Vertigo

This is a long story but it was a long journey to get rid of my dizziness. My vertigo started suddenly and became more and more frequent over 8 months. It was totally unpredictable. After a referral from my GP, I consulted a local PT who specializes in "dizziness." When I called, she asked me: "When you get dizzy, do you move or does the room move." I move, to which she answered I did not have BPPV and she couldn't help. (Turns out she was right.) I went to 8 different doctors and had many MRI's, sonograms and scans, all of which informed me what it wasn't. It wasn't my heart, it wasn't my ears, it wasn't a blockage in my brain or arteries, and it wasn't my spine (per se). It WAS my central nervous system, and I finally fount an ENT who diagnosed me with cervical vestibular migraine. The vertigo was coming from overactivity in my upper cervical spine, which directly affects the brain. (The migraine part is misleading. I don't have headaches, I have dizziness (vestibular) and occasional neck pain.) The condition usually arises from a trauma to the neck, maybe something you didn't even register. In my case, I had a cervical fusion 10 years ago. Anyway, the ENT has this same condition himself. The fix was a tiny dose of amitriptyline (elavil) and a combination of riboflavin, magnesium glycinate and COQ10. (These supplements and dosages are so well known they make gummies called headache or migraine supplements) The initial dose of amitriptyline helped the frequency and duration but I was still getting periodic vertigo. He upped the dose (but it's still tiny--I have to cut the lowest size pill). He also gave me a script for cervical physical therapy. The vertigo has disappeared even before I started the therapy. The cervical PT in my case is manually manipulating the soft tissue around the skull and in the neck muscles, as well as postural exercises. Some of the postural exercises are as simple as pulling your shoulder blades together and down and chin tucks. It progresses from there. I have told many people this story and some of them have gotten relief just from the supplements. My GP told me that this condition is notoriously difficult to diagnose by other than a specialist. I found my doctor by doing a web search for doctors who treat dizziness or vertigo in my geographic zone. It's worth a try for those of you who have not been helped by other treatments.

I have vestibular migraines diagnosis from Mayo. I have the vertigo but also get migraines sometimes too. I have peripheral neuropathy and one mainstream doctor thought I maybe had fibro. I was put on duloxtine and was on Gabapentin. I started having side effects from Gabapentin when mainstream doctors kept upping it(2800) so went off it and there was a call back on duloxtine so the wean me off that. Problem is the never put me on anything else so have to deal with all the symptoms. I also have unresponsive celiac disease, DH rash, psoriasis and psoriasic arthritis. Now have symptoms of other autommune diseases (lupus ect). I think it's time to go back to Mayo!!

@lindasrk11 Congratulations! Great summary, helped a lot.
Glad you’re feeling better. Long journey with a happy ending.

@dmmeyers62 that is a very large dose of gabapentin. No wonder you had side effects. I hope you didn't stop it all at once. I started at a low dose and they increased it until the burning pain went away. I think the max was 1800 mg. ( A few months after that my daughter started referring to my "gabapentin ADD" attacks. That dose did have a noticeable effect my attention and forgetfulness.) I stayed on that high dose for a couple of years and then weaned down with the same protocol they used to increase it. But I did it VERY slowly. I didn't ask a doctor, I just did it. (I did the same thing with statins--i just went off them and waiting for the labs. When they started creeping up I went to red yeast rice.) Even when I was getting break-through pain, I kept the gabapentin reduction schedule. Mostly because of intervening events, it took me 6 years to get down to where I am now. I was going to drop it again when I got the sciatica followed by the lumbar surgery followed by the vertigo. Geez, that's a mouthful. But every doctor and surgeon told me to wait. So I'm waiting. Did you just stop all at once? Gabapentin acts like a nerve block for me--it only works locally on my neuropathic nerve pain. I've gone through other (additional) neurological pain but it didn't dent that pain (I'm thinking my sciatica two years ago.) You have some autoimmune conditions that may interfere with gabapentin. But you definitely need to address at least one or two of those conditions because you are in sensory overload. Each condition multiplies the others. The problem is that most doctors want to treat the condition but not the pain associated with it. Physical therapists too sometimes. Yes, it's time for Mayo. There are so many alternative medications that could provide relief, but you need a comprehensive evaluation that will take all your conditions into account.

@lindasrk11 They took me slowly off the Gabapentin and also duloxtine. The duloxtine was very hard to wean off of. I changed doctor's and they were the ones who took off these medications.