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100 different meds - don't give up

Six more? Really? Now I am intrigued. I’ve thought about Venlafaxine. Got a packet in the cupboard. But then again I’ve thought about how good it would have been never to have gotten MAV in the first place and that ain’t gonna happen either any time soon. Helen

Em, Try Cefaly it is pricy but Erik swears by it. That might be my next stop. Money back guarantee is good as well.

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4 posts were split to a new topic: MAV - an inflammatory condition?

Yes please Em, try Cefaly.

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You guys worry after me more than my family does. Of course I lie to them. That said, I’ve had a good run lately. 10 days of maybe 85-90%.

I love you, too. :sparkling_heart:

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The New Face Doctor is now pursuing the last consultant I saw over 2 years back to see uf she can extract any further drug recommendations from her on my behalf. I was amazed even at her volunteering to try. Out West there seems to be an albeit subconscious cartel of neurologists who all share the same hymn sheet of drugs for MAV. It will be interesting to see if she makes any headway. Helen

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I’ve got one of those scheduled for next week. This should be interesting for both of us.

Oooooh! I’ll be interested to see if my New Face Temp Doctor, the “well you are stuffed one” gets stuffed when she tries connecting with the neuro. Um. Helen

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Two weeks down the line and as I had to make contact on another matter I asked the New Face if she’s Received a reply from my consultant. Turns out she has ‘forgotten’ to write the letter. Or so she said. No other doctor has ever offered to contact the neurologist before so I was gobsmacked when she did. In fact so gobsmacked she had to offer to do so twice. Now I suspect she’s changed her mind. She doesn’t know this but I’ll give me 2 weeks. If she’s not got back to me by then, I’ll be chasing her up, again. Helen

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Well the New Face obviously hit a brick wall. Totally unannounced a letter confirming an appointment early next month with said neurologist arrived by post yesterday including her recently revised price list! Reading between the lines it seems the neuro wants to get her hands on my cash before she comments. No free info from that one! It seems my doctor has now become my secretary arranging appointments I could have done myself a month back. So much for doctors working their way through long lists of medication for MAV with patients. Where I am they stick rigidly to the book. They don’t want the responsibility. Helen

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Sorry, Helen. :confused:

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I’d expected as much. New Face is big :rooster::rooster::rooster::rooster::rooster:. They all are. New Faces arrive at my surgery full of enthusiasm. I suspect the same swipe card they use for security clearance getting into the surgery is programmed to swipe clean any enthusiasm or initiative on 3rd? Swipe maybe? So it’s off to see the neuro who will most probably offer me Sodium Valproate, yet again which I shall decline like I did last time and the time before. And the roundabout just keeps on turning. Helen

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And yet another perspective. Dr Silver’s presentation here, very long and detailed, but much like the SIGN Guidelines (Scottish equivalent of NICE) states really only two preventatives worth using: Propranolol and Topiramate? Slides 68/69 onwards …

Guess the truth lies somewhere inbetween but interesting all the same.

Just those two drugs I’ve already failed huh? :confused:

I was rather amazed. After that acupuncture was recommended though having then checked out the Grampian NHS list other drugs are obviously used! Gets to be a crazier world every day.

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I think I’ll take the lists in the appendix (pages 90-something) to my neuro-endocrinologist and just keep working my way down.

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Sounds like a systematic methodical approach to me. Helen

The neurologist I saw recently for a second time seems very much to tow the party line. She seems most in favour of Topiramate, then Sodium Valproate, Amitriptyline then Propranolol. When asked specifically about Venlafaxine, she doesn’t prescribe it because she said it doesn’t stop migraine. Interestingly she said Vitamin B2 and Coenyzme Q10 are the only nutraceuticals for which proven evidence of success exists. She did say there are lots of other drugs people do use and it’s very much a question of individual preference people needing to feel comfortable with what they are taking. I didn’t Show her the list or anything. Wouldn’t have dreamed of doing that. I long ago reached the conclusion UK consultants are much like souffles. If they aren’t handled with extreme caution the whole thing tends to fall flat. Helen

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I’m feeling luckier all the time to have found a doctor willing to listen, learn and experiment with me.

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Never mind. I got fobbed off again. Labs looked good. Which means nothing. But, there wasn’t any low hanging fruit.

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