Parkinson cause could show new gut connection.

Issie

Well-Known Member
Vascular EDS is different than this eagle syndrome. Two different things. I was about to really be upset if it was vascular EDS. Boxing would have been a horrible thing as with vascular EDS aneurysm happens. Can be in the brain or abdomen.

Do you know how to do the poor man tilt test? Need an electric blood pressure cuff and a pulse continuous pulse meter. Someone to watch the pulse meter at all times and to blow up cuff to see what your blood pressure is doing. Look it up and try to do it. Get back to me with results. You can PM me if you don't want your info public and I would suggest that.

Issie
 

Aidan Walsh

Well-Known Member
Vascular EDS is different than this eagle syndrome. Two different things. I was about to really be upset if it was vascular EDS. Boxing would have been a horrible thing as with vascular EDS aneurysm happens. Can be in the brain or abdomen.

Do you know how to do the poor man tilt test? Need an electric blood pressure cuff and a pulse continuous pulse meter. Someone to watch the pulse meter at all times and to blow up cuff to see what your blood pressure is doing. Look it up and try to do it. Get back to me with results. You can PM me if you don't want your info public and I would suggest that.

Issie
No, I meant Vascular type of Eagle Syndrome there are 2 kinds of Eagle Syndrome one is Classic other is Vascular it has compressions involved...I do not have EDS 4 VEDS... I already have an abnormal tilt table test it was done at John Hopkins
 

Issie

Well-Known Member
What did your tilt show?

Had not heard of Eagle syndrome. Interesting! Were you born with it or is there calcification? They connect compression of veins in neck with issues of dysautonomia. Is this compression causing your syncope?

So frustrating for you. So you think an illness caused your flare up and illness? Do you have typical CFS along with this?
 

Issie

Well-Known Member
Just a thought.....was looking at some of the pictures of you fighting. The mouthpiece you have to wear, could it have shifted your jaw to a wrong position? I know you have to bite down hard into it to hold things in place. With EDS, if there was a slight amount off, it could tweak your jaw and the bones in your head and give what you describe. Do they have people who do cranial sacral manipulation there? They can move the bones in your head and face and get them back in position.
 

Aidan Walsh

Well-Known Member
Just a thought.....was looking at some of the pictures of you fighting. The mouthpiece you have to wear, could it have shifted your jaw to a wrong position? I know you have to bite down hard into it to hold things in place. With EDS, if there was a slight amount off, it could tweak your jaw and the bones in your head and give what you describe. Do they have people who do cranial sacral manipulation there? They can move the bones in your head and face and get them back in position.
Not sure of the mouth piece issues I doubt this though...Syncope tilt was blood pressure drop 80/30 bradycardia ...Too dangerous chiro if Eagle Syndrome...They think Eagle Syndrome could be Genetic, some reports antibiotics

may have calcified ligaments...yes typical CFS Label...Eagle Syndome does play role in compressions of major veins Carotid Artery, Jugular Vein see Wikipedia Eagle Syndrome...Cure in Eagle Syndrome is through the neck entire not partial bone taken out 2 Surgeries needed one each side...
 

Issie

Well-Known Member
Not sure of the mouth piece issues I doubt this though...Syncope tilt was blood pressure drop 80/30 bradycardia ...Too dangerous chiro if Eagle Syndrome...They think Eagle Syndrome could be Genetic, some reports antibiotics

may have calcified ligaments...yes typical CFS Label...Eagle Syndome does play role in compressions of major veins Carotid Artery, Jugular Vein see Wikipedia Eagle Syndrome...Cure in Eagle Syndrome is through the neck entire not partial bone taken out 2 Surgeries needed one each side...
It's not a chiropractor who does it. It is very gentle and you wonder how it could be doing anything. It was an osteopathic doc who does manipulation who did it on me. Also some massage therapist are trained in it.

That surgery sounds awful. How would that affect your face structure? Why couldn't they just take a little bone off?

So sorry for your bradycardia. My sister had that type dysautonomia too. Hers went so low her heart stopped and they were about to inject her with epinephrine into her heart. Seems to go with CFS for some. I have tachycardia and POTS. But tend to have higher blood pressure but still the drops that cause the fainting feelings. Yet, thankfully have enough warning to get down when I feel it and have only fainted twice. Both times my hubby caught me before I landed.
 

Aidan Walsh

Well-Known Member
No manipulation at all allowed with eagle syndrome. the Bone surrounds the veins sometimes the vein calcifies to the bone in Eagle Syndrome some ENT Docs do in through the mouth they remove the tonsils the bone is behind tonsil

area but they only remove partial not full that is why skull based surgeons are best they remove all the Bone entirely & clear the veins through outside neck or in behind each ear it is about 4 inch incision each side see Google photos Eagle

Syndrome & Wikipedia as well there are Groups on Facebook it runs in Families as well
 

Aidan Walsh

Well-Known Member
It's not a chiropractor who does it. It is very gentle and you wonder how it could be doing anything. It was an osteopathic doc who does manipulation who did it on me. Also some massage therapist are trained in it.

That surgery sounds awful. How would that affect your face structure? Why couldn't they just take a little bone off?

So sorry for your bradycardia. My sister had that type dysautonomia too. Hers went so low her heart stopped and they were about to inject her with epinephrine into her heart. Seems to go with CFS for some. I have tachycardia and POTS. But tend to have higher blood pressure but still the drops that cause the fainting feelings. Yet, thankfully have enough warning to get down when I feel it and have only fainted twice. Both times my hubby caught me before I landed.
small line incision with time it is not noticed once swelling is gone & No does not bother facial appearance except odd swelling during recovery period...Numerous with ME/CFS EDS now diagnosed with Eagle Syndrome
 

Issie

Well-Known Member
So sorry! Hope it all works out for you and the release of veins stops the syncope. I'll look into it further. I have horrible TMJ and tinnitus have had 2 TIA in my 40 and 50. Says that can go with it. Wonder if that's part of the blood flow issues? Given me something else to look into.
 

Aidan Walsh

Well-Known Member
So sorry! Hope it all works out for you and the release of veins stops the syncope. I'll look into it further. I have horrible TMJ and tinnitus have had 2 TIA in my 40 and 50. Says that can go with it. Wonder if that's part of the blood flow issues? Given me something else to look into.
Countless told they have TMJ, tinnitus is also a symptom of Eagle Syndrome & I have seen a Mother Daughter both having Eagle Syndrome diagnosed the Mother was operated on the daughter they will Monitor the growth every 5

years unless she shows signs earlier...All these damn illnesses could be Eagle Syndrome & not CCI, Stenosis or even Glycogen Storage Disease GSD maybe the blockage is giving false measurements in blood tests or other scans
 

Aidan Walsh

Well-Known Member
So sorry! Hope it all works out for you and the release of veins stops the syncope. I'll look into it further. I have horrible TMJ and tinnitus have had 2 TIA in my 40 and 50. Says that can go with it. Wonder if that's part of the blood flow issues? Given me something else to look into.
Eagle Syndrome Group on Facebook Join you can then see the scans & photos of Surgeries done
 

Aidan Walsh

Well-Known Member
ok, I forgot last message I saw one Guy ME/CFS on a blog called Patient he was diagnosed with Silent Migraines he was 5 years out no more illness leading a normal life he did not say medicines or diet but that is what Doctors found so on the blog called Patient his header topic was titled Silent Migraines
 

Issie

Well-Known Member
ok, I forgot last message I saw one Guy ME/CFS on a blog called Patient he was diagnosed with Silent Migraines he was 5 years out no more illness leading a normal life he did not say medicines or diet but that is what Doctors found so on the blog called Patient his header topic was titled Silent Migraines
I have those too. They started as silent with aura and progressed to ones with pain. But, thankfully don't have them often.
I told my sis about this for her son. He has blood pressure like you and also syncope. He has symptoms that fit this.
 
Last edited:

Merida

Well-Known Member
@Aiden Walsh @Issie

I am trying to catch up on this interesting conversation. We were in Boston, as my daughter, grandson, son-in-law moved there from near us. We are very emotionally close to our grandson and have had 2 trips there already. When we get home to L.A., I just can't catch up - totally exhausted for weeks.

Aiden - The Eagle Syndrome sounds very important, but I expect it is 'just' another unusual structural issue that can come with this 'thing." And it may be the structural issue that is causing big problems for you. Interesting that I also have abnormal deposition of Calcium phosphate - in my abdomen as multiple calcified phleboliths. I also have been diagnosed with diastolic dysfunction. I am wondering if my worst fatigue and symptoms may in fact be related to cardiovascular issues. I have very erratic blood pressure as of 4-5 years now. I am suspected of having EDS, but no hyper mobility.

Issie - always appreciating your insight and comments. Thank you.

I am a biologist, but am headed another route. I have a call in to a very gifted medical psychic. Will talk with her Tuesday. Maybe she will have some insight.

Hugs to you both. What a journey.
 

Aidan Walsh

Well-Known Member
To all of you here I read some very interesting points on Facebook Groups one was on Eagle Syndrome other on an Alpha Gal Meat Allergy post, I had asked the Woman who had one sided Eagle Surgery a calcified bone removed did she have any Allergy issues her response was Yes, she said her Eagle & all her symptoms started from an infection

she got from wearing an earing that had nickel she did not know then she was Allergic, so she said my question fit Eagle Syndrome but it gets better on the Alpha Gal Meat Allergy Group a Woman there was sent to Vanderbilt to see an Allergist she was reacting to everything, they ran the blood test for Alpha Gal it came back Negative they did lots

of food & metal allergy testing including Patches she was Positive to allergies in Dogs, Cats, Corn, Dairy, several outdoor allergens 'not mentioned' & she had Gold allergy she was Negative on other metal items...They also did

Mammal it came back Positive so although she had the Alpha Gal Blood Test Negative she was still allergic to beef pork lamb but Doctor did not know Why the blood was Negative but I have heard this before I know Why? It turns out that she was Allergic to the Protein in these Mammals so its best to always run both skin & blood test in AG.Also

with metal allergies pots. pans even stainless steel ones are not to be used & Teflon or coated to be stopped was told best ones are covered glass cookware is safe. I am seeing some with Eagle Syndrome could have tongue tie or lip tie so mention this to your Doctors when you mention Eagles, AG & Metal allergies. My Niece has Gold Allergy I

believe I have Nickel Allergy...One Doctor told her to continue consuming Milk she refused she stopped all Dairy & Meats...
 

Merida

Well-Known Member
To all of you here I read some very interesting points on Facebook Groups one was on Eagle Syndrome other on an Alpha Gal Meat Allergy post, I had asked the Woman who had one sided Eagle Surgery a calcified bone removed did she have any Allergy issues her response was Yes, she said her Eagle & all her symptoms started from an infection

she got from wearing an earing that had nickel she did not know then she was Allergic, so she said my question fit Eagle Syndrome but it gets better on the Alpha Gal Meat Allergy Group a Woman there was sent to Vanderbilt to see an Allergist she was reacting to everything, they ran the blood test for Alpha Gal it came back Negative they did lots

of food & metal allergy testing including Patches she was Positive to allergies in Dogs, Cats, Corn, Dairy, several outdoor allergens 'not mentioned' & she had Gold allergy she was Negative on other metal items...They also did

Mammal it came back Positive so although she had the Alpha Gal Blood Test Negative she was still allergic to beef pork lamb but Doctor did not know Why the blood was Negative but I have heard this before I know Why? It turns out that she was Allergic to the Protein in these Mammals so its best to always run both skin & blood test in AG.Also

with metal allergies pots. pans even stainless steel ones are not to be used & Teflon or coated to be stopped was told best ones are covered glass cookware is safe. I am seeing some with Eagle Syndrome could have tongue tie or lip tie so mention this to your Doctors when you mention Eagles, AG & Metal allergies. My Niece has Gold Allergy I

believe I have Nickel Allergy...One Doctor told her to continue consuming Milk she refused she stopped all Dairy & Meats...
@Aiden - So good to hear from you. Interesting that my granddaughter and grandson ( from my own son - who has symptoms) both have tongue tie. One had the surgery. I have had nickel allergy on/off - reacted to snaps on clothing. Plus, I am CDC positive for Lyme. And have not been tested for co-infections. known tick bite/rash, 2010 Virginia.
Wow. Thanks for sharing these details.
 

Aidan Walsh

Well-Known Member
@Aiden - So good to hear from you. Interesting that my granddaughter and grandson ( from my own son - who has symptoms) both have tongue tie. One had the surgery. I have had nickel allergy on/off - reacted to snaps on clothing. Plus, I am CDC positive for Lyme. And have not been tested for co-infections. known tick bite/rash, 2010 Virginia.
Wow. Thanks for sharing these details.
How well did the child do with tongue tie Surgery did it help very much? I have not been tested for it though, I also had something weird done in my Teens on LOL my penis, the skin behind had to be cut similar to tongue tie it hurt with erections, it was day thing in Doctor's Office...So now I wonder if all of these things are connective tissue issues??

Sorry you are going through this total hell but Yes I think now AG, Eagle Syndrome, Nickel Allergy go together. I read one Letter a Doctor in Scotland wrote to the Editor of 'The Eagle has Landed' Publication saying that she believed her Eagle Syndrome was triggered by those bad Antibiotics...I wonder also

maybe they contain heavy metals or Mammal products. Maybe we have adrenal benign Tumors or benign pancreatic tumours from Calcifications...I think those antibiotics were also given to me prior to becoming ill as a possibility

Hope you can see the asymmetry I mentioned, and check the impact of a sacrum that is unstable. Note that the jaw is also involved. The pictures are exaggerations of the asymmetries for demonstration purposes. I first saw this and thought it was ridiculous - 15 years ago. But, yep, that’s m
 

Aidan Walsh

Well-Known Member
How well did the child do with tongue tie Surgery did it help very much? I have not been tested for it though, I also had something weird done in my Teens on LOL my penis, the skin behind had to be cut similar to tongue tie it hurt with erections, it was day thing in Doctor's Office...So now I wonder if all of these things are connective tissue issues??

Sorry you are going through this total hell but Yes I think now AG, Eagle Syndrome, Nickel Allergy go together. I read one Letter a Doctor in Scotland wrote to the Editor of 'The Eagle has Landed' Publication saying that she believed her Eagle Syndrome was triggered by those bad Antibiotics...I wonder also

maybe they contain heavy metals or Mammal products. Maybe we have adrenal benign Tumors or benign pancreatic tumours from Calcifications...I think those antibiotics were also given to me prior to becoming ill as a possibility
yes saw the items sent, its also Aidan Not Aiden :)
 

Merida

Well-Known Member
yes saw the items sent, its also Aidan Not Aiden :)
@Aidan Walsh Sorry for the the mis-spell of your name. Old brain syndrome here - can't remember proper names, and spelling is going to hell.
Anyway, both of the grandkids with tongue tie have delayed speech. My granddaughter, not so much, my grandson is quite delayed - age 3. He had the tongue tie surgery at under a year- his Mom and Dad are not certain it was the right decision. He understands everything, but pronunciation is very difficult. He also has a counterclockwise hair whorl on the right side of his head. Unusual. And my granddaughter has 2 hair whorls, one in the front above her forehead. Unusual. So, yes, there are a lot of glitchy structural differences that may or may not be important. But hair whorls are absolutely connected to brain development.

My son also had delayed speech, delayed reading, delayed lots of things. But about age 9-10 everything turned around. He graduated 2nd in large high school class with heavy science/math, and cum laude computer science, Univ. of California, Santa Barbara. He has a very successful internet business. Very smart guy. But also has some health issues, some depression, had ear problems, and eating problems, fatigue. He had a well documented case ( IgG/IgM) of EBV at age 5, 1986. Had multiple neurological symptoms following this - including severe urinary frequency, pain in fingers and toes, nighttime hunger, depression. He also has ( mild) scoliosis, as do I, as did my Mom. Also RhD neg.

So, Aidan, seems as if we are different somehow. I keep searching. Thank you for sharing. I will continue sharing, too. I may learn something new tomorrow. Sometimes we need to reach beyond the scientific method to the realms that few can really reach into. So . . . Blessings.
 

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