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Eagle Syndrome - Online Support Group

Stomach issues 2?

Hi everyone. I know i posted before about this. Just reaching out again. See if i can reach anyone whos had stomach issues. I had ZERO stomach issues prior to ES. october 2016 my jaw started clicking-TMJ which began the calcification of eagles. Shortly after ES symptoms began. FEB 2017 when my eagles symptoms started beginning is when my stomach issues started. I have SIBO. had both surgeries. Cant seem to get my stomach better. Drs cant find the SIBO “cause”. Everyone says its hard to believe ES caused this. But i never had stomach issues. Idk whats going on. Anyone else dealing with this? Antibiotics help but then it comes back. :frowning: i thought after surgery my stomach started getting better. But then i got pregnant n its bad again. Im a year post op + a few months. I delivered my baby. Cant seem to shake this SIBO. Im depressed. Trying see if i can find people dealing with this? I havent really found people who have this issue. I read es can cause stomach issues but havent found anyone to talk to thats had as a severe stomach issue as im having. Any advice is appreciated xo

So sorry that you’re having these stomach issues to deal with as well as having your little one to look after, must be very hard.
As far as I’m aware I’ve not heard of anyone with SIBO- ES does seem to cause stomach issues with some members, but this seems related to vagus nerve irritation/ compression. I don’t know if vagus nerve irritation would cause bacterial overgrowth, I’m sorry.

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Hi jules. I read many articles that vagus nerve issues does infact cause sibo because it slows down the gi track and doesnt get rid of waste fast enough so bad bacteria would overgrow causing sibo. But i cant find other es people who have this same issue as severe as me. Im trying to keep my head up but i get depressed somedays. Probiotics help some. But i started a whole vitamin regimine for sibo and its honestly not helping. I remember right after surgery i had 2 months i was sibo issues free. Then pregnancy came n they came bk so i dont get it. Some days r better than others. Thank u for the support xo :two_hearts:

That’s something I’ve learnt then, thanks, will remember that…it’s intetesting that after surgery it did improve, but came back with pregnancy, have you found out if hormones can have any effect on gut bacteria?

Hi jules. I know pregnancy and breastfeeding gives off a hormone prolactine n oxytonin i believe which relaxes the gi track so it slows down. Slow transit=slow waste removal = bacteria can build up. But it should cause constipation not so much sibo. But seems like i already had an existing issue. And i am stopping breastfeeding now and sibos not going away yet. I remember october a month after my 2nd surgery i told my husband how good my stomach felt for once in years i even went to work witg him laying sod (grass). But now every day is pain and slow transit. :frowning: I cant say for sure ES caused this but i think it did. But i dont know why im tge only one with such severe stomach issues. Anyways thx for listening xoxo

Hi Cupcake5

I met a friend for dinner the other night. What we can eat is an issue for both of us so we have lengthy discussions about food. She has SIBO and swears by the FODMAP diet. She was strict with it for 6 weeks and noticed a big difference. She now stays within a group of foods that she knows are ok and goes back on the diet from time when flareups occur.

I have mentioned in the past that I had horrible stomach issues. I worked with a nutritionist and went on a similar diet to the FODMAP. It helped!! I too have flareups - sometimes with “slow waste,” sometimes horrible acid and bubbles, but these symptoms go away when I get strict with my diet.

With all that you’ve been through it could be that your gut is out of whack. Having a baby changes your body and can cause constipation = constipation can cause overgrowth of bacteria which can cause SIBO. Ironically, taking antibiotics can cause gut issues as well. Yes, there may be a different underlying cause but the diet can only help.

I hope you get some relief. Stomach issues are a bear to deal with. Sending hugs.
BG

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will put you back on my prayer list! :hibiscus: :pray:

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Hi Cupcake5 ~

I’m continuing to pray for you!

:heart:

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Hi, I too have slow emptying stomach since ES. I saw a gastroentorologist who put me on the FORMAT diet too, it definitely helps, of I don’t stick to the diet, my symptoms come back. I am having ES surgery 20th Feb, I am hoping though that my stomach issues may improve as my swallowing may be causing it too.

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Meant FODMAP diet

@Cupcake5

Unfortunately within the past week my stomach issues have roared back with vengeance and I do believe that its related to the vagus nerve.

I started back on my very strict diet which I know will help. It also means not eating after 7-8 pm so my stomach doesn’t have to work hard when in bed.

The link below has information on causes and helpful tips for healing vagus nerve issues. It’s all about mind and body and I find the tips to be helpful including the cold therapy. I use my ice pack on the left side of my chest from my neck (following the vagus nerve) on/off for 30 mins or so before I go to bed. I sometimes bring it to bed with me - like a security blanket.

I am taking gabapentin and would have thought, maybe, that it would help. Amitriptyline, mentioned many times on this blog for nerve pain is also used for IBS - interesting that it works on nerves = stomach issues. (Used for IBS but can also cause constipation :astonished: Drugs should be taken with caution)

As I have mentioned before, stomach issues are a bear to deal with and affects coping mechanism, sleeping and basic day to day functions. Having been here before, I am hopeful that I can regain control and heal. It takes a lot of work but it can be done. At least for me, diet is the first step.

https://victoriaalbina.com/vagusnerve/

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I hope you do get it under control soon, feel for you…hugs to you.

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Thank you for the great info & the link, BG! I hope it gives Cupcake5 some other options besides those she’s tried. Glad to hear that the information has helped you. I also have vagus nerve issues (swallowing & some other probs) but not gastrointestinal & am working w/ a Z Health practitioner (but am not doing my homework so progress is non-existent at the moment… :weary:). I will also try some of the recommendations Victoria Albina suggests.

:blush:

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Hi everyone. Thank u so much for all the help n prayers. I am so sorry for those dealing with this to. Eagle syndrome is a very very difficult thing to have. Even after surgery. @BrooklynGirl remind me did u have both surgeries? I tried the fodmap diet before i had mh final Es surgery and it didnt seem to help. Probiotics help me and antibiotics work wonders just for the time i am on them.

As far as ES flare ups go ive felt better- in regards to tingling or pain. Havent had any in a while. Now the last month i have a choking/gagging sensation again. If feels like i am being choked on the right side today pretty badly. I am not sure whats going on. Cognetti said he never had a patients grow back. I dont have any pain or other symptoms that i had on that side. Not sure what is going on. Im very upset. It never seems like ES wants to go away. Its like up n down n up n down. I thought after surgery it would just go away. Cognetti was reluctant to do another scan unless pain came back. Idk im thinking about trying to contact an ENT near me to get another scan before i call cognetti. This gives me so much anxiety. I just want us to be better. I dont know if an ENT near me would run a scan for me. A lot of people hear eagles n shoo me away. Any advice is always appreciated.

Also i stopped breastfeeding and my slow gut seems a lil faster. By all means it is not fixed but just not as slow which is good. Now this choking feeling is concerning. If its not one thing is somethign else :frowning:

P.s my GI dr perscribed antibiotics for SIBO. i havent take. Them yet as i am saving them bc i know they will help me. They said if it keeps coming bk ill have to manage with pro/prebiotics which i am doing. Or keep taking rounds of antibiotics. They are agfraid to admit eagles caused this. Hes familiar with vagus nerve issues but never seen eagles. He wanted me to go for millions more tests looking for chrons. I alreadh had 2 colonocopys and tons of stool n blood tests n was told i dont have chrons. And this started when eagles started so i dont doubt its related. Now especially since others have had this issue.

The choking sensation you’re now getting, it could maybe be scar tissue? Massaging the area can help, there have been some discussions about massage, & also cold laser therapy, you could have a look at those, it might help? The styloids can grow back, but it’s quite soon after your surgery, some of the members who have come back with regrowth have been several years later (Except for a child that we know of), so I hope that reassures you.

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Hi Cupcake.

Yes, I had both surgeries done now.

Have you tried the elimination/cleanse diet? (also know as a “bowel reset diet.”) Just recently my stomach issues came roaring back and now back on the diet. I have some serious food sensitivities that I think can be attributed to vagus nerve issues. My stomach flared up after my first surgery and now after the second.

I worked with a nutritionist to helped me get back on track and she set me up on the elimination/cleanse diet. Not only did it help with my stomach acid and food sensitivities, but worked on my chronic constipation and I lost weight - a bonus. The first week was brutal as it seemed my body was ridding itself of the toxins and was exhausted all of the time.

I have attached the pdf of the diet. The diet is to eat only foods on the left column for two weeks then add one food on the right column per week to see if there are any reactions.

Be Well Cleanse Diet.pdf (71.9 KB)

The nutritionist I worked with is in NY but my interaction with here was by face time - makes it very easy in a busy schedule. She steered me toward the correct herbs and supplements as well. If you’re interested here is here website:

You have my complete sympathy on what you are going through. I hope you get relief.
BG

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I will message you

Hi everyone thanks all for the responses, info, diets and all of your help. @BrooklynGirl thank u for that diet info im going to look into that! Im sorry ur going thro some ups n downs of issues too. How r u feeling now?

I have the antibioticics from the stomach dr for sibo but i didnt start them yet. I was weening off breastfeeding for the past month n then i kept getting sick. Since my daughter has been born ive gotten maybe 4 hours of sleep a night not consecuotve and on a rare good night ill get 6 hours. In december i went back to work full time so i cant nap during the day. End of dec me n the baby both had rsv virus. Then her dad brought home a nasty cold/virus him n his coworker had which we got. Then we were sick again with runny noses n coughs. Shes in daycare full time n weve been sick. So then just as we were getting better the runny noses n cough congestion started like monday tuesday in me and baby. N i had a runny nose sore throat. Then friday it started getting worse headache fever chills. The baby got a runny nose ear infection and cough no fever. I had a fever of 102 since friday. Then sun morning it went down to 96 (low). Then by afternoon it was back up to 102. N my throat was killing me. I look in n theres white spots/streaks on where my tonsils were and behind the hanging thing. So i went to walk in. Strep is negative they daid it was wierd looking n concerning n go to another dr. So i went to hospital n hospital still doesnt know. She said it wasnt ulcers but looked similar to strep but strep is negative. She gave me strep antibiotics and told me to go to my primary or ent. Who i will call today. Online says white spots can be:
-strep
-tonsilitous
-mono
-std

But my
-strep is negative
-i had my tonsils out in highschool
-i already had mono in high school

  • how can it be an std. ive only slept with my husband 1x since post partum n that was 2 months ago n he said he didnt cheat on me

I am so upset. I need a break. I thought eagle syndrome was the end of mystery illnesses for a while. Why do i have such mystery illnesses all the time or “rare” things. I just want to get better for my baby.

And the choking gagging feeling has been since this past month. Ive also had constant post nasal drip with all the sickness idk whats going on

Thanks for listening xo :two_hearts:

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It’s probably a combination of things- being tired & run down means you’re likely to pick up any bugs going, plus with your baby just starting day care she’ll be exposed to lots of new bugs so not surprising she’s getting lots & bringing them home to share with you! A rotten time, but it will pass…As you’re whole system is obviously inflamed it makes sense that the nerves around where you had the surgery will flare up too & cause ES symptoms again. I’ve had quite a few bouts where I’ve had symptoms come back & got worried about regrowth or scar tissue, then I’ve come out with a cold or bad throat etc., it’s just the bug flaring things up.
The postnasal drip could be down to the runny nose you’ve had & maybe stuffed up sinuses- years ago people called it catarrh & it was quite accepted you had it after a cold, nothing unusual about that, nothing to worry about, just annoying but it will pass.
Not sure about what’s causing the white spots on your throat, but the easiest thing is to ask to have a swab taken again to test for anything other than strep.
Hope you soon feel better, I remember those first couple of years with my boys, very tough, thinking of you & sending you a hug :hugs:

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