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Chronic Subjective Dizziness-CSD

Posted by @chester in Eye, Ear, Nose & Throat, Jun 14, 2012

21 months ago I suddenly started experiencing a dizzy/imbalance feeling that does not qo away. It starts from the time I wake up and varies in intensity through out the day. I've had all the tests from A to Z at Mayo clinic. My diagnosis is what they call Chronic Subjective Dizziness. Therapy hasn't worked, but taking anxiety medication daily has helped lessen the feeling. After all this time I've gotten used to feeling this way and don't panic nearly as much on the bad days. I think anxiety is the main culprit which is probably why the medication helps some. I'm still hoping it goes away as suddenly as it started, and soon.

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Posted by @albatross, Jun 19, 2012

I feel your pain brother. I was at Mayo last nov.,and diagnosed with CSD. Mine started 27 mos. ago. I too had numerous tests and scans by a variety of specialists before heading to Mayo. They believe it first started out with migraines over a period of years. Then in March of 2010, I came down with what my pcp thought was an ear infection. I struggled the next few wks with intermitant dizziness but was still able to work. Then came the boatloads of anxiety. It came in unpredictable waves so strong that I could not drive or be driven for several mos. For the next year and a half, I was put on 10 or 12 different meds. including anti-depressants and anti-seizure types. Not one helped and often made me feel worse. I too use a small daily regimin of anxiety med (benzodiazapine). This does not cure or eradicate the symptoms, but rather settles them a little. Aside from the personal and professional ramifications, the hardest thing is to get the local doc's to take an interest in understanding this illness and the possibility of emerging treatment. Sorry to be longwinded, I was just curious if your situation was the same. Would love to hear from you or anyone else similar experience's. Best of luck.

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Posted by @chester, Jun 27, 2012

At this point I don't think the doctor's know what to do with me other than take the anxiety medication. Fortunately I have been able to drive alright, sitting is definately better than walking. Weather also seems to make a difference. It gets worse on days when weather fronts are moving in, probably the barometric pressure affecting the inner ear is my guess. There sure seem to be a lot of variables to this problem.

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Posted by @albatross, Jun 30, 2012

Of the anxiety medication, which one and the dosage are you taking. Just wonder if I should inquire about a longer lasting one instead of the alprazolam ?


Posted by @chester, Jul 2, 2012

I was taking Ativan until January of this year (2012), but it didn't last very long. I now take Clonazepam 0.5mg which lasts longer. I split the tablet in half and take .25mg when I get up in the morning and again eight hours later. I take the smaller amounts to reduce the sleepiness it causes.


Posted by @ahall0718, Oct 5, 2012

Does the clonazepam work and are u able to take to every day? My dizziness is unbearable especially with the change in weather. Ive dealt with this for years and im desperate! I take ativan right now, is clon better for allevieting dizziness?


Posted by @chester, Jan 2, 2013

Clonazepam is related to Ativan. It pretty much does the same thing for me, but lasts twice as long. I've been splitting a 0.5mg tablet in two and taking each half about eight hours apart. Taking a full tablet twice a day makes me too tired. I've been doing this every day for about a year now.


Posted by @cannonr, May 9, 2013

Clonazepam is shown particularly effective among the benzo's in fighting migraine, which is what this probably is.


Posted by @dbennett24, Nov 8, 2014

does alprazolam last longer than klonopin?


Posted by @jeffjh, Jul 26, 2012

Your note really hits home with I suffer from CSD as well. The weather changes wreak havoc on me!


Posted by @jeffjh, Jul 26, 2012

p.s. I have chronic sinus issues you said...LOTS of variables!


Posted by @chester, Jul 26, 2012

I too have sinus problems which probably makes this worse and may even be the original culprit for this. I think a virus infection I had when this all started messed up my vestibular system. I've been for the last couple years using a nasal saline rinse once a day which has helped with some of the sinus issues.


Posted by @ahall0718, Oct 5, 2012

I went to mayo and had same diagnosis. Nome of my local docs get it and treat me like im nutz.


Posted by @albatross, Oct 5, 2012

I don't know about the clonazepam, I use a small amount of xanax. It seems to cut down on the dizziness, but does not totally take it away. I have not noticed a change in symptoms that coinsides with the weather but I'll check that. As my post above says, I've been dealing with this going on 3 yrs now. Is your situation similar? Which mayo did you go to? Who did you see? Thanks, hope to hear fom you soon.


Posted by @chester, Jan 2, 2013

I went to Mayo Clinic in Rochester Minnesota.


Posted by @dbennett24, Nov 8, 2014

have you been checked for allergies.l my allergies started in 1986 and I kept getting dizzy and had a lot of allergies to dust, dust mites, trees and pollen. might be worth allergy tests.


Posted by @lilbobber15, Nov 9, 2014

I have known allergies and took super high doses of nasal sprays. Nothing happened at all. I just live with it now. It sucks but everything happens for a reason and you can't let it get in the way of life. Somebody somewhere has it worse.



Posted by @humminbird1963, Sep 27, 2012

Chester it could be vertigo in which the room spins and you are unable to walk? I have post concussion and vertigo which is part of an inner ear problem that effects balance. I went to a ear nose and throat specialist, however mine was caused by the concussion.


Posted by @ambera, Oct 13, 2012

I had parodid cancer removed when I was 17. I have been sick, fatigued and in extreem pain ever since. (10 years now). I have been dianosed with everything from CSD, arthritis, deginative disc disease, fibromyalgia, many other pre-cancers, cronic sinus infections, and more. I get sick often. I have seen many specialist, but because of how my insurance works, I can never get a holistic approach to all of this. I'm always working with my diet to try to help. I suffer from PTSD and anxiety. Both the physical and mental aspects of this is waring me thin. How does diet play in to CSD for the rest of you?


Posted by @larryg1, Nov 22, 2012

Im experiencing similar problems.Im 57 about 6/7 months ago it started gradually and has got worse.Trying phyical therepy Cant say yet if its helping dont want to do drugs .


Posted by @dizzydude, Dec 18, 2012

It's good to hear from others suffering from the same problems. About 6 years ago I had a vertigo attack following an inner ear infection. Although the vertigo subsided quickly, chronic fatigue, brainfog, and "visual vertigo" have been present ever since. After multiple specialists and tests, everything came back negative and no clear diagnosis was found. The symptoms were extremely debilitating and had a signficant impact on my personal and professional life. Without a clear diagnosis, I resorted to identifying trigger factors and avoiding them. I also followed some physician advice and changed my diet to eating more bananas, fibers and other sources of potassium, as well as adding some supplements. I quit alcohol and tobacco altogether, reduced my caffeine intake and increased the amount of physical exercise. One of the physicians prescribed Serc 24mg which had a significant impact. All of these measures have helped me cope with this problem but I still felt that none of them addressed the real source of the problem, but rather its manifestation.

I have always had a history of anxiety. To that extent, some of the physicians recommended seeing a psychologist, which I have been doing for the past 8 months with limited results. Recently I have seen a psychosomatic specialist who suggested a Somatoform Disorder, a diagnosis that has shed some new light into the problem due to my nervous-system medical history with IBS and psoriasis since adolescence. This, together with CSD are the diagnoses that best describe my symptoms.

I would also like to hear from anyone else who has similar experiences.

PS: weather fronts are also tough for me!


Posted by @cannonr, May 9, 2013

All due respect, I think Somatoform Disorder is a bullcrap diagnosis from lazy doctors. What you have sounds like Migraine (which is not headache but a larger encompassing neuro disease) and Migraine-Associated Vertigo.


Posted by @purvissp, Jul 31, 2013

Did the Serc help your dizziness?


Posted by @gengenevieve, Feb 14, 2013

Hello Dizzydude. I have had similar experiences since having a severe sinus infection in 2009. For several months I had daily dizziness and problems with visual stimuli, as well as a sensation of fluid and fullness in my left ear, and then the symptoms suddenly disappeared.

For three years symptoms were almost absent, but they returned with a vengeance, again after a sinus infection, in July 2012. I have been tested for Meniere's disease, which has been eliminated as a cause, and have seen a neurologist, who suspects migraines may be implicated. I definitely get cervicogenic headaches from time to time, but do not think the dizziness is migraine-related; migraine medications have not relieved it at all. None of the ENTs, nor the neurologist, I have seen, feel that my sinus or ear problems have much, if anything, to do with my dizziness, but I do.

I too have a history of anxiety problems and am quite aware that I get caught in a vicious circle of dizziness and anxiety feeding upon one another. Doctors have generally just told me "you need to deal with your anxiety." I see a therapist weekly, but she does not know specific techniques to help with this problem. I found Dr. Jeffrey Staab and his colleagues' research online and realized that Chronic Subjective Dizziness was exactly what I was experiencing. I am fortunate to be in MN, and am going to the psychiatry clinic at Mayo, where Dr. Staab now practices, later in the month. For the first time since last July I feel like there is some hope for a correct diagnosis and treatment that might actually help me. If you are the kind of person who is able to read such things, there are a number of articles and studies accessible online by Dr. Staab and his former colleague at Penn, Michael J. Ruckenstein, which discuss the disorder and might be enlightening for you.

I am a primarily self-employed in fine art and commercial photography, and this illness has been devastating on my professional life over the past eight months. Colleagues and even friends do not understand how debilitating this is; even on days when I do not feel dizzy the "brainfog" is usually present, and it has prevented me from being able to work at times, but also to look for work or do billing or accounting related to self-employment, so, I am now at the point where no calls for work are coming in. I do have two very part-time jobs that are very low-stress and that I have been able to continue. But it is only because I had money in savings and am a resourceful person who lives fairly simply that I am not completely impoverished after eight months of almost no work.

It helps to know about this diagnosis/condition to to read of other people who have experienced it. There have definitely been days in recent months when I simply thought I was losing my mind, and yet I felt in my gut that there was some underlying physiological issue, because this was so unlike any other symptom I had encountered in 30 years of living with anxiety.

Best of luck to you in finding an effective treatment.


Posted by @mgvarela, May 7, 2013

Sorry to hear that....I have the same smptoms for over 7 years...i'm about to apply for long term disibility from work... have seen dorctors from Barrows and Mayo Clinic and both have tell me that same thing.... Vestibular disorder.and it all started with chronic sinus infections...Good Luck...


Posted by @william77, Jun 11, 2013

Wow. I just read your post. I experience the same thing. I know that any type of upper body lifting makes this horrible feeling worse. I also have had difficulties with anxiety, but this "dizziness" has been going on for years and the only thing that makes it worse or really triggers it is anytype of upper body work . Shoulders arms traps. I am on a wtf journey because I can barely stand or work or concentrate and nobody can seem to help me. Though it makes me feel also like I m losing my mind its kind of comforting to know I m not the only one


Posted by @cannonr, May 9, 2013

I've had it eight years, following a concussion and then sinus polyps with infection.
I've read it called Migraine-Associated Vertigo, which doesn't require a headache and isn't ruled out just because migraine drugs didn't work.
QUESTION TO ALL WHO HAVE THIS: Do you ever have high readings of Eosinophils in blood tests? (It's a theory I'm working on...)


Posted by @rapple, Sep 21, 2013

I am having what is described as CSD. After increasing detailed computer data entry type work, I began having frequent dizzy spells that come and go all day. I also have unexplained high eosinophil counts in blood work. No cause is found, and then it just goes away for a while.


Posted by @cannonr, Sep 21, 2013

That's interesting. Since I posted this a few months ago, I have found that there is a syndrome caused by an incorrect immune response to biotoxins. This can include things like Lyme disease and ciguatera from fish, but most commonly is from a reaction to molds that grow in buildings that are water damaged. It is not mold allergy, nor is it "toxic mold" that you hear about it. There are numerous molds that can cause it, and they all grow out of control in nice air-conditioned environments when there's water leakage. It's not an allergy, it's an innate immune dysfunction.
Irate as I get about subjective diagnoses, the nice part about this syndrome is that there are definitive blood tests to check for the immune responses that are a part of it. There are 9 blood tests, and the most that normal ppl will test positive for is 3 (it's usually 0 or 1), and the fewest that people with Biotoxin Illness will have is 4, but it's usually more. I had 7.
The syndrome affects multiple systems in the body, so it's not "in your head" and you aren't a hypochondriac. Dizziness, vertigo, headaches, and symptoms typically associated with migraine are all part of it.
The nice part is that it's quite treatable, they have had tremendous success. The technical name for it is Chronic Inflammatory Response Syndrome (CIRS), but it's also known as Biotoxin Illness.
This site is very good for understanding the syndrome:
The site was made by the parents of some children who had the disease and were treated successfully, and they wanted to help others. There's no magic snake oil formula to buy, it's a treatment protocol that uses drugs very commonly used for other diseases.
The first step is to get out of the water-damaged building. 60% of patients feel better just from that. The next step is to take a medicine called Cholestyramine, which is a cholestrol medicine originally but binds to the mold fragments circulating in the blood/bile that stimulate the incorrect immune response.
I have improved greatly since starting this therapy. I am rarely dizzy any more.
Good luck to everyone, feel free to reply/msg me if you want more info.


Posted by @cannonr, Sep 21, 2013

Please see the post I wrote a few lines down about Chronic Inflammatory Response Syndrome (also known as Biotoxin Illness). This was what was wrong with me, and odds are it may be what's wrong with you too. It's not all in your mind.
This describes it:
Be sure to look at this list of 37 possible symptoms. Normal people may have 4 or 5, biotoxin illness patients average 21, I had 27.


Posted by @lilbobber15, Sep 21, 2014

I have most of you beat. I've had CSD for over 8 years now. Its everyday and i feel everything everyone is talking about! Not happy to hear you guys have these issues but glad im not the only one. I've been everywhere and im out of options at this point even tried hypnotism. Did not even phase me. No medications or therapy do anything except make me worse. Wake up with it and go to sleep with it. Like i said i had it for over eight years. not sure how old any of you are but im 18. Ive had this since i was 10. I went to mayo and saw Staab in 2012? I feel all of your pain and hope your not a lost case like i am.

Wanted to share my story best of luck to you all!


Posted by @purvissp, Sep 22, 2014

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.


Posted by @overcomer11, Oct 14, 2014

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!


Posted by @cannonr, Oct 14, 2014

Also chronic exposure to high levels of biological triggers like mold
can cause the immune system in some people to go crazy and not turn
off. It will use up hormones that are necessary to regulate
fight/flight hormones.

Before you decide that you need to go the psychiatrist / anxiety med
route, get some blood tests and see whether these are out of whack:

Complement 3a (C3a): high in post-Lyme disease (normal if mold is trigger)
Complement 4a (C4a): high in mold illness (these are not to be confused
with C3 or C4)
Human Transforming Growth Hormone Beta-1 (TGF-B1): high, linked with
asthma / sinus polyps
Melanocyte Stimulating Hormone (MSH): low, will cause abnormal
fight/flight responses, insomnia, lots of other problems
Anti-Diuretic Hormone (ADH) aka Arginine Vasopressin (AVP): low, leads
to frequent urination/dehydration, as well as fight/flight issues
Vasoactive Intestinal Polypeptide (VIP) : low, often the key to feeling
better after these bio illnesses

You owe it to yourself to get better not just put on a bandaid. If it
is in your head then fine, but if you are really sick you'll have other
health problems arise eventually. These blood tests are available at
either Quest or LabCorp, and insurance will usually pay for them.

If you are high in C4a, then you are probably living in a moldy
environment. Simply cleaning it up (not always easy) or moving to a new
place may make you feel 100% better.

I had every symptom under the sun. I used to take 1mg clonazepam a day,
but now I am down to a trace (0.0625 mg). My levels on these blood
tests were off the charts, but by going ballistic on my home and
following some of the therapies for biotoxin illness, I am way better
now. My blood tests are normal, and most of my symptoms are going away.

Good luck, I'm happy to answer any questions if it helps anyone.


Posted by @chester, Sep 22, 2014

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.


Posted by @cannonr, Sep 22, 2014

I've had some success with this after being treated for biotoxin (mold)
illness. The illness affects hormone levels, specifically Melanocyte
Stimulating Hormone (MSH), Anti-diuretic hormone (ADH), and Vasoactive
Intestinal Polypeptide (VIP) among others. Those in particular affect
the pituitary and hypothalamus glands, which seem to be related to the
dizziness issue.

There are a couple simple blood tests you can do at Quest that point to
BTI. Check for MSH because if that's low there's a very good chance
that this deficiency is what is causing your complaint. MSH is
instrumental in the body being able to regulate its processes.

The question then is why is MSH low. If it's biotoxin illness, you can
tell if you are still being exposed by checking your blood levels of C4a
(Complement 4-a) and C3a (Complement 3-a). The first will be high if
mold is the cause of your problem, the second will be high if it's
post-Lyme disease. Mine personally was high in C4a, C3a normal.

If you do that test, make sure they are testing for C4a, not C4. C4 is
a more common test because it's related to things like cancer diagnosis
but it doesn't show anything related to biotoxin illness. Also, from
what I have heard, Quest does a better test for this than LabCorp.

My C4a was at 15000, and norm is under 2800. After a ridiculous amount
of mold remediation and treatment for 4 months with Cholestyramine,
these levels for me are now down to 2300, within range.

From what I can deduce, migraine is comorbid for the CSD, and may even
be the same condition. But what causes the migraine is key, and for me
it's almost certainly exposure to biotoxins (specifically mold in my case).

All it takes is one water leak that lasts for more than 48 hours
interrupted, and mold will grow there. If you are genetically
predisposed, like me, then your body begins a fight that it's literally
incapable of winning and will destroy itself in the process. CSD for me
was just one symptom of this systemic disease.


Posted by @jackiewoody, Dec 22, 2014

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.


Posted by @overcomer11, Oct 15, 2014


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?


Posted by @lilbobber15, Oct 15, 2014

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!


Robert Caridi
Robert's Custom Woodworking


Posted by @fedge, Nov 19, 2014

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.


Posted by @purvissp, Nov 19, 2014

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.


Posted by @jackiewoody, Dec 22, 2014

I have been suffering since 9-13-2013. I was driving on the freeway with a friend in a construction zone and he rolled up his window & that's when I started to not feel right. I wasn't sure if I was having a stroke or a heart attack. Went to the ER & they said vertigo. When the dizziness didn't go completely away I went to an ENT & it was determined that it's not my vestibular system. Then to a cardiologist & it's not my heart. Then to a neurologist for tons of MRI's and scans. Everything normal. I've been through vestibular & regular therapy & it helped some. Tried all kinds of drugs and shots & most of them made me paranoid. Now my family doctor has me trying Klonopin 0.5 mg twice a day but it doesn't last long enough. My doctor says that she doesn't know what else she can do for me. Perhaps she has never heard of CSD. I have issues with anything that requires my head to move. Driving on the freeway and being anywhere there is multiple noises going on. Even at a family gathering makes my dizziness worse. I actually do better when I am moving about. However, I can't over do it, that causes me to have flashes in my right eye. I have no sleeping issues other than as soon as a lay down, I fall asleep quick. I'm going to ask my doctor to run some more blood tests:Complement 3a (C3a): high in post-Lyme disease, Complement 4a (C4a), Human Transforming Growth Hormone Beta-1 (TGF-B1), Melanocyte Stimulating Hormone (MSH),Anti-Diuretic Hormone (ADH) aka Arginine Vasopressin (AVP), Vasoactive Intestinal Polypeptide (VIP)
Maybe one or more of these will give me some hope.


Posted by @william77, Feb 3, 2015

I also have been dealing with csd. I have had many tests with no results. Mostly i have been told these are anxiety issues....thats not it. I was in two car accidents between 18 and 20 years ago. Symptoms gradually came and went. Now since November of 2013 it does not stop. I am convinced the dizziness stems from these accidents. Any advice would help. It is becoming increasingly difficult to navigate work and life in general.


Posted by @overcomer11, Feb 3, 2015

I know that accepting the diagnosis of CSD is more than difficult. I
developed it in January 2011 and wasn't diagnosed officially until August
of 2014.

I have had all sorts of diagnosis along the way, but what I am sure of is
that CSD is like an add on disease. It does not exist alone. If doctors
find nothing damaged in your vestibular system it doesn't mean nothing is
affecting it. I have vestibular migraines that the CSD uses to amplify
itself and flare up. There was no test for this type of migraine except to
treat for it and see if my described symptoms improved.

When medication is involved, trying one medication may not be the solution.
Everyone's brain chemistry is different so not all medications are a
perfect fit for everyone. Klonopin is not generally proven to be the best
solution for CSD. You should contact Dr. Shepherd about the current
medications used for CSD patients. You also need to remember medication is
not a cure but a method to manage.

CSD is always accompanied by other diseases be they physical or
psychological. Those diseases have to be treated as well because CSD uses
them to "feed" on if you will and "flare" up. I can tell you that CSD
appears to come out of nowhere, but that is never the case once it's been
figured out for a person (if it really is ever figured out).

I have it mostly figured out for myself with a lot of help and I can't work
right now. CSD has changed the way I live my life, but I still have a life.

If you choose the victim stance you will be miserable. If you choose to
live and fight for every step you will feel the strife of fighting to live
your life the way you want, but you get to live and not just some shell of
a life.

Keep looking for your solution!


Posted by @Gavin, Jan 1, 2016

My Story,
I made a promise to myself a long time ago that if I ever beat this CSD than I would tell my story and how I dealt with it. As when I was in the midst of this hell it was rare to come across any success stories or hope.
For me it started on the 16th December 2013, where out of nowhere I had what I would later learn was a panic attack. The panic attack only lasted for a few minutes but a residual dizziness sensation stayed with me permanently, some days really severe and other times quite mild but always there. I guess sometimes if I was really busy doing something fun I would forget about it for a while.
I had all the tests you can name and think of and as nearly everyone else says they all came back normal.
In the early stages I’d notice it as soon as I’d get up in the morning and it would stay with me all day until I went to bed. The first six months I was dizzy but no other symptoms to speak of, I kept reading how it could be anxiety related but I didn’t even know what anxiety was and didn’t think I had it. At around the seven month mark this all changed as after seeing a doctor he advised me that I had developed an anxiety disorder from dealing with all of this.
He prescribed me Pristiq which I came home and took 1 tablet and from that moment on my dizziness turned in to a nightmare, I think adding this drug to my system caused what levels of anxiety that I had to go crazy and along with it my dizziness. I only ever took one Pristiq as I nearly topped myself from the panic it caused but after that I went on Lexapro for 6 months and then Zoloft for about 8 months going up and down dosages trying to find some magic dose. I had 8 weeks off work after the day I had my first SSRI, it was the toughest time I’ve had in my life.
I’m not convinced any of these helped me much at all but I do believe they may work for others they just didn’t do a great deal for me in regards to fixing the dizziness and disequilibrium.
So as time went on I still kept searching for answers and trying every alternative therapy under the sun.
I stumbled upon an article about the MTHFR gene which I did a bit of research into and got a test done, turns out I didn’t have this gene however we worked out that I was undermethylated.
Have a quick search of the symptoms of undermethylation (histadelia) on the net and you’ll find the symptoms are quite common amongst this group of CSD sufferers who generally have over active brains etc
The doctor I saw told me to buy some L-methionine which is an essential amino acid (I got mine from IHerb, quite cheap) I also have this with a zinc tablet and a magnesium tablet every morning.
The last 4-5 months have been basically dizzy free for me, after about a month on this combo I noticed it was just gone, even in really stressful situations where my dizziness previously would be high it’s just not there anymore. I have no idea which one of these has fixed my dizziness issue but whatever it is I’m sticking with this combo.
I’ve also come off my Zoloft dose which I went up to 150 mgs, I weaned off very slowly as to not get the horrible side effects of stopping an SSRI.
This may not be a fix for everyone but for me it’s given me my life back.
I’d recommend getting a test for MTHFR or methylation levels and even Zinc/Copper deficiency, you might need to see a naturopath to organize it.

Best of luck with your journey, it’s a tough road but one I strongly believe will come to an end.


Posted by @colleenyoung, Jan 1, 2016

Hi @Gavin,
Thanks for sharing your story. Successes are important to share. You obviously worked as a partner with your care providers to find answers. Coming off SSRIs slowly is also very wise.

Does your doctor recommend taking your current combination of treatment long term?


Posted by @Gavin, Jan 2, 2016

Hi Colleen, I actually haven't been back to my doctor since feeling better, and coming off the SSRI was a decision I made myself and tapered off myself after doing my own research (I know this is not recommended to do yourself but it's hardly rocket science, I just did it very slowly and never experienced any major side effects) However I think I've been one of the lucky ones after reading many horrible reviews about stopping SSRI's. The combo I'm taking is a small dose of L-methionine, a 50 mg zinc and a magnesium tablet. Like I said in the previous post I have no idea which one has helped me and I have no idea if it will help anyone else but if it helps one person than i'm happy because it really was ruining my life. I'm no doctor but I'd imagine the combo I'm taking is far better than 150mgs of zoloft daily.


Posted by @turkeyhead13, Mar 3, 2016

I have the same symptoms and diagnosis, was wondering if anyone else had plastic PEX water pipes installed your home prior to your symptoms starting? Ive tried to rule out everything looking for the cure. Thanks....Jon


Posted by @purvissp, Mar 3, 2016

I have had this dizziness/anxiety for over 6 years now. Been all over the country to major hospitals with no luck. Went to Mayo (Dr Stabb) in 2014 and was diagnosed with CDS. I did all the exercises and no help. I kept in contact with him and he suggested trying several SSRI and NSRI's to get relief. I did try 7-8 of the drugs he recommended with not help. He then suggested seeing a psychologist for CBT. I have been seing the psychologist for almost 2 years now and really the dizziness and anxiety are still not good.

Benzodiazepine Warning -----

During the course of trying to find help in about 2011 my family doctor prescibed clonazepam 0.5mg/day. It did not help the dizziness much, but did help the anxiety. But the bad part is after taking for a while you build up a tolerance and require a larger dose. My family doctor kept raising my dose until early 2014 I was on 8mg/day. At that dose I pretty much slept all the time. In March 2015 I had some kind of seizure, fell out of bed in the night and found I could not stand up. My wife took me to the ER and they admitted me to the hospital. The doctors at the hospital were astonished the my doctor had gotten me on an extremely high dose and told me I must start tapering of the clonazepam. I immediately changed family doctors and started tapering off the drug. These drugs have to tapered very slowly to avoid seizures of terrible withdrawal symptoms. I have now been tapering 1 year now and down to .5mg/day, but has been extremely hard and the withdrawal symptoms along with the dizziness is awful and I have at least 6 more months to taper off this terrible drug.

I am not sure how the CDS will be once I taper of the clonazepam, but I guess I will just have to deal with that when I am done tapering.

Please be careful of all benzodazepines. They are good for some things, but should only be used in low doses for short periods of time. Google benzodiazepines and read the warnings.

Hope some day there will be some help or relief from CDS.


Posted by @william77, Mar 3, 2016

I have had this problem for some time. I have been through many
unsuccessful therapies ect. Nothing helps, doctors tell me it's anxiety,
it's not, I gave up. I suffer silently. Slowly going mad

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