One month ago my balance disorder and cognitive problems on top of my pre-existing ME/CFS had become so bad that when my neurologist wrote an Rx for a handicap placard and I took it to the Dept. of Motor Vehicles I didn't get any dirty looks as I took it to the express window because I was moving with such evident genuine impairment.
I had suffered several years of gradually worsening balance problems but suddenly in the past year the progressive worsening accelerated and the medical testing intensified...all of it negative:
MRI of the brain MRI of the inner ear EEG VNG study (only minor problem)
Then on my own I found a website on dizziness that mentioned something called "vestibular migraine".
I had never heard of that. The more I read about it, it sounded exactly like the periodic squeezing feelingly in my head and cognitive dysfunction that I would get along with my "motion intolerance" to any head movement at such times. I would freeze mid-sentence and mid-motion wherever my arms were positioned when I would get these attacks and be unable to talk.
I could recognize what was described as the "prodrome" or "aura" that would precede the migraine.
I was amazed to read that the association of this type of migraine with debilitating vestibular balance impairment was considered "common" because neither my PCP nor my neurologist nor my ENT had suggested this diagnosis to me as an explanation for my symptoms.
As it happens there is an off-patent drug, topiramate (Topamax) that has been shown in "evidence-based" peer-reviewed trials to be effective for migraine and so I was able to rush to down to my neurologist and persuade her to prescribe topiramate for me instead of her choice. I happened to have a copy of a Journal of Neurology article that supported my selection and to her credit she deferred to the recommendation in that article for the topiramate.
The effect of the drug on my condition of amazing!!!
I went from holding onto walls and railings while walking to walking normally unassisted with excellent posture. I had been in danger of losing my driver license due to being unable to tolerate going around turns, and now driving around curves is no problem at all. I still have my ME/CFS problems and I still have migraines but they are mitigated by the topiramate, but my balance vestibular problems are 100% cured!
nice job dr stc! this sounds like something i’ve encountered in a very much milder form than yours.
I’ve had several episodes of all that. It’s frightening and once made me throw up. I hated losing control like that, doubt I could have gotten myself by myself down the front steps and into the car.
I had what I thought was BPPV as I would get severe vertigo whenever I would roll over in bed. I did a home remedy which involved lying on my back with my back and head lower than my legs and then move my head in different ways. It worked instantly.
Timely article because I’ve been dealing with vertigo, Benign Paroxysmal Positional Vertigo, and the anti-vert the doctor gave me doesn’t help much.
I do get headaches with the symptoms, but I thought the vertigo was causing the symptoms, not vice-versa. Going to check out topamax to see if that will help.
Thanks, FRiend
Easy solution for milder vertigo.
Lay across your bed with your head hanging over the edge. Bring yout head level with your body (looking at the ceiling.)
Slowly turn your head to the right so you are looking at your right hand side (for me, the bottom edge of the bed,) Slowly bring your head back to center looking at the ceiling again.
Repeat by turning your head to the left (for me the wall that the head of the bed is against) and slowly bring it back to the center — looking at the ceiling again.
Sit up slowly. Vertigo may have disappeared. If not, repeat this process. It’s the crystals in your inner ear that will eventually fall back into place and you will be OK.
Vertigo hit me coming out of church one day and another couple had to take me home and get me back to bed.
I have had severe vertigo several times. Mine would only last about 2 weeks. The doctor said mine was allergy induced. It has been a while since it was bad but occasionally the room will spin if I get up too fast and my left ear gives me a whooshing sound when I bend over.
It is very debilitating and I hope it never gets me again.
bttt
I get it from too much fluid in my inner ear. Doctor put me on a light does of a water pill that is used for high blood pressure. Used to be chronic, would come and go for weeks at a time.
No problems since the water pill.
I have aura migraines but they are relatively benign.
My husband’s uncle was in the Air Force and his vertigo problems got so bad he had to retire. He went through episodes where he couldn’t read, had to walk with a cane. He went for decades having longer and longer episodes and at 87 he found lipo-flavinoid? at WalMart and he has been fine the past two years.
Here's another possibility for vertigo episodes. I recently had a severe spell of vertigo when I was on antibiotics for a case of bronchitis. Turns out Zithromax has this as an uncommon side effect. I found it significantly affected my cognition and balance. Fortunately it resolved once I finished the prescription.
Here is a website that explains all of the various causes of dizziness and introduced me for the first time to the concept of “vestibular migraine” which I had never heard of:
Here is the link to the American Academy of Neurology article recommending which medications work for migraine and which ones do not:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3335452/
I’m printing all these great suggestions for my “dizzy” file.
I’ve been successful in tracing my dizzy episodes to something I ate or drank. I have problems with products containing some spices and ginko (herbal teas, vitamins), as well as some cheeses especially aged or older ones (perhaps mold is involved). It’s hard to pinpoint as there are so many ingredients in items (as well as variable production and handling techniques) plus I often had a delayed reaction. Once I straightened out my diet by trial and error, it became easier to spot the culprit when I ate or drank something new. Darn vitamins gave me daily problems until I accidently skipped a few days and noticed I felt better. I get the occasional spell with stuffy head colds, but figure it’s a fluid issue in the inner ear as it diminishes with decongestants.
Never was diagnosed, did my own research. Funny thing is, later on, had another DCS hit and the post hit diagnoses included a test for PFO (hole between heart chambers). Well known for DCS propensity, inner ear DCS in paticular. Had the hole surgically closed with an Amplatzer gizmo.
What I tipped on from your post was your mention of aura. Turns out, the largest group of people that have PFOs closed are migraine sufferers, who typically suffer aura as well. I didgaet auras, but no migraines. None since closure
Probably not related, but it caught my eye.
Had a similar problem but it was low blood pressure standing up.
It’s called SYNCOPE...similar to what happens when you suddenly stand up after sitting for a length of time (orthostatic hypotension)
After a lot of tests the cardiologist confirmed it with the “tilt-table” tests and it’s now treated with Florinef.. The generic is fludrocortizone. It helps the body regulate salt, fluids and blood pressure.
Need a Walker to get around.... anything to avoid a fall!
I’ll leave the motorized chairs to the fat ladies at Walmart.
ping for later
Excellent news!! I am so happy for you. As someone who has had severe attacks of vertigo and can be balanced challenged I completely understand you situation and am so happy that you are 100% cured! Fantastic!!
ping to an update on my balance disorder cure...
I’ve still got lots of issues but being able to walk with good balance in between my other orthostatic and ME/CFS problems is now not one of them!
So glad you have found the problem and are feeling better
Praise God, the great physician!