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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@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 have known allergies and took super high doses of nasal sprays. Nothing happened at all. I just live with it now. It sucks but everything happens for a reason and you can’t let it get in the way of life. Somebody somewhere has it worse.

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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 started with sporadic symptoms 2 1/2 years ago. The dizziness became constant about a year ago. I’ve run the whole gauntlet of doctors and diagnoses. It’s just in the last few weeks I’ve learned of CDS, and it certainly fits with what I’m dealing with. The doctors have been treating me for “migraine with vestibular dysfunction”. I definitely have migraine issues, and some of the medicines have helped with the dizziness. But all the ones that have been effective (of course they’re all antidepressants of some type) make me unable to sleep. As in 4 hours a night of sleep on average.

There’s a doctor nearby that specializes in CSD. She’s board certified in neurology and psychiatry. My appointment is in about a month and I can’t wait to see her.

One thing that has really helped me is allergy shots. Things have been the worst in the spring and fall, times when my allergies are at their worst. The shots have definitely helped. Also, PT for balance helped A LOT!

All that being said, I refuse to give up. I have two young kids and refuse to accept that I can’t play ball with them. Or taking them skiing some day. Or ride bikes with them. There are so many fun things in our future. I refuse to let CSD rob me or them of those experiences.

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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 know what you are going through. My dizziness started over 5 years ago and I have been all over, Johns Hopkins, Cleveland Clinic and even Mayo’s (Dr, Staab) in 2012. Been to many other ENT’s, Neurologist, Allergist, acupuncturist and even a Psychologist. Had every kind of test MRI, MRA, ear tests. Taken all kinds of drugs. None of the drugs helped and some even had side effects worse than the original dizziness. The dizziness has progressively just gotten worse to where it now has a serious impact on my life. Can not do many of the things I used to enjoy.

If you or anyone ever find something that helps please post what it is. I have just gotten tired of going to new doctors with no help or improvement.

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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 am going to have my doctor run these tests. So far the only thing that she has ran is B12 and D which I am very low. I also have Lupus but so far it is only on my skin. My dermatologist tests me for full blown lupus and keeps saying that I am fine with that. I hope my doctor agrees to run the tests. I go in January.

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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.

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@jackiewoody

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.

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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.

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@jackiewoody

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.

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I know that accepting the diagnosis of CSD is more than difficult. I
developed it in January 2011 and wasn\’t diagnosed officially until August
of 2014.

I have had all sorts of diagnosis along the way, but what I am sure of is
that CSD is like an add on disease. It does not exist alone. If doctors
find nothing damaged in your vestibular system it doesn\’t mean nothing is
affecting it. I have vestibular migraines that the CSD uses to amplify
itself and flare up. There was no test for this type of migraine except to
treat for it and see if my described symptoms improved.

When medication is involved, trying one medication may not be the solution.
Everyone\’s brain chemistry is different so not all medications are a
perfect fit for everyone. Klonopin is not generally proven to be the best
solution for CSD. You should contact Dr. Shepherd about the current
medications used for CSD patients. You also need to remember medication is
not a cure but a method to manage.

CSD is always accompanied by other diseases be they physical or
psychological. Those diseases have to be treated as well because CSD uses
them to \”feed\” on if you will and \”flare\” up. I can tell you that CSD
appears to come out of nowhere, but that is never the case once it\’s been
figured out for a person (if it really is ever figured out).

I have it mostly figured out for myself with a lot of help and I can\’t work
right now. CSD has changed the way I live my life, but I still have a life.

If you choose the victim stance you will be miserable. If you choose to
live and fight for every step you will feel the strife of fighting to live
your life the way you want, but you get to live and not just some shell of
a life.

Keep looking for your solution!

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My Story,
I made a promise to myself a long time ago that if I ever beat this CSD than I would tell my story and how I dealt with it. As when I was in the midst of this hell it was rare to come across any success stories or hope.
For me it started on the 16th December 2013, where out of nowhere I had what I would later learn was a panic attack. The panic attack only lasted for a few minutes but a residual dizziness sensation stayed with me permanently, some days really severe and other times quite mild but always there. I guess sometimes if I was really busy doing something fun I would forget about it for a while.
I had all the tests you can name and think of and as nearly everyone else says they all came back normal.
In the early stages I’d notice it as soon as I’d get up in the morning and it would stay with me all day until I went to bed. The first six months I was dizzy but no other symptoms to speak of, I kept reading how it could be anxiety related but I didn’t even know what anxiety was and didn’t think I had it. At around the seven month mark this all changed as after seeing a doctor he advised me that I had developed an anxiety disorder from dealing with all of this.
He prescribed me Pristiq which I came home and took 1 tablet and from that moment on my dizziness turned in to a nightmare, I think adding this drug to my system caused what levels of anxiety that I had to go crazy and along with it my dizziness. I only ever took one Pristiq as I nearly topped myself from the panic it caused but after that I went on Lexapro for 6 months and then Zoloft for about 8 months going up and down dosages trying to find some magic dose. I had 8 weeks off work after the day I had my first SSRI, it was the toughest time I’ve had in my life.
I’m not convinced any of these helped me much at all but I do believe they may work for others they just didn’t do a great deal for me in regards to fixing the dizziness and disequilibrium.
So as time went on I still kept searching for answers and trying every alternative therapy under the sun.
I stumbled upon an article about the MTHFR gene which I did a bit of research into and got a test done, turns out I didn’t have this gene however we worked out that I was undermethylated.
Have a quick search of the symptoms of undermethylation (histadelia) on the net and you’ll find the symptoms are quite common amongst this group of CSD sufferers who generally have over active brains etc
The doctor I saw told me to buy some L-methionine which is an essential amino acid (I got mine from IHerb, quite cheap) I also have this with a zinc tablet and a magnesium tablet every morning.
The last 4-5 months have been basically dizzy free for me, after about a month on this combo I noticed it was just gone, even in really stressful situations where my dizziness previously would be high it’s just not there anymore. I have no idea which one of these has fixed my dizziness issue but whatever it is I’m sticking with this combo.
I’ve also come off my Zoloft dose which I went up to 150 mgs, I weaned off very slowly as to not get the horrible side effects of stopping an SSRI.
This may not be a fix for everyone but for me it’s given me my life back.
I’d recommend getting a test for MTHFR or methylation levels and even Zinc/Copper deficiency, you might need to see a naturopath to organize it.

Best of luck with your journey, it’s a tough road but one I strongly believe will come to an end.
Gavin

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Hi @Gavin,
Thanks for sharing your story. Successes are important to share. You obviously worked as a partner with your care providers to find answers. Coming off SSRIs slowly is also very wise.

Does your doctor recommend taking your current combination of treatment long term?

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Hi Colleen, I actually haven’t been back to my doctor since feeling better, and coming off the SSRI was a decision I made myself and tapered off myself after doing my own research (I know this is not recommended to do yourself but it’s hardly rocket science, I just did it very slowly and never experienced any major side effects) However I think I’ve been one of the lucky ones after reading many horrible reviews about stopping SSRI’s. The combo I’m taking is a small dose of L-methionine, a 50 mg zinc and a magnesium tablet. Like I said in the previous post I have no idea which one has helped me and I have no idea if it will help anyone else but if it helps one person than i’m happy because it really was ruining my life. I’m no doctor but I’d imagine the combo I’m taking is far better than 150mgs of zoloft daily.

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I have the same symptoms and diagnosis, was wondering if anyone else had plastic PEX water pipes installed your home prior to your symptoms starting? Ive tried to rule out everything looking for the cure. Thanks….Jon

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I have had this dizziness/anxiety for over 6 years now. Been all over the country to major hospitals with no luck. Went to Mayo (Dr Stabb) in 2014 and was diagnosed with CDS. I did all the exercises and no help. I kept in contact with him and he suggested trying several SSRI and NSRI’s to get relief. I did try 7-8 of the drugs he recommended with not help. He then suggested seeing a psychologist for CBT. I have been seing the psychologist for almost 2 years now and really the dizziness and anxiety are still not good.

Benzodiazepine Warning —–

During the course of trying to find help in about 2011 my family doctor prescibed clonazepam 0.5mg/day. It did not help the dizziness much, but did help the anxiety. But the bad part is after taking for a while you build up a tolerance and require a larger dose. My family doctor kept raising my dose until early 2014 I was on 8mg/day. At that dose I pretty much slept all the time. In March 2015 I had some kind of seizure, fell out of bed in the night and found I could not stand up. My wife took me to the ER and they admitted me to the hospital. The doctors at the hospital were astonished the my doctor had gotten me on an extremely high dose and told me I must start tapering of the clonazepam. I immediately changed family doctors and started tapering off the drug. These drugs have to tapered very slowly to avoid seizures of terrible withdrawal symptoms. I have now been tapering 1 year now and down to .5mg/day, but has been extremely hard and the withdrawal symptoms along with the dizziness is awful and I have at least 6 more months to taper off this terrible drug.

I am not sure how the CDS will be once I taper of the clonazepam, but I guess I will just have to deal with that when I am done tapering.

Please be careful of all benzodazepines. They are good for some things, but should only be used in low doses for short periods of time. Google benzodiazepines and read the warnings.

Hope some day there will be some help or relief from CDS.

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