Forum Replies Created
-
AuthorPosts
-
HorseHappyParticipant
This sounds very similar to my dad. He was diagnosed with calcification of the arteries and has a TAA.
Not much more I can tell you than that unfortunately.
HH
March 16, 2012 at 3:41 pm in reply to: Those that had the larger head circumference – did you sleep walk/talk have night terrors as a child? #1857HorseHappyParticipantI actually have a small head (hat size is 6 3/4) and I used to walk AND talk in my sleep, sleep with my eyes open and have night terrors / extremely vivid dreams. I have actually punched and bitten people IN MY SLEEP. My ex-husband used to call me the Midnight Ninja…LOL! And, yes, people have a VERY hard time waking me up from them. Often they can apparently arouse me enough to bring me out of it but not enough to bring me fully awake…but even that is difficult.
HH
HorseHappyParticipantI get that all over pounding at times. I can feel it in my ears, fingertips, bottom of my feet, head. I don’t get the distended veins or blood pooling with it though…and I don’t get the burning.
I frequently go to bed freezing and under three blankets only to wake up at some point burning up and stripping down. This is followed some time later by waking up, freezing again, to get into sweats and pull my three blankets back up over me. This goes on until about 5am..after which I am consistently freezing. Doesn’t matter what I set the thermostat in the house to…could be on 60 or on 80…..I still alternately freeze and fry all night long and wake up freezing. But I have some other symptoms that point to me having poor thermoregulation…so I imagine it’s all related.HH
HorseHappyParticipantI need to schedule an appointment with the Mr. Dr. Driscoll for an updated eye exam. Linda from Dr. Francomano’s office e-mailed wanting the results from my 2009 eye exam saying that once they have those they can schedule me an appointment. Problem is that it was an “on the fly” exam that I got after I lost my glasses while out of state…so it was pretty cursory. Just enough for me to get a pair of new glasses. I’m not even sure I remember where I had it done other than somewhere outside LA in California (O,o)
HH
HorseHappyParticipantIn reading both…I’d have to say that Eagle Syndrome would be the more likely of the two based on symptoms. Ah…yet something else to put on my list of things to rule out (or, conversely, verify).
You are a regular fountain of knowledge Palomino! Impressive! Too bad you, and so many of us, have to come by it the hard way….trial by fire. But I DO appreciate you sharing this with me! I had never heard of Eagle Syndrome!
HH
HorseHappyParticipantI drink enough water to float an armada. Around 2 gallons per day…more in the summer. It is very rare to see me without a drink in my hand. If I’m not carrying one, you can be assured that I have one sitting nearby. I also eat enough salt to make my mom, aunt and brother…all nurses, cringe. Pickles, chips, salt on lemons, salt on avocados and, heaven help me, sometimes pouring it straight into my hand and eating it in pinches.
I’ll be so happy when I hear from Dr. Francomano and get an appointment….maybe she’ll have some insight as to what it might be…..I hope!My other new symptom is chronic heartburn and a pressure in my throat. My dad has a hiatal hernia and that is how his symptoms started out so it makes me wonder. Zantac and Tagamet have become my bestest buddies….LOL! But seriously..it’s bad enough that it causes me some pretty serious nausea. Not much fun at all.
HH
HorseHappyParticipantHey, HH, that’s GREAT!! Do you have POTS, too? If so, we could include you in our study of looking for changes in the vessels in the back of the eye, if you’d like. We’re about ready to wind it up! If you’d like to PM me and let me know when you’re coming, I may be able to show up and say ‘howdy-do’. 🙂
LOL!!! I did! I’ve had the good fortune of already meeting your wonderful husband! Not sure if I have POTS but am suspecting it as I took my pulse one day after doing nothing more than lifting a small box from the floor to a table and it was 162bpm. WOW! (O,o)
Dr. Francomano is also listed as a provider on my insurance (am I just blessedly lucky or WHAT???) so I plan to make an appointment with her here shortly. I’m fortunate in that I am in a position where I am able to go anywhere in the country to get what I need from a medical perspective…so I have no qualms about going to Baltimore, especially if it means cutting out the aggravation and frustration of dealing with doctors who wouldn’t be able to find a case of EDS with both hands, a flashlight, a tour guide and a map. Been there…done that…and the only reason I’m anywhere near a diagnosis is because, after TWENTY YEARS of searching for answers, I really really believe I have found it….thanks to the PATIENTS in the EDS community and EDNF. I kid you not…my vet knows more about EDS than any doctor I have spoken to YET! How sad is THAT?? Yikes!
I would LOVE to meet you! I will definitely give you a heads up as to when I am coming! How EXCITING!!
HH
October 7, 2011 at 11:19 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1516HorseHappyParticipantI have it on a chronic basis. Worse when I first wake up but it is always there at some level throughout the day. I have knots from my neck to my shoulders and in my upper back non-stop as well. I’ve been a mooch for having the back of my neck, at the base of my skull, squeezed and massaged ever since I was itty bitty 🙂
I’m willing to try anything! (Been a LONG, tiring week. I’m not just out of spoons….I’m out of any and all cutlery altogether at this point. It is a sheer act of willpower and masochistic stubbornness to drag my self around right now.)
Marie
HorseHappyParticipantMy nails look like possibly a combo of Terry’s Nails and Red Lunula.
I have the dark pink strip at the distal end of my nail and I have NO lunula on any of my fingers. I have small ones on my thumbs. But as it says that Red Lunula is associated with collagen vascular diseases and I am a VEDSer, that makes sense.
Marie
-
AuthorPosts