Most docs these days offer zoom or some other type of video-type visits given COVID. Most of the time, they email you a link to click on to access it around the appt time. It works well if you don’t need an exam.
EDS can be a pain at times but I guess I have learned to live with it…most of the time. My specialist referred me to another one to get evaluated for esophagus evaluation as there was higher incidence of throat cancer with people who have EDS. I had an endoscopy (look down throat to stomach) and I had a small hiatal hernia an the junction that opens and closes is stuck wide open allowing acid to come up. Sometimes the acid coming up can cause tissue changes. ie: stomach cells start to grow up the throat. They can turn cancerous.There is a procedure called TIF that is non-invasive to fix it (close junction and hiatal hernia to stop acid reflux) by endoscopy instead of incisions. Ive been trying to get it but my insurance considers it “investigational”. Ive been fighting thru all the appeals process but with no luck. If I want it fixed, I need to have laproscopic thru stomach. Im dealing with the ES first as that causes me the most pain. One im on medicare it will be covered so sometime in the future Ill get that fixed.
I generally dont take any pain meds unless I am in serious pain as they upset my stomach so much. Cant take NSAIDS, aspirin or tylonal. Usually my drug of choice is oxy when I need anything. After a couple days of it though, it rips up my stomach. Unless Im in extreme pain, I dont take anything. I try massage, pt, whatever else might give me some relief.
It seems the older we get, the less tolerant we become to certain foods and drink. I can hardly drink alcohol anymore. More than a glass of wine can cause problems too. The vagus nerve can cause major IBS, nausea and vomiting but not so sure acid reflux fits in there. Vomiting acid that much isn’t good. Have you ever had an endoscopy ie: scope down the throat to stomach? There may be other reasons you are vomiting acid. Do you sleep on a wedge pillow? You need one for ES surgery anyways. I got one that is also good for GERD (acid reflux) and it did double duty. It does help. Also helps not to eat or drink too close to bedtime. May want to seek a consult also with a gastroenterologist (GI) to check out that acid vomiting. You could have an ulcer brewing down there. Bland diet is a good suggestion.
It is true , women are more robust then men, a hell of a lot tougher!
Snapple you are really
I was beaten up at the age of 13 buy a bunch of bullies ,and whilst laying down having been almost knocked out ,one of the boys used my stomach as a football, causing a hernia.
As time went on I had reflux issues and 15 years ago diagnosed with Barrett’s.
I take regular ppi’s
I have been under a stomach surgeon since. Every two years I have a camera down and biopsy ,and all is fine, he and his team can’t understand why my stomach goes to sleep ,it goes on a vacation for a few days.
This causes big problems.
Also the ppi’s fail and I make enough acid to fill a truck battery.
But when it all does work it’s heavenly.
They can’t explain this either, so I mentioned nerve problems, was it a possibility one of my motorcycle crashes caused a nerve become trapped??
No, he said
So I manage the diet best I can , but weakness is cheese, chocolate and Belgium beer
So I think the tusks are hitting off the vagus nerve, that’s my take on it having listened to and read advice within this group- ( by the way, I am vey grateful for it all so here are some flowers for you everyone to brighten up their kitchens, and I will treat myself to some .
And a
I had burning before endoscopy and every was perfect, so is like a fake pain
Don’t know when I’m full
Don’t know when I’m hungry
Stomach feels stressed
IBS they said but I think it’s a label they give you .
I think when the tusks are cut back I won’t know myself
I don’t want to invest too much hope in it either.
I think you have the balance right , not to expect too much, take it as it comes
Take as little medication as possible and have a balanced diet .
I will have to google Oxy and see what it is and if it could work for me
You have been through the mill- I think I’ll award you 1st prize in the ‘Most Trauma Suffered By One Person’ category Your prize is for when your stomach is okay…ever tried Snowdonia Black Bomber? Definitely recommend it if you’ve not had it!
Lol I can’t take this award as I think ‘ I’m not worthy’
Jim Morrison can have it😂
There are others who have had it tougher for sure, we all deserve a
I’m tempted to buy some though it sounds delicious
The stronger the better
Oxy is short for Oxycodon. Here’s Google’s definition - Oxycodone is an opiate agonist that is the active ingredient in a number of narcotic pain medications, including Percocet, Percodan, and OxyContin . OxyContin is a specific brand name for a pain medication in the opioid class (narcotic drugs) that contains the extended-release version of oxycodone .
well Op, Barretts is not a good sign. I am considered pre-Barretts although my surgeon thought the pathologist was a little overzealous in his interpretation. when I had my last scope, they did a Ph test. You swallow or insert a small capsule that has a way to mearsures your Ph for 24 hours. You wear an electronic device that takes the readings and records it.
My daughter that has dysautonomia which has symptoms the same as Vagus nerve issues. Her sympathetic nervous system does not send or receive signals right like control of temperature, blood pressure, etc. Her stomach doesnt tell her it is hungry and often I have to remind her to eat. She cant tell when too full either but if she has a large meal, she goes into pain as digestive system cannot handle it. Cheese pizza caused an emergency room visit…they think gall bladder attack? She cannot eat greasy foods without getting stomach aches. I agree IBS is just something to call it.
Did you get your hernia repaired? I want to get mine repaired even though it is small and fix the junction that is wide open that allows for that acid to come up all the time. They are finding that long term use of antacids are not good for your body and now causing people more problems.
Well snapple
No they won’t operate, they said ppi’s are working and there would not be benefits which is bs.
I massage hernia and try to manage diet , I’m athletic and slim but have an appetite of a giant
The operation before ppi invention was to find the nerve responsible for acid production and cut it.
Last biopsy was fine , and cancer is always at the back of the mind when I drink a beer or two, living for today as tomorrow may not come is how I’m trying to deal with it all
One of the hardest things for me is a strict diet.
That and keeping to speed limits.
I convinced the vagus nerve is responsible and it’s too easy to put us all under the IBS umbrella.
I just looked up your daughters condition😔.
But is better to know what condition she has then not to know.
The big question mark we carry above our heads for so long , suffering without a diagnosis is worse than the actual illness sometimes
Some comfort in there knowing what is wrong and how she can manage it.
Can I ask how long before and how she was diagnosed?
She is 26 now. She started passing out at age 7. Her pediatrician blew it off and just said it was normal vasovagal response. This is why I recognize the vagel nerve issues. She developed all kinds of symptoms up to age 13 and a Los Angeles Childrens Hospital pain center labeled it a “nervous system disorder”. They just didn’t know what it was. When she entered high school and we moved to another state, we saw a new pediatrician and when I explained her symptoms, he immediately suspected POTS (Posural Orthostatic Tachycardia Syndrome - a subset of dysautonomia). He had just had a patient diagnosed with it and we just happened to be in the right place at the right time. Much like when I got the ES diagnosis. The diagnosis was then confirmed by a pediatric cardiologist. Unfortunately within about 6mths, the condition disabled her. Can be described as an extreme form of chronic fatigue. No matter what we tried, it didn’t get better. We know what it is but not how to “fix” it. No medication is really helpful and the side effects not worth it anyways. We manage her symptoms with weekly IV saline infusions. She is in bed most of the time. She can get up and move around but has to lie down often to keep symptoms down. It took about 6 years to get the diagnosis. I have tried to mediate the lack of movement and atrophy with water PT. With COVID, all the pools are closed which has not helped. The sad part is that she has had no friends since age 13 as she has been home tutored since then. She is able to take some college classes for a couple hours at a time but gets fatigued and has to sleep after. She has about a 4 hours capacity a day for being upright. As it turns out, about 50% of the POTS kids have Ehlers Danlos which she got from me. Ive flown her all over the country looking for the majic bullet or new treatment. I personally think it will be a genetic fix. I routinely cruise the internet for new papers on this. A recent study in Australia says they have a drug that can turn back on the switch that turns on the nerves that signal the body that control its functions.
That vagus nerve controls alot of bodily functions. If you look up dysautonomia and the sympathetic nervous system, you should find a wealth of info on the vagus nerve.
As for the hernia. I dont know what the size of yours is but mine is considered small (2cm) and I do have the open junction also that allows all the acid reflux. I think its bs not to think a repair would not fix the acid reflux. Taking PPI the rest of your life, doesnt make sense either. New data shows long term use of PPI causing major problems. This new TIF procedure that does endoscopy repair easily, that insurance says is “investigational”. My surgeon thinks insurers denying it because they dont want to pay for a bunch of people with acid reflux or small hernias. Like alot of procedures, docs and insurers wont do anything about them until a conditions moves into the “severe” range. If you think about it, alot of people on PPI’s around this world. I get what you mean about struggling with diet to help with acid reflux. I cant give up my morning coffee. So I take it cutting the nerve that controls acid production didnt work?
Your daughters story is heart breaking.
I’m truly lost for words.
It isn’t fair , puts my own condition into perspective, as bad as I am today I’m able to work at 70% capacity.
I really hope you can find an answer somewhere for her.
The stomach has been asleep for 3 days now.
So what I eat I vomit
So reduced to drinking soups as the body is crying out for nutrition
I never had the nerve cut, it’s a difficult procedure, the ppi’s saved me so far from cancer and I’d love to quit them but can’t yet.
I have pressure imbalance between head and body today with headache and other shite going on but having read your daughters story I haven’t reason to complain at all
I’m too optimistic that surgery will eliminate all my issues.
Trying like you not to get my hopes up to high.
I repair and maintain trucks for a living and motorcycles as a hobby
I wish I could fix my body.
There must be someone out there who can fix your daughters problems.
I’m sorry for your hard days, optimistic. Your struggles are as challenging as Snapple’s daughter’s are but in a different way. I hope your stomach revs its engine & starts puttering along again soon. I can’t imagine how miserable it is not to be able to keep food down. You might try adding some protein powder to your soup to give it some extra calories & nutrition. Hemp seed protein, whey protein (if you can tolerate dairy), egg white protein (if eggs work), pea protein are available in unsweetened powdered form & might be tolerable in small doses. Carbs are more digestible than proteins when the tummy is unhappy so rice & other grains might serve you well, a little bit at a time.
Thank you
The right styloid process has moved to the jaw line, just behind the styloid muscle causing it to tighten, it is pushing through the floor of the mouth, I can press it and here the creaking sound under the ear.
I had to stop the van on the way home and vomit clear liquid, enough to fill a cup.
Now it’s gone I can breathe better.
One reason they declined to operate was that for some unknown reason it seemed I had to vomit to ease the stomach pressure , if they operated it may cause me more problems
Peristalsis has staled again for a reason they don’t know.
I can’t figure out food triggers or allergies,
Surgeon said learn to relax, as stomach feels stressed
I reckon another 3mm and it will poke through the skin and like before out of anger and frustration will snap it when it does
If it pokes through and snaps I’m pulling it out with a pair of pliers and that isn’t a joke
The left one is hiding, I’m not sure what it is that is wrapped around it, artery or nerve or a break
Professor didn’t know either
Most counties on level 4 lock down and we are heading for 4 also so it’s going to get worse before I see the MDT in Cork
May be January or February they were saying today
Really fed up to be honest
I think of Snapples daughter and I know it could be worse
And it makes me feel weak
Having a faulty body is getting to me
I look at snapples daughter and feel guilty for complaining, I look at snapples daughter to give me strength and I can’t find it.
I’m ashamed to feel like this.
I’m ashamed to think that I will seek out some illegal substance to escape this failing body for a few hours
I can’t find any relief.
Feels like a pencil is being pushed through the floor of the mouth.
Can anyone post me a few grams of ketamine, our vet wasn’t impressed when I asked him for some.
A&E said it isn’t possible they can help.
I don’t know what to do, don’t know what drug to seek when the only option is to wait for several months as the only option is surgery .
That’s my little rant over
Suck it up and keep going I guess like everyone else
I would also add that my sports physiotherapist who deals with rugby players who have injuries, and skinny motorcycles like myself- says she can’t help with neck manipulation.
So I rang the physiotherapist who helped with rehab and helping me walk again can’t help
A fibromyalgia physiotherapist also declined.
I work the massage balls, the bed end, I try neck exercises, I’m trying to manipulate the bone away from it’s current location, to see if it buys me time and take pressure off the vagus and caratid? artery to no avail
Is there anyway else physically I can do to ease what problems I’m having at the moment?
I have to try a specialist Tai massage therapist who apparently walks across your back
Another is a Turkish bath/ massage if I can locate one, they screw you up into a ball for 30 mins and release you only when you‘be learnt the Turkish alphabet backwards
Is difficult to rotate my head , walk straight and hold my head up
I must look like a cross between the hunch back of County cork and wet miserable day which is everyday when you live in this poxy climate
There is a train coming into the station so I’d better catch it.
optimistic ~
I’m sorry I can’t expedite the process for you. I hurt all over just reading the description of your pain . If you can’t keep food & fluids down, you may end up in the hospital getting rehydrated & fed through an IV. I hope it doesn’t come to that. Just can’t believe your situation isn’t being taken more seriously. Oh that a doctor in your medical system would end up with ES so the symptoms could be experienced & more hurry would be included in getting ES patients in for treatment.
I love your comments about students. Made me laugh praying you’re appt is not cancelled and you get the care you need as quickly as possible. Thinking of you
Gather around kids we have a living specimen for you to work on !
Being horizontal helps, gravity when standing up and things hang makes it worse
The right bone is definitely getting longer and has grown in length, needing less pressure to find it.
I have hydration tablets , chicken soup and and a box of sticky plasters.
So sorry that things are getting so bad, & now more lockdowns delaying things…wish I could say something to help, but there’s nothing, just that we’re thinking of you
.
Your prize is 
. If you can’t keep food & fluids down, you may end up in the hospital getting rehydrated & fed through an IV. I hope it doesn’t come to that. Just can’t believe your situation isn’t being taken more seriously. Oh that a doctor in your medical system would end up with ES so the symptoms could be experienced & more hurry 
would be included in getting ES patients in for treatment.