my history of what I have been dealing with and when this started-
Mid 2006 I came down with a horrible virus. My throat swelled up and I couldn’t swallow. I was put on antibiotics (cipro), a beta blocker because my heart was racing (propanolol) - I have hyperthyroid so I guess I was at risk for complications with my heart beating so fast. I was also put on something to help with congestion. I ended up going to another doctor because the sore throat would not go away. I was given more antibiotics. Everything got better and life went back to normal.
August 21st, 2006 I went to see the doctor because my periods had stopped for 4 months. I was given birth control to take which I took immediately.
August 22nd, 2006 I woke up to the world spinning. I made it to the bathroom and threw up. I immediately went in to see an ENT who diagnosed me with allergies and blamed it all on some recent exposure to mold in my house. He did send me for testing which showed a little weakness in my ear, but it wasn’t significant. He sent me home will nasonex and some other allergy medicine - also meclizine.
I remember my vision going funny one day while on the meclizine… it was like my depth perception went haywire and I had none… just flat vision. I stopped taking that medicine and continued on. I just kind of dealt with feeling off balanced for a while… the vertigo never came back.
By November 2006 I started getting anxiety and depression pretty bad. Also I was having issues going into grocery stores or just blue light in general (Like when the sun starts to go down and the sky is so blue). I also felt so out of breath all of the time and I felt it must have been a side effect from the propranolol and decided to slowly wean off of it. The anxiety and panic attacks ere getting so bad that at one point I had one that lasted for 2 days. I was left feeling completely disconnected from myself. I felt horrible pressure around my head like a rubber band was around it. The dizziness had been gone for quite some time so I didn’t connect it to anything. I was told that this was just anxiety and I needed to get back on Prozac, which I had taken in the past for anxiety. With in 2 months I was back to feeling like my self again, but still felt a little disconnected. I lived like this for close to two years.
I remember having a really bad migraine in 2008 when I was on vacation in the mountains. I hadn’t had a migraine in a very long time (probably years) I usually only had headaches. Some time after that migraine I started having the same old vision issues. Mainly I noticed it at night with being so sensitive to any blue light, fluorescent light, etc. I had been arguing with my boyfriend during that trip so maybe that provoked it.
Then in Jan of 2009 after a trip to visit my boyfriend in Michigan, I remember seeing these white wispy sparks reflecting off of the snow. I later learned this was called Blue field entopic phenomenon. By the time I had gotten home from that trip, within a couple of weeks after moving in to a new place with my boyfriend (who had just moved back to FL) I had started getting off of my medicine, Prozac, and immediately started noting trails whenever my dog walked past me, or when a car would drive past me in traffic. It was just a dark smear that would follow the object. I figured it was related to my thyroid issue. I found out I was pregnant a few weeks later or so and noticed only slight issues, such as halos were around bright objects. Within two months my mother passed away suddenly and it put me into a state of shock and depression.
Later during my pregnancy, near the end, I started getting anxiety and began having a pressure feeling behind my eyes. A dull ache that would last for hours.
I had my son in December 2009 and in January 2010 I decided to get back on the prozac because I was feeling really depressed. Within a month I was feeling awful again with the blue light, fluorescents and I started getting the rubber band feeling. Then came the headaches. This one in particular lasted two weeks straight. My doctor decided to switch me to zoloft. My headache went away, but then on day 3 of the medicine I started seeing static in my vision, I’ve learned this is called Visual Snow. I immediately stopped the medicine.
Low and behold after stopping the medicine the migraines started. They were every single day and usually began right around mid afternoon and just got worse as the day went on. By the time I got home from work I would have to go straight to bed. I missed close to 2 years of my sons life because of the migraines. The migraines were pure pain. I didn’t feel too off balanced, but I knew my balance wasn’t right when they hit me… if that makes sense.
I made an appointment to see a top rated neuro who specialized in migraines - it took over 6 months to see her. In the end I was sent to someone who trained under her. I was immediately diagnosed with basilar migraine and put on Verapamil. I was on 40 mg tabs 3 times a day. Within 2 months I got my life back. The migraines were rare and usually once or twice a month.
Then it seemed after being on the medicine for close to a year I was getting dizzy when in a vehicle. It was as if I couldn’t determine which way was up and which way was down. I had to keep looking at the horizon. Things started looking like they were bending (The road I mean). Long roads were the worst… they looked like they were leaning forward and my stomach would get that drop feeling. I was sent to see a neurotologist who did caloric testing and others and said I had major loss in both of my ears. I had zero response in one and about 20 in the other. He said it was Bilateral Vestibulopathy, which made no sense to me because I was walking fine and wasn’t dizzy… the only time I was dizzy was in a moving car or like after being on an elevator. I also got super dizzy during the testing and got bad vertigo, which I have read doesn’t happen with bilateral loss of that nature. I was sent for vestibular rehab. I did it twice a week in the office and daily at home. I hated it and it always made me feel worse.I could never really provoke any dizziness, because I wasn’t ever dizzy unless I was in motion. It just didn’t make sense to me. I did however stop taking my verapamil because I hadn’t had any migraines in a while…
The doctor retested me and said my calorics were good and I had increased my numbers… again I had horrible vertigo from the testing.
The day after my last VRT visit I was driving home from work. I remember stopping at a light and noticing the cars passing me looked like they were going 100mph. It was as if everything in my brain had sped up. After it passed (a few seconds) I called my husband to tell him and we laughed about it. I remember I did have a migraine that hit sometime around this same time. Well, a week later I started seeing delayed vision… it was like gaps were missing in my peripheral vision. Objects moving fast looked like frames were missing, or like skipping… choppy vision is how I described it. This has remained and I usually notice it when driving, or walking… anything in my peripheral vision skips and is missing frames. It sucks to say the least.
I started back on my Verapamil, but this time on 40mg’s twice a day. It started helping again with my migraines, but none of the vision stuff.
Through all of 2012 I would every once in a while feel like my brain would shut off for a second… it was like my head would feel like it was falling to the side, real fast, split second. I thought maybe it was from my blood pressure. I ignored it.
September 2013 I started getting dizzy. I went to the ent who said it was probably BPPV as it happened when I was parking my car and looking down at a piece of paper. It did the eply, but nothing happened. Within a couple of months I started getting a rocking sensation. It was always worse around my period and seemed to fluctuate when my hormones would. Eventually this stopped when my periods did. I had two months of relief. Then my periods came back on and so did the dizziness. It’s been with me ever since.
I tried decreasing the verapamil because a doctor online told me it was ototoxic and could be causing the dizziness.
I just recently seen a top specialist for dizziness and he did tons of tests on me including a rotary chair study and a test where I where the same goggles used in the rotary chair test, but they shove my head around. Everything came back normal. He said I have zero inner ear issues and it sounds like migraines and I should look into getting on birth control and it may help. I have been scared to do that… so here I am.
I have been on the migraine diet for a while and actually hadn’t eaten chocolate or sour cream for close to two years until the last two days. I am now paying for it. I am close to being off my monthly cycle and usually by this time I feel great, but I feel off. I feel like I am a second away from spinning (I never get true spinning vertigo… or atleast it’s rare). Sometimes however when I close my eyes it looks like spinning for some reason. Is there anything I can do at this point to help?
I wrote to a doctor at John Hopkins (a neuro who specializes in dizziness) - He said my symptoms sound like Vestibular Migraine. My question is if this is migraine… why hasn’t the verapamil stopped the dizziness?
I am sorry this was such a long post.
I forgot to mention my current symptoms
If I sit on on anything soft such as a soft cusion at a restaurant, a bed, a rocking chair, and if I look at my phone or am reading and there is even the slightest amount of vibration or movement, it makes me feel like my head rushes, or swooshes.
Some nights, not always, but some nights, I feel like I don’t know up from down when it’s dark. I always keep little LED lights in my room so I can see, but I still feel disoriented at times. The same goes for when I lay down in bed and close my eyes… sometimes, most of the times, I feel like my head is floating or my body is floating and I can’t tell where I am in space… if that makes sense.
If I am laying on my side and look at the wall my brain starts thinking I am actually standing and the room is sideways… it’s very strange… it’s like my brain can not make sense of what position I am in.
Some days I feel as if my movements are all exaggerated and my brain is slow to catch up.
Some times when I am walking across the street to take my son to school I will feel like I am leaning too far to one side or like I am just going to fall down… even though it’s not going to happen… I never lose my balance… it just feels like it may happen.
When I take a shower and close my eyes it seems like when my eyes move as my head does it seems like I am going to spin. I know this sounds weird… I think it may have to do with all of the floaters in my eyes and just seeing them move… I am not sure.
My peripheral vision is the worse… If I am sitting in my car and someone walks past it I start feeling like I am moving or about to spin… this lasts only a second. If I watch moving traffic I start feeling the same way. I am very sensitive to watching repetitive motion. I am also now afraid of open fields, or open spaces… it’s so strange. I feel better when I have something to touch or hold on to.
I am 33 by the way and all of this started at 24. I used to work out 5 days a week and was into water sports on the weekends. I was very active and in top shape when this hit me. Now I am lucky to feel fine walking my son to school.
On top of this I have the visual snow symptoms which is a whole other case of fun!
I also have chronic neck pain. I have allydonia too, which I have read is rare… well whats even more rare is I’ve had it since I was a child and attributed it to a head injury I sustained as a child. Not sure though. I also used to get bad stomache aches as a teenager… maybe this was a form of migraine?
I am seeing a neurologist who keeps saying this is more anxiety related for me but I know that it’s more a migraine thing because of the dietary triggers causing the symptoms to be a lot worse. I had to go to a work event where I ate a slice of chocolate cake and a coffee I was done for! I had such a bad migraine by the end of the day and was so dizzy. MSG seems to trigger symptoms for me too. MSG seems sometimes to be secretly in the “natural flavors” ingredient in prepared foods.