Chronic Subjective Dizziness-CSD

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.

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.

I know that accepting the diagnosis of CSD is more than difficult. I<br />
developed it in January 2011 and wasn\'t diagnosed officially until August<br />
of 2014.<br />
<br />
I have had all sorts of diagnosis along the way, but what I am sure of is<br />
that CSD is like an add on disease. It does not exist alone. If doctors<br />
find nothing damaged in your vestibular system it doesn\'t mean nothing is<br />
affecting it. I have vestibular migraines that the CSD uses to amplify<br />
itself and flare up. There was no test for this type of migraine except to<br />
treat for it and see if my described symptoms improved.<br />
<br />
When medication is involved, trying one medication may not be the solution.<br />
Everyone\'s brain chemistry is different so not all medications are a<br />
perfect fit for everyone. Klonopin is not generally proven to be the best<br />
solution for CSD. You should contact Dr. Shepherd about the current<br />
medications used for CSD patients. You also need to remember medication is<br />
not a cure but a method to manage.<br />
<br />
CSD is always accompanied by other diseases be they physical or<br />
psychological. Those diseases have to be treated as well because CSD uses<br />
them to \"feed\" on if you will and \"flare\" up. I can tell you that CSD<br />
appears to come out of nowhere, but that is never the case once it\'s been<br />
figured out for a person (if it really is ever figured out).<br />
<br />
I have it mostly figured out for myself with a lot of help and I can\'t work<br />
right now. CSD has changed the way I live my life, but I still have a life.<br />
<br />
If you choose the victim stance you will be miserable. If you choose to<br />
live and fight for every step you will feel the strife of fighting to live<br />
your life the way you want, but you get to live and not just some shell of<br />
a life.<br />
<br />
Keep looking for your solution!<br />

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?

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.

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

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.

I have had this problem for some time. I have been through many<br />
unsuccessful therapies ect. Nothing helps, doctors tell me it's anxiety,<br />
it's not, I gave up. I suffer silently. Slowly going mad<br />

Hi:
I also have dizziness since 2013 and I have been all over looking for an answer. Can you tell me what kind of zinc you are taking, there are different zinc.
I was told that my zinc is low but nobody ever advise me to take zinc. I also know that my copper was high in 2013. I was swimming in a pool that had to much copper but that was taken care of. (The Pool). Thanks