Basically wondering if I should abandon efforts of my previous neurologists (which is in line with Dr. Hain and other main dizzy and migraine doctors it seems) and go with new neurologist’s plans which also seem in line but a little outside of the box as well.
My new neurologist is Dr. Ansari the head headache doctor at UCSD neurology and he said my dizziness is not VM since I don’t have vertigo (the room isn’t spinning) but that I’m just dizzy and that I also have migraine and chronic daily headache (as I’m sensitive to light/smells/sound and get headaches daily). He thinks my dizziness is due to something else and is finishing up bloodwork to rule out an auto-immune disorder as I also have other symptoms like:
-polydipsia (along with excessive urination at night; I had a UTI at 28 and the urologist labeled it a random occurrence with no known cause but my neurologist finds that strange)
-tunnel vision (though I realized later that means I can’t see periphery at all so I just messaged my new neurologist to clarify that my periphery is just quite blurry and I see a small area in front of me and prism glasses open that vision up).
My new neurologist is splitting up the 200mg lamictal I normally take into 100mg in AM and PM (which is making me dizzier but I’m able to push through it and just deal) and the plan is to maybe try to increase that to 400mg and extended release or something. He said if my bloodwork (C3-4, IGEand such antibodies) is negative and I’m unable to deal with or respond to the lamictal changes, then we can try (assuming they get approved for me) injection of bilateral occipital nerve or frovatriptan (though he said it’s quite pricey) as I believe he said his clinic has found success with these two things with dizzy patients.
My previous neurologist had me continuing to take Aimovig (as I’ve been on it since June with no changes) while I try Botox as I’ve tried many types of preventatives and Dr. Hain and my previous neurologist see that as a next step. Though Dr. Hain’s chart seems to indicate to try either Botox or CGRP but he also seemed to say that he thinks CGRP does the same as Botox but that it hasn’t been proven.
My new neurologist said to stop both Botox and Aimovig since if Aimovig didn’t work in three months then it won’t work even if combined with Botox and that Botox hasn’t been proven other than a study founded by the Botox company and even if I tried it I would have to try it three times so nine months total so 6 more months for me). I feel bad giving up on botox as I already had a shot of it in mid december and my old neuroligst said to try another one in mid-march and then, three months after that, if there are still no changes then I can give up on Botox and Aimovig. Aimovig is free for me and Botox is only $193 for me but I guess I understand my new neurologist that Aimovig’s not worth the effort since I’ve been on it for 8 months with no results (and to get it out of my system in case I want to try other things), and that Botox hasn’t been proven outside of the one company-sponsored study.
I guess 8 years of neurologists/doctors thinking I had VM hasn’t worked so might as well go with the new neurologist’s ideas (given I believe they also have been proven to work with migraine from what I’ve read). My main problem is dizziness as I can deal with the migraine but the dizziness is just so tiring/annoying. I’ve had dizziness badly since 2011 a couple months after my PhD started, and the dizziness first started a couple months after I started undergrad in 2005 around the time I got a parasite I believe). I also tried SUMATRIPTAN SUCCINATE and IMITREX (6 MG/0.5ML) in 2012 with no results.