Mayo Clinic diagnosis: Chronic Subjective Dizziness

I went to the Mayo Clinic last week to figure out why I am still dizzy 24/7 even though my initial attack of spinning vertigo was over a year ago. I had been previously diagnosed with MAV by the Chicago Dizziness and Hearing Clinic, who prescribed Effexor. I was not sure about that diagnosis because I found it hard to believe that I had a one-year constant migraine. So I drove up to the Mayo Clinic and spent a few days undergoing tests and meeting with Audiologists, ENTs, and Psychiatrists. It is an amazing facility, and the doctors were tremendous. Here is what happened:

The Audiogram and hearing tests were normal.
The full range of dizziness tests (including Rotary Chair, ENG water caloric, posturography) were all normal.
The ENT exam was normal.
The psychological evaluation showed no depression but a tendency toward generalized anxiety.
Blood pressure, pulse, and blood flow to brain were all normal.
Neurological exam normal.
Previous MRI of the brain normal, blood normal, no lyme disease etc.

They gave me a diagnosis of “Chronic Subjective Dizziness.” They describe this as a conditioned response to a real trauma (such as bppv or an ear infection) where the body gets into a habit of constantly adjusting to the trauma even though it has already passed. The brain is overexcited and looking for patterns and moving back and forth to adjust to what it perceives as motion. They claim it is not a psychiatric condition but rather a ‘software glitch’ where the brain is stuck with an inability to adjust back to the reactions that I made pre-trauma. At first I was dubious of this diagnosis, but the longer that I thought about it, the more it made sense. My bppv (or VN) was quite brutal, and I can understand why my brain went into overdrive trying to adjust, and simply couldn’t ratchet back down. They also showed me a study from Germany that tested whether patients with this diagnosis later turned out to have something more ominous (MS, cancer, Parkinson’s, etc) and the answer was that there was no ominous underlying condition, which I found comforting.

Normally they prescribe Effexor, but since I already take Atenolol for migraine, they are suggesting that I start on Celexa at a very low dose. They want me to keep taking Klonopin for a while to temper the Celexa, then to slowly drop it.

I was incredibly impressed with the Mayo Clinic. The facility is amazing, the doctors and staff treat you as someone special, they work as a team and they have all your records in front of them, and when you ask questions they pull studies out of their files and give them to you. The doctors that I saw were all highly published and well-regarded, and more importantly, they treated me with total respect and concern. There were very few patients there; you get the sense that they take a lot of time on each patient. Anyway, I really felt spoiled there, and I felt that it was a cut above even the highly ranked facilities around here (Northwestern, University of Chicago, etc).

So now I cross my fingers and start on the Celexa, or other anti-depressant, and hope for the best.

I know that not everyone has the time, resources, or insurance to go to the Mayo Clinic, so I wanted to post my experience for those of you who also have long-term 24/7 symptoms.

Great post, thanks Longshort. Good news that you have a diagnosis and got such thorough, professional treatment. That in itself is very reassuring.

Good luck with the new med!

Vic

HI Doug,
I, too, went to the Mayo Clinic. Although I went to the one in AZ, and I am guessing you went to the one in Minnesota? Anyway, they didn’t really do much other than test me on a bunch of stuff and look over my records. They assured me that my brain was functionally fine and that they hoped it went away as mysteriously as it came…not much of an answer. I also went to Chicago, so you and I have walked a similar path in search of answers.
I think the Celexa is a good med to try and I hope that you get some relief.
What dose of Klonopin are you taking?
Keep us posted…
Kelley

Interesting post Doug and glad you had some good service from the doctors at the Mayo. I’m petty sure I have a paper on this topic somewhere I’ll dig up. It doesn’t appear to be in the archive here.

Not sure what to make of the “software glitch” analogy they gave you but who knows? The good news is that Celexa is also (as you probably know) a very good treatment for MAV. So even if it is MAV, you should hopefully see some positive results.

Do you have any classic migraine triggers?

Cheers

— Begin quote from "rockyksmom"

HI Doug,
I, too, went to the Mayo Clinic. Although I went to the one in AZ, and I am guessing you went to the one in Minnesota?
What dose of Klonopin are you taking?
Keep us posted…
Kelley

— End quote

Yes I went to MInnesota which is substantially larger than the ones in Arizona and Jacksonville.

I currently take between one-fouth and one-half of a .5 mg before bedtime, that’s the only time of day I take it.

— Begin quote from "scott"

Do you have any classic migraine triggers?

Cheers

— End quote

I get cluster headaches in Fall and Spring, otherwise it is rare for me to get a migraine headache at other points beyond the cluster.

But I get highly irritated by bright lights, lack of sleep, and too much coffee.

Honestly, I have always been dubious of the idea that I am having a constant migraine without headache. The Mayo’s explanation makes more sense to me, even though the treatment is the same. I think that no one really knows what to call our condition.

Hey Doug,
aren’t cluster headaches the ones with the God-awful pain? A friend of mine used to get them and he used some sort of inhaled medicine and they quit. I can try to find out what it was. Otherwise, he has no migraine issues…but those cluster headaches were supposedly the worst pain he’s ever felt.
Kelley

Im glad you got a diagnosis and I hope you can improve with Celexa. What are/were your main symptoms? Did you ever have any ear symptoms? Did you ever try any other migraine preventatives? I too sometimes doubt the migraine diagnosis, especially since I sorta diagnosed myself, brought it up to my doctor and he agreed because of my family history etc. I have always found it hard to believe migraines can last this long.

I wish you well on the Celexa! I had very good results on Celexa two years ago. I started on a small dose, 5 mg and we up by 5 mg increments. It did take away the dizziness for me, althoug it did increase the dizziness at times while I was increasing the dosage. I have read that taking antidepressants is helpful for generalized dizziness, so hopefully this does the trick for you! I have suffered migraines for years, and while on Celexa had great relief from them as well.

Whatever you do, don’t give up on the med too soon, give it time!! It took me a good 6-8 weeks to feel improvement and int that time I did feel some side effects that were not fun–increased anxiety (keep taking that klonopin!), insomnia, diarrhea, nausea, but it did go away and eventually I was left with no dizziness!

I eventually went off because of weight gain and because I thought I was feeling better. The dizzies came back. Now I’m on topamax and feeling better than ever!!

Good luck!

I’ve read about this condition before. I think the term was coined by a fella named Staab. I think his first name is Jeff but I’m not sure. I thought that they no longer recognized this anymore. I guess I thought wrong.

But from what I took from the article I read was that, if you have something like BPPV, VN or anything that causes dizziness even migraine, your brain has a sort of disconnect from what you were once before. I’m sure that physically, my brain and inner ear aren’t any different than they were 3 or 4 years ago before I had constant dizziness. In fact, as far as tests go, I’m a normal healthy individual with no evidence of any inner ear damage or MS or Meniere’s or anything. Chronic Subjective dizziness makes sense.

Especially in your case where you don’t have any history of migraine activity. I don’t have a migraine history either other than some mild stuff that I’d never consider to be migraine at all. But I only notice this little migraine stuff because now I’m looking for it all time.

Sometimes I wonder, if I were to hit my head hard and not remember the last year and a half when my dizziness started, would I feel off-balance? I don’t know. I also wonder if I were to go to a hypnotist, would it help me overcome the dizziness. The whole idea of it “all being in your head” may have some truth to it. Almost like a placebo in the wrong direction. I really do believe the more you believe it’ll go away, the more likely it will.

Everytime I read a success story, I feel a little less dizzy for a short period of time. Why? I think because reading those stories gives one hope and the thought that this will go away. Placebo effect for a little bit.

Good luck to you and keep us posted. This is a very interesting diagnose.

Greg

Thats interesting maybe i fall into the same, although i have daily headaches, bloodshot eyes,nerve dysfunction and floaters.i dont know if thats subjective dizzy?? I was really sick in the lead up to the big bang (serve ngstagmus) but only had it once. Now 24/7 spinning/balance issue etc.
Do you have visual vertigo on computers etc or probs in dark rooms. I think im more reliant on my eyes for balance now. Im aIso better after lying down for an 1 hour or so. love to have a real expalination & how the red eye thing ties in. We need better testing in oz as you have. Can you keep us updated on celexa side effects/effectiveness may have to go same route eventually as im on a long road to nowhere!!

Doug,

Here’s the paper.

S 8)

Doug - What an awesome experience! I live in your area, but I lucked out because I happened to get referred fairly early on in my ordeal to a neurotologist from Northwestern who is one of the co-authors of the emedicine article on MAV, so he knew right away what it was (I didn’t even have to go to Northwestern because he sees patients out in the burbs).

I did go through a few weeks of “wrong turns.” But that was because I mentioned in addition to being dizzy I was sometimes aware of my heartbeat (not that it was especially rapid or anything - I found out later this is fairly common in perimenopause), so I had to go the stress test/holter monitor route first (normal) - then a CT scan (normal) when I showed up in urgent care after a particularly bad dizzy spell with tunnel vision aura (didn’t know that’s what it was at the time - I THOUGHT I was so dizzy I was close to passing out) - then I was referred to the neurotologist who ordered the MRI (normal).

I bet if I’d started at Mayo, somebody would have listened to the connection I made early on between spiking/dropping hormones and that first dizzy spell - the one that came after I’d cancelled a mammogram for the first time in my life because I was so swollen I felt like I’d given birth and was about to start nursing (and it would have HURT to get 'em squished). A few days later, they went back to normal size, and THEN I got that first, doozy dizzy spell. I’m sure my estrogen had gone through the roof, then plummeted. (Most people associate perimenopause with estrogen decreasing, but actually it spikes and drops and does all sorts of crazy things - things that migraine brains cannot handle.)

I’ve heard that the Mayo model of medicine isn’t even outrageously expensive - that they’ve figured out a way to make it work even within the constraints of stingy U.S. insurance companies. Kelley didn’t seem too impressed with the Arizona branch though it sounds like she was reassured by what they told her - anyway, I like the idea of a team approach, and having them actually show you studies, and it sure sounds like they were thorough.

— Begin quote from "rockyksmom"

Hey Doug,
aren’t cluster headaches the ones with the God-awful pain? A friend of mine used to get them and he used some sort of inhaled medicine and they quit. I can try to find out what it was. Otherwise, he has no migraine issues…but those cluster headaches were supposedly the worst pain he’s ever felt.
Kelley

— End quote

I’ve had one cluster headache in my life and was hospitalised with it because I passed out with the pain. There is nothing like it. :cry:

Muppo, I haven’t talked to you in a while. How are you doing? You still on the Peri? I actually took a break from my Peri at the moment. Hope everything is well!!

Greg

I am very happy for you as it feels so great to get answers!

I am in the same boat with you as I don’t get migraine headaches with pain either, been dizzy for a year with the 24/7 dizzies. I too believe there is something more too this.

I do know however when I get the rotaional vertigo spells- that is a migraine attack. That happens when I don’t get enough sleep, haven’t eaten, etc. Haven’t had one in 6 months since taking Topamax (knock on wood!)

This other 24/7 rocky crap I can’t shake and this diagnosis makes sense. I had just had a baby and 2 days later it hit. I went into surgery sick and woke up spinning so fast I couldn’t even open my eyes and threw up. I’m wondering if this was VN. My world has slowed down since then but has not stopped and I think my brain is still tramautized from that hell.

I wonder why VRT wouldn’t help?? I did that for 6-8 weeks and did nothing (I know with MAV it can worsen so it is a double edge sword.)

I like to believe the brain can compensate. Did they tell you that there is a possibility your brain would ever go back to normal???

— Begin quote from "ilovesalem"

I like to believe the brain can compensate. Did they tell you that there is a possibility your brain would ever go back to normal???

— End quote

I asked them this exact question: “What if we do nothing, will the brain eventually go back to normal?” They said that it probably would, but it might take many years. They couldn’t give a definitive answer.

I also asked, “What if anti-depressants don’t work?” They said that they are having success with a drug that they are giving to Gulf War veterans for PTSD. It begins with the letter P----, but I forgot the name. I was surprised that they did not mention Topamax and other drugs that are often discussed here (nori, ami, etc). Goddamn it, I should have written down the name of that drug.

— Begin quote from "longshort"

 Goddamn it, I should have written down the name of that drug.

— End quote

Don’t suppose it was Pregabalin was it?

journals.lww.com/psychopharmacol … ss.34.aspx

The drug is Prazosin. Interesting…

I have known a few people that were diagnosed with MAV by Dr. Hain and then went to Mayo and were given the diagnosis of Chronic Subjective Dizziness. I suppose at Mayo they stick to the strict criteria of MAV (episodic, etc) and to me this diagnosis makes more sense as well. Sadly, both seem incredibly difficult to treat.

— Begin quote from "beatles909"

Muppo, I haven’t talked to you in a while. How are you doing? You still on the Peri? I actually took a break from my Peri at the moment. Hope everything is well!!

Greg

— End quote

Hi Greg - I read your post re dumping the Peri. I’m still on 8mg per night and dont know if it’s making a difference or not. I’m going to introduced 4mg in the mornings to see if that helps. I feel that it is the Nori doing the most work. Hope you’re ok my friend. :stuck_out_tongue: