Chronic Subjective Dizziness-CSD
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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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.
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
Did the Serc help your dizziness?
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.
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.
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
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!
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 />
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