Chronic Subjective Dizziness-CSD

Posted by Chester @chester, 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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@cannonr

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…)

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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: http://www.survivingmold.com/diagnosis
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.

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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: http://www.survivingmold.com/diagnosis
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. http://www.survivingmold.com/mold-symptoms

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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!

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@lilbobber15

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!

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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.

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@lilbobber15

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!

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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.

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@lilbobber15

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!

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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.

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@lilbobber15

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!

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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!

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@lilbobber15

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!

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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.

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@lilbobber15

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!

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@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?

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@lilbobber15

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!

Jump to this post

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!

Regards,

Robert Caridi
Robert\’s Custom Woodworking

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@albatross

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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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.

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@albatross

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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does alprazolam last longer than klonopin?

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