Parkinson cause could show new gut connection.

Discussion in 'Other Research' started by Tim Foley, Jun 27, 2019.

  1. Issie

    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
     
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  2. Aidan Walsh

    Aidan Walsh Active Member

    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
     
  3. Issie

    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?
     
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  4. Issie

    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.
     
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  5. Aidan Walsh

    Aidan Walsh Active 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...
     
  6. Issie

    Issie 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.
     
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  7. Aidan Walsh

    Aidan Walsh Active 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
     
  8. Aidan Walsh

    Aidan Walsh Active Member

    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
     
  9. Issie

    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 likes this.
  10. Aidan Walsh

    Aidan Walsh Active Member

    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
     
  11. Aidan Walsh

    Aidan Walsh Active Member

    Eagle Syndrome Group on Facebook Join you can then see the scans & photos of Surgeries done
     
  12. Issie

    Issie Well-Known Member

    Thanks for info, but I don't do Facebook or Twitter.
     
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  13. Aidan Walsh

    Aidan Walsh Active 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
     
  14. Issie

    Issie Well-Known Member

    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: Aug 6, 2019
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