I am so lost and confused!

Hi, I have posted on here a while back when I started taking verapamil. I was diagnosed with basilar migraines in 2010 after my son was born. They actually started after trying an antidepressant. I ended up with migraines and visual snow… (Lucky me!)

Anyways I took the verapamil for my daily migraines and they decreased to only a few a month during my cycle. Within a year being on the medicine I started getting some quick dizzy spells. Almost like a jolt that would push my head down for a split second. Then I started noticing when I would drive the road appeared to bend forward like I was going down a slight decline. I stopped the verapamil thinking that was the issue and saw a neurotologist who did a bunch of tests and said I had weakness in both ears and it was bilateral vestibulapathy probably from taking certain types of antibiotics that can damage the inner ears. I was never dizzy 24/7 and just didn’t fit that description. I did the vestibular rehab like he told me even though I always felt worse when doing it and it always flared my migraines. He did more test tug and said it was helping my ears… However… I stopped being able to process movement in my peripheral vision. Moving cars seem to flash or strobe when they drive past (in my peripheral). Or lines in the road will strobe while I drive, etc. I mentioned it to the neuro otologist and he said it was a VOR issue or a type of nystagmus but didn’t check and didn’t give me any advice on it.
I started taking my verapamil again thinking it’s from the migraines or visual snow.

Now a year later I am getting dizzy… Different dizzy. Several months back I had an episode when I was parking my car I looked down at a piece of paper in my car just as it was stopping. It threw me off balance and I had to see the dr who said it was BPPV. He did the eply maneuver and gave me a neck brace to wear for 48hrs. I went back a coupes of days later and he had to do it again. That time it worked and I was balanced again. I had a couple of same episodes every couple of months but the duration to recover was minutes instead of days. Then in mid October after saying night prayers with my son I sat up and was off balance. I went to sleep and since then I have this swaying or rocking feeling. Some days it’s constant, 24/7, but other days it’s not there. I went a whole week without it and then my cycle started and it came back. I notice it notice it more when I am still and less when moving. It was happening a lot in the dark sick as at bed time. Then today in church when the band was playing and light were flashing I was extremely off balance. Yesterday I watched two movies at home and was dizzy by the time the second one was starting. This was day time.

I can not find a rhyme or reason to this. I thought it was BPPV for a while but that doesn’t make sense. Bilateral vestibulopathy would but it’s mainly happening in the dark and still doesn’t fit. Migraine fits, but I am on verapamil and I am not getting daily pain anymore… Anyone experienced this? Any advice?

I am doing a paleo diet and have cut out all of my allergens. If I cut out anymore I wouldn’t have anything else to eat.

This is making my life miserable… Between the skipping peripheral vision and now the dizziness, I hate leaving my house.

I’m sorry, I don’t have an answer, but I just wanted to know if you’ve found any relief. I was cleared of BPPV but have had similar issues. I’m at the end of my wits and had to ask

Look for a good physical therapist in your area specializing in Vertigo. They can help retrain your vestibular system. In the end that vestibular therapy didn’t help me, but my therapist did some research and there are 2 muscles that run down the back of your neck that contribute to both migraine and vertigo. Since she has been working these muscles which she said were all bunched up, my third treatment and I have now been 2 days with no vertigo or migraine. Please give it a try

At one stage as I was going through the option I thought I may have had vestibular migraine but found that an “ordinary” migraine was causing the neurological symptoms.

I have a vestibular migraine that makes me dizzy at all times…sometimes more and sometimes less…but its always there. it started off happening occasionally after i tool a new medication as well (similar to you)…I had a major reaction to it and the world was massively spinning etc…since that date, I’ve been dealing with different levels of dizziness…sometimes so dizzy that i can’t walk.

This book saved me (and I did a ton of research and went to the best doctors and no one really knows what a vestibular migraine is other than this guy and some other guys at Johns Hopkins):

Heal Your Headache: a 1-2-3 Plan by Dr Buchholz

also, read this link

These basically put you on a massive, strict diet and it works.

The only thing i would add that these guys don’t focus as much on is:

  1. sleep is CRITICAL…lots of it and at similar times

  2. exercise…especially in the morning before the day gets crazy (i.e. stress…ie migraine)

  3. relax - migraines come on due to STRESS…that stress can come from eating the wrong foods, staring at a laptop hunched over for hours, emotional (menstrual would be one example)…so avoid STRESS

  4. talk about your problems…it really does help emotionally to discuss your problems…at one point, i was very depressed and anxious due to my dizziness

  5. read the Bible, pray and worship…these are up-lifting things and also relieve stress!

  6. Magnesium supplements really helped me…they help you relax…also, if stress is a problem, then your adrenal glands are over-worked, so supplements to help your adrenal glands i would think would help

overall, it turns out that if you live a relaxed, chill, healthy-eating, exercising diet and don’t get too worked up over problems, your body likes you! I’ve lost 22lbs on my diet and every article of clothing had to be replaced and while i still deal with isolated dizzy spells and am not completely over it, i feel much more in control of my life and my health (bad news is i think you never get “over it”…you stay on the new lifestyle forever…but if your health is as bad as mine was, you will be happy to do whatever it takes)

God bless

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Boy have you been through a lot. It’s tough. I have quite a history myself, with a different diagnosis from each of several doctors, and I have found relief and control from the work done at Johns Hopkins. My suggestions are too long so I hope you get a chance to read my blog because I think it may have good suggestions for you. For me, I had to find the right kind of doctor before I could get the correct diagnosis. I wish you good luck - soon. :woman: www.vertigotalesandtastes.blogspot.com