My son was diagnosed with CVS and battled this for 7 years. He was in the top 5% of severity for all cases. His symptoms were much like yours including the severe abdominal pain right at his belly button- so painful that even morphine couldn’t relieve it. He also had SATO syndrome which includes a high blood pressure component to each CVS episode. He was in and out of the hospital often. We saw Dr. Li in Wisconsin and it changed our lives! He is a CVS specialist who has dedicated his life to this illness. Our son has been episode free for 4 years now! Dr. Li helped us understand and manage this chronic illness for years now.
My daughter has CVS. She was diagnosed as a toddler and is now 16. She has very few vomiting cycles at this point but does still have the abdominal migraines, especially during times of stress. As a younger child, she missed a lot of school because of CVS. It was really difficult. The trigger for her most difficult times was any kind of change that caused stress (even good stress, like a vacation where she was away from home). Praying that things will start to improve for you. 💕
Thank you for sharing. I actually found your channel when I was searching for homeschooling mums with chronic illnesses. A diagnosis is such a relief. I pray for you and your family as you continue the journey.
Thank you for this video! I have had chronic illnesses ( mainly dysautonomia and gastroparesis) since I was 16. I didn’t think I could homeschool because of these conditions. They can be so unpredictable. One day (or minute even) I’m fine, the next I’m in the hospital. I have been having intense migraines with crazy GI symptoms for the past two years and everything your describing is exactly what I’ve been dealing with. I assumed it was just a new symptom of my preexisting conditions, but this might be abdominal migraines and cvs. I hope you continues to improve and that your recovery goes smoothly. Prayers to you and your family. God bless!
I'm so sorry, friend. I wouldn't with this on anyone. It's a really hard disease to shoulder. There is hope, though. God put the right doctor in my life, and although it can't be cured, he's got an action plan that has given me most of my life back. I pray you're able to find solutions. There are CVS support groups on facebook, although they are far from Christian. They do offer helpful tips.
Hugs Mandy! I just recently found your yt channel and love watching all videos. Thank you for sharing your story and so sorry about your grandma passing. I will keep you in my prayers 💖
Wow just wow! I have had fibromyalgia and chronic fatigue since before kids( it was a mystery then) and I struggle with it. You are a inspiration to me! This illness has so many components physical and emotional and it's beyond brave of you to share your story. Im greatly inspired by your poise and obvious joy for life although all has drastically changed and not as imagined. Its not easy-I know. I've had to adjust, reimagine things differently and give myself Grace daily but it took a while. Its a process. I remind myself that His mercies are new every morning and they never come to a end-His love is Steadfast and Faithful. Much Mama to Mama love.
I can so relate to that! God has given me so much grace in this. I don't know why He's taking me down this road, but I do know that it's for my good and His glory, ultimately. I keep reminding myself that almost daily. Thank you, friend ❤️
I will continue to pray for you Mandy!!! Psalm 46:1-3 "God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging."
Just wanted to reach out to God right now, lifting you up in prayer, declaring in His Holy Name that you will be healed and healing will soon come for you. Always remember you are never alone. You are surrounded by angels as well as your sweet grandmother's spirit. Rest in peace knowing that God has specifically chosen you to be a light to others and He will continually bless you. You, bravely sharing your health story, will help others suffering similar symptoms figure out they too have this condition. Thank you for all you do despite the suffering you've been going through. Blessings to you and your family!❤
Sorry to hear this! My daughter has CVS and abdominal migraines and it’s a big reason we started homeschooling. Amitriptyline has helped control the frequency and severity of her episodes although she still has them sometimes. It feels like our lives revolve around trying to avoid her triggers. Hopefully you figure out something that will work for you!! It must be hard being a mom with this illness, it can be sooo severe and unpredictable!
Im so sorry and I can relate. I have a seizure disorder and cannot drive. I have three young children and its very hard for me to have to depend on others specific my husband for everything. I hope you can overcome all of it.
My daughter has vomiting spells often. We thought it was a milk allergy but has issues with blood pressure. After reading about this I’m wondering if she has CVS. I am a migraine sufferer and all I’ve read CVS patients have a family history of migraine. Thanks for sharing. Now I’m definitely speaking to my child’s doctor. Prayer for your health.
It's definitely related to migraines. I see a neurologist to get treatment for CVS. My neurologist is the one who diagnosed me. I'd recommend finding a neurologist in your area and seeing if they can help ❤️ Praying you find answers!
Praying for you Mandy. You are such a lovely girl and I hope that God will heal you as quickly as possible. I’m glad you finally found out what is going on with you health wise. Prayers and hugs!🙏🏻❤️
Thank you for sharing your story. I have severe migraines. I have had them since I was born. I had the severe vomiting with my migraines when I was little. It stopped when turned 20. I still have migraines but they are not nearly as bad. I think I had CVS when I was younger. You finally gave me a name for how I felt. Thank you! God bless you!! I’m praying for you!!
Most CVS patients are children, so it's quite possible! It just never reemerges, and the person is usually fine the rest of their lives. I was one of the "lucky" rare ones who had it reemerge when I was 34. Now you can put a name to it, and be on the lookout should it ever come back. ❤️
This must have been hard for you to share, my love. I thank you for your candidness and for being vulnerable to the world. But you have shown us how much you persevere! You have the mindset to overcome this and power on. I'm sorry you're going through this but this disease has met its match. Major love to the person who identified this! I love our HS community.💕 💕
Thank you so much ❤️ It was really scary to share it, but also reliving, too. I tend to disappear for days or even weeks at a time, and everyone is always worried about where I am. Isn't the HS community the best?! If not for this community, we'd still be in the dark and I'd never know what was really wrong. The Lord blessed us immensely with this community and has been leading us through this entire ordeal.
A friend sent me this video because my daughter is going through 4 months of hell. She used to have vomitting just like you said before her cycle but they put her on BC to get her cycle under control. Then the paid started and vomitting worsened. Then they put her on depo and it got really really bad. GI has been stumped. She was tiny already and is losing weight at a scary rate. This may be an avenue for us to look into. Wondering if we should ask to go to a neurologist next and what that facebook group is. Any help would be a Godsend, your feelings spoke right to my heart.
I’ve actually heard of this!! You poor thing... thank you for sharing your story! I actually have vestibular migraine... so instead of the pain associated with migraine, I get vertigo... a long with a ton of other fun symptoms. Mine started in my 20s and went away and then resurfaced in my 30’s. Yay me! I actually see a neurologist as well. I’m on two different medications. I wonder if abdominal migraines are treated with the same medication as vestibular migraine. I’m SO blessed that you finally have a diagnosis. Believe me I can definitely relate to getting a ton of tests and doctors not having any clue what is going on. Mine is triggered by my menstrual cycle and definitely stress!!! I will keep you in prayers 💗
Thank you for your courage in sharing your story with this illness! Your optimism is so encouraging to others who my be dealing with similar chronic illnesses! Continued prayers for you in your journey through treatment! 💕
Thank you. I wasn't always optimistic, especially the first year. I was so distraught and I've had to fight depression over it. The Lord has really seen me through this mess ❤️
Thank you for sharing your story!! I now have something to look into if my chronic migraines paired with throwing up should ever come back. I have had minimal migraines compared to what I was going through at 16-18 years old, but now I have a lead. My doctors could never figure out exactly why I had the migraines, I always just assumed it had something to do with my eyes because I would get the aura signs before one would hit. Theses days, now that I'm in my 30's, when I feel the onset of a migraine, if I take Excedrin Migraine in enough time, I can stop it. Anyway. I am praying for you and am thankful that you're able to continue and function for your family, being debilitated while operating a family can be so so hard. Stay strong!!!
I've had them since I was very young, and my mother, grandmother, and great grandmother all had them. I, by far, had them the worst. They knew early on that something wasn't right. My migraines changed in my 30's, and they became much stronger and longer, and that's when all the experimental medications came into play through my neurologist. It's been a LONG road.
I'm so sorry for what you are going through. Our son gets abdominal migraines and it's awful! He mostly gets them when he is very tired or stressed. His doctor actually put him on an antihistamine that helps calm things down and stops the nausea. I will pray that you figure out what works best for you. I can also relate to needing help because I have Crohn's disease and Rheumatoid arthritis. My husband has to drive me around because my RA is bad.
Benedryl helps mine, too! So far, the strong medicine I've started is actually working. When I'm not on it, though, the back ache slowly starts and it comes back. It's so odd. They are really awful, and stress is the number one thing that triggers it. I'm so sorry you have to deal with those, it can be so hard ❤️
My son was diagnosed with CVS and battled this for 7 years. He was in the top 5% of severity for all cases. His symptoms were much like yours including the severe abdominal pain right at his belly button- so painful that even morphine couldn’t relieve it. He also had SATO syndrome which includes a high blood pressure component to each CVS episode. He was in and out of the hospital often. We saw Dr. Li in Wisconsin and it changed our lives! He is a CVS specialist who has dedicated his life to this illness. Our son has been episode free for 4 years now! Dr. Li helped us understand and manage this chronic illness for years now.
My daughter has CVS. She was diagnosed as a toddler and is now 16. She has very few vomiting cycles at this point but does still have the abdominal migraines, especially during times of stress. As a younger child, she missed a lot of school because of CVS. It was really difficult. The trigger for her most difficult times was any kind of change that caused stress (even good stress, like a vacation where she was away from home). Praying that things will start to improve for you. 💕
Thank you for sharing. I actually found your channel when I was searching for homeschooling mums with chronic illnesses. A diagnosis is such a relief. I pray for you and your family as you continue the journey.
Thank you for this video! I have had chronic illnesses ( mainly dysautonomia and gastroparesis) since I was 16. I didn’t think I could homeschool because of these conditions. They can be so unpredictable. One day (or minute even) I’m fine, the next I’m in the hospital. I have been having intense migraines with crazy GI symptoms for the past two years and everything your describing is exactly what I’ve been dealing with. I assumed it was just a new symptom of my preexisting conditions, but this might be abdominal migraines and cvs. I hope you continues to improve and that your recovery goes smoothly. Prayers to you and your family. God bless!
I'm so sorry, friend. I wouldn't with this on anyone. It's a really hard disease to shoulder. There is hope, though. God put the right doctor in my life, and although it can't be cured, he's got an action plan that has given me most of my life back. I pray you're able to find solutions. There are CVS support groups on facebook, although they are far from Christian. They do offer helpful tips.
So sorry that you have been having such a difficult time. I will remember you in prayers!💜🙏💜🙏
Hugs Mandy! I just recently found your yt channel and love watching all videos. Thank you for sharing your story and so sorry about your grandma passing. I will keep you in my prayers 💖
Thank you Kasia!
Wow just wow! I have had fibromyalgia and chronic fatigue since before kids( it was a mystery then) and I struggle with it. You are a inspiration to me! This illness has so many components physical and emotional and it's beyond brave of you to share your story. Im greatly inspired by your poise and obvious joy for life although all has drastically changed and not as imagined. Its not easy-I know. I've had to adjust, reimagine things differently and give myself Grace daily but it took a while. Its a process. I remind myself that His mercies are new every morning and they never come to a end-His love is Steadfast and Faithful. Much Mama to Mama love.
I can so relate to that! God has given me so much grace in this. I don't know why He's taking me down this road, but I do know that it's for my good and His glory, ultimately. I keep reminding myself that almost daily. Thank you, friend ❤️
I will continue to pray for you Mandy!!!
Psalm 46:1-3
"God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging."
Just wanted to reach out to God right now, lifting you up in prayer, declaring in His Holy Name that you will be healed and healing will soon come for you. Always remember you are never alone. You are surrounded by angels as well as your sweet grandmother's spirit. Rest in peace knowing that God has specifically chosen you to be a light to others and He will continually bless you. You, bravely sharing your health story, will help others suffering similar symptoms figure out they too have this condition. Thank you for all you do despite the suffering you've been going through. Blessings to you and your family!❤
Sorry to hear this! My daughter has CVS and abdominal migraines and it’s a big reason we started homeschooling. Amitriptyline has helped control the frequency and severity of her episodes although she still has them sometimes. It feels like our lives revolve around trying to avoid her triggers. Hopefully you figure out something that will work for you!! It must be hard being a mom with this illness, it can be sooo severe and unpredictable!
Im so sorry and I can relate. I have a seizure disorder and cannot drive. I have three young children and its very hard for me to have to depend on others specific my husband for everything. I hope you can overcome all of it.
My daughter has vomiting spells often. We thought it was a milk allergy but has issues with blood pressure. After reading about this I’m wondering if she has CVS. I am a migraine sufferer and all I’ve read CVS patients have a family history of migraine. Thanks for sharing. Now I’m definitely speaking to my child’s doctor. Prayer for your health.
It's definitely related to migraines. I see a neurologist to get treatment for CVS. My neurologist is the one who diagnosed me. I'd recommend finding a neurologist in your area and seeing if they can help ❤️ Praying you find answers!
Praying for you Mandy. You are such a lovely girl and I hope that God will heal you as quickly as possible. I’m glad you finally found out what is going on with you health wise. Prayers and hugs!🙏🏻❤️
Thank you for sharing your story. I have severe migraines. I have had them since I was born. I’m praying for you.
Wow that sounds very hard to live with. It’s awesome how positive you are about it. I’ll add you to my prayers. ❤️
Thank you sooo much for sharing your story ❤
Keep your faith girl 🤗
So very sorry you have endured soooo much
Up from here!!!
Praise God that you were able to find out what was going on. I will be praying that you are able to get total relief from this ❤️
Praying for you and family!🙏
Thank you for sharing your story. I have severe migraines. I have had them since I was born. I had the severe vomiting with my migraines when I was little. It stopped when turned 20. I still have migraines but they are not nearly as bad. I think I had CVS when I was younger. You finally gave me a name for how I felt. Thank you! God bless you!! I’m praying for you!!
Most CVS patients are children, so it's quite possible! It just never reemerges, and the person is usually fine the rest of their lives. I was one of the "lucky" rare ones who had it reemerge when I was 34. Now you can put a name to it, and be on the lookout should it ever come back. ❤️
This must have been hard for you to share, my love. I thank you for your candidness and for being vulnerable to the world. But you have shown us how much you persevere! You have the mindset to overcome this and power on. I'm sorry you're going through this but this disease has met its match. Major love to the person who identified this! I love our HS community.💕 💕
Thank you so much ❤️ It was really scary to share it, but also reliving, too. I tend to disappear for days or even weeks at a time, and everyone is always worried about where I am. Isn't the HS community the best?! If not for this community, we'd still be in the dark and I'd never know what was really wrong. The Lord blessed us immensely with this community and has been leading us through this entire ordeal.
Congrats on finally finding some answers and treatment! I hope all the best for your treatment journey!♥️
Definitely keep you all in my prayers!
A friend sent me this video because my daughter is going through 4 months of hell. She used to have vomitting just like you said before her cycle but they put her on BC to get her cycle under control. Then the paid started and vomitting worsened. Then they put her on depo and it got really really bad. GI has been stumped. She was tiny already and is losing weight at a scary rate. This may be an avenue for us to look into. Wondering if we should ask to go to a neurologist next and what that facebook group is. Any help would be a Godsend, your feelings spoke right to my heart.
I’ve actually heard of this!! You poor thing... thank you for sharing your story! I actually have vestibular migraine... so instead of the pain associated with migraine, I get vertigo... a long with a ton of other fun symptoms. Mine started in my 20s and went away and then resurfaced in my 30’s. Yay me! I actually see a neurologist as well. I’m on two different medications. I wonder if abdominal migraines are treated with the same medication as vestibular migraine. I’m SO blessed that you finally have a diagnosis. Believe me I can definitely relate to getting a ton of tests and doctors not having any clue what is going on. Mine is triggered by my menstrual cycle and definitely stress!!! I will keep you in prayers 💗
Thank you for sharing your story. I’m praying for you.
Thank you for your courage in sharing your story with this illness! Your optimism is so encouraging to others who my be dealing with similar chronic illnesses! Continued prayers for you in your journey through treatment! 💕
Thank you. I wasn't always optimistic, especially the first year. I was so distraught and I've had to fight depression over it. The Lord has really seen me through this mess ❤️
I have never heard of CVS. Thanks for sharing your story.
Thank you, sweet friend ❤️
Thank you for sharing your story!! I now have something to look into if my chronic migraines paired with throwing up should ever come back. I have had minimal migraines compared to what I was going through at 16-18 years old, but now I have a lead. My doctors could never figure out exactly why I had the migraines, I always just assumed it had something to do with my eyes because I would get the aura signs before one would hit. Theses days, now that I'm in my 30's, when I feel the onset of a migraine, if I take Excedrin Migraine in enough time, I can stop it. Anyway. I am praying for you and am thankful that you're able to continue and function for your family, being debilitated while operating a family can be so so hard. Stay strong!!!
I've had them since I was very young, and my mother, grandmother, and great grandmother all had them. I, by far, had them the worst. They knew early on that something wasn't right. My migraines changed in my 30's, and they became much stronger and longer, and that's when all the experimental medications came into play through my neurologist. It's been a LONG road.
@@mandy-maltz Oh my goodness, I will be praying for a break in that generational condition. 🙏🙏🙏🙏
I'm so sorry for what you are going through. Our son gets abdominal migraines and it's awful! He mostly gets them when he is very tired or stressed. His doctor actually put him on an antihistamine that helps calm things down and stops the nausea. I will pray that you figure out what works best for you. I can also relate to needing help because I have Crohn's disease and Rheumatoid arthritis. My husband has to drive me around because my RA is bad.
Benedryl helps mine, too! So far, the strong medicine I've started is actually working. When I'm not on it, though, the back ache slowly starts and it comes back. It's so odd. They are really awful, and stress is the number one thing that triggers it. I'm so sorry you have to deal with those, it can be so hard ❤️
🙏
Any treatment yet?
Yes! I just finished my first treatment and I’ll be going for a second one (most likely) this fall.
Thank you for sharing your story. I’m praying for you.