Real talk: How Mal De Debarquement Syndrome has affected my life
ฝัง
- เผยแพร่เมื่อ 21 ต.ค. 2024
- This is real talk y'all. This syndrome stole so much from me, almost stole my sanity ; but, has also given me such deep perspective of what really matters in life. Thank you for watching. Please subscribe to my channel to follow my journey back to land and health. I can do ALL thing through Christ who gives me strength. Sorry again about the annoying dog, I'm pretty sure my neighbors do this on purpose when I'm making my videos 😂
Thank you for sharing your story. I sincerely hope that you have found relief and healing since you posted this video.
I have been suffering with this syndrome for over 35.years...it all started when I was 23 and began after painful emotional issues and vertigo episodes that left me terrified.
Nobody understood this condition at the time.. I was eventually treated with Xanax and antidepressants but recently had symptoms worsen again and my med's are no longer working. I'm now 55 and the condition has worsened.. only further compounded by Parkinson's symptoms which are likely due to misdiagnosis and years of psych medications.
Nobody really knows if I will recover.. and knowledge and treatment of both conditions are not readily or cheaply available here in Australia.
Like you..I was social, active,
empathic, caring and had a great memory. I'm struggling with being single now as my anxiety and depression affected my relationship with my ex fiance and no body understands what we are experiencing or the terror of losing yourself. I feel like I am dying, going crazy and the fight to find inner peace, love and kindness for myself is an ongoing journey.
But you are right.. it does teach us about how strong we really are!
Please know you're not alone in this struggle. It may be a rare condition but we are united in the fight to be better, more caring, loving and compassionate people.
This is just a part of the journey that the Universe set us on...acceptance is so hard but ultimately the only way through.
Much love to you. 🙏
Thank you for sharing your story so honestly and openly. My heart goes out to you! I've lived with MdDS for 5 yrs now and I've felt and experienced everything you described. First I'll say, it's become much easier to cope with over these years. The first several months were terrifying. My son was 11 y/o at the onset of my MdDS and the guilt I felt for not being able to be the active mom I had always been in his life was heartbreaking. Like you, I was very physically and mentally active. To have all of the that come to a halt was a major loss. Actually, everything about my life changed with just a simple episode of vertigo (BPPV). That's what triggered my MdDS. I went through the panic attacks, I sought counseling, I began regular meditation, and joined an online support group for women with chronic illness. I saw every kind of doctor, had every kind of test, and studied neuro-plasticity for months. I started using a walking stick for "grounding" and "vertical reference". It helped. I started getting a professional neural-cranial massage weekly. One baby step in front of the next I've been able to work my way back to many, many things I was afraid I would never be able to do again. Like you, I've discovered a strength inside of me that I couldn't have imagined, but I've also learned to ask for help. Most of my family and friends have come to understand and accept my limitations, and they often see my as brave. I have adjusted to so much to all of the crazy sensations, learned tricks to finding comfortable positions, etc, etc. It's all a learning process, but I believe it can and will happen for you, too. It's a daily maintenance practice. I now know when I need to rest and when I can push myself a bit. One thing I have found to be true is that fear, especially in the beginning, was my true limitation. Now, as much as I can, I try to LEAN IN rather than resist the sensations. One moment at a time. Joy is there for us. Healing blessings to you.
Blue Citrine, this has to be some of the best advice I've been given, thank you so much. 💜 God bless you on your journey.
I want to say thank you for doing this video. I am newly diagnosed with this and also Lyme disease and needed to see that I am not alone in this. I was a nursing student and can not finish school in this condition. As a mother and wife, you feel inadequate. Thank you for helping others in this. God bless you and all of us suffering with this awful disease
Paige Romero I’m so sorry you have to go through this. Keep pressing on, it gets better❤️
Beautifully Broken thank you! I hope you are doing better
Paige Romero I am doing better than I was. I went to NY and did a treatment at Mt. Sinai. Still not better enough to work yet. I made a couple videos since this one. I’ll be doing a new one very soon❤️ today is my one year mark.
Love your honesty and positivety in your video.
I also have MdDS nearly 9 years now.
My life has changed dramatically but like you I try to remain positive.
Some days I cry for my old life.. A cry every so often is good for you!
I hope you are coping 💜
Maureen Jarrott a good cry occasionally is necessary. I’m coping much better than I was when I made this video. I’m almost 2 years in now and I’ve learned to co-exist with it for the most part. My life is so different now but I’m learning to find balance, remain hopeful and thank God for the good days❤️
God bless you. Wish I could give you a big hug.. I am with you down to the cruise I took in January. There is something in knowing you are not totally alone and that someone else is going through the same thing....
Absolutely! It's nice to know we're not alone, even though it makes me sad others have to go through this too.
This video has been such an encouragement to me! Thankyou for sharing your story, so others dont feel so alone. I finally found a vestibular therapist and audiologist who treat mdds in my city, hoping they can figure out if what im dealing with is mdds or something similar as I still have not been diagnosed yet.
Hi Amanda, I’m so glad this video has encouraged you. I wish you the best of luck on your vestibular journey. And I pray you get a diagnosis and treatment plan quickly ♥️
@@beautifullybroken9373 Thankyou so much! You mentioned in one of your videos that you experience ear fullness or pressure. Do you think that is more due to vestibular migrane or mdds? Or both? I'm experiencing that as well. It seems like alot of women who have mdds also have VM. Have you found that to be true?
@@amandar614 yes. When I went to NYC the researcher treating me mentioned that many times VM and MdDS are co-morbidities together. I think the ear pain and fullness is VM manifesting more so than MdDS.
@@beautifullybroken9373 okay that is good to know. I feel like I only experience the ear fullness here and there or during pms but it is not consistent, like the swaying and rocking is.
@@amandar614 same here
I was just diagnosed with this. That's bologne about not getting better. Don't listen to that. Think outside the box. Doctors will throw drugs at you all day long. Have you done VRT? How about functional neurology? Meditation. CBD oil. I'm so sorry you're going through this. I know exactly what you're going through. It can be hell. Don't stop doing what you love. Don't allow this shit to take you over. You're stronger than this.
Megan Henry hey thank you❤️ I’ve come a very long way since this video. Still have MdDS and vestibular migraines but I’m about 50% better! I went to NY and did an investigational treatment for MdDS. I got much better after a week of treatment in NY. I found a great neuro otologist who has me on Nortryptiline, which has made a huge difference. I did 6 months of VRY and have been doing my own continuation of therapy using dance. I just launched my own website www.ashesintoartistry.com selling my artwork. I took up painting to distract my brain from the sensations and turns out I’m pretty good, lol. I was approved for disability and learning to exist in this new normal. I’m still a home body because I’m sensitive to a lot of environmental stimuli still, but I’m in a place of thriving. I started a support group on Facebook called MdDS, vestibular migraine, PPPD support. I’m also participating in a film documentary called Unfixed( go find them on TH-cam) representing vestibular disorders💔
I’ve had what doctors think is mdds my whole life.. I’m 21.. I’ve never been able to do most what other can do, and it’s the worst it’s even been since April this year. I plan to film my own video talking about it within the next couple weeks. I hope you’d watch it.
Renee Murray I’d love to. I’m sorry you’ve had this so long and so young.
Thank you for sharing. This is new to me still and it is hard to ask for help when independence has been a strength. I’m trying to stay grounded and not panic. Good days and bad. Time with family is truly something special. I’m trying to cope at work and am terrified some days at my lack of cognition. Bless you.
Let's connect!! Find me on FB: Rachelle Alford
Beautifully Broken somehow I missed this post until now! 🤦♀️ will find you on FB!