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Chronic Subjective Dizziness-CSD
Ear, Nose & Throat (ENT) | Last Active: Jan 28, 2023 | Replies (72)Comment receiving replies
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.
Replies to "I have been suffering since 9-13-2013. I was driving on the freeway with a friend in..."
I know that accepting the diagnosis of CSD is more than difficult. I<br />
developed it in January 2011 and wasn\'t diagnosed officially until August<br />
of 2014.<br />
<br />
I have had all sorts of diagnosis along the way, but what I am sure of is<br />
that CSD is like an add on disease. It does not exist alone. If doctors<br />
find nothing damaged in your vestibular system it doesn\'t mean nothing is<br />
affecting it. I have vestibular migraines that the CSD uses to amplify<br />
itself and flare up. There was no test for this type of migraine except to<br />
treat for it and see if my described symptoms improved.<br />
<br />
When medication is involved, trying one medication may not be the solution.<br />
Everyone\'s brain chemistry is different so not all medications are a<br />
perfect fit for everyone. Klonopin is not generally proven to be the best<br />
solution for CSD. You should contact Dr. Shepherd about the current<br />
medications used for CSD patients. You also need to remember medication is<br />
not a cure but a method to manage.<br />
<br />
CSD is always accompanied by other diseases be they physical or<br />
psychological. Those diseases have to be treated as well because CSD uses<br />
them to \"feed\" on if you will and \"flare\" up. I can tell you that CSD<br />
appears to come out of nowhere, but that is never the case once it\'s been<br />
figured out for a person (if it really is ever figured out).<br />
<br />
I have it mostly figured out for myself with a lot of help and I can\'t work<br />
right now. CSD has changed the way I live my life, but I still have a life.<br />
<br />
If you choose the victim stance you will be miserable. If you choose to<br />
live and fight for every step you will feel the strife of fighting to live<br />
your life the way you want, but you get to live and not just some shell of<br />
a life.<br />
<br />
Keep looking for your solution!<br />
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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.