Options running low

Specific Illnesses & Conditions VM/MAV
1

I feel like my options are running low, and it’s kind of hard to know what road to turn next. 2014 has been an awful year of symptoms, which I haven’t been able to get under control.

I’ve been seeing Dr S since April and to be honest I’m not hugely impressed with his approach. I’ve been on Lyrica since April, up to 600mg and it doesn’t seem to have shifted the symptoms at all. Within that time I’ve also taken Pizotifen and Celexa which he has taken me off, due to not being effective. He has started me on Topirimate 1 month ago and I’ve just made it to 75mg and I still feel the same if not worse. (I took 25mg 2 weeks, then 50mg 2 weeks). He wants to me to go to 100mg.

I genuinely think, I’d probably feel the same without any of these drugs or maybe better. It’s not like I can say, ‘‘Hey, I kind of x% better than I did 6 months ago’’. There is zero change month to month, its a constant same with some ‘‘flares’’

How long do I keep following his advice? I fear I’ll be in the same place this time next year. There just seems to be no ‘‘pace’’ in the process. He doesn’t seem to believe in trialling drugs for a few months, and them moving on. But, we are the ones who have to live, work and try and enjoy our lives.

2

so you’ve been on 4 different drugs within a 6mth period? I think you know your body better than any doctor, and if you feel you’d be the same, or better without the side-effects of medication, then you probably would be. I think the main benefit for me has been mild sedating effect to help with sleep initially, but it seems to be what I’m doing and where I am that impacts headache symptoms. and it’s all trial and error to the doctors anyway. I understand how sick of the whole thing you must be

3

Hi Dizzyrascal, I got MAV almost 3 years ago and am trying to weigh whether I should continue with nori or titrate even further with topamax. I saw you had experience with both and was curious which drug did you end up using? I would be very appreciative for your feedback and to find out how you’re doing - and whether any drug was good for you. A lot of your symptoms sound very similar to mine. Best, Liv