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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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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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1 ReactionAlso 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
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.
does alprazolam last longer than klonopin?
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.
>
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.