Refusal to Refer: Migraines and Possible Tumours???

I have been suffering from 15+ migraines a month for the last six months. I suffer from aura, intense photophobia, paralysis as well as weakness and affected speech, dizziness and confusion. I am 24 years old and have spent two months on amitryptiline which has done very little in alleviating symptoms. I also take carbamazepine for cyclothymia. I have recently, after being promised I would be referred to a neurologist, now been given a new prescription of propanolol which has given me numerous side effects including diarrhea, insomnia and wheeziness in the chest. I have also suffered from a loss of appetites. I am still having at least three migraines a week. My main worry is the refusal of my doctors to refer me to a neurologist and a lack of their wanting to search for further underlying problems for my migraines. They are debilitating and last for a minimum of two days.

My main question on the forum is that - does it make sense that my doctor is still refusing to refer me to a neurologist and opting instead for giving me more medication at higher doses? I am really worried at the moment about the idea of a really serious problem with my brain like a brain tumour because I still haven't seen a consultant or had an MRI scan.

Migraines are usually a rule out diagnosis and so it is important that you see a neuro and have some tests run to rule out any other conditions. Does your insurance require a referral? First your doc said yes to neuro but now has changed his/her mind? Do they say why? Unfortunately we have to be our own advocates and push, push, push for what we need. Please keep us posted!

Welcome to the forum You will find tons of support here.

I agree in that you have to be your own advocate, at the end of the day your input needs to be heard- you are the patient afterall.

It could be that you do not need a referral. I suggest checking with your insurance for covered neurologists, and researching the ones who specialize in migraine. The next step would be to call their office and try to set up a new patient appointment. At that point in time you can find out if that particular office requires a referral. This method is just what has been working for me, some specialists do, some don't, or your insurance might even be the one to require a prior authorization.

At any rate you have some calling around to do.

In regard to your question, I have had the same happen to me, and maybe it was because they didn't take me seriously because I am only 23... who knows!. I finally did some pushing and got a scan and saw a neuro. None of that would have happened if I didn't push for it. I received some good advice on here a while back regarding healthcare and migraines and to sum it up... if you aren't happy with the care, it is probably time to move on.

If you are unhappy with how your doctor is managing your care and refusing to refer to a neurologist there is also the possibility of finding a new GP.

Good Luck.

Hey @Jewishmother and @BabySeal- thank you for your timely and helpful replies. I feel so much better at being able to talk to other people who know what I'm going through. Unfortunately, I'm in the UK and because I'm an NHS patient, the attitude here seems to be 'do as little' as possible until things are really serious. My doc kept saying (for three months) that we needed to try some possible treatments to migraine e.g. amitryptiline otherwise we would be bounced back by the neurologists. However, I was promised that when I returned at the end of April I'd be referred. My new doctor (the old one has left) did a rudimentary visual test (can you see this and that) last week and then basically ruled out any other underlying conditions and started me back on the medication pinwheel.

I will go back this week and demand a referral to see a neurologist and I will also look up self-referral as well. If possible I will try and go private because I really do need the peace of mind that my brain isn't like this for another serious reason. Thank you for your support, it has been a real help. And I'll deff keep posted as well on how it goes.

You really should have an MRI to rule out tumors. It's very unlikely, but always a slight possibility. If your PCP is being good at trying various medications as preventatives, you might as well keep trying with him. I went through two of the top migraine nuerologists in my city and they honestly did no better, and pretty much gave up. It's just medical roulette until something magically works.

I'm currently doing better with my regular physician who at least has more sympathy (he's had migraines before himself, so he knows what it is like). He's been far better at trying new things and getting me prescriptions for pain relief.

So, sorry to report I don't think there are a lot of nueros who have anything special to provide. If your current doctor is not trying anything, or runs out if options, then by all means demand a referral. But if he is active in working with you and responsive to problems and keeps trying to find a solution, I'd stick with him.

I feel for you with the NHS. I remember when I lived in England having a sore knee for weeks after an accident, and when I went to the doctor, she said, without even touching it, "It's not swollen so it's not broken". Errr, right then, so it couldn't be anything else apart from a break? I privately found a physio and she was able to diagnose and fix the problem within months.

Anyway, keep pushing for the MRI. I agree with everyone else that it's good to rule out tumors or other causes. Can you change doctors within the same surgery if you don't feel that this new one is doing the right thing?

I've never had an MRI and I have had chronic daily migraines for 12 years. I have however had a CT scan. I went to the emergency section at the hospital a year ago. I was told because my neurological exam (touching nose, walking a straight line etc) was good that I did not need another CT scan. (it was several years ago) Hope this helps.

I am also in UK, and I had no trouble getting a referal to a neurologist. I have been refered to the best hospital as well, so I am still very pleased with my neurologist who is helpful and patient.
Mind you I have been with a different GP at the time of the initial referal, andt I am still with the same neurologist several years later.

I have also had two MRI done in the same hopsital, over the past few years both were fine, but this was just to eliminate possibility of any other causes for my headaches.

I am sorry you are having such difficulties with referal to neurologist.
It is entirely up to your GP to refer you, and nothing to do with NHS.
But some more conseravtive doctors like to play power games, and they feel they know it all better then any specialist making our life difficult.
My current GP is like that, so I am thinking fo changing him soon (for different reasons).

In your situation I have two suggestions for you:

1/ You know that by law, you have a right to change your GP anytime you want without giving any reason (it can be in the same practice, or to different practice) so this might be worth considering.
There is not reason why you should be suffering so many unwanted side effects, when the medicines are obviously not working for you, and the Dr is not keeping his/her promises.

2/If you need any further help, or advice about your rights, or how to go about changing your GP you might contact your local PALS who are there to help and advise the patient to deal with such problems (or, to lodge any complaints).

Your GP surgery receptionist should have PALS telephone number.
I have used them for advice on several occasions and mostly they were very helpful, with rare excpetions. If you cannot find PALS number, you can call your local CAB they will have their number.

Good luck, and do not let any arrogant GP mess you about, you deserve better.

Hello friends,

I'm just posting to update you on how I've been faring since my initial post. Well, I went back to the docs as my lovely friends on the forum suggested but before I could even get the chance I started having palpitations and chest pain which meant I ended up in A and E with a suspected infection and after all these invasive tests - needles, blood tests, blood gas levels from an artery which realllly hurt and an x-ray they sent me home. I was still in a lot of chest pain for which they said there was nothing they could do. When I finally saw a new doctor, he was much more understanding of the seriousness of my condition. He put me on pzitofen which has done absolutely nothing for my headaches at all but has resulted in me having a sudden, overwhelming and ravenous appetite and getting fatter every day. And I'm still having up to 5 migraines a week. A week! So, I'm back to see the doc on Monday. In the hope that he will finally give me the appointment with a consultant neurologist that I so desperately need.

Will keep you posted.

Elleah

hi elleah, see my p.m as i think it will help you enormously to get help in the u.k!!!xx