Reflux or something else?

Who Me?

Well-Known Member
First, I am laying down all the time (that's a discussion for another day).

Tuesday, out of the blue I started having this bizarre symptom. Right in the center of my chest, close to the surface, I would get this wave of sensation. Not pain, but pain, not burning but sort of burning? Like an alien is moving in there. Sometimes the wave will radiate out to my breasteses and I get a sharp pain in my left shoulder blade. It sometimes goes up but only mid chest at most. I was in serious PEM so everything just seemed even "more".

Later in the afternoon it dawned on me that it might be reflux since it seemed better when I was upright, so I started approaching it that way. I drank apple cider vinegar and that seemed to help temporarily. Later i tried baking soda. But by this time I had horrible, painful bloat, which I'm thinking is from the ACV or baking soda. By 9 pm I had all sorts of weird pains, my gut, my knee, I mean WTH?

I slept great, woke at 4 (don't ask me why) and laid on my stomach for about 2 hours when the first wave started. Mild at first. I got up to do a few things and noticed it was gone and when I got back into bed it went away for quite awhile.

I had a very bland breakfast and i did have some sensation right after eating. Again not burning like acid going up into my esophagus. No coughing, no weird taste. That went away shortly. I've been laying on my left side, sort of propped up for about an hour and it just now started happening again.

I'm trying to 1. figure out what this is 2. who would I see 3. would my pcp even have a clue 4. is this some weird ME thing. It IS NOT cardiac. I just had an ECG and labs. Maybe some weird valve thing?

Let me know if you need more info. I may have left something out.

Please don't give me links to a bunch of studies, it's beyond me. I'd just like other's thoughts so I can figure this out.

I am an adult with connected brain cells. I know you are not doctors or diagnosing me.
 

Seanko

Well-Known Member
I have occasional reflux, the reasons are not always clear. Some thoughts below

  • Stress can pay play a part. There is a story from a doctor below
    Stress & Reflux: A doctor's story
  • Overeating does not help
  • Eat more slowly & chew food more
  • Taking aspirin or paracetamol can irritate the stomach lining (Also check other medication)
Some things to try which may help

  • Probiotic youghuts, my father had acid reflux for years. The yoghuts seem to have helped. I have no complex gut biome article to offer :)
  • Chamomile or peppermint tea. Caffeine can irritate the stomach
  • Rantidine is very cheap & does a good job of dealing with stomach acid
  • Drink more water. Sometimes food or tablets can get trapped or dissolve in the oesophagus.
If you are having reflux & excessive stomach acid then every other ache and pain can seem magnified.

Hope these ideas hope & the problem is resolved soon.
 
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Merida

Well-Known Member
Who Me, Are you sure your heart is okay? Sometimes weird symptoms like this can be heart related. And dysautonomia can cause heart issues. Yes, we are confronted with so many strange symptoms that is hard to know what to do, or what symptoms are important to get checked out immediately.

As far as reflux, mine developed right after my neck injury - could feel food coming all the way back up. Was bed-ridden then too. So I learned that a lot of weird symptoms must be neurological - coming from the brainstem or somewhere in there. So, I hope you have a good doc to check this out. Hugs.
 

Who Me?

Well-Known Member
@Merida I can tell you this. My ekg was fine and cardiac enzymes are fine. My BP is fine. Could it be a valve or something else? Sure.

I have an appointment with a clinical immunologist in April who is ME friendly. I was planning on asking him for a referral to a cardiologist who gets dysautonomia since that is something on my list to explore. I haven't had the energy to do the poor man's POTS test. I would prefer to avoid someone who has no clue about ME if at all possible. "hey, you need a psych eval before I treat your disorder". No thanks.

I have a had 2 stressful weeks dealing with crap and this came out of the blue after the culminating event Sunday, so stress/anxiety very real possibilities. I do not feel any food coming up and no real burning. It never goes much farther than maybe an inch above my boobs.

I totally agree about the neuro stuff. I have some really crazy crap going on. But how do you explain some of this to a PCP who gets you are sick but really is clueless?
 

Merida

Well-Known Member
Sorry, I read the last part more carefully - more awake now. No heart issues for you. Okay. More on neurological mayhem: also, after my neuro injury I had severe abdominal pains, all kinds of weird stuff. I could lie on my back and my saliva would totally stop. Roll my head to the right, and the saliva would flow again. Had outer ear pain so bad that I was screaming. Had terrible tooth pain, but eventually got to the dentist - no problem with teeth. Could not swallow - on Ensure only for 4 months. Completely lost my bladder/ bowel sensations for a while. And more. Point: all neurological - from the upper neck.

I began to observe that my body position affected my symptoms. Like 3 years later learned about how important the atlas / axis relationship is.
 

Who Me?

Well-Known Member
@Merida yeah, i have some really crazy neuro pain. It's nuts and like I said, how do you explain this to a doctor? One thing I have, it's more a process of elimination of what it's not. Muscle relaxants don't work, pain meds don't work, baclofen doesn't work but phenibut does? or LDN?

I do know to lay on the left side. Or is it the right?

Can you dumb down tell me what atlas/axis is?
 

Merida

Well-Known Member
@Merida I can tell you this. My ekg was fine and cardiac enzymes are fine. My BP is fine. Could it be a valve or something else? Sure.

I have an appointment with a clinical immunologist in April who is ME friendly. I was planning on asking him for a referral to a cardiologist who gets dysautonomia since that is something on my list to explore. I haven't had the energy to do the poor man's POTS test. I would prefer to avoid someone who has no clue about ME if at all possible. "hey, you need a psych eval before I treat your disorder". No thanks.

I have a had 2 stressful weeks dealing with crap and this came out of the blue after the culminating event Sunday, so stress/anxiety very real possibilities. I do not feel any food coming up and no real burning. It never goes much farther than maybe an inch above my boobs.

I totally agree about the neuro stuff. I have some really crazy crap going on. But how do you explain some of this to a PCP who gets you are sick but really is clueless?
Exactly. Exactly. Exactly. It took me 15 years to get a dx of dysautonomia - from a neurosurgeon. I have seen probably a 100 different doctors - multiple specialists. So now, I have an immunologist ( yes! ) who does blood work to make sure I don't develop a full blown autoimmune thing ( he thinks I do have an " unspecified connective tissue disorder) or cancer. Plus, a traditional osteopath and acupuncturist.

The people who really understand these profound neurological crazy things are the traditional osteopaths who are trained in craniosacral. Also good : SacroOccipital chiropractors. But I am very careful with all chiropractors - no twisting and cracking of the neck - ever! That was my original injury - went in ( first time ever) for a sore right hip from yoga - traditional chiro. Bed ridden one year after his neck/pelvis adjustment. Never recovered.
 

Who Me?

Well-Known Member
One allergist I saw (immunologist) diagnosed me with Hypogammaglobulinemia but would not give me IVIG until I had a psych eval to make sure my symptoms were not psychological. I told my PCP that I could be bat shit crazy, but couldn't crazy my immune system to be off.

The clinical immunologist I'm going to see was treating CFS 20 years ago with interferon. He's known as being radical because he uses IVIG.

I'm pretty sure I have some kind of disautonomia but with an atypical presentation. I don't get lightheaded when i stand, my BP doesn't go up but I'm very uncomfortable sitting up so I'm always horizontal.

There is a lot I would like to do, but just can't because at this point I never go out except to go to the doctor. Maybe if I can gain a little ground I can look into other things, but for now I'm limited with what I can do.

I sued a chiropractor for rupturing a disc so I won't be doing that any time soon.
 

Merida

Well-Known Member
@Who Me
More: so sorry. When I was first injured (1998) I didn't know anything about structure and function. Didn't know what a sacrum, atlas, axis, occiput, - and I didn't care. It took me years of reading, treating with this SacroOccipital chiro, to begin to understand this, and for many symptoms to make sense.

We produce about 1 1/2 liters of spinal fluid each day in the brain. It must flow all the way to the pelvis ( middle bone is the sacrum) and back to the brain. How ? There is a sophisticated pump. the bones in the skull have a very slight movement. The occiput ( lower bone in skull just above back of neck) and the sacrum in the pelvis have a reciprocal motion to help circulate Spinal fluid up and down. This pump is called the Cranial Rhythmic Impulse - 12-14 pulses per minute. ( more complex than just this )

There is a hole in the base of the occiput that should 'line up' with the hole in the very top vertebra in the neck - the Atlas, or C-1. The next vertebra is C-2 or the Axis. These are 'designed' to hold the head in stable positions. The holes must also line up to allow proper spinal fluid flow going down the neural tube to the pelvis.

Thus, if for any reason the upper neck bones or sacrum/ pelvis complex gets knocked out of position, the flow of spinal fluid is affected. ( also, blood flow , tension on the membranes lining the neural tube) The spinal fluid can back up in the lower brainstem area, and cause pressure on the important cranial nerves ( like the trigeminal nerve Which branches to the teeth) and various brain structures.

There are various things that can set people up for trouble : scoliosis, whiplash, child birth, slip and fall, and more . So the traditional osteopaths and SacroOccipital chiropractors understand this. I will try to find a good site for reading. It is actually pretty boring reading, as such, but opens the door for new understanding of complex neuro symptoms.
 

Who Me?

Well-Known Member
@Merida you've obviously mistaken me for someone with a functioning brain! lol

Way to much for my pea brain. I'll try to pick out a few relevant phrases. And after I read them I will conpletely forget. When I say dumbed down I'm not kidding.

Btw. My name has a ? So your tag didn't work.
 

Merida

Well-Known Member
@Who Me?
Hope that worked. Just learning how to do this. Sorry. I had to look at pictures to get this structure stuff. I wrote an article that was published in Fibromyalgia Frontiers in 2008. I would love to write another article, but I can't. Cognitive collapse, can't sit upright for long most of day. Can't keep a list or sequence in my head. I learned a lot about dysautonomia at Dysautonomia International - very variable symptoms.

The neurosurgeon diagnosed me with dysautonomia and referred me to a neurologist - supposed expert. But she just started throwing drugs at me - amphetamines, etc. I can't take any of that. I asked for a tilt table study or cardiac studies. Nope. She said that they could be negative and I could still have dysautonomia. No studies. Never went back. I think the insurance companies ( and Medicare?) may pressure docs to not order expensive tests.

I found a cardiac study from Newcastle University on CFS/ME patients and heart issues. 2012 ( sorry about the study reference - but this is good - I think) "Impaired cardiac function in chronic fatigue syndrome using magnetic resonance cardiac tagging. They concluded that " Patients with CFS have markedly reduced cardiac mass and blood pool volumes, particularly end- diastolic volume: this results in significant impairments in stroke volume and cardiac output. The CFS group appeared to have a delay in the release of torsion."

Not sure exactly what all this means - except our hearts are not pumping normally - not putting out enough blood and not relaxing between contractions enough? I had cardiac studies too, I bet they didn't evaluate these aspects??? If you find out, please let me know.

What a journey.
 

Seanko

Well-Known Member
I found a cardiac study from Newcastle University on CFS/ME patients and heart issues. 2012 ( sorry about the study reference - but this is good - I think) "Impaired cardiac function in chronic fatigue syndrome using magnetic resonance cardiac tagging. They concluded that " Patients with CFS have markedly reduced cardiac mass and blood pool volumes, particularly end- diastolic volume: this results in significant impairments in stroke volume and cardiac output. The CFS group appeared to have a delay in the release of torsion."
This is Prof Julia Newton's area of study at Newcastle University how blood pressure & volume dysfunction (& heart rate in the case of POTS) cause problems in ME/CFS eg Orthostatic Intolerance.
 

Who Me?

Well-Known Member
So I am now thinking this is some neuro crap vs reflux. This morning I felt the "twinge" in a different spot, lower and it radiated out to the sides.

Sometimes, like now majorly crashed, I'm fine. So I think @Seanko was close when he suggested stress or anxiety since it started 2 weeks after major stresses.

Right now I'm just tolerating it and i'll see how it goes.
 

Merida

Well-Known Member
This is Prof Julia Newton's area of study at Newcastle University how blood pressure & volume dysfunction (& heart rate in the case of POTS) cause problems in ME/CFS eg Orthostatic Intolerance.
One more thing : Helicobacter pylori can cause these symptoms too. And, if dysautonomia alters stomach function, well maybe more likely to have issues with this bug.
 

Who Me?

Well-Known Member
This is interesting. Last night I took Oleamide for sleep (see my post).

This morning (while I was still totally drug hungover) all that crap I had been feeling was 90% gone. As it starts to wear off, some of it is coming back.

Since Oleamide works on gaba A, it does make sense that a lot of this is neuro.
 

Croatoan

Well-Known Member
This is interesting. Last night I took Oleamide for sleep (see my post).

This morning (while I was still totally drug hungover) all that crap I had been feeling was 90% gone. As it starts to wear off, some of it is coming back.

Since Oleamide works on gaba A, it does make sense that a lot of this is neuro.
You sound so much like me, I have had these pains for so long and cannot tell you how many times I thought I was having a heart attack. As I said in another post, I am not saying you have anxiety, but these are symptoms of anxiety. GABA receptor drugs reduce anxiety and pain. Note that the also have an effect on serotoinin http://www.sciencedirect.com/science/article/pii/0006899381901189

I think you might be a good candidate to try FMN (coenzymated B2). It stops my pain immediately.
 

ShyestofFlies

Well-Known Member
@Who Me? if it hasn't been mentioned you should consider hiatal hernia (made worse by laying down immediately after meals) and a duadnal ulcer in your differential diagnosis. I have had both of these and reflux identified via endoscopy or treated over the years, and the only real preventative advice for the hernia is to not lay down after eating (which is hard because eating makes me so sleepy lol)

I should mention you can try an acidic food elimination diet- citrus, tomatoes, etc. and also that my ulcer was caused by nsaid usage so you might eliminate any nsaids (including pepto bismol) if you happen to take any. If it persists definately consult with a good gastro
 

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