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Treatment advice when GPs don't take you seriously

Hi everyone!

I'm 23 and have been living with migraines since I was 11. I suffered with hemiplegic migraines up until the age of 17, had 2 years without, and then migraines returned (not as severe as hemiplegic ones thank god!!).

The only time i feel I have been taken seriously is when I was younger, with pizotifen not having any effect I saw a neuroligist - however all he did was tell me to not eat cheese (not a trigger for me).

I have been to the doctors for migraines 4 times this year so far, with propranolol administered (this worked for a month and now I get migraines daily/every 2 days). The nurse I saw laughed at me when I asked for a referral, saying 'I don't think you saw a neurologist, that didnt happen' so obviously I have lost all confidence with doctors.

At what point is it possible to get a referral? Migraines affect my life almost daily now, im gaining weight from my tablets, my hair is thinning from them. I feel like I have no options! The severity and number of migraines I am getting now is such a sudden increase, with them feeling like they are heading back to hemoplegic - losing vision, not being able to speak well, numbness.

Any advice is really appreciated. Thankyou!

  1. Hi billie23,

    Thank you for your question and welcome to the discussion forum!

    I'm sorry to hear you are having issues with your medical team - I know how frustrating that can be. Try not to lose faith in doctors, there ARE great ones out there.

    It sounds like now is the time for a referral. Did you ask your doctor directly? If your doctor isn't listening to you, its time to find a new one. As far as I know, nurses aren't able to make those sort of decisions. Working with a doctor who is knowledgeable about migraine disease makes all the difference. As far as a referral goes, I would contact the insurance company and see if a referral is needed - many times one isn't.

    I hope this helps, let me know what you think

    1. Hi Nancy,

      Thanks for your reply. I understand there are great doctors so I totally agree with you on that one!

      I have asked my doctor twice now for a referral. The pain is that it is up to him if I get one or not. I use the NHS so have no medical insurance, meaning basically I have no choice but to go along with what they say. I'm going back again shortly to request one again, so we'll see how that goes.

      If i'm wrong in saying this please do let me know, but as far as i'm aware I can't see a specialist until I am referred! If anything just to rule out anything serious would be nice, I've been recommended for a brain scan before but it got stopped early in its tracks so never happened.

      Thanks again

      1. Hi Billie.
        I was in this.same situation.on my last Neuro visitwhicj I was asking for a year, he said I'm doing well with managing my migraine till I ended in the hospital.
        I know that might not be an option for everyone but I don't have private insurance eather but I've asked my GP to write referral letter and I went for a private consultation which cost me £270. The best spended money. I've diagnosed he suggested new medication ( I was on Topamax for 5 years but unfortunately stopped working ) and he wrote a letter to my GP woth suggestion for the future NHS treatment.
        Now I'm waiting for referal to migraine clinic for another treatment.
        If you can I would 100% suggest to see Neurologist and if you can afford or save money. This is what I did.
        I've been prescribed Pizotifen. I'm scared of the side effects bit there is other option if this doesn't work.
        I have also excluded all dairy from my diet cos it was causing migraines. Not on only cheese.
        Hope things will get better soon! All the best
        I wish you all the best.

    2. Hi Billie, I'm really sorry this is happening to you. There are definitely great doctors/health care professionals out there... and then there are others who aren't very well educated about migraine. I am not familiar with NHS, so others will have to speak to that. Is this GP the oly option?

      One thing I have learned is you really need a doctor who is an expert in headaches beyond "don' eat cheese." I would second the advice to save up and try to get to an expert even if you have to pay privately. Incidentally, have you identified any triggers? There's a great comprehensive list of foods on this site if you think foods get you, and people are often triggered by stress, weather, light, sound, smell, hormonal changes, etc. If your doctor orders a scan to rule out a greater problem, that's good. But more than that, I would be advocating for a referral to a headache specialist. Keep a detailed headache diary. Pain levels. Any medication taken. Be able to show evidence. Be persistent.

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