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I have Major Depression, Panic and Anxiety Disorder, Hyperacusis, and Chronic Subjective Dizziness (CSD)
Hello,
My name is not important but my struggle is real. I've been to Mayo in Rochester, Minnesota where I had my diagnosis' from back home confirmed.
I have Major Depression, Panic and Anxiety Disorder, Hyperacusis, and Chronic Subjective Dizziness(CSD).
Most people with my diagnosis struggle and fight with the fact that it really may be in our brains. They insist that it's "medical" and not "psychological". They seem to forget that their BRAIN is an AMAZING COMPLEX ORGAN and that it's still medical if your brain is causing symptoms that can be proven on a test to exist.
Well, I may be stuck like this for the rest of my life but I am not going to just crawl into a corner and die! If my brain is creating these problems then it can rewrite the program!
You see, NO one who discusses CSD as an ENT disease accepts the brain as an organ. They aren't fighting. They rely on drugs that won't cure you and no one ever states they will. The meds only make it easier to "rewrite" what the brain has created. I'm not saying it's easy, it's far from easy, but you have to want it!
My depression is my biggest hurdle. It's been there my whole life. I've been living in a survival mode since I was tiny! But I was good at it, too good at it. I didn't even know that what I did wasn't normal. It wasn't until my parents divorced when I was 25 and I had to keep my tattered family strung together that my survival mode imploded! I am now 29 and my whole life seemed to be on hold for a lifetime.I wasn't diagnosed correctly until I was 28.
I used to say that my brain stole my life from me. I had all these hopes and dreams, but I was wrong. My passions help me hold on and fight for every inch of ground I gain. I am married and it has been very very trying, but my husband's love and compassion for me is bigger than the bad days and the doctors and drugs and therapies....
CSD is a BRAIN disorder whether a trauma caused your brain to create it or it was already operating on a not so full tank. You can't ignore your brain, it will literally make you fall flat on your face if you're not careful!
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Hi, Ovecomer. My pseudonym is Roman. I've read your posts on the CSD group and am very impressed with and grateful for your positive attitude and gifts of expression. I was diagnosed with CSD in Dec '14 after experiencing worsening symptoms since April '14. I head a mental illness ministry, so the complexities of mind, body and soul are familiar territory.
I would love to connect by email. We have a ministry email address that you could use to protect your identity and mine. I will tell you how to get to it if you're interested.
Gratefully, Roman
Dear Roman,<br />
<br />
I had almost given up hope that anyone else with CSD (on these boards) had God as their light in the dark. <br />
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I keep telling myself God wouldn't let me walk through this so alone and so surrounded for no reason. There had to be a reason for it all!<br />
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It's been a long time since my eyes filled with tears of joy and not torment and sorrow. <br />
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Tell me what to do! I was created to help serve others. If my life helps me do that then tell me how.<br />
<br />
Overcomer<br />
(My Big Sister Gave Me This Nickname )<br />
<br />
Sent on a Sprint Samsung Galaxy S® III
So good to hear from you directly, Overcomer. I feel sure we aren't the only followers of Jesus on these boards. I've been involved in mental illness ministry long enough though that I understand that many people -- Jesus-followers or not -- don't feel free to discuss their brain-related disorders, even under the anonymity of pseudonyms.
Without going into a lengthy testimony, became a believer while experiencing a depression in 1992. In 1997, and at the ripe age of 48, I experienced a single episode of hypomania and was correctly diagnosed with bipolar disorder. I was treated quickly, but slipped into a persistent, low level depression for a year until the 3rd antidepressant brought me out. The sense that God wanted something to come of this persisted, and in 2001 we began a bipolar support group ministry at my church. All are welcome, regardless of their faith, and later this year we'll experience 15 years and over 2000 attendees. I retired 18 months ago to work with a group in starting a web-based national mental health ministry that will work though about 12,000 local volunteers to help people get the hope, quality information, and contacts they need.
I say all this to encourage you and anyone else that's reading these posts that there is purpose in our pain, regardless of the source of it. When we experience something difficult (and all of us will sometimes, and some will many times), we have a choice. You've made the right choice, Overcomer, and all who have ears will hear it in your words.
Roman
PS I tried to include the email address of our national ministry, but the discussion board administrator did not allow that because I signed up for this so recently. Hopefully after several days it will allow me to include it. In the meanwhile, we can communicate through this discussion board, and perhaps others will be helped as well.
Dear Roman,<br />
<br />
I seem to have a story that just keeps getting more mountains and valleys the longer I am around. My entire life seems to be me all alone while I am completely surrounded. After 29 years I am beginning to come to terms with the fact God needs me to focus and I do it best this way. <br />
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I've got people who love me, a couple people who might understand me, and a small group of people that support me, but at the end of the day and in the quiet hours alone at home it's just me inside my head and God knows there is a war in there I face on my own. <br />
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God has given me everything I need to conquer this particular mountain and he's my biggest supporter, yet even for someone raised from first breath to trust in God, I can't quite feel his presence on the battle field. I have to have faith that he is present even in the numbness of my depression, the fear of my anxiety, the anger, the self hate, the frustration, and all the pain.<br />
<br />
Then I take a nap and work on my CSD coping skills and day to day therapy! Woo! Ya know my Grandfather told me I could do anything I put my mind to and he told me to save the world one dog at a time... I wonder if he would still see that I am doing things, just a bit differently than I thought? <br />
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Oh, if you don't have a pet of some sort....even if you are retired....I highly recommend one! Science hasn't caught up to explain it, but God didn't create them critters for nothing! Personally my pets are part of my therapy for my conditions on all levels and maybe, one day, I can share what they have done for me with others.<br />
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I should sleep now. <br />
<br />
Sincerely,<br />
Overcomer<br />
<br />
<br />
<br />
<br />
Sent on a Sprint Samsung Galaxy S® III<br />
<br />
<div>-------- Original message --------</div><div>From: Mayo Clinic Connect </div><div>Date:02/20/2015 2:59 PM (GMT-06:00) </div><div>To: mrperry51311@gmail.com </div><div>Subject: Roman replied to discussion "Hello, My name is not important but my [...]" [Mayo Clinic Connect] </div><div><br />
</div>
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1 ReactionHad undiagnosed CSD for a decade, (gave me spinal taps, this was way before CAT scans and MRI scans) finally was put on xanax, which worked at different doses over the past 25 years. CSD is a real life killer, my prime good years all gone. Now my current MD wants me off of xanax. I don't think she ever heard of CSD. Halcion oddly enough gave almost immediate relief, but my DR's wouldn't prescribe it as it was only for "sleep". I plan on getting a different Dr. Peace be with you..........Stay the course.....This affliction led me to Jesus, however.
Good to hear from you, Levade. It's nice to know there are still some folks out there who are experiencing what a doc has diagnosed as CSD. When I posted in 2015, I had only started having symptoms 9 months before. Over the past nearly 3 years my chronic dizziness has worsened, but not to the point that it's disabling. I also experience what a neck vertebrae and nerve difficulty that keeps my shoulder and upper arm muscles on the left side in a near continual spasm. My chronic subjective dizziness is focused on the left side as well. It causes me to feel like my left side -- neck/shoulder to foot -- is much heavier than my right side. Thus when I walk I have to be careful where my left leg and foot are going. Really strange and slowing, especially for a 68 year old.
But GOD is GOOD! The national mental health ministry we founded is gain traction. You can check out our website at mindsrenewed.org.
Blessings to all,
Roman
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1 ReactionHi Roman, my sympathy to you. Chronic dizziness is a misery that allows one to work, play etc. while wishing one could crawl into a hole and hide. After 15 years of being undiagnosed "they" finally got me on xanax which set me free. Since there MAY be a connection to dementia the V.A. is phasing out xanax which means I will have to go to another psychiatrist. I've been off of xanax for almost one month with the CSD now recurring. You sound like you are functioning but with misery as a close companion. May God protect you and finally heal you!!!! Peace, levade.....(a pseud.). my CSD is confined to the back of my head, right side, by the way.
@levade - I'm not familiar with CSD. It's hard to understand why doctors would stop prescribing the medication that's been working for 25 years. Amazing! My doctor would like me to get off morphine sulfate contin, but when I tried going without it, I found fairly quickly that it was the one thing that touched my pain. Maybe the day will come when I won't need it.
Have you ever researched a substitute for Xanax? I hope your doctors find the right treatment soon. I know it can be frustrating and challenging.
Jim
Hello @overcomer11
Thank you for sharing with us your journey with depression, anxiety and CSD.
I like what you said about pets, at Mayo Connect we have a discussion the benefits of pets, perhaps you have seen it already. It's called, What Pets Can Do, Health and Healing. Here is the link, https://connect.mayoclinic.org/discussion/what-pets-can-do-health-and-healing/
I think you will enjoy the stories (and pictures) of people's pets.
One of my favorites is a Youtube video from a cancer specialist at Mayo Clinic. Here is the link to his video about the value of pets in healing, The Health Benefits of Pets https://www.youtube.com/watch?v=GKMpUyddFyo.
By the way, you mentioned working on your "CDS coping skills." Is that some specific exercise or are you just speaking generally about coping?
Teresa
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