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.

@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 Clinic in Rochester Minnesota.

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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.

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@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.

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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…

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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…)

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

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@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!

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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.

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@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.

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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

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@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!

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Did the Serc help your dizziness?

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@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…)

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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.

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@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…)

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That’s interesting. Since I posted this a few months ago, I have found that there is a syndrome caused by an incorrect immune response to biotoxins. This can include things like Lyme disease and ciguatera from fish, but most commonly is from a reaction to molds that grow in buildings that are water damaged. It is not mold allergy, nor is it “toxic mold” that you hear about it. There are numerous molds that can cause it, and they all grow out of control in nice air-conditioned environments when there’s water leakage. It’s not an allergy, it’s an innate immune dysfunction.
Irate as I get about subjective diagnoses, the nice part about this syndrome is that there are definitive blood tests to check for the immune responses that are a part of it. There are 9 blood tests, and the most that normal ppl will test positive for is 3 (it’s usually 0 or 1), and the fewest that people with Biotoxin Illness will have is 4, but it’s usually more. I had 7.
The syndrome affects multiple systems in the body, so it’s not “in your head” and you aren’t a hypochondriac. Dizziness, vertigo, headaches, and symptoms typically associated with migraine are all part of it.
The nice part is that it’s quite treatable, they have had tremendous success. The technical name for it is Chronic Inflammatory Response Syndrome (CIRS), but it’s also known as Biotoxin Illness.
This site is very good for understanding the syndrome: http://www.survivingmold.com/diagnosis
The site was made by the parents of some children who had the disease and were treated successfully, and they wanted to help others. There’s no magic snake oil formula to buy, it’s a treatment protocol that uses drugs very commonly used for other diseases.
The first step is to get out of the water-damaged building. 60% of patients feel better just from that. The next step is to take a medicine called Cholestyramine, which is a cholestrol medicine originally but binds to the mold fragments circulating in the blood/bile that stimulate the incorrect immune response.
I have improved greatly since starting this therapy. I am rarely dizzy any more.
Good luck to everyone, feel free to reply/msg me if you want more info.

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Please see the post I wrote a few lines down about Chronic Inflammatory Response Syndrome (also known as Biotoxin Illness). This was what was wrong with me, and odds are it may be what’s wrong with you too. It’s not all in your mind.
This describes it: http://www.survivingmold.com/diagnosis
Be sure to look at this list of 37 possible symptoms. Normal people may have 4 or 5, biotoxin illness patients average 21, I had 27. http://www.survivingmold.com/mold-symptoms

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I have most of you beat. I’ve had CSD for over 8 years now. Its everyday and i feel everything everyone is talking about! Not happy to hear you guys have these issues but glad im not the only one. I’ve been everywhere and im out of options at this point even tried hypnotism. Did not even phase me. No medications or therapy do anything except make me worse. Wake up with it and go to sleep with it. Like i said i had it for over eight years. not sure how old any of you are but im 18. Ive had this since i was 10. I went to mayo and saw Staab in 2012? I feel all of your pain and hope your not a lost case like i am.

Wanted to share my story best of luck to you all!

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@lilbobber15

I have most of you beat. I’ve had CSD for over 8 years now. Its everyday and i feel everything everyone is talking about! Not happy to hear you guys have these issues but glad im not the only one. I’ve been everywhere and im out of options at this point even tried hypnotism. Did not even phase me. No medications or therapy do anything except make me worse. Wake up with it and go to sleep with it. Like i said i had it for over eight years. not sure how old any of you are but im 18. Ive had this since i was 10. I went to mayo and saw Staab in 2012? I feel all of your pain and hope your not a lost case like i am.

Wanted to share my story best of luck to you all!

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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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@lilbobber15

I have most of you beat. I’ve had CSD for over 8 years now. Its everyday and i feel everything everyone is talking about! Not happy to hear you guys have these issues but glad im not the only one. I’ve been everywhere and im out of options at this point even tried hypnotism. Did not even phase me. No medications or therapy do anything except make me worse. Wake up with it and go to sleep with it. Like i said i had it for over eight years. not sure how old any of you are but im 18. Ive had this since i was 10. I went to mayo and saw Staab in 2012? I feel all of your pain and hope your not a lost case like i am.

Wanted to share my story best of luck to you all!

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I haven’t commented on this site for quite a while now as I’m tired of not getting any answers to this problem after years of looking for an answer. Fortunately for me I have gotten used to feeling this way, if you ever really get used to it. I continue to take Clonazepam which helps with the anxiety this can cause, and started doing all the things I used to do, but had stopped the first couple years. Things like taking walks aren’t as fun now, but I do them anyway. In the meantime I will continue to wait for some good news on a cure.

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@lilbobber15

I have most of you beat. I’ve had CSD for over 8 years now. Its everyday and i feel everything everyone is talking about! Not happy to hear you guys have these issues but glad im not the only one. I’ve been everywhere and im out of options at this point even tried hypnotism. Did not even phase me. No medications or therapy do anything except make me worse. Wake up with it and go to sleep with it. Like i said i had it for over eight years. not sure how old any of you are but im 18. Ive had this since i was 10. I went to mayo and saw Staab in 2012? I feel all of your pain and hope your not a lost case like i am.

Wanted to share my story best of luck to you all!

Jump to this post

I\’ve had some success with this after being treated for biotoxin (mold)
illness. The illness affects hormone levels, specifically Melanocyte
Stimulating Hormone (MSH), Anti-diuretic hormone (ADH), and Vasoactive
Intestinal Polypeptide (VIP) among others. Those in particular affect
the pituitary and hypothalamus glands, which seem to be related to the
dizziness issue.

There are a couple simple blood tests you can do at Quest that point to
BTI. Check for MSH because if that\’s low there\’s a very good chance
that this deficiency is what is causing your complaint. MSH is
instrumental in the body being able to regulate its processes.

The question then is why is MSH low. If it\’s biotoxin illness, you can
tell if you are still being exposed by checking your blood levels of C4a
(Complement 4-a) and C3a (Complement 3-a). The first will be high if
mold is the cause of your problem, the second will be high if it\’s
post-Lyme disease. Mine personally was high in C4a, C3a normal.

If you do that test, make sure they are testing for C4a, not C4. C4 is
a more common test because it\’s related to things like cancer diagnosis
but it doesn\’t show anything related to biotoxin illness. Also, from
what I have heard, Quest does a better test for this than LabCorp.

My C4a was at 15000, and norm is under 2800. After a ridiculous amount
of mold remediation and treatment for 4 months with Cholestyramine,
these levels for me are now down to 2300, within range.

From what I can deduce, migraine is comorbid for the CSD, and may even
be the same condition. But what causes the migraine is key, and for me
it\’s almost certainly exposure to biotoxins (specifically mold in my case).

All it takes is one water leak that lasts for more than 48 hours
interrupted, and mold will grow there. If you are genetically
predisposed, like me, then your body begins a fight that it\’s literally
incapable of winning and will destroy itself in the process. CSD for me
was just one symptom of this systemic disease.

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