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My Ramsay Hunt Syndrome Journey - Week 1
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After realizing how rare this is and how hard it was for me to find information on what had happened to me, I wanted to share my story for others to find and to bring awareness.
❤❤❤This is for educational purposes, all negative or nonhelpful comments will be filtered, blocked and deleted❤❤❤
I personally know my limits and my mental health tipping point is wobbly at the moment. Healing for me means a positive and as stress free as I can get it. This is positive space for sharing ideas, learning, healing, researching, and awareness.
If you have RHS, your symptoms or progress will more than likely be different than mine. Please definitely consult with your trusted ENT, Neuro, GP, or any other specialist that has seen and worked with RHS before. When you are searching for one, ask them. If they have not worked with it before, keep looking. It's exhausting but keep going until you find the right help.
Here's my story in words...
When I went into the urgent care on Dec 22nd, not much touched the pain for long but it wavered enough for me to hit the ground running trying to research the hell out of what this could be and find others that have gone through it. When I found out it was rare, of course I was like, oh great! And that's what brings me here. I found people on reddit talking about it which is how I knew about the nerve pain relief from Lysine when gaba doesn't touch it and got on it immediately. I will start dropping my update videos in here as the come, to keep them in the same place for people who are just joining us on this ride. And maybe we can all add to the tips that we have all found that make this journey just a little more tolerable. And thank you to those before me who showed me some very valuable tips that I am actively using. I would have never known!
I think it is also important to understand that we all heal different and when searching what has worked or not worked for others, get their full history of what they have done and taken so far to better understand and apply to your situation. It’s easy to get discouraged, too easy. Charge forward! Find something that feels good to you (for me it’s day dreaming of a backyard oasis, I’ll save inspiration photos and imagine it’s greatness one day), then come back with a fresh mind and continue your research.
*** This is also very important ***
Any information provided including medical advice should be talked with your trusted medical advisors. Acting upon that advice is your decision and at your own risk.
Just sharing my full story, take what you will from it and do your personal research for your personal scenario.
I just found an RHS support group a week ago and it has already been so incredibly helpful with techniques and tips. A lot of docs and specialists don't know about these, they need to, from people like us. For the people who come after us and for the people who on this journey with us. Share with your docs your findings, ask questions. Ask how the body works from their experience. Every specialist you go into, ask "have you treated RHS before? What were your findings? How are you able to help my RHS?" If they don't have much experience or can't answer, find another specialist. Advocate for yourself. If something doesn't feel right, say so. Come here and tell us, we'll help you find the words to express and help you find another avenue for help. If you are in the Austin, Texas area, message me. I have a list of resources to help.
I wanted to document my journey for others like me who have zero info and have no idea where to go. A positive step forward during a scary obstacle we are all faced with. I personally need a positive place to heal or I go down a spiral of ruminations (thank you childhood trauma/adhd/anxiety), I've got those bits to manage through this as well but as long as I am aware of them, have the tools to combat them and have a support system through family, friends support groups and specialists that know RHS and can have a dialogue with me and entertain my ideas and questions, I can manage it and focus on my healing.
I find it is helpful to note my meds and all things I’m doing for others to get a better context of what is in my system and what worked for me personally. I have posted what I have been taking in the comments. It’s helped me immensely when others have done it too. I have also learned that it has been helpful for every specialist I meet to describe in detail my findings and reactions. In turn, I ask what everything does and how it works so I have a better understanding. I’m grateful and appreciative for every convo and idea entertained. I never felt rushed or that I was asking dumb questions. They all seemed to really like that I wanted to know.
❤❤❤ If you are in the Austin, Tx area, I have a wonderful team of referrals that I have found to give you. Send me a message!
❤❤❤This is for educational purposes, all negative or nonhelpful comments will be filtered, blocked and deleted❤❤❤
I personally know my limits and my mental health tipping point is wobbly at the moment. Healing for me means a positive and as stress free as I can get it. This is positive space for sharing ideas, learning, healing, researching, and awareness.
If you have RHS, your symptoms or progress will more than likely be different than mine. Please definitely consult with your trusted ENT, Neuro, GP, or any other specialist that has seen and worked with RHS before. When you are searching for one, ask them. If they have not worked with it before, keep looking. It's exhausting but keep going until you find the right help.
Here's my story in words...
When I went into the urgent care on Dec 22nd, not much touched the pain for long but it wavered enough for me to hit the ground running trying to research the hell out of what this could be and find others that have gone through it. When I found out it was rare, of course I was like, oh great! And that's what brings me here. I found people on reddit talking about it which is how I knew about the nerve pain relief from Lysine when gaba doesn't touch it and got on it immediately. I will start dropping my update videos in here as the come, to keep them in the same place for people who are just joining us on this ride. And maybe we can all add to the tips that we have all found that make this journey just a little more tolerable. And thank you to those before me who showed me some very valuable tips that I am actively using. I would have never known!
I think it is also important to understand that we all heal different and when searching what has worked or not worked for others, get their full history of what they have done and taken so far to better understand and apply to your situation. It’s easy to get discouraged, too easy. Charge forward! Find something that feels good to you (for me it’s day dreaming of a backyard oasis, I’ll save inspiration photos and imagine it’s greatness one day), then come back with a fresh mind and continue your research.
*** This is also very important ***
Any information provided including medical advice should be talked with your trusted medical advisors. Acting upon that advice is your decision and at your own risk.
Just sharing my full story, take what you will from it and do your personal research for your personal scenario.
I just found an RHS support group a week ago and it has already been so incredibly helpful with techniques and tips. A lot of docs and specialists don't know about these, they need to, from people like us. For the people who come after us and for the people who on this journey with us. Share with your docs your findings, ask questions. Ask how the body works from their experience. Every specialist you go into, ask "have you treated RHS before? What were your findings? How are you able to help my RHS?" If they don't have much experience or can't answer, find another specialist. Advocate for yourself. If something doesn't feel right, say so. Come here and tell us, we'll help you find the words to express and help you find another avenue for help. If you are in the Austin, Texas area, message me. I have a list of resources to help.
I wanted to document my journey for others like me who have zero info and have no idea where to go. A positive step forward during a scary obstacle we are all faced with. I personally need a positive place to heal or I go down a spiral of ruminations (thank you childhood trauma/adhd/anxiety), I've got those bits to manage through this as well but as long as I am aware of them, have the tools to combat them and have a support system through family, friends support groups and specialists that know RHS and can have a dialogue with me and entertain my ideas and questions, I can manage it and focus on my healing.
I find it is helpful to note my meds and all things I’m doing for others to get a better context of what is in my system and what worked for me personally. I have posted what I have been taking in the comments. It’s helped me immensely when others have done it too. I have also learned that it has been helpful for every specialist I meet to describe in detail my findings and reactions. In turn, I ask what everything does and how it works so I have a better understanding. I’m grateful and appreciative for every convo and idea entertained. I never felt rushed or that I was asking dumb questions. They all seemed to really like that I wanted to know.
❤❤❤ If you are in the Austin, Tx area, I have a wonderful team of referrals that I have found to give you. Send me a message!
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