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Sí, fue traumático. Muchas gracias por su comprensión.

Myheart goes out to you for having a headache for so long. That is rough you aren't able to see a neurologist. Sometimes primary care doctors can help with headaches if you aren't able to see a neuro.

thank you!!! <3

I LOVE that you pressed down and did the injection with me! Well done in doing the injection. It can take courage doing it. If you need an injection buddy next month, I've got you! :)

Thank you so much. It was a very scary journey. I appreciate you more than you know! hugs

❤

Oh my gosh what a nightmare they didn't see the meningioma sooner. Thank you for sharing your story. I'm so glad you will be able to get the brain surgery to get removed. An improved quality of life is such a wonderful thing to have in front of you with the surgery. Please keep me updated - I had brain surgery last year for Meniere's. Rooting for you.

Thank you so much for being here! I so appreciate it and your prayers so much. I'm taking it one day at a time. I hope you are doing as well as possible. :)

When the dose of allergens is low and my body is cool with it, it really doesn't hurt much.When the dose is higher htan my body wants to tolerate, it hurts as bad and worse than a flu shot.

@@IncredibleAnyway oh wow . That’s pretty interesting

I am able to do it via zoom. My dad holds the camera and my mom does all the test items that requires a helper. They started offering the zoom option during covid/after covid. I'm really thankful I dont' have to make teh trip, but sad I don't get to see anyone in person or see beautiful CT! And I defnitiely would've wanted to stop by and see you!

@@IncredibleAnyway hey that’s awesome!! Thank you lord for technology

Thank you. Hope your week is going well!

Thank you! Me too! Hugs!

With Meniere's, yes, hearing continues to decline no matter what the treatment. I don't know that tinnitus would get worse. Hearing can be affected by Gentamicin but only those hwo are genetically predisposed to have hearing loss from Gentamicin (4% of the population).

Oh I hope the Ajovy makes a difference for you! I have so much hope for you. Let me know how it goes!

Every person will respond differently to these medications. In the studies, about 50% of people found 50% reduction of their migraines from CGRP inhibitors. About 30% found 25% reduction in their migraines. And there are peopel who found 100% reduction. Out of all the classes of medications, these meds including Ajovy have been the only ones to affect my migraine disease. I am taking another medication in this class of medications called Vyepti. FOr me, Ajovy will help some for a good while and then stop working bc antibodies build up in my system adn I have to switch to something else adn tehn I can switch back. I believe in you. I know that doing an injection can seem daunting, but you can do it. Just take one step at a time and make sure to breathe through it. I will sometimes play music to help me get through an injection or give myself a reward after doing it. I'm rooting for you! Let me know how it goes!

@@anthonypalmisano1533 Lorazepam is know to be addictive indeed. But when you need it you need it. ❤

Hi!! Thank you so much for reaching out! You made my day. That is shocking your doctor wouldn't let you use an assistive device until you were able to safely walk on your own. Did you lose the hearing because of hte surgery? Recovery is sooo slow in this surgery. I wish I had been prepared for that, but now I'm trying to accept it and embrace it. I understadn abotu lorazepam. I was taking it daily for years and did through most of my surgery recovery up until a few months ago. It took a long time for me to wean off of it because of hte physical dependence part. Slow changes so your body adjusts. You'll get there! I'm curious how you are doing now. Do you have balance or vestibular challenges still? Thank you again for sharing!

I just want to clarify that there is a difference between addiction and physical dependence to medications. Addiction is a psychological dependence on medication. Physical dependence is when the body is so used to the medication that it stops producing certain chemicals and relies on the chemicals from the medication. So the body is then reliant on the medication for those chemicals. It is why it can take a long time to taper off of a medication physically. The body has to start making the chemicals again on its own. That is my understanding anyway.

Hi Kelley! Yes it was rough getting around the first couple of weeks after surgery without any assistance with walking. My last day in the hospital the physical therapist brought me a walker but the doctor indicated I should not use it. The quicker you get moving the quicker you will heal. Of course I use the walls in the house to get around. As for did I lose my hearing in my right ear the answer is? YES. However knew this before surgery. I knew that the vestibular nerve and hearing nerve are not completely separate. Before my surgery I told my doctor make sure you cut it all! I don't want to experience vertigo again. And here we are nine years later and haven't had another attack of vertigo since the surgery. I've always tried to do some form of exercise my entire life. In 2019 I found yoga which is really been great. It helped me with Balance. However I'm not like I was before the surgery. I still get a little off-balance if I move too quick. Loud noises, crowded rooms still make me Uneasy. I'm currently taking one and a half milligrams of lorazepam a day. 1 mg at night and a half a milligram in the morning. I was on 2 mg a day just a few weeks ago. I would love to hear more about how you tapered off of lorazepam. I'm also worried if I do eventually come completely off of lorazepam will my balance become worse or will I have to start back at square one. The only reason I'm taking lorazepam is because I complained I wasn't getting any better. My balance was really off. That's when my doctor prescribed 20 lorazepam pills at 1 mg each and only as needed. He wouldn't prescribe anymore after the 20 he originally gave me. So, I found a neurologist that understood how I felt and wrote me a lorazepam script. I am thankful for the lorazepam because the last nine years are really been good. However, I really want to get off this stuff and see who I really am. I've often wondered if lorazepam would have helped me before surgery. In your comments you indicated you were on lorazepam before surgery. But obviously I understand now it didn't help that much. Thanks again for sharing Kelley. I've rambled on too much now. Thanks AJ

There was nothing dramatic in this video. That is great it is easy for you to inject, but it isn’t for everyone and that is okay. Needles make some people anxious or wary as do new treatmetns. I wish you peace and hope the Aimovig is helping you.

yes! It is exhausting! Thank you!

My recovery from gentamicin was very challenging and the veritgo and imbalance were so much worse at first. I’ve never been told that I had oscillopsia, but I will say that the world was always in movement. I don’t know if it is a normal reaction or not - that would be a good question for your doctor. But I highly recommend askign about vestibular therapy that can be done by a physical therapist. It is SO helpful in recovring from something like this. I did a short video on some vestibular therapy treatments I did after Vestibular Nerve Section. While the exercises can be hard, they help in the long run. I can see why he would wait to give the 2nd getnamicin. Your body probably just needs time to recover. Here is a video I made on my recovery from gentamicin: th-cam.com/video/QC2tWdA3akQ/w-d-xo.htmlsi=3mmtzqJxaOX91v_f Here is a video I made on the vestibular therapy: th-cam.com/video/QC2tWdA3akQ/w-d-xo.htmlsi=3mmtzqJxaOX91v_f I’m rooting for you. Recovery is rough adn it takes time, but I beleive it will improve for you. It took me at least 6 weeks to be functional again after the first few gentamicin injections I had. I’d also not hesitate to ask your doctor all these questions especially if things dont improve

@@IncredibleAnyway thank you so very much for your response. If I shake my head in the “yes” or “no” movement, or driving in the car, going over bumps, everything is jumpy and out of whack. Even if I do the therapy where you focus on a spot with your eyes and move your head back and forth, the object I’m focused on shifts around. It’s very strange. Could be perfectly normal, but I don’t know anyone to ask these type questions. Thank you for all you do and for your encouragement. Means so much to me and I’m sure many others who suffer from this terrible disease.

@@IncredibleAnyway I feel like I have been making slow improvements, but today I have felt like my bouncy vision when moving or walking, is back to square one. Did you have setback days or days you just didn’t feel like you were still moving forward? I’m only on week 3 after my gent injection, so maybe I’m rushing things. I’m able to walk, my vision just seems very off when walking or in a bouncy vehicle…shaking my head yes or no, I cannot focus on anything because the whole picture through my eyes moves. Is this normal from your experience? Thanks for everything.

I’m so glad that the injection went so well! That is fantastic! Well done! I’m thrilled the video helped you through it! You’ve got this. :)

I love that you have such a great SD! That is wonderful!

She really is. You’ll see her do this again in an upcoming video. It was really special to see it when I was editing it. I’m SO thankful for her.

thank you!! woot! I did it!

Oh my gosh, Good luck! IT is so hard to wait for your dog, but so worth the wait! Are you scheduled for team training yet or still fundraising? I’m escited for you-it is a huge leap of faith, but you will get to the other side. I will make a gear video when I can. My harness is from Bold Lead Designs. I do NOT recommend to get a tall handle like ECAD recommends especially if you are using it for balance. The closer your hand is to the dog, the better you will be balance wise. The higher your hand, the more torque youre putting on the dog and your body. Its not good for you or the dog adn you won’t feel grounded like you are supposed to. I have a video about this that I highly recommend you watch that I made about my harness adn how it changed thigns for me: th-cam.com/video/YXV5_sf95q0/w-d-xo.htmlsi=eTYiHXlSxbrcx3yA I actually spoke on the phone with the people at Bold Lead Designs and they guided me how to order my harness based on my needs and said the tall handle would be wrong for me. I highly recommend doing the same if you are confused or concerned. They know their hanresses way better than ECAD. And I am SO glad I listened to them. I know of people who got the tall handle and regretted it and then got the balance handle and were so happy. Please keep me updated on how your wait is going! Rooting for you.

@@IncredibleAnyway thank you! I’m done fundraising so the wait has officially started. I’m not scheduled for team training yet but was told i’ll likely be waiting until 2026. I’ve been binge watching your videos so i’m definitely planning on following your advice regarding the harness. I’ll be using it mainly for balance and want to feel “grounded”. Did you speak to the harness maker prior to team training or when does that happen?

I'm sorry to hear that you're dealing with the Meniere's symptoms. I have a playlist on my experience with Gentamicin here: th-cam.com/play/PLTGnpduSk6I2LLWmIkjkWfdS4w-tKPvOJ.html This video was filmed in 2015, so a lot has happened since then. Most people have a great experience with Gentamicin and find complete or almost complete relief from symptoms in 1 to 3 in injections. I am a rare case -Gentamicin is supposed to kill the hair cells of the inner ear. We found that my hair cells would die, but then resurrect, which is why the treatment wasn't effective for me long term. But my experience is *very* rare. Most people have success with Gentamicin. Some people get relief from steroid injections - its not destructive like Gentamicin is. I had help from it for months and months at a time. I have a video answering your question about how things are post Gentamicin, but suffice it to say, it takes several weeks. Vestibular therapy is very helpful afterward and I would highly recommend it. Happy to answer any other questions you have. Video on post-gentamicin here: th-cam.com/video/pFm3AM_Wb24/w-d-xo.html

@@IncredibleAnyway Thank you so much for sharing your other videos - I look forward to hearing about your journey. And am so sorry that you were the rare case that had challenges with the injection. Sending lots of hugs.

Hi that is so kind of you. I see a neurotologist (ENT that specializes in the ear).As the title says, I have Ménière’s disease which was the cause of the vertigo.

You can direct message me on instagram @incredibleanyway

Well done!!! I hope it is helpful for you and no adverse reactions!

Thank you!

Thinking of you and your poor brain. I bet it was a lot.Hugs

Thank you for the empathy. it was rough. My mom is amazing! I am so thankful to have her by my side. (And Bene too!)

Hey! Taking it one day at a time. How are you?

My heart hurts reading your comment because I have felt that way too. You truly aren't alone. This disease is hell. I am holding onto hope for you that you will have better days. You are a warrior for persevering - proud of you for getting through today.

I hate you are dealign with this. So smart to keep bags aroung the house. Its sounds like a nightmare. Vomiting and vertigo is hell. You're not alone.

Thank you, Alex for supporting me! I'm glad the videos have made you feel less hopeless. Chronic health issues - especially vertigo - can be so rough and disheartening. Your comments help me too and give me encouragement that I so need! Rooting for you as well!

@@IncredibleAnyway Thanks Kelly! Have a great day!

Thank you, Helen. I deeply appreciate that. Sending a hug your way.

Thank you for all that you said, Emily. I take it to heart - really. And I appreciate your support so very much. I always feel like you have my back. I have yours too. :)

You are so welcome. Yes! Service dogs save lives! I'm so glad the video was helpful. I absolutely need that reminder to be kind and gentle to myself - I struggle with that. You sound like such a warrior! Sending love back your way. You're not alone. :)

Well Done on your interview with Carlos! I'm SO proud of you!!! I need to learn Dutch! I love how we are aligning on what we are taking about. If everyone were the same, life would be boring. There's only one you - and I'm glad to call you my friend. 💜

Thank you for watching my vlog and looking out for it. It means a lot to me that you connect with what I'm sharing. Thank you for sharing that with me! I love knowing someone in Italia! 💜

That is kind of you. Thank you

​@@IncredibleAnyway thank you , yesterday I started therapy with Betaserc ( betahistin ) 👏, greetings from Croatia ❤️

Oh yay! I hope it is really helpful for you! I'm so glad you said hello

@@IncredibleAnyway Yes , I am much better today, and I'm not afraid 🌞🤗

I have not dealt with apathy. Do you think the apathy could be connected to depression? Depression is very common with chronic health issues like NDPH/daily headaches.

@@IncredibleAnyway It could be, but I don't necessarily feel depressed. Just apathetic and of course the headaches. I noticed that when the headaches intensify, the more apathetic I feel. It's super strange. Even just squeezing my eyes shut tightly gives me head pain as well as rubbing my nose.

Okay. I see. After reading your comment, I looked up apathy and read about how it can be different from depression. Have you seen a neurologist about the headaches? I read that apathy can be connected to some other neurological issues - doesn't mean that is what is going on with you, but it might be worth talking with your doctor about it and mention the apathy and how it correlates with your headaches.

@@IncredibleAnyway yes I already seen a neurologist. I just had an mri done for the brain. Just waiting for the neurologist to have a look at the images. Then I’m gonna get an mra for the neck because I told her I have a bad habit of chronically cracking my neck so it could maybe be that. The ultimately gonna get some blood work. But yes, the strangest part of it all for me personally is the apathy issue. It’s like I’m a whole new person who doesn’t care anymore. But thank you for taking the time to connect back. Much appreciated.

Oh that is good you got a brain MRI done. I can see why the apathy would be such a strange experience. I'd keep asking the neuro about it until you get a satisfactory answer. If you think of it, please come back and update me when you get the MRI results back. I wish I'd thought of this before, but I'm going to ask around my circle of ppl I know who have chronic headaches online if they have every had apathy or know someone who has and I'll get back with you if anyone has any insight.

i don't know much about it and know there's different causes ..like if someone can't absorb it like you :(

I tried the sublingual melts before my doctor moved me to the injections. As you said, I just don't absorb it well enough.