem more upbeat I'll mention that this is a good day and not typical. I've usually taken some codeine to get me there in the first place and I mention this and the fact that I very rarely take it otherwise, so it will give a slightly false impression of how bad it is.

I think this would make a good thread in itself, so think I will start one as I'm also interested in how we all deal with this dilema.

Take care

Amy

I expect it was the mood I was in, but my response to the first post on here did seem a little controversial I suppose.
So for anyone that wants to bother to read it. This article was fresh in my mind and probably spurred me on....

http://www.dailymail.co.uk/debate/article-1248369/For-40-years-I-looked-patients-round-clock--I-loved-minute-So-GPs-today.html

DONT read it if you are sick of the subject...but it might explain a bit where I was coming from.

I think really there are a few issues tied up in this thread.
1 bearing in mind how busy with other things the people who treat us are, how do we get them to stck with it and work with us? which is what I think I was trying tosay.

2 bearing in mind how many suffer with migraine should we have more dedicated people to treat us? Dedicated as in not having a million and one other clinics to also run. Which is a good one for NICE to think about considering the number who can't work as a result, but this is something beyond our control.

3 the issue of how you present yourself bearing in mind that at the back of our minds is that if we get it wrong we will probably be sent back to our local doc to deal with us without much instruction.

4 I'm not saying that anyone doesn't want to treat me, but I do tend to go to someone then after a short while I'm off somewhere else after spending only a short time actually in a room with them face to face. I then spend months not Knowing what is going to happen, waiting for someone to tell me what to do after the first idea they came up with has gone wrong.

I think I'm starting to ramble so will stop but hope this makes sense.
Di

I think by the sound of things I don't overdo things one way or the other at apointments. i keep notes too with me, especially of questions I want to ask. Perhaps I've just not been lucky yet.

Di