I have suffered with unrelenting, chronic dizziness for well over two years. Yesterday was the actual 2nd anniversary of my getting on to first, short-term disability, then long-term, and now SSDI. And I only really got a diagnosis of MAV last Wednesday.
Being new to this board, I am hoping that I can get confirmation that my symptoms are truly those of MAV so I can stop wondering what is wrong with me. The thing is, even my neurologist says that MAV dizziness isn’t unrelenting usually. So that is where I get confused and think it is not MAV.
He says there is a cervical-related component to my dizzness as well, but I have read that even cervical pain can be part of the whole migraine syndrome. I also have been diagnosed with CFIDS, fibromyalgia (under control with Cymbalta), orthostatic hypotension (but just a 10 pt drop on tilt table test), IBS (which he says can also be triggered by migraine syndrome) and multiple chemical sensitivities.
For a long time, I was convinced that this was from klonopin withdrawal. I was on .25 for three years and I believe that it really messed up my nervous system. But now, it’s been over two years since I titrated off it and I’m worse then ever.
I use a scale of 1-10 to describe the intensity of the dizziness on any given day.
I have head every test, including all the vng and inner ear tests, mri’s and CT scans of brain and sinueses, etc. All, thankfully ok. Slight vng irregularity on left, but the ENT said not even clinically enough.
So, here are my symptoms and I would love feedback:
- Unrelenting feeling of dizziness. Rarely the room spinning. More like something is swirling in my head, behind my eyes. Like being sea-sick, but I’m not on a boat. Severe brain fog with it and can’t find words sometimes. Best it’s been in over two years is a “3”. I also have a lot of neck pain on the right side with some issues in C5. And usually right-sided migraines, which can last for five days.
- My typical cluster when something makes it worse is:
A. Head starts feeling full
B. Palpitations come on and make my body feel weak and sort of cannot see clearly for a second
C. Really increased dizziness
D. Migraine starts shortly thereafter
What makes it worse:
- Computers make it much worse. I even bought a new monitor, but after an hour or so, I get my cluster of symptoms.
- Driving makes it so much worse as well.
- Being in big stores like Walmart and the Mall makes it much worse.
- Cell phone makes it worse and creates migraine pain on the left side.
- I had to move the printer and modem to another room and wireless close to me makes it worse.
- Supplements, foods, and medications can really set off a flareup.
I’m sure there is more, but this is the basic story of my symptoms.
I guess I want to know if this is typical of MAV. I want it to be because I really want a community of others like me to support me and who I can support.
Thanks so much,
Susan