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.

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) group.

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 .

REPLY

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.

Jump to this post

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.

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.

Jump to this post

I went to Mayo Clinic in Rochester Minnesota.

REPLY

Hello Dizzydude. I have had similar experiences since having a severe sinus infection in 2009. For several months I had daily dizziness and problems with visual stimuli, as well as a sensation of fluid and fullness in my left ear, and then the symptoms suddenly disappeared.

For three years symptoms were almost absent, but they returned with a vengeance, again after a sinus infection, in July 2012. I have been tested for Meniere’s disease, which has been eliminated as a cause, and have seen a neurologist, who suspects migraines may be implicated. I definitely get cervicogenic headaches from time to time, but do not think the dizziness is migraine-related; migraine medications have not relieved it at all. None of the ENTs, nor the neurologist, I have seen, feel that my sinus or ear problems have much, if anything, to do with my dizziness, but I do.

I too have a history of anxiety problems and am quite aware that I get caught in a vicious circle of dizziness and anxiety feeding upon one another. Doctors have generally just told me “you need to deal with your anxiety.” I see a therapist weekly, but she does not know specific techniques to help with this problem. I found Dr. Jeffrey Staab and his colleagues’ research online and realized that Chronic Subjective Dizziness was exactly what I was experiencing. I am fortunate to be in MN, and am going to the psychiatry clinic at Mayo, where Dr. Staab now practices, later in the month. For the first time since last July I feel like there is some hope for a correct diagnosis and treatment that might actually help me. If you are the kind of person who is able to read such things, there are a number of articles and studies accessible online by Dr. Staab and his former colleague at Penn, Michael J. Ruckenstein, which discuss the disorder and might be enlightening for you.
http://mayoresearch.mayo.edu/mayo/research/staff/Staab_JP.cfm
I am a primarily self-employed in fine art and commercial photography, and this illness has been devastating on my professional life over the past eight months. Colleagues and even friends do not understand how debilitating this is; even on days when I do not feel dizzy the “brainfog” is usually present, and it has prevented me from being able to work at times, but also to look for work or do billing or accounting related to self-employment, so, I am now at the point where no calls for work are coming in. I do have two very part-time jobs that are very low-stress and that I have been able to continue. But it is only because I had money in savings and am a resourceful person who lives fairly simply that I am not completely impoverished after eight months of almost no work.

It helps to know about this diagnosis/condition to to read of other people who have experienced it. There have definitely been days in recent months when I simply thought I was losing my mind, and yet I felt in my gut that there was some underlying physiological issue, because this was so unlike any other symptom I had encountered in 30 years of living with anxiety.

Best of luck to you in finding an effective treatment.

REPLY
@gengenevieve

Hello Dizzydude. I have had similar experiences since having a severe sinus infection in 2009. For several months I had daily dizziness and problems with visual stimuli, as well as a sensation of fluid and fullness in my left ear, and then the symptoms suddenly disappeared.

For three years symptoms were almost absent, but they returned with a vengeance, again after a sinus infection, in July 2012. I have been tested for Meniere’s disease, which has been eliminated as a cause, and have seen a neurologist, who suspects migraines may be implicated. I definitely get cervicogenic headaches from time to time, but do not think the dizziness is migraine-related; migraine medications have not relieved it at all. None of the ENTs, nor the neurologist, I have seen, feel that my sinus or ear problems have much, if anything, to do with my dizziness, but I do.

I too have a history of anxiety problems and am quite aware that I get caught in a vicious circle of dizziness and anxiety feeding upon one another. Doctors have generally just told me “you need to deal with your anxiety.” I see a therapist weekly, but she does not know specific techniques to help with this problem. I found Dr. Jeffrey Staab and his colleagues’ research online and realized that Chronic Subjective Dizziness was exactly what I was experiencing. I am fortunate to be in MN, and am going to the psychiatry clinic at Mayo, where Dr. Staab now practices, later in the month. For the first time since last July I feel like there is some hope for a correct diagnosis and treatment that might actually help me. If you are the kind of person who is able to read such things, there are a number of articles and studies accessible online by Dr. Staab and his former colleague at Penn, Michael J. Ruckenstein, which discuss the disorder and might be enlightening for you.
http://mayoresearch.mayo.edu/mayo/research/staff/Staab_JP.cfm
I am a primarily self-employed in fine art and commercial photography, and this illness has been devastating on my professional life over the past eight months. Colleagues and even friends do not understand how debilitating this is; even on days when I do not feel dizzy the “brainfog” is usually present, and it has prevented me from being able to work at times, but also to look for work or do billing or accounting related to self-employment, so, I am now at the point where no calls for work are coming in. I do have two very part-time jobs that are very low-stress and that I have been able to continue. But it is only because I had money in savings and am a resourceful person who lives fairly simply that I am not completely impoverished after eight months of almost no work.

It helps to know about this diagnosis/condition to to read of other people who have experienced it. There have definitely been days in recent months when I simply thought I was losing my mind, and yet I felt in my gut that there was some underlying physiological issue, because this was so unlike any other symptom I had encountered in 30 years of living with anxiety.

Best of luck to you in finding an effective treatment.

Jump to this post

Sorry to hear that….I have the same smptoms for over 7 years…i’m about to apply for long term disibility from work… have seen dorctors from Barrows and Mayo Clinic and both have tell me that same thing…. Vestibular disorder.and it all started with chronic sinus infections…Good Luck…

REPLY

I’ve had it eight years, following a concussion and then sinus polyps with infection.
I’ve read it called Migraine-Associated Vertigo, which doesn’t require a headache and isn’t ruled out just because migraine drugs didn’t work.
QUESTION TO ALL WHO HAVE THIS: Do you ever have high readings of Eosinophils in blood tests? (It’s a theory I’m working on…)

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.

Jump to this post

Clonazepam is shown particularly effective among the benzo’s in fighting migraine, which is what this probably is.

REPLY
@dizzydude

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!

Jump to this post

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.

REPLY
@gengenevieve

Hello Dizzydude. I have had similar experiences since having a severe sinus infection in 2009. For several months I had daily dizziness and problems with visual stimuli, as well as a sensation of fluid and fullness in my left ear, and then the symptoms suddenly disappeared.

For three years symptoms were almost absent, but they returned with a vengeance, again after a sinus infection, in July 2012. I have been tested for Meniere’s disease, which has been eliminated as a cause, and have seen a neurologist, who suspects migraines may be implicated. I definitely get cervicogenic headaches from time to time, but do not think the dizziness is migraine-related; migraine medications have not relieved it at all. None of the ENTs, nor the neurologist, I have seen, feel that my sinus or ear problems have much, if anything, to do with my dizziness, but I do.

I too have a history of anxiety problems and am quite aware that I get caught in a vicious circle of dizziness and anxiety feeding upon one another. Doctors have generally just told me “you need to deal with your anxiety.” I see a therapist weekly, but she does not know specific techniques to help with this problem. I found Dr. Jeffrey Staab and his colleagues’ research online and realized that Chronic Subjective Dizziness was exactly what I was experiencing. I am fortunate to be in MN, and am going to the psychiatry clinic at Mayo, where Dr. Staab now practices, later in the month. For the first time since last July I feel like there is some hope for a correct diagnosis and treatment that might actually help me. If you are the kind of person who is able to read such things, there are a number of articles and studies accessible online by Dr. Staab and his former colleague at Penn, Michael J. Ruckenstein, which discuss the disorder and might be enlightening for you.
http://mayoresearch.mayo.edu/mayo/research/staff/Staab_JP.cfm
I am a primarily self-employed in fine art and commercial photography, and this illness has been devastating on my professional life over the past eight months. Colleagues and even friends do not understand how debilitating this is; even on days when I do not feel dizzy the “brainfog” is usually present, and it has prevented me from being able to work at times, but also to look for work or do billing or accounting related to self-employment, so, I am now at the point where no calls for work are coming in. I do have two very part-time jobs that are very low-stress and that I have been able to continue. But it is only because I had money in savings and am a resourceful person who lives fairly simply that I am not completely impoverished after eight months of almost no work.

It helps to know about this diagnosis/condition to to read of other people who have experienced it. There have definitely been days in recent months when I simply thought I was losing my mind, and yet I felt in my gut that there was some underlying physiological issue, because this was so unlike any other symptom I had encountered in 30 years of living with anxiety.

Best of luck to you in finding an effective treatment.

Jump to this post

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

REPLY
@dizzydude

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!

Jump to this post

Did the Serc help your dizziness?

REPLY
@cannonr

I’ve had it eight years, following a concussion and then sinus polyps with infection.
I’ve read it called Migraine-Associated Vertigo, which doesn’t require a headache and isn’t ruled out just because migraine drugs didn’t work.
QUESTION TO ALL WHO HAVE THIS: Do you ever have high readings of Eosinophils in blood tests? (It’s a theory I’m working on…)

Jump to this post

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.

REPLY
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