In approximately 2006 I started with occasional mild episodes of lightheadedness, imbalance and dizziness. At first it would only occur for 1 to 2 days a week at a very low level where it did not affect my daily activities, but over the past years it has gradually increased to where I can hardly function regularly on a daily basis and just go to bed to sleep to escape this terrible feeling.
I went everywhere looking for help, ENT’s, Neurologist, acupuncture, hypnosis. Went to some of the most prominent facilities in the country, Johns Hopkins, Cleveland Clinic. Nowhere could help and just seemed to blow me off after a few visits.
Finally in 2012 I went to the Mayo Clinic to see Dr. Stabb and his team. They diagnosed it as CDS. They sent me home with list of exercises and drugs to try to help with the problem and thought it may take 6 months-year to help the problem.
I did the exercises and my PCP work closely with Dr. Stabb to administer the drugs. I did stay in contact, by email with Dr. Stabb to keep him posted of my status. For the first 6 – 9 months he did seem interested and continued to respond. But after about a year with my last contact I was only able to communicate with his assistant that gave me 2 options. 1) Make a trip back to Mayo (1200 miles) to speak to one of their doctors about how to live with chronic pain or 2) seek CBT therapy in my local area. Just my impression, but it seemed to me they had just given up and were kicking me down the road. I am really starting to question the entire validity of the “CDS” diagnosis. Most other neurologist I have went to have never heard of it. It seem only Dr. Stabb and his team use this diagnosis.
I have been working with a psychologist using CBT for over 1 year now and my problem continues to get worse. It has now progress were it ruins my daily quality of life every day. Many days just have to go to bed and go to sleep to escape this terrible feeling. I am a total wreck at 68 years of age.
This condition also gives me real problems with anxiety due to feeling like this all the time, but I can control the anxiety with clonazepam.
It is a real shame, I have read so many forum where people are experiencing this problem, but as of yet none of the doctors seem to be curious or interested enough to really look into help or a cure for this condition.

I haven't commented on this site for quite a while now as I'm tired of not getting any answers to this problem after years of looking for an answer. Fortunately for me I have gotten used to feeling this way, if you ever really get used to it. I continue to take Clonazepam which helps with the anxiety this can cause, and started doing all the things I used to do, but had stopped the first couple years. Things like taking walks aren't as fun now, but I do them anyway. In the meantime I will continue to wait for some good news on a cure.

I\'ve had some success with this after being treated for biotoxin (mold) <br />
illness. The illness affects hormone levels, specifically Melanocyte <br />
Stimulating Hormone (MSH), Anti-diuretic hormone (ADH), and Vasoactive <br />
Intestinal Polypeptide (VIP) among others. Those in particular affect <br />
the pituitary and hypothalamus glands, which seem to be related to the <br />
dizziness issue.<br />
<br />
There are a couple simple blood tests you can do at Quest that point to <br />
BTI. Check for MSH because if that\'s low there\'s a very good chance <br />
that this deficiency is what is causing your complaint. MSH is <br />
instrumental in the body being able to regulate its processes.<br />
<br />
The question then is why is MSH low. If it\'s biotoxin illness, you can <br />
tell if you are still being exposed by checking your blood levels of C4a <br />
(Complement 4-a) and C3a (Complement 3-a). The first will be high if <br />
mold is the cause of your problem, the second will be high if it\'s <br />
post-Lyme disease. Mine personally was high in C4a, C3a normal.<br />
<br />
If you do that test, make sure they are testing for C4a, not C4. C4 is <br />
a more common test because it\'s related to things like cancer diagnosis <br />
but it doesn\'t show anything related to biotoxin illness. Also, from <br />
what I have heard, Quest does a better test for this than LabCorp.<br />
<br />
My C4a was at 15000, and norm is under 2800. After a ridiculous amount <br />
of mold remediation and treatment for 4 months with Cholestyramine, <br />
these levels for me are now down to 2300, within range.<br />
<br />
From what I can deduce, migraine is comorbid for the CSD, and may even <br />
be the same condition. But what causes the migraine is key, and for me <br />
it\'s almost certainly exposure to biotoxins (specifically mold in my case).<br />
<br />
All it takes is one water leak that lasts for more than 48 hours <br />
interrupted, and mold will grow there. If you are genetically <br />
predisposed, like me, then your body begins a fight that it\'s literally <br />
incapable of winning and will destroy itself in the process. CSD for me <br />
was just one symptom of this systemic disease.<br />
<br />
<br />
<br />

Have you worked with a psychologist and psychiatrist? I ask because CSD feeds on emotional and biological feedback to the brain. For example if when you first experienced your CSD symptoms you had been pretty stressed about what ever. The next time you experience levels of stress comparable to the first occurrence CSD will act up. I know what you're thinking.....CSD is stressful! And you are so right!

CSD can have many triggers and if you're not working with someone to help you sort out the triggers (psychologist) and someone to regulate meds for anxiety it creates (psychiatrist) then those are things you can do to help yourself. CSD will control you if you let it. But,you have the ability to live a life where your illness doesn't define you or control your every moment.

I was 25 when my CSD started. I saw every doctor in the area. That was 2011. I got a diagnosis that Mayo was to confirm in the fall of 2013. My appointment wasn't until August 2014. I'm going to be 29 in a few weeks, and I thought CSD had ruined my life. But really this disease has saved me. We found out I have major depression and it runs in the family. We found out the anxiety ran in my family. We found out I have vestibular migraines that trigger and intensify my CSD. We found non conventional ways to help me work on my balance and panic. I personally work with dogs. I also research CSD and keep myself up to date.

You can't hope for a miracle pill. CSD is complex and as individual as each of us are. You have to choose to beat it! Your brain is powerful use it against itself!

Also chronic exposure to high levels of biological triggers like mold <br />
can cause the immune system in some people to go crazy and not turn <br />
off. It will use up hormones that are necessary to regulate <br />
fight/flight hormones.<br />
<br />
Before you decide that you need to go the psychiatrist / anxiety med <br />
route, get some blood tests and see whether these are out of whack:<br />
<br />
Complement 3a (C3a): high in post-Lyme disease (normal if mold is trigger)<br />
Complement 4a (C4a): high in mold illness (these are not to be confused <br />
with C3 or C4)<br />
Human Transforming Growth Hormone Beta-1 (TGF-B1): high, linked with <br />
asthma / sinus polyps<br />
Melanocyte Stimulating Hormone (MSH): low, will cause abnormal <br />
fight/flight responses, insomnia, lots of other problems<br />
Anti-Diuretic Hormone (ADH) aka Arginine Vasopressin (AVP): low, leads <br />
to frequent urination/dehydration, as well as fight/flight issues<br />
Vasoactive Intestinal Polypeptide (VIP) : low, often the key to feeling <br />
better after these bio illnesses<br />
<br />
You owe it to yourself to get better not just put on a bandaid. If it <br />
is in your head then fine, but if you are really sick you\'ll have other <br />
health problems arise eventually. These blood tests are available at <br />
either Quest or LabCorp, and insurance will usually pay for them.<br />
<br />
If you are high in C4a, then you are probably living in a moldy <br />
environment. Simply cleaning it up (not always easy) or moving to a new <br />
place may make you feel 100% better.<br />
<br />
I had every symptom under the sun. I used to take 1mg clonazepam a day, <br />
but now I am down to a trace (0.0625 mg). My levels on these blood <br />
tests were off the charts, but by going ballistic on my home and <br />
following some of the therapies for biotoxin illness, I am way better <br />
now. My blood tests are normal, and most of my symptoms are going away.<br />
<br />
Good luck, I\'m happy to answer any questions if it helps anyone.<br />
<br />
<br />
<br />
<br />
<br />

@robert

What do you mean everything? I can believe in no complete cure but nothing has given any relief? I'm 29 and this started when I was 25. Now, I'm a bit older than you, but I am refusing to give up. I work with multiple professionals and I've been to Mayo to confirm my diagnosis, but I keep trying new things. I hate medications, but in my case they are needed. I use one medication to keep calm and help me sleep, one to regulate the seritonin in my brain. I take the third to help with my vestibular migraines and then I make the rest up as I go.

I work with dogs to help me with balance training and exercise. I also increase my dopamine levels by playing with them which helps me combat my depression. They help me teach myself to tolerate noise as I have hyperacusis and no one treats that.

I want to ride a bike but I can't balance one anymore so I got a bike trainer. It makes me dizzy but I am up to 5minute intervals from 15 seconds.

I guess what's bugging me is I hear a lot of people that sound like they have given up? Or maybe they haven't accepted that some things don't go back to the old normal.

What do you think?

You are correct. I have completely given up for the time being. I\'ve worked at it for 8 years with no luck. I wish you the best in your life and hope you get better. Take care!<br />
<br />
Regards,<br />
<br />
Robert Caridi<br />
Robert\'s Custom Woodworking

I started with sporadic symptoms 2 1/2 years ago. The dizziness became constant about a year ago. I've run the whole gauntlet of doctors and diagnoses. It's just in the last few weeks I've learned of CDS, and it certainly fits with what I'm dealing with. The doctors have been treating me for "migraine with vestibular dysfunction". I definitely have migraine issues, and some of the medicines have helped with the dizziness. But all the ones that have been effective (of course they're all antidepressants of some type) make me unable to sleep. As in 4 hours a night of sleep on average.

There's a doctor nearby that specializes in CSD. She's board certified in neurology and psychiatry. My appointment is in about a month and I can't wait to see her.

One thing that has really helped me is allergy shots. Things have been the worst in the spring and fall, times when my allergies are at their worst. The shots have definitely helped. Also, PT for balance helped A LOT!

All that being said, I refuse to give up. I have two young kids and refuse to accept that I can't play ball with them. Or taking them skiing some day. Or ride bikes with them. There are so many fun things in our future. I refuse to let CSD rob me or them of those experiences.

I know what you are going through. My dizziness started over 5 years ago and I have been all over, Johns Hopkins, Cleveland Clinic and even Mayo's (Dr, Staab) in 2012. Been to many other ENT's, Neurologist, Allergist, acupuncturist and even a Psychologist. Had every kind of test MRI, MRA, ear tests. Taken all kinds of drugs. None of the drugs helped and some even had side effects worse than the original dizziness. The dizziness has progressively just gotten worse to where it now has a serious impact on my life. Can not do many of the things I used to enjoy.

If you or anyone ever find something that helps please post what it is. I have just gotten tired of going to new doctors with no help or improvement.

I am going to have my doctor run these tests. So far the only thing that she has ran is B12 and D which I am very low. I also have Lupus but so far it is only on my skin. My dermatologist tests me for full blown lupus and keeps saying that I am fine with that. I hope my doctor agrees to run the tests. I go in January.