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.

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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@purvissp

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

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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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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

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@albatross

Of the anxiety medication, which one and the dosage are you taking. Just wonder if I should inquire about a longer lasting one instead of the alprazolam ?

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My MD prescribed 1mg twice a day of Diazepam. These types of drugs help with vestibular suppression. Not much in side effects, but I have noticed some benefit.

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Do you walk with a cane or walker because of the dizziness?

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Cane

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@doc3rob

My MD prescribed 1mg twice a day of Diazepam. These types of drugs help with vestibular suppression. Not much in side effects, but I have noticed some benefit.

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@doc3rob In the last several months I have been dizzy and balance has been bad I had a2hr ear testing the other day did you go through this? Dr did a vestibular and risk thresh test it was called and some other things I do walk with a walker . Just wondering if you had test?

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I have single sided deafness to my left ear. I have a bone anchored hearing aid. I underwent a Videonystagmography (VNG) to assess inner ear vestibular function. I was diagnosed with Central Vertigo and Chronic Subjective Dizziness/Persistent Postural-Perceptual Dizziness. So far, I have failed physical therapy – vestibular rehab. Already on SSRI – depression meds and now low dose Diazepam (known vestibular suppressant). Minimal improvement. I fall about 2-3 times/wk due to vertigo and then disequilibrium afterwards. I am dizzy 24/7. No driving, no work and looking into disability.

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@doc3rob

I have single sided deafness to my left ear. I have a bone anchored hearing aid. I underwent a Videonystagmography (VNG) to assess inner ear vestibular function. I was diagnosed with Central Vertigo and Chronic Subjective Dizziness/Persistent Postural-Perceptual Dizziness. So far, I have failed physical therapy – vestibular rehab. Already on SSRI – depression meds and now low dose Diazepam (known vestibular suppressant). Minimal improvement. I fall about 2-3 times/wk due to vertigo and then disequilibrium afterwards. I am dizzy 24/7. No driving, no work and looking into disability.

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@doc3rob I'm so sorry you are having this. I don't know my results yet but don't have the dizziness 24/7 just at night when I lay my head down on my pillow then sitting up have to wait till it subsides but balance of haven't fallen yet but almost . A friend has same problem but she has fallen and was in E.R. 3 times I'm trying to get her to get ENT to evaluate her . Hope you get you disability Thanks for info.

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Would recommend Neurology, not ENT first. If you have a local Neurotology MD do that first instead.

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@doc3rob

Would recommend Neurology, not ENT first. If you have a local Neurotology MD do that first instead.

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@doc3rob Thanks for info she does have neuropathy so is seeing one .I will suggest that to her

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@doc3rob

I walk with a walker because at times I get so unstable.

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@doc3rob

I have single sided deafness to my left ear. I have a bone anchored hearing aid. I underwent a Videonystagmography (VNG) to assess inner ear vestibular function. I was diagnosed with Central Vertigo and Chronic Subjective Dizziness/Persistent Postural-Perceptual Dizziness. So far, I have failed physical therapy – vestibular rehab. Already on SSRI – depression meds and now low dose Diazepam (known vestibular suppressant). Minimal improvement. I fall about 2-3 times/wk due to vertigo and then disequilibrium afterwards. I am dizzy 24/7. No driving, no work and looking into disability.

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I have been trying to get on social security disability as well. I haven’t been able to work since July 11 of 2018.

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