NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › New, pretty sure EDS puzzle pieces may be fitting together › Reply To: New, pretty sure EDS puzzle pieces may be fitting together
Prior to all this I had been going to the gym 3-4 time a week , eating healthy, normal weight for my 5’ 3” frame. I had Migraines a few times a month then all of a sudden I started waking up with Mild to medium headaches most every morning, and I was getting Migraines 3-4 times a week. Then the symptoms just kept compounding and getting worse over the next while Throbbing Headache in base of skull and neck and eye area, Pain up the back of neck and face throb, even vision bounces, after I take all the medication, I still feel it as if it is in the background just not as strong, like the volume has been turned down but the headache is still there. neck ache most days, Up the back of my neck around the side, Base of skull to ears into my palate area, Pinch nerves in neck, Leaving head in flexed, down or rear position for too long gives me a head ache. What feels like Nerve pain running down my neck shoulders and left arm to elbow, little and ring finger, numbness in fingers, tingling, and achiness occasionally swelling. A little on the right side too, but not as much.
Frequent sleep interruptions with neck discomfort, Sore bruised throat, especially when I first wake, Excessive mucus in throat after eating that causes coughing and throat clearing, chronic Voice hoarseness, shooting pains to ear, left side of bottom jaw and lip can feel numb and pins and needles, Throbbing jaw, neck, face, palate, nose and eyes, vision throbs, but with no pain, Occasionally Pressure in throat that makes me want to cough, hot burning feeling base of inner ears, hear ringing/ buzzing/ blood rushing in ears , after a stretching, with arms up, short episode of dizziness, vertigo, seeing stars, vision dimming and tinnitus , pressure and ache in neck, face and jaw when bending over, Irregular heartbeat, hard pounding, sometime fast fluttering feeling, Occasional Vertigo, Room spinning, nystagmus, LPR Acid Reflux, ,Burning lungs, Asthma like symptoms, Difficult starting to swallow at times, I have to think about swallowing and getting food to go down at times, frequent choking food and liquids, or get in sinus, I have aspirated food and liquids, Feels like something is protruding in right side of throat, food will sometimes get stuck in back of throat, Pain during opening my mouth wide, yawning, frequent throat clearing, Cough, especially after meal, dizziness and light headed when standing ,Occasional Blurry/ slight double vision especially after looking down for short periods, frequent Pinch nerves in neck, stiff neck, Shooting eye pain to top inside corner of left eye, Heaviness one the left eye It seems more closed transient unequal pupils, Turning and flexing my head and neck, I have limited range of motion in neck. I tend to turn from shoulders and waist. I have adapted and done this for years because of stiff neck, pinched nerves, tension.
I have a feeling of something catching on or behind something else in throat/neck. This has been going on for 18 years, I get a painful spasm in my throat when this happens. I don’t know if my styloids or the hyoid bone dislocating or catching on the thyroid cartilage is hitting on a nerve or actually getting caught behind something like my hyoid bone or thyroid cartilage, Nerve, artery, vein, tendon? Usually happens during yawning, stretching, and turning head. I have to suppress yawns or I only do a half yawn. If I yawn, and stretch with my head at any kind of angle it can happen. But I get it at times just turning my head too. It causes extreme pain. Sever burning pain in neck and causes throat to spasm, from ear to thyroid area. This burning spasm increases the longer it goes on. My ear feels like it is on fire, it is very difficult to swallow and burns and aches. It hurts to move tongue during this time, hurts in back of throat just under tongue area, I avoid talking as this makes pain worse. It feels like my throat is closing. I have to calm myself and not panic. I have to locate the area that feels caught and manipulate my tracheae/neck/throat, by pushing, and pulling until I hear an audible “pop” sound, that is the sign that the releasing of whatever was “caught” and the pain subsides and everything is a bit sore/bruised, but relatively back to normal. It can happen on left or right side, it has never happened on both sides at the same time. The right side is typically worse though when it does happen. The left side has been more frequently lately.
My GP has me on “Tecta” PPI for Silent LPR, this has helped the burning in my lungs as this was the only sign I had that I was having any reflux. I had never had asthma before so it was weird to have lung issues all of a sudden. I am going to an internist in the beginning of April for a consult on an upper GI to make sure there is no damage. But now that I know about the possibilities of GERD in EDS this is a good thing. I may ask if I can get a lower GI too because bowel issues run in my family. My family and extended families medical history has too many things that fit with EDS, I may have stumbled on and found the common denominator in all our issues.