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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@purvissp

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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What is CSD?? I have CIRS, and ur comment appeared under that Subject.
TY, Valerie

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Several years ago, I suffered terribly with CSD when I suddenly lost 50% of the hearing in my left ear. I now have 20% use of it. Having a hearing aid did nothing, and I had two motion migraines a day, sleeping the first one off and developing another by evening. I couldn't work, horribly dizzy, especially indoors or places without a vista to see that the world was not tipping like the deck of a ship when moving my head. In case it helps anyone, Mayo gave me vestibular eye exercises to do that have helped tremendously. At first they thought I had a mild case but the physical therapist quickly realized it was severe. (Unfortunately I am prone to motion sickness by nature.) It took me about 10 months to have the exercises work to their fullest effect. WORTH the effort. They said the average time was about a year and a half, but I did them 6 days a week and at odd opportunities that would arise. Now I'm much better, not 100%, but can do what I want to do, AND I no longer get motion sick in the car or plane. In fact I can read a book in a car-astounding for me. Exercises: "Window Shopping" - which is walking slowly and moving your eyes up and down, and around like you're looking at what there is to see in detail - bushes and trees on a walk, pictures or door trim on walls, groceries in the store, etc. When you sense that your body/head feels that awful dizzy feeling, STOP IMMEDIATELY! Then stand and look at something far away that isn't moving and let your brain recover from that awful feeling and learn that the earth is not moving. In this way you are bit by bit training your brain that the dizzy feeling is not real and the earth isn't moving. You brain slowly adapts through this learning. Any place you can walk slowly will work. Then if emptying the dishwasher, or on the computer, packing in a closet, shopping or wherever you get that bad dizzy feeling, STOP, stand still and give your brain time to settle itself by looking at something NOT moving in the distance. I found if I got outside in the mornings the dizziness wasn't so bad because there was a still vista that helped. Playing golf I still sometimes feel like I'm tipping over and have to take a step after a swing, BUT you have to keep doing the things that can make you dizzy, you just have to STOP and settle your brain when it happens. There are other exercises like staring into a striped umbrella while it turns to bring on the dizzy, STOP, and let your brain recover, and repeat. Then go a bit longer, and after a few weeks the twirling umbrella no longer makes you dizzy. You can stop when the exercise no longer makes you ill. The physical therapist told me any head moving activity (golf, empty dishwasher, working in a closet, computer, bending over) that I needed to continue them, because if I quit, I'd have to get used to the movements all over again. So I began welcoming that awful feeling, stopping right away, and making it go away because that scenario was training my brain NOT to be dizzy. The PT told me when I can "window shop" for 40 minutes without getting dizzy, the exercise can be stopped.
Also I took trazodone for sleep and was sick for 3 months - the darn stuff says "may cause dizziness" and ANY medication at all that says that I avoid. When I quit Trazodone (stupid idea anyway) the dizziness was gone in a day. Real all medication labels and be sure something you're taking isn't aggravating CSD.

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