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johnl1

Chronic subjective dizziness

Posted by @johnl1 in Eye, Ear, Nose & Throat, Mar 17, 2013

February 2013. After years of experiencing unexplained "dizziness," my words, I just received the diagnosis of CSD. It became intolerable this last fall, I was unable to function. Everyone around me was so pleased to have a label for it, I was hoping for more, like relief. At this site I have seen reference to Xanax and klonopin, but not Sertraline. I'm planning on trying Sertraline, I'm surprised there is no mention of it here.

I figured I had Meniers desease, they say no, because it's not episodic; it's constant. And they claim ear damage can't explain my symptoms. Yet I have been told by friends that they know of others, who probably have ear damage (from running chainsaws for years) complain of constant dizziness. Guess I still wonder about that.

breath air, eat food,
J

claudia11

Posted by @claudia11, Mar 18, 2013

I have had constant dizziness for 2 years. Have been to over ten doctors in Chicago.
For over one year I had no diagnosis. Then I was told that I might have cervical vertigo. Then it was vestibular nerve disoder and now it is possible nerve compression.
I have osteoarthritis and have had 3 abnormal ABRs. My MRI is fine and is all tje blood work. Am trying high dose cortisone for 10 days. Have also been told to try effexor or lexapro, One of my docotrs suggested gabapentin. Have not taken any of those.
Have been to physical therapy for four months and tried several vestibular nerve therapy. So far nothing has worked.
I would also like to know if anyone has had success with klonopin or sertraline.

Thank you and good luck

lyonsden10

Posted by @lyonsden10, Mar 23, 2013

I have been disabled by chronic dizziness since 2010. For me, I am convinced that Klonopin was part of the problem that fried my nervous system and started this nightmare. Check out the book Benzo-Wise: A Recovery Companion by V Baylissa Frederick. I only took .25, but it was nightmare getting off of it. I would never use it again. There are great support groups about the dangers of benzos. I, too, have seen so many types of doctors. The label of CSD seems like an easy out to blame anxiety for what is a complex physical issue.

johnl1

Posted by @johnl1, May 29, 2013

Trying Zoloft. Just now getting to 100mg. Really nothing yet to share. My plan is to stick with Sertraline for 30 days, then I'll share again.

irishlace38

Posted by @irishlace38, May 3, 2015

Chronic dizziness is a terrible & sometimes disabling way to live. Have enduring this for 7 mos. some days are better than others. I have a arthritic neck & wonder if that could be a cause. Doc doesn't think so. To have mri & cat scan wed & not looking forward to it - will need to medicate. I hope I get through it.!!

johnl1

Posted by @johnl1, May 19, 2015

Yes, it is terrible. So is Meniere's. Acceptance, was and still is a
struggle for me. But it is the one thing that allows me to move on. It is
beyond doctors to alleviate all suffering, and our thinking otherwise is
unproductive. It is just a part of life. It is difficult to start, but a
gratitude list helps. I'm grateful for my kids, grand kids, lichen that
grows on rocks, moss. My wife. And really many other things; it was not
always like this.

We all have to look for and use what works for us as individuals. This is
our purpose in life, at least a part of it.

Hoping you prosper,
J

irishlace38

Posted by @irishlace38, May 20, 2015

Hello John,

Thank you for the response to my posts. My MRI that I had last week to check the arteries in my brain & neck came back okay. And while that is a good thing, I am still walking around with my "space" head & walking a little off kilter sometime.

I have not reached the point of acceptance. I would like a reason or a dx telling me what is causing this & why. Once in a while I will get a day that allows me to almost feel "normal". I miss my life & feel bad for my husband.

I am glad for you that you have come to accept your issues. Thanks again.

Marie

johnl1

Posted by @johnl1, May 21, 2015

Hi,
I should probably add; my acceptance is not total, and it took time.
Started my journey in the 80's. Went to an ER in 2008 and was referred to a
neurologist then ENT, cardiologist too. A couple of years ago it started
interfering with work. It's been progressive. Just had another MRI, it came
back OK, I was disappointed. Besides CSD there is Meniere's and a skull
malformation having an affect on the brain stem. And our cerrabellum also
plays a role with balance. Maybe in time, they'll nail this thing down.
Keep on, keeping on.

irishlace38

Posted by @irishlace38, May 22, 2015

Thank you so much for your input. It is a struggle for you too. My neck is so arthritic with 3 bulging disc that I find it hard to believe that it is not the culprit. But the experts says not.

I will keep pursuing & trying to go with the flow. Good luck to you.

johnl1

Posted by @johnl1, Mar 31, 2013

I will be speaking to a doctor soon about Sertraline (April 5, 2013); I will share results ASAP. I was offered a trial of Xanax, I decided not to try it, I want a long term solution, this is a long term problem; I am leaning toward Zoloft, mentioned in some online info by a Dr. Staab. I cannot argue against anxiety playing a role, that being the case, I consider an anxiety Rx to be worthy of a try.
Best regards

trishanna

Posted by @trishanna, 4 days ago

@colleenyoung do you have anyone currently discussing Meniere's disease and tinnitus? Mine has flared after a forty year absence and I'm also dealing with tinnitus. Just wonder if anything is new with either one.

suzanne321

Posted by @suzanne321, 2 days ago

I have both regular (high-pitched) tinnitus and pulsatile tinnitus. I feel and hear my heartbeat much of the time, but it's louder when I wake up, after meals, and whenever I exercise or move around a lot. I can feel the throbbing, sometimes in my head, sometimes in my chest or the back of my neck. I have had a treadmill test, an MRI of my head with MRa dye) around my ears, and carotid artery doppler ultrasound. All were okay. But although I have a hard time with MRIs, I wish doctors would also do an MRI/MRA of my upper neck, which has never been checked. My worry is something like an aneurysm, although it may not be anything like that. I just wish , that since pulsatile tinnitus is usually a vascular problem, They'd also check my upper neck at the base of my skull. They don't feel it's necessary. Does anyone here have anything like this? I'm not worried about the ringing tinnitus, but the heart-pounding kind every day is a little scary, even though I've had it for 6 years and nothing bad has happened. Your thoughs or comments?

trishanna

Posted by @trishanna, 2 days ago

Wish I could offer some advice, but pulsatile tinnitus - at least based on my research - is a special catagory of tinnitus that's beyond me. I have my own thoughts on tinnitus in general, and I will make one suggestion: have you seen an allergist especially relative to oats, wheat or corn allergies, and are you on a reduced sodium diet? Hope you find relief soon.

suzanne321

Posted by @suzanne321, 2 days ago

The high pitched ringing started after a serious virus that attacked my nervous system and inner ears. I also experienced some hearing loss. I haven't been able to pinpoint any certain foods that make the ringing worse. I'm not on a reduced sodium diet, because my blood pressure is usually rather low. I've habituated to the ringing and often am not aware of it at all, The pulsatile type, though is a tougher thing to live with. It's bad enough to have heart palps each day, but having to hear the beats like a drumming in my head....that is difficult.

trishanna

Posted by @trishanna, 1 day ago

I do apologise for not making my remarks clearer. With regard to my allergy question, I don't think you would have an awareness of a possible allergy, since it affects the inner ear. In other words, the allergy would cause your symptoms, but only over a period of time. And my other comment, too, about sodium was meant to suggest a low-sodium diet might help ease your symptoms.

suzanne321

Posted by @suzanne321, 1 day ago

I understand, and I appreciate your comments. My dad used to pass out because of low blood pressure (and I sometimes feel lightheaded when my blood pressure drops some, so I've been told to get enough sodium daily. I try not to use more more than enough, but I'm not supposed to cut it way back either. 🙂

As for the oats, wheat and corn, that's something to consider. Thanks.

suzanne321 likes this
colleenyoung

Posted by @colleenyoung, 4 days ago

Hi @trishanna,
I'm tagging @johnl1 who wrote a while back about Meniere's disease. I hope he'll rejoin the conversation.
Trish, how frustrating it must be to deal with Meniere's after a 40 year absence. Do you know what caused this episode? How are you managing it?

Several members have written about dealing with tinnitus. Here are a few discussions you may wish to check out:

- Hearing repeated sounds and echo in my ear http://mayocl.in/2loSK10
- Pulsatile Tinnitus and Carotid Fibromuscular Dysplasia (FMD) http://mayocl.in/2lAEeW9
- Live Q&A: Hearing Wellness: Signs, Symptoms, and Treatment http://mayocl.in/2lACpbN

I encourage you to continue the discussion here or perhaps start a new discussion dedicated to Meniere's and tinnitus.

trishanna

Posted by @trishanna, 3 days ago

Thanks for responding.  It appears that some of the linked sites are down for whatever reason, but I'll check back.  Hope someone responds because it seems that Meniere's affects a relatively small number of people.  It's recommended that one join a support group - not easy to do.  My original diagnosis was that an allergy to oats, corn or wheat was causing my symptoms, and yet I can find almost nothing on the subject.  Just wondered if any progress has been made other than controlling symptoms.  While recovering from an illness, I leaned heavily on prepared foods which are extremely high in sodium content, thus causing this flair up, so I've tightened up on salt intake and am doing better.  I also believe there is linkage between Meniere's and tinnitus, but can find nothing on that, either. 

colleenyoung

Posted by @colleenyoung, 2 days ago

@trishanna, the links are working for me. Can you please try again?
I will search for others talking about Meniere's. No promises, but I do what we can. 🙂

In the meantime, I hope you have seen @suzanne321's message above. She just joined the community and would like to about tinnitus with you.

trishanna

Posted by @trishanna, 2 days ago

Thanks, Colleen, I'll try links again.

jamienolson

Posted by @jamienolson, 2 days ago

Hello @trishanna and @suzanne321, Thank you for posting to our Mayo Clinic Connect community site! I'm sorry to hear both of you are troubled by such symptoms. That must be tough to deal with on a daily basis.

@trishanna, Thank you for your patience while we were doing some searching. Have you looked into VEDA (Vestibular Disorders Association) https://vestibular.ong/#? They are a major support group run by a nurse practitioner that you may be interested in. They have a significant amount of literature, most of which has been vetted through a scientific advisory committee. You could check to see if they have information on Chronic subjective dizziness (now called Persistent Postural-Perceptual Dizziness).

@suzanne321, Welcome to our community! Suzanne,you said that you have been living with this for 6 years. Are there days or weeks that seem to be better than others? Does the time of year affect your tinnitus?

I would like to introduce you both to @kariulrich, one of our Mentors on Connect, who has recently discussed the topic tinnitus. We will be sure to continue to connect all of you with other members who come here to discuss tinnitus, dizziness and or Menieres.

If you are interested in more information or obtaining an appointment at Mayo Clinic, please click here- http://mayocl.in/1mtmR63. I do know that Mayo Clinic ENT also has literature on Persistent Postural Perceptual Dizziness. You would be able to request that information through the appointment line.

trishanna

Posted by @trishanna, 1 day ago

Thanks for the new link - it's very interesting.

gjs411

Posted by @gjs411, 7 hours ago

It took me years to figure out that i have an EMF sensitivity. I wonder if any of you have a sensitivity to wireless as well? I thought I was alone but it turns out, it is a worldwide problem. http://www.bioinitiative.org/ here is some science behind it (lots of scientific studies under Reported Biological Effects)
I wish I was able to type more now but the "treatment" for EMF sensitivity is to get rid of the wireless - use wired instead or stay away from it. I learned a lot from this guy too http://www.electricsense.com/category/electrical-sensitivity/are-you-es/

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