The Vestibular Migraine Community
Please read our welcome post and user support wiki!

no official diagnosis, opinions/advice please


#1

I have been having vertigo pretty much daily since Thanksgiving of last year. I was at work when suddenly the room started spinning around me. It didn’t last very long but over the next couple days it increased to being pretty much daily. It was the most severe for the first month but it wasn’t debilitating enough to stop working or anything. After that it changed to more of a rocking/swaying sensation which it pretty much has been all of this year so far with a couple episodes of true rotational vertigo. It is the most noticeable when I’m standing still but other than that doesn’t really seem to correspond with any positional changes. I had all the ENT testing done and that was all fine. I saw a neurologist, who thought maybe I had some demyelinating issue but I had a MRI and a brainstem evoked potential testing done, both of which were normal. The neurologist had me repeat the ENT testing at a different place since he was sure that was it and that was fine. I suggested MAV to him and he didn’t think that was it since I don’t have any other symptoms but I do have a family history of migraines (which I have never gotten). The providers I have seen are at a loss of what could be wrong. I have an appointment in July to see a vestibular therapist to see if that would help or if he would have any ideas. I currently take levothyroxine and bupropion and I thought maybe it was the bupropion since that can have dizziness as a side effect but I have been on that for a long time and I don’t know if you can be on a medication too long and start reacting badly to it. I’m currently being tapered off that medication but I don’t feel like it has made a difference. I’m not sure if I will know until its out of my system. After doing some googling, I came across MDDS as a idea as it explains the rocking/swaying plus the fact that I have no symptoms while driving. The only issue with that is that it doesn’t explain the rotational vertigo and I haven’t been on any trips lately. I just wanted to put all this out there and see if anyone has any ideas or advice. Thanks for reading.


#2

See a neuro-otologist. Even i thought Zoloft which i was on was causing the dizziness and it was not. I have never had migraines before and have a MAV/VM diagnosis. I also have a family history of migraines. I am far from being symptom free but the migraine meds have helped me a lot.

Read the below post and it has a lot of useful info


#3

My original bout of MAV in 2003, I had never had a true migraine with the head pain. Through the initial onset, I did not have true migraine pain…though I did have more constant headaches. I never had rotational vertigo or nystagmus, but I had all the rocking and swaying and walking on a boat up and down, and push-pull symptoms.

I unknowingly had a family history of migraine which we figured out after my diagnosis and when I started talking to other family members.

Best to see a neuro or neuro-otologist who specializes in migraine and/or MAV. Going to VRT might be helpful but if you are still in the depths of MAV it might be counterproductive. During my original bout I changed my diet and tried VRT. Diet helped but VRT did not. This recent relapse, diet change was only minimal help and VRT only exacerbated my symptoms. My neuro-otologist dissuades his patients from going to VRT until their symptoms are better controlled.

HOWEVER, the VRT therapist I worked with was amazing and did almost as much testing as my neuro-otologist. And she spent way more time with me…and resolved two separate episodes of bppv that I had. She also helped to figure out that I had vestibular hypofunction on one side, and that when I have rotational vertigo or nystagmus, lying on my right side helps both settle more quickly. I don’t regret seeing her despite my neuro-oto’s objections. I just wish I had stopped sooner and tried a preventative sooner.


#4

Thanks for the reply (and @GetBetter for the informarion). I was looking back and apparently one of the ENTs I saw was actually a neuro-otologist. Im pretty sure I bought it up with her and she didn’t think it that was it. I guess I will need to find one that specializes in vestibular migraines. May I ask what diet changes helped you? I’m sure it’s different for everyone but I’d be curious to know.


#5

The first time I stopped all caffeine (which for me was chocolate because I had already cut all caffeine due to heartburn issues), stopped all msg containing foods, stopped all citrus, stopped all yogurt, stopped all aged cheese, stopped onions, and stopped nuts.

These were recommended by my neuro-oto at the time. Over the years that I was in remission from the majority of my symptoms, I relaxed on the diet and did fine, with the exception of msg. I never knowingly eat msg. In subsequent years I also went gluten free due to a wheat allergy, but I don’t think that had any affect on my migraines as I have been strictly gluten free since the allergy was discovered.

When I had my relapse, I didn’t realize it was a relapse and I was eating a lot of almonds and aged cheese and kefir…and chocolate was in my diet. As I considered that I was in a relapse (which I didn’t know was a thing with MAV), I stopped eating all those foods and more. I was eating unprocessed foods cooked at home with no sauces or seasoning…and I stuck to very benign foods. Plain proteins, plain rice, plain potatoes and sweet potatoes, plain broccoli and cauliflower. I only drank water. I went four months without a vertigo attack on this diet. Unfortunately, I then had a couple of attacks without changing anything, which was when I went back to the doctor for a preventative.

I only started adding in a few foods in the last two months, so my diet is still pretty limited. The few things I’ve added are not standard migraine trigger foods. I don’t eat out at all and everything I eat is made in my house by my husband or me. I admit that I have gone far beyond what was probably necessary, but I would do almost anything to avoid the vertigo and nystagmus attacks.


#6

Thanks for the info! I feel like I eat everything that could be a potential trigger so I would have to make some pretty drastic changes. It’s hard to tell what makes things worse since I have vertigo pretty much all of the time.


#7

I had vertigo and nystagmus much more often in the beginning of this relapse, when I was eating a lot of the triggers. I went cold turkey on all those foods and more and saw a major reduction in the number and frequency of vertigo and nystagmus attacks. It was clear I was making myself feel worse when eating those foods. But getting rid of those trigger foods did not resolve everything.

You don’t necessarily have to quit all the foods at once. You could try cutting one thing at a time to see if it helps your symptoms. Caffeine is a huge migraine trigger. MSG is a huge trigger and is hidden in lots of processed and restaurant foods. Aged cheeses are a huge migraine trigger. That’s a small set of things you could start with.


#8

I’ve a friend who had a heart attack and when they gave him the diet sheet at the hospital whilst he was awaiting the heart operation he gave it back saying in all innocence, never having been ill before and in hospital ever, ‘yes, that’s all the things I EAT AND LOVE. ‘No, they said that’s all the things you must NEVER eat again’.

The trouble with diets I never know whether they make you live longer or whether they just make it seem longer because they make you SO miserable! Still I guess there are worse side effects and if it does the trick, best not knock it!


#9

It’s definitely a trade off. And fortunately for me the first time this happened I was able to go back to eating almost everything once I was feeling better.

I hope for the same this time! I just keep reminding myself it is a temporary change, not a lifetime sentence.