If I manage to do this next visit shall we all meet for drinks/coffee in London?
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Hey @blueberry0 I thought Effexor was helping can I ask why you are looking got another specialist ?
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Very pertinent question Amy. I think once you have seen a couple of specialists there’s not much point chasing any more unless it’s a question of trying to find one who is actually prepared to see you regularly to fully manage your condition, ie, in the nicest possible way, ‘to hold your hand through it’ so to speak. Neither of the two I saw were prepared to do that. They were just diagnosis, brief confirmatory written letter to your own doctor and Goodbye. Once you have a diagnosis, or even in my case a ‘possible’ diagnosis, and a suggestion of what treatment to try, that’s about as much as One can expect. Certainly here in the UK. Providing of course the diagnosis makes sense to the patient after further reflection. On here we already know, from the Wiki Section and reading consultants comments, that the only way forwards is medication, diet and caffeine restriction together with other trigger avoidance, lifestyle changes, time, and preferably a big dollop of Good Luck. Perhaps many find it hard to accept that until they feel they have exhausted every other possible angle. Helen
PS; Course you did see a few yourself did you. And some of the imminent ones, Prof Luxon wasn’t it, and Dr S? Was that advantageous?
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Hi Amylouise sorry for the late reply.
Yes it helped a lot, I run at 95-100% (the 100% is not that often) but I would like to be the case, I’m still sensitive to light, computer light and since I started working I get more symptoms due to this bad lighting and working.
Anyway as I will not stop till I am 100% I would like to look for a neuro otologist who knows how to treat Visual induced dizziness as I have no other known triggers.
I can’t upper the effexor, every time I try I gets bad so I feel I am a little stuck.
I also have to find someone who would like to consider to fix my convergence insufficiency that I think it’s involved in my symptoms
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I didn’t like Luxon at all. She wanted to stop all my meds to test me again! Test me for what I am not sure as I did all the tests twice and I have no damage to the vestibular system. Dr S is good but doesn’t think outside the box, he sticks to his guns and I don’t think he is an expert on VV. I m the one who suggested effexor at the time. And the next step was adding a 3rd medication that I really don’t want to do
I would think Moorfields Eye Hospital would be your best bet for that one although you do need to be prepared to find some things just cannot be fixed. I’m sure CI can certainly complicate any vestibular disorder. I have several times been told by eye specialists and opticians alike ‘Eyes IS Balance’. I’ve read in several papers a very high incidence of CI occurs in migraineurs. Must be an association.
I can understand that. No MAVer would want to drop off their meds really. However seeing it from her point of view, she couldn’t and shouldn’t base a second opinion on somebody else’s test results. Wouldn’t be an unbiased second opinion then. She would need to start again from scratch. She needed to establish what she thought was wrong with you based on her own findings. Both neuros I saw did that. And of course meds skew the results anyway. Helen
That’s amazing to hear , could I ask what dose your on? The royal national is very good I saw a dr Nandi this May be worth a try as I do think , they think a little more outside the box 
Thanks Helen I think I have seen so many now that I am no longer in search of a magic cure .
I think acceptance is a big part of this tbh and ultimately time is the biggest healer. I did suggest dr Nandi he was by far the nicest doctor I’ve seen, I liked linda too but she was a bit abrubt 
Let’s not get off topic here.
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I’m on 37.5 venlafaxine and 50 mg nort (last one didn’t do much for me I think)
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