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Avatar universal


For the last 5 years I have had a condition happen where a varying spot on my body will feel sore.  I will touch it and then start to burp/belch.  I usually use a tennis ball as the spots come in my back a lot to rub it for 15-20 minutes which causes me to excessively burp/belch until the spot is no longer sore.  It has happened all over my body even my head and face.  It seems to be getting worse.  The Drs. are stumped, they just give me odd looks :(  
Also 2 years ago I had a brain bleed that has happened 2x's since.  Again they are stumped.  They have said it could be Cavernous Malformations but it doesn't fully fit.  Before this last bleed the burpin/belching g was extremely excessive and there was a lot of pressure on the spot on my head that had the bleed.  I am wondering if the 2 conditions are related.  The Drs. aren't able so far to tell me what is going on.  Any ideas?
9 Responses
4542129 tn?1356195558
Hi, Cindy,

I have had a very similar situation for decades now, but my soreness was all along contracted connective tissue in my skull; when I would press on the sore points, I'd burp -- sometimes for hours on end. Each burp eased the soreness a little.

Doctors thought I was imagining things or that it was a coincidence. I had my brain bleed 4 months ago [exactly 2 weeks after your above post]. They are not making a connection to my bleed and the skull pain with burping, but I felt sure that there was a connection -- indeed, that the pain with burping was some kind of an early warning sign -- and now your post seems to confirm my suspicions.

I went to a teaching/research hospital, hoping that they would make the connection or at least want to study me, but so far, nobody's interested and I'm back to feeling like I'll have to figure it out myself.

Do you still get those pains? If so, are they near connective tissue? [for me, I'm leaning toward a connective tissue disorder -- a mutation of collagen]

Four months after my bleed, I've started having the skull pain with burping again 2 days ago, but only behind my left ear -- near where my bleed was.

Please feel free to write me separately or friend me.
Avatar universal
Hello and hope you are doing well.

It may not be related the soreness and belching. The soreness could be due to the intra cranial bleeding. Symptoms will depend on the location of the bleed. The bleeding could be due to arteriovenous malformations as suggested or due to hypertension. Recurring soreness could also be due to neuropathy. Here, a nerve conduction study is usually diagnostic,it shows the effects on the nerve.

Hope this helped and do keep us posted.
Avatar universal

So nice to feel not alone.  It sounds like it c/b something similar.  The difference would be that the pains for me are more often in my back and shoulders but also other areas including my face and head.  At the moment it is in the bottom of my jaw and I have on stuck in my ankle that I sprained some time ago.  It does improve with massaging or using the ball to manipulate it and I usually get rid of it from that particular spot.  Every so often one take a long time to get rid of.  It causes lots of burping but also relief.  The last brain bleed I got a severe migraine headache with it and then my memory was slightly affected.  The pain too was behind my left ear and that is where the bleed was.  I rubbed it so hard that I ended up breaking the skin.  I don't know if they are in my connective tissue.  How would I know?  The first time I had a small seizure and some temp paralysis.  There was no head pain at all when it happened.  They thought it as a brain tumor and I had a brain biopsy to get tissue to see what it was.  Unfortunately they where only focused on cancer and the tissue wasn't checked for other things.  I looked up the disorder you mentioned and can relate to this:  Symptoms in autoimmune connective disorders may affect the function of specific organs such as the kidney involvement that often occurs in SLE or the joint pain characteristic of rheumatoid arthritis. Pain, inflammation, tenderness, dryness and irritation of mucous membranes, and rashes and hives are all prominent features.  They're typically characterized by alternating periods of remission and flares.
I have been having muscle pain in my glutes. and hamstrings which I have been putting down to menopause.  I am getting occasional hives or rashes and my nasal cavity is dry and bleeding.  Maybe coincidence but I am going to look into this further.  I am also getting  bumps and blisters in my mouth which I read is another symptom.
At the moment I am waiting for my MRI results to make sure that the last bleed has cleared up.  They say it c/b a cavernoma but it is not typical and part of that is due to the fact that it heals completely, only blood staining shows on the MRI's.  I am in Canada near Toronto.  They have sent my blood to Boston to Yale for a genetic study to see if I have the genetic make-up for cavernous malformations.  Hopefully I will hear back soon.  I'm guessing not and then I can rule that out.  Also there seems to be some relation to menses as the bleed seems to happen just before or when I have menses.
What happened to you when you had the brain bleed and have you had only the one (not that one isn't enough :) )?  Are you in the USA?  I am 51 and it happened when I was 49 for the first time.  If you don't mind me asking at what age were you when it started?  Do you by chance have Idiopathic guttate hypomelanosis (IGH)?  Small white spots on your skin.  Just thought I'd check. to see if we both have that too.
Sorry for missing your comment for three years!

"I don't know if they are in my connective tissue.  How would I know?"

I was thinking of anywhere there are two body parts being held together. It was back when I was considering one of the Ehlers-Danlos syndrome types to be a cause, but I've since given up on that connection. Plus, there's connection tissue everywhere, even between organs, so that's not a useful yardstick.

"They say it c/b a cavernoma but it is not typical and part of that is due to the fact that it heals completely, only blood staining shows on the MRI's."

Interesting. They said mine was definitely not a cavernoma but could be an atypical AVM, yet my follow-ups show that it healed completely, and there's only blood stain showing now.

Even the prominent draining veins had disappeared.

"there seems to be some relation to menses as the bleed seems to happen just before or when I have menses. "

Whereas I had gone through menopause 13 years prior to my bleed.

"What happened to you when you had the brain bleed"

Do you mean my experience during the bleed, or the deficits after?

"have you had only the one"

Yes, as far as I know. There was idle speculation by some residents that perhaps my years of migraines had been microbleeds, but there's been no testing or confirmation.

"Are you in the USA?"  

Yes, Ohio, near Cleveland.

"I am 51 and it happened when I was 49 for the first time.  If you don't mind me asking at what age were you when it started?"

My bleed was at 56. I'm now 61. The sore spots in my skull had been happening for at least 20 years, maybe 30. There had been many other bizarre symptoms and oddball ailments my whole life -- maybe ever since I was hit by a car at age 7. One resident speculated that my pituitary or hypothalamus or other deep organ had gotten injured back then, leading to all the ultimate weirdness.

"Do you by chance have Idiopathic guttate hypomelanosis (IGH)? Small white spots"

My first reaction was Yes, but I can't find any now on my exposed skin, in this light. I'll try to check more thoroughly.

What's been happening to you for the last 3 years?

I just realized it's been 5 years, not 3!
Avatar universal
Thank you very much for responding.  They have ruled out AVM but I will look into  hypertension and neuropathy through a nerve conduction study.  I have posted further details above FYI.

Take care,
Avatar universal
Please get checked for celiac disease! I have these symptoms too, but without the brain bleed, and I have celiac.
I did have celiac back then. I think it disappeared with my bleed, along with all my other food sensitivities and allergies.

It's been 4 years since your post. Do you still get the weird burping symptoms? Any new developments?
Cindy - do you have celiac?
Avatar universal
i also have same problem, if you find any treatment please tell me
Not yet but it hasn't turned into anything serious :)
Avatar universal
same problem ,, do you find any solution or treatment ??
Not yet but it hasn't turned into anything serious :)
Avatar universal
I think it is a neurological confusion where gas pain signal is misinterpreted in the brain and when you push on it you burp.  I do not think that is difinitively related to the brain bleeds.  Interestingly enough I also have this issue.  The pain can be anywhere on my body.  Today is in my elbow.  Rubbing it makes me burp a lot.  My mother is the only person I have ever met with the same problem.  Interestingly enough she also has had brain bleeds TIA strokes.
Thanks for responding. Your neurological confusion theory makes sense. It's interesting that you and your mom both have the bizarre burp phenom and that she had bleeds.

I no longer get skull suture line pain or associated burps; these days I get pain twinges in my right breast that disappear if I burp!  I can't press on the Burp Spot now -- it's somewhere deep within the soft tissue, it seems -- so I just observe and wait for it to pass.
4542129 tn?1356195558
Did the burping disappear or ease up after each bleed? What's the latest? Any more bleeds? Any more burp-a-thons? Any more clues or answers?

I missed all the comments for the last 6 years. I just discovered them moments ago. I'll add my updates by those questions and responses. And I'll be sure to click "notify me" this time.
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