So my UCSF neurotologist Dr Sharon recommended I contact Yoon-Hee Cha, MD Associate Professor Department of Neurology University of Minnesota School of Medicine. From her “The “new thing,” is looking for venous compressions in the neck and thoracic outlet. Sometimes they are associated with compressions in the abdomen and they can all work to raise intracranial pressure. They can be triggered by inflammatory processes and are more common in patients with orthopedic issues like scoliosis. The venous compression hypothesis is not one that can be tested everywhere because the entire field is not mature enough, yet. Because of my patient volume, I can’t do a lot of coordination with doctors out of state with imaging protocols that they are not familiar with.” She would do “Quantitative ultrasound venous and a head CT venogram done in 2 head positions” & “a trial injection of anesthetic…Keep diary for 6 hours of injection effect…These are not unusual tests by name but we protocol them a certain way that not all centers will do.” I plan to try this if all else fails and it’s not super expensive as I have family nearby in Milwaukee so I can time it when I visit them yearly.
Another VMer recently told me theirs are under control using 1000 mg daily dose of valacyclovir which their dr says is an antiviral, not an antibiotic and “there is clinical basis that viruses can cause migraine and vertigo. Search ‘migraine valacyclovir’ and / or ‘vertigo valacyclovir’. Vertigo can also be a negative side effect of valacyclovir. But not in my case. My migraines / vertigo were often the result of intense concentration. It took about two weeks for me to really notice that the migraines were gone, as I was prescribed valacyclovir for other reasons. Prior to being prescribed valacyclovir, it was recommended by another doctor, who had migraines similar to mine, that I take a regular aspirin daily. That helped for many years. Because of other blood thinners, that has been reduced to a low dose aspirin. Could be combination of the two. I found some studies that also concluded the valacyclovir and aspirin combination to be beneficial.” I tried valacyclovir for acne years ago but I also had dizziness at the time too and it didn’t help for that (not sure how many I tried; I think only a week or two) but it seems like a stretch. I also don’t think aspirin daily would do anything as even if I take it consistently when sick I don’t notice a VM change and I don’t think taking it for months would be good for me. Dr Rachman Chung my former Functional neurologist /chiropractor who I saw 20 times said for future things I could potentially try Low dose naltrexone, Therapeutic Ketamine, and see a naturopath Mischa Grieder to potentially do antiviral testing to see if I should try an antiviral medicine. Dr. Chung said I still have Downbeat Nistagmus and Right brain deficiency.
My neurologist Dr Michael Flannery at UCSF Headache Center recommended I try TPI/NB first which I tried yesterday and then try again in a month if I can tolerate it which it seems I can. He agrees with the VM diagnosis and categorizes it as Persistent postural-perceptual dizziness and had me to try Vyepti intravenous fusions (failed; first shot 7/25/23 and tried it every 3 months for 9 months). He considered admitting me to Ucsf’s Headache Center but he doesn’t think one of three meds they use would help: Dihydroergotamine(dhe) another triptan (I failed multiple of those), Thorazine (week long, like amlodipine which I failed) & IV depacon which he’s concerned could lead to worse tremors given Depakote & Olanzapine seemed to give me hand tremors.
I am also trying trigger point therapy on my own using this with a theracane Trigger Point Course - Life After Pain Vault which is mostly massaging pressure points and certain exercises similar to what my chiropractor gives me for my scheuermanns disease. I also tried Otolith Labs new device that they claim helps 60% of people with vestibular migraines and I failed that though I wish I was more consistent with it but I used it for a while and I also failed UCSF’s study using VR to treat chronic dizziness (they said they had 75% success rate but that I was the only person who had chronic/constant dizziness).
I also tried kambo on 8/12/23 and twice in September and that helped somewhat with self love and anxiety. I also tried hypnotherapy and had 3 sessions and I think it helped self love, anxiety and my ideation. I did a neurolenses test at Geneva Eye Care and they said I have exophoria with 2.81 distance and 10.18 near away from ideal and the neurolens progressives are intense but help with my vision so I’m sticking with those as opposed to my old prisms.