Are you happy with the migraine advic... - National Migraine...
Are you happy with the migraine advice and treatment you have received from your GP?
Charlotte_NMCPartnerNational Migraine Centre297 VotersPlease select one:
I find it frustrating that many doctors Only want to dismiss you with a prescription for drugs to mask the synptoms. Many doctors donot support any complimentary, natural medicine or try to find the underlying cause of our migraines.
Only think that's helped has actually be accupuncture. I want to go back again but just don't have the money right now (took a yr of saving to manage it).
THey had me one 26 meds a day, mostly for pain and migraine, and I just got seriously ill. They kinda agree acupuncture helps but won't try to help me get it on the nhs (I know it's possible as my mate gets it on the nhs). :/
I struggled along seeing my GP but in truth I new more about the condition what was available if I hadn't gone to the national Mirgane clinic I would have waited months to see a NHS specialist , my GP was unable to help she even said at one point" I don't know what more drugs I can give you". It's not there fault there just not enough training out there for them .
Imagine how it is in the US, where some still can't get "Health Insurance" (that's always sounded like Racketeering to me, I dunno . . .). Obamacare has helped many, but our trusted democrats in the US Congress all have Golden Plans (that we pay for) and can't relate to us working stiffs; they just say, "Oh, those people can always go to Community Health Clinics.", forgetting entirely that they and their Republican friends (who take over in January, heaven forfend) have defunded most of the Clinics that relied on Federal Funds . . . but I digress: yes, docs are under so much pressure, they hardly have time to be home with their families, much less read articles and do research to learn about new diagnostic ideas and tools. I work for Neurologists (ironic, no?) and they are very excited about new Alzheimer's research but they're so overworked and undervalued by the system . . .
This is exactly why I suggested this poll. I've been back and forth to GPs for 10 or so years being given various drugs but I really would like to know what's going on! I've asked to be referred multiple times but they just say "a neurologist would probably give you the same drugs". I'd like to hear it from the neurologist in that case.
The latest suggestion was acupuncture, which I'm willing to try but can't really afford....and that was only after the doc google the NICE guidelines (which by my interpretation say I should have been referred already...)
Maybe GPs need to see this poll....
/rant
The issue is that there are very few if any migraine specialists within the NHS to refer you to. If you have migraine and nothing more sinister, a neurologist referral will not necessarily help you as the majority no little more than a GP. There are very few neurologists with an interest in headache - our medical director is one of the few in the country that is.
I think it is important to remember that GPs cannot be expected to be all round experts in every condition, as they come across so many different problems. We believe that 90% of headache care should be dealt with in primary care, but there needs to be the funding to train GPs to make this a reality.
Hi Rebecca, does specialist at NMC support alternative therapies as well as drugs for migraine prevention?
I agree with Rebecca - migraine could be dealt with really well in primary care but only if there were adequate resources. This doesn't just mean a good prescribing budget for a range of medications, but access to things like acupuncture and botox for people who could benefit from it, in their local health centres.
There are guidelines about which medications to try and I can see the reasoning behind this. But I think one of the reasons patients get frustrated is that in order to get to a point where you might find a medication or treatment that works for you, it could mean several trips to the GP, and a long process trying something and possibly feeling the same or worse on it, and then having to keep repeating this. No wonder people give up - I have.
Perhaps more could be done to promote websites and information such as this one when someone is diagnosed, because for me, reading up on migraine and getting in contact with other sufferers has helped me to be informed and manage things for myself a lot better, and my GP visits have reduced.
I get the best care from the gp in the practise who suffers from migraine-- the others are pretty offhand about these "just headaches"
I've found most GPs I've seen aren't aware of all the preventative options. One GP I saw was ignorant about chronic daily headache. He suggested I take pain killers on full dose everyday for a week or two 'to blast' the persistent daily headache I had out of my system. What would be ideal is access to local headaches clinic where you know that the people you see have good knowledge about migraines. In my experience even seeing a neurologist consultant doesn't help if they are not a headache/migraine specialist. The National Migraine Centre is brilliant but not all of us can get there. A telephone or skype consultation service offered by the NMC would be great.
I gave up with my local surgery after working my way around every GP and just being told 'Try beta blockers' after deciding that my Sumatriptan use was becoming too heavy and was causing endless rebound migraines and side effects (stomach pains, breathing difficulties). No-one would look into any (non-drug) preventative treatment, or refer me to a clinic; one just dismissed me with a very sharp "Well what do you think THEY'LL do that we can't?". I've now given up with my GP and am now doing all my own research and seeing a nutritionist. To be fair, I think GPs simply don't have the time to do the kind of research that's needed with something this complex.
Based on the numbers we can clearly see the treatment prescribed by doctor is inadequate.
Instead we get the best advice from others in the same boat who have researched and tried different treatments.
My primary care doctor a DO, listened to every suggestion I came in with; I did have to be my own advocate, my faith in neurologists over the years is not overwhelming. My Primary Care Dr would listen to me and hand in hand we learned about Topamax when it started being used for migraines, Botox I did find a neurologist to provide the injections and relay all of my findings back to my Primary Dr. I am pleased with our relationship because they listen and there have been times when their research taught me something (oxygen for a cluster migraine).
I was lucky enough to find a Dr that listened & was very proactive in my migraine treatment. I was at my wits end with pain when I got referred to her & she really did save me. Together we looked at solutions & found ways to help me. I am now on Botox because of her perseverance so hoping for good results. We did the acupuncture (which is amazing), feverfew & all the herbal things as well.
The first GP I saw after a head injury and concussion kept telling me that the severe unilateral headaches I was getting would just get better and to avoid things that made them worse. After changing GP in the surgery and visiting NMC I was diagnosed with post traumatic headache migraine phenotype and have been using propranolol as a prophylactic since last July to reduce frequency and intensity of attack. Quality of life is better now but my job which I loved is medically monitored and migraines disqualify me from doing it. Two things I've learned is grab the initiative if you can and be proactive about helping yourself because not all GP's are on the ball with migraines and two, quality of life is key...treat your migraines as best you can and really enjoy life between attacks and when one does hit try to stay positive, ride it out and don't give up to it.
ps if you're debating whether or not to visit the NMC, then don't. Go and see them, they helped change my life.
Received no advice, symptoms ignored and not even recorded. Saw a headache specialist who dischragred me for being too unwell to attend second appointment (even though I told Drs how unwell I was, and was being rendered blind from severe migraines, not sure how i could crawl onto public transport and find my way there in that condition).
Was given meds that made me seriously ill (hallucinations and nervous system issues since) and no follow up. Grr
I'm generally happy with my migraine treatment I use to have migraines daily I would end up in the er almost daily for the infamous migraine cocktail. Until finally my new pain manager got me approved for the botox injections for migraines I've been to the er maybe 5 times in the last year for the cocktail. And use my at home prescription migraine meds rarely. But since being diagnosed with lupus I've noticed more frequent migraines abd bad headaches
I suffered with migraines and severe headaches for years and years, the GP just chucked pain killers at me, BIG boxes of the damn things when I was in my 20's. None of them worked very well.
It wasn't until I had a very severe migraine that lasted 7 days and my Fiance took me to A&E that things started moving forward.
After the A&E staff tried to get rid of my pain with a cocktail of medication with no success, I was referred to a Neurologist (Dr Al Din) and the rest is history.
After trying more than 3 medications with no real relief, I'm now being given botox every 13 weeks and it's changed my life!
Thank you A&E.
x Nic
The doctors at my GP surgery seem to know very little about migraine and the different treatments available. Given the high percentage of the population that suffers from migraine improvements are needed to their training.
I agree !
I am not allowed anything stronger than Panadol which does nothing
I was happy with my GP, she referred me to a neurologist and that was great. Then a few years later when I started getting flashing lights daily, she sent me for a second brain MRI. Both those things have been so helpful in knowing what i have is migraine and to stop panicking about brain tumours.
However it feels to me that the current NHS is going downhill and GPs are now so restricted and have to get referrals approved etc. A friend has recommended the clinic at UCLH, apparently the best, but I doubt my GP would even consider it, I'm having some treatment for another issue, and almost feel like I need to wait for a bit before asking for more support with migraines.
I agree with what youre saying here. My doctor suggested 2 private migraine clinics to me on my last visit to her last week. Her suggestion was to go look into them i.e. to go pay for private medical help. This was in a conversation which amounted to "Oh too bad the pain wont go away? Not much i can do for you!" Surely this is shocking.
I have had migraine for the last 2 weeks and head feel like it going to exposed and i have taking everything i could take for it and noting has help. What should i do someone help please.
U have fibromialgia arthritis n migraine but am allergic to a lot prescription meds so been on 50mg amatrip n 500 naproxin but now he wants me on fluroxtine says more affective for all symptoms
The doctor seems to think its my teeth and jaw, I wear a gauze for bedtime and dentist says all is fine.
Doctor says nothing else can be done.
I've suffered from migraines pretty much all my life but these have been manageable until they've suddenly increased from 3 or 4 a year to 13 so far since the 5th January. Off I toddled to the GP hoping for an answer as to why the dramatic increase to be told that there's not much can be done. All I can get is a head scan and that was with pushing the issue, I suggested a neurologist and was told they don't investigate migraines as they're far too common.
Don't Quite and Very, mean the same thing? ?
By the time I joined my GP practice I had already been diagnosed with hemiplegic migraines. She dared not interfere with what 6+ Consultant Professors had decided. I tell her what I want her to do and she has to do it if she wants to keep her job and keep me alive
I live in the US and the neurologyst does not care about the cause, he prescribed me many drugs and that's it. They don't care about side efects, when I told my primary care and then the neurologyst about the triptans side effects on my, both of them said that triptans are very "safe" so in other words they did not believe me 😡.
My GP sighed and asked me 'what do you mean when you say you get migraines? Most people just *think* they have a migraine'. I explained I experience loss of vision, nausea, strong reaction to smells, colours, extreme pain on one side, tingling fingers, loss of coherent speech. To which he said that sounded like a migraine, I should keep an eye on it. I was so frustrated with the experience that I didn't go back. As it has been getting increasingly worse I now have an appointment with another GP and hope I can get some advice on what to do other than stay home in a darkened room and take paramol/cocodamol. I have so many questions... Why do I always feel SO HUNGRY with migraines? and nauseous at the same time??
Have you had any luck with your doctors since this ohsofierce ? I feel the same.
The other doctor just gave me triptans but I read the leaflet in the box and it doesn't match my symptoms whatsoever and didn't feel like the gp had really listened or cared. The leaflet even specifically said not to take of you experience loss of vision with your migraines... So I gave up on the gp. I now function on a combo of magnesium supplements (suggested by my sister who is a doctor) and low carb diet (sugar dips were a serious trigger for me) and contraception. Not happy with that last option but what's a young woman with migraines otherwise supposed to do? It helps so I out up with it for now.
Magnesium and q10 kept my migraines at bay for nearly a year but they did creep back in. Try q10 along with your magnesium.
Moderation team