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.

New to this…just came across this term. But I'd like to share my story to possibly get some related feedback. Walking down the street about 5 yrs ago had a vertigo attack. It subsided (the hardcore part) after a week or so. But the dizzy, off balance feeling lasted about 3 months (give or take a week). Saw a doc about 3 days into the hardcore vertigo. Doc ran blood work, never suggested ent. Said to take B12…could be BPPV, but wasn't sure. Month goes by, I get MRI..comes back clean. Two more months, it just kinda disappeared. (Doc was no good, no follow up, insurance hound) Friends found article about vestibular neuritis… sounded close to what I went through..kinda chocked it up to that. Fast forward to Jan 2018…no symptoms at all. Out with a friend walking down street, hardcore vertigo attack that . Went to an ENT two days later..did hearing tests, checked for eye movement… thought it could be BPPV. Sent me home with an anti-inflammatory with steroid (some kind of 6 day cycle thing). After a week I was able to cautiously drive…doc said should realign in a month. 3 months go by and I'm back to the, off balance feeling. Look at bp…way high, put me on Lisinopril, figure that my high BP was making me dizzy. (No insurance now so all out of pocket…found a PC doc that takes monthly payments, so at least I have some care). This feeling of im balance lasts all year. Worse walking Into stores, halls at work…sometimes bad ping pong feeling in my brain when I talk to someone. Bloods, balance specialist, allergy meds….no results. Went thru a real rough patch on personal stuff starting in June..got fairly depressed. Balance issues remain…not really dizzy, not really light head…just way out of whack in my head..gait was never really affected, but felt like my brain was swimming in my skull with head movement and walking….have little mini vertigo effects now and then but never right. Doc suggest another MRI…comes back clean. Suggest that I may be depressed, maybe try an antidepressant. Got a head cold that severely congested me and the feeling was almost nil during that time…Odd. Anytime I had a few drinks..got worse. If I was drunk..the feeling would be much less…very odd.(not a real drinker…just trying to remember odd things with my balance issue) Ias off work from mid December til midnight Jan. Around late December…the feeling began to get less and less. Mind you, sitting at home in my total comfort zone most days…no work ..no stress..no homework (yeah, I'm also a student…again). Still felt fairly "blue". Started on welbutrin mid Jan….I'm really not a fan of the idea of antidepressants, but F**k it. Also because I read it helps with smoking cessation and I'm a dirty, filthy smoker (half pack a day). So ..now I'm back in classes, back to work, feeling good…well, feeling balanced and no sign of swimming brain. Well, a week and a half ago, I felt like my left ear was full and felt a bit off. So, I did the epely maneuver out of fear of bppv and having a vertigo attack(cause that s**t is no joke and scares me to death). No luck and I go right back to that feeling. Head feels out of balance constantly. Not dizzy, though with some extreme head movement, I get hit with an intense dizziness that goes away really quick but out of battery remains. So, I'm back to square one and I start a new job in about two weeks. Very worried of having an attack and losing a new job cause I'm calling in sick on the first day. I've read some mold things on here, some things about zinc and other supplements.. cbt therapy, which my doc is suggesting next…I'm just looking for more suggestions on what it could be or if the zinc and supplements worked and how long before results? Or perhaps I'm on the wrong forum? Living with this for a year now, with a previous case 5 yrs ago and no real answers is truly starting to effect the way I think about life and how to cope. So far I have been able to maintain work(but we'll see with the new job) but it has certainly affected my social life and the way I interact with people. I had that brief moment of clarity and it went away pretty quickly. Any response or suggestions would be greatly appreciated.

Liked by lioness

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@the138 Wonder if something is in the air I have the dizziness and almost feel a couple of times my balance is of .Ear Dr sent me for test a2hr testing still waiting for results Another lady here has the same thing I was talking to a neighbor and she has same problem. Your case is allot more then mine but just waiting for appt I've noticed the balance is getting worse and I felt pressure in my head like it wasn't connected to me strange feeling .Hope you find out the cause soon .Let me know how your doing

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@lioness

@the138 Wonder if something is in the air I have the dizziness and almost feel a couple of times my balance is of .Ear Dr sent me for test a2hr testing still waiting for results Another lady here has the same thing I was talking to a neighbor and she has same problem. Your case is allot more then mine but just waiting for appt I've noticed the balance is getting worse and I felt pressure in my head like it wasn't connected to me strange feeling .Hope you find out the cause soon .Let me know how your doing

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2 hour testing? What does that do and who does that? Did you have a vestibular issue that start yours off?

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@the138 It all started with nevk soreness for a couple of weeks then the dizziness when I laid down ,when getting up I sat on bed before it went away but got up and weaved all over the place then my head felt like a balloon and headaches I also for years have had tinnitus ringing in the ears so ear Dr sent me for testingn2hr test waiting for results the other lady told me today her Dr is sending her for balance check

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@lioness

@the138 It all started with nevk soreness for a couple of weeks then the dizziness when I laid down ,when getting up I sat on bed before it went away but got up and weaved all over the place then my head felt like a balloon and headaches I also for years have had tinnitus ringing in the ears so ear Dr sent me for testingn2hr test waiting for results the other lady told me today her Dr is sending her for balance check

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Tinnitus may be the key in your case. Doesn't sound like our issues are that close. I did not have ringing, no neck issues, and mine isn't affected by laying down and getting up. It comes only with head movement and stress, beyond the hardcore vertigo episodes that would last over a week. Hopefully the tests will show you something. Let us know when you get results. Good luck.

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@Gavin

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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Hey Gavin, I was wondering if you are still free and clear and if you could read my case to see if you recognize any similarities. I was adopted and have absolutely no genetic history so your case intrigued me and my symptoms. Thanks.

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@the138

Tinnitus may be the key in your case. Doesn't sound like our issues are that close. I did not have ringing, no neck issues, and mine isn't affected by laying down and getting up. It comes only with head movement and stress, beyond the hardcore vertigo episodes that would last over a week. Hopefully the tests will show you something. Let us know when you get results. Good luck.

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@the138 O.k. this was just what's happening to me I hope you find out what is causing yours I'm in PT for my back and was telling her about balance problems so she is starting me on balance training I,ll let you know after 14 the

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Hi all, I'm 31 and my dizziness started a year and a half ago when I had an episode/panic attack regarding going back to work and a breakup. My anxiety/panic was through the roof where I couldn't go out in public and my dizziness was at a 10 to where I couldn't drive. My mom drove me to my psychiatrist and he put me on Xanax and it instantly took away my dizziness (I also was on Seroquel/Latuda during this time). Fast forward to a year and a half, we have tried tapering off of the Xanax, with the dizziness symptoms going away for a short period of time, but they are back. Because the Xanax took the dizziness away, we are linking it to stress/anxiety. I have recently moved from Latuda to Prestiq, hoping the Latuda had something to do with it because that drug seemed to also make me panicky. However, the Xanax isn't working as well with the Prestiq and the dizziness is now not going away. I'm also super foggy brained. I'm a teacher and I can't think straight, I can barely work, I can't workout, I'm miserable. Has anyone had luck with CBT? Any advice on where to turn to next? My psychiatrist doesn't seem to have the answer but CBT, and I just don't know what to do, I feel like I'm about to lose everything I've worked for. Trying to stay hopeful and positive.

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Cognitive Behavioral Therapy may be of some benefit. Problem is finding the right psychologist/provider who knows how to do it properly. I did not have any luck with it. I was just paying someone to talk to. Should have saved my money and just talked with my dogs or cats or chickens for that matter.

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