I have Dysautonomia and one main GI issue is caused by SIBO in which is common with us pts. It can be reoccurring as I have treated for it 3 times in the past 5 years. A lot of these symptoms are very indicative of SIBO.
Yes, there has been a great deal of research in recent years on this subject. It seems to be fairly common for it to reoccur too. I'm sorry that you are going through that. I hope the last treatment you had is your last. Thank you for sharing that point. It is an important factor.
Thanks for listing these - Unfortunately, I've experienced most of these symptoms - nausea, bloating, abdominal pain, sometimes feeling like my food is moving too slowly through my digestive system, and acid reflux. I've recently tried making my own salt pills using gelatin capsules, but I think they gave me more nausea and stomach pain. So it's back to drinking salted water and heavily salting my food. My doctor have me Nexium for the GERD, which is now a known link to cancer (it was never meant to be used for more than a couple of weeks). I've also tried Paleo, low-carb, Keto and the Carnivore Diets. I've personally found the Carnivore Diet (99% meat & eggs, then some garlic, lemon juice, & lots of salt) the diet that gives me the least GI problems. The other thing that usually reduces my symptoms is doing Wim Hoff Breathing exercises. I've also found recently adding in more strength training has reduced my fatigue in the afternoons :) P.S. I've just watched a video of "Once Bedbound, Now Thriving On Carnivore | Dr. Shawn Baker & Ribeye Rach" who has had significant improvement from her EDS & POTS using a Carnivore Diet, brain retraining/visualisations (both equally effective as ea other), and then Prolotherapy. You can see my notes of the interview including timestamps at www.evernote.com/shard/s198/sh/f918e6c3-d114-4665-b04b-f192496963fb/11a3c6b27394ec11ca5257e0aa8470c1
Thank you for sharing the information. I'm sorry to hear you are going through so many GI issues. Unfortunately it is a common experience for many people living with dysautonomia. You are doing the best for yourself by trying new things because the combination of things that work for each person can be very different and not all solutions work forever. So it is worth trying things more than once over time as well. Best of luck.
I wish there was more info about nOH a very rare form of DYSAUTONOMIA 🥺🥺I have so many other health issues caused by Dysautonomia..ibs for only one of several..I struggle with NO help..don't EVER LEAVE MY HOUSE 😢😢😢 No meds that work..pots is airways all you hear about 😢 neurogenic orthostatic hypotension is devastimg and destroyed and continues to destroy my life
You are right that POTS is the main form of dysautonomia that you hear about and it is the one that has the most research behind it. However, there has been a lot of discussion about the treatment of GI issues regardless of type of autonomic dysfunction present. In other words, it can be more important to diagnose and treat the way the dysfunction is effecting the GI system rather than focus on the disorder's origin. IN other words, if the person's problem is chronic diarrhea, then the treatment is related to that without regard to whether the person has POTS or another form of dysautonomia. If you watch Dr. Raj's video on POTS on our channel, you will hear his explanation and the thinking behind this approach. We are so sorry that you are suffering and we hope you can find some relief soon.
I also have daily migraines along with all of the other symptoms you have mentioned. I’m wondering if others also suffer from migraines as well with this?
Yes, headaches and migraines are symptoms experienced by some people with dysautonomia. It was not discussed here because this video focuses on GI symptoms. I hope you find relief for your migraines. They are a debilitating and painful symptom. Best of luck.
I have migraines asking with MCAS..IBS..neurogenic orthostatic hypotension which is much more rate than pots and never addressed..a symptom of DYSAUTONOMIA is migraines..along with a mile long list of other stuff 🥺
@@janetjones1456 Yes, migraines are a common symptom. A brutal one to live with. I hope you can find the right fit for meds that help. There a number of new meds that are supposed to be helpful. But as I'm sure you know, what works for one of us, doesn't necessarily work for another. So keep trying. Best of luck
I have dysautomia IsT Reynauds Nerve damage from b12 severe absorption issues And blood pressure issues ever since I have dysautomia But I don’t have any nausea I do get bloated and it seems to be like I have gluten issues ever since this too I get stomach issues ( diarrhea or just going to bathroom a lot more than the past) I’ve had loads of tests Some that were procedures like endoscopy and colonoscopy As well as bloodwork to the roof! Also been getting utis so much for a year when never did ever before they said maybe dysautomia but turns out I have a kidney stone :(
So sorry to hear you are struggling. Keep trying to find things that work and avoid the ones that seem to cause more issues. It does get better over time and as you find new ways of managing symptoms.
@@DysautonomiaInformationNetwork I very much hope so it’s been a year and a half of torture. But hopefully soon. I can’t walk more than 10 minutes anymore I’m 25 years old now. I’m thinking of saving for a mobility scooter I hear those help people in certain situations . Thanks so much your videos are helpful to me the last few months since finding your channel
@@tinyty6570 I rented a mobility scooter to go on a family trip. It was a great experience because I could not have gone without it. If you can rent one, try a few models out to see what works best for you. Keep trying you will find things that work for you. It is much worse at the beginning years of an illness because it is so overwhelming and there are so many moving parts to deal with, but it will get better. I can look back at the first few years now and I realize how many things I was doing then that made life so much more difficult. Over time, you learn to manage symptoms, and you find what works and, most of all, you become more adept at change and you appreciate how very resilient you are. Remember we are whole people living with an illness, not just ill people. It sounds really cheesy I know, but I forced myself to make a list, and each day I wrote down something that I could still do. I had to do that to remind myself not to focus on what I couldn't do anymore. As I said, it sounds cheesy but sometimes the smallest things can make a big difference. Try and find what works for you. It really will get better.
@@DysautonomiaInformationNetwork I appreciate the kind words I will keep thinking back on it Just sucks . Even my vision is weird ever since this hard to read books now but apparently my visions fine . Eye tracking issues since all this or something or maybe from the pass out feeling it effects eyes not sure. Or depersonalization I got from this Illness Thanks so much I’ll try to rent to see if I can I’m a small guy so I don’t want a bulky one I saw some nice ones on Amazon that fold right up . Thanks so much :)
Gastroesophageal reflux disease (GERD) is when stomach acid flows back through the esophagus. Here is a link that may be helpful - www.mayoclinic.org/diseases-conditions/gerd/symptoms-causes/syc-20361940
![เปิดบ้าน พี่ตูน Bodyslam หลังใหม่คนแรก ที่ภูเก็ต l [Nickynachat]](http://i.ytimg.com/vi/flFwcmyDQSk/mqdefault.jpg)
I have dysautonomia and for me the gohan (rice) sweet potato advocate are good, I don’t eat sugar neither fast food 🥲🥲
I have Dysautonomia and one main GI issue is caused by SIBO in which is common with us pts. It can be reoccurring as I have treated for it 3 times in the past 5 years. A lot of these symptoms are very indicative of SIBO.
Yes, there has been a great deal of research in recent years on this subject. It seems to be fairly common for it to reoccur too. I'm sorry that you are going through that. I hope the last treatment you had is your last. Thank you for sharing that point. It is an important factor.
Thanks for listing these - Unfortunately, I've experienced most of these symptoms - nausea, bloating, abdominal pain, sometimes feeling like my food is moving too slowly through my digestive system, and acid reflux. I've recently tried making my own salt pills using gelatin capsules, but I think they gave me more nausea and stomach pain. So it's back to drinking salted water and heavily salting my food. My doctor have me Nexium for the GERD, which is now a known link to cancer (it was never meant to be used for more than a couple of weeks).
I've also tried Paleo, low-carb, Keto and the Carnivore Diets. I've personally found the Carnivore Diet (99% meat & eggs, then some garlic, lemon juice, & lots of salt) the diet that gives me the least GI problems.
The other thing that usually reduces my symptoms is doing Wim Hoff Breathing exercises.
I've also found recently adding in more strength training has reduced my fatigue in the afternoons :)
P.S. I've just watched a video of "Once Bedbound, Now Thriving On Carnivore | Dr. Shawn Baker & Ribeye Rach" who has had significant improvement from her EDS & POTS using a Carnivore Diet, brain retraining/visualisations (both equally effective as ea other), and then Prolotherapy. You can see my notes of the interview including timestamps at www.evernote.com/shard/s198/sh/f918e6c3-d114-4665-b04b-f192496963fb/11a3c6b27394ec11ca5257e0aa8470c1
Thank you for sharing the information. I'm sorry to hear you are going through so many GI issues. Unfortunately it is a common experience for many people living with dysautonomia. You are doing the best for yourself by trying new things because the combination of things that work for each person can be very different and not all solutions work forever. So it is worth trying things more than once over time as well. Best of luck.
Hello mam! I have pots and day before I started i ate a lot since then there stomach problems also. So my gi is reason for pots?
I wish there was more info about nOH a very rare form of DYSAUTONOMIA 🥺🥺I have so many other health issues caused by Dysautonomia..ibs for only one of several..I struggle with NO help..don't EVER LEAVE MY HOUSE 😢😢😢 No meds that work..pots is airways all you hear about 😢 neurogenic orthostatic hypotension is devastimg and destroyed and continues to destroy my life
You are right that POTS is the main form of dysautonomia that you hear about and it is the one that has the most research behind it. However, there has been a lot of discussion about the treatment of GI issues regardless of type of autonomic dysfunction present. In other words, it can be more important to diagnose and treat the way the dysfunction is effecting the GI system rather than focus on the disorder's origin. IN other words, if the person's problem is chronic diarrhea, then the treatment is related to that without regard to whether the person has POTS or another form of dysautonomia. If you watch Dr. Raj's video on POTS on our channel, you will hear his explanation and the thinking behind this approach. We are so sorry that you are suffering and we hope you can find some relief soon.
where is your abdominal pain? Upper, lower?
I have all of them varies from day to day. 😢
I also have daily migraines along with all of the other symptoms you have mentioned. I’m wondering if others also suffer from migraines as well with this?
Yes, headaches and migraines are symptoms experienced by some people with dysautonomia. It was not discussed here because this video focuses on GI symptoms. I hope you find relief for your migraines. They are a debilitating and painful symptom. Best of luck.
I have migraines asking with MCAS..IBS..neurogenic orthostatic hypotension which is much more rate than pots and never addressed..a symptom of DYSAUTONOMIA is migraines..along with a mile long list of other stuff 🥺
@@janetjones1456 Yes, migraines are a common symptom. A brutal one to live with. I hope you can find the right fit for meds that help. There a number of new meds that are supposed to be helpful. But as I'm sure you know, what works for one of us, doesn't necessarily work for another. So keep trying. Best of luck
I have dysautomia IsT Reynauds
Nerve damage from b12 severe absorption issues
And blood pressure issues ever since I have dysautomia
But I don’t have any nausea
I do get bloated and it seems to be like I have gluten issues ever since this too
I get stomach issues ( diarrhea or just going to bathroom a lot more than the past)
I’ve had loads of tests
Some that were procedures like endoscopy and colonoscopy
As well as bloodwork to the roof!
Also been getting utis so much for a year when never did ever before they said maybe dysautomia but turns out I have a kidney stone :(
So sorry to hear you are struggling. Keep trying to find things that work and avoid the ones that seem to cause more issues. It does get better over time and as you find new ways of managing symptoms.
@@DysautonomiaInformationNetwork I very much hope so it’s been a year and a half of torture. But hopefully soon. I can’t walk more than 10 minutes anymore I’m 25 years old now. I’m thinking of saving for a mobility scooter I hear those help people in certain situations . Thanks so much your videos are helpful to me the last few months since finding your channel
@@tinyty6570 I rented a mobility scooter to go on a family trip. It was a great experience because I could not have gone without it. If you can rent one, try a few models out to see what works best for you. Keep trying you will find things that work for you. It is much worse at the beginning years of an illness because it is so overwhelming and there are so many moving parts to deal with, but it will get better. I can look back at the first few years now and I realize how many things I was doing then that made life so much more difficult. Over time, you learn to manage symptoms, and you find what works and, most of all, you become more adept at change and you appreciate how very resilient you are. Remember we are whole people living with an illness, not just ill people. It sounds really cheesy I know, but I forced myself to make a list, and each day I wrote down something that I could still do. I had to do that to remind myself not to focus on what I couldn't do anymore. As I said, it sounds cheesy but sometimes the smallest things can make a big difference. Try and find what works for you. It really will get better.
@@DysautonomiaInformationNetwork I appreciate the kind words I will keep thinking back on it
Just sucks . Even my vision is weird ever since this hard to read books now but apparently my visions fine . Eye tracking issues since all this or something or maybe from the pass out feeling it effects eyes not sure. Or depersonalization I got from this Illness
Thanks so much I’ll try to rent to see if I can I’m a small guy so I don’t want a bulky one I saw some nice ones on Amazon that fold right up . Thanks so much :)
😊
What is Gerd? Gurd? Sounds like I may have it 😀
Gastroesophageal reflux disease (GERD) is when stomach acid flows back through the esophagus. Here is a link that may be helpful - www.mayoclinic.org/diseases-conditions/gerd/symptoms-causes/syc-20361940