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.

@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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Have you worked with a psychologist and psychiatrist? I ask because CSD feeds on emotional and biological feedback to the brain. For example if when you first experienced your CSD symptoms you had been pretty stressed about what ever. The next time you experience levels of stress comparable to the first occurrence CSD will act up. I know what you’re thinking…..CSD is stressful! And you are so right!

CSD can have many triggers and if you’re not working with someone to help you sort out the triggers (psychologist) and someone to regulate meds for anxiety it creates (psychiatrist) then those are things you can do to help yourself. CSD will control you if you let it. But,you have the ability to live a life where your illness doesn’t define you or control your every moment.

I was 25 when my CSD started. I saw every doctor in the area. That was 2011. I got a diagnosis that Mayo was to confirm in the fall of 2013. My appointment wasn’t until August 2014. I’m going to be 29 in a few weeks, and I thought CSD had ruined my life. But really this disease has saved me. We found out I have major depression and it runs in the family. We found out the anxiety ran in my family. We found out I have vestibular migraines that trigger and intensify my CSD. We found non conventional ways to help me work on my balance and panic. I personally work with dogs. I also research CSD and keep myself up to date.

You can’t hope for a miracle pill. CSD is complex and as individual as each of us are. You have to choose to beat it! Your brain is powerful use it against itself!

@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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Also chronic exposure to high levels of biological triggers like mold
can cause the immune system in some people to go crazy and not turn
off. It will use up hormones that are necessary to regulate
fight/flight hormones.

Before you decide that you need to go the psychiatrist / anxiety med
route, get some blood tests and see whether these are out of whack:

Complement 3a (C3a): high in post-Lyme disease (normal if mold is trigger)
Complement 4a (C4a): high in mold illness (these are not to be confused
with C3 or C4)
Human Transforming Growth Hormone Beta-1 (TGF-B1): high, linked with
asthma / sinus polyps
Melanocyte Stimulating Hormone (MSH): low, will cause abnormal
fight/flight responses, insomnia, lots of other problems
Anti-Diuretic Hormone (ADH) aka Arginine Vasopressin (AVP): low, leads
to frequent urination/dehydration, as well as fight/flight issues
Vasoactive Intestinal Polypeptide (VIP) : low, often the key to feeling
better after these bio illnesses

You owe it to yourself to get better not just put on a bandaid. If it
is in your head then fine, but if you are really sick you\’ll have other
health problems arise eventually. These blood tests are available at
either Quest or LabCorp, and insurance will usually pay for them.

If you are high in C4a, then you are probably living in a moldy
environment. Simply cleaning it up (not always easy) or moving to a new
place may make you feel 100% better.

I had every symptom under the sun. I used to take 1mg clonazepam a day,
but now I am down to a trace (0.0625 mg). My levels on these blood
tests were off the charts, but by going ballistic on my home and
following some of the therapies for biotoxin illness, I am way better
now. My blood tests are normal, and most of my symptoms are going away.

Good luck, I\’m happy to answer any questions if it helps anyone.

@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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@robert

What do you mean everything? I can believe in no complete cure but nothing has given any relief? I’m 29 and this started when I was 25. Now, I’m a bit older than you, but I am refusing to give up. I work with multiple professionals and I’ve been to Mayo to confirm my diagnosis, but I keep trying new things. I hate medications, but in my case they are needed. I use one medication to keep calm and help me sleep, one to regulate the seritonin in my brain. I take the third to help with my vestibular migraines and then I make the rest up as I go.

I work with dogs to help me with balance training and exercise. I also increase my dopamine levels by playing with them which helps me combat my depression. They help me teach myself to tolerate noise as I have hyperacusis and no one treats that.

I want to ride a bike but I can’t balance one anymore so I got a bike trainer. It makes me dizzy but I am up to 5minute intervals from 15 seconds.

I guess what’s bugging me is I hear a lot of people that sound like they have given up? Or maybe they haven’t accepted that some things don’t go back to the old normal.

What do you think?

@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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You are correct. I have completely given up for the time being. I\’ve worked at it for 8 years with no luck. I wish you the best in your life and hope you get better. Take care!

Regards,

Robert Caridi
Robert\’s Custom Woodworking

@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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have you been checked for allergies.l my allergies started in 1986 and I kept getting dizzy and had a lot of allergies to dust, dust mites, trees and pollen. might be worth allergy tests.

@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 alprazolam last longer than klonopin?

@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.

>

@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.

@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.

@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.

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.

@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.

@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!

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

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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