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I deeply appreciate you sharing your thoughts on faith and god/God - if there is one. Your feelings are valid and if there is a god/God, how could they let us suffer. This video was filmed almost 7 years ago and much has changed with my own beliefs since then. I have not seen this video in years and rewatched it so I could respond to your comment. I will be editing out those couple sentences about faith that was true for me then but no longer is. My heart is with you because I hear how much pain and suffering you are going through. It is hell to suffer day in and day out. I understand what you said about not living. Years ago, I used to think that there was purpose in suffering. Now, I do not think/believe this. I can't stand when anyone says "there a purpose to your pain" or some sort of permutation of that. Suffering is a part of my life and it is a hell I daily endure. I choose to find the best life in what I have, but not because of or for a god, but for me. No one is rescuing me. I rescue myself. I set myself up to have a good mindset - take care of my body- be in control of what I can be in control of - to hold onto the bits of peace I find here and there. Meeting fellow sufferers and sharing this rough journey is so meaningful to me - that we can be in community and try to get through it the best we can together. It has helped to make life as good as it can given the circumstances I live in - the state of my brain and my nervous system and other parts of my body that are malfunctioning. Sending a hug your way. You're not alone. Thank you for sharing.

sending a hug your way

I'm sorry to hear that your migraines have not stopped. You mentioned Botox - have you tried any of the CGRP inhibitors (Aimovig, Ajovy, Emgality, Vypeti)? That is wonderful the vertigo has not returned post surgery. I agree, any respectable doctor will not perform VNS in both ears. There are many reasons other than Meniere's that can cause vertigo. I also agree that acceptance is such a freeing thing! Thank you so much for sharing some of your experience. I'm sending a hug your way. MD and Migraine attacks are a tough journey to walk down. You're not alone!

@ I have tried all of those type injections. But they did not work. My migraines start with tension and then wraps on the back bottom. I forgot what the medical term is for the bottom of your head but the surgical scar sits on a very tender part of my head and that’s one reason Botox helps so much.

I also know that neck injuries can cause vertigo which. I do have problems with the neck. I was in a serious car accident years ages. Your body holds on to trauma. I work hard to calm that trauma. A. VNS surgery is traumatic to the body. It takes a couple of years between the brain adapts to having one balance nerve. It’s a muscle and has to be exercised every day. I make myself do the things I hate.

Agree that sunrise was soooo grogeous! Just to clarify- the sunrise was only on the day of surgery. It didn't happen again, I was just flashing back and showing it again. Sorry if that was unclear. I don't believe that everything happens for a reason, but I respect that you do. 💜

@@IncredibleAnyway i re read my comment and i wasn’t clear. I saw that sunset / rise and i was like ooh that’s a God wink so to speak that everything will work out!! I was typing on my old iPad before.

yes! I have used the Abridge app and still have it on my phone. I think I even demonstrated it on a vlog of mine when I saw the neurosurgeon for the first time. I usually forget to get it out and use it though. Thank you for reminding me. I first saw it on The Frey Life. I love the idea of that being done like a court transcript and sending that to every patient!

He used to, but as he has gotten older, he doesn't need it every day. I try to pay attention and if he seems to need to get extra energy out, I will put him on. it. Otherwise, he only goes on it when we are going to leave the house.

That is too bad you had a reaction to the Aimovig. I do not have experience with Emgality personally so I cannot speak to it. But if you have issues with the Emgality, you can always switch to Ajovy after.

@@IncredibleAnyway Thanks, which one did you like better Ajovy or Aimovig?

Vertigo is a hell I wish I could rescue everyone from. I wish I could banish it from existence. In this hell, I've found people like you who are such beautiful souls and I"m truly thankful for that and you. We understand deeply how horrific this is and it is a gift to have someone else say "I see you" "I get it" "You are not alone" "We will get through together." Grief is so intertwined with chronic health issues. And the worst physical symptoms can dig up my deepest griefs and pile them on my back. I also hope that your horrible symptoms wash away as well. In a couple videos, I'll share a more real-time update on the vertigo and what was happening here. I am doing better vertigo-wise now. :)

@@IncredibleAnyway Thanks Kelly! I really appreciate the feedback and updates, stay strong!

Thank you for seeing me and empathizing with me. Yes! Tranquility and peace are what I wish for others as well. Hoping you can find some in your day today.

There is no cure for meniere's disease. Including surgeries. Have you tried Gentamicin injections? Many find success in eliminating the vertigo with gentamicin injections. If those fail, there are two surgeries that are often considered: Labyrinthectomy (which is only done if someone also has severe hearing loss) and Vestibular Nerve Section (which is a brain surgery). I have had the Vestibular Nerve Section and it is an extremely difficult recovery. I had it 1.5 years ago and I'm still recovering. I would avoid it if you are able to. If you haven't tried gentamicin injections, please do. See a neurotologist who can give you information on this. THe ony reason I had hte VNS is because the gentamicin injections failed with me, which is VERY rare. Here is a playlist I have on gentamicin injections: th-cam.com/play/PLTGnpduSk6I2LLWmIkjkWfdS4w-tKPvOJ.html

yes i tried gentamycin injection...but after 6 7 month symptom come back....

Thank you, my dear friend. Your words me more to me than I can say and exactly what I needed to hear today. Very much a balm for my hurts. Excellent insight that emotional responses to our health can bring up the deep wounds. Sending you so much love back. 💜💜

Thank you so much for your kind note. Vertigo can be so disheartening. Thank you for your prayers and support from Japan!! Sending warm thoughts and prayers your way.

Thank you! I am! :)

Thank you! He really is such a good dog.

He was everything. I'm so grateful to have him.

They are! I don't know what I'd do without my dogs. What gifts they are. How sweet yours were curled up with you. :)

hehe yes!

That would be such a great job for a retired service dog. Unfortunately, Bene had some home handlers that rough housed with him while at ECAD which taught him that when he is off duty, he doesn't have to be gentle. Anyway- despite me tryign to work people, Bene is way too strong when he greets people, so I rarely allow it. If he is calmer when he is older, I may change my mind.

Thank you for the encouragement!! Bene is the bestest boy. 💜 Expectations that recovery would be the same as it had been for 11 months got me. I forgot that *anything* can and will happen esp with chronic illness. Sending a hug your way.

He's my star. :)

Thank you for the hug and the validation and the empathy! ❤️

Hi! I'm so glad you found this video helpful! I don't know if you've seen or are interested, but I filmed the day of surgery and almost every day after. Here is my video discussing the surgery (before I had it): th-cam.com/video/PL7eOQcCp6o/w-d-xo.html The video of VNS surgery day is here: th-cam.com/video/16l42lEVCh8/w-d-xo.html Video in teh hosptial post VNS surgery: th-cam.com/video/MRdSnJmyw_I/w-d-xo.html The playlist of all the post-VNS surgery vlogs are here: th-cam.com/play/PLTGnpduSk6I2cOsSv96EGOa1mCegJ7vVG.html. I made these videos for people who are going to have the VNS and are curious what recovery is like as I share my experience. If you have *any* questions, I'm happy to answer them. I am now a year and a half post surgery. It is a very long healing process. But, it was so worth it to be and a wonderful thing to not have any more Meniere's vertigo. Wishing you all the best! Here for you before and after your surgery if you need an ear.

@@IncredibleAnyway ...My flare ups are cyclical... we have a suspicion they are related to allergies but as you know, it is almost impossible to know what is the root cause of Meniere's. I saw enough of your video, post op and a little bit before to know that it is going to be a much harder recovery than I thought it was going to be... I'm anxious about it and fearful of the potential risks.... is it worth it..? now that my flare up has subsided, its easier to consider not having it... my doctor said that when you are in a flare up, you will say yes to anything that promises relief..thats why she waited until it was "clear" to consider the surgery. I keep a diary and log all my symptoms and feelings associated with it... so after recording my log for her, I submit a log report with each six month update appointment.. I decided it was something that I would like to have done and my main rationale is this.. I'm a very active 67 year old.. I'm an outdoor person and live on a 5 acre "ranch"... I cant imagine an 87 year old woman going through these vertigo episodes... so, I'm doing this for my elderly self... I just need relief... thank you so much for putting this togehter.. yes, it meant a lot to me... you made yourself so vulnerable... thank you again...I'm meeting with surgeon mid December..The confidence I have is that he and his wife, do research in Meniere's at a research hospital university... they have been wonderful to me.

Thank you for sharing with me. I understand needing relief. And I also understand wanting to make decisions now for your older self especailly when you are so active. Forgive me for asking - have you tried gentamicin injections? I'm guessing you have since you hvae gotten this far in the treatment process and have a doctor that researches meniere's. Just curious how they affected you. The recovery is very challenging and long but if you ultimately decide this is the path for you, you can do absolutely do it. That is excellent you have confidence in your surgeon - are you referring to the neurotologist? I also highly recommend researching the neurosurgeon as well as they will do the bulk of the surgery getting in and out and do the majority of what makes brain surgery so high risk.. As my neurotologist put it, his part of hte surgery is very quick compared to the neurosurgeon. I hope you are as well as possible today. And if you are flaring, I wish you a moment of peace.

Thank you- I will talk about the cause in upcoming videos as I see the neurotologist. The short answer is no- it's not bilateral.

@IncredibleAnyway That's good!

thank you janet.

Thank you for your empathy, Kelli and for your words. I truly appreciate them. We are fighters! And we will keep going no matter what because we want good lives. Sending love back your way!

Oh Helen, thank you for sharing my emotions with me. It was such a devastating setback.

I'm glad that the video was helpful and validating. It's okay to be scared. It's okay to feel what you feel because it is real. And Meniere's is a tough health issue to have. I will tell you that even if the worst happens- you will be okay. Because the worst happened to me and I'm okay and I have had a good (even though hard) life. But I encourage you to take one day at a time. You are not alone in this. You will get through. (And its still okay to be scared and feel your feelings!) Sending love your way in this diagnosis journey. Here for you if you ever have a question!

I love that you aren't denying who you are and being you! That is the best thing we can do for ourselves is be who we are unapologetically.

@@IncredibleAnywayThanks Kelly, it means a lot to me.

Aww I love that- my parents do have Bene and Dash and they had the 4 dogs I had before (Knightley, Zoe, Giselle & Casper). :D THank you - I love their pups like my own. And I miss them when they are gone!

Thank you Emily. It's so hard sometimes.

I think it’s normal to do that at least for me. I question my purpose at least 1x a year at least

@ChaiLatte13 It is so hard when our lives don't go the way we had hoped or expected. There is valid grief to be had. Sending hugs your way.

Thank you for sharing yoru experience this adn that you do this too. I think society teaches us that we aren't supposed to bother others with our pain and that is a hard mold to break from. Also, sometimes people perceive people as expressing pain as weak and that is the last thing I want to be seen as. Excellent point about a safe place. I think the environment outside my house/my bedroom can make my chronic pain/migraines other symptoms worse and if I allowed myself to express how I feel even to myself, I'd break down with how overwhelming it'd be. That is so interesting as I mask and mirror others too. Thank you for talking about it. Unsure if the way I understand masking/mirroring is the same way you mean it. I have done it as a coping mechanism to be more "likable" to others - so they won't turn away from me because of "sick talk" or saying things that make them uncomfortable. I don't like that I mirror people because it means they see themselves in me and not me. It is like I'm removing my own voice of who I am. But that is a whole other conversation! It is hard when people want to fix us. I often think it is out of love or wanting to help. But they don't realize that often what we need is for them to stand/sit with us in it/to support us - not to tell us what to do. I once had someone legitimately tell me to put a banana peel on my head an it would cure my migraines! If only... Telling mom hello from you! Thank you again for the chat. Helps me to process it all myself. :)

The filming was a coping mechanism to help me feel less alone. Having "someone" to talk to as I moved through an attack helped me to feel like I could do it. It empowerd me. I filmed often and for a long time before I ever posted anything on youtube. (This was filmed in 2015 and the first thing I ever posted to youtube). That is excellent that betahistine and dramaine help end the symptoms in an hour. I was not so lucky to find help from acute medications like that.

Thank you for sharing all your wisdom! I hope everyone who watches the video also reads your comment! It is so important to move through the stages of grief to acceptance so that we can live with the pain. My channel is called "incredible anyway" becuase I want to live a life that is incredible anyway - with the chronic health issues - to have an incredible life no matter what my circumstances. It may not look like other people's lives, but it is teh best life I can live. And I hear you doing just that. It doesn't mean we dont have pain - we do - and it's hellish at times, but we find a way to have a life - to get through. It is so hard on family. I agree. I have *never* heard of someone's rib being taken bc of a headache. That is a first for me. Too bad it didn't help since you went thru the surgery. Oh dear about your doctor asking if you have a headache today. All the best to you! Keep fighting and persevering!

It can be true that neck pain can be related to migraine, but it is not true for all people. Not all pain is related to migraine. Often people who are hypermobile also have EDS which is incredibly painful.

What is highly linked to autism/adhd?

​@@IncredibleAnywaymigraine fybromyalgia i found out ime diagnosed late aftee decdes symptoms and heds

I'm sorry to hear that.

Bene loves opening boxes no matter what is in them, but I'm sure these smelled good with how much he nose-booped the box! hehe

You know- there are people who don't have our chronic health issues who vomit it up, so I think it is hard no matter what sometimes. And certain brainds seem to be worse than others. I'm thrilled for you that you got through the prep this year after testing to see what state your body needed to be in. Well done for trying again! As you said, it's such an important preventative test! Happy to see you/hear from you!!

Thank you so much for sharing with me. I'm honored that you would! I completely agree about the fears of the repeal of the ACA. It is terrifying for me as well as I and so many people I love and care about will be in the same boat - without health insurance or in the least affordable health insurance. I can see why you'd be extra affected because you went through this before hitting the wall of insurance companies not covering you. That sounds lik e a living nightmare. Preexisitng conditions clauses terrify me. But if I focus on it, I would live in a state of constant panic. I've learned with my chronic health issues, that I can only control what I can control and the rest, if I spin about it, it will always make me worse physically. Its so much easier said than done. My therapist often says to me "But what if things go well." when I start to get anxious about things. And he is right, things often go well and the worry and fear and pain I put myself through ahead of time was self-inflicted and I'm worse bc of me - not the thing I was worried was going to happen. Not to say that these concerns arent' justified - they are. And I don't mean to invalidate your feellings bc they are completely valid. I share them. I guess my survival mode is to figure out how I can get through this time period the healthiest mentally adn physically as possible. And being worried about it doesn't serve me. I take control of what I can. I can do things to speak up against the repeal ect. I try to get a good mind game. I am trying to focus on the now and that I have insurance now and I'm so grateful for that. And when/if it does get repealed, I will deal it adn those emotions then. I just dont' want to borrow from tomorrow's problems bc I have enough today. I am sending a huge hug your way. You are not alone. SO many of us are in this boat with you. We will do everythign we can to stay afloat and make sure that the ACA isn't repealed. Give Henry a cuddle from me.Again- I'm SO happy to hear from you! :)