Kristin's Success Story: recovery from PPPD, 24/7 rocking & more despite Meniere's diagnosis
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- Опубліковано 28 чер 2024
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Part 2: • Somatic work, mindfuln...
This is PART 1 of an interview with Kristin Townsend, LMFT, who is a holistic, somatic therapist and who has her own story of recovery from PPPD despite a Meniere's diagnosis. Kristin suffered from constant symptoms like dizziness, tinnitus, visual symptoms and derealization, and then she also dealt with tinnitus and lost her hearing, resulting in receiving the Meniere's label. She brings so much wisdom to her account of her experience and I know you'll learn a lot from her. Stay tuned for Part 2, in which we will take a deeper dive into somatic therapy and yin yoga for neural circuit dizziness.
More about my take on Meniere's Disease: • Ask Dr. Yo: is Meniere...
Part 2 of this interview: • Somatic work, mindfuln...
Learn more about Kristin and her services at www.krisltownsend.com/
Learn more about me and my services at community.thesteadycoach.com/
The Neurology, Psychiatry and Balance Therapy Center www.npbtc.com/
00:00 Intro & about Kristin
04:19 What was going on in her life when symptoms started 2.5 years ago
07:30 How the symptoms started and how she went down the medical pathway
12:40 Took 5 months to get to a vestibular specialist, who diagnosed her with PPPD
17:00 PPPD symptoms started a year before hearing symptoms - ear ringing, ear pressure, motion-provoked dizziness, visual symptoms, derealization
21:08 PPPD was resolving when hearing symptoms started, Meniere's diagnosis
27:15 Once she started thinking about this is a neural circuit issue, things got better
28:44 Stopping desperately seeking answers & trusting her body to heal
31:04 Yin yoga and why that was helpful in working to heal relationship with body
39:17 Changing the mindset that you need to be fixed
44:43 These are skills that take time to develop
47:43 She feels 90% recovered and is getting better every day
DISCLAIMER: Please note that Yonit Arthur, The Steady Coach and any of our guests are not acting as an audiologist nor offering audiology or medical services or advice on any public videos or on any other content. This channel provides wellness education and personal opinion only, and are not meant to be a substitute for medical or mental health instruction or intervention. Use any tools discussed at your own risk. - Розваги
It all seems to come down to finding safety in the body. When we are constantly looking for ways to fix ourselves, for good reasons, we are constantly telling our brain that we are broken. This drives the fear up which exasperates the symptoms. Vicious loop.
It’s hard, but staying calm and letting the body go through the motions without the fear, and calmly breathing will show the brain that you feel safe and eventually it will turn down the symptoms. Loved this story!
Yes!
This is exactly right! Thank you for listening and your beautiful reflections
I’ve been dealing with the boat rocking, body tingling, and double whammy of actual inner-ear problems requiring the occasional epley for seven years. Lost a lucrative job, spending the second half of every day in bed. It’s insane. I’m using the Curable app and anything else I can try, but it’s been a slog. These videos at least give me hope there’s an end to the tunnel, so thanks for all you do.
I can so relate. So good to hear of Kristin's success. I've had this for over 10 years, searching for answers and feeling so frustrated and confused. I was actually relieved to have a diagnosis last October. I can't find a doctor to guide me (other than telling me to go to PT) and I've overwhelmed just trying to figure out what will help. Still trying to find a PT who has experience with PPPD (tried 3 to find out they had never heard of PPPD, had never treated it, etc.). I now have even more anxiety than before I knew what was going on. I, too, was spending a lot of time in bed, trying to calm the lightheadness and nausea--getting more isolated and getting less done and seeing no way out. Never knowing when the dizziness will stop is so difficult mentally. The brain fog that few speak about. Cognitive fatigue is so real. I will keep trying new things to calm my nervous system. I'll try this type of yoga. Look forward to Part 2. Thank you.
What Kristin describes is truly the way out. You can do this!
@@TheSteadyCoach Thank you! I'm trying to stay optimistic. It's hard for me to watch these videos for some reason. It's a very difficult acceptance. I appreciate your videos.
Thank you for listening. Practice lots of self compassion during a time of so much uncertainty. Sending love and healing through this difficult time!
@@krisltownsend Thank you so much for sharing your story and the kind thoughts.
I hope you feel better soon, I'm going on 6 years of dizziness, rocking. It's very frustrating.
Ive had this since 2017 any physical stimulation worsens it but its something im just used to now unless it gets aggressive. Cant drive or run around etc but i was diagnosed with Menieres in the early days. Im from the UK and actually had to explain what PPPD is to my consultant and he googled it on screen in front of me and agreed this is what i have so basically trained him up lol
Thank you for sharing, Dr. Yo and Kristin. Your labors are greatly appreciated. By God’s grace, I continue to move forward in my recovery, and the success stories continue to provide encouragement. My dizziness is not there most of the time, and I have lost much of the fear of my symptoms. Funny thing, though, my brain has stepped up the anxiety. 😂 I’ve been telling my brain, “It’s okay. I’m safe, and I’m not afraid of the anxiety, even though my nervous system keeps getting activated.”
It’s happening! I’m getting closer to the mark!
Thank you, again, Dr. Yo, you’ve been a great help.
Fantastic! May I know what helped you the most?
@@manikantabadam Absolutely! My faith and family have been the biggest component. I am also concentrating on dealing with past issues that have contributed to my hyper-vigilance. I continue to work on my nervous system through sympathetic breathing and vagus nerve breathing techniques. I also believe that my turning point came when I started relating to my symptoms differently. Although it’s an ongoing process, I am not relating to my symptoms and body through fear. I think that somatic tracking has been a big help. Lastly, I work to maintain a positive attitude and have good days, regardless of how I’m feeling. For me, it’s been a slow process, but I can see how much I’ve come along, by God’s grace.
@@manikantabadam Absolutely! My faith and family have been number one. Symptomatically, my turning point came when I began to relate to my symptoms and body differently. I was full of fear and anxiety over my symptoms, etc. It’s a working process, but my fear has come way down. Parasympathetic breathing, vagus nerve breathing, somatic tracking, and positive attitude have been really helpful. Regardless of how I’m feeling, I try to live life positively.
You are on the right track!!! So glad to hear of your progress!
Yes, yes! Keep telling yourself you're safe. I used to have a mantra I would tell myself "I am grounded, I am healthy, I am safe in my body" while I practiced deep breathing. Thank you for listening!
I love these videos and am very thankful for them. Something I notice is that.. this is something we will deal with forever. 🤔😑
I don’t think the dizziness or odd feelings ever go away? That is the pattern I’ve noticed from a lot of the videos. What are your thoughts Dr. Yonite? I certainly want to live a normal life again- my personal experience has been almost complete recovery… a little over a month, almost zero symptoms and now feeling back at square one again. Stuck in bed again… how can this be? I’m starting to have the ear fullness again. The dizzy, falling feeling, the being pulled to one side…
It is normal to have ups and downs like this. It does NOT mean it will be like this forever. These are worth a watch for you: ua-cam.com/video/v6f-gFy2VxA/v-deo.html and ua-cam.com/video/wOS5IFXJueU/v-deo.html
Wonderful interview. Thank you so much. I’ve just started holy yoga. I’m 69 and a bit stiff, but I’m looking forward to getting better and better at this practice. If it helps to improve my PPPD it will be a bonus.
Amazing! Well done!
Great interview so hopeful x
I’m dealing with the loud ringing and hearing loss… I don’t have meneires , but migraine/vertigo, triggered by weather changes only. I’m fine when there are no storms… so weird .
This was a very helpful interview. Thank you.
Overthinking seems to be a common issue in this DX. Catch yourself! It stood out to me that she said she had lost All Her comforts after her divorce and Covid.
I so needed to hear this!!! Thank you!!
You're very welcome! I am glad that you found this video at the right time!
Thank you Kristen!
Sorry, Kristin
Thanks you two!! My last name is Townsend also, I hope one day I’ll be a recovered Townsend!
YOU WILL
Townsends unite! Thank you for listening!
wow....I have had so many similar experiences!!
Tongue tie release helped me a lot with my muscle tension and breathing.
I can relate so much to this. My dizziness started after having covid. Every test was normal included MRI and balance tests.
Then after vestibular therapy, I had 6 weeks of normalcy. I got covid a second time and the dizziness came back. July 2024 will be 3 years for me. I am 85% better but still not there yet. I do eye exercises and optokinetic videos every day with hopes of getting 100% better. I'm finally working from home again and feeling somewhat better when in a public place.
I too, thought it was an issue with my ears. Stuffiness, muffled hearing, tinnitus, even occasional twinges of pain. I was on allergy shots for 6 months and it made it worse. After seeing a 4th ENT opinion, he suggested my overbite was causing me to grind my teeth and causing inflammation. I saw a tmj specialist and did splint therapy for 6 months , had adult tongue tie surgery and have now been in braces for 5 months. I feel like things are finally improving.
I can relate 💯 ENT ,GP Crainofacial , self care...nothing seems to help. Getting frustrated with symptoms. Don't know what is causing what 😔
@nanishah5186 I totally understand. I have basically done multiple things to try to get better and I can't say for certain what has helped or of it's been a combination of things. It's a tough road to travel and I hope that you find some relief soon.
Glad to hear you're on the mend, Elaine!
Mine started after covid as well
@@angelenabusse6198 I am sorry. It is the worst to go through. I hope you're doing better. All of my drs say covid had nothing to do with my dizziness.
I got tinnitus after having a c section and having shingles at the time of the birth of my youngest in 2017. It was only in one ear though. But in October 2020 I started having POTS and dizziness and major anxiety and depression. I developed a goiter and then had my thyroid out. Then found toxic mold in our hvac and left our house and things. Symptoms worsened after Covid and I could hardly walk. I’m working through this process. I have had all of the testing done and I have 30% hearing loss in my right ear but they said nothing else would cause this.
I love this. I am in another flare up of symptoms, but I'm trying to stay calm about it because it has passed before and I am trusting it will again. I know a lot of your viewers don't relate to the anxiety component of this, but in my case there is a huge overlap between anxiety and dizziness, and pain as well, as it sends those fear messages. How do we deal with all these different components? I am doing therapy but honestly I don't see it making much difference to symptoms, but then again I am very outcome focused so that's an issue as well.
You nailed it in your comment. It's totally natural to be outcome focused but that is going to keep sending your brain a message that the symptoms are dangerous. The good news is that for people with anxiety, that is the number one most important thing to work with- once you do, the other things will resolve as well.
Hi Dr.Yo. I am still waiting for when I will feel better and live my life again. I have gotten to the point where i cannot even lay flat at night because i am scared i might set something off so i sleep on 3 pillows every night and it is not comfortable and my neck does not feel nice and relaxed but still because of fear i do it. I recently found out about upcoming family events I need to attend and my stress has been high all over again each day i am feeling the sensations again even when i am not doing anything and i feel like im bringing things back and having a setback even though that is the last thing i want. i don't know how to move forward with this because i have trapped myself to my room again and just lay down all day and night and it feels horrible to be wasting life like this and i have been feeling visual sensations again and unbalanced and lightheaded which when that happens it increases my stress even more and i feel as im obsessing and constantly overanalyzing my body each day again and i dont understand how to get out of it it is very frustrating and i feel like such a disappointment to myself and my family i don't know what to do Dr.Yo
Dr.Yo, I need your advise. I recently started to seeing a vestibular physiotherapist at my local balance centre for my dizziness ( It triggers by walking. Big shopping malls, concert where we see lot of movements of people, trigger my rocking, swaying feeling..not like vertigo spinning dizziness). So, this physio therapist saw my old full vertigo report and said about Reduced VOR gain ( from DVA test ) and Caloric test with CP-Right which is 20 a border line measurement, is causing my dizziness. They started with some head movements exercises like moving Side to Side, UP and Down while looking at an image of X on window glass. Could you please explain how those two vertigo test results ( Reduced VOR gain & Caloric test with CP-Right which is 20 ) affect my balance? Do you think that would be the reason for my dizziness? The other tests MRI, bloods..etc..all came normal. I would be grateful for your time.
I don’t know how I would even begin to approach a yoga exercise with every movement of my head exacerbates symptoms. Is this something that you do after you are somewhat recovered? Just standing still for a few minutes is difficult.
Yin yoga does not require a lot of movement. We will talk about that in Part 2
I know what you mean. I kept trying regular yoga, not knowing I had a vestibular disorder and the legs apart (or the other one together) and hands down to the floor would make me so sick with all the blood running to the head. I couldn't figure out why something that seemed like it would make me feel good caused me to quit going. Esp. when the teacher singled me out to do a headstand against the wall. I don't feel nearly as bad about it now knowing why it affected me so badly.
Do you find any connections with Hashimoto’s and hypothyroidism and vm and pppd? If so does the same hold true for improvement such as somatic tracking, mindset etc? Or other things to help if it’s connected?
I see the same Neurologist and Psychiatrist in Blue Bell. Would love to connect with Kristen. I had all the testing except for calorics. I was told by Audiologist at Penn no vestibular weakness. I’m struggling whether I need to repeat the tests to include the calorics? My neurologist says don’t need to because all other tests including rotating chair showed no weakness. What are your thoughts? The Penn ear specialist won’t see me unless I go through all the testing again including calorics. I’m chasing a fixable problem and swear I have inner ear damage. I also developed corneal neuropathy which they say is coming from my brain and possibly the trigeminal nerve. Have ringing in both ears high pitched which started a week after vertigo. Eyesight blurry, tons of floaters. Wondering if COVID vaccine caused it. Ugh. I am happy for you Kristen! 😊 I will be two years May 23, 2024.
I relate
Only you can decide if you want to keep chasing the diagnosis - I know the not knowing is so hard. Worth watching this one if you haven't already. ua-cam.com/video/y6UQmNSnVFo/v-deo.html
I have been having the exact same experience as her. My neurologist just scoffed at me when I said I fit all the criteria for PPPD. He said it’s a made up concept. It’s just anxiety and I need to accept to move on and recover 😅.
Wow I’d sack the doctor . This is sadly too common but shouldn’t be acceptable at all . Sorry this happened to you !
So invalidating. My neurologist told me we only had 20 min. and I couldn't ask any questions. My ENT told me "no way" were my cognitive issues caused by a vestibular disorder and I asked why VEDA's website talked about it and she said it was "misinformation" and sent me to the neurologist to see if I have dementia or Alzheimer's... 20 more tests for that, but it's probably psuedo-dementia from a host of other things. I haven't had anyone tell me vestibular orders don't exist. I have fibromyalgia too, since my late teens and have had many doctors tell me that doesn't exist either. I'm really learning doctors don't know as much as I thought they did--and many are very close-minded.
I think this is a better explanation: ua-cam.com/video/4QDFGvHGURc/v-deo.html He's on track but it's not just anxiety
Kristin, can you share with us whether or not you were able to get to where you are without meds?
I guess I’m confused (toward the end of the convo): why would it take a year to get that last 10%?
It won't necessarily. I just like to follow up with people in a year.
15:05 what type of exercizes are mentioned? If someone knows ❤
Yin Yoga
More on yin yoga in part 2!
@@MonicaHaskin thank you!
Do people have recovery after years of these kind of 24/7 symptoms eg tinnitus, the constant rocking boat feeling? I have never heard of anyone recovering from tinnitus after suffering for years. I have been in this 24/7 state for over 3 years and am giving up hope that my chance for recovery is long gone. It seems many of the recovery stories are from people who have suffered in months and not years. I also have a visual problem that I don't hear discussed much. I started to need multifocal glasses 6 months into all this happening, before only reading glasses. I have been to different optometrists and an ophthalmologist who all agree on the script but I just can't adjust to the glasses. I take them on and off all day long. My eyes vary day to day or even hour to hour. How do other people cope when they need multifocal glasses? It's like I need the glasses for my sight but they make my constant rocking boat feeling even worse. Between the tinnitus, constant rocking and eye issues I'm almost our of hope.
100% similar symptoms I have for last 6 months. Got my multifocal glasses but they are making it worse. They only help when driving. If I dont wear, I see thing blurry that 30 to 40 meters away. I never had issues with my eyes in the past, never had glasses. Seeing a Vestibular specialist but their exercises not helping. I might join Dr.Yo’s program once I rule out any medical issues. I m in the process of that now
Have you heard of feeling like your falling while laying down. Not when your asleep. Just laying down with eyes closed?
I was dx with Pppd . It's been 1 year. I'm constantly feeling like I'm dizzy, swaying, rocking, floating. It's complwte torture!
Hi Angelena, you are not alone in this experience and I do hear this symptom often. You are on the right channel!
You mention autoimmune issues. Do you feel people should get tested for this if all other testing negative and symptom have improved but haven’t completely gone away?
I think it's a good idea to see if that is playing a role- but I always hesitate to recommend more testing if someone is dealing with a lot of fear and anxiety.
Does she still have menieres ? I have menieres so I feel it !
Didn’t understand how she become better only with yoga?
Maybe worth a second listen. She describes what yoga helped her achieve.