Doing all the leg work

Anybody else find that they are constantly having to do there own research on there condition? Every doctor Ive been to I feel as though it’s me who has the knowledge and I’m guiding them through the process. Ive noticed spelling mistakes in many of my letters that have been sent to me and general errors on drugs that are used etc. For once I would like them to be able to know what is going on and give me clear instructions instead of me informing them and having to chase around after them to up the doseages or perscribe a new med. I’m a nurse by profession and still feel as though I’m at work trying to co-ordinate my own care. I can understand why nurses have a reputation for being bossy now!! Although I’m not a bossy person and very quiet by nature. Just wondering if everybody else is having the same experiences. I think more people need to be educated on migraine and how to treat it. I think there is a general lack of interest in migraine patients. Hopefully people will become more educated on this condition in time.

Yes…I have found we must do all the researching, etc and guide them to what I want to try next. I had my neuro even say he does not necessarily believe in MSG as a trigger- I was floored, but he is the best headache specialist I have found. You have to fight for yourself when we are the ones ill. Just try and keep fighting…

Mine always gives me too high of doses of meds. I basically go on my own tilt ration. (alot of info i have gotten from this site–thank goodness) ; and usually i do not even tell him becuz he does not, for the most part, get it and there is no real point arguing when I just cannot do the dose he wants me to. He knows I am med sensitive, but still gives me the starting doses that a regular person would start out at----so frustrating.

I agree with you guys I bet some doctors don’t even realise there are migraine specilaists out there to be accessed. I had to put in a complaint which I hated doing and have never done before in order to be seen properly by a neuro and finally get on a migraine med.
My doctor starts me on a low dose but then doesn’t give me any advice as to when to increase the dose or what dose I should be aiming for or even discusses the side effects. Luckily this site is here so I have been able to find out a lot of info on here. It is really frustrating- I guess it’s just a case of educating people as they come across us and like you say not giving up and keep fighting. I think persistance is the key!