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.

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.

Liked by ahall0718, Anonymous

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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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At this point I don’t think the doctor’s know what to do with me other than take the anxiety medication. Fortunately I have been able to drive alright, sitting is definately better than walking. Weather also seems to make a difference. It gets worse on days when weather fronts are moving in, probably the barometric pressure affecting the inner ear is my guess. There sure seem to be a lot of variables to this problem.

Liked by jeffjh, ahall0718

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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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Of the anxiety medication, which one and the dosage are you taking. Just wonder if I should inquire about a longer lasting one instead of the alprazolam ?

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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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I was taking Ativan until January of this year (2012), but it didn’t last very long. I now take Clonazepam 0.5mg which lasts longer. I split the tablet in half and take .25mg when I get up in the morning and again eight hours later. I take the smaller amounts to reduce the sleepiness it causes.

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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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Your note really hits home with me…as I suffer from CSD as well. The weather changes wreak havoc on me!

REPLY
@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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p.s. I have chronic sinus issues too…..like you said…LOTS of variables!

REPLY
@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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I too have sinus problems which probably makes this worse and may even be the original culprit for this. I think a virus infection I had when this all started messed up my vestibular system. I’ve been for the last couple years using a nasal saline rinse once a day which has helped with some of the sinus issues.

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Chester it could be vertigo in which the room spins and you are unable to walk? I have post concussion and vertigo which is part of an inner ear problem that effects balance. I went to a ear nose and throat specialist, however mine was caused by the concussion.

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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 the clonazepam work and are u able to take to every day? My dizziness is unbearable especially with the change in weather. Ive dealt with this for years and im desperate! I take ativan right now, is clon better for allevieting dizziness?

REPLY
@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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I went to mayo and had same diagnosis. Nome of my local docs get it and treat me like im nutz.

REPLY
@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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I don’t know about the clonazepam, I use a small amount of xanax. It seems to cut down on the dizziness, but does not totally take it away. I have not noticed a change in symptoms that coinsides with the weather but I’ll check that. As my post above says, I’ve been dealing with this going on 3 yrs now. Is your situation similar? Which mayo did you go to? Who did you see? Thanks, hope to hear fom you soon.

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I had parodid cancer removed when I was 17. I have been sick, fatigued and in extreem pain ever since. (10 years now). I have been dianosed with everything from CSD, arthritis, deginative disc disease, fibromyalgia, many other pre-cancers, cronic sinus infections, and more. I get sick often. I have seen many specialist, but because of how my insurance works, I can never get a holistic approach to all of this. I’m always working with my diet to try to help. I suffer from PTSD and anxiety. Both the physical and mental aspects of this is waring me thin. How does diet play in to CSD for the rest of you?

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Im experiencing similar problems.Im 57 about 6/7 months ago it started gradually and has got worse.Trying phyical therepy Cant say yet if its helping dont want to do drugs .

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It’s good to hear from others suffering from the same problems. About 6 years ago I had a vertigo attack following an inner ear infection. Although the vertigo subsided quickly, chronic fatigue, brainfog, and “visual vertigo” have been present ever since. After multiple specialists and tests, everything came back negative and no clear diagnosis was found. The symptoms were extremely debilitating and had a signficant impact on my personal and professional life. Without a clear diagnosis, I resorted to identifying trigger factors and avoiding them. I also followed some physician advice and changed my diet to eating more bananas, fibers and other sources of potassium, as well as adding some supplements. I quit alcohol and tobacco altogether, reduced my caffeine intake and increased the amount of physical exercise. One of the physicians prescribed Serc 24mg which had a significant impact. All of these measures have helped me cope with this problem but I still felt that none of them addressed the real source of the problem, but rather its manifestation.

I have always had a history of anxiety. To that extent, some of the physicians recommended seeing a psychologist, which I have been doing for the past 8 months with limited results. Recently I have seen a psychosomatic specialist who suggested a Somatoform Disorder, a diagnosis that has shed some new light into the problem due to my nervous-system medical history with IBS and psoriasis since adolescence. This, together with CSD are the diagnoses that best describe my symptoms.

I would also like to hear from anyone else who has similar experiences.

PS: weather fronts are also tough for me!

REPLY
@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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Clonazepam is related to Ativan. It pretty much does the same thing for me, but lasts twice as long. I’ve been splitting a 0.5mg tablet in two and taking each half about eight hours apart. Taking a full tablet twice a day makes me too tired. I’ve been doing this every day for about a year now.

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